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Long-term withdrawal effects from Effexor XR - HELP!
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!
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Thank you so much, Lucie. It's hard not having the answers. All that any of us wants is to just feel "normal" again. I have a friend who has tried coming off Effexor but has not been able to. My thoughts and prayers are with you!
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.
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.
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
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
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.
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.
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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!