59 posts in this topic

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



Thanks. That is precisely what I'm doing. Day 3 on that strategy and I slept through the night, which is great.




My neuropathic pain however has continued to climb back into the levels I was having in Jan-May.  I went to the big city for doc's appointment yesterday. My dear husband drove me, and wheeled me around the hospital. I can walk, but I find cumulative "stress" makes pan worse I try to limit as much as possible anything physiological demands I can when we make this trip. The alodynia was so severe that I was had to be covered head to toe with scarves on top of the long sleeves and pants-- and despite that just the air movement of being wheeled, and the HVAC was searing. And the dark sunglasses for the photophobia plus a wide brimmed hat. I had one woman stare at me then whisper something to her husband, who then stared at me. So I took off my sunglasses and stared at him until he finally looked away. Geesh. 


I'm discouraged about the escalating levels of pain - I'm nearly as bad as I was in Feb - May, which is to say I'm in severe body wide nerve pain that gets worse as the day goes on. I can deal with it when I'm awake, with CBD oil and tiny doses of THC. With those the intensity goes down a bit and then creeps back up. I'm so grateful to have those on board, as without them I'd have nothing. At night low dose ketamine nasal spray is the only possibility to turn the burning down to a level I can fall asleep with. I'm also grateful for this, but it's definitely a scary drug in that I can see it could become an addiction. So I force myself to take breaks whenever possible, and only use the minimum dose to bring me out of the fire. 


Guess this is a self-pity post. OH well. 

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More about the doc's visit.


Dr. Mukerji was interesting and at least we are on the same page, which is the first doc I've got there with.


The upshot is I will continue to see her to have conversations about this situation, progress, etc. and she will try to help and support me while I attempt to get off venlafaxine. This agreement came after she said, "Well I'm not doing much of anything for you - I'm not prescribing anything." I smiled and said, "You are doing something --  you are providing me with intelligent conversation on a difficult problem that I am trying to work my way through." 


She will also take over the prescriptions from the previous neurologist, so I'm very grateful to never have to see the iatrogenic specialist bastard again.


She suggested I consider a gradual reduction in oxcarbazepine, as it is a weak inducer of venlfaxine, and it might not be doing anything helpful for me, and getting off it may help me get off the VEX. I said, that I'd try it when I get stable and have been stable for a while. But at this rate, stabilization seems far away. I'm aware that some people have trouble coming off that too. So I'm not optimistic that it will go well, but if it's possible to get off, it would be one less drug, which would be a great thing. And perhaps less dizziness and cognitive impairment.

She also referred me to the Henry Benson Mind Body Institute -- which may be able to provide "non-invasive" assistance with acupuncture, meditation, etc. And it could possibly be covered by medicare. 


She liked my graph -- said it was the best one she'd seen. And congratulated me on doing my research. Wow, a doc that respects my intelligence and input. 



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F.E.  This sounds like such a positive move in the right direction. If your doctor is on board and supportive that should make things so much easier for you.  The Mind / Body institute sounds awesome.

I hope it all continues to go well.


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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.


Hi FeralUrban,


I thought I would respond as far as my own experience with the oxcarbazepine.  Yah, basically I think it can be a brain deadener type calmer.  I think at the higher dose it surely did keep me fairly dumb as well........dumbed down and sometimes a bit confused.  I don't think I am too far from a fairly healthy baseline for my age now though.   And I still think that it maybe does some changes to the temporal lobes of the brain.  I have no documentation to back this up...........just my own thoughts on it.  A lot of memories sure came back in vivid technicolor for me when I was first on it(for the second time).


I am down to a total of 37.5mg. of this crap now split into 2 doses.  It's not nearly as sedating or calming or deadening anymore...........  In fact my sleep is a bit more broken.......seems I rarely get that big long stretch of at least 5 hours a night that I like.


I also think it is a pretty crabby making medication........call it agitation or quick to anger or irrational...........for me it's been more in the am hours or late afternoon and it's not sooo bad I suppose as I don't act on it but I do feel it physically.  And it is tempered and neutralized by many of the things I do.  For example the Epsom salt baths are greatly calming.  If out and about I try to always have some Magnesium complex to mix in water and sip on.  I rarely need it when out anymore, which is nice.  Anything that proves meditative for me helps alot too.........those things that clear the mind of thoughts and bring one back into the present.  


The neuro stuff seems minimal now for me.........usually while at the computer my foot or lower leg might go to sleep.  I can usually do the shake it all about and it comes on back awake without the pins and needles feeling.


That's about all I can come up with now on the oxcarbazepine and sharing my experiences with it.  I will be so happy to be off it completely someday soon.  I am just going to hold for now for maybe a bit longer as I have some travel type stuff and other stuff to do that I just don't want to compromise.


Okay.......hope this helps you someday, when you get to the oxycarbazepine titration.  And hope you are well enough.



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I'm sticking with the 4 p.m. time for taking venlafaxine.

I've continued to have really bad neuropathic pain, crazy sensitive alodynia
and some moderate withdrawal symptoms - wobbly gait, easily alarmed, a bit dizzy. Sleeping or not sleeping. Eating or not eating. Sweating.


Pain Pain go away.

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I decided to drop from 32.6 to 28.9 mg venlafaxine today. 

I'm fairly certain that the neuropathy is caused by toxicity of the drug, and since the neuropathic pain has been bad, and the withdrawal stuff minimal, that going down might shift the neuropathic pain into a less intense place. I've been basically at level 8 for over a week now (with level 10 meaning I collapse to the floor in pain -- had one day of that actually) I've gotten to the point where I must cover my entire body with multiple layers to avoid any air movement as it causes burning pain. And the bottoms of my feet basically burn to touch anything at all. Standing and or walking can be a real drag. Been needing to take ketamine every  night just to turn down the pain volume to a place where I can sleep. 

I'm hoping this is not a mistake, but I felt I had to do something to get out of this cycle. I was in a similar cycle for 3 months earlier this year and it's a hell I'd rather not go to if there is a way out. 

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I'm 3 days into my latest reduction. The immediate plus was a significant decrease in neuropathic pain. Withdrawal was mild until it upped it's game at 3 a.m. this morning -- been awake since then with a new self-loathing thought every 3 minutes. It's amazing how many different ways one can self-loathe. Every thing I ever said or did, or didn't say or do in the past 10 years that someone may not have liked has come to my mind. If one I could concentrate and remember I'd have quite a long list! Keep reminding myself every 3 minutes that this is a symptom of WD not reality. Still for today I choose this mental suffering over the neuropathic pain.

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"It's amazing how many different ways one can self-loathe".  That's priceless FeralUrban!  I will add to that my own amazement sometimes at how many ways one can loathe our outer worlds as well.  Keep in mind it can and does get better.  This does have meaning and significance.  You are helping others simply by being open and sharing your experiences along the way.


........and good old Effexor/venlafaxine!!!!  Yowser, don't get me started!  I think I was on 150 bid at one time.  Perhaps it was 300mg.  Lovely drug..........just lovely.  Also it is complicated just to spell it generically. 


Who is your prescriber if you wish to share.........not the name but just the type of ?physician?   I'm interested........as to the Ketamine.........my understanding was that it was more being used experimentally or in studies or something...........could be that is outdated information/understanding.  And nasal spray?   I shall go read more when I get a chance to.


In anycase TGIF.........Lol, I know it's only Wednesday but the rains have come here and no reason we cannot head on into a wonderful weekend.





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Who is your prescriber if you wish to share.........not the name but just the type of ?physician?   I'm interested........as to the Ketamine.........my understanding was that it was more being used experimentally or in studies or something...........could be that is outdated information/understanding.  And nasal spray?   I shall go read more when I get a chance to.



The ketamine is prescribed by a neurologist. There are pain specialists who will also prescribe it. It is also being studied investigational as an anti-depressant.


It is a "dissociative anesthetic" used primarily in military field trauma care. It is extremely potent, even at low doses, and extremely fast acting -- within seconds. The pain relief seems to last about 4 hours. 


It is habituating, and for it to remain effective one must take a 2 day break every week. 


I do not enjoy the fact that there is in my mind a craving that arises for it -- addictive in nature.


I fully appreciate the fact that when my legs are on fire with neuropathic pain, I can use the ketamine to put the fire out long enough to go to sleep.


It is also know as a date rape drug, club drug.


I would say investigate thoroughly and only use if there are no other options.


I use it because I will not take opioids (for many reasons) -- other than post-surgically.

And generally opioids don't work for me - pain still there, I just don't give a **** about it. They only work in extremely high doses for me -- likely do to recreational  heroin use when I was a 13 year old run away. Not optimal. 

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Okay.  Thanks.  Nope, I wouldn't touch the stuff with a 10 foot pole.  However, I may have pulled out of some of my commitments that were so important to me a few days ago.  Just a lot of emotional pain and feelings.  Not more than I can handle.  Once again......my faith seems to be dwindling........in myself, in this great something outside of myself.........  And pffft........up in the wee hours.


Thanks again.



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Last night was the worst for Neuropathic pain in about 6 months. It took 16 doses to get me out of intractable pain over most of my body. I hated having to take that much, but it definitely was the one option if I wanted to stay out of the ER, where I would be given drugs that are not as safe. 

My normal dose, when needed is 2-4 sprays in each nostril. Occasionally 6, rarely 8. Some nights none at all.

It seems like the neuropathy attacks have bundled themselves with withdrawal symptoms, as I just went down a bit on dosage, after a too short hold of one week. during which I was feeling good enough to to "too much." Too much is so little that it is extremely easy to do to much!

Or perhaps the craniosacral treatment I had stirred up stuff. Who knows. 


This morning I woke up with the pain already started, which is definitely a bad signal. By 2 p.m. I was started get toward the level 8-10 pain, and not wanted to use ketamine so soon again, went back to what I consider a much more dangerous remedy: two benedryl  and a promethazine suppository. Both are serotonin boosters -- but it did allow me to rest for 6 hours, in and out of sleep, but at least not having my mind overtaken by pain.


Feeling trampled. 

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Glad you found some relief from the intense pain, and got some sleep. 

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Benadryl for withdrawal?

I had such severed neuropathic pain by Saturday ( the day after the 16 doses of ketamine) that I was chose to take benedryl and a phenergan (anti-emetic) suppository. This is the home version of the ER treatment for crippling migraines and neuropathy. I am aware that benedryl and phenergan are not good to take while on venlafaxine, but I needed to break the pan cycle.

As a result of taking the benedryl and phenergan I had no pain for 24 hours, and a slight decrease in withdrawal symptoms.
Anyone have any experience with using benedryl for withdrawal from effexor? Or phenergan?
I do realize that benedryl is an antihistamine and therefore somehow related to SSRIs and SNRIs.
I am desperate to find a way to get off venlafaxine more quickly. At best, at the current rate I won't be off until July 2017.
Since effexor is frying my peripheral sensory nerves, with some affect on motor nerves and ANS nerves, I am literally every day having to take a little bit of poison. I want to speed up getting off it, if at all possible, but I'm not foolish enough to speed it up and create bad withdrawal, as my reading has convinced me that would lead to very long term damage.

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Histamine response??!!!  Possibly?  Obviously?  I don't know though on all your symptoms being a histamine response though......I am not very well read on that.  It's just that you got such relief with the Benadryl promethazine combo.   Also consider that promethazine(?phenergan)  may have that additive effect with the Benadryl.......making it that much more potent........I'm not real sure on this, I could have that wrong.  You are on a lot of stuff.......so hard for me to sort out W/D from just plain medication reactivity........you do seem to have a bit of a grip on it so that's good.


I'm also glad you got some relief.  It sounds brutal.


Have you been to the Beyondmeds site.  I think that Monica has indexed some articles regarding antihistamine dietary stuff you might be able to do.  And possibly stuff there on the histamine response that you might be having.


Good plan though.......to not jeopardize your healing with more abrupt changes in that darn Effexor.


Whoosh........hang in..........err on the side of caution.


Oh, no experience with Benadryl other than when I came off Seroquel I tried a number of antihistamines, different classes of, to try and get some sleep.  I think the one that goes by the brand name of Dramamine worked best........to the best of my recollection.



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Oh dear.


I saw my neurologist at MGH on Thursday, she and her colleague have diagnosed my with both Sensory Peripheral Neuropathy and Central Pain Syndrome.


I knew I had peripheral neuropathy, and last Spring came to understand it was being caused by venlafaxine and chronic moderate serotonin toxicity and also possibly the long term consequences of having Lyme disease. It has continued to spread, and I now have this pain in about 75% of my body. 


Central Pain Syndrome, apparently has been set in motion by either the toxicity or by the withdrawal, or for unknown reasons. From what I have found out about it, asking the docs, reading online, it is a damage to the brain that causes pain, hypersensitivity to arise out of the brain misperceiving sensation and creating pain signals. It appears that it is generally considered life-long and progressive.


I get pain from almost anything -- a ride in a car when the car hits potholes. An emotional experience. Stress. Activity. Anything that is stimulating basically. The pain accelerates over the course of the day and can become extremely intense. I've had pain all my life, and never in my imagination could conjure anything this bad, with the exception of pain from burns - which is definitely worse than this.


The pharmaceutical treatments (except for ketamine) are all off the table, and basically only "control" and "minimize" the pain. 


I've been referred to the pain clinic, and to the Spaulding Hospital Dean Center for Tick Borne Illness rehabilitation. 


There is some sort of treatment which involves intentionally experiencing pain,  that is noxious but not damaging, and taking an approach of curiosity. And mirroring therapy. I need to learn more about these. 


This is my price for taking venlafaxine for 10 years, and AD's for a total of 25 years. 

Aside from the increased pain from the exertion of going to the doctor's visit, and the exhaustion, I am very depressed today and the entire thing has triggered increased autonomic dysregulation (withdrawal) of professed sweating, irritability, rage. Appetite ON. Appetite OFF. Sleeping more than being awake. Temperature up. Yet if I'm too hot and sweaty, the allodynia (pain from air movement) is still in play and perhaps even worse and I have to wrap my body in blankets to avoid searing pain.


Feeling quite hopeless and alone today. And emotional. And YET I must calm down and relax, or  I'll have more pain. 

Off to a disciplined day of sitting on the sofa and watching nature videos and taking more naps. 


PS -- currently holding at 22.22 mg, been here for 3 weeks. 

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I have an appointment in Philadelphia with a doctor who literally "Wrote the chapter" on Central Nerve Pain and has been researching neuroplasticity training for his career.

It will be a difficult trip. 4 hours by Amtrak, then cab, see him for an hour and then return. Hopefully he will have some idea of how I can do neuroplasticity training to rewire my brain.

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Time for an update I suppose.


Since the trip to see Dr. Altschuler in Philadelphia I have been experimenting with mirror neuron therapy -- what I see can override my physical sensation and change the perception of innocuous stimuli  as pain, back to normal. Vision trumps sensation. Example: eating pizza with my sister, sitting next to her. Picked up pizza, burned finger tips, dunked in water. Waited one minute. Did the same thing again. Turned to her to comment on how hot the pizza was and was shocked to observe that she was eating it, and happy. Watched her for 15 seconds, turned back to my pizza, picked up and ate it. Weird huh?


I'm very close to getting an OT that does mirror box therapy. I hope it works for me, or that we can figure out how to utilize it. It's not a standard protocol, but something she, I and Dr. Altschuler will be making up as we go along. It may work. I hope so.

The Central Pain Syndrome has been kicking my butt for months now. I get periods where it is a bit better, and then periods where it's out of control. Recently I had a bizarre switch, from right sided nerve pain that worsens as the day goes on, to left sided joint pain, muscle weakness that starts off really bad in the morning and gets slowly better. The muscle weakness  got so bad I couldn't put on pants or shoes by myself, or get off the toilet seat. Saw my PCP and he put me on 3 days of prednisone. Within 12 hours I could walk again, stand up, put on my on pants, etc. But really not thrilled about prednisone, a real psychiatric havoc wrecker!

I found a Central Pain group on Facebook and found out that ONE PERSON THERE GOT CENTRAL NERVE PAIN FROM VENLAFAXINE. Egads. CPS is chronic, debilitating, very difficult to treat, and does for many end in suicide. ***k! venlafaxine. 


I have been getting back to work, despite the pain and it helps so much to have a reason for existence. I own a yoga studio and teach yoga. 


Have gotten down to 18.05 mg of venlafuxitall. (is that permissible spelling?) Will be Sept 2017 if I can maintain pace of withdrawal.


Hope all of you are moving along, muddling through, getting better, or handling getting worse. 

Aside from the pain, I got completely blown away by November 9th. Still nauseous. Apologies for political commentary, but I'm certain that the election made my health much much worse. 


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Here here Feral Urban.........as far as November 9th goes! 


It does sound like you are having/seeing some progress.  And I will admit to some envy as to some of that East Coast care that you have found your way to.......the mirror therapy and all that neuro retraining.  Do continue to share on some of that when you can.  Oh, and also that you are a yoga instructor with your own studio!  Pretty impressive.


Thanks for the update.





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I for one appreciate your spelling of venlafuxitall :P  Keep going Feral, you'll get there for sure.

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Quoting self from other post on other thread:


"After 11 months away from ER I ended up in the ER again early  on Tuesday morning after a night of an entirely new level of pain. Did you know that you can be in so much pain that your body can't map the pain within the bounds of the body, and your hair starts to hurt? Not the follicles, but the hair itself. And then it can spend out to a "room that is pain." Pain so bad that you loose your identity and exist only as pain? Can't talk, can't move, can't focus eyes. Let's just say I've been learning things I didn't know about pain as I go along."


Venlafuxital has given me Central Pain Syndrome. CPS is pain generated in a sort of echo chamber of the brain between the thalamus and the context, which creates "phantom pain" in the body, even if all the body parts are still there. So that means that my pain is not happening in my  body, but in my brain. I suspect that many here who have pain, this is also true. 


I want to briefly explain CPS and some medical interventions. And perhaps later behavioral interventions. Limited energy here.


CPS is a cycle, feedback loop.

  1. The body experiences a sensation and sends a signal up to the thalamus (CPU for somatic and sensory input except for vision)
  2. The thalamus sends a signal  through the mid-brain to the contex. In the mid-brain the signal goes into a feedback loop and magnifies. This can mean the light touch of a breeze or a cold wet hand on your face can be experienced as pain. Or an actually damage induced pain can be perceived as life threatening. 
  3. The cortext (where we think) says, "Oh ****! I"m in pain!" and sends a signal back through the mid brain to the limbic brain saying "Watch out! Danger!"
  4. The limbic brain switches on the Autonomic system Sympathetic overdrive (Fight/flight/freeze) which amps up the body and puts it on red alert status, looking out for danger. This vigilance itself seeks out pain. So now the whole brain cycle of pain amplification is getting even more signals. 
  5. The ANS sympathetic activation turns on inflammation. Inflammation drives pain.

With this model I now understand two key areas of interventions to reduce pain:

  1. Reduce inflammation. There are many ways to do this, from NSAIDS, turmeric, THC cannabis, anti-inflammatory diet, meditation, laughter, any stress reducing activity or rest.
  2. Reduce pain. Pain control, getting it down is essential to break the cycle. Don't tough it out. But how to do so safely for you? Big questions.
    1. I steer clear of opioids, others may find them useful.
    2. I use NSAIDS some may not like the GI issues.
    3. I use cannabis THC, some may not have access or not like the mental state that comes with it.
    4. I use low dose nasal spray ketamine for the burning nerve pain when it's too much, or at night.
    5. For some reason I don't understand a phenergan suppository with 2 OTC Benadryl can take the pain down. When I go to the ER they give me that, and if that doesn't work
    6. I use valium for muscle spasms, which generate pain.
    7. ER: IV benadryl plus phenergan
    8. ER: IV Ketamine
    9. ER: IV steroids (my pain actually causes paralysis of the muscles and I can't use my left leg at all. 


​I've been using the following to manage pain at home. I know the poly pharmacy isn't the best for me, but it's the best I can do for now. The ultimate goal is to de-bride the med list. Clear out the crap. 

  • oxcarbazepine: theoretically a brake on the CNS overdrive, and one I have not been in good enough shape to experiment with going off, though I will if I get to a level place for at least a month, consider eliminating it.
  • CBD cannabis, infused in oil 1/2 to 1 tsp 3-4 times daily
  • CBD cannabis potent concentrate for escalating pain. Can stop it
  • meloxicam: NSAID of higher potency to try to keep the inflammation down.

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I had two hospital stays  in January and February for severe pain. Unable to walk or stand pain. Dissociative and hallucinating pain. And it was a long six weeks out of the maze of pain. 3 months unable to drive a car and unable to leave the house except for PT fro craniosacral, and that was always a 50/50 deal with could make it better, or make it worse.  


There are details about the emergency room interventions for Central Pain Syndrome. I can share it if it's relevant to anyone.


The turning point was starting micro-doses of liquid prozac -- 1 mg twice a day. My pain levels returned to "normal" 1-4 on the 1-10 pain scale.  The prozac did restart my leg muscle spams, but not at a severe level and compared to the other brain generated pain, not a big deal. Since being on it, I've been able to drop my dose of venlafaxine regularly and I'm now down to 12.5 mg. I've also been able to get off oxcarbazepine completely. 

Feels like a possible deal with the devil, but the venlafaxine was completely kicking my ass. 

I'm starting to build up on not only leaving the house to do things, but to drive myself. Open up the size of my external reality. 


CBD has been my faithful companion and has helped tremendously. 
Low dose nasal spray ketamine has been my rescue remedy. Taken early in an attack, it works much better than if I wait until it's over the threshold.

Laying on frozen clay packs. 


Shamanic journey.


Doing the best I can with anti-inflammatory diet.

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I would love to hear more about your anti-inflammatory diet..........when you have time and or if you want to share.  I have a cookbook, presently I am not being real strict about my intake and doing well enough.  I have found that mushrooms and potatoes are a couple items to really limit(for myself).........perhaps not due to inflammation but they may be too much of the nitrate and oxalate(? sp) load??? 


Shamanic journey-ing.  Sounds great!  Today should be interesting as I am doing Easter at the Lutheran Church and then heading off to do an Inipi.


Of course I would be interested in the ER interventions for CPS as well and what if any other interventions helped..........you did give a good overview above as far as that..........a few posts back.  I take it you discovered more.


12.5 of the venlfuxoneupalot is great!  And off the oxcarbazepine!!!  If you will, and haven't yet..........do an update in your signature too.........could be helpful.  Interesting and great that the mini Prozac bridge has helped with the reduction of that other creepy V drug.


I love the CPS loop description and intervention in your above post as well.


Good to see your recovery/healing post.......most recent.........to what sounds like some tremendous pain and discomforts this past winter.


Best, peace, love, healing, and growth,



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