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FeralUrban Intro 2016.06.20

venlafaxine serotonin syndrome TMS Parkinson like movement Serotonin toxicity Cannabis neuropathy migraine Serotonin Discontinuation

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#1 FeralUrban

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Posted 20 June 2016 - 06:47 PM

Serotonin Toxicity vs. Serotonin Discontinuation Syndrome:

 

I have had very severe chronic serotonin toxicity. Neuralgia and neuropathy developed over a 4 years period to include the entire right side of my body. Level 8-10 pain daily for 12 weeks before anyone figured it out. Given injectable IMITREX to" help" -- wrong, made it worse, could have killed me! The toxicity started wrecking my ANS: sweats, chills, loosing 1/2 - 2 lbs daily for months, high fevers, low fevers, high blood pressure, migraines,  vertigo, bowel issues, at points inability to walk or voluntarily move  my body. Basically, hell. The pain was so severe that I would dissociate — once for 3 whole days.

Are there any resources here or elsewhere that offer in depth information about Serotonin Toxicity?

 

The toxicity was caused by receiving TMS treatments. Transcranial Magnetic Stimulation. I had one round of 36 treatments 4 years ago, got me out of depression and "coincidentally" a developed neuraligia/neuropathy at the same time. Again had TMS this past December - February. The doctor who treated me is a  leading researcher, psychiatrist, runs a program training other docs to give TMS treatments and I mean it -- a really a lovely woman, smart, and compassionate  -- told me when I was asking if  the TMS was giving me muscles spasms and increased nerve pain, "That's an issue for your neurologist." 

 

Previously she had also told me that one of the ways that TMS works, is it increases the effect of serotonin based medications. She didn't see Serotonin Syndrome sitting in front of her and asking her "What's going on here?" Today the pharmacist told me that TMS reduced the blood/brain barrier. WARNING: TMS + Venlafaxine caused serotonin toxicity for me, be cautious!

 

Another smart compassionate and more curious woman and  — my psychiatrist figured it out after I delivered her all the puzzle pieces I had been collecting. She told me to immediately stop the Imitrex and start a taper of Venalfaxine. VERY SLOWLY, though she didn't give me specifics on what slowly meant. I came up with what I thought was  slow taper, and half way through had to double the length.  I tapered Venlafaxine in 3 months from 225 to 0. I had taken it for 10+ years. Psych meds for 25 years. I had to, because it was quite literally killing me.

 

But now of course, I'm ten days off and I'm feeling pretty sick: Parkinson-like movement symptoms being the chief concerning symptoms, especially when combined with the vertigo. I take a few moments to "Get going" when I want to move. And then I lurch around for another 10 seconds until my body remembers how to walk.  I have the bruises to prove it!  At times, just standing still my whole body shakes like a tree in the wind. I keep dropping things and have no strength in my hands. Can someone inform me what this is? Is this part of Discontinuation Syndrome? Its kinda freaking me out. 

 

I also have the usual! discontinuation symptoms! ringing ears, painful eyes, weird noises in my head, muscle twitches, nausea, diarrhea, brain fog, EMOTIONAL!, Over energized and completely fatigued. Visual disturbances. Muscle and joint pain almost everywhere. Swollen hands. Itching skin so bad I thought I was having anaphylaxis and went to the ER two days ago.

Surprised I could remember all my symptoms, cause really the brain fog + zero memory issue makes it so this post took me several days to write, in several 1 hour sessions. I used to write semi-professionally. So this is actually a symptom as well.

 

Last night, I had about 2-3 hours of uncontrollable rage (self directed violence) that was provoked by sensory overload. Embarrassing, terrifying. Is this part of Discontinuation Syndrome? 

 

I know the best remedy for "discontinuation syndrome" is reinstatement. I tried 3 mg prozac. Got nerve pain from head to toe within 4 hours (a symptom of Serotonin Toxicity). BUT, on the flip side the next day a started feeling better. My psychiatrist is going to look at all the possible SSRI and SNRIs to see which one might be possible in a micro dose. 

 

I spoke to my psychiatrist today and she suggested 20 mg non-extended release venlafaxine twice a day, with a a slower taper. I need to figure out what a slower taper would look like. I read 10% decrease per month? Is that correct? Any resources, advice on that?

 

BUT, the thing is, I don't think any boosting of serotonin is a good idea for me right now given how extremely ill I got from serotonin toxicity.

AND YET, my "discontinuation" is fairly severe, so I’ve decided to go back on. I’m choosing nerve damage because I don’t want to risk long term discontinuation syndrome. I will get myself ready to be in pain. 

 

 

What's worse: body wide neuropathy (nerve damage) in both CNS and ANS?

Or Parkinsons like movement issues, vertigo, fits of rage, and the risk of long term discontinuation syndrome?

 

OR??? Is there something I can do about discontinuation that will not raise Serotonin? 

 

I'm pretty freaked out by realizing I'm in between two really horrible things, and I do not know with certainty what to do. 

 

Please make any responses concise and focused on the above question. I've got major information processing issues. (In the end it took me several hours to write this post. I tried to keep it focused. 

 

THANK YOU!

 

 

--------------

 

What I am doing:

 

EXERCISE I am making myself go out and do gardening every day. Hard physical labor. Somehow this works for me. Can't explain it. I don't question it, though it is making my muscles sore from the work out. Figure I’m regaining the strength I lost with 4 years of nerve pain.

Most days I use foam rollers and yoga therapy (my profession) to soften the rocks in my muscles. And ice baths (fabulous for my nerve pain and muscle spasms and migraines)

 

DIET: I drink lots of water and coconut water, lemon, mint. 

Basic diet for past 5 months: DO EAT: above ground vegetables, meats, fish, eggs, seeds, nuts, water. DON'T EAT: grains, no fruits, no dairy, no root vegetables (EXCEPT gratefully purple potatoes, parsnips and turnips :-) !

RECENT DIET ADJUSTMENTS Reinstated coffee and it seems to help me move a bit more smoothly.  :-). Added Rice and bananas as foods I can eat when I'm still horribly nauseous and ravenous simultaneously.

 

HERBAL TINCTURES: burdock, kava, lobelia, turmeric, white willow, and valerian. 

 

CURRENT DAILY MEDS: 

Felodopine for High blood pressure

Oxcarbazepine for nerve pain

Naproxen (Aleve) as an antidepressant (anti-inflammatories do help)

Levothyrozine (hypothyroid)

Levothyronine (hypothyroid)

Singular for asthma

 

Medical Marijuana — PCP, neurologic and psychiatrist all endorse this.

Cannabis (oral infusion in cocoanut oil 2-3 times a day and vaping) Helps with the nerve pain, anxiety and depression. Total game changer for allowing me to be physically active and do things I enjoy and need to do to feel like I’m actually living — i.e. gardinging, socializing

Question: is cannabis seroternergic? Anyone know?

 

PRN MEDS

* Valium 5 mg PRN for muscle spasms, and at this point for the anxiety, irritability. Usually take 0-4 each day, depending on how bad things are. I chart it every day. Aware it is addictive.
* Bendydryl  (two OTC pills) with Promethazine suppository for neurological pain and nausea. Works OK for pain.

* Low dose Ketamine nasal spray when the neurological pain is beyond bearing (to stay out of the ER) I’m finding that a single dose really puts the brakes on the discontinuation syndrome and have been using it that way. Previous does for nerve pain were 4-16 depending on the severity of the pain.

 

CURRENT SUPPLEMENTS: 

Methylated B vitamins (I lack 1 of the genetic pairs for methylation)

Vitamin D 5000 iu. for depression 

Alpha lipoid acid for neurological issues

N Acetyl Cystine for neurological issues

Reservatrol for neurological issues

CoQ10 for neurological issues

 

PAST:

10+ years venlafaxine ER

25 years psych meds. First ten years took almost all of the possibly relevant ones. Side effects and ineffectiveness.

Starting 2 years ago I started slowly weaning off meds. I've gone from 14 meds to 7. 

 

Diagnoses:

PTSD

Major Depression

Anxiety

Sleep disorder

"Post Lyme Disease" An auto-immune system problem?

Migraines (Serotonin toxicity?)

Neuralgia and neuropathy through out the right side of my body

 

Yours truly,

UrbanFeral

 

--------------------

 

Med / discontinuation history.

2002? to 2016 Venlafaxine ER. First antidepressant that worked. Alas due to combination with TMS (transcranial Magnetic Stimulation) I developed chronic serotonin syndrome, extremely ill since January 2016. Tapered over 3 months from 225 to 0. (too fast!) It was easy till I got to the 37.5, and then discontinuation kicked in. As of 6/20/16 going back on 20 mg non-extended release, twice a day and beginning a slower taper. 

 

2012-2016. One at a time, slowly I eliminated medications from 14 to 7. DX Plaquenil which had been treating post Lyme non-specific autoimmune disorder. Safely got off it over a 4 month period. DX Spironolactone for heart arrhythmias and high blood pressure. No issue getting off it. Lunesta for insomnia, tapered off over a 4-5 month period. Ativan - stopped taking it when I started taking Valium this year to control severe muscle spasms. Cannot remember what else I got stopped taking.

 

1992-2002, over 20 different medications tried alone or in combination that were either ineffective or had bad side effects. I'm going to work on a complete list. It's going to be real piece of work. 

 

 


2002 to 2016 Venlafaxine ER 225mg.  2013 TMS treatments triggered nerve pain in face, arm, back.  2016 TMS round ending Feb 1 Central Nerve Pain and and sub-acute serotonin toxicity compounded by Imitrex.  April-June tapered over 3 months from 225 to 0. Reinstated 6/20/16 21.5 nonER 2x day. 7/7/16-37.5mg; 7/17/16-36.6; 7/22/16-33.75; 8/22/16 32.6mg, 9/11/16-28.9mg, 9/25/16-25mg, 12/3/16-19.4mg, 12/18/16-18.5 holding.  OTHER DAILY PHARMACEUTICALS:   *Oxcarbazepine 150 mg 2x/day since mid 2015, *Naproxen 220mg 3x/day as an antidepressant and for pain since 2012, *Levothyrozine 75mcg since 2008 (hypothyroid), *Levothyronine 5 mpg 2x/day since 2012 (hypothyroid) *montelukast SOD 10 mg for asthma since 2014, Advair 250/50 2x daily, [DX 11/16 Felodopine 5mg since 2006,DX combivent 8/1/16] *MEDICAL MARIJUANA for neuropathic pain:CBD oil 25 mg 3-4 x day, THC tincture a few drops: 1/4 tsp 0-3x/day, vaporize CBD for breakthrough pain, CBD concentrate for severe pain.  PRN MEDS *Valium 5 mg PRN up to 4/day for muscle spasms, usually 1-2 x/ day. *Low dose Ketamine nasal spray for severe pain, and also finding 1 dose calms bad WD quickly. HERBAL TINCTURES: burdock, lobelia, turmeric, white willow. CURRENT SUPPLEMENTS:  *Methylated B vitamins, *Vitamin D 5000 iu, Alpha Lipoid Acid, Neti pot. [DX 6/13/16 promethazine suppository + 2 OTC Benadryl for severe pain N Acetyl Cytine for asthma1992-2002, over 20 different psych meds. 2012-2016 Eliminated 7 meds 1 at a time DX Plaquenil DX Spironolactone DX Lunesta, DX Ativan,  + others


#2 SquirrellyGirl

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Posted 20 June 2016 - 08:45 PM

Hello, FeralUrban - welcome to SA!

 

Wow, your story is a bit complicated for my level of moderatorship, so I'm hoping a more experienced mod will come along soon.  Altostrata is our founder here at SA and she is expert at spotting serotonin toxicity.

 

If it is possible to condense your history into a quick synopsis, it would help everyone if you could fill in your signature block.  This appears below all your posts so gives everyone your history at a glance:  Please put your withdrawal history in your signature

 

You seem to be well-educated about what is going on but I will give you our links that we provide people who show up in withdrawal.

 

Introduction to AD Withdrawal Syndrome

About reinstating and stabilizing to reduce withdrawal symptoms

Video:  Healing From Antidepressants - Patterns of Recovery

What is Happening in Your Brain

 

Two supplements we strongly suggest members take while in withdrawal:  Magnesium and Omega-3 Fish Oil

 

I'm glad you have joined us!

SG

 

 

I just wanted to let you know that your Intro was seen by me.  I'm glad you are here!


Prozac 1995-1999, don't remember the dosage; Wellbutrin 1999-2002? Don't remember dosage though it was in the 300 mgs range
Effexor XR 2002-2014 up to 225 mg at one point, down to 37.5 mg towards end but back up to 75 mg in 2014; now realize I had W/D as I dropped down, memory very poor about history.  Did fast taper, don't remember details, around August 2014.
Took Sam-E 200 mg AM and 500 mg L-tryptophan PM Sept.2014 to January 2015

Doing poorly, put on Viibryd 10 mg for 1 wk, 20 mg for several days, BAD ANXIETY, fast taper to 0 in a week; back on Sam-E 200 mg AM and L-tryptophan 500 mg PM until April 10, 2015; doing very badly, put on Remeron 7.5 mg start April 15-April 30, 2015; Increased Remeron from 7.5 mg/day to 37.5 mg by May 22, 2015; still doing very badly,

June 1. 2015 Reinstated Effexor XR 37.5 mg, Remeron dropped to 30 mg PM. Immediate relief of symptoms, like nothing had ever happened!  On p-doc's orders went up to 75 mg Effexor June 11-12, then back to 37.5 mg when I realized all the hell I had been through before was WD from Effexor!  Joined SA and began tapering both too soon one month later.

8/22/15: Effexor to 30.75 mg, Remeron to 22 mg. 9/9/15 Effexor 30 mg/Remeron 21 mg. 9/24/15: Remeron 19 mg. 10/25/16: Remeron 17 mg. 11/14/15:  Effexor 28.5 mg 12/2/15: Remeron 16 mg. 12/5/15: Effexor 28.1 mg. 12/17/15: Remeron 15 mg. 1/26/16: Remeron 14 mg. 3/22/16, Remeron 13.5 mg and Effexor 25.9 mg (had nudged it down by fraction of a mg since Dec).  4/28/16: Remeron 13 mg, Effexor 25.5 mg.  5/21/16: Remeron 12 mg, Effexor 24.75 mg.  6/17/16, Effexor 23.25 mg, Remeron 11.6 mg. 7/12/16:  Remeron 11 mg, Effexor 22.12 mg.  9/22/16:  Effexor 19.5 mg, Remeron 9 mg.  As of 4/12/17:  Effexor 12.4 mg  Remeron 5.9 mg.

 

My intro: http://survivinganti...e-2#entry196679

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.


#3 FeralUrban

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Posted 21 June 2016 - 06:57 AM

I took 25 mg of venlafaxine (Not the ER) last night.  this morning I woke up and my body could move normally, which tells me that the parkinsonian movement issues are part of discontinuation.

 

BUT, sadly, I have muscle spasms again in both legs and arms, a symptom of my serotonin toxicity -- or maybe you prefer to call it extreme side effects (see previous post) Muscle spasms for me have often been a signal of neurological pain hell is coming. 

 

This morning I took a half dose: 12.5 mg. 

 

Very depressed today. Feeling defeated.

No venlafaxine makes me very ill.  

Low dose venlafaxine, less than where I dropped off gives me neurological symptoms I had while on it. 

 

Wondering how long it usually takes to get  responses on the INTRO forum? 

 

I've looked high and low on this site and found precious little on serotonin syndrome, other than a basic description of some of the symptoms. 


2002 to 2016 Venlafaxine ER 225mg.  2013 TMS treatments triggered nerve pain in face, arm, back.  2016 TMS round ending Feb 1 Central Nerve Pain and and sub-acute serotonin toxicity compounded by Imitrex.  April-June tapered over 3 months from 225 to 0. Reinstated 6/20/16 21.5 nonER 2x day. 7/7/16-37.5mg; 7/17/16-36.6; 7/22/16-33.75; 8/22/16 32.6mg, 9/11/16-28.9mg, 9/25/16-25mg, 12/3/16-19.4mg, 12/18/16-18.5 holding.  OTHER DAILY PHARMACEUTICALS:   *Oxcarbazepine 150 mg 2x/day since mid 2015, *Naproxen 220mg 3x/day as an antidepressant and for pain since 2012, *Levothyrozine 75mcg since 2008 (hypothyroid), *Levothyronine 5 mpg 2x/day since 2012 (hypothyroid) *montelukast SOD 10 mg for asthma since 2014, Advair 250/50 2x daily, [DX 11/16 Felodopine 5mg since 2006,DX combivent 8/1/16] *MEDICAL MARIJUANA for neuropathic pain:CBD oil 25 mg 3-4 x day, THC tincture a few drops: 1/4 tsp 0-3x/day, vaporize CBD for breakthrough pain, CBD concentrate for severe pain.  PRN MEDS *Valium 5 mg PRN up to 4/day for muscle spasms, usually 1-2 x/ day. *Low dose Ketamine nasal spray for severe pain, and also finding 1 dose calms bad WD quickly. HERBAL TINCTURES: burdock, lobelia, turmeric, white willow. CURRENT SUPPLEMENTS:  *Methylated B vitamins, *Vitamin D 5000 iu, Alpha Lipoid Acid, Neti pot. [DX 6/13/16 promethazine suppository + 2 OTC Benadryl for severe pain N Acetyl Cytine for asthma1992-2002, over 20 different psych meds. 2012-2016 Eliminated 7 meds 1 at a time DX Plaquenil DX Spironolactone DX Lunesta, DX Ativan,  + others


#4 scallywag

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Posted 21 June 2016 - 10:05 AM

FeralUrban -- Welcome to Surviving Antidepressants.

Your first post is very detailed and contains several questions. You are taking many drugs, which makes your situation complex; this is requiring research and time.

You seem to like and respect your psychiatrist. What has she advised you about your condition? What has she suggested for tapering?

It looks as if your trial reinstatement last night has given you the answer to one of those questions -- at least some of what you're experiencing is from the discontinuation of the Effexor. Have you informed your pDoc about this? What did she advise?

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results
Cymbalta (brand name), 60 mg 2012 - 2015; 20 mg to 7 mg in 2016, exact doses and dates in this post;
2017: 6.3 (58 beads) Feb. 1; 5.6 mg (52) Feb. 22; 5.4 mg (50) Mar. 15; 5.1 mg (47) Mar. 25; 4.9 mg (45) Apr. 5; 4.5 mg (42) Apr. 14;
Current dose: 3.5 mg (32) 2017-Apr-26
+ Supplements: fish oil (1500 mg EPA/500 mg DHA), Vitamins: D3, K2, C; Minerals: Mg, Se, Cr, I, V
scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet


#5 JanCarol

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Posted 21 June 2016 - 10:12 AM

Hey Feral - 

 

I'm sorry to take so long to get back to you - I'm the s-l-o-w-e-s-t mod, but I do understand much (if not all) of what you are saying.  We're all volunteers here, it's a not-for-profit site, and we do try to provide personalized information - but this is more an information site than it is a support site.  That said, it's awesome that you posted here in the intro forum, if it had been a random post somewhere else it would take longer to find it.  And thank you for the signature of your withdrawal history.  Can you please make a section in your signature for what you are CURRENTLY taking?  Dosages, dates of last drop, would help us immensely.

 

I'm so sorry this happened to you.  There are people here who walk the fine line between "toxicity" and withdrawal symptoms.  The symptoms are very much the same - which makes it difficult to suss out sometimes which is the worst contributor to the symptoms.  (LexAnger comes to mind as someone who has to taper not-too-fast and not-too-slow as the toxicity builds, but the discontinuation symptoms are killer, too)

 

You're also not the first to be triggered by TMS.  You can read what others have experienced, here:  http://survivinganti...ic-stimulation/

 

I'm a little nervous about something that claims to be so precise - you put the magnetic paddles over certain regions of the brain - but - is that really where the "dysfunction" is?  They know so little about the brain - I think TMS is a last ditch measure - someday, perhaps, it will be refined to the point that it might actually be more precise and useful, but that day is not now.  It's like "phrenology for nerds" or something.

 

So - um, I guess it would be safe to say you're feeling iatrogenically damaged?  I'm sorry to hear that, but - if you are awakened to that fact, it is a huge part of the battle!

 

Here's a list of potential withdrawal symptoms (which would overlap with toxicity symptoms too - I'll explain that in a moment):  http://survivinganti...ptom-checklist/

 

Here's my personal theory about psych drug symptoms.  There are uptake symptoms, those weird feelings you get in the first two weeks as your neurons are "getting used to" the drug.  Then, there's the "side effects" (which we just call "effects") which can involve toxicity and serotonin syndrome.  Then there's the withdrawal effects.  

 

As serotonin/norepinephrine affects the whole body - and when you take a pill, it doesn't just go straight to the depressed part of your brain, and fix only that.  (which is why I think that TMS is like using a hammer to kill a flea, too).  

 

"Effects" from these drugs can mimic immune system disorders, like Lyme, MS, Lupus, etc.  http://survivinganti...sri-withdrawal/

 

as well as causing dystautonomia:  Dysautonomia / Autonomic Dysregulation

 

We don't really care about your diagnoses.  They seem to be made up psychiatric fictions (I do have proof for that, but won't go into it here, I'll let you read around and draw your own conclusions).  I myself was convinced, by meeting my genetic family, that there was NO WAY that I didn't have a genetic psychiatric illness - but here I am, 6 months off the drugs - and - almost "normal."  I still suffer from the long term effects of damage and surgeries performed on me while on the drugs (I just submitted, I thought that was what you do!)  Instead, I have had to learn a lot about interpersonal relationships, communication skills, and all the ways I sabotaged my own well-being, and hurt those around me.

 

Anyhow, it's the symptoms that are important to track in here.  And that helps us point you to helpful topics where others have talked about the same symptoms.  

 

Nothing you've said here is unusual for withdrawal syndrome, or for toxicity, either.  I think, rather than toxicity, you have just had so many changes that your nervous system is tired of being bounced around like a basketball.  It would probably be a good idea to find a "comfortable dose" and hold there for awhile, likely around a month.

 

It sounds like you are finding the balance in your reinstatement. Good for you for listening to your body and finding a dose that is working for you.  For now.  You may find that it "poops out" quickly, so you may need to keep doing microtapers to keep finding the right dose for you.  If you can, wait until you settle, then wait another week after that before doing your next taper - this can be 3-5 weeks.

http://survivinganti...or-5-decreases/

 

Because the pharma companies don't give us the doses we need to taper properly, we have to often make up our own.  Most people choose liquid, you are on effexor, which means you will be a bead counter:  Tips for tapering off Effexor (venlafaxine)

 

There are several bead counters here, and they have all kinds of tips - like black velvet cloth, trays to hold the beads, a seed measurer for counting beads, and even a scale to weigh the beads.

 

Please taper only one drug at a time.  Think of this as a science experiment - it is important to only change one variable at a time, so that you know what is causing the problems.

 

Please keep track of your symptoms, and times that you have them, in relationship to the times that you take your drugs.

 

Welcome to SA!  Please, read the links provided and ask questions, we'll try to get back to you as soon as we can!


"Easy, easy - just go easy and you'll finish." - Hawaiian Kapuna

 

Holding is hard work, holding is a blessing. Give your brain time to heal before you try again.

 

My suggestions are not medical advice, you are in charge of your own medical choices.

 

A lifetime of being prescribed antidepressants that caused problems (30 years in total). At age 35 flipped to "bipolar," but was not diagnosed for 5 years. Started my journey in Midwest United States. Crossed the Pacific for love and hope; currently living in Australia.   CT Seroquel 25 mg some time in 2013.   Tapered Reboxetine 4 mg Oct 2013 to Sept 2014 = GONE (3 years on Reboxetine).     Tapered Lithium 900 to 475 MG (alternating with the SNRI) Jan 2014 - Nov 2014, tapered Lithium 475 mg Jan 2015 -  Feb 2016 = GONE (10 years  on Lithium).  Many mistakes in dry cutting dosages were made.

 

Currently Lithium Orotate 1.67 mg only.  I will re-evaluate this supplement in 2017.

 

I have been psych drug FREE since 1 Feb 2016!


#6 FeralUrban

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Posted 21 June 2016 - 02:38 PM

Thanks for the responses. There is a lot to read and think about. Both things I do very slowly! 

I got my Magnesium out and started taking it. 

I realize I'm going to have to work at finding the reinstatement dose that makes it possible for me to walk/move and not be in a state of rage (my two worst DS symptoms), whilst at the same time, not making the neurological pain (my worse toxicity symptoms) too bad. I don't know how well that will go. Will talk to my psychiatrist tonight about dose adjustment possibilities.   Once I find something I can tolerate (the balance between not too much nerve pain and hopefully no DS rage and minimal movement issues) I will take your advice and stay there for a while before trying to decrease. Let my system have no changes, and rest, rest, rest.
 
I am feeling this is iatrogenic. And feeling pretty upset about that, first because I cooperated.  In 1992 psych meds and day programs, Section 8, disability, all that SAVED MY LIFE.  I had an extremely violent childhood and very severe PTSD. Childhoods like mine mess up your entire physiology and brain chemistry. It was my only real option at that point. And now, 24 years later I feel my health has been completely destroyed. And this year has been a situation that went unrecognized as serotonin toxicity by numerous doctors who should have known, despite being a very extreme health crisis daily for over 12 weeks.

Regarding TMS:

 

TMS is a last ditch treatment. When I had it 3 years ago I had been a deep depression for 3 years. It worked. It woke me up and I came alive.  The criteria for treatment is at least 3 failed anti-depressants, and a high rating score for depression. I had it again this year because last September my sister closest in age to me died, and for reasons I won't get into here, her death really hit me extremely hard. I started to slide into depression in the winter and went back to TMS. It did abort the slide into deep depression. But it also, apparently, coincidentally triggered a very intense exponential curve of nerve pain and migraine pain with a new "level 10 pain" every week. Since a lot of the effect of TMS is "post treatment" the escalation didn't really kick in until I had completed my course of treatments.
 
TMS is not exactly a sledge hammer. ECT is a sledge hammer. ECT, being electricity can't go through your skull, it goes through your cranial sutures (joints between the bony plates of the skull.) It goes into your entire brain, and depolarizes all your neurons, in effect a rapid shut down and reboot. TMS, being a magnetic pulse that can go right though your bones is applied to a 2-3 centimeter circumference area on your left frontal cortex that controls mood. It pulses and switches the neurons on and off, making them "stronger" in the same way that reps with weights at the gym would make your muscles stronger. It also increases the "Bioavailability" of antidepressants, by making your neurons more sensitive to them and decreasing the blood bran barrier. 
 
I think I have worked out my signature lines to the best of my ability. If there is anything I can leave out of there, let me know -- as I think it's way to much for anyone to read. ON the other hand if it needs more I guess I can't because I'm close to my max # of lines!

I will ask again -- does anyone know if cannabis is serotinergic?

 

Thanks again.


2002 to 2016 Venlafaxine ER 225mg.  2013 TMS treatments triggered nerve pain in face, arm, back.  2016 TMS round ending Feb 1 Central Nerve Pain and and sub-acute serotonin toxicity compounded by Imitrex.  April-June tapered over 3 months from 225 to 0. Reinstated 6/20/16 21.5 nonER 2x day. 7/7/16-37.5mg; 7/17/16-36.6; 7/22/16-33.75; 8/22/16 32.6mg, 9/11/16-28.9mg, 9/25/16-25mg, 12/3/16-19.4mg, 12/18/16-18.5 holding.  OTHER DAILY PHARMACEUTICALS:   *Oxcarbazepine 150 mg 2x/day since mid 2015, *Naproxen 220mg 3x/day as an antidepressant and for pain since 2012, *Levothyrozine 75mcg since 2008 (hypothyroid), *Levothyronine 5 mpg 2x/day since 2012 (hypothyroid) *montelukast SOD 10 mg for asthma since 2014, Advair 250/50 2x daily, [DX 11/16 Felodopine 5mg since 2006,DX combivent 8/1/16] *MEDICAL MARIJUANA for neuropathic pain:CBD oil 25 mg 3-4 x day, THC tincture a few drops: 1/4 tsp 0-3x/day, vaporize CBD for breakthrough pain, CBD concentrate for severe pain.  PRN MEDS *Valium 5 mg PRN up to 4/day for muscle spasms, usually 1-2 x/ day. *Low dose Ketamine nasal spray for severe pain, and also finding 1 dose calms bad WD quickly. HERBAL TINCTURES: burdock, lobelia, turmeric, white willow. CURRENT SUPPLEMENTS:  *Methylated B vitamins, *Vitamin D 5000 iu, Alpha Lipoid Acid, Neti pot. [DX 6/13/16 promethazine suppository + 2 OTC Benadryl for severe pain N Acetyl Cytine for asthma1992-2002, over 20 different psych meds. 2012-2016 Eliminated 7 meds 1 at a time DX Plaquenil DX Spironolactone DX Lunesta, DX Ativan,  + others


#7 SquirrellyGirl

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Posted 21 June 2016 - 02:57 PM

Hi Feral, 

 

I noticed that you said you psych said two take 20 mg IR ven twice a day, and that you took a 25 mg dose last night, and half that much this morning.  So, you won't be a bead counter after all LOL!  It may be that the reinstatement was too large.  We usually start people off with 1 mg as a teaser, to test the waters for adverse reactions that may develop once the nervous system has been sensitized.  Four days to reach a steady state and a few more to see what the nervous system is going to do about it, and then titrate up as necessary.  This would be a better approach than fiddle-faddling around with larger doses trying to hit the mark.  Your system needs stability, but until we come to a dosage that will be good enough, it is probably best to sneak up on it, that is if you can handle the withdrawal in the meantime, waiting for improvement.  We just don't want to bounce you around.

 

Also, you had tried a small reinstatement of Prozac and said that 3 mg made you feel awful within four hours but better the next day. I'm assuming you only took the one dose?  I'm having trouble seeing if Prozac was one you had been on for any length of time prior to Ven.

 

Thank you for the description about TMS - I am not too familiar with it so that taught me something!

 

With your difficult childhood, I can see why there was PTSD and depression.  I took the pills for about 20 years thinking I needed them for an "imbalance" since my family tree is riddled with depression and anxiety, but I also think that rather than genetic propensities, families pass on poor parenting/coping skills which lead us to depression as a "solution." Anyway, I hope that once you have healed from the iatrogenic damage done to you in the name of psychiatry, you will explore non-drug methods of dealing with emotional problems - heck, you can start now!  Non-drug techniques to cope with emotional symptoms

 

I refer to that link even when it isn't about withdrawal neuro emotions, because those techniques are good for everyone to learn how to deal with emotions and stress.

 

As for cannabis, if it is the higher THC version, it can cause depression at higher doses.  Yes, it affects serotonin:  https://www.scienced...71023183937.htmand http://www.forbes.com/sites/alicegwalton/2012/01/11/the-neuroscience-of-pot-researchers-explain-why-marijuana-may-bring-serenity-or-psychosis/#267beccc3cd0 and http://www.ncbi.nlm.nih.gov/pubmed/17508987

 

CBD seems to be more therapeutic.

 

SG


Prozac 1995-1999, don't remember the dosage; Wellbutrin 1999-2002? Don't remember dosage though it was in the 300 mgs range
Effexor XR 2002-2014 up to 225 mg at one point, down to 37.5 mg towards end but back up to 75 mg in 2014; now realize I had W/D as I dropped down, memory very poor about history.  Did fast taper, don't remember details, around August 2014.
Took Sam-E 200 mg AM and 500 mg L-tryptophan PM Sept.2014 to January 2015

Doing poorly, put on Viibryd 10 mg for 1 wk, 20 mg for several days, BAD ANXIETY, fast taper to 0 in a week; back on Sam-E 200 mg AM and L-tryptophan 500 mg PM until April 10, 2015; doing very badly, put on Remeron 7.5 mg start April 15-April 30, 2015; Increased Remeron from 7.5 mg/day to 37.5 mg by May 22, 2015; still doing very badly,

June 1. 2015 Reinstated Effexor XR 37.5 mg, Remeron dropped to 30 mg PM. Immediate relief of symptoms, like nothing had ever happened!  On p-doc's orders went up to 75 mg Effexor June 11-12, then back to 37.5 mg when I realized all the hell I had been through before was WD from Effexor!  Joined SA and began tapering both too soon one month later.

8/22/15: Effexor to 30.75 mg, Remeron to 22 mg. 9/9/15 Effexor 30 mg/Remeron 21 mg. 9/24/15: Remeron 19 mg. 10/25/16: Remeron 17 mg. 11/14/15:  Effexor 28.5 mg 12/2/15: Remeron 16 mg. 12/5/15: Effexor 28.1 mg. 12/17/15: Remeron 15 mg. 1/26/16: Remeron 14 mg. 3/22/16, Remeron 13.5 mg and Effexor 25.9 mg (had nudged it down by fraction of a mg since Dec).  4/28/16: Remeron 13 mg, Effexor 25.5 mg.  5/21/16: Remeron 12 mg, Effexor 24.75 mg.  6/17/16, Effexor 23.25 mg, Remeron 11.6 mg. 7/12/16:  Remeron 11 mg, Effexor 22.12 mg.  9/22/16:  Effexor 19.5 mg, Remeron 9 mg.  As of 4/12/17:  Effexor 12.4 mg  Remeron 5.9 mg.

 

My intro: http://survivinganti...e-2#entry196679

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.


#8 Altostrata

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Posted 21 June 2016 - 05:45 PM

Welcome, FeralUrban.

 

Please put ALL the drugs you take in the Drug Interactions Checker http://www.drugs.com...teractions.html
and copy and paste the results in this topic.
 

You may wish to do this for the drugs you were taking when your "serotonin toxicity" started. I am dubious that TMS caused it; more likely, it was a combination of drugs. (You may also have other adverse reactions to TMS.) You seem to be rather heavily medicated in general.

 

Triptans in combination with antidepressants and other serotonergics definitely risk serotonin toxicity.

 

Going on and off neurologically active drugs over the years can sensitize your nervous system to all drugs, herbs, and even supplements -- such as B vitamins. Autonomic dysfunction from this can cause body pain and other symptoms.

 

You may find acupuncture helpful for pain. Make sure the practitioner understands that you do NOT want treatment for "depression" as those treatments tend to be stimulating and your system needs the opposite -- calming.

 

This topic Tips for tapering off Effexor (venlafaxine) explains how to take small amounts of venlafaxine as well as how to taper off.

 

Rather than taking 25mg Effexor XR once a day, you may wish to try 10mg immediate-release venlafaxine twice a day.

 

Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages. This will help distinguish between withdrawal symptoms and adverse reactions to drugs.

 

This is particularly important regarding your benzo dosing. Benzos can cause rebound symptoms when they wear off or have paradoxical effects. If one's nervous system is hypersensitized, even  occasional benzo use can cause very serious symptoms and make withdrawal syndrome worse.

 

I have no idea what "low dose ketamine" means or how it interacts with the rest of your extensive cocktail. It's very important you keep notes about all your drug use to see what's causing what.

 

Yes, Parkinsons-like symptoms can be part of withdrawal syndrome. Marijuana affects numerous systems.


This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

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#9 JanCarol

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Posted 21 June 2016 - 08:50 PM

Thank you for updating your signature.  That is a lot of information to take in!
 

I wonder how much of your pain is induced by use of psych drugs + TMS?  There are many here who have horrible muscle akathisia, dyskinesia, parathesia, dystonia, etc. as induced by the drugs.  http://survivinganti...nia-news-to-me/

 

Your cocktail for DS seems excessively complicated.  Promethazine is a psych drug.  Benadryl is a precursor to many psych drugs (and is likely a contributing factor to my own "diagnosis.").  It is famous for going paradoxical with long term use.  Ketamine is a complicated beast, and while you only take it nasally, sits right in the middle of all of those Monoamines - affecting the same GABA system that your highly addictive valium does.  

 

While herbs are natural, they are often contraindicated, especially in withdrawal.  When you check your drug interactions at:  http://www.drugs.com...teractions.html as Alto requested, be sure and include valerian, kava, and lobelia.  Dr. Lucire from Australia has had people become extremely toxic while taking valerian with their psych drugs (something about liver enzyme pathways - Google "Lucire valerian").

 

Please read our magnesium topic, posted above.  Most people reach for the mag bottle to find out it is mag oxide.  This is akin to chewing rocks for their magnesium content - only a tiny amount actually gets through.  Additionally, ALL B-vitamins, regardless of your methylation status or the quality of the vitamins can be overstimulating in withdrawal.

 

Add fish oil, and consider turmeric as a natural anti-inflammatory.  Some of us can take tart cherry for pain (but please, only change one variable at a time!  Your high levels of NSAID and willow bark are just begging for you to go cascading into stomach acid problems, or GI tract bleeding.  Which will result in more drugs.  As it is, your high levels of NSAID can be CAUSING your asthma symptoms to escalate.  (when I buy ibuprofen at the chemist, they always ask:  how is your asthma? because it is a concern that is not mentioned for OTC drugs)

 

If I were you, I'd be inclined to reduce the number of things you put in yourself - medical and natural - and see if that helps settle some of the worst of the symptoms.  Please keep a stable dose on the venlafaxine, remeron, oxcarbazapine, and valium.  Having symptoms means that your nervous system is upset and needs to settle.

 

If you can, dump the herbs, b-vitamins, benadryl, promethazine, ketamine, - but not all at once.  Take one away each week.  Make notes of how your symptoms change.   These are complicating factors, and may make it more difficult to come off the other drugs.

 

Make only one change - addition or subtraction - of your "extras" - per week.  This is a complex process, like turning a giant ocean liner around in high seas.  We need to know which variables are connected to which symptoms, so slow and steady changes are vital towards you healing process.  3 KIS's Keep It Simple, Slow, Stable

 

Is your coconut oil cannabis raw?  Or cooked?  If raw, you need not worry about THC.  But if you are vaping, you do.  Apparently those of you who live in medical cannabis states have choices of strains.  Choose high CBD, low THC.  I know, you don't get as "high," but as a yoga teacher who is using it for pain control, that shouldn't matter as much.

 

Look to - as a yoga teacher you can do this - Non-Drug Techniques for Dealing wth Physical Pain

(nice post on pranayam, btw)


"Easy, easy - just go easy and you'll finish." - Hawaiian Kapuna

 

Holding is hard work, holding is a blessing. Give your brain time to heal before you try again.

 

My suggestions are not medical advice, you are in charge of your own medical choices.

 

A lifetime of being prescribed antidepressants that caused problems (30 years in total). At age 35 flipped to "bipolar," but was not diagnosed for 5 years. Started my journey in Midwest United States. Crossed the Pacific for love and hope; currently living in Australia.   CT Seroquel 25 mg some time in 2013.   Tapered Reboxetine 4 mg Oct 2013 to Sept 2014 = GONE (3 years on Reboxetine).     Tapered Lithium 900 to 475 MG (alternating with the SNRI) Jan 2014 - Nov 2014, tapered Lithium 475 mg Jan 2015 -  Feb 2016 = GONE (10 years  on Lithium).  Many mistakes in dry cutting dosages were made.

 

Currently Lithium Orotate 1.67 mg only.  I will re-evaluate this supplement in 2017.

 

I have been psych drug FREE since 1 Feb 2016!


#10 FeralUrban

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Posted 24 June 2016 - 09:17 AM

Thank-you moderators for your thoughts.

 

I finally did the drug interaction checker and got some key info. STOP PROMETHAZINE AND BENADRYL! Both were given to me to control the severe neurological pain, and they did work, but they also field the serotonin toxicity!

 

Full Med Interaction info here

 

I've been working on digesting the info you all offered, and will respond when I can.

 

I'm currently on 12.5 non-ER venlafaxine. Having low level neurological pain, and low level withdrawal symptoms. It doesn't seem I can eliminate one without making the other worse.  

 

I have found that the non-ER venlafaxine is a strict master about taking it promptly every 12 hours. I will start using an alarm to make sure I take it promptly at 8 am/  pm. This morning I woke up late and was in F-ville: poor coordination, things I was looking at just looked wrong in a very irritating way, headache like a bad hangover.

 

I am pretty depressed, but this feels like I am depressed as reaction to finding myself in this corner, which was "facilitated" by doctors who were supposedly helping me. And depressed by  the good day / bad day phenomenon - getting caught in either reality, not being as fluid about the ever changing nature of experience & reality.

 

And super discouraged upon realizing that this is going to be a long tough haul to find my way out of this maze. 

 

Thanks again for all your help!


2002 to 2016 Venlafaxine ER 225mg.  2013 TMS treatments triggered nerve pain in face, arm, back.  2016 TMS round ending Feb 1 Central Nerve Pain and and sub-acute serotonin toxicity compounded by Imitrex.  April-June tapered over 3 months from 225 to 0. Reinstated 6/20/16 21.5 nonER 2x day. 7/7/16-37.5mg; 7/17/16-36.6; 7/22/16-33.75; 8/22/16 32.6mg, 9/11/16-28.9mg, 9/25/16-25mg, 12/3/16-19.4mg, 12/18/16-18.5 holding.  OTHER DAILY PHARMACEUTICALS:   *Oxcarbazepine 150 mg 2x/day since mid 2015, *Naproxen 220mg 3x/day as an antidepressant and for pain since 2012, *Levothyrozine 75mcg since 2008 (hypothyroid), *Levothyronine 5 mpg 2x/day since 2012 (hypothyroid) *montelukast SOD 10 mg for asthma since 2014, Advair 250/50 2x daily, [DX 11/16 Felodopine 5mg since 2006,DX combivent 8/1/16] *MEDICAL MARIJUANA for neuropathic pain:CBD oil 25 mg 3-4 x day, THC tincture a few drops: 1/4 tsp 0-3x/day, vaporize CBD for breakthrough pain, CBD concentrate for severe pain.  PRN MEDS *Valium 5 mg PRN up to 4/day for muscle spasms, usually 1-2 x/ day. *Low dose Ketamine nasal spray for severe pain, and also finding 1 dose calms bad WD quickly. HERBAL TINCTURES: burdock, lobelia, turmeric, white willow. CURRENT SUPPLEMENTS:  *Methylated B vitamins, *Vitamin D 5000 iu, Alpha Lipoid Acid, Neti pot. [DX 6/13/16 promethazine suppository + 2 OTC Benadryl for severe pain N Acetyl Cytine for asthma1992-2002, over 20 different psych meds. 2012-2016 Eliminated 7 meds 1 at a time DX Plaquenil DX Spironolactone DX Lunesta, DX Ativan,  + others


#11 JanCarol

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Posted 24 June 2016 - 08:39 PM

Wow, Feral, thanks for checking back.  

 

That's one um, impressive (??) list of drug interactions.  I'm glad it pointed you to some of the key players in your symptoms.

 

Please remember to do all discontinuations gradually, and one at a time.  You'll feel gradually better as you do!

 

Good day / bad day - that you are having good days at all is a very promising sign.  Recovery happens in Waves and Windows

 

Maybe if you get out from under the Promethazine and benadryl, you will stabilize and be able to smoothly taper again.  Wait until all of your changes have settled down for at least a month before continuing to taper.

 

As you've noticed, venlafaxine is a difficult chain to break.  Easy does it!  It does get better!


"Easy, easy - just go easy and you'll finish." - Hawaiian Kapuna

 

Holding is hard work, holding is a blessing. Give your brain time to heal before you try again.

 

My suggestions are not medical advice, you are in charge of your own medical choices.

 

A lifetime of being prescribed antidepressants that caused problems (30 years in total). At age 35 flipped to "bipolar," but was not diagnosed for 5 years. Started my journey in Midwest United States. Crossed the Pacific for love and hope; currently living in Australia.   CT Seroquel 25 mg some time in 2013.   Tapered Reboxetine 4 mg Oct 2013 to Sept 2014 = GONE (3 years on Reboxetine).     Tapered Lithium 900 to 475 MG (alternating with the SNRI) Jan 2014 - Nov 2014, tapered Lithium 475 mg Jan 2015 -  Feb 2016 = GONE (10 years  on Lithium).  Many mistakes in dry cutting dosages were made.

 

Currently Lithium Orotate 1.67 mg only.  I will re-evaluate this supplement in 2017.

 

I have been psych drug FREE since 1 Feb 2016!


#12 Altostrata

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Posted 25 June 2016 - 01:47 PM

Do you literally have alternating good days and bad days? Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages.


This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

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#13 FeralUrban

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Posted 27 June 2016 - 07:00 PM

What is happening is a bit like walking on a plank and I veer one way -- discontinuation symptoms, and then the other -- serotonin toxicity symptoms.

Yesterday I had neurological pain on the right side of my body, at a level 4-5 (take in mind that my level "10" pain is extreme) but I also had nausea, which I consider to be a DS symptom.  

 

I need to work on a list of both types of symptoms and track daily. I was tracking daily for several months during the toxicity phase of this hell, and that was what led to the insight of serotonin syndrome. So  I understand the value. 

 

Just got to get myself up to the task of creating a new spreadsheet. I do have the one you have on this forum, but I'm going to need to add my own unique stuff that seems toxicity related. 

 

Today, my major accomplishment was getting to the apple store and getting a new iPhone -- I got a lemon in December, and it has taken this long to have the time and will to get my husband to drag me in there. AND we went to therapy together and explored the way that my being irritable all the time and his anxiety are playing together to increase the frequency of spats. 


2002 to 2016 Venlafaxine ER 225mg.  2013 TMS treatments triggered nerve pain in face, arm, back.  2016 TMS round ending Feb 1 Central Nerve Pain and and sub-acute serotonin toxicity compounded by Imitrex.  April-June tapered over 3 months from 225 to 0. Reinstated 6/20/16 21.5 nonER 2x day. 7/7/16-37.5mg; 7/17/16-36.6; 7/22/16-33.75; 8/22/16 32.6mg, 9/11/16-28.9mg, 9/25/16-25mg, 12/3/16-19.4mg, 12/18/16-18.5 holding.  OTHER DAILY PHARMACEUTICALS:   *Oxcarbazepine 150 mg 2x/day since mid 2015, *Naproxen 220mg 3x/day as an antidepressant and for pain since 2012, *Levothyrozine 75mcg since 2008 (hypothyroid), *Levothyronine 5 mpg 2x/day since 2012 (hypothyroid) *montelukast SOD 10 mg for asthma since 2014, Advair 250/50 2x daily, [DX 11/16 Felodopine 5mg since 2006,DX combivent 8/1/16] *MEDICAL MARIJUANA for neuropathic pain:CBD oil 25 mg 3-4 x day, THC tincture a few drops: 1/4 tsp 0-3x/day, vaporize CBD for breakthrough pain, CBD concentrate for severe pain.  PRN MEDS *Valium 5 mg PRN up to 4/day for muscle spasms, usually 1-2 x/ day. *Low dose Ketamine nasal spray for severe pain, and also finding 1 dose calms bad WD quickly. HERBAL TINCTURES: burdock, lobelia, turmeric, white willow. CURRENT SUPPLEMENTS:  *Methylated B vitamins, *Vitamin D 5000 iu, Alpha Lipoid Acid, Neti pot. [DX 6/13/16 promethazine suppository + 2 OTC Benadryl for severe pain N Acetyl Cytine for asthma1992-2002, over 20 different psych meds. 2012-2016 Eliminated 7 meds 1 at a time DX Plaquenil DX Spironolactone DX Lunesta, DX Ativan,  + others


#14 Altostrata

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Posted 27 June 2016 - 07:23 PM

You are taking a massive number of substances that interact.
 
Calling it serotonin toxicity may be a red herring, but the serotonergics could be a good place to start in reducing your drug burden.
 
To the extent that you added neurologically active substances like kava kava to your cocktail, you might taper off those, too.
 
Substance that are metabolized by the liver, as are many psychiatric drugs, cause metabolic traffic jams and drug-drug interactions. See 
http://www.drugguide..._Should_I_Care_

Drug Interactions: Cytochrome P450 Drug Interaction Table
 
This can also damage the liver, which is on the right side of your body. If your doctors have not been monitoring this, they have been remiss about this as well.
 
However, liver metabolism is only part of the story in drug-drug interactions. The rest is not well understood, but if you can envision that every organ in your body is bathed in these foreign chemicals, you might start to get the idea.


This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

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#15 FeralUrban

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Posted 10 July 2016 - 11:22 AM

Update...

 

I reinstated 12.5 mg venlafaxine non-ER On June 20, 2016, It stopped the severe movement disorder and rage attacks. However I still had nausea, bowel issues, crying, ringing ears, headache, body aches, etc. It also felt like the non-extended release was too uneven throughout the day. So I went back onto 37.5 ER venlafaxine on July 7th.. Slowly the discontinuation symptoms are improving. However the neurologic pain has returned with burning nerve pain in the entire right side of my body. I responded by adding CBD hemp oil concentrate, which does  help. Its a good thin, since most of my other pain meds are off the table due to interactions. Trying to be patient. 

 

I've updated my tracking spreadsheet to now include both DX symptoms and neuropathy symptoms and using the graphing feature so I can try to track changes over time. I hated putting it together, even starting from the template I found through this site. I hated thinking about all the symptoms-- depressing to think about how sick I've been. BUT, it has helped me feel like I can identify trends. After all it was my original  pain/meds spreadsheet that helped me realize that there were issues with the medications I had been prescribed. 

 

So alongside the neurologic pain I have dizziness, fatigue, body aches, headaches, and occasionally crying - but that is a big improvement over where I was during my 10 days off of Venlafaxine and a bit of an improvement over the weeks I was on 25 mg per day. I can't see going up to a higher does considering even this moderate increase triggered the neuro- situation. The bump up did make me extremely depressed for a day, but that passed. 

 

I'm wondering -- what wisdom do you all have to share regarding brand name Effexor XR vs. generic venlafaxine ER?  My psychiatrist thinks  this could be a problem. She has been pretty good. Though she knows as little as I do about DX syndrome, she has been on the phone with me for an hour a week at no charge, trying to sort out logical steps. 

 

Also -- I've got really itchy eyes with ***** gunk (sorry), swollen glands and tender sinuses. A bit of asthma. I can't tell if this is allergies (something I do get at this time of year) or the DX syndrome. Or both. Any thoughts on that? It just seems to be going on  longer than usual. 

 

So -- again, brand name vs. generic.

 

Allergy symptoms?

 

And, I just put a long post in the marijuana forum, trying to share my experience and knowledge. There is a  lot of confusion and a general lack of reliable information regarding medical marijuana in general and nothing that I can find on DX syndrome and MMJ.  So I thought putting some of what I've learned in the past 18 months on this site as a potential starting point for others interested in exploring this issue.  Don't worry it's full of  warnings, precautions and caveats.

 

Thanks for being here. 


2002 to 2016 Venlafaxine ER 225mg.  2013 TMS treatments triggered nerve pain in face, arm, back.  2016 TMS round ending Feb 1 Central Nerve Pain and and sub-acute serotonin toxicity compounded by Imitrex.  April-June tapered over 3 months from 225 to 0. Reinstated 6/20/16 21.5 nonER 2x day. 7/7/16-37.5mg; 7/17/16-36.6; 7/22/16-33.75; 8/22/16 32.6mg, 9/11/16-28.9mg, 9/25/16-25mg, 12/3/16-19.4mg, 12/18/16-18.5 holding.  OTHER DAILY PHARMACEUTICALS:   *Oxcarbazepine 150 mg 2x/day since mid 2015, *Naproxen 220mg 3x/day as an antidepressant and for pain since 2012, *Levothyrozine 75mcg since 2008 (hypothyroid), *Levothyronine 5 mpg 2x/day since 2012 (hypothyroid) *montelukast SOD 10 mg for asthma since 2014, Advair 250/50 2x daily, [DX 11/16 Felodopine 5mg since 2006,DX combivent 8/1/16] *MEDICAL MARIJUANA for neuropathic pain:CBD oil 25 mg 3-4 x day, THC tincture a few drops: 1/4 tsp 0-3x/day, vaporize CBD for breakthrough pain, CBD concentrate for severe pain.  PRN MEDS *Valium 5 mg PRN up to 4/day for muscle spasms, usually 1-2 x/ day. *Low dose Ketamine nasal spray for severe pain, and also finding 1 dose calms bad WD quickly. HERBAL TINCTURES: burdock, lobelia, turmeric, white willow. CURRENT SUPPLEMENTS:  *Methylated B vitamins, *Vitamin D 5000 iu, Alpha Lipoid Acid, Neti pot. [DX 6/13/16 promethazine suppository + 2 OTC Benadryl for severe pain N Acetyl Cytine for asthma1992-2002, over 20 different psych meds. 2012-2016 Eliminated 7 meds 1 at a time DX Plaquenil DX Spironolactone DX Lunesta, DX Ativan,  + others


#16 Altostrata

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Posted 10 July 2016 - 12:34 PM

Good to hear that some degree of reinstatement helped.

 

Yes, some people are sensitive to brand differences. But in your situation, where you've made big changes in the drug, it's not likely a small difference such as that in a brand change in the cause of your issues.

 

It sounds to me like 37.5mg Effexor XR is too high a dose. Does the capsule have tiny beads in it? You can open the capsule and reduce your dosage by taking out a specific amount of beads each day, such as 10 beads. (Keep this consistent from day to day or you'll get very confused.) This is also the way to taper. See Tips for tapering off Effexor (venlafaxine)

 

I don't know what the eye symptoms are. Could be an allergic reaction to something else, or a sinus infection.


This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

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#17 FeralUrban

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Posted 10 July 2016 - 06:47 PM

I think, for now, I can live with the increased neuropathic pain for a period of time. It isn't nearly as bad as it was. I won't know what is going on with that, really, until I get off the venlafaxine. 

 

I really need to stabilize the withdrawal, so I can have some possibility of getting off the venlafaxine without lasting withdrawal syndrome. I actually was able to read a bit yesterday, and today I wrote and had some energy to do some ordinary things, so I think the increase back up to 37.5 is helping. But I will, as soon as I feel OK for at least a week, maybe two, start to taper. 

Regarding  brand name vs. generic... It would be a huge battle likely one that I can't win to get the brand name Effexor, and I've been on the generic (same company) for over a year. 

 

I'll try to read up on the liver enzyme system, perhaps if I'm clear headed  tomorrow...


2002 to 2016 Venlafaxine ER 225mg.  2013 TMS treatments triggered nerve pain in face, arm, back.  2016 TMS round ending Feb 1 Central Nerve Pain and and sub-acute serotonin toxicity compounded by Imitrex.  April-June tapered over 3 months from 225 to 0. Reinstated 6/20/16 21.5 nonER 2x day. 7/7/16-37.5mg; 7/17/16-36.6; 7/22/16-33.75; 8/22/16 32.6mg, 9/11/16-28.9mg, 9/25/16-25mg, 12/3/16-19.4mg, 12/18/16-18.5 holding.  OTHER DAILY PHARMACEUTICALS:   *Oxcarbazepine 150 mg 2x/day since mid 2015, *Naproxen 220mg 3x/day as an antidepressant and for pain since 2012, *Levothyrozine 75mcg since 2008 (hypothyroid), *Levothyronine 5 mpg 2x/day since 2012 (hypothyroid) *montelukast SOD 10 mg for asthma since 2014, Advair 250/50 2x daily, [DX 11/16 Felodopine 5mg since 2006,DX combivent 8/1/16] *MEDICAL MARIJUANA for neuropathic pain:CBD oil 25 mg 3-4 x day, THC tincture a few drops: 1/4 tsp 0-3x/day, vaporize CBD for breakthrough pain, CBD concentrate for severe pain.  PRN MEDS *Valium 5 mg PRN up to 4/day for muscle spasms, usually 1-2 x/ day. *Low dose Ketamine nasal spray for severe pain, and also finding 1 dose calms bad WD quickly. HERBAL TINCTURES: burdock, lobelia, turmeric, white willow. CURRENT SUPPLEMENTS:  *Methylated B vitamins, *Vitamin D 5000 iu, Alpha Lipoid Acid, Neti pot. [DX 6/13/16 promethazine suppository + 2 OTC Benadryl for severe pain N Acetyl Cytine for asthma1992-2002, over 20 different psych meds. 2012-2016 Eliminated 7 meds 1 at a time DX Plaquenil DX Spironolactone DX Lunesta, DX Ativan,  + others


#18 scallywag

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Posted 12 July 2016 - 05:17 PM

Feral -- Thanks for your post on MMJ in the cannabis thread, which clearly took a lot of time, energy and attention.  I'm sure other members and those lurking will find it useful.


This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results
Cymbalta (brand name), 60 mg 2012 - 2015; 20 mg to 7 mg in 2016, exact doses and dates in this post;
2017: 6.3 (58 beads) Feb. 1; 5.6 mg (52) Feb. 22; 5.4 mg (50) Mar. 15; 5.1 mg (47) Mar. 25; 4.9 mg (45) Apr. 5; 4.5 mg (42) Apr. 14;
Current dose: 3.5 mg (32) 2017-Apr-26
+ Supplements: fish oil (1500 mg EPA/500 mg DHA), Vitamins: D3, K2, C; Minerals: Mg, Se, Cr, I, V
scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet


#19 FeralUrban

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Posted 13 July 2016 - 02:34 PM

scallywag-  You're welcome! It was for me, really thrilling to be clear headed enough to write such a post. I do hope others will find it helpful.


2002 to 2016 Venlafaxine ER 225mg.  2013 TMS treatments triggered nerve pain in face, arm, back.  2016 TMS round ending Feb 1 Central Nerve Pain and and sub-acute serotonin toxicity compounded by Imitrex.  April-June tapered over 3 months from 225 to 0. Reinstated 6/20/16 21.5 nonER 2x day. 7/7/16-37.5mg; 7/17/16-36.6; 7/22/16-33.75; 8/22/16 32.6mg, 9/11/16-28.9mg, 9/25/16-25mg, 12/3/16-19.4mg, 12/18/16-18.5 holding.  OTHER DAILY PHARMACEUTICALS:   *Oxcarbazepine 150 mg 2x/day since mid 2015, *Naproxen 220mg 3x/day as an antidepressant and for pain since 2012, *Levothyrozine 75mcg since 2008 (hypothyroid), *Levothyronine 5 mpg 2x/day since 2012 (hypothyroid) *montelukast SOD 10 mg for asthma since 2014, Advair 250/50 2x daily, [DX 11/16 Felodopine 5mg since 2006,DX combivent 8/1/16] *MEDICAL MARIJUANA for neuropathic pain:CBD oil 25 mg 3-4 x day, THC tincture a few drops: 1/4 tsp 0-3x/day, vaporize CBD for breakthrough pain, CBD concentrate for severe pain.  PRN MEDS *Valium 5 mg PRN up to 4/day for muscle spasms, usually 1-2 x/ day. *Low dose Ketamine nasal spray for severe pain, and also finding 1 dose calms bad WD quickly. HERBAL TINCTURES: burdock, lobelia, turmeric, white willow. CURRENT SUPPLEMENTS:  *Methylated B vitamins, *Vitamin D 5000 iu, Alpha Lipoid Acid, Neti pot. [DX 6/13/16 promethazine suppository + 2 OTC Benadryl for severe pain N Acetyl Cytine for asthma1992-2002, over 20 different psych meds. 2012-2016 Eliminated 7 meds 1 at a time DX Plaquenil DX Spironolactone DX Lunesta, DX Ativan,  + others


#20 FeralUrban

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Posted 14 July 2016 - 04:04 AM

QUESTION: Does Claritin interact with venlafaxine. Medicine interaction checker seemed to say no, pharmacist said no, but there are are anecdotal reports available online that say yes. 

 

My allergies have been severe this summer, and I've managed to stave off bad asthma using combivent and advair. I do this because when I don't I end  up on steroids and a nebulizer and at home just waiting several weeks to be able to breath normally again. 

For over a month I have had bad sinus congestion,bad eye gunk and irritation, swollen glands, and sore throat.. I"m having a hard time distinguishing all of that from "flu-like symptoms" of withdrawal and desire to clear it up enough that I can feel confident in going forward with a reduction in venlafaxine dose. My eye doctor suggested Claritin and gave me some antihistamine eye drops. 

 

I took one claritin yesterday, and mostly felt tired, slept 3 hours in the afternoon - -but that is not unusual for me lately. I have much less mucus this morning. 

 

Your thoughts would be appreciated.

 

PS -- Yesterday I drove a car for the first time in over 2 months. During the serotonin toxicity phase I couldn't because driving would trigger severe muscle spasms in my legs and set of 2-3 days of additional pain. Then during DX I couldn't think clearly enough, nor could I control my bodily movements. So despite still feeling unwell, this was a big big deal for me. I also find that lately I can read at length. Good thing, because I've finished all the marathon viewing I can stand!  Little triumphs! 


2002 to 2016 Venlafaxine ER 225mg.  2013 TMS treatments triggered nerve pain in face, arm, back.  2016 TMS round ending Feb 1 Central Nerve Pain and and sub-acute serotonin toxicity compounded by Imitrex.  April-June tapered over 3 months from 225 to 0. Reinstated 6/20/16 21.5 nonER 2x day. 7/7/16-37.5mg; 7/17/16-36.6; 7/22/16-33.75; 8/22/16 32.6mg, 9/11/16-28.9mg, 9/25/16-25mg, 12/3/16-19.4mg, 12/18/16-18.5 holding.  OTHER DAILY PHARMACEUTICALS:   *Oxcarbazepine 150 mg 2x/day since mid 2015, *Naproxen 220mg 3x/day as an antidepressant and for pain since 2012, *Levothyrozine 75mcg since 2008 (hypothyroid), *Levothyronine 5 mpg 2x/day since 2012 (hypothyroid) *montelukast SOD 10 mg for asthma since 2014, Advair 250/50 2x daily, [DX 11/16 Felodopine 5mg since 2006,DX combivent 8/1/16] *MEDICAL MARIJUANA for neuropathic pain:CBD oil 25 mg 3-4 x day, THC tincture a few drops: 1/4 tsp 0-3x/day, vaporize CBD for breakthrough pain, CBD concentrate for severe pain.  PRN MEDS *Valium 5 mg PRN up to 4/day for muscle spasms, usually 1-2 x/ day. *Low dose Ketamine nasal spray for severe pain, and also finding 1 dose calms bad WD quickly. HERBAL TINCTURES: burdock, lobelia, turmeric, white willow. CURRENT SUPPLEMENTS:  *Methylated B vitamins, *Vitamin D 5000 iu, Alpha Lipoid Acid, Neti pot. [DX 6/13/16 promethazine suppository + 2 OTC Benadryl for severe pain N Acetyl Cytine for asthma1992-2002, over 20 different psych meds. 2012-2016 Eliminated 7 meds 1 at a time DX Plaquenil DX Spironolactone DX Lunesta, DX Ativan,  + others


#21 KarenB

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Posted 14 July 2016 - 09:36 PM

Have a look through this thread about antihistamines - lots of discussion there. 

 

I know that my husband was able to almost completely put an end to his hay-fever allergies by stopping eating white flour and sugar, and swtiching to properly soaked sourdough bread and soaked grains. 


2010 May Fluoxetine 20mg. Raging mostly stops, become more functional.
2011 February Escitalopram 10mg (sudden switch). 2012 January Escitalopram 20mg.  2013 Early June Feeling great, decide to taper. Doc advises alternate days 20mg/10mg for 4 weeks.  Late June Steady. Drop to 10mg daily. Early July Not coping, raging, flu symptoms, shaky, anxious, low, spaced-out, self-destructive.  Mid July Return to alternate days 20mg/10mg - minimal improvement. Early August Return to full dose 20mg. Lost.
2014 February Switch to Venlafaxine. (First reduced Esc. to 10mg/day for a week) Feb-April Lost, 'light' self-harm, exhausted.
April Increase Ven. to 150mg/day. Dizzy. July 75mg twice a day to improve dizziness. Deep depression remains.  2015 Feb Vigilant dose spacing partially eases dizziness. Mar Switch to Effexor 75mg 2x/day. May Cut 10% to 135mg - bad w/d 2 mths, held 1 mth.  Aug 1.3% cut - bad 1mth, held 1mth. Oct 4 wkly 0.4% cuts held 6 weeks. Jan 2016 2 wkly 0.4% cuts. 8 month hold. Sept Wkly cuts: 0.5%, 3 1% cuts.  Oct 4 wkly 1% cuts, hold 3-4 weeks.
Supplements: Fish oil, vitamins E & C, magnesium, iron, MSM, oat-straw tea, nettle tea.  My story of healing: ContinuedHealing

***I am not a doctor or counselor; please do your own research and be prepared to take responsibility for decisions you make.*** 

           'The possibility of renewal exists so long as life exists.'  Dr Gabor Mate.


#22 FeralUrban

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Posted 18 July 2016 - 12:48 PM

I only took the Claritin for 2 days. It triggered neuropathic pain. Using neti pot, pazeo, combivenet and advair for allergies.

I've been feeling well enough to overdo it! <sigh> Yesterday was a delight, but I'm paying today. 

 

I created a proposed method of tapering for myself off the 37.5 venlafaxine ER -- remove 1 bead at a time every 5 days, or longer depending on how I feel. I may or may not be able to do this, but psychologically  I needed a timeline. So if that schedule works I'll be off Venlafaxine in late January. 

 

QUESTION: Oxcarbazepine taper before, after, or during venlafaxine taper off Venlafaxine?

 

I really studied my drug interaction checker report and decided that I have two other drugs that are priority to remove: ketamine nasal spray for severe pain -- although I'm rarely using it. I'll see how I can do with this. Hopefully I just won't have pain that is that severe. I am finding the CBD hemp oil works, just not as quickly.

 

The other one is oxcarbazepine. I've read on the tapering forums about dong this as a 10% taper. And I read about keeping the "brakes" on while doing an antidepressant taper. I've also read the thread about single vs multiple drug tapers. 

 

I'm not sure where oxcarbazepine fits -- it is a "brake" on the CNS, yes? So keep it in place?  I'd so like to toss it. BUT I MUST get off Venlafaxine as it clearly causes neuropathic pain and this has been a huge issue for me and the neuropathy also seems to affect my Autonomic Nervous System. 

Replies appreciated.


2002 to 2016 Venlafaxine ER 225mg.  2013 TMS treatments triggered nerve pain in face, arm, back.  2016 TMS round ending Feb 1 Central Nerve Pain and and sub-acute serotonin toxicity compounded by Imitrex.  April-June tapered over 3 months from 225 to 0. Reinstated 6/20/16 21.5 nonER 2x day. 7/7/16-37.5mg; 7/17/16-36.6; 7/22/16-33.75; 8/22/16 32.6mg, 9/11/16-28.9mg, 9/25/16-25mg, 12/3/16-19.4mg, 12/18/16-18.5 holding.  OTHER DAILY PHARMACEUTICALS:   *Oxcarbazepine 150 mg 2x/day since mid 2015, *Naproxen 220mg 3x/day as an antidepressant and for pain since 2012, *Levothyrozine 75mcg since 2008 (hypothyroid), *Levothyronine 5 mpg 2x/day since 2012 (hypothyroid) *montelukast SOD 10 mg for asthma since 2014, Advair 250/50 2x daily, [DX 11/16 Felodopine 5mg since 2006,DX combivent 8/1/16] *MEDICAL MARIJUANA for neuropathic pain:CBD oil 25 mg 3-4 x day, THC tincture a few drops: 1/4 tsp 0-3x/day, vaporize CBD for breakthrough pain, CBD concentrate for severe pain.  PRN MEDS *Valium 5 mg PRN up to 4/day for muscle spasms, usually 1-2 x/ day. *Low dose Ketamine nasal spray for severe pain, and also finding 1 dose calms bad WD quickly. HERBAL TINCTURES: burdock, lobelia, turmeric, white willow. CURRENT SUPPLEMENTS:  *Methylated B vitamins, *Vitamin D 5000 iu, Alpha Lipoid Acid, Neti pot. [DX 6/13/16 promethazine suppository + 2 OTC Benadryl for severe pain N Acetyl Cytine for asthma1992-2002, over 20 different psych meds. 2012-2016 Eliminated 7 meds 1 at a time DX Plaquenil DX Spironolactone DX Lunesta, DX Ativan,  + others


#23 FeralUrban

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Posted 22 July 2016 - 06:03 PM

Yesterday I again over did it. I was feeling so good. Gardening -- I finally planted the 24 cherry tomatoes I started from seedlings in the local community garden, with hopes of giving them to a friend who feeds the homeless in our city. Then  I went to a Black Lives Matter Action Day march to support the Community Safety Act -- aimed at eliminating bias from police interactions. It was lead, quite inspiringly by a group of young people. and the police were very respectful as well. It gave me hope. 

Between the two activities I triggered a neurological  pain attack that I'm still coping with. Nerve pain in the entire right side of my body.  My withdrawal symptoms had been down to nearly nothing (in a comparative sort of way) and I just got excited by the possibility of doing stuff and didn't take into account that activity could make the neuro-pain worse for me. This is challenging because my old med standbys for this level of pain are no longer a possibility. That is worrisome as it can quite easily accelerate into completely incapacitating pain. I've been using the CBD oil and that's been keeping it in check but not really diminishing it too much. 

 

Today was my planned for 10% step down to 33.75 mg. Since I'd been anticipating this for quite a while I went ahead.  First I nearly lost it trying to count beads. I took me 75 minutes to do 5 capsules. Terribly irritating. My psychiatrist had convinced me that brand name Effexor might be better than the generic. But when I opened them, instead of counting about 40 beads per capsule, there were between 100-150! So small. My vision has been affected by the neurological pain condition, so it was really tough and the damn fkrs kept bouncing around. 

 

I strengthened my resolve to look through this site and did eventually find the post on the special scales you can get and ordered one. I think my general cognitive haze makes it hard for me to navigate here. I look forward to getting the scale and really appreciated the photos of the "how to", so I think I'll be able to manage using it. Hopefully that will help with the measuring out of beads and come before I use up the 4 capsules I managed to fill today.

 

Since I didn't receive a response to my previous question regarding oxcarbazepine, I sort of decided for myself to save going off that for later. Though I know that it definitely makes the brain haze worse, contributes to physical lack of coordination, dizziness and it is a bad one for interactions with my other meds. Yet, I perceive it to be in the "braking" category, and it supposedly dampens the neuro-pain, though at this point I don't believe a thing regarding the meds my neurologist gave me. 

 

Aside from fatigue and neuro-pain, the main things that happened today with withdrawal was I couldn't focus or get myself together at all. And I got super irritable and felt self-directed loathing and anger. Trying hard to remind myself that it is temporary and a symptom of withdrawal. 

 

Are there any portions of this site that recommend how to handle the irritability / anger?   With me it can escalate into rage and uncontrollable physical violence towards myself. And when it's like that I feel overtaken by it. Can't control it, can't stop it, and I absolutely dread it. So even having a low level experience of  that today was anxiety provoking. 

 

I feel simultaneously very alone and like a big bother, even pain in the ass to all of you.

And then very grateful that this site is here, despite my problems using it. 

 

Sad, angry, and trying to remind myself that this is progress compared to where I was at in Feb-May. 


2002 to 2016 Venlafaxine ER 225mg.  2013 TMS treatments triggered nerve pain in face, arm, back.  2016 TMS round ending Feb 1 Central Nerve Pain and and sub-acute serotonin toxicity compounded by Imitrex.  April-June tapered over 3 months from 225 to 0. Reinstated 6/20/16 21.5 nonER 2x day. 7/7/16-37.5mg; 7/17/16-36.6; 7/22/16-33.75; 8/22/16 32.6mg, 9/11/16-28.9mg, 9/25/16-25mg, 12/3/16-19.4mg, 12/18/16-18.5 holding.  OTHER DAILY PHARMACEUTICALS:   *Oxcarbazepine 150 mg 2x/day since mid 2015, *Naproxen 220mg 3x/day as an antidepressant and for pain since 2012, *Levothyrozine 75mcg since 2008 (hypothyroid), *Levothyronine 5 mpg 2x/day since 2012 (hypothyroid) *montelukast SOD 10 mg for asthma since 2014, Advair 250/50 2x daily, [DX 11/16 Felodopine 5mg since 2006,DX combivent 8/1/16] *MEDICAL MARIJUANA for neuropathic pain:CBD oil 25 mg 3-4 x day, THC tincture a few drops: 1/4 tsp 0-3x/day, vaporize CBD for breakthrough pain, CBD concentrate for severe pain.  PRN MEDS *Valium 5 mg PRN up to 4/day for muscle spasms, usually 1-2 x/ day. *Low dose Ketamine nasal spray for severe pain, and also finding 1 dose calms bad WD quickly. HERBAL TINCTURES: burdock, lobelia, turmeric, white willow. CURRENT SUPPLEMENTS:  *Methylated B vitamins, *Vitamin D 5000 iu, Alpha Lipoid Acid, Neti pot. [DX 6/13/16 promethazine suppository + 2 OTC Benadryl for severe pain N Acetyl Cytine for asthma1992-2002, over 20 different psych meds. 2012-2016 Eliminated 7 meds 1 at a time DX Plaquenil DX Spironolactone DX Lunesta, DX Ativan,  + others


#24 SquirrellyGirl

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Posted 23 July 2016 - 02:56 PM

Feral, I think you are caught up in the obsesive, ruminative thinking that is due to withdrawal, and the thoughts you have shared are very common, to me at least!  You are NOT a bother to us!  You aren't the first to feel that way here and you won't be the last.  Just remember that this site is here for you and everyone like you and me who is trying to navigate our way off these meds, neuro-emotions, neediness and all.

 

Here is a thread about the anger/rage, just so you know you aren't alone and that this, too, is a common feature of withdrawal :-)

 

http://survivinganti...anger-and-rage/

 

SG


Prozac 1995-1999, don't remember the dosage; Wellbutrin 1999-2002? Don't remember dosage though it was in the 300 mgs range
Effexor XR 2002-2014 up to 225 mg at one point, down to 37.5 mg towards end but back up to 75 mg in 2014; now realize I had W/D as I dropped down, memory very poor about history.  Did fast taper, don't remember details, around August 2014.
Took Sam-E 200 mg AM and 500 mg L-tryptophan PM Sept.2014 to January 2015

Doing poorly, put on Viibryd 10 mg for 1 wk, 20 mg for several days, BAD ANXIETY, fast taper to 0 in a week; back on Sam-E 200 mg AM and L-tryptophan 500 mg PM until April 10, 2015; doing very badly, put on Remeron 7.5 mg start April 15-April 30, 2015; Increased Remeron from 7.5 mg/day to 37.5 mg by May 22, 2015; still doing very badly,

June 1. 2015 Reinstated Effexor XR 37.5 mg, Remeron dropped to 30 mg PM. Immediate relief of symptoms, like nothing had ever happened!  On p-doc's orders went up to 75 mg Effexor June 11-12, then back to 37.5 mg when I realized all the hell I had been through before was WD from Effexor!  Joined SA and began tapering both too soon one month later.

8/22/15: Effexor to 30.75 mg, Remeron to 22 mg. 9/9/15 Effexor 30 mg/Remeron 21 mg. 9/24/15: Remeron 19 mg. 10/25/16: Remeron 17 mg. 11/14/15:  Effexor 28.5 mg 12/2/15: Remeron 16 mg. 12/5/15: Effexor 28.1 mg. 12/17/15: Remeron 15 mg. 1/26/16: Remeron 14 mg. 3/22/16, Remeron 13.5 mg and Effexor 25.9 mg (had nudged it down by fraction of a mg since Dec).  4/28/16: Remeron 13 mg, Effexor 25.5 mg.  5/21/16: Remeron 12 mg, Effexor 24.75 mg.  6/17/16, Effexor 23.25 mg, Remeron 11.6 mg. 7/12/16:  Remeron 11 mg, Effexor 22.12 mg.  9/22/16:  Effexor 19.5 mg, Remeron 9 mg.  As of 4/12/17:  Effexor 12.4 mg  Remeron 5.9 mg.

 

My intro: http://survivinganti...e-2#entry196679

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.


#25 FeralUrban

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Posted 02 August 2016 - 06:17 AM

Are there other people on this forum that developed neuropathy from venlafaxine or other drugs?

 

I have damage to my peripheral nervous system, CNS and ANS.

 

The biggest issue is pain that is rather unbearable. Four years before I even realized I needed to get off Venlafaxine I developed neuropathy in the right side of my face, right arm, right upper trunk. Then with meds I was given to manage the pain this past January and TMS, meds that should not be taken with an serotonin med the pain expanded to the entire right side of my body, my lower left leg and was exponentially, stratospherically bad pain. So bad that I would dissociate for days at a time. 

 

​And crippling migraines. (CNS)

 

It also altered my metabolism, so I am assuming Autonomic Nervous system nerve damage. I lost 20 lbs with no change in diet in around 2 months, 10 lbs in the months leading up to that. 

 

Are there other people on this forum that developed neuropathy from venlafaxine or other drugs? Is there a forum within the site that deals with this? 

 

-----------

 

My most recent drop was a 10% drop, and I'm thinking it may have been too much. It's so hard to tell between neurotoxicity and withdrawal. I wish I had a genius wizard to help me through this maze. ******* hating this ****, feeling chaotically disorganized mentally and physically, and emotionally for that matter. Struggling to *get it together* with stuff that I really need to do -- like respond to a a Social Security review of income, sell some stuff so I can have some money - due to being so ill I've contributed $0 to the household since February and we are feeling the squeeze.

Waiting for a scale to come in, so I can weigh. Counting beads is, at times either or both visually challenging and or mentally challenging. I'm hoping weighing works out better for me.


2002 to 2016 Venlafaxine ER 225mg.  2013 TMS treatments triggered nerve pain in face, arm, back.  2016 TMS round ending Feb 1 Central Nerve Pain and and sub-acute serotonin toxicity compounded by Imitrex.  April-June tapered over 3 months from 225 to 0. Reinstated 6/20/16 21.5 nonER 2x day. 7/7/16-37.5mg; 7/17/16-36.6; 7/22/16-33.75; 8/22/16 32.6mg, 9/11/16-28.9mg, 9/25/16-25mg, 12/3/16-19.4mg, 12/18/16-18.5 holding.  OTHER DAILY PHARMACEUTICALS:   *Oxcarbazepine 150 mg 2x/day since mid 2015, *Naproxen 220mg 3x/day as an antidepressant and for pain since 2012, *Levothyrozine 75mcg since 2008 (hypothyroid), *Levothyronine 5 mpg 2x/day since 2012 (hypothyroid) *montelukast SOD 10 mg for asthma since 2014, Advair 250/50 2x daily, [DX 11/16 Felodopine 5mg since 2006,DX combivent 8/1/16] *MEDICAL MARIJUANA for neuropathic pain:CBD oil 25 mg 3-4 x day, THC tincture a few drops: 1/4 tsp 0-3x/day, vaporize CBD for breakthrough pain, CBD concentrate for severe pain.  PRN MEDS *Valium 5 mg PRN up to 4/day for muscle spasms, usually 1-2 x/ day. *Low dose Ketamine nasal spray for severe pain, and also finding 1 dose calms bad WD quickly. HERBAL TINCTURES: burdock, lobelia, turmeric, white willow. CURRENT SUPPLEMENTS:  *Methylated B vitamins, *Vitamin D 5000 iu, Alpha Lipoid Acid, Neti pot. [DX 6/13/16 promethazine suppository + 2 OTC Benadryl for severe pain N Acetyl Cytine for asthma1992-2002, over 20 different psych meds. 2012-2016 Eliminated 7 meds 1 at a time DX Plaquenil DX Spironolactone DX Lunesta, DX Ativan,  + others


#26 KarenB

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Posted 02 August 2016 - 04:22 PM

Hey Feral,

 

One of the other mods will probably understand this better than me.  We do have this thread:  http://survivinganti...rawal-syndrome/

 

I did begin to have issues while on effexor, and before tapering.  Dizziness, depression, exhaustion, panic-attacks.  My husband began to develop an extremely hot and itchy skin while on effexor.  These were the things that prompted us to begin tapering. 

 

We have on-going discussion about whether to keep decreasing doses in order to relieve side-effects, or slow tapering in order to relieve w/d symptoms.  I'm going very slow, hubby is going at 10% of his original dose (not recommended).  Overall I can definitely say it's a freaking nightmare trying to work it all out. 


2010 May Fluoxetine 20mg. Raging mostly stops, become more functional.
2011 February Escitalopram 10mg (sudden switch). 2012 January Escitalopram 20mg.  2013 Early June Feeling great, decide to taper. Doc advises alternate days 20mg/10mg for 4 weeks.  Late June Steady. Drop to 10mg daily. Early July Not coping, raging, flu symptoms, shaky, anxious, low, spaced-out, self-destructive.  Mid July Return to alternate days 20mg/10mg - minimal improvement. Early August Return to full dose 20mg. Lost.
2014 February Switch to Venlafaxine. (First reduced Esc. to 10mg/day for a week) Feb-April Lost, 'light' self-harm, exhausted.
April Increase Ven. to 150mg/day. Dizzy. July 75mg twice a day to improve dizziness. Deep depression remains.  2015 Feb Vigilant dose spacing partially eases dizziness. Mar Switch to Effexor 75mg 2x/day. May Cut 10% to 135mg - bad w/d 2 mths, held 1 mth.  Aug 1.3% cut - bad 1mth, held 1mth. Oct 4 wkly 0.4% cuts held 6 weeks. Jan 2016 2 wkly 0.4% cuts. 8 month hold. Sept Wkly cuts: 0.5%, 3 1% cuts.  Oct 4 wkly 1% cuts, hold 3-4 weeks.
Supplements: Fish oil, vitamins E & C, magnesium, iron, MSM, oat-straw tea, nettle tea.  My story of healing: ContinuedHealing

***I am not a doctor or counselor; please do your own research and be prepared to take responsibility for decisions you make.*** 

           'The possibility of renewal exists so long as life exists.'  Dr Gabor Mate.


#27 FeralUrban

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Posted 11 August 2016 - 06:51 AM

I tried to find out info on this forum about which to taper first, oxcarbazepine or venlafaxine, but didn't find it.

 

I asked twice in my Intro topic, but no one responded.  PLEASE -- if anyone can point me at information on this forum that will help me with this question or directly answer it in this thread, I would be very grateful. 

 

I read Altostrata’s post on Brakes and Accelerators http://survivinganti...irst/?hl=brakes Her direct suggestion is to post  specific questions to one's INTRO, so here I am again.

 

I can’t figure out if oxcarbazepine is a brake or an accelerator. Drugs.com interaction checker doesn't really inform this topic. It says "Using venlafaxine together with OXcarbazepine may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating."

 

I was given oxcarbazepine after failing on other neurologic medications to control neuropathy throughout the right side of my upper body -- my face, neck, arm and trunk. It's painful and had gotten to the point where I could not go outside for fear of even the lightest breeze touching my skin and causing searing pain. I couldn't tolerate the standard dose of oxcarbazpine -- it made me trip over my own feet and unable to bring thoughts into focus. So I'm on a "low" dose of 150 mg 2x a day. I definitely want off this drug, as I'm sure it continues to effect me negatively, especially on the cognitive side.

 

That said, my neuropathy was caused by venlafaxine. I'm nearly certain of this, though I have no proof, my history confirms it, as well as my experience with reducing the dose and getting a significant reduction in symptoms. So the evil bastard — venlfaxine — has to go. 

 

My understanding of oxcarbazepine is that in theory it is a "brake" that slows down my system, reducing over-excitability of the nerves, thereby softening withdrawal. Is this true? Is it a brake?

 

Oxcarbazepine also theoretically reduces neuropathic pain, a major issue for me. But I can't say from my experience that it has or hasn't helped. 

 

I was put on other accelerators of venlafaxine by the same neurologist who prescribed oxcarbazepine, so I have no confidence that it is “safe.” in regards to venlfaxine. That neurologist also prescribed -- imitrex, promethazine, benedryl -- which launched me into three months of hell - pain beyond any level I knew was even possible. I was basically bed ridden and completely lost my powers of "Sucking it up!" which was previously one of my superpowers. I wept. I dissociated (left my body.) I took ice baths just to get the pain down to a level where I could so ordinary things, like eat a meal. I lost 20 lbs in 2 months. I went to the ER twice. It was horrific. 

 

If oxcarbazepine is an accelerator I would get off it first, as I think it would possibly be easier for me to withdraw from it. 

 

I'm not sure if I've clarified this, but I walk the razor's edge between venlafaxine WD symptoms and venlafaxine induced neuropathy symptoms, and the neuropathy and WD symptoms seem to interact with each other. So I think, perhaps, my withdrawal from meds is fairly complex. I'm up on the tightrope so to speak. My neuropathy says "I can't get off venlafaxine quickly enough." My WD symptoms say "I can't get off venlafaxine slowly enough." <big sigh>

 

I am waiting for an appointment with a doctor who is both a neurologist and psychiatrist and seems to be a human being as well -- she teaches courses on how to express compassion at MIT and Harvard to aspiring medical professionals, and she comes to it from a place of experience or her own tragedies.  My hopes are up that she will also know the safest way to get off the drugs, and can answer this question, but I’m trying to keep my hopes in check as I've been so sorely disappointed by doctors in the past. 

 

Help appreciated, truly.

 

Feral


2002 to 2016 Venlafaxine ER 225mg.  2013 TMS treatments triggered nerve pain in face, arm, back.  2016 TMS round ending Feb 1 Central Nerve Pain and and sub-acute serotonin toxicity compounded by Imitrex.  April-June tapered over 3 months from 225 to 0. Reinstated 6/20/16 21.5 nonER 2x day. 7/7/16-37.5mg; 7/17/16-36.6; 7/22/16-33.75; 8/22/16 32.6mg, 9/11/16-28.9mg, 9/25/16-25mg, 12/3/16-19.4mg, 12/18/16-18.5 holding.  OTHER DAILY PHARMACEUTICALS:   *Oxcarbazepine 150 mg 2x/day since mid 2015, *Naproxen 220mg 3x/day as an antidepressant and for pain since 2012, *Levothyrozine 75mcg since 2008 (hypothyroid), *Levothyronine 5 mpg 2x/day since 2012 (hypothyroid) *montelukast SOD 10 mg for asthma since 2014, Advair 250/50 2x daily, [DX 11/16 Felodopine 5mg since 2006,DX combivent 8/1/16] *MEDICAL MARIJUANA for neuropathic pain:CBD oil 25 mg 3-4 x day, THC tincture a few drops: 1/4 tsp 0-3x/day, vaporize CBD for breakthrough pain, CBD concentrate for severe pain.  PRN MEDS *Valium 5 mg PRN up to 4/day for muscle spasms, usually 1-2 x/ day. *Low dose Ketamine nasal spray for severe pain, and also finding 1 dose calms bad WD quickly. HERBAL TINCTURES: burdock, lobelia, turmeric, white willow. CURRENT SUPPLEMENTS:  *Methylated B vitamins, *Vitamin D 5000 iu, Alpha Lipoid Acid, Neti pot. [DX 6/13/16 promethazine suppository + 2 OTC Benadryl for severe pain N Acetyl Cytine for asthma1992-2002, over 20 different psych meds. 2012-2016 Eliminated 7 meds 1 at a time DX Plaquenil DX Spironolactone DX Lunesta, DX Ativan,  + others


#28 peggy

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Posted 11 August 2016 - 01:35 PM

i would suspect that it is a brake as it's primary use is as an anticonvulsant which would suggest it dampens down over excitability ...


Started in 2000 - On 150mg most of the time, (but up to 225mg at highest dose for 6 months in the beginning)
Reduced off easily first time - but got depressed (not too much anxiety) 6 months later
Back on effexor for another 9 months.
Reduced off again with no immediate w/d - suddenly got depressed and anxious ++ again 3 or 4 months later.
Back on effexor - this time for 3 years
Reduced off over a month - 6 weeks later terrible anxiety - back on.
Rinse and repeat 4 more times - each time the period before the anxiety comes back got shorter and shorter
Jan - July 2012 75mg down to 37.5mg;, 8/3/12 - 35mg. 8/25/12 - 32mg. 9/11- 28mg, 10/2 - 25mg, 10/29 - 22mg, 11/19 - 19.8mg; 12/11 - 17m,
1/1- 15.5mg; 1/22 -14mg, 2/7 14.9mg, 2/18 - 17.8mg - crashed big time: back to 75mg where i sat for 2 years....

4th  March 2015 - 67.5mg;   31st March - 60mg;  24th April - 53mg; 13th May - 48mg; 26th May - 45mg;  9th June - 41mg; 1 July- 37.5mg; 20 July - 34mg; 11 August - 31mg; 1st Sept - 28mg;  1st Dec - 25.8mg;  28th Dec - 23.2mg; 23rd Jan-21.9mg; Feb 7th- 21mg; March 1st - 20.1mg, March 30th - 18mg


#29 SquirrellyGirl

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Posted 11 August 2016 - 02:41 PM

I would agree with peggy - brake.  Since ven may be the source of neuropathy, I would focus on it first.  You may then toggle your way down, alternating one and then the other, to keep one's affect from becoming overwhelming. 

 

When I was on Effexor for years, my sleep was never great.  When in protracted withdrawal, I couldn't sleep or eat and my doctor put me on Remeron, which is a very sedating AD so acts more as a brake.  Then i reinstated Effexor.  I am "toggling," because I don't want to lose my sleep.

 

Do you remember how OXcarbazepine affected you when you first started taking it? I believe the body pushes back against the brake or accelerator, making compensatory changes in the opposite direction, so sedation, for instance, becomes less marked the longer on the med.  That is yet another reason to go slow, so you aren't left with JUST the changes in the opposite direction un-opposed.

 

SG


Prozac 1995-1999, don't remember the dosage; Wellbutrin 1999-2002? Don't remember dosage though it was in the 300 mgs range
Effexor XR 2002-2014 up to 225 mg at one point, down to 37.5 mg towards end but back up to 75 mg in 2014; now realize I had W/D as I dropped down, memory very poor about history.  Did fast taper, don't remember details, around August 2014.
Took Sam-E 200 mg AM and 500 mg L-tryptophan PM Sept.2014 to January 2015

Doing poorly, put on Viibryd 10 mg for 1 wk, 20 mg for several days, BAD ANXIETY, fast taper to 0 in a week; back on Sam-E 200 mg AM and L-tryptophan 500 mg PM until April 10, 2015; doing very badly, put on Remeron 7.5 mg start April 15-April 30, 2015; Increased Remeron from 7.5 mg/day to 37.5 mg by May 22, 2015; still doing very badly,

June 1. 2015 Reinstated Effexor XR 37.5 mg, Remeron dropped to 30 mg PM. Immediate relief of symptoms, like nothing had ever happened!  On p-doc's orders went up to 75 mg Effexor June 11-12, then back to 37.5 mg when I realized all the hell I had been through before was WD from Effexor!  Joined SA and began tapering both too soon one month later.

8/22/15: Effexor to 30.75 mg, Remeron to 22 mg. 9/9/15 Effexor 30 mg/Remeron 21 mg. 9/24/15: Remeron 19 mg. 10/25/16: Remeron 17 mg. 11/14/15:  Effexor 28.5 mg 12/2/15: Remeron 16 mg. 12/5/15: Effexor 28.1 mg. 12/17/15: Remeron 15 mg. 1/26/16: Remeron 14 mg. 3/22/16, Remeron 13.5 mg and Effexor 25.9 mg (had nudged it down by fraction of a mg since Dec).  4/28/16: Remeron 13 mg, Effexor 25.5 mg.  5/21/16: Remeron 12 mg, Effexor 24.75 mg.  6/17/16, Effexor 23.25 mg, Remeron 11.6 mg. 7/12/16:  Remeron 11 mg, Effexor 22.12 mg.  9/22/16:  Effexor 19.5 mg, Remeron 9 mg.  As of 4/12/17:  Effexor 12.4 mg  Remeron 5.9 mg.

 

My intro: http://survivinganti...e-2#entry196679

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.


#30 FeralUrban

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Posted 12 August 2016 - 07:01 AM

In a private conversation one of the members here explained to me how Oxcarbazepine is CYP450 substrate and inducer.  I have to read up on it and come to understand this more, but I have this limited idea about the system:

 

The CYP450 system metabolizes many medications, among them Oxcarbazepine  and venlafaxine. 

 

From my limited understanding, Oxcarbazepine speeds ups the clearance all drugs metabolized by the CYP450 system, since it is an inducer. Therefore it speeds up the clearance of venlafaxine. When venlafaxine is more rapidly cleared one gets withdrawal symptoms. 

 

So there is a possibility that oxcarbazepine  makes venlafaxine withdrawal more intense.

 

Or, it acts as a brake and keep the system calm.

 

I'll be looking at this as best I can over the next few days. 


2002 to 2016 Venlafaxine ER 225mg.  2013 TMS treatments triggered nerve pain in face, arm, back.  2016 TMS round ending Feb 1 Central Nerve Pain and and sub-acute serotonin toxicity compounded by Imitrex.  April-June tapered over 3 months from 225 to 0. Reinstated 6/20/16 21.5 nonER 2x day. 7/7/16-37.5mg; 7/17/16-36.6; 7/22/16-33.75; 8/22/16 32.6mg, 9/11/16-28.9mg, 9/25/16-25mg, 12/3/16-19.4mg, 12/18/16-18.5 holding.  OTHER DAILY PHARMACEUTICALS:   *Oxcarbazepine 150 mg 2x/day since mid 2015, *Naproxen 220mg 3x/day as an antidepressant and for pain since 2012, *Levothyrozine 75mcg since 2008 (hypothyroid), *Levothyronine 5 mpg 2x/day since 2012 (hypothyroid) *montelukast SOD 10 mg for asthma since 2014, Advair 250/50 2x daily, [DX 11/16 Felodopine 5mg since 2006,DX combivent 8/1/16] *MEDICAL MARIJUANA for neuropathic pain:CBD oil 25 mg 3-4 x day, THC tincture a few drops: 1/4 tsp 0-3x/day, vaporize CBD for breakthrough pain, CBD concentrate for severe pain.  PRN MEDS *Valium 5 mg PRN up to 4/day for muscle spasms, usually 1-2 x/ day. *Low dose Ketamine nasal spray for severe pain, and also finding 1 dose calms bad WD quickly. HERBAL TINCTURES: burdock, lobelia, turmeric, white willow. CURRENT SUPPLEMENTS:  *Methylated B vitamins, *Vitamin D 5000 iu, Alpha Lipoid Acid, Neti pot. [DX 6/13/16 promethazine suppository + 2 OTC Benadryl for severe pain N Acetyl Cytine for asthma1992-2002, over 20 different psych meds. 2012-2016 Eliminated 7 meds 1 at a time DX Plaquenil DX Spironolactone DX Lunesta, DX Ativan,  + others


#31 FeralUrban

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Posted 24 August 2016 - 09:01 AM

UPDATE.

First, I updated my signature line and got into a satisfying editing mode of crossing out discontinued meds.  See? Satisfying.  ^_^ And added more details about my taper to date.

 

I saw Dr. Alice Flaherty at MGH yesterday. A neurologist who is also a psychiatrist and is a very compassionate, curious and willing to listen doctor! Spent 90 minutes with me. I only wish she knew more about WD from AD. I must rely on those who take my insurance. I don't have money to pay those who charge $$$ for advice on how to get off this ****.

 

She made some suggestions that I would appreciate feedback on. 

 

ONE: methylated folic acid. I take a small amount now, but looking into it realized that it can cause many of the same side effects, and decided I shouldn't play around with it. Also it seems to neutralize lamotrigine, which was something she suggested to soften the withdrawal. SO I WILL NOT DO more folic acid. (article about that posted below)

 

TWO: Lamotrigine. Her suggestion is that this is less sedating than oxcarbazepine and may supplement it's positive effects for widespread neuropathy that predated my taper and continues as long as I am on it. SHE ALSO SAID IT COULD dampen dystonic symptoms of venlafaxine, or WD symptoms.

(I had 5 days pain free during my time off venlafaxine) but WD effects were too severe to stay off. I poked around and found that it is recommended as an anti-depressant effect anti-seizure med. Since my neuropathic pain could possibly be controlled by anti-seizure med, it may be well worth it, as this problem is ongoing, and more disabling than the WD symptoms. She suggested a very slow titration up (6.2 mg for 2 weeks, 12.5 mg for 2 weeks, and so on to 25 and then 50 mg.) IF it is effective it also presents the possibility of getting of Oxcarbazpine, which is what I'm taking currently for neurologic pain, with little idea if it works or not. 

THREE: clonidine. I have taken it in the past when my PTSD was severe enough that I felt, physiologically (not a delusion) as if I was about to be killed any moment and thus was stuck at home if I wanted to feel in any way somewhat safe. Clonidine now, could be taken PRN to deal with agitation and rage attacks that come with withdrawal. I think I'd like to have it on hand, as when that happened in June my only recourse to stop a 2 hour series of rage tornados was to take Ketamine and knock myself out. I'd rather not use ketamine that way. It's bad enough having to take it to deal with the high levels of nerve pain, I only take it at night (and not every night so I can sleep rather than lie there throbbing and burning)

 

I KNOW that taking anything additional is risky. Perhaps too risky. BUT I MUST GET OFF venlafaxine as it is killing my nerves, literally. I have neuralgia and neuropathy in the entire right side of my body, as well as my lower left leg, and also  very likely in my Autonomic nerves. So I believe and everything I've charted in my spreadsheet points at that as true. Even if you don't think it's true, I do, and that is what I'm working with until I have proof otherwise. Anything that can spend up the WD would be good in my point of view as another 24 months (current taper rate) on a neurotoxin is too long. 
 

Dr. Flaherty suggested that venlafaxine may in fact cause dystonic effects of muscles spasms especially in the front of  the neck-- which is where the pain problem started! Her comment was my first clue as to why venlafaxine was causing neurologic pain.  I was treated for neck muscle spams in PT two or three times after starting V over ten years ago. And again last year when the neuralgia neuropathy increased. And when I had my TMS induced serotonin toxicity one of the big things that happened was severe body wide muscle spasms. Even now, I can't drive a car -- operating the pedals triggers spasms, that trigger burning nerve pain and then the whole thing gets going. 

 

She also had some interesting non-medication suggestions that I will work with.

 

Thanks people!,

Feral

 

I QUOTE our correspondence below:

 

 

 


Flaherty, Alice,M.D.
5:53 PM (18 hours ago)
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to me
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·         SSRIs and venlafaxine can cause dystonic symptoms, especially jaw and neck, that may have contributed to your pain.

·         Prophylaxis against venlafaxine withdrawal

·         Methylfolate--helps mood, cognitive symptoms.

·         Clonidine PRN for autonomic symptoms, rage attacks.

·         Think about adding lamotrigine to supplement and perhaps eventually replace oxcarbazepine--a non sedating anticonvulsant pain med that raises, rather than flattens mood. Add in 1/4 tab a day for 2 wks, then 1/2 tab a day for 2 wks (to avoid allergic rash), then you can go up faster.

·         Combat pain center "hypervigilance" and avoidance mechanisms.

·         Consider experimenting with a minor, noxious but NOT damaging stimulus (maybe ice water), to deliberately experience pain--using goal-directed motivation to suppress fear-directed aversion.

·         Mirror therapy? Youtube video of someone using for face pain; also Atul Gawande's great itch article in New Yorker

 
 
 
profile_mask_2x.png
ME: aka FERAL
10:56 AM (1 hour ago)
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to Alice,M.D.
cleardot.gif
 
 
 
 
 
 
Dear Alice,
 
The handshake was no problem. The nerve pain I  get does not flare with touch -- unless it is a movement of air. A mild breeze feels like I've gotten too close to a fire. A handshake is a handshake and causes no pain.
 
I do hope you have time to read this. I have questions. And comments. 
  • I am self-diagnosed with: Acquired ultra-conscientiousness regarding medical advice. AUCRM or AwwCrumb. 
  • My humor kicking in as an appeal to gain alliance with you, a clearly knowledgable compassionate curious doctor. Honestly. 
  • And to ask your forbearance in the length of this query.
On the muscle spasm (dystonic reactions.) this is the first key I've had as to why venlafaxine did what it did to me. My data tracking pointed at it, but I could find nothing as to why. So thank-you. I will read more about dystonic reaction.
  • I've had muscle spams  in the front of my neck since at least 2008 -- they just got worse over time and spread into my upper back and upper chest. Had PT twice for it prior to 2010.
  • Muscle spasms were a major feature Dec 2015 - May 2016 (prior to tapering) -- severe muscle spasms, sometimes my entire body, and once oddly enough the entire right side of my body only. This body-wide muscle spasms started with the TMS treatments. 
  • The spasms do not occur in response to heavy  muscular activity (snow shoveling), though can be started by even mild muscular activity -- even now I can't drive very far as the working of the pedals triggers spasms in my legs, which are followed by burning nerve pain.
The estimated length of the taper:
  • My last reduction was 5%  of previous dose on Monday. I have had mild withdrawal reactions so far. I will watch. If they get worse I will have to do even a slower taper. That said
  • With a 5% of previous does taper once every 7 days it will take me 24 months to get off 37.5 mg. Every 21 days (more in line with current experience) I'll be off by 2021. 
  • Therefore, anything that can help me taper more quickly without severe disruption is my priority. 
  • Even a switch to a different antidepressant (but not prozac). 
 
Regarding your suggestions:
 
Clonidine
I will get some to have on hand in the event of extreme irritability and/ or rage. 
 
Folate
Looking around on the web this morning I Found this:  Folic acid seems to nullify the effect of lamotrigine. on The Lancet and from Dr. James Phelps site
 
I also found that for people with methylation gene defect that folate can cause many of the same side effects I am plagued by now. Odd.
 
So I'm going to pass on taking methyl folate. I am currently taking Methyl Protect which includes 2000 mcg. of methylated folate. 2 mg, not much, but I wonder if I should consider not taking it for a while and see what happens. 
 
Lamotreigene.
How does this help with venlafaxine withdrawal? 
 
I see you think that it will prevent an emerging depression that could be unmasked by getting off the venlafaxine. I do not feel that I've had any re-emergence of depression from the reduction from 225 to 32.6 mg of venlafaxine. The crying was not depressive, it was what I would call neurotransmitter chaos. I took away venlafaxine and it was if someone got out of the water bed and the whole system was thrown into chaos.
 
I feel hopeful that I wouldn't have a re-emergence of depression. I am a different person than I was in 1992 and have "processed" a lot of the trauma, established a stable and satisfying life, and done a lot of inner yoga work. 
 
Would  lamotreigene soften the withdrawal symptoms of movement disorder, rage, itching, eye pain, brain zaps, etc? Or the neurologic pain symptoms? I would consider it for either of those reasons. 
 
Working with Fear/Desire regarding Pain
I will think on it and devise an experiment. I actually have a meditation I played with briefly suggested by a Sufi teacher, Andrew Harvey. When I am in pain (got plenty of that!) to lie down and approach the pain as a blessing, a source of transformative prayer for the benefit of others who are in pain. I did this several times and it was helpful in taking the unpleasantness out of the pain. Hard to describe. Required great concentration and surrender, but it worked. 
 
Other SNRIs?
During our conversation you mentioned other SNRIs that had a "greater norepinephrine effect." I'd like to look into those and see if a transition to those and a taper from those would be an easier option.
 
 
Also, I thought you would be interested to read the following by an MGH year 4 resident in psychiatry:
Psychiatric Annals August 2016 - Volume 46 · Issue 8: 466-472 August 12, 2016

 

Catastrophic Complications Related to Psychopharmacologic Drug Withdrawal

James Jenkins, MD; Sean Glass, MD


I appreciate your time yesterday, and any consideration you would give to my questions now. 

2002 to 2016 Venlafaxine ER 225mg.  2013 TMS treatments triggered nerve pain in face, arm, back.  2016 TMS round ending Feb 1 Central Nerve Pain and and sub-acute serotonin toxicity compounded by Imitrex.  April-June tapered over 3 months from 225 to 0. Reinstated 6/20/16 21.5 nonER 2x day. 7/7/16-37.5mg; 7/17/16-36.6; 7/22/16-33.75; 8/22/16 32.6mg, 9/11/16-28.9mg, 9/25/16-25mg, 12/3/16-19.4mg, 12/18/16-18.5 holding.  OTHER DAILY PHARMACEUTICALS:   *Oxcarbazepine 150 mg 2x/day since mid 2015, *Naproxen 220mg 3x/day as an antidepressant and for pain since 2012, *Levothyrozine 75mcg since 2008 (hypothyroid), *Levothyronine 5 mpg 2x/day since 2012 (hypothyroid) *montelukast SOD 10 mg for asthma since 2014, Advair 250/50 2x daily, [DX 11/16 Felodopine 5mg since 2006,DX combivent 8/1/16] *MEDICAL MARIJUANA for neuropathic pain:CBD oil 25 mg 3-4 x day, THC tincture a few drops: 1/4 tsp 0-3x/day, vaporize CBD for breakthrough pain, CBD concentrate for severe pain.  PRN MEDS *Valium 5 mg PRN up to 4/day for muscle spasms, usually 1-2 x/ day. *Low dose Ketamine nasal spray for severe pain, and also finding 1 dose calms bad WD quickly. HERBAL TINCTURES: burdock, lobelia, turmeric, white willow. CURRENT SUPPLEMENTS:  *Methylated B vitamins, *Vitamin D 5000 iu, Alpha Lipoid Acid, Neti pot. [DX 6/13/16 promethazine suppository + 2 OTC Benadryl for severe pain N Acetyl Cytine for asthma1992-2002, over 20 different psych meds. 2012-2016 Eliminated 7 meds 1 at a time DX Plaquenil DX Spironolactone DX Lunesta, DX Ativan,  + others


#32 FeralUrban

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Posted 27 August 2016 - 11:33 AM

I took 6.25 lamotrigine today. 

 

I'm having a fairly good day so far. I was able to garden with husband helping and blanch and prepare to freeze turnip greens. 

 

Nerve pain in my feet has been especially bad for the past week, so I thought I'd give this dart a throw.

 

It's tough when my feet hurt too much to touch the floor, or the slight breeze from the AC sets off fire in my legs, arms and face even  though I'm wearing long pants, sleeves and woolen socks. So I get into this frustrating routine -- putting on an extra layer, covering my head with a shawl. And being all hot in my AC room, but at least breathing cool air. 

 

I don't understand it, but the neurological pain symptoms ebb and flow about every 10 days.

 

 Withdrawal symptoms are far simpler to understand -- reduce dose, symptoms go up, slowly come down, stay down, maybe one bump in the graph here and there. Time to reduce again. 


2002 to 2016 Venlafaxine ER 225mg.  2013 TMS treatments triggered nerve pain in face, arm, back.  2016 TMS round ending Feb 1 Central Nerve Pain and and sub-acute serotonin toxicity compounded by Imitrex.  April-June tapered over 3 months from 225 to 0. Reinstated 6/20/16 21.5 nonER 2x day. 7/7/16-37.5mg; 7/17/16-36.6; 7/22/16-33.75; 8/22/16 32.6mg, 9/11/16-28.9mg, 9/25/16-25mg, 12/3/16-19.4mg, 12/18/16-18.5 holding.  OTHER DAILY PHARMACEUTICALS:   *Oxcarbazepine 150 mg 2x/day since mid 2015, *Naproxen 220mg 3x/day as an antidepressant and for pain since 2012, *Levothyrozine 75mcg since 2008 (hypothyroid), *Levothyronine 5 mpg 2x/day since 2012 (hypothyroid) *montelukast SOD 10 mg for asthma since 2014, Advair 250/50 2x daily, [DX 11/16 Felodopine 5mg since 2006,DX combivent 8/1/16] *MEDICAL MARIJUANA for neuropathic pain:CBD oil 25 mg 3-4 x day, THC tincture a few drops: 1/4 tsp 0-3x/day, vaporize CBD for breakthrough pain, CBD concentrate for severe pain.  PRN MEDS *Valium 5 mg PRN up to 4/day for muscle spasms, usually 1-2 x/ day. *Low dose Ketamine nasal spray for severe pain, and also finding 1 dose calms bad WD quickly. HERBAL TINCTURES: burdock, lobelia, turmeric, white willow. CURRENT SUPPLEMENTS:  *Methylated B vitamins, *Vitamin D 5000 iu, Alpha Lipoid Acid, Neti pot. [DX 6/13/16 promethazine suppository + 2 OTC Benadryl for severe pain N Acetyl Cytine for asthma1992-2002, over 20 different psych meds. 2012-2016 Eliminated 7 meds 1 at a time DX Plaquenil DX Spironolactone DX Lunesta, DX Ativan,  + others


#33 FeralUrban

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Posted 05 September 2016 - 09:35 AM

Update: I took lamotrigine for 7 days and it did not go well. Neuropathic pain skyrocketed. So that experiment is over.
 
My break from cannabis with THC also came to an end. It was clear that my alodynia -- pain from innocuous stimuli (gentle cool breeze = searing pain) was getting worse and I was having to wear long sleeves, pants, scarves and even winter paints and socks to go outdoors in 80ºF temps. The neuropathic pain itself was following along in its normal cyclical pattern.

My first day back on "Mean Green" I had the best day ever. 
The next morning I forgot to take my morning heap of pills. Was I forgetful due to having had such a great day and not being reminded by my body that I needed pills? Was I forgetful because I was having the notorious short term memory loss effects of THC. Who knows! I used to forget all the time before I got in to this mess and before MMJ, so who knows?
 
Twelve  hours later I was horrified to discover I hadn't taken it and both my WD and neuropathic pain symptoms were going up up up! I assume it will take me several days at least to recover. I am also having to move the venlafaxine dose up by 4 hours each day to get it back to it's proper 8 am time slot. taken at night it disrupts sleep. So this also means I'm likely having higher levels of venlafaxine due to 20 hour dosing, and thus my neuropathic pain will continue to be bad until I can get to that 8 am and level it out for a few days. 
 
 


2002 to 2016 Venlafaxine ER 225mg.  2013 TMS treatments triggered nerve pain in face, arm, back.  2016 TMS round ending Feb 1 Central Nerve Pain and and sub-acute serotonin toxicity compounded by Imitrex.  April-June tapered over 3 months from 225 to 0. Reinstated 6/20/16 21.5 nonER 2x day. 7/7/16-37.5mg; 7/17/16-36.6; 7/22/16-33.75; 8/22/16 32.6mg, 9/11/16-28.9mg, 9/25/16-25mg, 12/3/16-19.4mg, 12/18/16-18.5 holding.  OTHER DAILY PHARMACEUTICALS:   *Oxcarbazepine 150 mg 2x/day since mid 2015, *Naproxen 220mg 3x/day as an antidepressant and for pain since 2012, *Levothyrozine 75mcg since 2008 (hypothyroid), *Levothyronine 5 mpg 2x/day since 2012 (hypothyroid) *montelukast SOD 10 mg for asthma since 2014, Advair 250/50 2x daily, [DX 11/16 Felodopine 5mg since 2006,DX combivent 8/1/16] *MEDICAL MARIJUANA for neuropathic pain:CBD oil 25 mg 3-4 x day, THC tincture a few drops: 1/4 tsp 0-3x/day, vaporize CBD for breakthrough pain, CBD concentrate for severe pain.  PRN MEDS *Valium 5 mg PRN up to 4/day for muscle spasms, usually 1-2 x/ day. *Low dose Ketamine nasal spray for severe pain, and also finding 1 dose calms bad WD quickly. HERBAL TINCTURES: burdock, lobelia, turmeric, white willow. CURRENT SUPPLEMENTS:  *Methylated B vitamins, *Vitamin D 5000 iu, Alpha Lipoid Acid, Neti pot. [DX 6/13/16 promethazine suppository + 2 OTC Benadryl for severe pain N Acetyl Cytine for asthma1992-2002, over 20 different psych meds. 2012-2016 Eliminated 7 meds 1 at a time DX Plaquenil DX Spironolactone DX Lunesta, DX Ativan,  + others


#34 FeralUrban

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Posted 06 September 2016 - 03:37 PM

Oh boy! I forgot to take my venlafaxine dose (32.5 mg) and was 12 hours late on Sunday. Very rapid onset withdrawal issues -- dizziness and movement problems, and high levels of neuropathic pain. Took the damn pill as soon as I realized, but now, taking it at night, it's waking me up at 4 a.m.

 
So, I'm trying to move the dose up by a few hours a day. I moved it from Monday 10 p.m. to Monday to 6 pm. to Tuesday to 4 p.m. -- but now I'm getting toxicity symptoms -- more neuropathic pain.
 
Any advice on adjusting the time of day of the dose safely back to morning?

2002 to 2016 Venlafaxine ER 225mg.  2013 TMS treatments triggered nerve pain in face, arm, back.  2016 TMS round ending Feb 1 Central Nerve Pain and and sub-acute serotonin toxicity compounded by Imitrex.  April-June tapered over 3 months from 225 to 0. Reinstated 6/20/16 21.5 nonER 2x day. 7/7/16-37.5mg; 7/17/16-36.6; 7/22/16-33.75; 8/22/16 32.6mg, 9/11/16-28.9mg, 9/25/16-25mg, 12/3/16-19.4mg, 12/18/16-18.5 holding.  OTHER DAILY PHARMACEUTICALS:   *Oxcarbazepine 150 mg 2x/day since mid 2015, *Naproxen 220mg 3x/day as an antidepressant and for pain since 2012, *Levothyrozine 75mcg since 2008 (hypothyroid), *Levothyronine 5 mpg 2x/day since 2012 (hypothyroid) *montelukast SOD 10 mg for asthma since 2014, Advair 250/50 2x daily, [DX 11/16 Felodopine 5mg since 2006,DX combivent 8/1/16] *MEDICAL MARIJUANA for neuropathic pain:CBD oil 25 mg 3-4 x day, THC tincture a few drops: 1/4 tsp 0-3x/day, vaporize CBD for breakthrough pain, CBD concentrate for severe pain.  PRN MEDS *Valium 5 mg PRN up to 4/day for muscle spasms, usually 1-2 x/ day. *Low dose Ketamine nasal spray for severe pain, and also finding 1 dose calms bad WD quickly. HERBAL TINCTURES: burdock, lobelia, turmeric, white willow. CURRENT SUPPLEMENTS:  *Methylated B vitamins, *Vitamin D 5000 iu, Alpha Lipoid Acid, Neti pot. [DX 6/13/16 promethazine suppository + 2 OTC Benadryl for severe pain N Acetyl Cytine for asthma1992-2002, over 20 different psych meds. 2012-2016 Eliminated 7 meds 1 at a time DX Plaquenil DX Spironolactone DX Lunesta, DX Ativan,  + others


#35 Altostrata

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Posted 07 September 2016 - 11:08 AM

In your situation, I would just skip it back to morning from 4 p.m. Your system should settle in a few days.


This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

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#36 SkyBlue

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Posted 07 September 2016 - 11:10 AM

It's pretty darn unnerving what one missed dose can do! ! ! ! ! 


Long story short: After 18 years on Paxil, "tapered" in July 2015 from 20 to 10 to 5 mg in a month, at doctor's advice. = Essentially a cold-turkey.

*Current*: March: 0.82 mg Paxil. Jan 1:  .88 mg, baby!! …. August 31: Less than 1mg Paxil! ... July 30: 1 mg Paxil! ! ! And 100 mg Zoloft unfortunately!!  

-------------------------------------------------------------------------------------------

On Paxil since 1996--anxiety & depression likely caused by (then-undiagnosed) under-eating / eating disorder. 

Rapid "taper" July 2015 and started Zoloft as a "cross-taper". Feb 2016: Found SA!! As of June 2016: Doing 2% cuts (Brassmonkey Slide!). 

Now: fish oil, magnesium; protein; exercise; healthy fats; acupuncture, meditation, & a new doctor.  I am in recovery from an eating disorder!!!  ***Have you had a sleep study?***    *Feel free to message me if I don't respond to a forum thread.* 






Also tagged with one or more of these keywords: venlafaxine, serotonin syndrome, TMS, Parkinson like movement, Serotonin toxicity, Cannabis, neuropathy, migraine, Serotonin Discontinuation