Protracted discontinuation syndrome

[Whazp]

Hi,

I usually post on another forum that specializes in this but am keen to know if anyone here is or has suffered from protracted discontinuation syndrome. I stopped a SNRI anti depressant 11 months ago that i had been on for 15 years and have since experienced an array of disturbing physical and physiological symptoms that did not exist pre medication. Didn't realize it at first but later discovered i was suffering from protracted withdrawal after discovering many other people describing very similar experiences after ceasing antidepressants. I'm thoroughly over talking to doctors and the psychiatrist about it as all they want to do is prescribe more drugs including benzos and don't believe discontinuation syndrome is serious or long lasting. They think its all just anxiety and its all in my head. Interestingly Public Health England has ordered a review into antidepressants at the request of parliament members to look at withdrawal and dependence due to significant anecdotal and professional reports of serious harm & long lasting severe withdrawal. I'm hoping that this will lead to better out comes for those of us suffering & prevent others from going through this.

[geoff]

Hello Whazp, thanks for posting your comment and sorry no one has replied back to you.

Can I ask why you decided to stop taking your SNRI antidepressant (AD) because this could be the answer to your query?

Geoff.

[Whazp]

Hi Geoff, discovered that my cholesterol levels were being artificially elevated by the drug to unsafe levels.This was confirmed by cholesterol testing done multiple times during drug treatment and directly after stopping treatment where they returned to normal with no other contributing factors such as dietary changes. My doctor was surprised and concerned by the results.

Sadly no comprehensive research exists on discontinuation syndrome and unraveling the complexities of this phenomena is left up to those who suffer from it. However a recent study in the UK found that withdrawal was common in patients and led to severe long lasting symptoms. An extract below from news article below.

"Researcher Dr James Davies, of Roehampton University, said: ‘This new review of the research reveals what many patients have known for years – that withdrawal from antidepressants often causes severe, debilitating symptoms which can last for weeks, months or longer.
‘Existing NICE guidelines fail to acknowledge how common withdrawal is and wrongly suggest that it usually resolves within one week.
‘This leads many doctors to misdiagnose withdrawal symptoms, often as relapse, resulting in much unnecessary and harmful long-term prescribing."

I was never warned of long term effects and the risk of discontinuation syndrome when i was put on these drugs as a teenager.

[Lici]

Hi Whazp,

I too had various levels of discontinuation syndrome after being taken off of various ssris and snris with the longest after being taken off of two related snris that lasted for 6 months each time (albeit not as bad at the 4-6 month stage). I was never warned about it either and it's like it doesn't exist to the many gps I spoke to. It does for psychologists though, I'm currently studying psychology, and withdrawal symptoms were mentioned which I found surprising given my experiences. Trying to get it through my various psycs and gps that it wasn't in my head and that it wasn't mental illness related (Never had brain zaps before being mediated for example, sure did for six months after coming off the snris though!) was painful to say the least! I only found out I wasn't alone in my experiences through finding an American forum/ website that discussed meds and their various side effects.

I'm hoping that more research is done into it, but for the most part (through what I've learnt about the mechanics behind how medications work in my studies), I would tend to lean towards discontinuation syndrome being caused by the sudden adjustment to your serotonin, dopamine and noradrenaline levels being switched to something your brain is no longer used to, which is why it goes away in time. I'd hypothesize that the longer you've been on the meds, the longer it would take for your brain to go back to "normal" so to speak. I might even look at doing my honours or phd on this topic because I'd be very interested to work out the mechanics behind it because it's hell to go through!

[Whazp]

Hi Lici, thanks for the reply. I have actually stopped this SNRI twice in the past 3 and a half years. The first time i tapered from the minimum available dose to 0 over 9 months. I did experience brain zaps for around 6 months and other symptoms such as brain fog & irritability but no bad physical symptoms. I went back on them after 18 months with an instant improvement on irritability, brain fog & ruminating thoughts (from day 1 which i was told was not possible) . I was on them this time around for 4-5 months when i decided to stop because of the cholesterol issues and because i started to develop some signs of panic attacks after taking the medication at night. This time i tapered off over 3 weeks from the minimum dose and experienced discontinuation syndrome significantly worse than the first time around. This time around the physical symptoms have been extreme and unpredictable coming in waves lasting weeks / months and then resolving themselves but being replaced by something different. This bizarre pattern has been described by many others going through the same thing.

I think there is a massive gap between what users are reporting and what the medical profession believes discontinuation syndrome to be. It makes me feel quite helpless and belittled.

I know of the forum your referring to and have been using it to help me get through this. Sadly i may actually have no choice but to reinstate the medication as the syndrome can take years to resolve.

[Lici]

Hi Whazp,

With the snri I was taking, I'd get withdrawal symptoms if I missed a single dose, so it doesn't surprise me that you felt better after a day of taking them again!

I know that there's a massive gap! Doctors etc think that any withdrawal symptoms will go away in a week or two, yet that isn't the experience many people have! It's frustrating that the medical profession doesn't listen to the people having the experiences more.

With starting your medication again, I guess that's where you need to ask yourself if being on them has more benefits than being off of them. While the discontinuation syndrome can take a long time to resolve for some people, it doesn't mean that it will definitely take that long for you. That's where you need to weigh up if the medication actually helps and if the cholesterol problems that come with them are worth dealing with for the benefits you get from them.

For me, there wasn't any benefits to that medication, it made me a zombie. I weaned myself off over 3 months, put up with sometimes debilitating withdrawals over 6 months and rode it out until they went away. I didn't have a life until they went away, but the benefits of not being on the mediation far outweighed the benefits of being on them so it was worth it.

Kind regards,

Lici

[Whazp]

Hi Lici,

I felt good on them the first time around. Life was going pretty well. Second time wasn't the same but it did help quite allot for anxiety and motivation. I'm struggling with a spaced out feeling / brain fog all the time and the world looking unfamiliar and surreal. Additionally i have some serious stress points in my personal life which is deteriorating my health rapidly. I would go back on them but i'm not sure if its going to potentially make the withdrawal syndrome worse at this point. From the stories of others it's not always guaranteed that the medication will work as expected when reinstating during withdrawal. I have tried reinstating very tiny amounts during the withdrawal with mixed results. Sadly i seem to now be sensitive to a number of OTC medications that i used to tolerate quite well.

[Lici]

Hi Whazp,

The brain fog etc is definitely withdrawal, and it will go away in time, but if the other stuff going on that's affecting your health is worrying you enough to warrant medication, have you considered seeing either your gp, or if your gp isn't a mental health practitioner, finding a gp that is and discussing your options? Maybe a different medication will help more for example. I know that when I went on a different medication during withdrawals, that the new meds helped for a while. The thing is, medication was never meant to be a permanent solution like gps seem to think they are. Medication was always about stabilising someone enough that therapy such as cbt would be helpful. Have you had therapy for your anxiety etc along with medication? I know that for me, seeing someone and doing cbt while on medication gave me the skills to deal with stuff better.

When you say that you've tried reinstating the meds, have you done this with gp guidance? I know that negative experiences even getting a gp to believe you about withdrawal symptoms can put you off of seeing one (it did for me at least), but playing around with doses etc shouldn't be done without a gps input. OTC meds can be tricky as they can interact with meds differently. If you're finding that you're more sensitive to them without your meds, then it's probably because the meds dampened the effects of the otc meds.

With my snri, I had to wean myself off of them by breaking the capsule and dividing the balls inside up, taking a few out at a time over months to be able to handle it. When you stopped taking your meds, how quickly did you do it? Did you do it with gp guidance? My gp at the time tried to take me off of them a lot quicker than I ended up doing. Maybe the amount of withdrawals you're feeling is because of coming off of them too quickly?

It's a really tricky situation to deal with really because everyone is different and will have different levels of withdrawals for the same meds. My advice is to talk to a gp that's a mental health practitioner. They've studied mental health on top of their med degree requirements and will be able to help better than a "set and forget" gp as I like to call them.

I'm sorry I can't offer more practical advice as to what to do, I rode the withdrawals, but that was because there wasn't much benefit to being on them. It's a personal decision that's really going to come down to what you think is best for you.

[Whazp]

Hi Lici, Thanks for taking the time to respond.

Sounds like it was the same medication as i split the capsule and counted out the beads to taper off. First time around i did it over 9 months, second time around maybe 4 weeks which was stupid.... I had issues after the first time but nothing as severe and long lasting as the second time coming off. Mind you the doctor said 4 weeks was more than enough to taper off.

I've been seeing a GP through the ordeal (actually a couple) which seems to have a bit of a better understanding all though isn't very familiar with withdrawal. I saw a Psychiatrist which was not very helpful. I felt very uncomfortable talking to her and i am typically a confident well spoken person so this was very unusual. I felt like allot of what i was trying to tell her was being outright dismissed and at the end of the conversation she politely alluded to me having a hypochondria disorder... I was diagnosed years ago with OCD and GAD but i have never been obsessed with thoughts of strange diseases, virus's or being 'sick'. I'm objective enough to know if this was the case. She also wanted to prescribe benzo's which was a red flag as they are not supposed to be used for long term treatment and can cause serious problems.

I'm back to my GP next week to ask for a referral to another Psychiatrist and also to refer me to a Physiologist that may help me make sense of some of this. I think the withdrawal symptoms are slowly easing, but the anxiety and depression are not which means i may have no choice but to restart medication.

[Lici]

Hey Whazp,

Definitely sounds like the same meds! I've been on over 10 antidepressants and only 2 snris that I know of over the years, those two snris were particularly nasty for discontinuation syndrome. I found that some of the anxiety/ depression that I felt while dealing with withdrawals was actually caused by the withdrawals and wasn't an actual relapse, my GAD diagnosis only came about 5 years after stopping the snri, so it was either there all along and never diagnosed, or its something that's new due to new circumstances. I know that the anxiety and depression/ bad thoughts went away at the time with the withdrawals though. It was tough dealing with it at the time though and I honestly thought that I was going to have to go back on them too.

Most doctors and even psychiatrists go by what they're told by the companies etc when it comes to how long it takes to taper off etc I reckon, and while the studies that they do to come up with that number are solid studies, they forget that the 4 weeks is an average, not an absolute for every single person. It may work for the majority of people sure, but there will be people it will take longer for, and people who will be able to taper off in less time. It's frustrating.

It's good that you're seeing a gp through it all. Do you mind if I ask why you're specifically wanting to see a psychiatrist and not a psychologist? Is it because that's who prescribes your meds? Because that's really the only difference between a psychiatrist and clinical psychologist, a psychiatrist is usually more about drugs than treatment such as cbt though in my experience. That's why these days I'll see a mental health gp for meds and a clinical psych for treatment/ diagnosis. It sounds to me like your psychiatrist wasn't really interested in listening and you're definitely making the right decision in seeking someone else. I will always do that myself because psychs of any format are still human with different personalities and they will not always be someone who you click with. Just like anyone you're going to spend any great length of time with, you've got to find someone whose personality clicks with yours, otherwise the treatment isn't going to be very effective!

Yeah benzo's are definitely a short term thing, was she actually looking at that long term? Or was she suggesting that to relieve your symptoms short term? It's strange if it was for long term!

Keep me updated with how things go!

Lici