LukeUK: Remeron/Mirtazapine Severe Withdrawal

[manymoretodays]

 

On 9/19/2023 at 10:05 AM, LukeUK said:

The main debilitating issues that I'm most concerned about are the severe fatigue and unwell feelings and the erectile dysfunction/libido issues. I could at least start trying to live a fulfilling life whilst I manage the other symptoms.

 

 

 

I am seeing a private endocrinologist in a couple of weeks, the aim of this would be to get a hormone and thyroid panel done, and anything else they deem worthwhile.

 

Hey there LukeUK.  And from your other post it sounds like your sleep is actually pretty darn good.  That's in your favor as far as further healing goes.

 

When you see the endocrinologist just go easy on feeling like you need to make decisions on trying any more drugs or hormones. Was the erectile dysfunction and low libido all after the mirtazapine, or did it begin while on it?

 

It's the worst, that so many, while good doctors otherwise, don't have time or exposure to drug harms and then what to do about them.  It's just sometimes adding in additional drugs or hormones could make things worse.  Have them go over the thyroid panel with you too.  Do you feel pretty well versed in thyroid issues?  We do have a topic here.  Many do take thyroid hormones for a valid hypothyroid condition.  And, I'm referring to the chance that they'll want you to try testosterone or something........right now, if it was me........at your stage of healing...........I would not do that.  I actually see signs on the side of busy well traveled roads here advertising testosterone and hormone treatments.  It's kind of weird these days. 

Topics:

Thyroid symptoms: hypothyroidism, Hashimoto's

Testosterone

PSSD Post-SSRI sexual dysfunction

And again, don't get too mired in symptoms or read so much that they get worse.  I think there is a ton of hope that you will turn around and improve more as time goes on, more Windows, and less intensity with Waves.

 

I would, if you are getting blood work done, have them check for anemia too, and your Vitamin D level.  My Vitamin D was low and so I've upped my intake of the bottled Vitamin and likely won't decrease it anymore in the sunny months.  I feel more energy and sleep is more solid since I've upped the dose.  It wasn't the worst case of feeling exhaustion and fatigue that I've had, and it was fairly short lived.........so maybe not as bad but it is better.

 

I'm feeling hesitant myself still, to offer or advise reinstatement.  Mainly as I'm not sure if it might make you even more fatigued feeling, as lower doses of mirtazapine can do.

Tips for tapering off mirtazapine(Remeron)

I'm not positive though that 0.5 or 1 mg, for a reinstatement dose, would have that potential.  It might help with WD symptoms, not add more symptoms.......and so I put your case up for review, in case anyone feels like it's worth a try.  The tips topic is good with information all about mirtazapine and it's properties.

 

Any improvements?  Any further security as far as your housing, and enough money to get by goes?  It is an added stressor, of course it is, if times get tougher for you. 

 

All for today.

L, P, H, and G,

mmt

 

 

 

 

Edited September 22, 2023 by manymoretodays
finished post

[LukeUK]

On 9/20/2023 at 11:38 AM, Antecedent said:

Please, don't lose hope. 

 

 

Thank you. I appreciate your kind words.

 

 

16 hours ago, manymoretodays said:

 

 

Hey there LukeUK.  And from your other post it sounds like your sleep is actually pretty darn good.  That's in your favor as far as further healing goes.

 

When you see the endocrinologist just go easy on feeling like you need to make decisions on trying any more drugs or hormones. Was the erectile dysfunction and low libido all after the mirtazapine, or did it begin while on it?

 

I get some sleep every night, it's just an unpleasant experience. 

 

Immediately upon taking the first dose I felt as though I'd become totally asexual and had erectile dysfunction. This improved slightly upon increasing from 15mg to 30mg, and then over time. During tapering, I felt pretty much normal and that's why I started to date. I believe that I had significantly reduced side effects as the dose lowered, but only suffered noticeable withdrawal after stopping completely. I have since read that the lowest doses are the most severe to withdraw from.

 

About two weeks into withdrawal, I had total numbness below the waist. That has gone. I have low libido and erectile dysfunction now. Before starting Mirtazapine I was probably at the very high end of normal in this regard.

 

I'm cautious with the endocrinologist, I want to see if anything is very obviously and significantly wrong as this has been so severe. In truth, I do not believe any doctors can help me.

 

 

16 hours ago, manymoretodays said:

It's just sometimes adding in additional drugs or hormones could make things worse.  Have them go over the thyroid panel with you too.  Do you feel pretty well versed in thyroid issues?  We do have a topic here.  Many do take thyroid hormones for a valid hypothyroid condition.  And, I'm referring to the chance that they'll want you to try testosterone or something........right now, if it was me........at your stage of healing...........I would not do that. 

 

I share your concerns. I want to check that nothing is hugely out of range. If my testosterone is a bit low but normalish I would be reluctant to do anything to further disrupt things. If I find out that prolactin or a different hormone is 3x the normal range then maybe that does warrant consideration. Likewise for thyroid function. I did have unnaturally rapid muscle wastage in the beginning, and have at times had skin peeling off in a very "hormonal" looking way.

 

Cialis seemed to affect my libido as well as physical functioning (when it worked, windows and waves as usual). It affects levels of E2 so I would like to get a full panel done to see if something very unusual is going on. I did have basic bloodwork done in acute withdrawal but it is limited. I will look into your suggestions regarding deficiencies.

 

Thank you for the links.

 

It is worth checking to see if any results are very alarming. I suspect that in reality it is my nervous system that is dysregulated. That has a knock-on effect on everything else.

 

16 hours ago, manymoretodays said:

I'm feeling hesitant myself still, to offer or advise reinstatement.  Mainly as I'm not sure if it might make you even more fatigued feeling, as lower doses of mirtazapine can do.

 

I think at this stage I just have to hope to recover naturally. I'm better than I was two months ago, at least on average. This far out it could take a while to stabilise and my hope is that during that "while" I would have more natural healing. I would welcome the thoughts of others on this though.

 

16 hours ago, manymoretodays said:

Any improvements?  Any further security as far as your housing, and enough money to get by goes?  It is an added stressor, of course it is, if times get tougher for you. 

 

I'm currently awaiting an insurance claim. I am insured against loss of income due to illness that would pay out 50% of my income. However, I have no formal diagnosis so I am concerned about whether or not the claim will be accepted. Aside from that I have savings and can last a while, for now.

 

I have gone back to my "middle" which is feeling tired all the time, sometimes moreso, and sometimes feeling more distinctly unwell but not as often. I sometimes struggle with cognitive impairment as well. I get out for walks every day that I can do.

 

I stopped taking Mirtazapine 5 months ago. I used it for 5 months.

 

Thank you. As always, your support is appreciated.

 

[manymoretodays]

LukeUK,  here's a: DSM Diagnosis code for Antidepressant Discontinuation Syndrome

I don't necessarily like the qualifiers on that one, but it is well worth sharing with one of your doctors to then use as a diagnosis.  AND, fortunate, that you are in the first year after your drug trial I think.

I know there are more diagnoses around drug harm that I believe the medical establishment and insurance companies will accept too.

So that is definitely something you might explore with your favorite, most open doctor.

 

 

[checco]

The worrying thing is that even if taken for a very short time these drugs leave devastating effects on the entire body in general comparable to someone like me who takes them for 25 years . Although I suspect that those who have employed them for a short time recover sooner by reading the success stories on this site, at least I had this impression.

[LukeUK]

On 9/22/2023 at 4:27 PM, manymoretodays said:

LukeUK,  here's a: DSM Diagnosis code for Antidepressant Discontinuation Syndrome

I don't necessarily like the qualifiers on that one, but it is well worth sharing with one of your doctors to then use as a diagnosis.  AND, fortunate, that you are in the first year after your drug trial I think.

I know there are more diagnoses around drug harm that I believe the medical establishment and insurance companies will accept too.

So that is definitely something you might explore with your favorite, most open doctor.

 

 

 

I have tried, many times. Unfortunately in the UK we have general doctors who then refer you to specialists. The waiting times for this can be huge, I have been referred to a neurologist who will assess whether or not it is a case they want to take. This could be a long time.

 

For reference, I got sick at the start of May and my endocrinology appointment is at the end of January (although I'm paying to see one privately soon).

 

My income protection insurance has denied my claim on the grounds of insufficient medical evidence. I now effectively have no income. My job is quite stressful and involves lots of problem-solving and thinking. It's fairly tricky when I'm on my A-game.

 

For now I will survive on savings and hope that I'm well enough to work before they run out. The insurance wouldn't have paid my full salary, but it would have allowed me to cover bills without haemorrhaging money. I was hoping at least to get this to help bridge the gap while I recover.

 

Short-term use of Mirtazapine is slowly destroying my entire life. I'm lucky to have family who can help me, I wouldn't have survived this long if I didn't, and that is not an exaggeration.

 

On 9/22/2023 at 5:09 PM, checco said:

The worrying thing is that even if taken for a very short time these drugs leave devastating effects on the entire body in general comparable to someone like me who takes them for 25 years . Although I suspect that those who have employed them for a short time recover sooner by reading the success stories on this site, at least I had this impression.

 

Yes. I have now been off Mirtazapine for the same length of time that I was on it. I have had some windows in the last week or so when I haven't felt as bad, but they are brief. I never feel 100% though, just not really exhausted, dry eyed and unwell feeling. They last for hours only.

 

It is a race against time to recover before I lose everything in my personal life. I have already lost a lot, even if I spontaneously fully recovered overnight tonight. 

 

 

I do feel as though my emotional range has improved somewhat, which is good. My main issue is just feeling exhausted, low energy, slightly unwell all the time.

[manymoretodays]

Hi LukeUK,

And oof, I hate to read that.......you are not being granted any insurance, sick pay.........not surprised however, just ughh!  I know you are tired of it all but I'd say keep trying, if you have any energy left.  Appeal the decision.  I wonder if any of the drug toxicity diagnostic codes would work or if you tried those.  And of course it would help if the prescribing doctor recognized that the mirtazapine has been responsible for your difficulties.   It did sound to me like adverse reactions came on from the drug, and then although you had some brief relief, they came on back again while still on the mirtazapine, brief relief, and then same symptoms while off of it.   

I'm sure hoping some improvement will arrive soon.

2 hours ago, LukeUK said:

I have had some windows in the last week or so when I haven't felt as bad, but they are brief. I never feel 100% though, just not really exhausted, dry eyed and unwell feeling. They last for hours only.

 

Again, this is good ^!!!!!!  As is what you posted below:

2 hours ago, LukeUK said:

I do feel as though my emotional range has improved somewhat, which is good. My main issue is just feeling exhausted, low energy, slightly unwell all the time.

2 hours ago, LukeUK said:

For now I will survive on savings and hope that I'm well enough to work before they run out.

 

Do you feel up to doing something less challenging for awhile?  For work I mean?  Or to bring in some income?

2 hours ago, LukeUK said:

Short-term use of Mirtazapine is slowly destroying my entire life. I'm lucky to have family who can help me, I wouldn't have survived this long if I didn't, and that is not an exaggeration.

 

And so I see you are coming up on a year in November then, since you started the mirtazapine until now.  I'm grateful you do have family who can help.  You've got to believe in healing LukeUK for it to grab hold and keep going.  I'll pass some of my own hard won faith in healing on to you now........grab it.  Work on some of the words you use.......I had to, use more hopeful words to yourself and in your writing.  Sounds a bit hokey, but it can help.

Who do you rely on for emotional support most?  Can you expand your support network?  Are you able to do some mindfulness meditation, or movements, to get you out of head space?  Doing some of that may help extend the Windows a bit.

 

I forget what I gave you, and so here is the link to a post with a whole lot of good non-drug coping in a list:

Non drug techniques to cope with emotional symptoms

Do you write, or play music?  You get to develop some new skills now which WILL help you get through until you are 100% again.  I believe you will heal LukeUK. 

 

Keep posting, and maybe you can find a uplifting online buddy to talk with?  Someone else who is waiting, healing......you know......

 

((((((LukeUK)))))))

 

L, P, H, and G,

mmt

[LukeUK]

On 9/28/2023 at 5:15 PM, manymoretodays said:

Hi LukeUK,

And oof, I hate to read that.......you are not being granted any insurance, sick pay.........not surprised however, just ughh!  I know you are tired of it all but I'd say keep trying, if you have any energy left.  Appeal the decision.  I wonder if any of the drug toxicity diagnostic codes would work or if you tried those.  And of course it would help if the prescribing doctor recognized that the mirtazapine has been responsible for your difficulties.   It did sound to me like adverse reactions came on from the drug, and then although you had some brief relief, they came on back again while still on the mirtazapine, brief relief, and then same symptoms while off of it.   

I'm sure hoping some improvement will arrive soon.

 

My employer has been really helpful (it is their insurance policy). I won't go into detail but I will now work on seeing more medical professionals and gathering more evidence for another attempt.

 

I was okay on the drug. Functional at least- I had tiredness, sexual dysfunction and heart palpitations/adrenaline rushes. I continued working, continued exercising almost every day. I wanted off because I had never wanted to be on medication, I just got desperate at a very difficult time, which had passed, and I was concerned about the above effects and didn't want to continue doing damage. Also, I was lonely, and wanted to be able to have a relationship. All side effects reduced very quickly during tapering (which lulled me into a false sense of security), and then a week after 0mg I fell severely ill and got all of the side effects back, but far more severely, plus a lot of additional effects.

 

I know now that a 4-5 week taper after 4 months of use was too fast. I didn't know anything about withdrawal and was prepared to feel weird emotionally for a bit.

 

I do feel as though I have been unusually unlucky. More than 5 months off of 5 months total use (including taper) I am still physically pretty unwell most of the time.

 

On 9/28/2023 at 5:15 PM, manymoretodays said:

Do you feel up to doing something less challenging for awhile?  For work I mean?  Or to bring in some income?

 

No, definitely not. At more than 5 months off the drug, I have days where I can function but still feel pretty bad, and many days where I have a similar level of functioning to someone with severe flu- extremely low energy, can't think clearly, can just about drag myself around to get water and snacks, can barely focus on watching tv etc. I attempted to do my job part time, remotely, and it was just too much.

 

I also think it would invalidate my insurance claim. My best bet for now is to survive until the outcome of that is clear.

 

On 9/28/2023 at 5:15 PM, manymoretodays said:

And so I see you are coming up on a year in November then, since you started the mirtazapine until now.  I'm grateful you do have family who can help.  You've got to believe in healing LukeUK for it to grab hold and keep going.  I'll pass some of my own hard won faith in healing on to you now........grab it.  Work on some of the words you use.......I had to, use more hopeful words to yourself and in your writing.  Sounds a bit hokey, but it can help.

Who do you rely on for emotional support most?  Can you expand your support network?  Are you able to do some mindfulness meditation, or movements, to get you out of head space?  Doing some of that may help extend the Windows a bit.

 

Thank you. I have occasional calls with friends, but they are all far away (geographically) from here. For now, I pretty much have my family.

 

I drag myself out for a daily walk now, some days it isn't difficult, some days it is. Some days I have even done "strenuous" ones uphill etc. I am really trying to build my physical health back up.

 

On 9/28/2023 at 5:15 PM, manymoretodays said:

I forget what I gave you, and so here is the link to a post with a whole lot of good non-drug coping in a list:

Non drug techniques to cope with emotional symptoms

Do you write, or play music?  You get to develop some new skills now which WILL help you get through until you are 100% again.  I believe you will heal LukeUK. 

 

Keep posting, and maybe you can find a uplifting online buddy to talk with?  Someone else who is waiting, healing......you know......

 

I have a book/story that I have wanted to write for a couple of years. I have thought about picking that up but I'm very unwell and it is often difficult to do "passive" things like watch TV. Only during the better times is that not too strenuous.

 

I'm in touch with the member who posted earlier who recovered from a very similar experience to mine on Mirtazapine. That provides some hope.

 

 

I am seeing an endocrinologist today. I believe that my endocrine system, my histamine system or both are destabilised. I agree with our previous discussions in that caution is needed to prevent further destabilisation.

 

Mirtazapine is a potent anti-histamine. I still have:

irritated eyes on and off

sleep/wake issues and fatigue

libido issues and erectile dysfunction (histamine plays a role in these too)

I still sneeze quite regularly and have dry skin issues, neither as badly as a few months ago

 

Equally, testing confirmed high cortisol (mirtazapine suppresses cortisol according to studies), and both on and off the drug I've had several issues with a racing heartbeat (can also be histamine-related), adrenaline rushes etc. Low libido and my HUGE weightloss in early WD plus the fatigue etc. can also be hormonal/thyroid etc. issues.

 

Hopefully seeing an endocrinologist starts ruling some of these things out, or will identify anything that could be majorly wrong.

 

In truth, I think that the only cure is time. I think all of my symptoms are due to my brain and CNS not working correctly. I think that my histamine system is playing up because the histamine receptors in my brain have been disrupted, likewise I believe my endocrine system is playing up because it is getting erratic inputs from my brain/CNS. Unless something is WAY out of line I would be nervous about introducing further treatments.

 

 

I am totally heartbroken over this, to put it mildly. I should never have tried psychiatric drugs, and I did not need them. I have been severely physically ill along with severe mental symptoms. The mental symptoms seem to have passed (for now), but my physical health remains terrible and most days consist of waiting for them to be over whilst suffering, only to do it again.

 

I had no physical problems at all, just a difficult time in my life, and short-term use has left me in this state. I cannot do anything I enjoy, I can barely enjoy anything because I feel awful most of the time (despite trying very hard to do so). Most of the time my energy levels and physical wellbeing are roughly equivalent to someone with the flu, after more than 5 months of improvement. Even if I physically recover, it will take a very long time, and relationships and ever having a family etc. may be impossible. I may well be recovering just to lead an empty and lonely life. All because I asked a doctor for help.

 

I was prescribed this drug in a 3 minute phonecall. That's all it took.

 

 

[Faure]

1 hour ago, LukeUK said:

Some days I have even done "strenuous" ones uphill etc.

Hi Luke, I’m so sorry to hear more about your situation. What has happened to you (and me and everyone else here) is just appalling. And the awful thing is it happens to others all the time. Some without the support of family. Do print out and take the guidance from the royal college of psychiatrists which highlights the need for slow tapering. You can use it to add weight to your case. Have you seen the Panorama programme about it as well? Worth a watch and a mention to health professionals (watch it when you’re having a good day). Also Medicating Normal is a very useful film (again not one to watch on a bad day). 
 

I quoted the above sentence to draw your attention to the fact that strenuous exercise during WD can exacerbate symptoms and cause waves, so it’s best to keep any exercise very gentle. 
 

Try not to lose hope. People are recovering from WD and going on to lead full lives. Unfortunately it takes a long time and is very painful and when we’re in the midst of it it seems like we will never get there, but we will. I hope you have a good day today. 

[LukeUK]

17 minutes ago, Faure said:

Hi Luke, I’m so sorry to hear more about your situation. What has happened to you (and me and everyone else here) is just appalling. And the awful thing is it happens to others all the time. Some without the support of family. Do print out and take the guidance from the royal college of psychiatrists which highlights the need for slow tapering. You can use it to add weight to your case. Have you seen the Panorama programme about it as well? Worth a watch and a mention to health professionals (watch it when you’re having a good day). Also Medicating Normal is a very useful film (again not one to watch on a bad day). 

 

Thank you. The doctors are aware of the panorama documentary, they admit now that Mirtazapine could have caused this, but do not know what to do. I am also aware of it but haven't watched it.

 

I've now been referred to neurology, but they may or may not decide to reject it, and even if they agree to it, the waiting lists are huge. I also got referred to endocrinology but I'm spending my own money (lots of it) to do that privately as the wait for that was many, many months.

 

If I hadn't got my family I may well have died. For a long time I was far too disabled to feed and water myself. I would struggle very hard to do so even now if I had to live alone. I know that I am lucky to have that support, but also do not want to be a burden. It's not just my life that is interrupted.

 

 

17 minutes ago, Faure said:

I quoted the above sentence to draw your attention to the fact that strenuous exercise during WD can exacerbate symptoms and cause waves, so it’s best to keep any exercise very gentle. 

 

Yes, I'm aware of this. I highlighted it in air quotes, it is just more walking but for longer or with some uphill sections. I went for a normal walk today and really, really struggled due to exhaustion, dizziness, headache etc. I haven't noticed any correlation between doing more or less. Every day is a constantly shifting set of feelings and symptoms, with one constant- fatigue and unwellness. Sometimes a little less, sometimes much more.

 

 

17 minutes ago, Faure said:

Try not to lose hope. People are recovering from WD and going on to lead full lives. Unfortunately it takes a long time and is very painful and when we’re in the midst of it it seems like we will never get there, but we will. I hope you have a good day today. 

 

Yes, some people do recover. Others do not fully recover. There are plenty of people on multi-year journeys who have improved a bit but not fully. I am trying not to lose hope, but every day is constant suffering, and the night times aren't much better. Even if the suffering reduces over a long period of time, I may have PSSD for the long term. I just have to wait and hope.

 

I have been off medication for longer than I was on it. I might be a lot better in 2 months, or I might be partially better in two years. I don't want to get better and have PSSD, that is not a life worth living. I lived that way on the medication and hated it, and I am potentially a very long time from even reaching that level of living.

 

Mirtazapine caused damage from day 1. I then tapered it far too quickly (unknowingly). The level of dysregulation I have unwittingly subjected my body to is huge, I think it is too late to reinstate without significant risk of further damage.

 

I realise that this sounds negative, but it is the reality of the situation. I do hope to heal. My heart breaks reading all of the stories of others here. Many here have had a hard time, others have been subjected to things that are truly inhumane. I wish you full recovery, and happiness.

 

 

[LukeUK]

I have recently had some windows where I feel better for a while.

 

However, I am still not out of the woods, and the waves are rough. Anxiety, which has mostly been absent for months has returned very strongly, and it feels very "physical". I wake up with an intense adrenaline rush that never fully subsides. This has coincided with being a lot more tired.

 

My sleep has been improving steadily, less nightmares and more sleep, and I have been able to do more. Other than having bouts of feeling very tired and sleep deprived my physical health has improved.

 

I am encouraged by the improvements that I've had, but it is still very tough. I think that being exhausted all the time is very debilitating. The better days are ones on which I have the energy to do things to distract myself.

 

The endocrinologist thought that the rapid weight loss I had in the initial weeks of withdrawal is very likely to have disrupted thyroid function and hormone production. It is likely that ontop of withdrawals disrupting my CNS my hormones have also been all over the place.

 

I am finally having some blood tests on the 3rd of November to look at this. I think that my hormones are settling down though, given that I have had improvements in the last few weeks I would be nervous about disrupting the process. It is good to do the tests and see though.

 

Managing my mental health through all of this is very challenging, as I am sure it is for others. I really want to just be free of this, free of the exhaustion, the worrying about my health, the physical anxiety. I want to be who I was before the drug. Hopefully more time will bring this.

 

[LukeUK]

The problem is I'm just over 6 months off and I'm still suffering badly other than the window I had. I didn't feel great but was at least able to do things like prepare food, go for nicer walks and do some of my hobbies. 

 

My heart is now doing all kinds of weird things, I get out of breath just getting up to use the bathroom, I feel horrible all day and can again do nothing other than sit in a chair all day and suffer, which is what I've been doing for months. 

 

I'm still unable to work, and unable to care for myself.

 

I have never had any health issues before taking this drug for only 5 months, and they worsened to this point after stopping 6 months ago. I have not read many examples of people being this physically incapacitated for this long with such short usage. Doctors suspect an endocrine or metabolic issue triggered by the weight loss and/or withdrawal.

 

I hope for more windows but I'm trying to mentally and financially prepare myself for what is essentially chronic illness at this point.

[manymoretodays]

On 10/27/2023 at 2:15 AM, LukeUK said:

I have not read many examples of people being this physically incapacitated for this long with such short usage

 

Oh LukeUK.  In my time moderating here, and even before.........I did see some with similar.

Try not to go with acceptance of chronic illness.  I mean accept what's going on now.  But believe in healing and recovery.  Or try to.

I'm so sorry.

 

Do let us know if anything comes up with your endocrinologist visits and labs.  I've honestly never seen anyone come up with positive results for another illness, while moderating.

 

And happy you've found hope in another's story, and communicating with them.

 

In my prayers LukeUK.

 

L, P, H, and G,

mmt

[LukeUK]

I'm having days that aren't as bad, and days which are very tough.

 

It has been confirmed that my thyroid is misbehaving, I am convinced this is a result of mirtazapine given that it does act on your thyroid.

 

I still struggle a lot with tiredness. Sometimes it is worse than others. Low moods and anxiety also on and off, often coinciding with the exhaustion. My adrenal system is not right, sometimes I'm alright and sometimes my heart is playing up, I'm exhausted but wired and all sorts.

 

I am very sensitive to staying up slightly late, more than a little bit of coffee, not being hydrated, anything that would make a healthy person feel slightly less than great really hits me hard. I am, going to take serious efforts to keep ontop of these things but it is difficult.

 

My main symptoms now:

-Fatigue which fluctuates

-Malaise and feeling unwell which fluctuates

-Heart issues like fast heart rate on and off

-Anxiety and sadness on and off

-Partial sexual dysfunction

-Allergy type symptoms but much less frequently

-Wake up very early but do now sleep through (must be disciplined about early bedtimes)

 

Overall I'm better than I was, for sure. On the better days I am able to do things, and have been looking after myself.

 

This is a very, very hard fight and very lonely. I stopped mirtazapine 7 months ago within the coming days. It has totally devastated life as I knew it and I'm not out of the woods yet. As always, fatigue has been the most difficult for me as it is debilitating compared to everything else. I'm still not back at work, I had a week in late October where I couldn't get out of a chair nor look after myself at all. It makes me feel very vulnerable.

 

I hope that I can be improved significantly from here in another month or two. This drug has eaten a year of my life now, and things weren't going great before that, which is why I took it in the first place.

 

My heart goes out to everybody else who is struggling.

 

 

 

 

[LukeUK]

Deteriorated to the point of ending up in hospital a few days ago. I couldn't get up, randomly passed out and had a racing heart. Exhausted and barely able to move again. They took blood for tests, mainly repeats of things done in the past but I was too ill to understand much. I doubt they'll find anything, it is drug- induced harm and not an active disease.

 

I stopped taking drugs 7 months ago after short term use and I'm still non functional and reliant on the care of others. The only dignity I manage to keep with difficulty is going to the toilet by myself. 

 

I spent months building myself up, trying to walk outside even when it was hard, avoiding caffiene, alcohol, eating healthy.

 

It's totally inhumane. My quality of life is worse than zero. Every night I dread the following day which is barely moving, suffering, being a burden on others knowing that life as I knew it gets further in the rear view mirror.

 

I have lost most of my friends, relationships are unlikely to be possible, my career is slipping away, my home is at risk.

 

I had brief Windows where I wasn't great, nor even good. Just not this bad and I was able to push through and do things. It is totally ridiculous how ill I am at this stage and even if I start to feel better that isn't even necessarily a good sign, it's just an up on the rollercoaster before the drop.

 

Maybe I'll heal in time. Maybe not.

[LukeUK]

Another month.

 

My main symptoms now:

-Brain fog which fluctuates (this was a problem a month ago as well, I just forgot it)

-Fatigue which fluctuates

-Malaise and feeling unwell which fluctuates. Often feel hungover in the mornings and get very tired early in the evening

-Depression and anger (although this could be said to be totally normal)

-Partial sexual dysfunction

-Poor and unrefreshing sleep, nightmares

 

My heart issues seem to have cleared up after peaking a month ago, my cortisol is in range now, perhaps that is related. It has taken weeks to recover from that crash, but I am able to go for walks most days again. Other than that, my quality of life is still poor. Every day is exhaustion and being unwell.

 

Outside of how I feel physically, I cannot work, I cannot have a relationship, I have lost touch with the vast majority of my friends, I cannot exercise beyond walking (when I can do that), I cannot do anything I used to enjoy, I cannot even always do distracting things as sometimes reading or looking at a screen is too much. The savings I set aside for hopefully having a family one day are being depleted by this instead to try to keep my house. I was fit, healthy and in excellent physical shape as a result of years of hard work and was training to compete in strength competitions until my muscle mass dropped off my body in 3 weeks. I'm now sick in all of my dreams at night. Even if I recover, I've lost everything worth recovering for and then have to totally rebuild a life.

 

I took this medication after an extremely difficult year and being incredibly lonely while dealing with a lot. This drug has now caused loneliness to be permanent or long term. It isn't even vaguely an exaggeration to say my life has been ruined. I have had an experience very similar to those with severe long covid except without the treatment, disability insurance, sympathy. I cannot relate to most of the stories on here other than the most severe. I wasn't polydrugged, I wasn't a long-term user, I have no co-morbid health conditions. Overnight it's like someone went onto a computer and where it said health = 1 they changed it to health = 0.

 

This experience is deeply traumatising. I hope that gradually more symptoms subside.

 

 

 

 

[getofflex]

@LukeUKI feel sad to read your words, and my heart goes out to you.  I'm sending you thoughts of caring and warmth.  Unfortunately, I relate to nearly all of what you said - this made my life a shambles as well.  

 

I just want to reassure you that you are only 8 months off the drugs.  There is so much hope for you.  I know it is extremely difficult to feel hopeful, when you feel so badly, and all that makes life worth living is taken away from you.  It is a very difficult and traumatizing experience.  However, I truly believe that as time goes on, with proper self care, you will very gradually start to feel better and better, with windows and waves.  You mention some improvements, which is an extremely good sign!  Have you read any of the success stories?  They are on the home page where the other forums are listed.  Please check those out.  I'm sorry to say this - it's both good and bad - but it can take many months, to even years to recover, but I doubt it will be many years for you, since you were only on the drug 5 months.   

 

Please do read these links, they can really help a lot: 

 

Techniques for Managing Withdrawal

 

How Long is Withdrawal Going to Take, Factors Affecting Withdrawal

[LukeUK]

Thank you for the kind words.

 

It's been 9 months off now. I have had some very difficult times during the last month, but also some much more encouraging windows which is a good sign. During these windows I'm actually reasonably well with some lingering symptoms rather than totally debilitated. The difficult times involved some major mood alterations, sudden drops in cognition etc. I've seen others have a bit of a fluctuation in symptoms before improving more, presumably symptoms of our brains try to correct things.

 

My cognition is a lot better on average, and so is the fatigue and feeling really unwell (although not always, again on average). This is a significant quality of life improvement as it means I can actually pass the time by doing things to distract myself. I have spent the vast majority of this process doing nothing as I was severely debilitated physically and mentally.

 

I now believe I will continue to heal, which does give me hope. It is still very hard though.

[Erimus]

Keep going Luke, things will get better! Once you hit 1 year and 2 years drug free the improvement will be marked.

[getofflex]

On 1/23/2024 at 1:37 PM, LukeUK said:

I have spent the vast majority of this process doing nothing as I was severely debilitated physically and mentally.

I just want to reassure you that on the outside, you were doing nothing, but on the inside, your brain and nervous system have been working very hard to heal!  Doing nothing is actually doing something!  Crazy, huh.  Have you ever read this link?  It has a very good analogy of how the brain healing itself is like trying to fix a damaged building while people are still working in it.  Very apt, because our brain is still doing major healing work, while trying to keep our body going.  

 

What is Happening in Your Brain? (Explains why recovery takes so long)

 

I can tell you are definitely healing, as you are reporting improvements and windows!  

[LukeUK]

Thank you.

 

Unfortunately the small windows are far outnumbered by the majority of times of terrible cognition and feeling horrible. I also randomly drop to zero sexual functioning, I thought I'd at least reached an improved baseline. I cannot live a normal life at all. The windows merely allow me to do things like watch TV/films.

 

My mental wellbeing is extremely low. I cannot deal with the total destruction of my life and inability to do anything about it. A future with no relationships is not one I want to live.

 

I try to just waste each day and hope that one day, in 3,6,9,12 months I'll be healed. I cannot even get to a point where I can turn a corner and at least live with symptoms while I heal further.

 

 

[getofflex]

15 minutes ago, LukeUK said:

I cannot deal with the total destruction of my life and inability to do anything about it. A future with no relationships is not one I want to live.

Please, please do not give up hope.  Have you ever read the success stories?  Please do this, it can really help a lot, if you are open minded.  I'm rooting for you, and we are here with you in this.  

 

Success Stories

 

The bad news is, it can take a very long time.  The good news is, there is a light at the end of this long dark tunnel.  

[Erimus]

Sounds like you're in a bad wave again, Luke. Just remember that they all pass.

[Sonia009]

You can do this Luke, don't let it get you down, you can fight this.

[Catina7]

On 7/25/2023 at 6:33 AM, LukeUK said:

I possibly have high histamine

 

Hi @LukeUK, have you read the thread about trying a low-histamine diet?  I'm thinking it might help you.  There was another member that experienced vast improvement after switching to low-histamine foods.  

 

Histamine Food Intolerance

[LukeUK]

On 1/31/2024 at 1:58 PM, getofflex said:

Please, please do not give up hope.  Have you ever read the success stories?  Please do this, it can really help a lot, if you are open minded.  I'm rooting for you, and we are here with you in this.  

 

Success Stories

 

The bad news is, it can take a very long time.  The good news is, there is a light at the end of this long dark tunnel.  

 

Yes, I've read them. Only some are relatable for me, other than the fact that nobody should be iatrogenically harmed without informed consent.

 

I had an adverse reaction to the drug immediately. Unfortunately I stayed on it for several months after attempting to come off fairly soon after starting. In a month I will have been off psychiatric medication for double the time I took it for, and I am still debilitated, still unfit for work, still cannot care for myself and still have PSSD. I'm not just having some annoying symptoms that I can live around. "Live" is a very strong word for what I am doing.

 

Today I went for a walk. Anhedonia prevents me from enjoying it and I needed time to recover from the vertigo, dizziness and head pressure it gave me.

 

I try to cling to things for hope, but those hopes always end up crushing me further. Other than vivid dreams and lack of restfulness, my sleep is usually ok now, I am currently telling myself that this will accelerate my healing. If it does not, that will be difficult to come to terms with. I have had many such optimistic self-talks proven wrong. My physical illness symptoms have reduced in severity, such as the heart palpitations and to some extent the fatigue, but my body is still under severe stress and it shows in my bloodshot eyes and skin that dries out, cracks or even develops strange rashes that ooze.

 

I already have damage to the career I've spent my entire life building in the same company, if I manage to keep that career at all. I have lost friends, my savings that I built up to do things I dreamed of with my life are depleting just to "live" this way, I no longer have those dreams because I am completely blunted, I may live a life devoid of joy and full of loneliness due to PSSD even if I somewhat recover my physical capabilities, and my physical health was totally destroyed. The combination of severe withdrawal and rapid weightloss almost killed me, and without others to help me with basic things like drinking water it definitely would have. I was in peak physical health prior to this.

 

It is simply too early to say that I will not have permanent, life-altering consequences and the argument could be made that I already have. Sorry if that seems negative but it is realistic.

 

Thank you for the kind words.

 

On 1/31/2024 at 3:40 PM, Erimus said:

Sounds like you're in a bad wave again, Luke. Just remember that they all pass.

 

I had one window of 3 days where I was able to function enough to do things for myself, still with difficulty. Before that, I had a "window" where my cognition was better but I felt profoundly ill and nauseous. That's all I've had since being so unwell I ended up being taken to hospital just over two months ago.

 

I try to be optimistic about them but it is very little to hold onto and the windows still involve symptoms.

 

On 1/31/2024 at 3:47 PM, Sonia009 said:

You can do this Luke, don't let it get you down, you can fight this.

 

Unfortunately, I can do almost nothing.

 

Thank you for the kind words.

 

22 hours ago, Catina7 said:

 

Hi @LukeUK, have you read the thread about trying a low-histamine diet?  I'm thinking it might help you.  There was another member that experienced vast improvement after switching to low-histamine foods.  

 

Histamine Food Intolerance

 

I tried DAO enzymes, I tried eating low histamine and I even tried eating a lot of high-histamine foods to see if it made me worse. None of it made a difference.

 

Thank you for the suggestion.

[Catina7]

1 hour ago, LukeUK said:

I tried DAO enzymes, I tried eating low histamine and I even tried eating a lot of high-histamine foods to see if it made me worse. None of it made a difference.

 

Thank you for the suggestion.

 

I'm sorry to hear it didn't help.  

[catmama]

Hi Luke, I've been reading through your posts and just wanted to reach out and say I hear and see you. I'm so sorry you're suffering. 

[LukeUK]

On 2/1/2024 at 6:58 PM, Catina7 said:

 

I'm sorry to hear it didn't help.  

 

I appreciate the suggestion. My gut seems pretty much fine and I do not have any kind of gastric reaction to any foods.

 

 

13 hours ago, catmama said:

Hi Luke, I've been reading through your posts and just wanted to reach out and say I hear and see you. I'm so sorry you're suffering. 

 

Thank you.

 

 

 

Over the past two weeks my cognition seems better and I have felt unwell less often. I would say my main symptoms now are:

- Excessive tiredness

- Sometimes feeling very unwell, but usually more just tired

- Sexual dysfunction

 

I have a lot of other less troublesome symptoms but they do not bother me too much, such as tinnitus and skin outbreaks. They do often intensify at the same time as the main ones do though, however they are not debilitating on their own. The tiredness is horrible and I often don't have much energy at all, but I'm not very physically debilitated. I can get up and walk, and do try to do a daily walk still.

 

I suppose feeling down could partially be a symptom, but equally the constant exhaustion and life falling apart without being able to change it is pretty grim. Long term loneliness is also taking its toll, as is financial stress. Ironically, if you list out the most common factors that negatively affect people's mental health, these drugs have caused most of them to be a factor in my life.

 

I hope one day for good health. From there I can try to rebuild happiness, I guess.

 

 

 

 

 

[LukeUK]

10 months off drugs.

 

My cognition is still okay.

 

My main issue is still tiredness, which comes and goes. My sleep is somewhat improved but there's still progress to be made. I also get headaches etc.

 

Sexual dysfunction persists, but is a bit better.

 

I have an array of other symptoms like my skin cracking and bleeding, tinnitus etc but they do not prevent someone from living a normal life.

 

I'm still not working, not living a normal life etc.

 

 

 

 

[Erimus]

2 hours ago, LukeUK said:

10 months off drugs.

 

My cognition is still okay.

 

My main issue is still tiredness, which comes and goes. My sleep is somewhat improved but there's still progress to be made. I also get headaches etc.

 

Sexual dysfunction persists, but is a bit better.

 

I have an array of other symptoms like my skin cracking and bleeding, tinnitus etc but they do not prevent someone from living a normal life.

 

I'm still not working, not living a normal life etc.

 

 

 

 

You should start to notice more improvements as you hit 12 months and onwards. The first year can often be very rough with no obvious signs of improvement, but remember that your body is healing in the background all the time.

 

I have skin problems and tinnitus, and like you they are the least of my concerns. As long as you continue to get some sleep and a little bit of gentle exercise you will recover well. Try and get any financial support you are eligible for, don't feel guilty.

[LukeUK]

4 hours ago, Erimus said:

You should start to notice more improvements as you hit 12 months and onwards. The first year can often be very rough with no obvious signs of improvement, but remember that your body is healing in the background all the time.

 

I have skin problems and tinnitus, and like you they are the least of my concerns. As long as you continue to get some sleep and a little bit of gentle exercise you will recover well. Try and get any financial support you are eligible for, don't feel guilty.

 

Thank you.

 

I'm barely eligible for anything. I am fighting to get my income protection insurance to pay out, again. I want to work again, I have already missed a promotion due to this and my career is hugely set back now after years of hard work.

 

I have improved a huge amount already, but I had an extremely severe reaction.

 

I am off drugs for double the time I took them, including tapering. I had no idea what was going to hit me.

 

I just hope the improvement continues. Being exhausted all the time prevents me from living, and a future with no relationships feels pointless.

[Erimus]

1 hour ago, LukeUK said:

 

Thank you.

 

I'm barely eligible for anything. I am fighting to get my income protection insurance to pay out, again. I want to work again, I have already missed a promotion due to this and my career is hugely set back now after years of hard work.

 

I have improved a huge amount already, but I had an extremely severe reaction.

 

I am off drugs for double the time I took them, including tapering. I had no idea what was going to hit me.

 

I just hope the improvement continues. Being exhausted all the time prevents me from living, and a future with no relationships feels pointless.

As long as you stay drug free you will recover, it's just that nobody knows how long it will take. It's very hard in a world where we are all expected to be fully-functional and working members of society.

 

I recently started undertaking a couple of online money-making methods, to keep my sanity and improve my financial state. I'm someone who loves working and earning so this whole process has been very difficult, being out of action so long.

 

It's the histamine action of mirtazapine that leaves you with all the exhaustion. Just keep distracting yourself, and maintain discipline with all the things that prmote good health. I promise you will recover.

[LotusRising]

Hey @LukeUK

 

Just wanted to reach out and say I hear you ❤️

 

The exhaustion is next level. I have a similar story in that I had a bad reaction to a medication I only took for 3 months. I've had a lot of symptoms get better, but the exhaustion is really tough to deal with and has been hanging around for a long time, so I can definitely relate. 

 

It sounds like you're getting some windows though, so I expect with time you'll continue to get better and better. Hang in there!

[LukeUK]

17 hours ago, Erimus said:

As long as you stay drug free you will recover, it's just that nobody knows how long it will take. It's very hard in a world where we are all expected to be fully-functional and working members of society.

 

I recently started undertaking a couple of online money-making methods, to keep my sanity and improve my financial state. I'm someone who loves working and earning so this whole process has been very difficult, being out of action so long.

 

It's the histamine action of mirtazapine that leaves you with all the exhaustion. Just keep distracting yourself, and maintain discipline with all the things that prmote good health. I promise you will recover.

 

The exhaustion is improving. I get out and do something every day, usually a walk. There is zero chance I will ever take any psychiatric drugs ever again. I would genuinely rather die.

 

It's not so much that I "feel guilty". I don't owe anyone anything. It's that my life has been destroyed, my near future is destroyed and there's just no point in a future at all where I cannot have relationships. I'm in my 30s. I spent my entire adult life building myself up financially, often going without, only to spend it on surviving this.

 

I was always there for others and now I do not really have friends. About a month before withdrawal hit, I drove 2.5 hours each way to stay with friends for the weekend, to see them and to help them out with their car- I spent most of the weekend repairing it. Now I do not hear from them, nor most of my other friends. I used to drive all over the country visiting all my friends, helping them out. They are all busy enjoying life, getting married, having children, quitting jobs and using what they saved up to travel the world etc. I've destroyed my career and finances to be chronically ill and it's like I ceased to exist to everyone.

 

I spent years getting into peak physical condition and beating body dysmorphia only to lose that to this.

 

I've also suffered absolutely immensely and even now I just exist day to day, while life gets more ruined and I can do nothing about it.

 

I have days where I try hard to be positive, and feeling down is probably a withdrawal symptom, but equally, why wouldn't I be unhappy? Recovery with chemical castration is not a life I want to live, at all.

 

My sister is in remission from severe long term illness and even she has gone and met someone and is in a fulfilling relationship. I have nothing that makes life worth living, and may never do. I'm suffering every day potentially for nothing.

 

 

13 hours ago, LotusRising said:

Hey @LukeUK

 

Just wanted to reach out and say I hear you ❤️

 

The exhaustion is next level. I have a similar story in that I had a bad reaction to a medication I only took for 3 months. I've had a lot of symptoms get better, but the exhaustion is really tough to deal with and has been hanging around for a long time, so I can definitely relate. 

 

It sounds like you're getting some windows though, so I expect with time you'll continue to get better and better. Hang in there!

 

Thanks. The exhaustion is improving.

 

Sadly, that's not the only thing that will prevent me having a fulfilling life.

[Erimus]

11 minutes ago, LukeUK said:

 

The exhaustion is improving. I get out and do something every day, usually a walk. There is zero chance I will ever take any psychiatric drugs ever again. I would genuinely rather die.

 

It's not so much that I "feel guilty". I don't owe anyone anything. It's that my life has been destroyed, my near future is destroyed and there's just no point in a future at all where I cannot have relationships. I'm in my 30s. I spent my entire adult life building myself up financially, often going without, only to spend it on surviving this.

 

I was always there for others and now I do not really have friends. About a month before withdrawal hit, I drove 2.5 hours each way to stay with friends for the weekend, to see them and to help them out with their car- I spent most of the weekend repairing it. Now I do not hear from them, nor most of my other friends. I used to drive all over the country visiting all my friends, helping them out. They are all busy enjoying life, getting married, having children, quitting jobs and using what they saved up to travel the world etc. I've destroyed my career and finances to be chronically ill and it's like I ceased to exist to everyone.

 

I spent years getting into peak physical condition and beating body dysmorphia only to lose that to this.

 

I've also suffered absolutely immensely and even now I just exist day to day, while life gets more ruined and I can do nothing about it.

 

I have days where I try hard to be positive, and feeling down is probably a withdrawal symptom, but equally, why wouldn't I be unhappy? Recovery with chemical castration is not a life I want to live, at all.

 

My sister is in remission from severe long term illness and even she has gone and met someone and is in a fulfilling relationship. I have nothing that makes life worth living, and may never do. I'm suffering every day potentially for nothing.

 

 

 

Thanks. The exhaustion is improving.

 

Sadly, that's not the only thing that will prevent me having a fulfilling life.

We all feel like this when in the depths of withdrawal. The mind plays tricks on you, telling you that you’ll never recover and will be ruined forever. Just keep reading the success stories and tell yourself that if all those people healed, then so can you.

 

Small victories each day, week, and month will provide the motivation you need to keep going.

Edited February 24 by Erimus

[LukeUK]

I appreciate what you're trying to say, but not everybody heals from PSSD. I'm in support groups with people who have had it for years, including those who have had it for 1-2 decades. That is not a life worth living.

 

I do read the success stories. Many of them heal over the course of years and were able to continue working in the acute phase despite having been drugged for years, have partners, continue to exercise and distract themselves with hobbies. When they heal, their life is still there. I took one drug for relatively little time at all, and am not at the level of ability many of those success stories had in their acute phases after being off it for double the time I used it, and my old life is gone. Often these success stories make me feel even more hopeless. I had an adverse reaction to being on the medication and stayed on it for too long, and then tapered way too quickly, and by the time I realised this the damage was done.

 

I cannot consider anything a victory. In the best case, if I made a spontaneous, total recovery overnight tonight, I would be standing, traumatised, in the smoking blast crater that used to be my old life. I won't be fully recovered tomorrow though.

 

I see from your story that you have lost a lot in life due to these drugs. If you are capable of perceiving things as small victories then you are stronger than I am. I cannot be glad I forced myself to go for a walk.