Did you EVER get better? I'm losing hope at this point that I will ever feel like a normal, functioning adult again.
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!
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.
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?
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.
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.
The vast majority of people who come off these kinds of meds will experience some level of a discontinuation syndrome (aka, withdrawal), but most for people, it is tolerable and short lived. You should have definitely been tapered off slowly, your doctor was wrong to suggest for you to go off cold turkey, unless you were only taking it for a few days.
Effexor is one of those meds that is notoriously hard to come off. There are definitely more horror stories related to Effexor than a lot of other meds. The good news is, even if it takes a lot longer than a person would think, or desire, you WILL get to feeling better. You are doing the right thing by continuing to follow up with your doctor about your symptoms, because another fairly common occurence is that people attribute a lot, or most of their symptoms to drug w/d, when in reality, a lot of times, there is something else going on, even a reemergence of anxiety and depression. It's just always good to keep the assessment process open while you're still experiencing these symptoms.
I would strongly recommend you making sure that the doctor managing this issue is a psychiatrist familiar with these meds. A PCP can manage anxiety and depression to a POINT, but the most optimal doctor to do this is a psych. I also agree that you may want to seek a second opinion from a new doctor, to get a new perspective. Again, unless you were only on the Effexor for a short, short time, your doc should have known that tapering was recommended.
I'm so sorry you are feeling so lousy, and I wish you the best of luck in finding a solution to help get you feeling better real soon! Just try to keep in mind that, while this has gone on FAR too long for you to have to endure feeling so badly, you won't feel like this forever. For some people, and for unknown reasons, it just takes longer for your system to readjust to not having the Effexor on board.
Please keep us updated, we care!