Discontinuing venlafaxine - what to do about extreme fatigue?

Posted by iceberg @iceberg, Jan 2 11:39pm

I am nearly at week 6 of discontinuing Venlafaxine, I tapered over the last two years, original dose was 300mg. No brain zaps, stomach upset, muscle aches any more just extreme fatigue and feeling miserable day after day. All I want to do is lay in bed playing word games I'm too exhausted to want to do anything. Is there anyone who has been through the same experience who can offer advice as to when this may improve or strategies to help, thank you.

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Profile picture for njoys @njoys

@tisme My independent pharmacist gave me a bottle of empty capsules, a tiny funnel, and a little plastic tray with pinched corners. I empty one 37.5 mg capsule into a small clear glass bowl, press my fingers onto the granules and count them as I move them to a clear glass custard dish. I pour those onto the tray, and funnel them into an empty capsule, cap and repeat. I do this over a plate with a rim, to catch any escaping granules.
To start, I counted the number of granules inside three capsules--an average of 136. (The number may vary by manufacturer.) Then I calculated how many beads I needed to remove for the next lower dose. I'm doing reductions of no more than 10%.
My pharmacist assured me I could do it, and he was right. Good luck.

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@njoys I was told to open a capsule onto a black piece of cloth, count out the beads take 10% out and put the 10% in a gelcap, I would have to do it for each capsule as you're not always guaranteed to get the same number of beads in each capsule.

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Profile picture for mariavictoria @mariavictoria

I wholly agree with you. I was put on 300mg Effexor by my psychiatrist some 4 years ago. No consultation, no advice, no warning. It’s been hell getting off it. Have managed to bring it down to 150mg after two months of weaning, and so far so good. But I know this second half will be a lot more challenging. But U’m utterly determined to rid my body of this terrible drug. Patience and faith in the process! Keep you eyes on the end product and keep going!

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@mariavictoria good luck with your plan. I’m so determined to get off this horrible stuff. I have had advice from (new) doctor on sensible plan so hope to be completely off it in 5 months.

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Profile picture for cupcakevonsprinkle @cupcakevonsprinkle

I'm about 6 weeks post taper myself, done by myself because no one would listen to me. My pristiq destroyed my metabolic system. Raised my cholesterol, triglycerides and blood pressure and messed with my exocrine insufficient pancreas to the extent I might be diabetic now.
18 years of this medicine, 100 mg. This is the hardest withdrawal or thing I've eliminated from my life but I'm hopeful that my physical health will return, somewhat and am looking forward to giving Esketamine/Spravato a try. Never ever ever again will I put an oral antidepressant into my body again, I'd sign up for a lobotomy before even considering such a thing.
Your post made me feel so validated in my decision and also reaffirmed how crappy the withdrawal really is.

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@cupcakevonsprinkle A friend of mine who was a heroin addict in her 20s and was on Effexor in her 40s said getting off of heroin was easier. That, for me, was pretty shocking to hear.

I'm in the same boat as you. Never again will I take an antidepressant. In my case Effexor made me suicidal, a rare but known side effect. I stopped cold turkey, something I don't suggest because it can be dangerous to do so, but I was desperate. The withdrawal symptoms were miserable and persisted for weeks. And based on what I've seen on this forum from others, I feel like I got off easy. And, again like others here, I was not told when it was prescribed how difficult it could be to stop using it. I too wish I'd done more research. It's unlikely I would have begun taking it in the first place.

Patients need to be seriously cautioned about Effexor. Too many aren't.

After my experience and what I've seen here, I question whether it should even be on the market. My impression is that there are as many posts on this forum discussing difficulties with it as there are for all other medications that appear here combined. That's a huge red flag in my opinion.

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Profile picture for sallyo420 @sallyo420

I just went off Effexor starting Jan 1 with very little problem. I was on 225 mg for over 20 years. I did some research and decided to use a Prozac bridge. I called my psychiatrist and told her that is what I was doing so she gave me 37.5mg Effexor and 20mg of Prozac. I was on 75mg and took that to 37.5 and added 40mg Prozac. I had no withdrawal symptoms. I stayed on that for around 5 days. I then dropped the 2nd 37.5 and added another 20-40mg of Prozac. I did the same thing with the next 2, 75mg of Effexor and changed to Prozac. I ended up on 40 mg of Prozac and I stayed on that for a few months because there are some residual withdrawal symptom. In the 3rd month, for 3 days I had migraine headaches that started at 5pm to 11pm. The next day it was 5pm-8pm and the last day the migraine started at 5pm and ended around 6pm and that was it. They then went away. Then a week later I was having trouble with my being able to remember things which was scary and that happened for 3 days, too, and then went away?! As the brain readjusts strange things can happen. I am fully off the Effexor and Prozac and feel better than before so far. I had diarrhea for at least 2 years and couldn't figure out why. Drs. did all kinds of tests and it turned out the Effexor turned on me and when I was down to 75mg of Effexor the diarrhea stopped!! I was on it so long I didn't suspect it was the cause of the diarrhea. I was also on Trazadone to sleep and immediately started being able to sleep when I was off the Effexor?? It feels like the Effexor was revving up my whole system. You can get off Effexor without suffering.

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@sallyo420 - glad you were able to do a full taper and that your psychiatrist was able to come up with a way to get it done that worked for you without suffering - or at least not for long.

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Profile picture for donnaturn @donnaturn

I am also going through a miserable withdrawal after having been on venlafaxine ER for many years. I wanted to share an unusual symptom. I wake in the night with pain in my hands. I bought a pair of hand braces which help, but I also saw a hand specialist who suspected carpal tunnel syndrome and ordered nerve testing. My tests were positive for carpal tunnel in both hands. I thought it was strange that I had no such symptoms before weaning off venlafaxine. The dr. that did the nerve tests suggested that the venlafaxine may have masked the symptoms while I was on it. I looked it up on the web, and he was right. Here is what AI wrote: Yes, venlafaxine has the potential to mask the symptoms of carpal tunnel syndrome (CTS). As a serotonin-norepinephrine reuptake inhibitor (SNRI), venlafaxine is effective at treating neuropathic pain and chronic pain conditions.
Here is how it can affect the diagnosis and experience of carpal tunnel syndrome:
Pain Reduction: Because venlafaxine acts on the central nervous system to modulate pain, it can mask the tingling, numbness, and pain associated with nerve compression, such as in CTS.
Delayed Diagnosis: By masking the pain and sensory symptoms, a person might not realize the severity of the nerve compression in their wrist, potentially delaying a proper diagnosis and treatment
There are also several medical sites, such as NIH, that talk about it. Has anyone else had this experience when withdrawing from venlafaxine?

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@donnaturn Thank you for your post. I was on 75 mg Venlafaxine ER for umpteen years. I am finally (for the third time) weaning myself off very slowly, now at about 12 mg. A year ago, my feet and lower legs started feeling strangely--neuropathy. It never occurred to me that neuropathy is appearing now because I am decreasing a drug that was masking it, but thanks to your post, I believe that is the case.
I also have severe leg cramps nightly, anywhere from my toes to my thighs. I wonder if the leg cramps, too, are a result of decreasing venlafaxine. And would I have had these symptoms had I never been on the drug to begin with? Many questions, few answers.

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Profile picture for tisme @tisme

@njoys I was told to open a capsule onto a black piece of cloth, count out the beads take 10% out and put the 10% in a gelcap, I would have to do it for each capsule as you're not always guaranteed to get the same number of beads in each capsule.

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@tisme - @samrichardson posts here https://connect.mayoclinic.org/comment/694900/ about the advice he was given from his pharmacist about counting beads and detailed information about his research and experience.

Please note that this is not universally recommended as outlined here by a Mayo Clinic pharmacist. https://connect.mayoclinic.org/comment/696464/

The concern is that if the beads are not standardized the dosing by bead counting would be variable. The manufacturer offers no indication that there is any particular amount of drug per bead, and release from the beads themselves could vary from the drug delivery from the bead and capsule since they are not designed to be taken that way.

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Profile picture for Lisa Lucier, Moderator @lisalucier

@sallyo420 - glad you were able to do a full taper and that your psychiatrist was able to come up with a way to get it done that worked for you without suffering - or at least not for long.

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@lisalucier Actually, I studied online and I came up with how to do it. My Psychiatrist went along with it. I really told her what I wanted. Because there is no protocol on this yet, the doctors don't want the liability but it is easy to do. I just studied the internet.

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Profile picture for njoys @njoys

Check out The Maudsley Deprescribing Guidelines, or Mark Horowitz/Outro online. There is such a thing as "protracted withdrawal syndrome" which occurs ". . . in an unknown proportion of patients after stopping psychiatric mediations." It happened to me: about two months after completely tapering Effexor (TWICE), I experienced immediate and horrific withdrawal symptoms overnight. I was forced to resume at a lower dose and am now tapering more slowly--in the middle of what I hope to be a two-year withdrawal from a maximum 75mg dose of Effexor.
Only you can decide your next step. There is a lot to learn about withdrawing from Effexor on this website. I will admit that during withdrawal, I had to force myself to get up, get out of bed, and become physically active. Physical exercise helped me as much as anything; mornings were the worst. I eventually had to resume a lower dose of Effexor, become stable at that, and then begin to wean myself off again, decreasing by no more than 5-10% after becoming stable at each dose.
Good luck.

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@njoys Thank you for your recommendation of The Maudsley Deprescribing Guidelines! My husband found your entry on Mayo Connect and ordered the book from Amazon. It has an amazing amount of information and advice. I have had an absolutely miserable time since November, following a physician's advice on withdrawal from venlafaxine, which I had taken 225 mg. for many years. To add to the misery, I was prescribed desvenlafaxine as I was tapering the venlafaxine. I am so discouraged and my only hope now is that the hyperbolic tapering will work for me. I would encouraged anyone struggling with withdrawal syndrome to get the book. I am taking it to my doctor's appointment this week and telling her this is what I want to do. Good luck to all of you having the same experience.

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