Ripley: mirtazapine withdrawal and reinstatement problems

[Ripley]

Hi

 

I just wanted to write an update in case there is any advice out there for me. I suspect there aren't any answers but I haven't really come across anybody with exactly this problem and I'm not sure how to approach it.

 

If I have even small amounts of physical exertion I have the strange 'blocking' sensation in my brain as I'm trying to fall asleep followed by a night of insomnia. It's as I outlined above and I feel embarrassed about it as I explain it here, which seems odd. 

 

Last Sunday, I went with my family to a pretty village close by and had a potter around. I walked very slowly, although I did walk up a small hill, and we were out for about an hour. That night I had the 'blocking' sensation and no sleep. Yesterday, I did some yoga (at home) and the same thing happened. The other days I have just spent at home and slept well at night.

 

It seems bizarre as gentle walking and yoga are supposed to be good for you?! I felt really good when I was doing these activities. I don't have anxiety surges or any other symptoms to warn me. Just the 'blocking' sensation in bed - which is like a cool shudder/contraction in my brain that lasts about a second - and then insomnia. 

 

I'm very grateful to be sleeping for the rest of the time but this problem is getting me down. I'm obviously worried about imminent school-runs and just basic interaction with the world. I appreciate others have had problems with exercise in wd but I don't understand why I can't manage even gentle activities when I was so fit and active before. 

 

In terms of managing this, I don't know if it would be better to keep resting and avoid 'too much' activity which seems to be stressing my system OR keep trying to do things each day and try to 'build up' some kind of tolerance? Perhaps @altostrata you might please have some wisdom for me?

 

I struggle to write this as it feels so alien to who I am. I feel ashamed, frightened and upset. I'm sorry this isn't very positive! I should mention that this problem seemed to start mid-November and I have been holding since mid-September, following 2 awful spells of delayed withdrawal insomnia in mid-Sept and mid-November. It was after this November hell that the 'blocking' sensation appeared too. I also developed palpitations in December but they largely went by February although they return a little on my bad nights.

 

I'd be grateful for any ideas or suggestions with this. Thanks for reading.

 

Ripley

[Ripley]

Well, I answered my own question. I won't be able to push myself and try to 'build up' tolerance for activity as i have just had a second night of zero sleep. 

 

I can only accept things and go gently, which seems to be the default approach. Unfortunately, I'm struggling a lot with acceptance and have constant regrets about my (and my doctor's) mistakes with this drug. It feels like a long bad dream and I think I'm still in shock that such devastation can come about so easily. I can ruminate and blame myself no end, especially when I'm tired. I know I will have to work very hard on these things or I could become depressed. I think acceptance and regret are the hardest things about this predicament.

 

 

[AdviceNeeded]

I understand all of what you’ve said completely. I struggle with the same thoughts. Keep reminding yourself... you didn’t do this to yourself deliberately. 
 

Also, you are healing. You may not be able to perceive it but you are. There’s plenty of examples of people out there who had similar drug experiences and healed. Unfortunately, in all cases it took time, far more time than we’d like. I know that’s small consolation, but if they did so can we.

[Ripley]

Thank you for your message @AdviceNeeded. It helps. You're right and I need reminding right now....

 

I find it helps to keep reminding myself that 'I always did the best I could with the knowledge I had at the time.' Maybe that's helpful to you too x

[Malbec37]

On 3/7/2021 at 11:15 AM, Ripley said:

I think acceptance and regret are the hardest things about this predicament.

Hey Ripley

 

so sorry to hear of your suffering. I don’t have much I can offer other than to say to do as much as possible to relax your nervous system before bed...gentle chi gung exercises can be useful. I’ve also had some success with sleep using a technique called Emotional Freedom Technique or EFT. On YouTube there are plenty of specific videos for EFT and sleep where you follow along with the instructor...it’s very simple. Make sure the brightness is down on the screen when you do it as this can also keep us awake.

 

My mum is currently going through terrible insomnia problems too....it’s sadly all too common and it’s horrid 

 

keep going and know we are here for you....you’re not alone 

 

Malbec x 

[getofflex]

@Ripley I'm sorry to hear this.  Two nights without sleep is rough.  Here is a link with suggestions for helping sleep.  I, too, have experienced bad sleeplessness with my WD.  What helps me is listening to very relaxing music on Spotify.  There is an excellent 13 hour harp music playlist that helps relax me. I had to use the paid version of Spotify or the ads would wake me up or stimulate my nervous system. 

 

Tips to Help Sleep

 

 

Edited March 8, 2021 by getofflex

[marie123]

Hello Malbec. I was reading some of your previous posts and you mention that your liquid Mirt. bottle expires in 6 weeks. I would not use it past 4 weeks. This is what my pharmacy told me. Recently I used a bottle past 4 weeks because I was too lazy to go to the pharmacy. My insomnia got much worse and other symptoms increased like muscle pain. I tried the new bottle of Mirt and my sleep and symptoms improved.  Are you able to get a fresh bottle after one month? It might help your insomnia and other issues. I would also check if it is the same manufacturer each month. Good luck to you. Marie.

[marie123]

Sorry I mixed Malbec's posts with yours. This is for you Ripley. Marie.

[Ripley]

Thank you for your kind message @Malbec37, I will look into your suggestions and I'm sorry to hear your mum has insomnia too. I hope she can avoid taking a drug for it. 

 

I'm actually able to sleep ok after a day of just pottering at home. The problems come when I go out or have physical exertion, even though it's very gentle and pleasant! It feels illogical and beyond my control.

 

I think I may have worn my system out with all the sleepless nights and it struggles with even low levels of activity now. So I think I can only rest it and do things like you suggest. 

 

Thank you @getofflex for the music suggestion. I've seen this can help people as they're drifting off. Did you find it stopped you being alerted as you were falling asleep? As something definitely happens in my brain to wake me up at that point. I don't usually sleep with music so I'm worried it might be counterproductive but I know it's something I should try. 

 

I think fundamentally I'm dealing with a kindled nervous system after taking mirtazapine on alternate nights to stop, per my doctor's advice, and then my overly large reinstatement/updose. My main question would be: will tapering always be horrendous with a kindled system? I don't think my body can take any more protracted bouts of total insomnia and I have to somehow get off 6.6mg. I know this is doable with a normal CNS but I worry how my kindled system will manage any of it?! I think I hadn't really recognised the damage done until this latest symptom and I'm worried about the kindled aspect. Sorry to go on about myself like this....I'd be grateful for any advice on this.

 

X

[Ripley]

Hi @marie123

Do you have the liquid made by Rosemont? This is the one I have.

 

Thank you for your suggestion but I can't say I've noticed a deterioration after the 1 month mark. My problems arise when I go out or am a bit 'active'.

 

I see you're making slow and steady progress with your taper. It seems to be working well for you and it's good to see.

 

Best wishes

R

[Malbec37]

@RipleyI can see how upsetting and frustrating it must be to be in this situation. It’s a huge challenge to be affected like this. As you know that a little too much exertion results in insomnia then perhaps you can plan one day every week where you do more exercise (because we need it and we need to get out) then on that evening you use different strategies to calm your nervous system to see if you can sleep at least a little. And if you can’t at least you know sleep will be better for the other 6 days and you can cope 

 

Another idea would be to get some prescription sleeping tablets and take them only on the night where you do the exertion then they’ll help you sleep...it’s just an idea and i understand if you don’t want to get other meds involved due to what has happened with mirtazapine 

 

Wishing you well 

[getofflex]

5 hours ago, Ripley said:

My main question would be: will tapering always be horrendous with a kindled system?

Ripley, I do not believe so.  I, too, kindled my nervous system with several fast tapers and reinstatements.  I have very slowly and gradually gotten better.  The key to help you system settle down is to do a hold for a while.  Stay on your current dose for a good several months.  Last year, I stayed on my dose for a good 5 months, and it did me a world of good.  Your system needs stability so that it can heal itself, and get it's equilibrium back.  It sounds like for now, it's best to lay low and take it easy.  When I felt very bad, I just did the minimum to survive, and no more.  Our brains have amazing healing ability, but it takes a long time.  Hang in there. 

[AdviceNeeded]

6 hours ago, Ripley said:

I know this is doable with a normal CNS but I worry how my kindled system will manage any of it?! I think I hadn't really recognised the damage done until this latest symptom and I'm worried about the kindled aspect.

I believe it’s doable. I think it’ll probably be a long process but it can be done, with a full recovery. Moui, Kiaza and NaturalBorn all reinstated high and had problems, and all made a full recovery. 
 

I understand how you’re feeling, it’s daunting and feels insurmountable, but it’s not. I’m sorry I can’t offer anything else.

[Ripley]

Thank you @Malbec37, @getofflex and @AdviceNeeded for your messages, I appreciate them!

 

I'll report back in a few months and I hope it's better news.

 

All the best to you

X

[Ripley]

Hello @Altostrata, @brassmonkey

 

I'm hoping you might be able to guide me somehow please but I realise there are probably no easy answers.

 

I have been 'waiting for things to improve' but my family is now at a crisis point and just 'waiting' isn't enough anymore. My husband says I need to 'see someone' or 'go somewhere' for help. And you are the only people I know who would have a clue!

 

I've been holding since Sept 17th and this problem emerged mid-November after another awful bout of insomnia. Could an updose help after all this time?

 

My problem is that activity beyond pottering around at home seems to trigger a glutamatergic (?) response at night. I have a surge in my brain/chest as I'm trying to fall asleep and then total insomnia. I am at a complete loss as to why a gentle stroll would have this effect. 

 

I've been taking it easy and avoiding provoking this reaction but it seems to be getting worse with time! I can no longer manage even the short distance I could do in Jan/Feb. I don't understand!? Is it possible to get more sensitive with time without any dose changes or antibiotics or alcohol etc? 

 

When I do sleep well at night, I am always woken up very early by my little boy and it feels like I can never catch up. It seemed to start after a particularly long and hilly walk I did on Nov 13th. Could it be some sort of exhaustion? I cannot find any explanation online or any 'condition' to explain this. This doesn't seem typical of WD symptoms either, where a gentle stroll is generally beneficial.

 

I'm scared to go out now. Each time I think I'll just try it again, the same thing happens! It has been going on for 5 months now! I'm scared I've damaged my brain irreparably and it's stuck like this. Perhaps I've stayed at home too much? I don't know what to do for the best. 

 

Do you have any insight or advice for me please? My husband says that 'waiting for it all to magically disappear is no longer an option' and I've no idea what else to do! I can't believe how my lovely life and marriage are falling around me.

 

I'm sorry for bringing my misery here but I have nowhere else to turn for help, which is also terrifying. 

 

I'm at a loss and alone. Do you have any ideas at all?

 

Thank you for reading,

R

[Altostrata]

Ripley, as I understand it, you are sleeping some but even mild exercise causes too much activation for you now.

 

Are you sensitive to light?

 

Can you do anything to strengthen your sleep? See 

 

It also sounds like you are not getting any practical support at home. Can one of your family members attend to your little boy in the morning?

 

You are going to have to be frank with your husband and manage his expectations. He needs to respect your choices and help you through a bad time.

[Ripley]

Hi @Altostrata

 

Thank you for your reply.

 

I think the 2 main questions are:

 

1. Do you think time will 'correct' this? 

I'm fearful of trying new supplements or doing anything to make things worse. A low dose of magnesium was activating so I just stick with magnesium chloride baths and pumpkin seeds and 1 fish oil capsule a day. So I'm left with time. 

 

2. Is it possible it's getting worse after 7 months of holding?

The levels of activity that trigger insomnia seem to be even less than they were and I'm now anxious and depressed often. The only thing that has changed is my heightened levels of fear around this. I'm trying to work out what's causing what, if that's possible.

 

I have noticed that the 'surges' do not always mean insomnia. I have often slept after having them. And I've also had insomnia without having had any 'surges'. So they're not connected like i previously thought. Not that I know what this means.

 

My husband does give me a lot of practical support but he is very upset and stressed by what's happening to me/us. He said it's "beyond heart-breaking". 

 

I expected to be able to slowly do more things but my limits seem to be shrinking. I really need to hope that time will improve things. I accompanied my husband last week on the school run (car/playground) and got insomnia! This is the level of activity I'm talking about. In December, I was still able to do the school run myself even though this problem appeared mid November.

 

I haven't noticed that I'm sensitive to light but that might explain why things seem to be worse now than earlier in the year I guess. Or perhaps you mean artificial light? I do need to stay off devices in the evening. 

 

I plan to take melatonin next time I go out and see if that helps. 

R

 

[Malbec37]

@RipleyI haven’t got too much I can advise specifically related to WD as I think you’re right to ask experts like Alto 

 

But what I do wonder is are you speaking to anyone on a regular basis for support? And I don’t mean your husband or a friend but someone neutral and professional like a Councellor? You’re going through a lot and you need to talk about it regularly and vent your feelings and difficulties 

 

Also you are understandably very anxious about what’s going on and this will definitely add to your problems...talking about it with a professional and others who understand will help with your anxiety. Also practicing a gentle mindful exercise for stress relief like chi gung (aka qi gong) will definitely help and you only need up for a few minutes per day and it’s super gentle 

 

There is also a nice WD group on a Weds evening that I sometimes attend that you may find beneficial...I do. Let me know if you want me to introduce you 

 

It sounds like you’re under a lot of pressure from your husband who sounds like a very caring man but doesn’t have any direct experience of what you’re going through 

 

I find it very hard to understand why you haven’t stabilised after so many months. 
 

it is very hard to get off mirtazapine and I feel your anger and frustration 

 

Wish I could do more to help 

 

Malbec x 

[Ripley]

Hi @Malbec37

 

I'm not talking to anyone professional about this and tbh I'm not sure it would help me. I find thinking and talking about all of this stuff just too upsetting and panic-inducing now. (Although it's lovely to hear from you Malbec!) I think I fare better with distraction and really try to do that as best I can. I'm just emailing Altostrata here as I think she's my best hope, as you say. But thank you for suggesting the group.

 

I think I may have portrayed my husband unfairly. He is totally by my side but is affected quite badly by all of this. I think he feels things have become psychosomatic and I need to go out more to get over this. I instinctively want to retreat and not keep alerting my system. Although I've been staying in a lot over these last months and it doesn't seem to be helping.

 

If I was making small progress in the right direction it would be so much easier to live with. I don't understand why it seems to be getting worse after a long hold?? 

 

I hope you're well. I saw you were nice and stable - I'm pleased for you, enjoy it!

 

Rx

[getofflex]

@Ripley I can see why it would be frustrating to not feel better after such a long hold.  I hope to encourage you in this respect.  Last year, I was on a pretty bumpy roller coaster ride of withdrawal early in the year.  I went on a 5 or 6 month hold.  I was very discouraged then, because for the first several months of that hold, I still felt bad.  However, by the end of the hold I actually felt much better.  For you or other people, it may take an even longer hold than 5 or 6 months to feel better.  Please don't give up.  Try reading the success stories.  This really helps me when I'm losing hope.  

 

I'm not talking to any doctors either about this.  I have little trust in doctors.  They got me in this mess in the first place, and their MO is to throw drugs at people (most of the time).

 

TIME is the big healer.  Only it takes so much more time than we would like.  We live in a culture of instant everything.  And this recovery is anything but.   

Edited April 18, 2021 by getofflex

[Malbec37]

@Ripleyi understand you know what you need best. But I’m certainly not talking about speaking to doctors as they have very little to offer just getting more support from somewhere.

 

Good luck with it all I’m hoping stability will eventually come 

[Altostrata]

15 hours ago, Ripley said:

My husband does give me a lot of practical support but he is very upset and stressed by what's happening to me/us. He said it's "beyond heart-breaking". 

 

He is sympathetic. Maybe he can understand it was the drugs that got you into this mess and there are no pharmaceutical silver bullets to get out?

 

15 hours ago, Ripley said:

I haven't noticed that I'm sensitive to light but that might explain why things seem to be worse now than earlier in the year I guess. Or perhaps you mean artificial light? I do need to stay off devices in the evening. 

 

I would try wearing dark glasses outside and maybe amber glasses while using the computer, plus dimming lights at night. See Light-sensitive? Try blocking out blue light

 

Some people are sensitive to light and heat, which aggravates symptoms.

[Ripley]

Hello again

 

I'm pleased to say I have a more positive update - finally. There has been a dramatic improvement in the levels of activity I can tolerate without insomnia. It's not back to normal levels by any means but it's enough that i can start living more normally again, which is a huge relief!

 

When I last wrote, I think that things were descending into an awful wave which culminated in my losing sleep entirely for a few days even though I was staying home. When this wave ended the improvement was very noticeable as my sleep returned and I was also able to manage small activities out that I couldn't before. Yesterday, I did 2 school runs and got 7-8 hrs sleep which is an amazing difference in just over a month! I still can't do longer walks/activities yet and I'm still cautious about what I do however.

 

I've noticed that my intense rumination on my mistakes has eased, which might be because I've seen improvements but I believe it was probably another WD symptom as it was very intense and largely gone now. I also don't get the brain/adrenaline surges that I used to when I was trying to fall sleep or, if I do, they're very faint. I can still get palpitations.

 

I started taking melatonin near the end of my wave (0.33mg an hour before bed) and I do feel this has helped to strengthen my sleep and I would encourage anybody with sleep issues to try it, if they haven't yet. I struggled to meditate (with the rumination) and have only done a little tai chi so I think the main difference is probably time. And I hope my tolerance levels will continue to increase with more time.

 

I'm a little nervous to write this in case I tempt fate and end up in another wave! But I hope it might be encouraging to others who might find themselves with similar problems. 

 

Thank you @Altostrata and @getofflex for your last messages to me, I wasn't able to reply at the time. I hope you're both doing well.

 

Ripley

[Altostrata]

Thanks for letting us know this good news.

[Malbec37]

This is really great and uplifting news @Ripley especially as I am struggling to taper the same medication and know how much it messes with sleep. 
 

Enjoy your new  found stability and thanks for the good news 

[getofflex]

On 5/20/2021 at 4:45 AM, Ripley said:

I'm pleased to say I have a more positive update - finally. There has been a dramatic improvement in the levels of activity I can tolerate without insomnia. It's not back to normal levels by any means but it's enough that i can start living more normally again, which is a huge relief!

This is wonderful news!  Aren't you glad you hung in there and didn't give up?  There is a video about how our nervous system healing is like finding the solution to a Rubik's cube.  We must twist and spin the cube in many circuitous turns to come to the final solution.  That is why we go through the windows and waves of recovery.  Are you familiar with the windows and waves concept?  It may help your husband and you to watch the following video:

 

 Video on Recovery from Psych Drugs

 

 Windows and Waves

 

Keep up the good work. I hope your husband is reassured by your improvement.  

Edited May 21, 2021 by getofflex

[Altostrata]

Hello, @Ripley, how are you doing?

[Ripley]

Hello @Altostrata

 

Thank you for asking after me. Things have been going well since I last posted and have continued to improve. I can do everyday levels of activity such as shopping and school runs without any problems sleeping at night and can get 7 or 8 hrs. In the morning, I feel quite sedated like I could sleep for 10 hrs if I didn't have to get up. I noticed my palpitations (ectopic beats) also settled by the end of June.

 

I've recently been doing a lot more such as longish walks on the beach (on hol) and round the park and round town and up and down hilly roads and I do lose some sleep at night after this. I think I probably get about 5 hours after a particularly active day so I still have a bit to go. But I'm able to live normally and not be housebound which is wonderful.

 

I'm thinking I shouldn't taper again until January 2022. Does this sound about right to you, assuming no major setbacks? 

 

In hindsight, I wasn't yet stable when I started my taper last year and the brass monkey method was too fluid for me also. I really need to get it right this time.

 

Hope you are doing well. 

[Altostrata]

That's promising. What drugs are you taking now, at what times of day?

[Ripley]

Morning @Altostrata

 

I take 6.6mg of mirtazapine when I go to bed around 9.30pm.

 

I take 0.33mg of melatonin about 1 hour before this.

 

To summarise, I've been holding this dose for 10 months (since mid Sept 2020). Between mid Nov and mid May, I had brain surges and insomnia after very low levels of activity so generally stayed home. Thankfully, over the last 2 months the surges have abated and I can live normally again. Lots of activity results in reduced sleep still but my limits are far greater than they were!

 

I'm hoping a hold until the end of the year will be enough before a very slow taper? The smallest decrement I can make without diluting is 0.15mg so I would start with that (2.3%) I think. Does this seem OK as a plan?

[Altostrata]

12 hours ago, Ripley said:

The smallest decrement I can make without diluting is 0.15mg so I would start with that (2.3%) I think. Does this seem OK as a plan?

 

Yes, certainly. Please let us know how you're doing.

[Ripley]

https://chng.it/wfVTKgfjg8

 

Hi

I hope this link works and connects to a petition requesting the FDA researches the long-term effects of mirtazapine. I saw it posted in the FB mirt. support group and signed it and thought others might like to. I hope it's OK to post it here.

X

[getofflex]

It would be great if you could put this in the forum “events actions and controversies.” You’ll probably get more signatures that way.

[Ripley]

Hi @Altostrata

 

I hope you have a happy New Year.

 

It has been a while and I just wanted to check in before I start tapering again and would appreciate any opinion you might have. I think I'm ready as I've been holding for 16 months now and living normally (for the last 6 or so) while avoiding high levels of activity, alcohol and caffeine. 

 

Sometimes I still get extremely faint brain surges when falling asleep although they're more like a brief pulse and I can barely feel them but I know they're decendants of the brain surges/zaps I used to get. I wonder if I need to wait for them to completely disappear before I taper again?

 

My only other main symptom really is significant sleep disturbance just before my period. A few months ago I would lose whole nights around this time but recently it's more like losing a few hours for a few nights. They're also a lot less painful than they had become last year. I wonder if this is wd normal too or if I need to give them longer to perhaps settle? I know I need to start tapering after this time in the month. 

 

Recently I tried to introduce a low dose vitamin d but at 200mg I had insomnia so my system still seems quite sensitive. Apart from these things I'm thinking I should start reducing? 

 

I'd welcome your opinion as to whether you think I'm stable enough to taper again. After last time I'm keen to avoid more mistakes if I can and am quite anxious about potentially upsetting things!

 

Thank you!

 

 

[Ripley]

Sorry, 200 iu not 200mg of vit d

[Altostrata]

Sounds like your sleep has stabilized; yes, you might sneak off mirtazapine. 

 

I used to have whole nights of insomnia before my period, and that was before drugs. I think maybe taking ibuprofen in advance diminished that and cramps.