Tapering off meds

J

Jakehealing

Peer Supporter
A popular tms youtuber has been talking about coming off meds and tapering recently. I am currently tapering myself but have seen comments like “its been 20 years since i came off and im still suffering”. Some one else said they had bad symptoms for 3 years and lingering symptoms for a further 3. I was wondering if people experiencing symptoms long time after coming off is just simply tms?
 
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So you can
Mani said:
Depends entirely on the circumstances (eg which meds, how long youve been using it for, for which purpose you take it, the type of pain)
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so you can get permanent damage from coming off meds? I thought the body heals? Personally im on 20mg of citalopram for 5 years
 
Jakehealing said:
I was wondering if people experiencing symptoms long time after coming off is just simply tms?
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This is really a medical question and no one on these forums will be qualified to answer it. The most you can hope for is anecdotal comments regarding people's own experiences of being on citalopram and how they fared with coming off it. If they fared badly after withdrawal and continue to suffer, then it's not beyond the realms that it could be a mind/body response to the change, or it could be due to the after effects from drug withdrawal. As with any prescription medication going on citalopram is not without risk and coming off it won't be without risk either.

Perplexity.ai told me this, when I asked about symptoms after withdrawal:

"Some people report prolonged symptoms after citalopram withdrawal, but medical consensus views true long-term damage as rare, with most issues resolving over time through proper management.

Prevalence of Prolonged Symptoms
Around 40% experience symptoms for 6+ weeks and 25% for 12+ weeks post-tapering, often including fatigue, mood instability, anxiety, or sensory disturbances like brain zaps, especially after 5 years of use. These can mimic depression relapse, complicating diagnosis, but studies emphasize they're typically self-limiting rather than permanent.

Evidence on Long-Term Harm
Persistent post-withdrawal syndrome (PPWS) is debated; patient forums describe ongoing emotional blunting or dizziness months later, yet clinical reviews find no strong proof of irreversible brain changes from citalopram specifically, unlike shorter-half-life SSRIs. Risks rise with abrupt stops, but slow tapering reduces odds significantly.

Consult a GP (medical doctor) for monitoring when on citalopram and regarding and before and during tapering withdrawal."
 
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BloodMoon said:
This is really a medical question and no one on these forums will be qualified to answer it. The most you can hope for is anecdotal comments regarding people's own experiences of being on citalopram and how they fared with coming off it. If they fared badly after withdrawal and continue to suffer, then it's not beyond the realms that it could be a mind/body/TMS response to the change, or it could be due to the after effects from drug withdrawal. As with any prescription medication going on citalopram is not without risk and coming off it won't be without risk either.

Perplexity.ai told me this, when I asked about symptoms after withdrawal:

"Some people report prolonged symptoms after citalopram withdrawal, but medical consensus views true long-term damage as rare, with most issues resolving over time through proper management.

Prevalence of Prolonged Symptoms
Around 40% experience symptoms for 6+ weeks and 25% for 12+ weeks post-tapering, often including fatigue, mood instability, anxiety, or sensory disturbances like brain zaps, especially after 5 years of use. These can mimic depression relapse, complicating diagnosis, but studies emphasize they're typically self-limiting rather than permanent.

Evidence on Long-Term Harm
Persistent post-withdrawal syndrome (PPWS) is debated; patient forums describe ongoing emotional blunting or dizziness months later, yet clinical reviews find no strong proof of irreversible brain changes from citalopram specifically, unlike shorter-half-life SSRIs. Risks rise with abrupt stops, but slow tapering reduces odds significantly.

Consult a GP (medical doctor) for monitoring when on citalopram and regarding and before and during tapering withdrawal."
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Cheers for your detailed reply! I guess all i can do is go slow for the time being! I just kind of assumed that some of the symptoms would be neuroplastic and if any actual damage occurred the brain would heal like everything else in our body. My doctor told me that citalopram was not addictive and i could come straight off if i wanted, this was when he put me on them. I wonder if he would say something different to day
 
I can give you my experience. I have been tapering off my meds. One of them is gabapentin. If you research gabapentin withdrawals on the internet, you will get so much scary info!!! I was very worried about it and so far, I'm fine. So stay off the internet and ask a medical professional regarding this particular medication if you are concerned.
 
Joulegirl said:
I can give you my experience. I have been tapering off my meds. One of them is gabapentin. If you research gabapentin withdrawals on the internet, you will get so much scary info!!! I was very worried about it and so far, I'm fine. So stay off the internet and ask a medical professional regarding this particular medication if you are concerned.
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Yeah my mum came off that really easily but struggled loads with zopiclone and diazepam! I guess i was just looking for some reassurance which is probably the wrong thing to do when it comes to tms anyway haha
 
Jakehealing said:
Cheers for your detailed reply! I guess all i can do is go slow for the time being! I just kind of assumed that some of the symptoms would be neuroplastic and if any actual damage occurred the brain would heal like everything else in our body. My doctor told me that citalopram was not addictive and i could come straight off if i wanted, this was when he put me on them. I wonder if he would say something different to day
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You're welcome! This is a current UK NHS leaflet about withdrawing and tapering off it: https://www.choiceandmedication.org...erate/handyfactsheetcomingoffcitalopramuk.pdf
 
People dealing with chronic pain/mental illness are almost definitely always tmsers, their nervous systems are likely out of wack, so if they’re on medications requiring a taper (pain meds, antidepressants, benzos etc) that taper and subsequent withdrawal could be the scare event that throws their NS further out of balance and generates further chronic symptoms. And they’ll point to the cessation of medication being the issue and not them being stuck in fight or flight. It’s like when people get an injury or a surgery and blame that for their chronic pain years later, it’s something they grasp on to to justify their reality instead of examining the dysfunctional way they are living. Meds withdrawals are 100% real but for the average person they don’t go on for years, the brain and body adjust and heal.

I guess the gist of what I am saying is is that there is a bias in these anecdotes because the people suffering these symptoms are likely not TMS aware and have no idea what’s actually going on and likely led astray by a modern medical model that has no answer for people suffering with chronic illness. And in their desperation and despair they go to online support groups and tell how coming off the medication ruined them.
 
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Rabscuttle said:
People dealing with chronic pain/mental illness are almost definitely always tmsers, their nervous systems are likely out of wack, so if they’re on medications requiring a taper (pain meds, antidepressants, benzos etc) that taper and subsequent withdrawal could be the scare event that throws their NS further out of balance and generates further chronic symptoms. And they’ll point to the cessation of medication being the issue and not them being stuck in fight or flight. It’s like when people get an injury or a surgery and blame that for their chronic pain years later, it’s something they grasp on to to justify their reality instead of examining the dysfunctional way they are living. Meds withdrawals are 100% real but for the average person they don’t go on for years, the brain and body adjust and heal.

I guess the gist of what I am saying is is that there is a bias in these anecdotes because the people suffering these symptoms are likely not TMS aware and have no idea what’s actually going on and likely led astray by a modern medical model that has no answer for people suffering with chronic illness. And in their desperation and despair they go to online support groups and tell how coming off the medication ruined them.
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I would agree with this however what threw me off was the fact that the people who were saying they had symptoms after coming off for multiple years were commenting on a tms youtube account but they probably just dont believe its tms yet as some had been suffering for over 6 years and even 20 so maybe they just have not put the two together yet
 
Jakehealing said:
I would agree with this however what threw me off was the fact that the people who were saying they had symptoms after coming off for multiple years were commenting on a tms youtube account but they probably just dont believe its tms yet as some had been suffering for over 6 years and even 20 so maybe they just have not put the two together yet
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Yeah I’m inclined to think they just aren’t connecting the dots. There is definitely a spectrum to belief in TMS and understanding what’s actually going on. I wouldn’t worry too much about duration of symptoms, if the underlying mechanism isn’t addressed (dysfunctional nervous system caused by a variety of things - repressed emotions, trauma, cruelty towards self, obsessing over an injury, etc) then they’ll persist indefinitely. It does unfortunately go back to a victimhood mindset, it feel good to say x (physical thing) caused this, rather than me being a total bully to myself, or being a perpetual people pleaser. The latter forces us to reexamine how we’re living and interacting with ourselves and the world. While the former gets us some sympathy points that quickly loses its effect.

people spend their entire lives dealing with TMS and never knowing it. I see it with my parents. I see it in so many people. It’s awfully depressing. It’s hard to change. It’s so hard to undo a lifetime of bullshit.
 
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BloodMoon said:
This is really a medical question and no one on these forums will be qualified to answer it. The most you can hope for is anecdotal comments regarding people's own experiences of being on citalopram and how they fared with coming off it. If they fared badly after withdrawal and continue to suffer, then it's not beyond the realms that it could be a mind/body response to the change, or it could be due to the after effects from drug withdrawal. As with any prescription medication going on citalopram is not without risk and coming off it won't be without risk either.

Perplexity.ai told me this, when I asked about symptoms after withdrawal:

"Some people report prolonged symptoms after citalopram withdrawal, but medical consensus views true long-term damage as rare, with most issues resolving over time through proper management.

Prevalence of Prolonged Symptoms
Around 40% experience symptoms for 6+ weeks and 25% for 12+ weeks post-tapering, often including fatigue, mood instability, anxiety, or sensory disturbances like brain zaps, especially after 5 years of use. These can mimic depression relapse, complicating diagnosis, but studies emphasize they're typically self-limiting rather than permanent.

Evidence on Long-Term Harm
Persistent post-withdrawal syndrome (PPWS) is debated; patient forums describe ongoing emotional blunting or dizziness months later, yet clinical reviews find no strong proof of irreversible brain changes from citalopram specifically, unlike shorter-half-life SSRIs. Risks rise with abrupt stops, but slow tapering reduces odds significantly.

Consult a GP (medical doctor) for monitoring when on citalopram and regarding and before and during tapering withdrawal."
Click to expand...

Agreed - I would be very hesitant to take the word of a TMS Youtuber (unless they are a doctor - but even still it should always be done on a case by case basis and I don't think group/global advice is appropriate at all) with a serious decision like that. This is one area where doctors know best and that's who I would be asking :)
 
Adam Coloretti (coach) said:
Agreed - I would be very hesitant to take the word of a TMS Youtuber (unless they are a doctor - but even still it should always be done on a case by case basis and I don't think group/global advice is appropriate at all) with a serious decision like that. This is one area where doctors know best and that's who I would be asking :)
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Howard schubiner is a professor and im pretty sure he says its tms, i guess i should try and see if i can find more
Stuff with him talking about the subject
 
Jakehealing said:
A popular tms youtuber has been talking about coming off meds and tapering recently. I am currently tapering myself but have seen comments like “its been 20 years since i came off and im still suffering”. Some one else said they had bad symptoms for 3 years and lingering symptoms for a further 3. I was wondering if people experiencing symptoms long time after coming off is just simply tms?
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Good for you! You'll be fine.

It depends on their mind. Positive, full of hope? Or fearful, looking for how others do, to compare with your own situation and ocd about it forever and forever....
 
It's likely TMS, which I think supports the idea of decreasing meds slowly and gradually. It's less threatening to the mind. Still, there are people who advocate for the "just tear the band-aid off and get it over with" approach. Probably depends on your circumstances and what you can manage. Ultimately, it comes down to knowing yourself and your tolerance level.
 
I've done it too but gradually. It took me years. I started to read specific forums about this at that time and it was a nightmare. I ran away from all the discussions and the horror stories. I just wanted to keep my mind calm, serene, at peace and hopeful. And it worked.

It's not going to be easy but it's possible. You need patience.

I have a new mantra that I use now: "Not my circus, not my monkeys!" I do my best to stay away from dramas. They are everywhere around but I don't give them my attention. Or my focus. I stay positive and calm.
 
Jakehealing said:
Cheers for your detailed reply! I guess all i can do is go slow for the time being! I just kind of assumed that some of the symptoms would be neuroplastic and if any actual damage occurred the brain would heal like everything else in our body. My doctor told me that citalopram was not addictive and i could come straight off if i wanted, this was when he put me on them. I wonder if he would say something different to day
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SSRIs in general are a tricky lot and doctors rarely know how to prescribe them properly. They aren’t psychologically addictive but they can cause physiological dependence (which might also be a form of TMS in some cases or at least can be worsened by it). Your doctor is wrong to assume people can just go on and off them with no problems. Some SSRIs, such as Paxil (aka Paroxetine) are infamous for causing opioid-like acute withdrawal syndromes that can last a month or longer. SNRIs like Effexor (Venlafaxine) are likewise known for being associated with nasty discontinuation syndromes that resemble the one associated with Paxil.

That being said, sure, some people literally can be on a high-dose of Paxil for years and stop taking it cold turkey one day and not have any issues from doing so. It’s really a pretty wide spectrum and that’s also part of why I do suspect TMS plays a role with drug withdrawal. There are also people who take a benzo for a week and stop and say it caused them to get post-acute withdrawal syndrome (in cases like that I am 95% certain it is a form of TMS though).

That being said, Citalopram is one of the SSRIs less associated with severe discontinuation syndromes, but it seems to have around the same prevalence for conditions such as PAWS (which I mentioned above) and PSSD (which is basically a variant of PAWS with some particular quirks not often associated with regular PAWS). I’m fully recovered recently from three years of PSSD myself and believe it in most cases constitutes a particularly severe form of TMS that can be triggered by severe acute drug discontinuation syndromes (which is what happened with me). The same logic also applies to benzos and other psychotropic drug categories.

I also want to add that very slow tapering in my experience doesn’t really truly make the chances of getting Post-Acute Withdrawal Syndrome (PAWS) or a variant of it less common. It’s often said on SSRI withdrawal websites and communities that extremely slow tapering prevents it, but this doesn’t seem to be true. There are people who claim to have gotten PAWS after tapering off of 1mg of Effexor (an extremely low dose, basically a microdose), for instance. I think knowledge and realising it is a form of TMS beforehand is probably the best way to prevent it, not slow tapering. Very slow tapering protocols also feed into preexisting fears of getting sick, which likely do make the chances of actually getting sick paradoxically more likely.

SSRI withdrawal and illness related communities are horrible in general (SurvivingAntidepressants and Reddit are good examples of places to avoid like the plague) and not helpful, I’d steer clear of them. There’s a pretty good chance that many of the people online who told you about how they have been sick for 15 years and have ‘irreversible brain damage’ from the drugs were members of said communities, which have basically turned into chronic victimhood mentality cults (something that is also highly associated with TMS).
 
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I just watched a video on Curable and Dr. Stracks answered this question about tapering medications. He said you can't go too slowly on it. Meaning, that sometimes we want to withdraw faster which our body may not be ready for (like a dependence on it) but also tapering really fast can trigger our nervous system and bring the symptoms back. He recommends going slow and not being in a rush which helps your nervous system not feel any danger. He also said that many mainstream medical doctors will tell you to withdraw pretty fast, and in his experience going slowing helps us TMS'ers.
 
Joulegirl said:
I can give you my experience. I have been tapering off my meds. One of them is gabapentin. If you research gabapentin withdrawals on the internet, you will get so much scary info!!! I was very worried about it and so far, I'm fine. So stay off the internet and ask a medical professional regarding this particular medication if you are concerned.
Click to expand...
I'm tapering off Lyrica, similar things. Little increase in pain, but that's normal from a rebound nervous system reaction.
 
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