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Callie

Callie: Venlafaxine XR or Effexor XR - hoping to be well someday

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ChessieCat

I've just done some searching.  I couldn't find anything about gums, but found this and wondered if it may be related:  saliva-problems-dry-mouth-xerostomia-or-increased-salivation-drooling

 

And this in particular:

 

On 03/09/2015 at 4:42 PM, Petunia said:

...a constantly dry mouth can lead to dental problems...

 

 

 

 

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Callie

Hope to get an answer on this one...

 

For the last three months I've been having full body uncontrollable shaking/jerking episodes. I've only had about 10 of them now, only happen when laying down. They last about 5 or 10 minutes. I don't lose consciousness, so I don't think they are seizures. They always happened while awake except for last night. An episode began while I was asleep and woke me up. Do these happen to anyone else? Could this be akathisia or something else?

 

Callie

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Callie

Thanks, Gridley,

 

I take 360 mg fish oil and ~65 mg magnesium oxide per day. Maybe that's not enough magnesium and the wrong kind. I'll be switching over to magnesium glycinate soon. How much of that do most people take per day or what would be the initial dosage?

 

I'm glad you sent me the link. I always have a hard time finding appropriate links when I search SA.

 

Thanks again for answering. Means a lot.

 

Callie

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Gridley

You might want to try increasing the magnesium little by little, monitoring its effect on you.  Magnesium glycinate is the most calming form and most easily absorbed.

 

I take around 1200mg fish oil in three doses.  You could try increasing that slowly as well.  

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Callie

Okay, thank you, Gridley.

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peng

I can recommend magnesium glycinate or malate.  I am prone to gastric upset and have found they give no trouble.  (Citrate did seem to, and oxide/hydroxide can be a bit too laxative IMO).

 

Currently I take 3 X 100mg capsules Magnesium Glycinate (about 75% RDA) and a probiotic for the benefit of digestion.

 

I also take the other stalwart, recommended supplement of omega 3 oil in capsules.

 

You have taken a huge jump without a parachute from your powerful drugs, Callie.  I am not a dr, but it will be clear to many of us fellow sufferers with the lived experience that you are having bad withdrawal.

 

Love, best wishes and strength.  Thinking of you.

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Callie

Hello, Peng,

 

Thanks for your input. Once I make the switch to glycinate, I'll slowly increase it. I'll look into what stalwart does, too.

 

When you say you are not a doctor, don't sell yourself short. You are much wiser and well informed than they are! I'll have to share my recent office visit experience to a new doctor I saw last week. I'll write about sometime next week.

 

Prayers,

 

Callie

 

 

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Callie

In searching for a doctor, I thought I finally found one that could help me. Before I even made the appointment with this internist, I wanted to know if he had experience treating patients with AD WD syndrome. The receptionist said she'd find out and call me back. When she did, she assured me that he had the experience and could certainly help me. Well, someone was dishonest there because when I went to the appointment, this internist told me there was no such thing as AD WD syndrome. Antidepressants do not affect the brain in any way to change it. He saw many patients who just stopped taking the meds with no problems whatsoever. He further said that the Internet is all lies. I couldn't believe it!!! He also refused to put in my medical record that I do not want any psychotropic meds ever again.

 

I had given him my tapering schedule from a year ago and a list of symptoms with approximate dates each began. Instead of focusing on my symptoms and doing a thorough exam, he became preoccupied with giving me the third degree about my psychiatric history. What was the diagnosis? (Anxiety and unipolar depression). Why so many drugs? (Don't know. Doctor prescribed them.) Why did you see four psychiatrists over a period of 14 years? (They kept leaving the facility I went to until they finally closed, and I went somewhere else.) Then he asked me the same questions over and over. He then went to the waiting room, got my husband, brought him back to the exam room where I was, and started interrogating him. My husband told him the same things I did.

 

Finally, he listened to my heart and lungs and felt my right collar bone, and that was it for the exam. I did manage to tell him I was freezing all the time and losing my hair, so he ordered a full thyroid panel, CBC, and vitamin levels tests.  He said he thinks it's a thyroid problem. If not, his next step will be to test me for Lyme disease.

 

Never in my life was I ever treated this way be a doctor. I'm quite upset. My husband said to give him a chance, but I'm terrified of this man and do not want to go back to see him. He was supposed to call me the end of last week with test results, but I never heard from him and still haven't. I don't want to call his office for I fear he might force me to come back there to get the lab results, do more testing, or who knows what else. Has anyone ever had an experience like this? Do I have a right to the lab test results without going back to see him? Help, anyone?

 

I so regret not having walked out of his office when I discovered I was lied to, but I have no courage.

 

Callie

 

 

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bheb
7 minutes ago, Callie said:

Antidepressants do not affect the brain in any way to change it.

 

What?! The whole reason they are claimed to "work" is precisely because they change the brain. This person sounds awful -- I'm so sorry. I've got a great psych but was dismissed by an internist and told I had BPD when I mentioned my drug-induced physical agitation/akathisia. It's a terrible feeling to be invalidated. Doctors have massive ego issues it seems. It's infuriating. 

 

You absolutely have a right to your test results without having to speak to him again. I would call the office and ask for them. Under HIPAA, you're entitled to copies of your medical records.

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Callie

Thanks, bheb,

 

It helps to know I'm not alone. I'll try to build up the courage and call. Thanks for mentioning HIPAA. I'll look it up on the Internet and be ready to quote it in case they give me a hard time.

 

The medical community is even more scary to me now, so I don't know what I'll do if something bad shows in my labs.

 

Callie

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Callie

This is a follow up to my doctor visit posting.

 

I called the doctor's office the other day to request my lab results and to say I am not going to be a patient there after all. To my surprise, the doctor called me back a little while ago to tell me that my lab results were fine (whew! no thyroid disease) and that I am not going to find a single doctor who treats AD WD. He reiterated that people don't have problems going off the meds. They just stop, and they're just fine. I agree with not being able to find a doctor to help me, so I give up. I wholeheartedly disagree with him, however, about people not having problems stopping the meds.

 

This doctor knows I am not going to go see him again. He said though that he thinks I either have Lyme disease, lupus, or rheumatoid arthritis; but what I have is AD WD disorder.

 

Thank you everyone for your support so far.

 

Prayers,

 

Callie

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powerback
2 minutes ago, Callie said:

This is a follow up to my doctor visit posting.

 

I called the doctor's office the other day to request my lab results and to say I am not going to be a patient there after all. To my surprise, the doctor called me back a little while ago to tell me that my lab results were fine (whew! no thyroid disease) and that I am not going to find a single doctor who treats AD WD. He reiterated that people don't have problems going off the meds. They just stop, and they're just fine. I agree with not being able to find a doctor to help me, so I give up. I wholeheartedly disagree with him, however, about people not having problems stopping the meds.

 

This doctor knows I am not going to go see him again. He said though that he thinks I either have Lyme disease, lupus, or rheumatoid arthritis; but what I have is AD WD disorder.

 

Thank you everyone for your support so far.

 

Prayers,

 

Callie

Oh What an ignoramus this doctor is ,sadly only time will prove this person wrong ,they are giving meds that are very sketchy with proof if any at all to an "illness that cant be tested correctly and then they claim there isn't withdrawl ,perfect situation for this field of "medicine"  .no proof and then put all the onus on the patient .I'm sick to my stomach with this hierarchy of contempt  that has gone on for way to long .

Everything he thinks you mite have are brought on by withdrawl.

People will discontinue meds for what ever reason and have problems and they would not even attribute there issues or connect it to the meds ,there that good of a spell .

 

Good on you Callie taking  the power back and never stop learning for yourself and about yourself .

Be safe .

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Callie

Today marks one year since the end of my rapid taper off of psychotropic drugs. I began experiencing withdrawal symptoms way back while I was tapering, and they have continued till today. Unfortunately, I didn't find SA or know anything about proper tapering until it was too late. My psychiatrist pretended to know but actually knew nothing about how to taper, denied that I was having withdrawal symptoms, and then abandoned me. My regular doctor at the time confirmed the symptoms as being withdrawal; but unknown to me back then--his advice to drink water, sleep, and exercise and it would all quickly go away--was not going to work. I know now that reinstatement and a snail's pace tapering schedule would have been the way to go.

 

I've been keeping a daily record of my symptoms and rating how I feel each day.  I see that I am indeed following the waves and windows pattern finally. Windows for me are just when some symptoms quiet down entirely and the others just minimize. I haven't been symptom free yet, just that some days are a bit more tolerable than most. Over the past year, some symptoms have gone away but were replaced by other ones. Here are my current predominant ones:

 

  • Hypersensitive to touch (everywhere, but intensity is greatest on arms, hands, and fingers)
  • Stinging and nettles sensation on arms (Burning is going away but is being replaced by a sensation that an IV needle is being inserted in my forearms. This sensation is intermittent and brief, thank goodness.)
  • Sensation that my arms, hands, and fingers are blocks of ice
  • Cold intolerance (feel freezing cold most always)
  • Hot flash attacks (These are horrid and often very painful. I have roughly 20 episodes per day.)
  • Sensations in head (pressure with electrical buzzing, can feel in mouth and teeth too, lasts for hours or days, brain zaps perhaps?)
  • Throbbing, pounding head
  • Sensations in torso and legs (creepy, weird, unnerving, burning, tense, tickly, just very hard to describe, akathisia perhaps at times?)
  • Emaciated, skin and bones, maybe loss of adipose tissue (can feel bones, especially tailbone, rubbing inside skin when laying down)
  • Excessive hair shedding
  • Constipation (Probiotics help a little with this.)
  • Severe pain upper right arm
  • Middle back muscles ache
  • Chest pressure and pounding heart
  • Anhedonia

At times, I get severe attacks (wave) of above symptoms hitting simultaneously and intensely causing me to become immobile where I have to sit or lay down and then can't get back up for quite a while. Very painful. Can't even open my eyes.

 

I just keep on hoping that I heal. I'm 64 years old and want my normal pre-medication self back or something close to it. Sometimes I feel it's not going to happen though, but I can't give up.

 

Prayers,

 

Callie

 

 

 

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FarmGirlWorks

Wow, Callie: you've been thru the ringer this past year. My one-year anniversary was yesterday and I was so hoping this would be behind me. Glad to hear that at least the symptoms are tolerable sometimes. Hang in there, we will all get better, it just takes a lot longer than ever expected.

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Callie

FarmGirlWorks:

 

Congratulations to you on being off of the dreadful drugs for a year, too. We made it this far. We just have to keep on going, and we'll be well someday.

 

Healing thoughts come your way,

 

Callie

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Callie

I have been experiencing a really bad wave for the last couple of days. The pain in my right shoulder and arm is excruciating and is exacerbating my wave.

 

I just want to share with everyone what I found on the Net about arm pain, and I truly believe that this is my problem. It's called "shoulder mouse," and it's from poor mousing ergonomics. When I looked at my setup for mousing, I found that I am guilty of mousing incorrectly. If you're experiencing pain in your mousing-side arm, shoulder, or neck, this can definitely be the cause. I believe that in my case, perhaps not yours, being in such an intense hypersensitive state from a rapid taper off of multiple drugs, any incidental pain I have is off the charts.

 

Anyway, don't put up with mousing shoulder (arm, neck) if you think you have it. There are many sites on the Net that have an inordinate amount of information about. Get your egonomics corrected and heal thy arm pain!

 

Prayers to all,

 

Callie

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Callie

Back in January I addressed my unintentional weight loss issue here and did get an answer. However, I'm going downhill fast with losing weight. I just lost another pound overnight. My BMI is 17. I need help desperately from someone who has experienced emaciation or pretty close to it from withdrawal. I already checked out the topic on weight gain/loss and didn't find anything. I'm not anxious or depressed either.

 

I'm in bad shape. I can wrap my hand around my entire sacrum as there is nothing but skin and bone there. When laying down, my spine and tailbone rub and roll around inside on my skin, very creepy. Sitting hurts. All my ribs show. Skin is just hanging off my body. I have an appetite and eat well.

 

Help!

 

Callie

 

 

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Dalalea
28 minutes ago, Callie said:

Back in January I addressed my unintentional weight loss issue here and did get an answer. However, I'm going downhill fast with losing weight. I just lost another pound overnight. My BMI is 17. I need help desperately from someone who has experienced emaciation or pretty close to it from withdrawal. I already checked out the topic on weight gain/loss and didn't find anything. I'm not anxious or depressed either.

 

I'm in bad shape. I can wrap my hand around my entire sacrum as there is nothing but skin and bone there. When laying down, my spine and tailbone rub and roll around inside on my skin, very creepy. Sitting hurts. All my ribs show. Skin is just hanging off my body. I have an appetite and eat well.

 

Help!

 

Callie

 

 

Hi Callie,

I don't have any answers for you but I want you to know you are in my prayers. There has to be a solution to the weight loss!

Dalalea xx

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Callie

Thanks, Dalalea, for being so thoughtful.

Callie

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Gridley

Callie,

 

I'm sorry you're going through this.  I too have lost a lot of weight due to withdrawal.  I don't have any suggestions but wanted you to know I'm thinking of you and you're not alone in this symptom.

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Callie

Help! Help! Help!

 

It doesn't seem as most people in WD experience the emaciation that I am experiencing, so I broke down and went to a gastroenterologist today about my severe weight loss. The doctor told me that the reason I feel cold all the time is because I am so underweight and that it is also causing my hair loss. SIBO and Candida overgrowth were ruled out as my symptoms are not indicative of those illnesses. She wants me to go for a CT abdomen/pelvis w/po & IV contrast. I was okay with that until I got home and started looking into reactions from the contrast dye. It's not recommended for people with histamine issues.

 

One of the drugs I was taking was venlafaxine (effexor). It's widely known that that drug targets histamine receptors, acts like an antihistamine. When one goes off of it, histamine receptors go wild causing one to itch insanely. Boy! Do I know about that first hand. In fact, I still experience mild itching every day. So what it all this boils down to now is that I am terrified of contrast dye. I can barely tolerate the hell I'm in now, and I'd figuratively, if not literally die from a reaction. Yes, among the many reactions, anaphylaxis could occur.

 

What I'd like to know is this:  Has anyone with a histamine issue successfully had a CT scan with contrast? Any other options/insights? I need more information.

 

Thank you,

 

Callie

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Gridley

Callie,

 

I can't for some reason pick up the link but Google     survivingantidepressants.org contrast dye     There's some information there that I hope helps.

 

I did want to let you know that I have experienced emaciation and weight loss since my taper got underway.  I eat pretty well and really as much as I can but it doesn't seem to help.  I don't see so much about in on SA, but it is definitely a WD symptom.

 

Gridley

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Callie

Thanks for responding, Gridley.

 

I tried the link, but no luck with it. I'll try a search. I'm also going to ask the doctor if the CT scan can be done without contrast dye. That might be an option.

 

I just need to confirm with you what I mean by emaciation. I literally have little to no body fat. I look like a person who is dying of starvation. Is this the same for you? Also, a new symptom has arisen in the last week or so. It feels as if the nerves in my body, entwined in my muscles, are tightening up or constricting. Stretching is very painful. In fact, I don't even have to move and suddenly I get excruciating nerve pain in my neck, upper back, arms, and legs, mostly on my right side. It's been 13.5 months since my fast taper ended. Shouldn't I be improving instead of worsening? I'm losing hope fast.

 

Callie

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Gridley
Posted (edited)

Callie,

 

I am very thin with little body fat, but not to the extent of looking like I'm dying of starvation.  I have had a very tight neck and neck pain, which gets better then worse.  

 

Unfortunately, there is no way to tell when you will improve.  The members' stories here indicate that you will improve but we don't know when.  AD withdrawal is a topsy-turvy situation.  If it were normal, then you "should" be improving, but there are no should in AD withdrawal.  These drugs are strong, they change the architecture of the brain, and the time until you return to homeostasis can't be predicted.  Do not lose hope.  As I said, you will improve.  I wish I could tell you how soon, but I can't.

 

The following was written by Apace, one of our moderators, and I have found it helpful when thinking about how long it takes to heal:

 

"I think the best answer anyone can give you is that over time the brain will return to homeostasis and healing will occur.  How long that will take  and what that means when taking a healing brain along with the passage of time and mixing it all up is anyone's guess.  The success stories, while they did take more time (in most cases) than any of us would like, seem to indicate that there is substantial healing and a lot of people come out "on the other side" feeling better about life and themselves than they did either before or during the use of the drugs.

 

"It would be misleading and, frankly, unethical for me to tell you "don't worry -- you'll be fine in x months."  The reality, as you already know, is frequently different.   My personal experience, however, is that most of the people that find their way to SA have been hit harder than that and are in a situation that is going to take time to repair. 

 

"But, at the end of the day, the people who have been doing this for a long time tell us that healing will happen and we have no reason to doubt that.  The Success Stories bear that out as well and they also indicate that even those among us who are really sick and dealing with hellacious symptoms will, in the long run, see healing and recovery."
 
(end of quote)

 

You may have already read this information but I'm attaching it as it is helpful in understanding what you're going through:

 
 

 

When we take medications, the CNS (central nervous system) responds by making changes over the months and years we take the drug(s). When the medication is discontinued, the CNS has to undo all the changes it made. Rebuilding the neurotransmitter production and reactivating the receptor and transporter cells takes time -- during that rebuilding process symptoms occur.  

Youtube video, 4 minutes: Healing from antidepressants
 
Best,
Gridley
 
 
 

 

Edited by Gridley

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powerback
5 hours ago, Callie said:

Thanks for responding, Gridley.

 

I tried the link, but no luck with it. I'll try a search. I'm also going to ask the doctor if the CT scan can be done without contrast dye. That might be an option.

 

I just need to confirm with you what I mean by emaciation. I literally have little to no body fat. I look like a person who is dying of starvation. Is this the same for you? Also, a new symptom has arisen in the last week or so. It feels as if the nerves in my body, entwined in my muscles, are tightening up or constricting. Stretching is very painful. In fact, I don't even have to move and suddenly I get excruciating nerve pain in my neck, upper back, arms, and legs, mostly on my right side. It's been 13.5 months since my fast taper ended. Shouldn't I be improving instead of worsening? I'm losing hope fast.

 

Callie

Hi callie you need to up your healthy fat intake considerably ,slowly let your body adjust because it will make you nauseous putting lots of fats in at first ,google dense nutrition and healthy fats and  see  what comes up .its one thing eating but the other thing is our body's ability to absorb the nutrients .Avacado ,coconut milk/cream ,organic salmon ,  are just a few ,buy full fat because low fat is a con that is just pumped full of sugar .up the fats and hopefully they stay in your system ,if there passing through you cut back because your just wasting money then .

If your this thin you need to obsess healthily about learning nutrition .I'm shocked at what I've learned  ,we haven't a clue how much our body needs .

I'm no expert but I'm learning from them and this is the silver lining in this nightmare of withdrawl for me ,it forced me to wake up to the fuel my body needs not what is just tasty .

Maybe even do this under the supervision of a GP or nutrionist .

Im  on the poison venlafax 😡.

Take care 

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LexAnger

Omg, callie, just read through your topic and I am so sorry you are suffering so much still after 13 months. I share with you many painful symptoms especially those from parathesia and strange various head sensations.

 

I am now 8 months off lexapro after 4.5 year taper, still suffering badly like you without any windows. 

 

I just had a mri for my back and it knocked me off completely for 10 min or so. I had xray without problems.

 

I hope you will see windows soon, this is too much for too long. Only that now you know you are not alone.

 

Lex

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Callie

Hello Gridley, Powerback, and LexAnger:

 

I've been away from my computer for a few days, so that's why I haven't gotten back to you sooner.

 

You need to know how much I appreciate all of your support. I will look into everything you suggest. Thank you! Thank you!

 

I can't say much more than that right now as I am in a ton of pain and discomfort. Got to go. I'll catch all of you again on another day.

 

Prayers,

 

Callie

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Altostrata

Callie, what do you mean by your "histamine issues"?

 

It could be your emaciation is causing a lot of symptoms.

 

Not to alarm you further, but we had a member here, alexjuice, who became emaciated. It turned out he had severe intestinal parasites (as well as mold exposure). Once this was resolved, he recovered.

 

If I were you, I would be eating lots of bread and butter -- anything to get calories into you. You should be eating everything high-calorie you can get your hands on, as long as it doesn't cause any bad reactions.

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Callie

Altostrata:

 

By histamine issues, I had severe itching when I first went off of the drugs. I still have some itching on occasion, but not so bad.

 

I was thinking that I might have something intestinal, so that's why I went to see a GI doctor. She wants me to have a CT scan with contrast. She probably thinks I have cancer. I decided not to do it as the reactions from the contrast dye could be quite severe, not willing to take that chance, plus the test is cost prohibitive at $7000. I have very poor insurance coverage and on a fixed income.

 

I'm going to look into the parasites issue you mentioned and see what testing is needed for that. I'm also considering going to a doctor who specializes in Lyme disease to hopefully rule that out. Many of my symptoms match that disorder, especially the head pressure, which is almost constant.

 

Thanks for the suggestion of increasing caloric intake. Powerback also suggested same. Thank you, too, Powerback.

 

Callie

 

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powerback

Your more than welcome callie,get watching all them cooking shows to wet your appetite .maybe your gut microbiome is decimated and needs replenishing .

Take care.

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