Hello everyone, 

 

Firstly, thank you to Chippy and Luke for getting this up and running. It’s also nice to see a few of the old SA members here. I’m sure it will soon feel like home again. 
 

Back in February 2024 I was struggling with pressures at work and in my personal life. I was prescribed 15mg Mirtazapine, it was awful. Even worse anxiety and very vivid and gory visions. I stopped after 4 tablets. I went back to my GP and they prescribed 50mg of Sertraline. The morning of the first tablet felt reasonable, that afternoon was awful. I tried to push on and managed 7 tablets. After 7 tablet I was broken, it was a frightening experience. Intense anxiety, less than 2 hours sleep per night, bruxism severe enough that I lost a crown on a front tooth and a feeling of pure adrenaline running through me that was incredible, it was worse on my chest. I couldn’t eat, was drinking meal plans and neither me nor my friends knew what to do. My GP dismissed it as a return of neurological symptoms and offered me an antihistamine! 
 

I slowly started to recover and was feeling more myself in August when I decided to start taking cod liver oil capsules again. After 3 days I felt as if electricity was flowing through me. I didn’t initially link the symptoms to the supplement. After 6 days I stopped the supplement but was in a terrible way, it was just like electricity flowing through me, particularly through my upper back and shoulders. I was acutely ill and sleeping 1 hour per night. I’m not embarrassed to say I was genuinely frightened. 
 

My friends and I decided to call The Priory hospital, they are supposed to be the pinnacle of mental health in the UK, how wrong I was! I explained my adverse reaction to the consultant and they put me on Diazepam and Zopiclone which initially helped.  However, after 3 weeks I tried to taper from 12.5mg at a rate of 2.5mg every 5 days, as instructed. 
All hell broke loose! The electricity was back and even worse if that was even possible, accompanied by very little sleep and bruxism. 
 

I returned to the hospital begging for help, I was in tears, absolutely broken. 
They held me at 10mg for 6 days as I had to attend my brothers funeral. I was obviously escorted there and back. I was then tapered from 10mg to 0mg in 6 days. What followed was a lot of gaslighting when I met with the consultant to discuss my evolving symptoms, I was told it was health anxiety. At this point I knew I had to discharge myself and take my chances at home. I left the day after my last does of 3.75mg Zopiclone. Once home I would say I was acutely ill for 8 to 9 months with too many symptoms to list, maybe 30 in total. 
 

I’ve now been drug free for 16 months and am definitely far better than 6 months ago. The symptoms I still suffer are restricted sleep, 4 hours is a good night, I’ve yet to achieve 5 hours. Burning sensations on my legs and back, this is more like a mild sunburn now. Tinnitus in both ears. Ruminating thoughts, spells of anxiety and involuntary twitching on my right hand. I also suffer from having no positive emotions which I really struggle with at times. 
 

I’ve been very lucky to be supported through the worst of it by 3 incredible friends. I live alone and really don’t know if I would have made it through those acute months without them. 

 

Here is my thread on SA;

Hey mate!

 

Welcome to the forum. It's very very good to see you here! 🙂

 

Thank you for a fantastic intro post. VERY well written really sums it up.

 

Yours is for me a very acute case of what a lot of us suffer from. There is a general population in the WD community who have been on meds for years, multiple types, switches etc and eventually need to come off and then have long tapers fighting their symptoms on the way down. But what I see so much of is the ADRs. I really don't think our bodies are supposed to have this stuff put in them.

Many of us simply can't cope with them and then an onslaught of intervention from doctors (who don't get the harms that can be caused by meds) giving us more meds to cure incorrect diagnosis. It's heart breaking it really is.

 

As you know I've watched you improve over time and it's a great joy to see how far you have come. Im always impressed by the support you get from your 3 three best friends. Although I know you have some healing to do and things are really tough still it's great to see the progress. 🙂

 

Lots more to come and I look forward to hearing all about it

 

Chippy

Hey Chippy, 

 

Thanks for the warm welcome. Yes you’re right, I think they now like to label those who suffer ADR’s as chemically sensitive! 
 

I knew things weren’t right, especially once I started the Sertraline, I just didn’t have the knowledge at the time to advocate for myself. I honestly thought The Priory would get things right, unfortunately they treated the symptoms and not the cause. It just shows, if they get it wrong, we have little hope with an average GP. Hopefully the tide is slowly turning now. 

6 minutes ago, NBJ71 said:

I think they now like to label those who suffer ADR’s as chemically sensitive! 

This is awful! I think we are all 'chemically sensitive'. Personally I feel its a matter of time for most before things go wrong.

 

7 minutes ago, NBJ71 said:

I just didn’t have the knowledge at the time to advocate for myself.

So hard when you don't know what's happened. I was told it wasn't possible to have 'discontinuation syndrome' and I should see the nurse! I knew this was wrong immediately too.

 

8 minutes ago, NBJ71 said:

Hopefully the tide is slowly turning now

I think it is. VERY slowly. Just alot more good work to be done. Be nice to be a part of that somehow.

It sounds like you really went through hell - and without the support that the system was supposed to provide. 

 

I was on Sertaline for 6 months and had muscle tension, burning pain, tingling and dry moth during and still now, 6 months later. These drugs are much more invasive and powerful than is generally accepted. 

 

I hope you'll continue to improve! Take care!

Hi @Tumultarisk

 

Thanks for dropping by, to be honest it’s been brutal. These drugs are incredibly powerful. They may help some people but can be incredibly damaging for others, you certainly run the gauntlet when you start them. 
 

Do sorry to hear about your issues with Sertraline, I hope you keep improving! 

Thank you for joining, I hope that this places provides you with good support, and that ultimately you are able to write a success story here.

 

22 hours ago, NBJ71 said:

My friends and I decided to call The Priory hospital, they are supposed to be the pinnacle of mental health in the UK, how wrong I was!

 

Unfortunately, even the expensive, private practitioners who market themselves as experts are still just using trial and error and seeing how people react to various drugs. If it goes wrong, they do not know what to do. If you're nobility, you have access to better legal representation than most of us:

Rapid withdrawal and misprescribing of a benzodiazepine leads to £1.35m settlement for Luke Montagu, CEP co-founder -

 

I wonder what happened to other patients who are not nobility, or who were harmed by the NHS such as myself. They're simply invisible.

 

You sound like a kook if you say that the experts don't know what to do at all when people are harmed. From the website of the RCPsych which is the authoritative professional body overseeing psychiatry and training psychiatrists in the UK:

 

"Other people can have more severe symptoms which last much longer (sometimes months or more than a year). At the moment we cannot predict who will get the more serious withdrawal symptoms."

 

Stopping antidepressants

 

22 hours ago, NBJ71 said:

I’ve now been drug free for 16 months and am definitely far better than 6 months ago.

 

That's good. Often healing from these drugs is not overnight, and is not linear, as I'm sure you know from SA.

 

However, if you can notice steady progress over time looking back for a period, that is progress. My hope would be that in another 6 months, you are definitely better than today.

Hi @Luke

 

Thanks for the welcome, I’m glad to be here. 
 

I strongly believe that after my adverse reactions to antidepressants The Priory treated my symptoms and not the cause, that led to me being polydrugged and just pouring fuel in the fire. 
 

I told them I’d had an adverse reaction and yet they continued, that clearly shows they have no knowledge of dealing with these issues. 
 

I’m midway through my complaint with them, I’ve been offered a small fee as a “goodwill gesture” and an apology. I think I’ll ignore this offer and escalate to level 2. It’s never been about the money, it’s all about shaking the tree and raising awareness in some small way. 

A couple of things:

• Please make a yellow card report to the MHRA listing your symptoms. They are looking antidepressants but do not get a large enough volume of reports of adverse reactions: Yellow Card | Making medicines and medical devices safer
• If you'd like to shake the tree and raise awareness further, you could consider meeting with your local MP. Mine is helping me with this. More would be better.

 

Everything I've seen and heard from others, and everything that I have experienced in person indicates that the overwhelming majority of practitioners just look at symptoms and adjust drug doses or throw new drugs at them to see what happens.

 

One of the top psychiatrists in my county, who cost a fortune, suggested I straight switch Mirtazapine for an antidepressant, an antipsychotic and ADHD medication, all because Mirtazapine was causing me severe symptoms. The new antidepressant would be hopefully less physical symptoms, the ADHD medication was because I struggled to concentrate due to the Mirtazapine, and the antipsychotic was to help me "not overthink side effects anymore".

 

When I expressed alarm at this and asked how he'd come to that conclusion, he literally shrugged and said "trial and error".

 

I'm glad I did not follow his advice, it was extremely dangerous.

Hi @Luke

 

Ive already completed the yellow card. I will definitely consider speaking to my MP. First I need to work through my complaint with The Priory, then I can take the outcome to my MP. Plus, I’m still struggling and don’t want to overload myself as my cognition is still not what it should be. 
 

I agree, most prescribers have no idea what they are doing with these medications, it’s a huge amount of guess work. These drugs are certainly not the panacea that the vast majority of the general public believe them to be. 

Edited January 27Jan 27 by NBJ71

22 hours ago, NBJ71 said:

Hi @Luke

 

Ive already completed the yellow card. I will definitely consider speaking to my MP. First I need to work through my complaint with The Priory, then I can take the outcome to my MP. Plus, I’m still struggling and don’t want to overload myself as my cognition is still not what it should be. 
 

I agree, most prescribers have no idea what they are doing with these medications, it’s a huge amount of guess work. These drugs are certainly not the panacea that the vast majority of the general public believe them to be. 

 

Great. One thing that the MHRA indicated when I met them, was that they get people filling out yellow cards early on, but updates down the line are also very helpful as that allows them to quantify people having protracted recoveries and experiencing symptoms for a long time.

 

No pressure, but perhaps periodically, say every 6 months of whatever, it's worth just sending them a short email with your case number and saying "I'm still having XYZ symptoms" or whatever you want briefly.

 

I have done this since meeting them, as my yellow card was a few months out from getting very sick.

 

Of course, with your MP, only do what you are capable of. Your recovery comes first. I'm just highlighting that it's an option if you wish to make your voice heard.

 

  

22 hours ago, NBJ71 said:

I agree, most prescribers have no idea what they are doing with these medications, it’s a huge amount of guess work. These drugs are certainly not the panacea that the vast majority of the general public believe them to be. 

 

Naturally this forum and other similar spaces skews towards negative experiences, but what I would say is that the extent to which I have suffered would get these drugs banned if I could make everyone in the world experience a week of it.

A little update. 
 

This is probably my first positive update in over 16 months. I appear to of come out of this recent wave in better shape than I went into it. 
 

The tremors in my face and hands have reduced, burning in my back and thighs is now tolerable, like a mild sunburn. The anxiety is now tolerable and the numbing on the right side of my face is also much reduced. Tinnitus is still there in both ears, it’s at its worst in the mornings and evenings. The involuntary twitching of fingers and tendons in my right hand have also reduced. Brain fog and ruminating are at a point where I’m thinking clearer than at any point in the last 16 months. 

The two most important factors are that last night I slept for 5 hours straight for the first time in over 18 months and the emotional anaesthesia is easing, I now have a little enthusiasm for my life and the grey cloud of sadness seems to be lifting. 
 

I actually had maybe an hour on Thursday where the brain fog and ruminating stopped completely, it felt almost euphoric. The old me is definitely still there, I’ve missed him!  This is the best I’ve felt since I took that first Mirtazapine tablet almost 2 years ago, I don’t want to jinx myself but I’m starting to feel that I may of just turned the corner of this horrendous journey!
 

Thinking of all of you who are struggling today. Just keep going, day by day. We will all get through this eventually. 

Edited February 1Feb 1 by NBJ71

12 minutes ago, NBJ71 said:

A little update. 
 

This is probably my first positive update in over 16 months. I appear to of come out of this recent wave in better shape than I went into it. 
 

The tremors in my face and hands have reduced, burning in my back and thighs is now tolerable, like a mild sunburn. The anxiety is now tolerable and the numbing on the right side of my face is also much reduced. Tinnitus is still there in both ears, it’s at its worst in the mornings and evenings. The involuntary twitching of fingers and tendons in my right hand have also reduced. Brain fog and ruminating are at a point where I’m thinking clearer than at any point in the last 16 months. 

The two most important factors are that last night I slept for 5 hours straight for the first time in over 18 months and the emotional anaesthesia is easing, I now have a little enthusiasm for my life and the grey cloud of sadness seems to be lifting. 
 

I actually had maybe an hour on Thursday where the brain fog and ruminating stopped completely, it felt almost euphoric. The old me is definitely still there, I’ve missed him!  This is the best I’ve felt since I took that first Mirtazapine tablet almost 2 years ago, I don’t want to jinx myself but I’m starting to feel that I may of just turned the corner of this horrendous journey!
 

Thinking of all of you who are struggling today. Just keep going, day by day. We will all get through this eventually. 

Mate

 

All I can say is this is fantastic news!

 

Im so pleased to see this update. You do appear to have turned quite a quick corner all of a sudden. I was hoping you would.

 

It may be that the waves and windows keep on rolling as is often seen, but I hope and suspect that the waves will be less severe and windows clearer.

 

Here's to more of the same in the coming weeks!

 

Chippy

@Chippy

 

Thanks mate. 
 

I’ve got no explanation for it, I went into the wave at maybe 40-50% healed. I’ve come out of it at possibly 60-70% healed. I haven’t changed anything, I just stuck to the same foods, walking each day, etc. 

 

Im sure there are many more bumps in the road to come but I’m far more hopeful now mate. 

3 minutes ago, NBJ71 said:

@Chippy

 

Thanks mate. 
 

I’ve got no explanation for it, I went into the wave at maybe 40-50% healed. I’ve come out of it at possibly 60-70% healed. I haven’t changed anything, I just stuck to the same foods, walking each day, etc. 

 

Im sure there are many more bumps in the road to come but I’m far more hopeful now mate. 

Im so pleased. thats huge.

 

I think we know that is always possible or even likely perhaps but this is a clear sign of an upward trajectory of healing!

2 hours ago, NBJ71 said:

This is probably my first positive update in over 16 months. I appear to of come out of this recent wave in better shape than I went into it. 
 

The tremors in my face and hands have reduced, burning in my back and thighs is now tolerable, like a mild sunburn. The anxiety is now tolerable and the numbing on the right side of my face is also much reduced. Tinnitus is still there in both ears, it’s at its worst in the mornings and evenings. The involuntary twitching of fingers and tendons in my right hand have also reduced. Brain fog and ruminating are at a point where I’m thinking clearer than at any point in the last 16 months. 

The two most important factors are that last night I slept for 5 hours straight for the first time in over 18 months and the emotional anaesthesia is easing, I now have a little enthusiasm for my life and the grey cloud of sadness seems to be lifting. 
 

I actually had maybe an hour on Thursday where the brain fog and ruminating stopped completely, it felt almost euphoric. The old me is definitely still there, I’ve missed him!  This is the best I’ve felt since I took that first Mirtazapine tablet almost 2 years ago, I don’t want to jinx myself but I’m starting to feel that I may of just turned the corner of this horrendous journey!
 

This is wonderful, congratulations!! Keep us posted on your journey. I believe that many people here are happy for you.

 

 

Wishing you amazing progress!, Nemina 

@NBJ71 That is a positive update, I'm glad.

 

There may well be further bumps in the road, but your body is likely working towards getting back to "the old you", as you said.

 

Often with withdrawal, before being well all the time, our body manages to be somewhat well occasionally. This is a step on the road towards recovery. There's no telling how long the road will be, or how many bumps there might be in that road, but in my view this is a clear sign that you are on that road and moving forwards. If you move forwards enough, you will get there in the end.

 Hi thanks for commenting on my post I really appreciate it.

means a lot to me.

i wanted to come and read your story and can see your most recent positive update and I’m so pleased for you!

 

how long was your wave? 
This does sound like a corner tuner and it’s a common time from what I gather for a corner to be turned! That second year seems to hold some healing improvement for most (appreciate it’s not everyone’s experience.) 

 

I can see you had an ADR.

honestly that’s so so hard and I think I had one too, I had the Compazine injury and I’m convinced I had an ADR to Prozac just I was stupid  and stayed on it but I had pure terror for about 8 weeks, zero sleep and my mum had to come live with us I was totally none functional.

 

i have no idea why I stayed on the med, but Compazine gave me Akithaisa so I think it felt like Prozac was my only hope.  Anyway….the trauma of that I try to leave back in 2023!!! 🙄

i wish you lots on hope on your healing journey:

did anything help you in particular so far?

thanks

Rosie 🕊️ 

Hey @Its-me-Rosie

 

You’re more than welcome, I’m glad I could offer you some encouragement from my journey. 
 

I would say my longest and most brutal wave was the 3rd one, that lasted around 9-10 weeks and ended around the 9 month mark, it absolutely broke me. I’d say I was acutely ill for first 9 months.  This recent wave was my shortest at 2 weeks. I completely understand how you feel, going back into a wave can really knock your confidence, you just can’t see an end to it. However, every wave comes to an end and yours will too! 
 

I can say I’ve done anything to improve my situation, quite the opposite, I’ve just tried my best not to make it worse. I stopped all supplements, caffeine, alcohol etc. Started eating cleaner and made sure I pushed myself outside for a walk everyday. The walking wasn’t always possible in the early days. Even a 20 minute walk made me sweat profusely, that was bizarre considering I’d been running long distance before my ADR but my CNS just couldn’t cope with going any further.  As with anything in our situation, if I’ve added anything back to my life, it’s been one thing at a time and in a very slow and gradual manner. 
 

It’s sounds like they tried to treat your ADR to Compazine with Prozac which I’d imagine further damage your already destabilised CNS. That’s very similar to me, I had an ADR to an antidepressant and was treated with Diazepam and Zopiclone which made me so much worse! I was in a very similar state to you after my ADR. A friend came to stay with me as I just wasn’t coping. 
 

Just hang in there Rosie, you’re doing really well all things considered, things will seem much better once you’re through this wave. 
 

Take good care of yourself. 
 

Nick. 

Edited February 2Feb 2 by NBJ71

So sorry Nick, what has happened to us sucks!!

 

It sounds like you have made some slow and steady progress over recent months and that your last wave did indeed bring some healing.  I have read Baylissas books and she had some very intense waves far out that brought better baseline healing, we are all so so different in this journey, that what makes it so hard.

 

hoping for a window soon, day 12 of my wave apart from brief respite on Saturday.
My first 4 months were all constant wave….and since then my longest wave has been 3 weeks. I think I’m lucky to get windows, but every wave always feels like it will last forever.

 

well done for getting through your waves and thank you for the support, please keep us updated on any progress!

 

🌈🕊️🙏

 

 

Thanks Rosie, 

 

Just keep pushing forwards, this wave will pass eventually. Oh, and don’t beat yourself up for taking Prozac for 8 weeks. We’re all here because we trusted the medical professionals, if only we knew how ill informed most of them are! 
 

I’d say the fact that you’ve had windows already is a positive sign. I look forward to your update when this wave ends. Always here for a chat. 👍🏼

 

Take good care of yourself. 
 

Nick 

Hi @Nemina

 

Thank you so much for the kind words. It’s certainly been tough so far but I’m feeling much better at the moment. 
 

I hope you’re coping with your taper. It can be a long road but I’m sure it will be worth it for you! I’ll keep an eye out for your updates. 

You have done so well.... what a crazy ride. ❤️🙏

@LostinCanada

 

I never ever imagined that a few antidepressant tablets would have led to so much suffering! 16 months drug free and I think I’m through the worst of it now. Again, thank you for your encouragement, kindness and compassion in those early months. 🙏🏼 ❤️

5 minutes ago, NBJ71 said:

thank you for your encouragement, kindness and compassion in those early months. 🙏🏼 ❤️

I am so privileged that I could help. ❤️❤️❤️