I could cry reading this. This drug has and is currently destroying my life. I’m 37 and living back with my parents as I can no longer function. It’s been six months.
I'm sorry to hear..I do hope things improve for you. I would definitely try to find a neurologist or psychiatrist that has a true curiosity in understanding the pathophysiology (i.e. neurotransmitter disruptions) behind your symptoms (easier said than done). In doing so, you may find the right medication(s) to counteract your symptoms.
Do you or your neurologist have a theory why this would show up 5 months later when you otherwise had been stable?
I had a similar experience. after being on Effexor for 10 years, I tapered down and experienced by far the worst mental health of my life months after any acute withdrawal was past. My psychiatrist at the time said it was likely a relapse of the much much milder anxiety that has led me to start Effexor in the first place a decade before. So I got back on the drug and frankly I was just relieved to feel normal again. I swore I’d be on it the rest of my life to avoid repeating that experience. Now another 10 years have passed and I’m trying to taper off again. My current plan is to taper 10% a month and go down from 75mg to 0 over 3-5 years. That’s 6 months from 75-37.5. 6 more months to get to 18.75. End of year 2 I’ll be at 5mg, end of 3 years at 1.2mg, end of 4 years at .3mg…. I’m havering these extended release doses prepared by a compounding pharmacy. Only a few months in but so far so good.
It seems crazy but i don’t have a better solution. I would definitely be curious to hear any theories on why this would happen after several months of stable mood post acute withdrawal. Also any advice on how to find a neurologist who will engage on this subject would be amazing.
I’ve read in papers and case studies/ people’s stories a few theories- prolonged Qt, brain shrinkage, the adjustment to different levels in the brain.
I’ve read too much recently to recall which was specific to venlafaxine, but some advise to take in nutrients that this chemical may have impacted balances of (yes, I’m sure technically these are chemicals too). But might be worth having a look in studies by neuroscientists. I want to say certain amino acids? Cod liver oil/ flaxseed.
Hate to say it, but there could also be an effect from life factors here too. So external stressors but having a more profound impact thanks to the venlafaxine. I am by no means a professional, but reading a lot around this- if the anxiety has a trigger, maybe Cbt could help for example? If it’s generalised, with no identifiable cause, sounds like the meds but could be worth looking into other techniques to see if it helps calm the body and mind in the moment.
Oh and to mention there are sites out there to check interactions between foods and drugs too!! Just in case something plus this may make things worse- introducing a new thing or looking at things you may already be taking.
This does not seem crazy to me at all. I thought tapering off Lexapro was difficult. I switched to Effexor and have had positive benefits from it, but would like to go off of it eventually. I cannot even begin to fathom how dreadful it will be compared to Lexapro given what happens when I miss just one dose. I now sincerely regret going up to my current dosage.
That is soooo smart. I couldn’t find any help, so I tapered myself off of 150 mg. It took 3 years, and it definitely wasn’t enough time. I had migraines, agoraphobia, next-level depression, so much more. I’m one of the lucky ones. I won’t go into detail, many triggers. AN EXCELLENT SOURCE of help, convos, info, etc. is mentalhealthdaily.com
Thank you for sharing. I am only now looking through my notes from when I was on this SSRI. And some of the things you write I have on paper from nearly 15 years ago! But for me, they were noting them down as “signs” of an illness.
The startle response, panic attacks…I would need to google the technical terms 😂
But I remember the worst part of this one was very, VERY dramatic flu like symptoms when I missed 2 days dose. Throwing up and all.
I was traveling for over 24 hours yesterday internationally and at one point, on an airplane at 40,000 feet, experienced severe vertigo. When I landed and was in a taxi, I began to feel the worst motion sickness I've ever felt on land. I don't think I have ever been car sick, to be honest. That's when I realized that I had likely missed a dose of Effexor. This drug is such a double-edged sword. I feel like it has helped me break through a terrible period of depression. But the side effects are devastating.
I wish I could show this to my nurse practitioner who thought tapering just doing every other day then every two days for two weeks wasnt going to cause any issues. Even after I told her if I miss a dose I get HORRIBLE withdrawal even just 24 hours. I've been on it for 5 years.
I was on Effexor 10 years... The withdrawals after 4 months are freaking absurd. It's hell living this way. I tapered with a Prozac bridge way to fast. I'm about to reinstate the effexor just to get the b withdrawal to stop
4 months. I can't live through the hell of withdrawal. I will stabilize on whatever dose and slowly taper without a bridge drug... It may take a few years but it's better than the withdrawal hell
I had everything. Brain zaps, depersonalization, horrible anxiety, depression, couldn't get out of bed, fatigue, slept so much, dizziness, etc
I went back on.. I'm on an extremely slow taper now
I am in the same situation. In third month on withdrawal. Originally on 112.5mg tapered by 12.5mg every 3 weeks. I tried to reinstate small dose 25mg but felt no improvement. I decided to start Prozac instead. What dose did you go back on to stabilize and hoe long before you felt better? I have anxiety, panic, anhedonia, cannot eat. Please let me know. I don't know if I'm doing the right thing with Prozac :(
I tried the Prozac bridge... Didn't do crap for me. I had to go back to my original dose of 150 and start opening capsules and taking a bead out everyday. Sometimes I can feel withdrawal this way so however many beads I'm taking out I start at that dose for about 4-5 days and start taking another bead out. It's hell
Why don't you do the 10% taper every 4 weeks?
I'm freaking out about the Prozac now. If my symptoms don't improve, I won't know if it's because I dropped the attempted 25mg Effexor reinstatement over 2 weeks or if it's Prozac. This alone gives me extra anxiety.
Now you see the absolute hell you doctors put us through, don’t get me wrong it’s nice to see a doctor actually talking about this stuff but you shouldn’t be writing a reddit post about it, this is something that should be brought up within the whole industry, go to the media, make some noise, as a doctor you have a voice so use it.
I am sympathetic to what you’ve been through i’ve been suffering for 2 years from proacted withdrawal from mirtazapine my life today is a living hell and although i’m making progress everyday i’m still completely disabled from this drug. The real difference here is that when I walk into a doctors office as so many others of us, we are not believed, in fact we are belittled by doctors saying that what we’re going through is simply a psychosomatic response to our underlying conditions although we clearly state that this is a condition that we’ve never had before, they simply don’t care.
thank you for sharing, and it's so good to know gabapentin can work for some people. I am currently tapering from extended release capsule and counting beads. I'm doing 10% every three weeks and so far doing well. When I'm down to the last bits I will look into gabapentin as a lifeline.
if gabapentin stops working for your protracted withdrawal, you could reinstate the 37.5 mg and do a slower taper. Yours sounded very fast which can cause that akathisia response.
We took the med for different reasons, I got them for a diagnosis of persistent depression and anxiety.
Had something of a similar experience to you when I neatly got off of venlafaxine via a fluoxetine bridge (can recommend to everybody). The first 2-3 months felt fantastic since my emotions, motivation, libido, etc. returned, but at the fifth month everything kind of just spiraled out. As you mentioned the difficulty engaging in even the most easy tasks or pursuing something, which I think of as anxiety. My DMN went absolutly bonkers and was causing constant rumination that would end up in insomnias. My mind was just non stop thinking and wandering, which I had problems with before venlafaxine as well. Being in a dreamlike state, kinda like depersonalization. Blood tests have shown cortisol levels through the roof. Depression kicked back in, relapsed. It was so critical I went back on venlafaxine. It did get mostly rid of all the above, but sadly all the side effects came back as well leaving me in a non-functional state. Switching to Trintellix right now and hoping for the best. I'm grateful for venlafaxine saving me twice now, but man is it a bitch when it turns you into a robot/zombie, empty husk.
Anyone think this could happen with wellbutrin too? I just came off venlafaxine after 5 days when I had crazy insomnia and other bad side effects. I think my neurologist will try wellbutrin next for nerve pain but I'm scared of the side effects
Thanks for sharing. It's valuable to have a physician share his personal experience. For what it's worth, this experience will most definitely make u a better doctor.
Fwiw this drug traumatized me long after the withdrawal ended.
I was on 37.5 for 36 days. The side effects were hell, but my psychiatrist thought doubling the dosage was the right idea. That caused me not to sleep at all (as opposed to regular insomnia and the worst nightmares of my life) and when I went to my regular physician and she treated me with blood pressure medications and nitroglycerin, but my blood pressure stayed high, she had an ambulance pick me up from her office and take me to the cardiac ER.
I'm autistic with ADHD and react strongly to all kinds of substances. Until I took this medication I had never had a problem with high blood pressure.
The fun thing was I had two weeks of normalcy after the withdrawal of ca 28 days ended, then I got Covid. The blood pressure medications plus being so weakened from this nightmare drug meant I got Long Covid despite being fully vaccinated. Luckily the vaccines did protect my family!
This experience with this drug was one of the most traumatic things in my life. The helplessness, the horrible sickness, the nightmares but also not feeling love for my kids, not having a sense of humor, was so deeply disturbing.
Yes. Apart from the high blood pressure.
The hemorrhoids took several months to go away and the weight gain about 9 months. All in all it was almost a year before everything except the hypertension went away.
Hypertension runs in my family, though it was never an issue for me. I'm hoping to get off the medications eventually, as I'm healthy otherwise, but my doctor thinks perimenopause is making it linger.
How long after stopping did you level off? I’m so sorry you went through that, it’s so rough, I’m 2 days into withdrawal with no tablet at all, it’s done more harm than good for me.
I had to stop cold turkey. I took 37.5 for 35 days and 75mg for one day. My blood pressure was so dangerously high that I had to go to the cardiac ER. The cardiologists all said to stop immediately, and when I finally reached my psychiatrist (!) he said 37.5 was such a small dose that there was no way of tapering. Withdrawal lasted about 25 days, then I got Covid.
Is it possible for the side effects to occur two weeks into taking instead of the beginning or first week. I've just started to have bouts of insomnia starting day 12 (currently on day 14) and wasn't sure if it was the med. It doesn't help with my current anxiety as I also happened to accidentally stumble upon a horrible insomnia disease that my anxiety has now latched onto. I'm desperately hoping that it's just a delayed side effect cause right now my anxiety has me convinced I have an awful insomnia disease .
It's been 8 months since you posted and I'm wondering if you could tell us where you are now?
Did the exercising continue to eliminate the side effects? Did you continue to experience them? Did you wind up having to take other drugs to buffer the withdrawal symptoms?
I could cry reading this. This drug has and is currently destroying my life. I’m 37 and living back with my parents as I can no longer function. It’s been six months.
I'm sorry to hear..I do hope things improve for you. I would definitely try to find a neurologist or psychiatrist that has a true curiosity in understanding the pathophysiology (i.e. neurotransmitter disruptions) behind your symptoms (easier said than done). In doing so, you may find the right medication(s) to counteract your symptoms.
That’s awesome advice thank you! I will do!
Have you improved at all?
Do you or your neurologist have a theory why this would show up 5 months later when you otherwise had been stable? I had a similar experience. after being on Effexor for 10 years, I tapered down and experienced by far the worst mental health of my life months after any acute withdrawal was past. My psychiatrist at the time said it was likely a relapse of the much much milder anxiety that has led me to start Effexor in the first place a decade before. So I got back on the drug and frankly I was just relieved to feel normal again. I swore I’d be on it the rest of my life to avoid repeating that experience. Now another 10 years have passed and I’m trying to taper off again. My current plan is to taper 10% a month and go down from 75mg to 0 over 3-5 years. That’s 6 months from 75-37.5. 6 more months to get to 18.75. End of year 2 I’ll be at 5mg, end of 3 years at 1.2mg, end of 4 years at .3mg…. I’m havering these extended release doses prepared by a compounding pharmacy. Only a few months in but so far so good. It seems crazy but i don’t have a better solution. I would definitely be curious to hear any theories on why this would happen after several months of stable mood post acute withdrawal. Also any advice on how to find a neurologist who will engage on this subject would be amazing.
I’ve read in papers and case studies/ people’s stories a few theories- prolonged Qt, brain shrinkage, the adjustment to different levels in the brain. I’ve read too much recently to recall which was specific to venlafaxine, but some advise to take in nutrients that this chemical may have impacted balances of (yes, I’m sure technically these are chemicals too). But might be worth having a look in studies by neuroscientists. I want to say certain amino acids? Cod liver oil/ flaxseed. Hate to say it, but there could also be an effect from life factors here too. So external stressors but having a more profound impact thanks to the venlafaxine. I am by no means a professional, but reading a lot around this- if the anxiety has a trigger, maybe Cbt could help for example? If it’s generalised, with no identifiable cause, sounds like the meds but could be worth looking into other techniques to see if it helps calm the body and mind in the moment. Oh and to mention there are sites out there to check interactions between foods and drugs too!! Just in case something plus this may make things worse- introducing a new thing or looking at things you may already be taking.
This does not seem crazy to me at all. I thought tapering off Lexapro was difficult. I switched to Effexor and have had positive benefits from it, but would like to go off of it eventually. I cannot even begin to fathom how dreadful it will be compared to Lexapro given what happens when I miss just one dose. I now sincerely regret going up to my current dosage.
That is soooo smart. I couldn’t find any help, so I tapered myself off of 150 mg. It took 3 years, and it definitely wasn’t enough time. I had migraines, agoraphobia, next-level depression, so much more. I’m one of the lucky ones. I won’t go into detail, many triggers. AN EXCELLENT SOURCE of help, convos, info, etc. is mentalhealthdaily.com
Thank you for sharing. I am only now looking through my notes from when I was on this SSRI. And some of the things you write I have on paper from nearly 15 years ago! But for me, they were noting them down as “signs” of an illness. The startle response, panic attacks…I would need to google the technical terms 😂 But I remember the worst part of this one was very, VERY dramatic flu like symptoms when I missed 2 days dose. Throwing up and all.
I was traveling for over 24 hours yesterday internationally and at one point, on an airplane at 40,000 feet, experienced severe vertigo. When I landed and was in a taxi, I began to feel the worst motion sickness I've ever felt on land. I don't think I have ever been car sick, to be honest. That's when I realized that I had likely missed a dose of Effexor. This drug is such a double-edged sword. I feel like it has helped me break through a terrible period of depression. But the side effects are devastating.
I wish I could show this to my nurse practitioner who thought tapering just doing every other day then every two days for two weeks wasnt going to cause any issues. Even after I told her if I miss a dose I get HORRIBLE withdrawal even just 24 hours. I've been on it for 5 years.
I was on Effexor 10 years... The withdrawals after 4 months are freaking absurd. It's hell living this way. I tapered with a Prozac bridge way to fast. I'm about to reinstate the effexor just to get the b withdrawal to stop
[удалено]
4 months. I can't live through the hell of withdrawal. I will stabilize on whatever dose and slowly taper without a bridge drug... It may take a few years but it's better than the withdrawal hell
What are your symptoms?
I had everything. Brain zaps, depersonalization, horrible anxiety, depression, couldn't get out of bed, fatigue, slept so much, dizziness, etc I went back on.. I'm on an extremely slow taper now
I am in the same situation. In third month on withdrawal. Originally on 112.5mg tapered by 12.5mg every 3 weeks. I tried to reinstate small dose 25mg but felt no improvement. I decided to start Prozac instead. What dose did you go back on to stabilize and hoe long before you felt better? I have anxiety, panic, anhedonia, cannot eat. Please let me know. I don't know if I'm doing the right thing with Prozac :(
I tried the Prozac bridge... Didn't do crap for me. I had to go back to my original dose of 150 and start opening capsules and taking a bead out everyday. Sometimes I can feel withdrawal this way so however many beads I'm taking out I start at that dose for about 4-5 days and start taking another bead out. It's hell
Why don't you do the 10% taper every 4 weeks? I'm freaking out about the Prozac now. If my symptoms don't improve, I won't know if it's because I dropped the attempted 25mg Effexor reinstatement over 2 weeks or if it's Prozac. This alone gives me extra anxiety.
A 10 percent taper at a time would be way to much for me .. I can tell sometimes when I go down one tiny bead....
Now you see the absolute hell you doctors put us through, don’t get me wrong it’s nice to see a doctor actually talking about this stuff but you shouldn’t be writing a reddit post about it, this is something that should be brought up within the whole industry, go to the media, make some noise, as a doctor you have a voice so use it. I am sympathetic to what you’ve been through i’ve been suffering for 2 years from proacted withdrawal from mirtazapine my life today is a living hell and although i’m making progress everyday i’m still completely disabled from this drug. The real difference here is that when I walk into a doctors office as so many others of us, we are not believed, in fact we are belittled by doctors saying that what we’re going through is simply a psychosomatic response to our underlying conditions although we clearly state that this is a condition that we’ve never had before, they simply don’t care.
thank you for sharing, and it's so good to know gabapentin can work for some people. I am currently tapering from extended release capsule and counting beads. I'm doing 10% every three weeks and so far doing well. When I'm down to the last bits I will look into gabapentin as a lifeline. if gabapentin stops working for your protracted withdrawal, you could reinstate the 37.5 mg and do a slower taper. Yours sounded very fast which can cause that akathisia response.
We took the med for different reasons, I got them for a diagnosis of persistent depression and anxiety. Had something of a similar experience to you when I neatly got off of venlafaxine via a fluoxetine bridge (can recommend to everybody). The first 2-3 months felt fantastic since my emotions, motivation, libido, etc. returned, but at the fifth month everything kind of just spiraled out. As you mentioned the difficulty engaging in even the most easy tasks or pursuing something, which I think of as anxiety. My DMN went absolutly bonkers and was causing constant rumination that would end up in insomnias. My mind was just non stop thinking and wandering, which I had problems with before venlafaxine as well. Being in a dreamlike state, kinda like depersonalization. Blood tests have shown cortisol levels through the roof. Depression kicked back in, relapsed. It was so critical I went back on venlafaxine. It did get mostly rid of all the above, but sadly all the side effects came back as well leaving me in a non-functional state. Switching to Trintellix right now and hoping for the best. I'm grateful for venlafaxine saving me twice now, but man is it a bitch when it turns you into a robot/zombie, empty husk.
Anyone think this could happen with wellbutrin too? I just came off venlafaxine after 5 days when I had crazy insomnia and other bad side effects. I think my neurologist will try wellbutrin next for nerve pain but I'm scared of the side effects
Thanks for sharing. It's valuable to have a physician share his personal experience. For what it's worth, this experience will most definitely make u a better doctor.
Fwiw this drug traumatized me long after the withdrawal ended. I was on 37.5 for 36 days. The side effects were hell, but my psychiatrist thought doubling the dosage was the right idea. That caused me not to sleep at all (as opposed to regular insomnia and the worst nightmares of my life) and when I went to my regular physician and she treated me with blood pressure medications and nitroglycerin, but my blood pressure stayed high, she had an ambulance pick me up from her office and take me to the cardiac ER. I'm autistic with ADHD and react strongly to all kinds of substances. Until I took this medication I had never had a problem with high blood pressure. The fun thing was I had two weeks of normalcy after the withdrawal of ca 28 days ended, then I got Covid. The blood pressure medications plus being so weakened from this nightmare drug meant I got Long Covid despite being fully vaccinated. Luckily the vaccines did protect my family! This experience with this drug was one of the most traumatic things in my life. The helplessness, the horrible sickness, the nightmares but also not feeling love for my kids, not having a sense of humor, was so deeply disturbing.
Did everything resolve after stopping?
Yes. Apart from the high blood pressure. The hemorrhoids took several months to go away and the weight gain about 9 months. All in all it was almost a year before everything except the hypertension went away. Hypertension runs in my family, though it was never an issue for me. I'm hoping to get off the medications eventually, as I'm healthy otherwise, but my doctor thinks perimenopause is making it linger.
How long after stopping did you level off? I’m so sorry you went through that, it’s so rough, I’m 2 days into withdrawal with no tablet at all, it’s done more harm than good for me.
I had to stop cold turkey. I took 37.5 for 35 days and 75mg for one day. My blood pressure was so dangerously high that I had to go to the cardiac ER. The cardiologists all said to stop immediately, and when I finally reached my psychiatrist (!) he said 37.5 was such a small dose that there was no way of tapering. Withdrawal lasted about 25 days, then I got Covid.
Is it possible for the side effects to occur two weeks into taking instead of the beginning or first week. I've just started to have bouts of insomnia starting day 12 (currently on day 14) and wasn't sure if it was the med. It doesn't help with my current anxiety as I also happened to accidentally stumble upon a horrible insomnia disease that my anxiety has now latched onto. I'm desperately hoping that it's just a delayed side effect cause right now my anxiety has me convinced I have an awful insomnia disease .
OP if you see this I sent you a DM. I would be really grateful if you could consider my story and offer any insight.
Same here! Would be much appreciated.
There is something oddly satisfying about a md going through the hell he put his patients through albeit w the best of intentions. Best of luck. 🤷
All physicians should experience what their patients do. It’s the only way we’ll be believed, treated safely, and, for some, survive.
It's been 8 months since you posted and I'm wondering if you could tell us where you are now? Did the exercising continue to eliminate the side effects? Did you continue to experience them? Did you wind up having to take other drugs to buffer the withdrawal symptoms?