I'm 23 and I've been taking psychiatric medication since I was 17. My parents first sent me to the psychiatrist then because I was struggling with depression, impulsivity, emotional outbursts and self-harming behaviour. I managed to finish my A levels but dropped out of university after 4 months because of my mental health. I haven't really been able to get my act togetherand launch into proper "adulting" since.

Over the next 6 years, I was prescribed several different medications, sometimes in combination. These included Sertraline, Quetiapine, Lamotrigine, Aripiprazole and, most recently, Fluoxetine.

I was on Fluoxetine for just over 2 years. I tapered over four weeks as instructed and have now been completely off it for three months. I came off because I had actually stopped self-harming and was beginning to realise that maybe my struggles were related to ADHD. I got a formal diagnosis 4 months ago. The ADHD clinic mentioned that Fluoxetine could interact with stimulants and I got scared so asked my psychiatrist to come off it.

Since stopping, I've experienced some really strange symptoms, including brain zaps, dizziness, derealisation, jiytery anxiety, insomnia, night sweats, nausea, tingling and burning sensations in my limbs, emotional numbness, difficulty concentrating, muscle twitching and episodes of uncontrollable crying.

Some of these symptoms are completely different from anything I experienced before taking medication.

I've spoken to my Psychiatrist about this, but I don't feel like I'm being taken seriously. He told me that even though Fluoxetine stays in the body for a long time, my symptoms are unlikely to still be withdrawal. He thinks that I'm becoming overly focused on normal bodily sensations and my original depression is returning. This makes no sense to me because it feels really different. But then again, I haven’t had depression for a long time so I'm not sure I remember what it feels like.

I've been told that I should start the stimulants now, and everything will be fine. I have read they only stay in the body for 8 hours and don't have a proper withdrawal syndrome like anti-depressants so they might be okay. I'm still a bit scared though. My mum is upset because she paid private for the ADHD assessment after I convinced her it was the root cause of my issues (which I think it is), but now she says it was a waste of time and money if I don't start the meds. But I just feel really weird and unwell. Like a combination of the flu and a hangover most days.

Has anyone taken stimulants whilst still in withdrawal? Did they make things worse? Could this be something else and I am just imagining this? I do wonder whether I actually have long COVID or something like that, but I didn't actually have a viral illness. I also wonder if I should get tested for autoimmune diseases, as I've read they can cause strange symptoms.

Thanks for any help.

Welcome to the forum!

 

This is a volunteer-run, community forum aimed at helping those who are tapering and/or experiencing difficulties with psychiatric medications and withdrawal syndrome. We are not medical professionals and cannot offer medical advice. We simply offer support and opinions which you could use as talking points with a medical provider knowledgeable in withdrawing off psychiatric medications.

The value of this forum is in the community it fosters. We hope that all of our members will be able to learn from each others' experiences, both the good and the bad. To this end, we strongly encourage members to not only document their personal journey on their own thread, but to read and post on other members' threads and otherwise make full use of the resources available throughout the forum.

 

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Please make sure your signature is kept up to date with your drug history. This will allow members to see some basic information about your drug history and situation so that they may help you best. Information on how to do this is located in the FAQs section above, but here is a direct link: Update Signature

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Please use the format outline here Preferred signature/drug history format

8 minutes ago, Saffron said:

I'm 23 and I've been taking psychiatric medication since I was 17. My parents first sent me to the psychiatrist then because I was struggling with depression, impulsivity, emotional outbursts and self-harming behaviour. I managed to finish my A levels but dropped out of university after 4 months because of my mental health. I haven't really been able to get my act togetherand launch into proper "adulting" since.

Im very sorry to read this. I don't think anyone and certainly not young people should be put on these drugs. There is little to no research that they help people more than placebo. Their main action is emotional numbing which wears off over time due to tolerance. The potential for harm, especially from long term exposure, multiple dose shifts and switches, is not worth the risk imo. There are so many things that can cause people to feel strong emotions, lack of exercise, poor diet, lifestyle, stress to name a few. Too often doctors reach for the prescribing pad when they should be looking at the route causes.

11 minutes ago, Saffron said:

Over the next 6 years, I was prescribed several different medications, sometimes in combination. These included Sertraline, Quetiapine, Lamotrigine, Aripiprazole and, most recently, Fluoxetine.

I was on Fluoxetine for just over 2 years. I tapered over four weeks as instructed and have now been completely off it for three months. I came off because I had actually stopped self-harming and was beginning to realise that maybe my struggles were related to ADHD. I got a formal diagnosis 4 months ago. The ADHD clinic mentioned that Fluoxetine could interact with stimulants and I got scared so asked my psychiatrist to come off it.

This is far too quick a taper. Doctors and medical professionals more often than not don't realise this. The NHS should know better at this point, perhaps this was the private practice you have been to for the ADHD diagnosis? We suggest either following a hyperbolic taper plan or reducing your dose no more than 10% of the previous dose every 30 days. This is our document on tapering. Tapering Information

 

13 minutes ago, Saffron said:

Since stopping, I've experienced some really strange symptoms, including brain zaps, dizziness, derealisation, jiytery anxiety, insomnia, night sweats, nausea, tingling and burning sensations in my limbs, emotional numbness, difficulty concentrating, muscle twitching and episodes of uncontrollable crying.

Some of these symptoms are completely different from anything I experienced before taking medication.

This is classic antidepressant WD. You stopped the drug too quickly it takes weeks for Fluoxetine to leave your system so WD is often delayed.

14 minutes ago, Saffron said:

've spoken to my Psychiatrist about this, but I don't feel like I'm being taken seriously. He told me that even though Fluoxetine stays in the body for a long time, my symptoms are unlikely to still be withdrawal. He thinks that I'm becoming overly focused on normal bodily sensations and my original depression is returning. This makes no sense to me because it feels really different. But then again, I haven’t had depression for a long time so I'm not sure I remember what it feels like.

We see it often, patients gaslit into thinking they are experiencing a return of their underlying condition. As you correctly realise you are suffering from WD.

15 minutes ago, Saffron said:

I've been told that I should start the stimulants now, and everything will be fine. I have read they only stay in the body for 8 hours and don't have a proper withdrawal syndrome like anti-depressants so they might be okay. I'm still a bit scared though. My mum is upset because she paid private for the ADHD assessment after I convinced her it was the root cause of my issues (which I think it is), but now she says it was a waste of time and money if I don't start the meds. But I just feel really weird and unwell. Like a combination of the flu and a hangover most days.

Im going to level with you on my feeling about ADHD. Personally I am not a fan of the diagnosis model. You can't do a blood test for these conditions, they are a group of symptoms bundled together and given a 4 letter acronym and then drugs added to treat. I think it's nonsense. I know many people with this diagnosis would strongly disagree, and that is fine and I respect that. I think many find it useful to have a title to explain how they have been feeling. And I am ok with that too. What I am not ok with is folk being told these drugs will solve all their issues and in reality there is huge risk they will harmed by them.

@Sminismoni is a member on here who was harmed by ADHD drugs and is also a Psychiatrist in the NHS. I would advise anyone considering taking drugs to treat ADHD to not. Someone in WD, in my opinon, should absolutely not consider it.

Parents often cause issues for members on here, not because they mean to, but because they often don't understand the harm that has been caused, and continue to put pressure on their children only resulting in making things worse. @Kahran will no doubt tell you all about that as he has recent first hand experience of this.

I think you have two choices:

1. Stay off the drugs and wait to recover. Do you have any windows and waves? How would you rate your symptoms at the moment out of 10? 10 being severe and 1 being mild? Are things improving at all for you?

2. Try a low dose RI of Fluoxetine. The only way to ease WD apart from time is RI. High doses are seen to make people worse, low doses can act as a crutch to support the nervous system whilst it stablises. If this is something you wish to try we can help and suggest a starting dose. Here is our document on RI. Reinstating an Antidepressant

I can't tell you what to do, but I can share my thoughts and the experiences of the community so you can make a choice as to what is best. Your Mums money doesn't come into this. You must decide, you alone.

In the mean time this is what I would do if I were you:

 

-Stay Hydrated 

 

-Eat a good clean whole food diet, avoiding processed foods and sugars.

 

-Stay away from caffeine, alcohol and antihistamines and any other psychoactive substances.

 

Supplements are to be avoided initially, as they often irritate our nervous systems. Try to get your nutrition through food.

 

Down the line, you may wish to introduce Fish Oil and Magnesium. Those who can tolerate them have found them calming to the nervous system. Be careful try one at a time and start low and see how you get on should you choose to try them.

 

A daily walk is very important as much as you can manage, if you can manage it. Gets you your fresh air and Vitamin D does wonders for your mind!

 

You are very welcome here and I hope you find the site supportive.

Chippy

Thank you for replying. I am assuming RI means reinstatement? At the moment I can't get another script for Fluoxetine. I am open to the NHS mental health team, and my psychiatrist appointment isn't until December. It's been removed from my NHS App and the GP won't prescribe it. My psychiatrist last saw me in June and said he wanted me to start the stimulants with my private provider, then he would see me after I had finished titrating up, and if I was okay then, they would discharge me back to my GP.

If I can get an earlier appointment, should I just ask to start on 20mg? I was on 60mg before. Will going back on a low dose of Fluoxetine get rid of most of the withdrawals? I don't really want to go back on the full dose.

At the moment I feel sick every day and I can't do much. But then, I have struggled with executive dysfunction and amotivation my whole life, so it might also be me. But even so, I used to love playing the SIMS but I can't focus on that now. My head hurts a lot and feels heavy. I walk our dog but that's an effort. I sometimes feel anxious outdoors which is weird, like agoraphobia, like the sky and the space around me is too big. I have read a few threads here, but I'm still not sure what a window is, so I don't know if I've had one. Sometimes I feel better at night?

Your story sounds very similar to mine, right down to the "ADHD being the main cause". You seem very in tune with your body, everything you said is correct.

1 hour ago, Saffron said:

Has anyone taken stimulants whilst still in withdrawal? Did they make things worse? Could this be something else and I am just imagining this? I do wonder whether I actually have long COVID or something like that, but I didn't actually have a viral illness. I also wonder if I should get tested for autoimmune diseases, as I've read they can cause strange symptoms.

This is something I never really mentioned in my signature since this forum was more for antidepressants but I took Vyvanse 50mg as I cold turkey'd from Lexapro. This was technically already part of my medication stack anyways. In retrospect, it really did not do much for me at all. Sometimes I could focus a little better, but you still get all the side effects from the stimulant and the daily crash is horrific. You also definitely get withdrawals if you stop taking it abruptly. Nothing crazy like SSRI sensations, but anhedonia, extreme sadness, and complete executive dysfunction. Its why youll read stories of people who cannot get out of bed without taking their stimmie.

I once fasted for 5 days and on the night of the fifth day, did a night hike up a mountain drinking only honey and salt water for 4 to 5 miles. The crash from a 50mg Vyvanse was more exhausting than that experience.

So no, I wouldn't start a stimulant. Most positive experiences you hear online are from people who are just starting them and in that honeymoon period. People with long term exposure slowly realize they do more harm then good.

15 minutes ago, Saffron said:

Thank you for replying.

Pleasure.

15 minutes ago, Saffron said:

I am assuming RI means reinstatement?

That is correct!

15 minutes ago, Saffron said:

At the moment I can't get another script for Fluoxetine. I am open to the NHS mental health team, and my psychiatrist appointment isn't until December. It's been removed from my NHS App and the GP won't prescribe it. My psychiatrist last saw me in June and said he wanted me to start the stimulants with my private provider, then he would see me after I had finished titrating up, and if I was okay then, they would discharge me back to my GP.

I can understand, getting access to the drug can be tricky and finding someone willing to prescribe it.

16 minutes ago, Saffron said:

If I can get an earlier appointment, should I just ask to start on 20mg? I was on 60mg before. Will going back on a low dose of Fluoxetine get rid of most of the withdrawals? I don't really want to go back on the full dose.

Two things. I would suggest a much lower dose than that. I am not sure if you are aware of the hyperbolic curve? We mention it in our tapering document. Essentially, the more drug, the less effect it has on the brain. So once you get past a drugs plateau more drug has very little impact. So for 20mg would be a lot of drug still. If you decided we would give you a more thoughful suggestion, but possibly around 1mg to start. That probably sounds too low. And it might be, however that initial dose is to test the waters and check for a reaction to the drug. From there careful updoses can be made until the best dose for you is found.

You would need to just ask to be put back on 10 or 20mg and essentially be selective about what you tell your doctor as they won't likley respect your desire to RI a lower dose. It is awful we have to do these things but in WD we have to do what is best for us. Should you decide this is what you want to do. You could tell them your intentions, they might understand, I suspect they wouldn't.

This is of course if you think Ri is the right course of action for you.

21 minutes ago, Saffron said:

At the moment I feel sick every day and I can't do much. But then, I have struggled with executive dysfunction and amotivation my whole life, so it might also be me. But even so, I used to love playing the SIMS but I can't focus on that now. My head hurts a lot and feels heavy. I walk our dog but that's an effort. I sometimes feel anxious outdoors which is weird, like agoraphobia, like the sky and the space around me is too big. I have read a few threads here, but I'm still not sure what a window is, so I don't know if I've had one. Sometimes I feel better at night?

Unpicking what is you and what is WD can be hard. I suspect most of what you are experiencing is WD from my experience and I think it is best to assume this for the minute but I will leave that for you to decide.

Can you rate your symptoms out of 10 for me 1 being mild, 10 as bad as you can imagine? Have they fluctuated or improved over time?

Windows and waves is the non linear up and down pattern of symptoms we observe in the community. The Windows and Waves Pattern of Stabilization

Feeling better at night is very common indeed.

2 hours ago, Saffron said:

I was on Fluoxetine for just over 2 years. I tapered over four weeks as instructed and have now been completely off it for three months. I came off because I had actually stopped self-harming and was beginning to realise that maybe my struggles were related to ADHD. I got a formal diagnosis 4 months ago. The ADHD clinic mentioned that Fluoxetine could interact with stimulants and I got scared so asked my psychiatrist to come off it.

I spoke to Angela Peacock who is a withdrawal coach that has gone through it. She noticed that a lot of SSRI related symptoms mimic ADHD so a lot of people end up on that route and I can agree. It's why we now have the ADHD epidemic in the first place. Not to mention that the withdrawal from stimmies mimic depression, so then people end up on SSRI's!

Personally, I'd just try to cope with the symptoms you have currently and not take anymore drugs. They will pass over time as long as you let them. Advocate for yourself too against your mother and doctors. You yourself know what the best thing to do is.

@Chippy I'd probably rate my symptoms at around 6/10 overall, although some days are definitely worse than others.

I've developed quite bad agoraphobia, which I've never experienced before. Going out feels overwhelming, especially being around lots of people or in busy places. Everything feels kind of distorted. I've started avoiding going out unless I absolutely have to, which is really affecting my life.

I also feel kind of restless, and not focussed, so I can't watch TV for long or even read much. I am figetting a lot and bouncing my knees. Again, this is one of those things where I can't tell if its me or not. I don't recall having this previously but maybe the diagnosis has made me hyperaware of these traits that were always there. It doesn't feel good, that's for sure.

Physically, I still get brain zaps, dizziness, tingling and burning sensations in my arms and legs, muscle twitching and nausea. My sleep is pretty terrible too, and I often wake up sweating.

So if I take just like 1mg Fluoxetine will that even be enough? How do I get that tiny dose? Do I tip the capsule into water?

5 minutes ago, Saffron said:

I've developed quite bad agoraphobia, which I've never experienced before. Going out feels overwhelming, especially being around lots of people or in busy places. Everything feels kind of distorted. I've started avoiding going out unless I absolutely have to, which is really affecting my life.

I also feel kind of restless, and not focussed, so I can't watch TV for long or even read much. I am figetting a lot and bouncing my knees. Again, this is one of those things where I can't tell if its me or not. I don't recall having this previously but maybe the diagnosis has made me hyperaware of these traits that were always there. It doesn't feel good, that's for sure.

Physically, I still get brain zaps, dizziness, tingling and burning sensations in my arms and legs, muscle twitching and nausea. My sleep is pretty terrible too, and I often wake up sweating.

These are all really common symptoms of withdrawal that many of us here have experienced, especially myself. This isn't you, it's your brain trying to process the drug. Just like when there's a virus or infection and your body raises its temperature to kill it, your body is trying to get this foreign substance out.

It absolutely does go away in time, just like fevers. You just have to go through it and accept that it's going to suck for a bit while your body recovers naturally. A "window" is a period of time where your symptoms seem to disappear and you feel "normal." You mentioned relief in the evenings which could be considered a window.

I'm going to leave the RI business to someone else but 1mg would be enough based on how these drugs hyperbolically affect our brain. For example, 1mg of Prozac occupies about 30% of the serotonin receptors in your brain. To get to 70%, you would need to reinstate 10mg. Basically, you get less bang for your buck the more drug you put into your system.

I personally wouldn't reinstate, especially at a 6/10. However, it is ultimately up to you to decide. And don't go for a stimmie/non-stimmie either. I've been diagnosed with ADHD my whole life and frankly I think it's just a ******** diagnosis.

14 minutes ago, Saffron said:

@Chippy I'd probably rate my symptoms at around 6/10 overall, although some days are definitely worse than others.

Thanks for letting us know, so things are moderately bad, so not nice for you for sure. The fluctuations are common. On balance has things gotten better over time?

16 minutes ago, Saffron said:

I've developed quite bad agoraphobia, which I've never experienced before. Going out feels overwhelming, especially being around lots of people or in busy places. Everything feels kind of distorted. I've started avoiding going out unless I absolutely have to, which is really affecting my life.

I also feel kind of restless, and not focussed, so I can't watch TV for long or even read much. I am figetting a lot and bouncing my knees. Again, this is one of those things where I can't tell if its me or not. I don't recall having this previously but maybe the diagnosis has made me hyperaware of these traits that were always there. It doesn't feel good, that's for sure.

Physically, I still get brain zaps, dizziness, tingling and burning sensations in my arms and legs, muscle twitching and nausea. My sleep is pretty terrible too, and I often wake up sweating.

These are all very common WD symptoms unfortunately. I am sorry you are suffering.

The RI window is typically considered to be around 3 months. Although we have seen some RI much later than this with success. The longer you leave it the more risky. I must add that it can make things worse, it can do nothing and it can help. The lower dose mitigates this risk, and as I have said higher doses tend to cause folk a lot of trouble.

22 minutes ago, Saffron said:

So if I take just like 1mg Fluoxetine will that even be enough? How do I get that tiny dose? Do I tip the capsule into water?

You need to weigh up your symptom severity with the risks of RI the drug, it's a choice only you can make.

If you decide to RI we can confirm the dose we think you should start on. As I said perhaps 1mg but tbc

Then yes you can put the contents of your capsule into water and create a DIY liquid.

We can help with the technicals, once you have made this choice and gotten your capsules, you will need to get a few items such as syringes, again we can help advise with this.

Here is our topic on making up DIY liquids. Preparing Doses for Tapering - Weighing & DIY Liquids

@Saffron

I'm really sorry you're going through this, especially at such a young age. I'm an NHS psychiatrist but I'm also going through protracted withdrawal myself, so I know just how awful it can be.

What you're describing sounds very much like antidepressant withdrawal to me. Brain zaps, derealisation, sensory disturbances, insomnia and that horrible jittery anxiety are all recognised withdrawal symptoms. Fluoxetine has a long half-life, but that doesn't mean withdrawal can't still be happening months after stopping it. Sorry your psychiatrist didn't believe you, that is quite typical. I certainly wouldn't assume your depression has returned, particularly when you were doing well before stopping and are now experiencing symptoms you've never had before.

I'd be VERY cautious about starting stimulants while you're feeling like this. I had a very strong reaction to stimulant medication myself, with brain fog, severe depression, suicidal ideation, jaw clenching, worsening anxiety, insomnia and tics. It was absolutely horrendous. Obviously everyone reacts differently, but stimulants can be quite activating, and I'd be concerned about potentially making an already difficult situation worse. The fact that a drug has a short half-life doesn't necessarily mean its effects will be short-lived either.

As for reinstatement, it can sometimes help, particularly if it's done soon after stopping. But at 3 months, things are much less predictable. Some people improve, some don't, and others report worsening symptoms. Unfortunately, there isn't much good research to guide us. Please read some accounts of people who have tried reinstatement on the sub to try and help guide you.

One of the things that's shocked me most about my own experience is how little I understood about protracted withdrawal despite being a psychiatrist. I had no idea symptoms could be this severe or last this long.

I wish I could offer you something more reassuring, but please don't assume that because you're still struggling at three months, you're going to be stuck like this forever. I really hope you start to see some improvement soon.

Thanks @Sminismoni that was really helpful. Always love your input. Xxx