Long term effects AFTER withdrawing from Effexor

Posted by DissidentDaughter @dissidentdaughter, Aug 4, 2018

I am wondering if anyone has had any experience like this. I weaned off Effexor three years ago. After doing so I have gradually developed what is now becoming debilitating chronic pain. I am wondering if there is any way that being on Effexor for 15 years could have caused me to develop this pain now that I am not on it anymore. Thanks for your thoughts. I can’t seem to find any direct related research on this.

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@gerberdaisy11

I see myself in all the comments related to pain after going off Effexor XR (for me just months shy of 20 years).

Within two months of going to zero by a weaning process over 8-10 weeks, I was slammed with unimaginable neck pain. Didn’t make a connection at the time. Almost 3 years later, I still suffer with it, went back to PT, take muscle relaxers (when it’s out of control and I’m losing sleep.). Shortly after, I found my white blood cells/neutrophils were quite low and went to hematologist who believes it’s autoimmune related. About one year and 4 months after zero on Effexor I started having bizarre pains/sensations that woke me in the night.

Here’s the first one: I was woken with what felt like nerves firing, started in my upper body, went through my arms, down my torso and legs and exited through my feet. As soon as that stopped, it felt like a host of butterfly wings were flapping inside my chest and when that stopped I felt the flap in the back of my throat open and close repeatedly. I laid frozen in my bed. Scared because it was more emotionally and mentally disturbing than painful and my mind could not make sense of it. Within weeks, I was awoke to my abdomen aorta beating like crazy, never felt anything like it before or again thank goodness. Now fast forward one and a half years since those episodes, I have so many ED visits with chronic unexplained pains and I was a walker (4-6 miles many days) and now find it difficult. I’ve gone to so many specialists and the most profound comment made my a neurologist is the hospital (I was admitted after getting Covid for the first time in February 2023 with long Covid of dizziness, vertigo and an enlarged right pupil. They thought maybe I had a stroke but I did not. I have gallbladder surgery scheduled for end of October 2023 because December of 2022 I started having panic attacks and terrible pains in the hollow below my chest and right side, episodes of chills where my body temp drops, bowel changes etc. I was in good health and no longer recognize my life. Back to neurologist in hospital- I told him everything and he said - you may need to go back on Effexor or another like drug because it could have altered your neuro transmitters and is causing many if not all your symptoms!!!???!!!

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gerberdaisy 11,
Hi, I have been hit like you , after 5 months of stopping. Admittedly, due to a sudden outside stress event. 8 months later & still no improvement to back to where I was after stopping. I think you possibly stopped to quick (what 20 yr dose were you on?). I have read the longer you are on the drug, the longer it takes for your body to re-adjust. It follows, that a protracted titration helps neurotransmitter re-connections. In effect, a "bridging" excercise. Trouble is, everyone's symptoms seem to differ & it seems to be trial & error to get things to settle down.

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Yes, I find more information today than 3 years ago regarding neurotransmitters etc and I would do things differently today with what I know. I was on 75 for 14 years (that was my sweet dose) life was good. I went on it for a situational life event (never had a panic attack in my life prior to December 2022). In 2015 I had another life event that threw me for a loop and my dose was increased to 150 than in 2019 I spoke with my Primary and said I’m ok but feel blah, she increased my dose to 225. That was a mistake! I think if I had gone back to 75 I would have been fine. Instead, less than a year later, I was in her office determined to go off this drug. I was no longer able to respond to a given situation correctly whether it was to cry or laugh. That was the turning point. I didn’t care about anything that brought me joy in the past. Today, I go to a new doctor and discuss/get back on Effexor. I can’t continue to live like this and if there’s a chance that going back on will restore some of what I’ve loss, I need to try. I was never ashamed to be on medication that improved my life, I simply thought I could do this (meaning get off this drug and no longer be a slave to it). I’ll keep you posted. I need hope, I don’t think any of us can live without hope, not successfully.

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@gerberdaisy11

Yes, I find more information today than 3 years ago regarding neurotransmitters etc and I would do things differently today with what I know. I was on 75 for 14 years (that was my sweet dose) life was good. I went on it for a situational life event (never had a panic attack in my life prior to December 2022). In 2015 I had another life event that threw me for a loop and my dose was increased to 150 than in 2019 I spoke with my Primary and said I’m ok but feel blah, she increased my dose to 225. That was a mistake! I think if I had gone back to 75 I would have been fine. Instead, less than a year later, I was in her office determined to go off this drug. I was no longer able to respond to a given situation correctly whether it was to cry or laugh. That was the turning point. I didn’t care about anything that brought me joy in the past. Today, I go to a new doctor and discuss/get back on Effexor. I can’t continue to live like this and if there’s a chance that going back on will restore some of what I’ve loss, I need to try. I was never ashamed to be on medication that improved my life, I simply thought I could do this (meaning get off this drug and no longer be a slave to it). I’ll keep you posted. I need hope, I don’t think any of us can live without hope, not successfully.

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I just started Lexapro's cousin, Fluvoxamine (Luvox). Anyone tried it? Took me 2 weeks to get of Lexapro 13 years ago. All I did was cry. These drugs are powerful. Forget any kind of sex life!

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@gerberdaisy11

Yes, I find more information today than 3 years ago regarding neurotransmitters etc and I would do things differently today with what I know. I was on 75 for 14 years (that was my sweet dose) life was good. I went on it for a situational life event (never had a panic attack in my life prior to December 2022). In 2015 I had another life event that threw me for a loop and my dose was increased to 150 than in 2019 I spoke with my Primary and said I’m ok but feel blah, she increased my dose to 225. That was a mistake! I think if I had gone back to 75 I would have been fine. Instead, less than a year later, I was in her office determined to go off this drug. I was no longer able to respond to a given situation correctly whether it was to cry or laugh. That was the turning point. I didn’t care about anything that brought me joy in the past. Today, I go to a new doctor and discuss/get back on Effexor. I can’t continue to live like this and if there’s a chance that going back on will restore some of what I’ve loss, I need to try. I was never ashamed to be on medication that improved my life, I simply thought I could do this (meaning get off this drug and no longer be a slave to it). I’ll keep you posted. I need hope, I don’t think any of us can live without hope, not successfully.

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Good morning from SE Ohio with Bob Evans Farms nearby. Just threw that in in case you read this before 10/13-10/15 as the annual Bob Evans Farm Fedtival will be underway and if you’re within driving proximity, come on down and have some fun, eat some great food and enjoy lots of great entertainment and lots of happy folk. Having said that, I feel for you. I’ve been on Venlafaxine for maybe 5-7 years. I was started at .0375 then increased twice up to 150 then reduced down by my request. The dr also prescribed another med which made me lithargic. I recently , 6/29/23 was in NE Michigan on a family vacation and somehow only brought enough of my BP med, and cholesterol med to last for two days. I couldn’t believe how much better I felt. I don’t want to try to explain all of my medical problems right now or my progress but since I’ve got off of those pills I feel much better. As a result of feeling better I decided that I wanted to try to get off of the Venlafexine .0375. I read up on it and didn’t ask permission from my doctor “ which I’m not advocating” but I just went head and began to wean myself off of the meds for the next three weeks. It’s been maybe 4 weeks total now since I’ve been off V, and I have been through the usual feelings of being dizzy little headache and just feel like my radio is off-center lol. I do believe in the power of prayer and I will be praying that the Lord will give you a clear path to take. I’m still in search of a better diet, exercise and a better life regiment that can get me feeling the way I should be feeling at age 69. I’ll close by saying I spoke to another gentleman who had just went through a similar process and he told me that in his experience it took about three months to get through the side effects of the withdrawal from the Venlafexine. I will say that he had very different story than myself as he was on some other type of psychotic meds and he said that he was even suicidal at some point. So for your own safety you probably should be under the care of a health professional if you are going to make a change. And from what I read of your story it appears that you are wise enough to know that. Best wishes and prayers for you.

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I’m sorry you are going through this, as many of us are. I was also never ashamed of taking medication of this nature, but now that I’ve been taking this for over 10 year,— I wish I had sought alternatives instead.

I’ve tried coming off this twice, and each time it’s been so difficult due to extreme anxiety, especially while driving which is so dangerous. I’ve felt like i want to come off. I wouldn’t mind feeling the pain and panic attacks again. Except that I am terrified of putting others in danger if I’m panicking while driving.

EDIT: Please share what dietary changes you’ve made. I wish you much luck.

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@love57

I’m sorry you are going through this, as many of us are. I was also never ashamed of taking medication of this nature, but now that I’ve been taking this for over 10 year,— I wish I had sought alternatives instead.

I’ve tried coming off this twice, and each time it’s been so difficult due to extreme anxiety, especially while driving which is so dangerous. I’ve felt like i want to come off. I wouldn’t mind feeling the pain and panic attacks again. Except that I am terrified of putting others in danger if I’m panicking while driving.

EDIT: Please share what dietary changes you’ve made. I wish you much luck.

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I basically purged from herbal supplements for 2-3 weeks. I have resumed several but only 1/3 to 1/2 of what I’d been taking. I had already been cutting back on the amount of caffeine I was drinking which wasn’t all that much any how. I’m down to two or 3 6oz cups of 50-50 blend coffee in the morning. I will drink a little bit of coffee sometimes in the afternoon if I get fatigued and will drink maybe a half of a ZippFizz. I’d like to note
that I don’t need near as many naps as I used to and instead of having to take a one hour to 1 1/2 hour nap usually it’ll just be a 20 minute power nap in the afternoon. I’m cooking more and eating a little less sugar. I’m a drinker so I’m still consuming alcohol in the evenings with my wife, mainly as we sit outside a campfire in our backyard. It’s very relaxing. I hope I didn’t mislead you as I’m only into my 4th or so week without .0375 mg Venlafaxine. Today seems like it could’ve been my best day although I’m still a little bit lethargic but I have not been experiencing any noticeable dizziness in my “radio”which seem to be off-center, seems to be better now… i’m just using my radio being off center to figure of speech for my overall wellness and just the way that I feel mentally and emotionally

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@texasduchess

@terri672
I was only on Effexor (25mg regular release) for hot flashes. I never had anxiety, insomnia, akathisia, irritability and rage UNTIL I tapered off (last dose was 4/14/18). Effexor increases/regulates the levels of two brain neurotransmitters--norepinephrine (noradrenaline) and serotonin. At low doses, it prevents serotonin reuptake (leaves more serotonin in the system). At higher doses, it inhibits both serotonin and noradrenaline reuptake. Serotonin helps control a number of processes within the brain--mood and emotions, anxiety and aggression, sleep, appetite, memory and perceptions. Norepinephrine is a stress hormone that affects parts of the brain that relate to attention and response and it underlies the fight-or-flight response. I realized pretty quickly that the overwhelming feelings, insomnia and akathisia were Effexor withdrawal symptoms. It's going to take some time for my brain to balance itself (I was on Effexor for 18 years); I found relief in taking supplements (click on my name to read past posts where I list them). If you were on Effexor for mental/emotional issues, you may need to go back on it, or try a different medication.

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I have been on Effexor for many years now. It has really helped with my depression that I have always had.
I did try to cut back on Effexor years ago but I didn’t feel good so I went back. What reason do others have for getting off Effexor? Is it the fear of being dependent, is it the cost, or just not needing to take it anymore? I would be interested to know the reasons.

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@janet7

I have been on Effexor for many years now. It has really helped with my depression that I have always had.
I did try to cut back on Effexor years ago but I didn’t feel good so I went back. What reason do others have for getting off Effexor? Is it the fear of being dependent, is it the cost, or just not needing to take it anymore? I would be interested to know the reasons.

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This is by no means a definitive list, but here are some reasons why people quit Effexor/venlafaxine:

* It quit working for their mental, or emotional issues.
* Their doctor wants to put them on a different medication.
* It can interact with other drugs a patient takes, or may need to take.
* The person starts having suicidal thoughts and indulging in risky behaviors.
* The person feels "foggy," or perhaps, has a blunting of any/all emotions.
* It's causing health issues—raising blood pressure, weight gain/loss, dizziness, nausea, constipation, affecting eyes/vision, sweating, insomnia, etc.
* The person wants to get pregnant and doesn't want this drug to affect the fetus; it may also cause a miscarriage.
* Men might have difficulty achieving/keeping an erection during sex and both sexes can have difficulty reaching an orgasm, or even lose their sex drive altogether.
* They can no longer afford their prescription.
* Loss of insurance coverage, or insurance no longer covers the cost, or allows the drug.
* It is difficult, or impossible to get this medication in some places.
* Missing even one dose can cause withdrawal effects—some people are not good at keeping on a dosing schedule.
* If it's being used off-label to mitigate hot flashes, the person may no longer need it after a number of years.
* The patient can no longer get a prescription (their doctor retires or leaves the practice, or even drops the patient).

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@lisalucier

Hi, @dissidentdaughter -- I'm really sorry to hear about the chronic pain you have developed. That must be very difficult. You are wise to consider all possibilities that might have led to this debilitating pain.

What I thought might be helpful would be to tag some members who have completed their taper off of venlafaxine (Effexor) and see what they have to say about any lingering side effects in their experiences, like @texasduchess @cathy615 @sadiesmom @aririkatotomoto @lalyfa. @gailb and @hopeful33250 may also have some thoughts.

@dissidentdaughter -- have you had the chance to ask your doctor what he or she thinks about a potential link between the medication and your chronic pain?

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Hello @dissidentdaughter , I hope you are feeling better now.

I'm so disappointed in our Medical system!

Nobody tells you about these things when first getting prescribed Venaflexatine/ Effexor!

I just took my last dose after weaning off slowly and now I've been experiencing since horrific side effects for about 4 days.

Very disappointed in BigPharma.

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@janet7

I have been on Effexor for many years now. It has really helped with my depression that I have always had.
I did try to cut back on Effexor years ago but I didn’t feel good so I went back. What reason do others have for getting off Effexor? Is it the fear of being dependent, is it the cost, or just not needing to take it anymore? I would be interested to know the reasons.

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As I've commented in other posts, I was on Effexor XR for way too many years. Created copious issues, the worst being terrifying hallucinations and mind-blowing night terrors. AND high blood pressure issues, which I have up to this day (taking 2 medications, metoprolol succinate and losartan). The horrid effects on my life affected my emotional and mental health, so definitely was not being effective on those aspects! But did not go cold-turkey. Had guided help from a neurologist who created a weaning-schedule. Took a seriously long time to finally be off the drug. I learned over time that I'm highly sensitive to all antidepressants (tried several), pain killers, and even statins. Lucky me🙄.

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