LukeUK: Remeron/Mirtazapine Severe Withdrawal

[LukeUK]

Hello,

 

I had a horrific year from late 2021 to late 2022. All of this culminated in a very bad mental breakdown, and I was struggling to eat.

 

• I was prescribed 15mg of Mirtazapine in mid-November 2022.
• I had quite intense physical side effects for a while, mainly fatigue and very heavy, aching limbs. I took the first dose before bed and had the side effects the next day. I also had an instant loss of libido and ED.
• I tried to taper off the drugs in January 2022 and quickly had another breakdown after initially feeling better, no physical symptoms. I ended up being prescribed 30mg by the GP and had 3 weeks off work.
• I returned to work, but was still not good emotionally/mentally ie. I don't think the medication really helped.
• I had EMDR therapy, which helped me to get better from the traumas I had suffered, and I was doing well mentally.
• I spoke to my GP (regular doctor in the UK), and tapered down from 30mg over around 4 weeks and took my last dose on around the 24th/25th April.

 

All through tapering I felt pretty great. I was going to the gym and my physical strength increased all the time back to where it was pre-drugs. My sexual side effects were rapidly diminishing and I met a wonderful young woman.

On the 1st May I did a 6mile walk and went to the gym. I thought everything was going great, and I had no idea that I was going too quickly and felt better and better every day. I had no idea that symptoms could be anything other than mental/emotional and poor sleep from withdrawal. My sleep was lighter and not great, but still okay.

 

On the 2nd May I was at work and felt very anxious and had worse brain fog throughout the day. By the end of the work day I felt terrible and thought I was just getting unwell. My boss had been unwell and I had been in close contact with him.

 

I had awful illness from then on. "Flu-like" symptoms- found it very difficult to eat and when I could it was the plainest food possible. Intense fatigue. These were all symptoms of what my boss had been ill with.

 

After some days, I wasn't getting better, and although I was sleeping I was experiencing common issues similar to those I have since found online ie. waking up at 3am every night, waking up each morning fairly early with a big cortisol dump/anxiety. I worked from home as best I could for three weeks, but this week I have finally had to take time off work.

 

I have improved from the first week and a half of intense flu, and am left with mainly chronic fatigue and still have difficulty eating. I feel pretty rough from not eating much as well. I am sleeping, but still often waking up at 3am and then again at 6ish.

 

I have days when I don't feel as bad, and then I have days where I'm totally exhausted and can barely eat, like today. Yesterday was okay. Sadly, a week ago, my erectile dysfunction also returned for the most part. I have windows of entire evenings when I feel okay.

 

My GP's theory is that withdrawals should be mild, and that I had a viral bug at the same time as withdrawals which made it worse. I did have blood tests done on Tuesday which I am hoping to have an appointment with the GP tomorrow (Friday) to discuss. He said that reinstating seemed risky now that I'd gone so far through withdrawals and that I should just start feeling better very soon.

 

I'm so torn as to what to do. I have improved since the earliest, very acute symptoms. I haven't had ANY relapse depression at all, I just want to be physically well like I was during/before tapering. From reading this forum, I'm around the 1-month mark where reinstatement starts to get risky. The smallest prescription dose is 3.75mg. Although the general trend is upward, I still have awful days and quite frankly unless I improve significantly I cannot return to work any time soon. I know it's somewhat unrelated, but I have a holiday in two weeks that I booked in Autumn, and although the wonderful person I've been seeing briefly is very patient and understanding, and I've seen her at times when I've been feeling okay, if I am unwell for much longer I cannot expect her to hang around as we've only recently met.

 

I am desperate not to be so unwell anymore. I was doing so well other than physical side effects, and was living life etc. I will update tomorrow with blood test results etc. but what would people recommend? Push through or reinstate a low dose? I've ordered DAO enzymes that should arrive tomorrow. I'm intensely fatigued today so maybe a good night of sleep tonight will make tomorrow better.

Edited May 26, 2023 by manymoretodays
name to topic title, excess white space removed

[getofflex]

Hello, and welcome to SA.  We are a volunteer-run community of people who have been or are getting off of psychiatric drugs.  I'm sorry to hear that you are having to deal with these problems caused by mirtazapine.  Let me give you some basic information to help you understand what is happening to you, then give you specific suggestions later.  

 

Here is some important information about how these drugs actually work.  This explains why we get symptoms from going off of these medications, and why it's so important to taper slowly and carefully, and be very cautious about changing our doses: 

 

How Psychiatric Drugs Remodel Your Brain

 

 

This helps you understand what withdrawal syndrome is: 

 

Video on Recovery from Psych Drugs

 

Windows and Waves Pattern of Stabilization

 

 

Here is a link with checklists of common WD symptoms: 

 

Dr Joseph Glenmullen Withdrawal Symptom Checklists

 

 

Here are some techniques to cope with symptoms: 

 

Non Drug Ways to Cope with Withdrawal Symptoms

 

Stability is really important when we are tapering off psych meds.  Please read the link about stability:

 

Keep It Simple, Slow, and Stable

 

 

We don't suggest many supplements, but 2 that many of us find helpful are magnesium and omega-3 fish oil. Here are the links for info about those. It is suggested to add one at a time, and start with a low dose to see how it affects you. 

Magnesium

Omega 3 Fish Oil

 

In you post, you state: 

 

On 5/25/2023 at 11:58 AM, LukeUK said:

I have improved from the first week and a half of intense flu

 

On 5/25/2023 at 11:58 AM, LukeUK said:

I have windows of entire evenings when I feel okay.

 

On 5/25/2023 at 11:58 AM, LukeUK said:

I have improved since the earliest, very acute symptoms.

 

On 5/25/2023 at 11:58 AM, LukeUK said:

the general trend is upward

From what you say, it sounds like you are seeing improvements, which is a really good sign.  And, the fact that you are having windows where you feel okay is another very good sign.  Based on this, I would suggest pushing through, and not reinstating mirtazapine.  I do very much understand your frustration with the windows and waves process.  It is very hard to feel such relief at feeling better, and thinking this ordeal is finally over, only to have the return of symptoms the next day.  Unfortunately, this is very typical for recovery from psych meds.  

 

I'm not familiar with DAO enzymes.  I will warn you that any supplements other than magnesium and omega 3 are not recommended, as supplements tend to have unpredictable results for persons whose nervous systems are destabilized by withdrawal.  

 

The keys to recovering from this are loads of patience and time, as well as natural self care.  The brain is highly complex, and it takes a lot of time to find its equilibrium.  Another thing to note, is that too much intense exercise can cause an uptick in symptoms.  Doing a 6 mile walk plus the gym may be too much.  For me personally, taking walks outside for about 30 to 45 minutes was very effective.  

 

Please keep us posted on how you are doing. 

[LukeUK]

Before updating this post, just to clarify I felt fine when I did the long walk and gym session, it was the day after that that my illness started.

 

Update:

It's now 7 weeks tomorrow that I became sick, and nearly 2 months since my last dose of mirtazapine.

 

It is unclear to me still whether I am experiencing just withdrawals, post viral symptoms or both.

 

Sadly, the girl I started seeing shortly before these symptoms has called it off- I'm simply too unwell for a relationship to progress.

 

Sadly, I'm left with symptoms that seem very in line with post viral fatigue. My sleep is improving now, but I'm tired all the time. I currently cannot work. I returned to work for a couple of days and then had a huge, multi-day fatigue crash where I couldn't really move nor eat. Fortunately I have supportive parents who I now live with so that I do not have to expend energy taking care of myself.

 

I do also have waves of anxiety, I guess some of this is caused by the stress of being unwell. I have unfortunately experience of a relative with long covid for 1.5 years so I'm worried about my own future. I grieve for the person I used to be before a hard year and then a further hard 5 months on and then coming off psychiatric drugs.

 

I also have had bruxism for weeks now.

 

I had erectile dysfunction as a result of taking the mirtazapine. This improved all through my taper and then worsened significantly 2 weeks into being ill. It improved slightly but I now take taladafil at a 5mg daily dose which does help. There's little point in needing it for now, but I want blood flow to the area to keep it as healthy as possible.

 

Nobody here can know whether my fatigue is a result of AD withdrawal or post viral. One thing I'm considering is I may have been very unlucky and caught a virus right at peak withdrawal from a strong anti histamine so my immune system has become very messed up.

 

Chronic fatigue seems not to be a common symptom of protracted withdrawal for most people. Would anyone care to weigh in on this or provide examples?

 

Most people seem able to work and have an array of symptoms that impact their quality of life.

 

I do have windows where the fatigue isn't as bad. This does happen with chronic fatigue syndrome as well though so it's hard to say.

[manymoretodays]

Hi there LukeUK, and welcome aboard,

I'd go easy with the tadafil, or brand name Cialis .  Tadalafil Uses, Dosage, Side Effects-Drugs.com

Or.....use less than the recommended dosage.  I'm not a male human and so.......keep that in mind.......yet, I have gone through WD, and the subsequent journey to full healing.  And I just know, if something is not needed, it might be wiser to just wait........while your CNS attempts to return to normal versus adding things that might skew recovery at this time.

 

And yes, fatique can be a very prominent WD symptom for some.  As yet, with the unknown factor of how much of post viral symptoms are at play, and how much is pure WD.......it's hard to know or classify what you are describing as chronic.  In other words, stay hopeful.  It may or may not be yet, time will tell.

Some topics we have:

Chronic Fatigue Syndrome, ME, CFS

Exhaustion

 

Was the Remeron/mirtazapine your first go round ever with psychiatic type drugs?

 

And it's also very promising that you have been able to use non-drug coping already with good results even prior to your faster taper, and coming off the mirtazapine.

 

I'm so sorry that you are in this place right now of life on hold.  It does get better.  I will reassure that it will.  You are now in early days so do not lose heart or hope.

 

As the time frame since coming off the mirtazapine to now is just a couple of months I'll give you this topic too to read over and ponder:

About reinstating and stabilizing to reduce withdrawal symptoms

I'm not certain that mirtazapine ever agreed with you though or helped.  So just putting that there now, if you haven't seen it yet.  And.....if this sounds like something you'd like to try, as you are now just 2 months since your last dosage.....please do ask us for a reinstatement dose idea. And as you'll see we start real low, and go real slow, and observe before even getting anywhere near your previous doses.  This IS the harm reduction way. 

And, I'm in agreement with getofflex......... on that I'm not sure it would be of real benefit or not right now.  Your time on the mirtazapine wasn't prolonged really..... and so that bodes well for your eventually return to baseline.  Plus you've had recent infections too to recovery from and it's all mixed in with your mirtazapine usage and then WD.  So.  Hard to get a good picture.

 

Those Windows you mention are an excellent sign that you ARE beginning to stabilize and heal.

 

I would, most definitely try real hard not to add in anything now, outside of our basic supplement's.  I know it's hard when you are feeling so lost......but try to not skey the picture with other additions right now.

 

Welcome aboard again, and sorry you are having to go through this all.  Many here in the same boat right now.

Best.

Love, peace, healing, and growth,

manymoretodays(mmt)

 

 

 

Edited June 21, 2023 by manymoretodays
just bolded in agreement part.....to be clear, I don't know why I put the reinstate topic in there anyway. Pressed for online time I think.

[LukeUK]

9.5 weeks since I became sick. Nearly 11 weeks since my last dose.

 

The fatigue is improving, but slowly and not linearly. I'm not convinced that I did contract a virus, or if I did I think this is withdrawals not post viral fatigue.

 

I have days where I feel okayish, but tired. Like a regular person who needs a good night of sleep. I also have days where I feel intensely sleep deprived and just awful. Sometimes these are after bad nights of sleep.

 

I do sleep each night, but it can be quite variable.

 

I believe that the fatigue is due to my physiology continuing to adjust towards hopefully homeostasis. My libido has gradually increased, again non linearly. The fatigue is sometimes but not always accompanied by irritated and dry eyes. My appetite is slowly improving.

 

Two and a half weeks ago the fatigue was so severe I could barely move and could often not get up for water etc. Now it is not really physical, it feels more like insane sleep deprivation.

 

I'm unfortunately still unable to work.

 

Mentally I'm stable etc. although obviously finding this situation difficult and upsetting. I think the mirtazapine gave me paradoxical effects and worsened my anxiety.

 

I will try to reintroduce short walks, if they do not crash me and they help it is likely that this is withdrawals and not post viral fatigue. Earlier in this process I was walking and it didn't make me worse.

 

It's daunting, even if I continue to improve and return to work, I am then faced with rebuilding my life after the circumstances that lead me to take these drugs in the first place. I was on my way to that before stopping the drugs which is quite upsetting.

 

I have to hope that over the coming weeks I will continue to improve. I just need to not be exhausted. Perhaps at the end of month 3 I will be in a much better place.

 

Until I got sick I had no idea physical symptoms were possible, only emotional difficulties which I was already wrestling with on the medication and was very prepared to push through. I had no idea essentially being physically disabled and needing care for some time was possible. My story certainly should show that withdrawals are very real as I am not depressed and my anxiety has reduced by probably 95% at least since it peaked during this process. The palpitations and adrenaline rushes that I experienced during the middle of withdrawals were similar to but stronger than the ones that started when I took the drug.

 

My late stage fatigue does still seem atypical compared to most. I definitely think that reinstatement is not sensible at this stage.

 

I will continue to update this thread regardless of whether I'm getting better or worse as a lot of these stories seem to stop part way through- I hope this is because for the most part people do finally get better and move on. My hope is that my story will become positive.

 

I'm quite sad that being sick for two months destroyed a newish relationship, as it had a lot of potential and was a great thing to happen for me after how horrible life had treated me before and during mirtazapine. Hopefully I can find happiness again if my health and energy return.

 

 

 

 

[LukeUK]

The fatigue is improving, slowly. I'm still unable to work. I have tired spells, headaches, dizziness and tired eyes for parts of the day, not all day now. I do not think this is post viral- walking and doing things seems to not induce post exertional malaise the following day.

 

I still have sexual side effects. I stopped taking taladafil a while ago in case it was causing the fatigue and it made no difference. Doctors didn't even believe me when the mirtazapine caused them instantly upon taking the first pill. I had never experienced any dysfunction at any point in my entire life even during complete mental breakdowns and severe depressive episodes and plenty of very difficult times in life. 

 

In a little over a week it will be 3 months, a quarter of a year since my last dose. This is all from a total of only 5 months on the medication.

 

Maybe in more time I'll recover enough to work, but I want to recover my ability to have relationships. I beat the mental illness, but so far I cannot escape the hugely detrimental impact these drugs are having on my ability to live any sort of life. I'm not depressed, I just want my energy back and bodily functions working the way they did before I took the drugs.

 

Before this I was very fit, ate incredibly healthily and took generally very good physical care of myself.

 

Even if I woke up 100% better tomorrow I still have a life to rebuild as a result of this. Realistically getting better is still a process all by itself before I can even start that. If sexual side effects persist, then it will be a very lonely life I'm building for myself.

 

 

[manymoretodays]

Thanks for the update LukeUK. 

Have you had a general health check up recently?  I finally got in and did mine, and my functional doctor found my Vitamin D level was low.  I do take Vit D daily, but often reduce it in the sunny summer months here.  So......I'm going back up on mine.  AND feeling less exhausted than I had been.  I don't know why I put off seeing my regular doctor for so long sometimes.........well, my trust in medical doctors was really shattered after my experiences with psychiatrists.  I'm glad I did my Well Child/Adult check up though........as I had some other issues too, that I wanted to look into with my doctor, plus I'm at the age where I need to do all the preventative maintenance tests too.

 

It'll get better, things will improve......it often seems like it's at a snails pace though.

Keep posting.  Keep us updated.  Go visiting other members if up to it, as most here do "get it" and we do need to stick together.

 

L, P, H, and G,

mmt

 

 

[LukeUK]

Thank you.

 

I had a comprehensive suite of blood tests done a few weeks into becoming unwell. It showed no abnormalities other than high cortisol. Prior to this unwellness I was in fantastic shape and exercised daily with a very healthy diet and was very into weightlifting. None of the health complications I experienced on the drugs and coming off them are things i have ever experienced before. Doctors have no explanation for what has happened to me except for one who saw the BBC panorama documentary and thinks I'm unlucky. 

 

I have recently done a 24h cortisol test that I'm waiting for results on but I think it will have settled down now and that I had high cortisol as a symptom of the acute early withdrawals given all the heart palpitations and adrenaline rushes I was having along with 3am wakeups etc.

 

The fatigue is still improving, not always linearly though. I have been suffering more with low moods and occasional anxiety.

 

I've been able to go out for daily walks most days when the weather isn't terrible. If I was able to do more without being constantly low energy I could distract myself more.

 

I know that compared to a lot of people's protracted withdrawals 2.5 months of being unwell is still early in the process, but the unknown of how much longer I'll suffer is upsetting to say the least. I'm sure many others experienced this mourning and grief at one point- realising and coming to terms with not being temporarily unwell but having a health condition that will take considerable time to resolve, if it ever fully does. In around a week my last dose will have been 3 months ago, I used the medication for a total of only 5 months.

 

One of the main reasons I haven't posted on other members' threads is that I'm fairly early in my journey, so it is difficult for me to say things like "it gets better in time" as I cannot really give that kind of advice yet. I do read some of them and will try to provide support when I can.

 

I hope that in another month I have progressed significantly. I have to accept that I have been incredibly unwell, 4 weeks ago I could barely stand and I certainly couldn't feed myself etc and was still struggling to eat. Now I'm still tired but it's more just low energy with a low mood, difficulty concentrating sometimes and my sleep isn't great. I've got the occasional pounding heart with low libido and ED. I know that this isn't complete relapse of depression etc as I would absolutely love to have the energy and libido back, it is not a question of motivation, and I never had any of these issues before taking the medication. 

 

 

[manymoretodays]

On 7/15/2023 at 7:52 AM, LukeUK said:

I hope that in another month I have progressed significantly. I have to accept that I have been incredibly unwell, 4 weeks ago I could barely stand and I certainly couldn't feed myself etc and was still struggling to eat. Now I'm still tired but it's more just low energy with a low mood, difficulty concentrating sometimes and my sleep isn't great. I've got the occasional pounding heart with low libido and ED. I know that this isn't complete relapse of depression etc as I would absolutely love to have the energy and libido back, it is not a question of motivation, and I never had any of these issues before taking the medication. 

 

Okay, it does sound like some progress then.  And I am so sorry it has been such a horrible journey.  I'm sure it's really tough.

 

Glad you got some blood work done. 

 

Did I give this link yet?  Early-morning waking- managing the cortisol spike  There may be something in there that is helpful in coping.

At one time, I too, had a cortisol urine test done.......while still heavily medicated.  And then later learned they, the tests.......aren't real helpful with anything.

You may find more here  If not in the cortisol topic, check some of the other topics that are indexed there.

 

Okay, understandable........as far as posting on others topics with encouragement.  You Will Get There.......to a better place LukeUK.......it can feel like forever and a day though.  Stay in the moment, find what is going well enough, or even improved.

 

L, P, H, and G,

mmt

[RachelSusan]

@LukeUK Hi Luke, I read your thread and wanted to say hello. I am sorry you are suffering with all these symptoms. It does sound like your symptoms are consistent with withdrawal.  I was on a different anti-depressant than you but all hell broke loose for me too a few days after my last dose. 

 

What you have gone through is truly traumatic. It is shocking for all of us when we loose our health. It does sound like you are improving which is very encouraging.  I hate to say it because everyone says it but it does take a long time.  Also remember that sometimes some of the symptoms return only to go away again. This is the pattern of windows and waves and nothing to fear, although rather frustrating. You are definitely going in the right direction improvement wise.

[Faure]

Hi Luke, I am really sorry to hear how bad things are for you. I too experienced dreadful fatigue, in my case when my (non SA recommended) taper failed and I reinstated. For about 3 months after the reinstatement I could barely walk around my small flat. I very slowly went back to work but was so tired I couldn’t do what I’d been doing before. Then the pandemic hit and we all know what happened next. Fortunately I was able to do a few hours work online a week and gradually built this up. It was not until I started an SA recommended taper about 2 years ago that the fatigue gradually started to abate. I still am not back to how I was pre mirtazepine but things improve with each small drop. So I think a big part of this drug is fatigue, when first started taking it I got more tired than before but nothing like after the failed taper. 
 

It sounds like things are slowly improving for you and I hope they continue to. Do keep us posted as to how you are ☺️

[LukeUK]

Thank you for the kind words. I wish I had known anything about safe tapering before coming off. I think I felt better and better all throughout withdrawal due to the paradoxical effect of mirtazapine at different doses- it was coming off the small doses to 0mg that messed me up badly. I simply didn't know- I thought that going from a low dose to zero was effectively a very minor change, as anyone would logically think.

 

@Faure be careful with feeling improvements with every drop and do not let this lure you into going faster. I'm glad your tapering is working for you.

 

My last dose was just over 3 months ago.

 

I have had some days when I wasn't tired all day, but it always comes back, and I'm always tired with burning eyes at some point each day. I possibly have high histamine, which could be linked to the fatigue, dry eyes, dry skin, poor sleep and heart palpitations, often at 4am and upon first waking. I tried the DAO enzymes for a while earlier on and it didn't seem to do much. I haven't noticed any correlations with specific foods and I don't really have any gut issues anymore and haven't done for a while. I may try some natural things like making ginger tea. I've never had allergies nor histamine issues before.

 

I have been walking more, and I have dizziness less and less often now. Most, but not all walks can be completed without feeling physically worse.

 

Unfortunately, I have had a fair few severely depressive mood swings, they typically only last a couple of hours though. Something about them feels unnatural- they last 1-2 hours and then I'm often absolutely exhausted afterwards. My brain is still stabilising perhaps. It's important to consider also that the situation I'm in and my quality of life are bad. I am very grateful that I have my family who can take care of me but they have been through a lot themselves and I wish I was not a burden. Generally I don't require too much direct care now which makes me feel less guilty.

 

I'm 31 years old, not far off 32. I have a successful career which is currently impeded and I took psychiatric drugs after experiencing multiple, exceptionally difficult life events in a relatively short space of time after having a difficult couple of years. Each one of these has the potential to seriously affect someone on their own. I was in the prime of my physical health and took care of my body a lot. I was very into weightlifting and was in great shape, I have lost 10% of my body weight now. These medications can affect anyone, even if you were previously in excellent health.

 

I healed from these events using therapy, and was finally living life well despite the side effects on the medication, only to now have been seriously unwell for a quarter of a year so far and my mental health is suffering badly for it. I am really struggling to come to terms with being unwell and mostly housebound for almost 3 months now (and going through a lot of physical suffering still) after 5 months of total usage. If I am well enough to attend, I have a session booked with the same therapist (it was EMDR therapy) to try to process the last few months.

 

Am I better than I was a month ago? Yes, on average. It has taken weeks but cognitively I have improved, and can now do basic things like play video games and read books when I'm not exhausted. Before, even this was too much, my brain simply barely worked. I am trying to be grateful for this, but as we all know it is hard- I do not want to be housebound feeling unwell and hungover doing these things. I want to be out living a life.

 

Will I be a lot better in another month? I hope so. I have seen stories of those who had a very rough time for a few months and then their rate of improvement increased significantly, particularly those who were shorter-term users like myself.

 

 

[RichardUK]

Hello Luke,

 

I had a nasty experience with Mirtazapine a few years ago and everything you've written is incredibly relatable. I'm typing this at work so need to keep it brief but just wanted to let you know that it's 100% possible that this is going to get so much better, across the board, even the ED (which is a major concern for a young man). What you're going through is hell, but you're doing awesome.

 

Feel free to message me, or reply here. Whatever works for you. I might not repsond too quickly, but I will respond.

 

Keep your chin up mate, and 'keep the faith' - I think that's something Leicester City fans like saying is it not?

[LukeUK]

I have been in touch with the member above. Hearing from someone who recovered is good.

 

Where I am now:

- Less allergy type symptoms like sneezing, sniffling etc.

- I do get quite a lot of sleep each night, I still have vivid dreams but a bit less nightmarish, and I do wake up early but tend to fall back asleep

-24h cortisol test came back normal

 

- Still wake up exhausted and unrefreshed, this usually improves a little after a couple of hours but I'm still tired and hungover feeling all day with very low energy. Some days are still worse than others, on the bad ones I can barely walk.

- Still have tired and fatigued eyes

- Still have very low libido and ED

- Still have very low moods at times, but then I'm exhausted all the time, unable to work, have a very poor quality of life with no end in sight. I do think these are mood swings though even if my situation is very upsetting

 

I don't seem to have sensitivity to any foods nor supplements, but equally, nothing really seems to help much. I try to go for walks when I can, I do not know if this helps either but it doesn't seem to make anything worse.

 

I had EMDR therapy yesterday. This fixed my mental health so that I could consider coming off the drugs in the first place. I am doing what I can to help my mental state but frankly it's very difficult to be positive. I haven't had a single day of good or normal physical health for more than a quarter of a year.

 

If I could stop being physically exhausted constantly, then I could start living some kind of normal life. Spending every day feeling physically ill and doing very little is torture- my quality of life is very low. I keep waiting for a time when I am not physically sick but it hasn't come.

 

How can I be physically sick for more than 3 months for 5 months of usage? If I recover enough to go to work, but am left with no ability to date and form relationships, what's the point in recovery?

 

I worked incredibly hard to get to where I was in life, and to maintain my physical health. All I can do is sit and be sick and watch this drug slowly sap it all away from me in a matter of months.

 

[RachelSusan]

@LukeUK it sounds to me as if you are seeing some improvement.  I know it is incredibly slow but you are moving in the right direction.  
 

I am right there with you, I am just getting out of a nine month wave.  We are both improving though.  Keep the faith. 

[LukeUK]

Thank you.

 

I have found it much harder to fall asleep recently, but once I do I do sleep.

 

Allergy symptoms come and go, as does the eye pain. If I cry it feels like the tears are acid. I wake up every morning feeling like I've been drinking heavily the previous evening. Fresh ginger slices steeped in boiling water do seem to help with allergy type symptoms a bit.

 

Zero libido and ED. In general just low motivation and energy. Even when I was going through everything that led me to take medication I have always been a high-energy person. This isn't me.

 

The last day I had where I struggled to walk was the 30th July and it's now the 7th August. It is progress but I still feel pretty rough all the time so it isn't really much of a reduction in suffering just because I can move more.

 

The current plan is to return to work part time at the end of this month, if I am able to. This would also be progress, but I'm very unhappy and being unhappy and also working doesn't really feel like much progress.

 

If I look at where I was this time a month ago, things are definitely better. I have suffered A LOT in that time though. Being optimistic about the future is hard- I know there is more suffering to come. I try to visualise recovery- my main fear is partial recovery and spending a protracted time well enough to work but not to be happy. I spent months in this state on the medication and it was horrible. Frankly, I want my libido back and I want the opportunity to seek relationships and I worry this will never be the same again.

 

[RachelSusan]

@LukeUK

5 hours ago, LukeUK said:

Allergy symptoms come and go, as does the eye pain

I found this statement interesting. I never had allergies and now with this withdrawal I suddenly have sinus pressure and pain, sinus drip, sneezing, and pain behind the eyes. I don't quite understand what is is all about but I am glad that you mentioned it.

 

Thanks again for stopping by my thread.

[DillyDally]

Im so sorry to read of your struggle @LukeUK

I truly empathise with your frustration and fear, especially in facing trauma only to find yourself in another traumatic situation.

I truly believe we can heal from this. There is too much consistency in the data, the experiences. As you rightly say, it is not linear, our experiences do differ, but they are similar enough to give me a greater sense of determination and hope than my fear and pain want me to have. I hope you can find that here too as I did

 

compassion is key, grief is healthy, anger is understandable and optimism comes and goes but no matter the feeling just know that every day you ARE healing bit by bit. Keep doing the best for yourself as you are, I am rooting for you

 

dillydally

 

p.s I too shy away from commenting on others posts as I feel ill equipped to offer advice and find it hard to feel like Im not saying the wrong things (whats right for me isnt right for everyone else sort of fear) but I felt very moved by your story and wanted to reach out, hope thats okay.

 

[LukeUK]

Thank you for the kind words. Of course it is okay to reach out.

 

I was wrong about my 24h cortisol test. The levels were still high. I will have more blood tests that will also look at hormone levels on Monday.

 

I was extremely fit and healthy before spontaneously getting sicker than I've ever been in my life after stopping antidepressants. We will see what the hormone tests show but realistically hormonal issues with sudden, spontaneous onsets are rare.

 

EVERY symptom I have had since stopping has been one I got from starting the drugs, but more severe. The only one that is different was the inability to eat for 6-7 weeks, which is the opposite of the appetite stimulant effect I experienced from the drug.

 

I have nights when I get a lot of sleep, and nights when I don't get as much. I have days where I have a bit more energy and days where I have less, but I am always tired. Always. I had somewhere between 9-10h sleep last night, I'm still exhausted.

 

Some days I get very depressed. Perhaps these are mood swings from withdrawal, perhaps they are me. I don't feel myself though. Anyway, looking at my current situation, there is little to be happy about, and being tired all the time doesn't help.

[DillyDally]

11 hours ago, LukeUK said:

Anyway, looking at my current situation, there is little to be happy about, and being tired all the time doesn't help.

I understand and you are right, there are a lot of variables at play to cause these feelings of course, as well as withdrawal being a cause itself. Lots of compassion to you. 

 

I truly hope there is more to feel happier about (ie more windows and consistency/stability) on the horizon. 
keep doing the best for yourself and keep checking in

[Faure]

Just popping by to say you will recover but it will take longer than you (and anyone) wants. Hang in there and don’t overstretch yourself as this can cause relapses. Be very careful with exercise when you feel up to it. You will likely not be able to return to full on exercise at once, it usually causes a relapse. Slow and steady walking at first. I spent a year doing very gentle yoga at home, then a year doing half a body balance video (yoga / tai chi) and this year have finally been able to start body pump at home. I just do about 20~25 mins with very light weights. 
 

I know it is so unfair that having only taken these drugs for such a short time you are suffering so badly. I’m sorry. 

[LukeUK]

On 8/10/2023 at 8:38 AM, DillyDally said:

I truly hope there is more to feel happier about (ie more windows and consistency/stability) on the horizon. 
keep doing the best for yourself and keep checking in

Thank you. I hope the same for you. It is good that you appear to have windows from reading your thread.

 

On 8/15/2023 at 8:44 AM, Faure said:

I know it is so unfair that having only taken these drugs for such a short time you are suffering so badly. I’m sorry. 

Thank you. I know that my chance of recovery is good, it is pretty much all that keeps me going.

 

 

My sleep continues to normalise. I now sleep a fairly normal amount per night, and the nightmares have eased into "vivid dreams".

 

I would say that for a little while the fatigue has evolved more into "tiredness" all the time. I have low energy, and often feel very sleep-deprived even though I'm not.

 

I've had a number of instances of severe depression, and other days not as much. The depression often coincides with feeling even more exhausted.

 

I am still going for walks. I think it is beneficial.

 

I am definitely improving physically. It is hard to see each day, but looking at a period of a week or two weeks there are small improvements. It is agonisingly slow.

 

Upsettingly, severe and protracted withdrawals was subject to parliamentary review in my country 5 years ago. The patient comments are very relateable:

http://prescribeddrug.org/wp-content/uploads/2018/09/APPG-PDD-Antidepressant-Withdrawal-Patient-Survey.pdf

 

Sadly, nothing has been done about this and prescriptions have only increased since then.

[LukeUK]

It has now been over 4 months since stopping the drug, after only 5 months of usage.

 

I have decided to make a list of the symptoms that I have experienced. I will add to it if I remember more, as there have been so many and it has been so long.

 

Extreme fatigue (to the point of danger- unable to get up and get water etc)

Flu symptoms and feeling very unwell

Cognitive issues (at their worst I couldn't understand TV sitcoms)

Heart palpitations, often at 3am

Bruxism (to the point that I had constant pain)

Disturbed sleep

Nightmares

Adrenaline rushes upon waking up

Feeling hungover every morning

Dizziness

Headaches

Muscle twitches

Different parts of my body being simultaneously hot and cold

Waking up very hot in the early hours of the morning

Brain fog

Anhedonia

Mood swings

Nausea and struggling to eat

Rapid muscle wastage (9.5kg of weight lost in a few weeks)

Complete genital numbness (for a week or so)

Erectile Dysfunction

No libido

Tingling/pins and needles sensation in genital area

Skin rashes on my face

Hives

Sneezing

Itching

Eye pain

Difficulty walking

Muscle weakness

Intolerance to caffeine

 

 

What I'm left with now is:

Fatigue

Morning hangover feeling

Eye pain

Disturbed sleep (I get a reasonable amount of sleep most nights but often wake up)

Waking up very hot in the early hours of the morning

Mood swings

Erectile Dysfunction

Tingling/pins and needles sensation in genital area

Low libido

Sneezing

Skin rashes

 

Lately I have been putting a lot of effort into my gut health- I have been taking probiotics, drinking kefir after most meals and daily yakults. I think it has helped somewhat.

 

Needless to say, I'm far physically weaker than when this started given that I've been unwell and mostly sedentary for 4 months, and I watched my muscles waste away noticeably over days and days in the mirror. Before this my main hobby was weightlifting. I have been to the gym twice recently to try to get moving and do very gentle exercise and using weights that were easy warm up ones previously were still too much. Today I'm too unwell to go, it feels like I've woken up with a hangover and I'm exhausted. I can barely manage going anyway.

 

I complained of fatigue and sexual dysfunction immediately upon starting the medication in November 2022. I was repeatedly told it would go away and was probably my depression anyway. I can now see my full medical history and it was never even noted down, despite repeated complaints. I never imagined that these could persist after stopping. I was so happy that during tapering I could move on with my life and had more energy to socialise and date, I had no idea about withdrawals nor persistent effects being possible. Unfortunately this was only long enough to get attached enough to someone that when I got very sick it was upsetting to lose them.

 

Now, I have finally been referred to an endocrinologist, the appointment is at the end of January 2024. OVER A YEAR AND TWO MONTHS after I started taking these medications and having side effects. It's disgusting what has been done to me. Within 5-6 weeks of becoming sick multiple practitioners gave up and warned me I might be disabled for life with chronic fatigue syndrome which was immensely stressful. Adverse effects of this nature have been reported to the authorities thousands of times a year (the data is visible). This should not have happened to me. I had no warnings about any side effects at all. I was gaslit the entire time I was on the medication. Sexual side effects aren't even on the leaflet and packaging of this medication.

 

I have never really had any physical health issues prior to these medications, and was in fantastic physical shape. Now they have not just given me some health concerns but I have been totally disabled.

 

I am starting work on Tuesday, on limited hours with a phased return. Can I cope? I hope so. I have lost a lot of income already.

 

I know that this site does not treat depression and psychological issues, but I took these medications after multiple horrible life events occurred in a short space of time and I was desperate for some help. The result is they disabled me and I have suffered so much and continue to. In 5months of mild fatigue on the drugs and 4 months of being totally disabled, unable to work living with family I've lost touch with a lot of friends, and I am unable to pursue any kind of relationship nor any of my hobbies and interests.

 

All of the coping strategies are failing me. Practice acceptance? How can I accept this? Be grateful for the progress I've made? None of this should have happened and I am struggling to find gratitude for my constant suffering to be at a slightly lower level. Now I am less disabled, but every day I go to bed knowing that I have to wake up and suffer again. My quality of life is terrible.

 

I think you can imagine how this has affected my mental state.

[checco]

I have the same symptoms and I took mirtazepine and it's almost 18 months since the last dose I have a very bad wave triggered by very difficult life situations. I am taking micro doses of lamictal and it seems to help itself very slowly too.

[LukeUK]

This morning a patch of skin peeled off my forehead and it is now raw and irritated.

 

I never had any skin issues until starting this horrible drug.

 

A doctor yesterday suggested I might have fibromyalgia. They'll do anything to diagnose me with something that is chronic and requires no further action. So far I have continuously pointed out that I do not meet the diagnostic criteria for any of these and that all issues started with taking mirtazapine, and got far worse during tapering. Also, all issues are related to systems mirtazapine interacts with or are known side effects of taking it. Naturally, they still do not believe me but offer no treatment or alternatives beyond labelling me disabled.

 

No chance of continuing with the gym, I am far too exhausted and dizzy. I started working from home for 3hours a day yesterday and even that is a huge struggle.

 

Despite struggling with difficult life events, I was in perfect physical health before this poison destroyed almost every system in my body.

[Faure]

I’m really sorry Luke. I quite agree that doctors just don’t know and won’t accept the terrible adverse effects of these drugs. Have you seen the info from the Royal College of Psychiatrists about stopping anti depressants? My GP had not heard about them till I told him, then he said he’d shared it with his team which I thought was an amazing step forward. 
 

This will pass and you will recover. I know it doesn’t feel like it right now and your life is totally destroyed compared to how it was. If you can work on accepting what has happened and perhaps direct your energy / anger into something else, that might help you. I read a book about ADs and learned more about just how destructive they are and how big pharma has manipulated trial data etc etc. it helps to know that we are not to blame, nor the GPs really, we are all victims of drug companies chasing profits 😒 but it certainly wouldn’t harm GPs to listen to what we are actually telling them. 
 

Well done for getting through some work recently. I hope you can manage to keep that going, it’s not at all easy, I know. 
 

edited to add:

 

meditation is something that has really helped me through my journey with anti depressants, and life. I started it in March 2020 when overwhelm loomed because of the pandemic. It was so beneficial I have kept it up most days ever since. I do recommend giving it a go. It helped me recognise unhelpful thoughts - with me it was “on no, I feel so tired, I’m really worried how tired I am, I’m going to get ill again”!  I was able to notice the thoughts and the pattern and say to myself “here I go again with those thoughts!” and also notice I wasn’t getting ill again despite the “tired”. 

Edited August 31, 2023 by Faure

[LukeUK]

Thank you for the kind words.

 

I have had some windows where I haven't felt as exhausted (but never 100%). I hope that they return. Outside of these windows I'm very tired, all the time.

 

Unfortunately I'm struggling with depression. It comes and goes. It is hard to say how much of it is real and how much is withdrawals. It often coincides with being constantly exhausted. I suspect that it is a bit of both- the low mood is due to withdrawals, but also I have much to be depressed about.

 

I often wish that I could simply fast forward to some time in the future when this is just done. I'm sure others have the same wish.

 

Being constantly exhausted makes it very hard to do the things I enjoyed before this, it is very difficult to look after my mental health because of this. 

[Faure]

On 9/12/2023 at 8:25 AM, LukeUK said:

Outside of these windows I'm very tired, all the time

I know 🙁 it has got so much better for me. I’m sure it will for you as well.  Keep plodding on, things will improve. 

[LukeUK]

Sadly I've been bedridden for a few days now. I just about managed to walk today but it was incredibly hard.

 

I am probably going to have to stop working again, I can barely stand up.

 

I feel unwell and exhausted every day, in around ten days I stopped mirtazapine 5 months ago, after using it for 5 months.

 

I still haven't regained my full emotional range, and I am pretty much disabled and still require the care of others to survive. I've lost huge amounts of income, and my career and home are at risk. I want more than anything to have my vitality and health back and to go back to my life but I'm beyond unwell.

 

I'm suffering badly every day.

 

I don't care if the doctors don't believe me. I just want them to attempt to treat me or run more tests. Anything. 

 

I've lost all hope of full recovery. My body and brain are very damaged. 

 

 

[Faure]

Recovery comes in windows and waves. It sounds like you are in a wave and I’m really sorry to hear how bad things are for you and that your house and career are at risk. It is so unfair that this happens to people who take these drugs and trust the doctors are doing the right thing, both when they prescribe and deprescribe them.  
 

When people come out of a wave they can often feel a bit better than they did before they went into it. It is a sign that healing is happening. 
 

I’d warn against expecting any help from the medical profession. They don’t understand withdrawal, as you are discovering, and often prescribe other anti depressants that nearly always make things worse. I know only too well the desire to take a pill, any pill, to make you feel better, but they usually make things worse. The only treatment for withdrawal is either reinstatement of a very small amount within a few weeks of stopping (this can sometimes, not always, work and I have asked someone about this for you) and the other is time. It is a waiting game I’m afraid 😥

 

When I was in this situation I reinstated the original dose, against advice on here because I thought it would make things better asap. It didn’t. In hindsight I wish I had reinstated the dose Alto recommended (I was much close to stopping than you are) and just waited it out. 
 

 I will ask for help from a Mod for you. 
 

[LukeUK]

I welcome the advice, at this point I think the only way is through it.

 

I had a window of a few days where I didn't feel amazing but not terrible, and significantly less cognitive impairment.

 

The problem is my best windows allow me to go for a walk and maybe watch things/ do some gaming. Other than that, I'm bed or sofa bound and I just sit here feeling exhausted and really unwell.

 

Few people seem to be this bad this far out, I'm functionally disabled really.

 

I've got a private endocrinology consultation in a couple of weeks to see if mirtazapine has triggered another health issue. In reality I think it is just severe withdrawals.

 

No two days feel exactly the same. They're all awful, but different. This is why I think withdrawals have just totally dysregulated me. 

Edited September 18, 2023 by manymoretodays
none, error

[manymoretodays]

Hi LukeUK,

Sad to read this current status.......darn!

4 hours ago, LukeUK said:

I had a window of a few days where I didn't feel amazing but not terrible, and significantly less cognitive impairment.

When was this?

 

Overall, how does your present condition and symptoms compare with those you had in May?

On 9/16/2023 at 10:19 AM, LukeUK said:

I've lost all hope of full recovery. My body and brain are very damaged. 

Please don't lose hope LukeUK.  Change is really the only constant we can rely on and I hope the positive change is coming on up, right around the corner for you soon.

 

What were the recent infections that you had?  I need a little refresher on what's been happening and your history.

You do have some ground support it sounds like too, which is good, and makes me glad.  Again.......so sorry your best window is still very shy of being back to more functional.

 

Any additions of new drugs, supplements, or use of alcohol that we are not aware of?

 

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

 

Love, peace, healing, and growth,

mmt

[LukeUK]

18 hours ago, manymoretodays said:

Hi LukeUK,

Sad to read this current status.......darn!

When was this?

 

The window was about two weeks ago for 4 days. I feel okay but tired with a headache today after several days of being very unwell. I started working part-time from home but have had to give it up again. Some days it may be manageable but not consistently enough, I'm too exhausted and cognitively impaired. On bad days I was too impaired to do menial tasks far below my actual role.

 

18 hours ago, manymoretodays said:

What were the recent infections that you had?  I need a little refresher on what's been happening and your history.

 

 

I do not believe that I had an infection at all. My boss at work was unwell for a few days around the time my withdrawal started. Perhaps I was exposed, but I'm not convinced.

 

 

18 hours ago, manymoretodays said:

Any additions of new drugs, supplements, or use of alcohol that we are not aware of?

 

I am not taking any drugs. I used cialis daily for a while, I did not notice any side effects but stopped it in case it was causing further issues for now.

 

I have been taking various vitamins, but mostly just fish oil and magnesium threonate. Yesterday I tried some saffron. I have not noticed reactions from any specific foods nor supplements.

 

I have cut out caffiene for the most part, and have not had alcohol during the withdrawals.

 

I'm eating a healthy, balanced diet. 

 

 

18 hours ago, manymoretodays said:

Overall, how does your present condition and symptoms compare with those you had in May?

 

There's a post further up that summarises symptoms at the start and then. I was acutely unwell in May and early June, started to get better and then went very downhill in mid June.

 

Here is what is currently still an issue.

 

Fatigue (comes and goes, always tired but when it is bad I am barely able to sit up)

Morning hangover feeling and feeling generally unwell/malaise during the day

Eye pain (becoming uncommon now)

Disturbed sleep (I get a reasonable amount of sleep most nights but often wake up, I have had persistent nightmares for nearly 5 months)

Depressed mood swings

Anhedonia

Erectile Dysfunction

Tingling/pins and needles sensation in genital area sometimes

Low libido

Sneezing (now uncommon)

Skin rashes (now uncommon and less severe when it happens)

 

 

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.

 

 

Thank you for the support.

[manymoretodays]

Thanks LukeUK for all those answers.

 

How's your sleep?

Are you taking melatonin or anything pre sleep?  I'm curious as to what that "hangover feeling" is from, if anything.  Do you wake up further as the morning goes on?

 

[LukeUK]

4 hours ago, manymoretodays said:

How's your sleep?

Are you taking melatonin or anything pre sleep?

 

I listed disturbed sleep among my symptoms but here's more detail. I do not take any sleep supplements, but I often take fish oil before bed.

 

Immediately upon starting mirtazapine, I had intense nightmares, predominantly about the things that led me to take mirtazapine in the first place- fun.

Over the months I was on it, they faded to be more vivid dreams but not always bad. When I started tapering off, they went away. When withdrawal hit, they returned very forcefully.

 

For the first couple of weeks, my sleep was all over the place, lots of heart palpitations, racing heartbeat, in and out of fitful sleep. Then, for the first two months I woke up at 3am with heart palpitations/adrenaline/racing heartbeat.

 

Now, I do get a reasonable amount of sleep each night, no heart palpitations, vivid dreams but not always nightmares. I always wake up in the early hours after these dreams and usually fall back asleep.

 

4 hours ago, manymoretodays said:

I'm curious as to what that "hangover feeling" is from, if anything.  Do you wake up further as the morning goes on?

 

I don't often have it anymore, but for a long time I had awful waking inertia. My sleep/wake cycle was very disrupted and I woke up very slowly. I often felt incredibly unwell and improved slightly by evening time.

 

Now it's more pure exhaustion than feeling unwell.

 

Sometimes when I am at my most fatigued I feel intensely restless and impulsive, even though I can barely move.

 

 

Thank you for the support.

[Antecedent]

Hi. I just wanted to say that you are not alone in your suffering. I have somewhat similar situation to yours only in reverse. First I had a virus and a vax, developed Long covid/Post viral illness.  It was bad but somewhat manageable. I was prescribed Paxil for nausea and loss of appetite (which the GI doctor thought was from anxiety). After 5 months of Paxil I gained ton of weight, had sexual and other side effects. So I stopped it in 2 weeks. The first 1-2 months were ok. But then I had the onset of terrible fatigue and exhaustion. Unrelenting. With PEM. So at that point I fit the ME/CFS criteria. But again, everything was brushed off as anxiety and another GI doctor prescribed me 10 days of benzoes. After taking and stopping that I became almost bedbound with a dozen of new severe symptoms. So it's been 1,5 years after Paxil, almost a year after benzos and 2,5 after the virus and vax. My life is ruined. The symptoms wax and wane, come in waves, get a little better or worse, some disappear and new ones pop up... So you're not alone and I really want to tell you to hang on. I believe you have a good chance to recover. But it might be slow. The only thing we can do is work on calming and soothing our nervous system. All the rumination and catastrophizing puts additional stress on your CNS, and I do believe that constant fight or flight prevents us from healing and prolongs our suffering. It's really unfair that this happened to us, but I do believe that you are quite early in your journey and you have a good chance to recover from WD and/or fatigue. Please, don't lose hope.