Long-term withdrawal effects from Effexor XR - HELP!

[mel1027]

I have been off Effexor for about 5 months now. I stopped cold-turkey per my doctor's instruction (BIG mistake!). I thought once I was over the initial withdrawal, I would be fine; BUT I only had a couple weeks of feeling o.k. before I started experiencing all sorts of problems.  I started with muscle weakness and pain in my calves and stomach pain directly below my rib cage.  It then progressed to my arms and now my voice is even weak.  Everything is bilateral.  Has anyone else experienced these delayed, long-term withdrawal effects from Effexor?  If so, did they ever go away?  I'm scheduled for an MRI of my brain to rule out anything more serious such as ALS.  If my tests come back o.k., the doctor mentioned putting me back on Effexor and then weaning me off of it very slowly to see if that gets rid of everything, but I'm afraid to go back on it in case it just makes everything worse.  I am also under the care of a homeopathic doctor and am on several supplements, which have helped greatly with my depression, but my physical symptoms have not gone away. Any advice or help would be appreciated!

[specialmom]

Could any of the supplements you are taking also be having side effects coupled with a re- emergence of symptoms you had prior to taking the effexor??  I only ask because time has passed (did you say it has been several weeks now?) since you stopped cold turkey (can't believe the doctor recommended that!!  YIKES.  At this point, all know that tapering off slowly is the best course of action).  I am wondering if some of your anxiety isn't returning.  

Certainly withdrawel side effects on any of these drugs are unpleasant and that could be part of it but there could be other things going on as well.

I would definately put yourself back under a doctor's care to manage the situation even if it isn't the same one that instructed you to quit cold turkey (as you may have lost confidence in him/her).  

Wishing you lots of luck dear and hope all of the uncomfortable things subside really soon or you find the root cause to treat it effectively.  Peace

[mel1027]

The symptoms I'm experiencing were already present for several weeks before I started the supplements, and I haven't been feeling any anxiety.  The supplements I'm on for my depression have really helped my mental state, so I don't feel anxiety is the issue.  Thank you for your well wishes!

[mel1027]

Thank you so much for your encouragement!  I am beginning to feel like these symptoms will NEVER go away.  I've been on other forums where I read of other people having MS-type symptoms that started a while after coming off the Effexor, but haven't been able to find anyone who followed up with when and if they ever felt normal again.  Some people were a couple years out from coming off Effexor and still having the symptoms, so it's starting to scare me.  Right now I'm just hoping that the brain MRI I have tomorrow morning comes back good because the one thing worse than dealing with these symptoms would be getting a diagnosis of ALS.  If all my tests come back fine, do you think going back on the lowest dose of Effexor and then very slowly weaning from it could reverse any of the muscle issues I'm experiencing?  Thanks!

[mel1027]

Thank you . . . I will check out those sites!  If you don't mind my asking, which antidepressant did you take and what types of long-term withdrawal symptoms did you experience?  I wish I had researched this BEFORE coming off Effexor cold-turkey.  I still can't believe my doctor suggested that now that I know what I know.  I'm glad to hear you are no longer experiencing any symptoms . . . it gives me hope!

[nursegirl6572]

You have to realize that the very extreme horror stories are rare, and a LOT of them end up being not completely all related to the med.  A lot of those horror stories that Ive researched carefully often end up with the person finding out that INDEED there was an underlying medical condition, or, a reemergence of anxiety and/or depression that they attributed all to med side effects/withdrawal.  Try not to spend a lot of time reading those kinds of stories.

ALS in someone your age is literally next to impossible.  In the 18 years I've been a nurse, I've only encountered two people with it.  It's very rare.

Try not to put the cart before the horse.  My Dad always had advice that was very wise (although difficult to put into action)..."save your energy and worry until you KNOW you have something to worry about."

SO true.

[mel1027]

Thankfully, my brain MRI was normal!  Praise God!  My Lyme test was also normal.  Now I just have to hope that these symptoms don't last for several years.  I have an appointment scheduled with a different neurologist for a second opinion, but they didn't have any openings until October.  My doctor suggested I have them do an EMG.  However, from what I've read, most people with the symptoms I'm having go through all these tests, and they all come back normal, so I'm not expecting much. Just wish I knew when I would be "normal" again.

[mainemamagoingcrazy]

I just had a brain MRI as well and it came back clear.  Symptoms: memory pproblems, trouble focusing, brain fog, brain zaps, muscle twitches all over my body, balance issues, mood swings, and bone crushing exhaustion and body aches.  I am just now thinking that all of this started within two months of coming off Effexor XR,  I;ve been off for 9-10 months and it;s not getting better.  Blood work was normal except low Vit D.  Lyme test came back clear.

[nursegirl6572]

Have you considered trying to resume the Effexor?  Sometimes people in these situations give that a try.  Perhaps bring that up to your doc, see what he says.

Remember, as frustrated as you are, it's a GOOD thing that your medical work-ups have been negative!

I pray you find some relief soon.  Please update us when you can!

[mainemamagoingcrazy]

I havent considered it yet.  I literally just realized this could be an Effexor issue.  Withdrawal off the meds was bad but then it was over so I thought that was it.  I wasn't expecting to have more issues down the road and I am still not completely convinced it's the Effexor withdrawal and not something else.  Not sure how I feel about going back on the Effexor though I guess it would give me an answer.  Hmmm.........

[mel1027]

My doctor mentioned putting me back on the lowest dose of Effexor and then weaning me off VERY slowly to see if the symptoms would go away.  I'm not sure I'm ready to risk going through that.  Like you, I went through horrible withdrawal and then felt fine, only to get hit with these symptoms a month or so after being off the Effexor.  It discourages me to hear that you have been off Effexor for about 10 months and are experiencing all these symptoms.  I just want to feel normal again . . . whatever that is.

[mainemamagoingcrazy]

I hear you.....my doc never even considered the possibility it was Effexor related and thought I had MS or ALS (which have been ruled out).  The neurologist didn't link it to Effexor either and thought it was some sort of auto-immune thing and recommended a rheumatologist.  I want answers but more tests sound daunting and now that I see so many other people suffering from the med. long term I am more and more convinced that that is what it is.  I took fish oil today because I read that can help and *knock on wood* today has been better than yesterday.  I won't know anything for a while though as I do have good days and bad days.  Sigh.....it's this huge puzzle and trying to figure it out *****!!!  I wish more doctors knew about the long term effects of this med. and could be more definitive in knowing what we are going through.  Most days I just feel like I am crazy and feel like no one really believes me and they think I am just lazy.  

[mel1027]

I've been seeing a homeopathic doctor for a couple months, and she has me on all sorts of supplements.   I do see some improvement, but it is very slow.  She agrees that my symptoms are from the Effexor.  It's just very frustrating because I had NO idea this could happen; and the fact that there is no definitive answer as to how long this could go on for, just makes things worse.  Hang in there!  I try to look at the positives, such as the fact that I DON'T have MS or ALS, but some days are still very difficult.

[Paxiled]

Not to contradict people on here, but nobody knows how many people suffer extended withdrawals.  Most doctors and psychiatrists are absolutely in denial about this, but it has a name -- protracted withdrawal syndrome.  Google it and you'll get the real story.  Most people don't have this problem, and the most likely meds to get it from are Paxil and the snris (meaning Effexor) because they're really too strong in effect for some of us to get back to normal easily from.  The standard response is to say you're suffering from some previously undetected problem that was covered up by the drug you were on, but this is bogus.  It's withdrawal.  There's a Doctor Healy, a professor of psychiatry in England, who's up on this, and also another psychiatrist in England who did the research on benzos.  You can also get it from alcohol or heroin or any other drug you take for a long time that affects the brain.  Sometimes, it's hard for the brain to adapt to working normally.  It's much harder when you go off cold turkey, but I tapered off Paxil and I got it.  It took me two years to discover on the internet what I had.  Now, this could go away tomorrow.  The safest way to play it is to go back on the Effexor and then taper off as slowly as you need to.  Sometimes going on Prozac and then tapering off that helps, but I don't know if that would work with an snri.  I would discuss this with somebody who will listen to you, but do your homework first -- I didn't and waited too long because my psychiatrist wouldn't even consider it was the lack of Paxil that was the problem.  It was.  Now, even protracted withdrawals usually end for most people, but you never know which one you are, so always play it safe with these medications, or any medication, for that matter.  If your problems are only physiological, that's good -- the worst cases can involve interminable insomnia and a slew of psychological problems you never had before.  For the physiological stuff, some people find fish oil helpful.  As for the homeopathy, unfortunately, if you do go back on the Effexor, it might negate the effectiveness of natural remedies, and given enough time the natural approach just might make you stronger overall.  Whichever choice you make, be strong and intend to get better.  Work at it.  I didn't, and let it get me.  I'm glad you're not doing that.  Because of that, you will get better.  

[nursegirl6572]

You share such helpful information.  As much of a medication supporter I am, I DO completely recognize that this kind of thing happens, and it's so very unfortunate.  Thank GOD for the most part, the very serious debilitating cases (such as yours) are rare.

I'm curious, have you found anything in your research that points toward an effective way to prevent this?  I know you tapered off the Paxil, but maybe an even more slow, deliberate taper (like a year or more even?).  Does this tend to happen more with people on higher doses, or a longer course of treatment, or is it just a crap shoot?

I'm so glad you're hear to guide these people through this.  Sadly, like you said...this just isn't recognized like it should be...and if it WERE recognized and handled appropriately, then meds wouldn't end up getting a bad rep like they sometimes do.

Thanks as always...for your insight, and for still offering non-biased advice, despite the hell you've been through.  I respect you so much for that.  Despite what you've been through, you're not a  "med basher" and you still recognize and acknowledge all the GOOD results people have with meds.

[Paxiled]

My case was actually psychiatrist malpractice, though I didn't sue anyone.  If I had known what I was in for, I would have, but who would have guessed this could last forever?  All he had to do to stop this whole mess, probably, was to put me back on the Paxil.  But he never acknowledged that it was withdrawal, and offered me two very problematic medications because one of the things I got from the withdrawal that I never had before was OCD, so he offered clomipramine or luvox.  Neither was likely to stop the Paxil withdrawal, and both had so many contraindications and side effects that it would have made me worse.  Some think the best thing is to put you on Prozac because it's easier to come off of.  Another psychiatrist tried that, but it was several months later after I'd crawled off the couch and gotten the nerve to study the internet more deeply and it just started to make me worse.  Personally, I am against all medication in theory because it's artificial to the body and insufficiently studied before we're used as guinea pigs to see what happens.  Studies are short term, and pharmaceutical companies and doctors hide the bad info from the FDA.  They say it takes a decade to figure out whether medication helps or hurts, and even then nobody really cares about the people who are hurt -- it's a minority of people and our medical system is entirely profit based.  Basically, health care is sold to us the same as Ipads.  I was never told when I was first put on antidepressants that they could be hard to quit nor was I told about any side effects.  I was put on klonopin years and years ago without being told it was an addictive drug that was one of the most difficult to quit.  Protracted withdrawals and addiction have made benzos very hard to get now in the UK, where more research is being done on this problem than here, but so far nobody knows how to treat protracted withdrawals effectively and nobody's putting much in the way of resources into it because, again, there's no money to be made in scaring people.  Most recent research shows that these drugs permanently alter the brain of a large number of people who use them; that's why you see so many people having to keep going back on them.  So there's three categories of people -- those who will have no problems, those who will have moderate problems, and those who will have major problems, and nobody knows in advance who's going to be who.  Which is why I always say people should exhaust all options, including natural remedies, before going on medication.  But that bring said, I got no relief from spreading phobias until I went on medication, which is why I don't argue to ban them or anything, I just argue for caution and a better way of researching these things before they become widely available.  The profit motive just doesn't work for anything we really need, it only works for things that are nice to have, because when people livelihoods are on the line they just don't act morally.  Too much to lose.  Until we evolve past us vs. them as far as economics is concerned, we'll be stuck with things being falsely advertised and learn the sad results years later.  What we need are meds that work with the body, not against it, but that'll take a lot more time than I'll be alive, unfortunately.  And they're still the best option we have right now for a lot of people, just not as many as are given the stuff.  But whoever said life was easy, or that people were rational?

[sewingaddict]

  Thank you, thank you, thank you.  I now have some information to work with, as I am certain there will not be help from the medical community I have tried to work with.  I will no longer question my own sanity.  I would like to come up with a word or a name for the betrayal that persons in our position are in.

   Like lambs we have gone to slaughter and others are making money from our discomfort.  How long do the "professionals think they can 'snow' us?

   If enough of we sufferers would get angry, then maybe we could make some change!  In the mean time lets stick together.  Today I purchased  some Valerian Rood drops to help with the insommnia.  I am determined to
get a handle on this pharmaceutical deceit.  Is it any wonder we have trust issues.

[mel1027]

NOW it's been TEN months since coming off Effexor, and I'm STILL having major problems with muscle weakness in my arms and especially my legs.  My legs constantly feel like they're going to give out on me.  MRIs, EMGs, nerve conduction studies, blood tests all come back normal.  The strange thing is that I seemed like I was improving and then all of a sudden things got worse.  I don't want to go back on an antidepressant, BUT should I try it and see if the symptoms go away, OR do I keep holding out that ONE DAY I will feel normal again.  Some days are so bad that it's a struggle to do anything.  Has anyone out there ever gotten better after such a long time?  I need hope!

[scrdsibling]

I know this post is 6 years old but I am desperate to try to help my brother. He came off Effexor two years ago. He was only on it for a couple of months (while still in Welbutrin) when he realized it was the wrong medication for him. When he tried to go cold turkey he experienced such severe withdrawal that he was hospitalized - no one thought it was withdrawal. He could not walk and was in excruciating pain. He went back on Effexor and taper off a MG at a time through a compounding pharmacy. He has now been off the medication for over 2 years but is hostile with everyone he encounters and has terminated relationships with most of his friends and is entering divorce proceedings with his wife. He was never this person before taking this medication. What happened ultimately in your case?

[Paxiled]

If you make a new post, you're more likely to get more answers.  But you say he's been off the med for 2 years.  How long after he stopped the med did these new personality traits appear?  If a long time after successfully quitting the med, it's unlikely it's being caused by something that happened 2 years ago and was successfully beaten by going back and doing it right by a slow taper off.  By the way, combining Wellbutrin with Effexor can be a big problem for some, as both are intentionally stimulating antidepressants.  Excruciating pain and inability to walk are also very unusual symptoms of withdrawal.  Not to say it wasn't withdrawal, but these are ones I've never seen reported.  Pain, yeah, especially muscle pain or nerve pain, but pain to the point of not being able to walk?  Might have been something else, such as a reaction to being on these two meds at the same time.  At any rate, as I read this, slow tapering got rid of the problem, and now 2 years later he is having some of the kinds of behaviors one would associate with what brings someone to go on these meds in the first place.  It could be that his mental illness is getting worse.  Is he still on the Wellbutrin?  Is he still in treatment?  And again, how were the 2 years for him between stopping Effexor and the new behaviors?

[mel1027]

Did you EVER get better?  I'm losing hope at this point that I will ever feel like a normal, functioning adult again.

[Paxiled]

No, I never got better -- I keep getting worse.  But again, I'm supposedly a rare case, and I believe that to be true.  There's a website for protracted withdrawals that might help you.  Muscle pain and insomnia are very common symptoms for people with this problem.  It took a few years for it to hit me, but now it's hit me big time, and I too seem to look pretty healthy for an old guy (pushing 60) in the tests.  My newest is plantar fasciitis from, of all things, an elliptical machine, not running or such, and although the MRI says it's a mild case, as with my back, knee, etc., it doesn't go away.  As for going back on the drug, I don't know.  Dr. Healy says no, he says to wait because going back on the drug will put you back at square one even if it works and you'll probably have to take a higher dose.  Don't know if that's true, as no psychiatrist I've seen wants to put me back on a medication that caused so much harm.  If you'd asked me seven years ago, I was terrified and angry as hell at Paxil and so I didn't consider it, but now I wish I'd gone back on it.  But I may have made a mistake by going on Lexapro after about a year because I couldn't take it anymore, so maybe I stopped the process of my brain regaining normal production of serotonin and choline.  I don't know, since I can't go back and have a do-over.  What I will tell you is it's very unlikely you'll have a case as bad as mine -- I'm a bit of an anomaly, which isn't pleasant for me but good for you.  We do exist, but we're not the majority.  The most likely outcome is you will get better.  But you have to decide this one.  If you have the mobility and the money, neither of which I have, you might think about the Mayo Clinic or Johns Hopkins or the Cleveland Clinic -- one of the places where they welcome problem cases.  Because your average shrink doesn't want to deal with this problem -- very bad for business and it takes too much time from their other endeavors.  The shrinks I've seen have told me flat out they will not take the time to research this with their medical schools or anywhere else.  Those types of docs exist, but you have to be able to afford them (no insurance) and be able to travel to where they are.  If you can do that, I encourage you to try.  Do your homework, you're only 10 months in, and be optimistic (I know that's hard, because the withdrawal is probably making you depressed) and try not to avoid, which is my tendency because I'm so scared.  Try something!  Because most do come back eventually.  Peace.

[mel1027]

Thank you for your quick reply.  I am sorry and frustrated that you have not gotten better.  I am tired of searching forums and finding so many people who haven't recovered.  It leaves me feeling hopeless.  As I approach the year mark, I'm afraid I'm going to be one of those who will still be suffering years later.  I just want to read someone's story that ends happily, but I can't seem to find any.  It's hard just keeping up with life (I'm married with three teenage children).  I've tried working, but just don't have the strength/stamina to do it.  I have trouble just doing the normal day-to-day stuff.  The weakness is so debilitating. My husband, fortunately, is very supportive, but he's angry and frustrated as well.  I was truly hoping I had Lyme disease, especially since my son had it and several neighbors have had it.  At least then I could be treated.  John's Hopkins would be the closest to me (I'm about an hour north of Philadelphia), but I just wish I knew of someone who went there and actually got better.  Money is definitely an issue for me too.  What happened after you went on Lexapro a year later?  I'm so close to giving in.

[Lucie845]

I have read with compassion your posts.  I am so sad for the agony you have suffered.  Please continue talking about what you are going thru.  It helps.  
After being on Effexor for almost 15 years I have come to the realization that I may be on it for the rest of my life. I, too, like many others have tried and failed to get off this med!  One of my posts says the med I take may not be helping me anymore because of the length of time being on it but what options I have, I don't know.  The doctor has tried changing my med but I have to take Effexor.  Even the new med doesn't help with the pain I suffer when not taking Effexor.  So, he gives me the Effexor back.  Unless a DEDICATED physician helps me, it is what it is!  
I will remember you in my prayers daily.
Lucie

[Paxiled]

The Lexapro didn't work, which I learned is common since Paxil is much stronger than the other ssris.  But it might for you, since you were on a different class of medication.  Something to try for the pain is to supplement magnesium and take a healthy dose of fish oil every day.  For some reason these drugs tend to deplete magnesium, which is why so many get muscle cramps as a side effect.  You can also see a naturopath and try natural remedies.  My withdrawal was so bad they didn't work for me, but many have reported success with St. John's Wort and relaxants such as passionflower while they overcome the withdrawal.  And if you go on Paxil or Effexor websites, they should have a section of success stories, so you can see people who did get better.  I believe Paxil Progress does.  And again, some have had success switching to Prozac for a time until the withdrawal is done, and it's an easier drug to wean off of.  If you have to stay on Effexor, well, whatever, I guess, but given the time that's passed and it's effects on you, I can see why it might not be a good option.  Life just doesn't work out sometimes, but sometimes it does, so don't give up hope as I have -- I wish I could still form hope, but that went with the Paxil, unfortunately, but I do have hope for you.

[mel1027]

Thank you for your support and encouragement, but I want you to have hope too!  You are right though, life just doesn't work out sometimes.