Ripley: mirtazapine withdrawal and reinstatement problems

[ChessieCat]

It takes me about 2 weeks to adjust to the clocks changing.

 

What was 10 pm is now 9 pm which is the time you need to go to bed.  The only thing I can think of is to just go a tiny bit later each night until you get to 10 pm.  But, if you have to go to bed at 9 pm to get a decent night of sleep and you cannot delay it, then it would be better to get the sleep than to suffer.

 

And if you don't get good sleep how you feel will end up affecting the rest of the family.

 

[Ripley]

Hi ChessieCat

 

Thanks for replying. I think you're right. As I read over what I'd written, I realised I'll have to go to bed an hour earlier until the clocks change again! I was hoping to somehow carry on as I was as the times suited me and my family.

 

Your suggestion of changing the time incrementally seems highly sensible but I don't seem to have enough wriggle room for this to be painless. I'm so sick of the insomnia and the impact on my life - and those around me. I should probably count myself lucky that I have an option that will (hopefully) work though.

 

I hope you are doing well CC.

[Ripley]

ChessieCat

 

You mention it takes you 2 weeks to adjust to the clocks changing, does it interfere with your sleep? Or does it exacerbate whatever symptoms we suffer most from normally?

 

R

[ChessieCat]

It's always affected me even before ADs and WD/tapering.  It probably does affect my sleep because I feel tired and "out of whack" for the couple of weeks until my body adjusts to the time change.  And it happens both ways, not just when the clocks go forward (ie losing 1 hour sleep), but when they go forward I think it affects me a bit more.  I'm 63 and we've had daylight saving in Australia since I was in my early teens, but I think it has affected me more since about 30 years old.

[Ripley]

That's interesting ChessieCat. I see you had daylight saving on 4th October in Australia, so I hope you're settled again now.

 

I searched on this site and found others affected by the clocks changing and there are apparently more heart attacks in the 2 or 3 weeks after a change! So these changes to our circadian rhythm definitely have an effect.

 

I actually think my problem is more related to the mirtazapine though. I've never had a problem with the clocks changing before and it's relevant now because my sleep isn't behaving as normal to start with. I'll have to work around it...  I just hope it won't always be like this...

[Ripley]

Hi

 

I wonder if anyone might have some words of encouragement for me or advice. Lately I've been sleeping as badly as I was back in Jan/Feb when this whole business started. I tallied up my nights of between zero and 2 hours of sleep and found that I've had 45 of these nights since Jauary, which seems a huge amount to me. Perhaps it's not that bad for WD? It's just under 15% in total but it feels punishing. (Thankfully a good 50% of my nights have been 7hrs or above and the rest have fallen somewhere between the two.)

 

I recently stopped eating food with ginger and going for longish walks with my husband as both things gave me zero nights. Missing our walks has felt pretty miserable as I felt normal and enjoyed being in nature. I consume no alcohol or caffeine or supplements apart from 450mg EPA/DHA fish oil and 200mg vit. E. I go to bed on time (9pm), don't go out or have screens in the evening. I've held my dose at 6.6mg of Mirt since 17th Sept.

 

I guess I'm saying that I don't know what more I can do to settle this system of mine and I feel it must be badly damaged. I would have hoped the zero nights would be on the wane by now, after almost a year, is this unrealistic?

 

I feel my battery is completely flat and my husband has said I'm "a shadow" of who I used to be and he's right. Some days, I can barely make it through the day I'm so tired. Tapering off this drug seems like a huge feat at the moment. Sorry for my downer of an update. I think I feel the need to record my experience, even if I'm telling strangers. It's so isolating to not be able to turn to a doctor (or anyone?!) when you're suffering like this. I have some lovely friends and a supportive husband but what can they do? I'm mindful of not banging on about sleep all the time! 

 

I've just remembered, all year I've had an elevated temperature of 37.3, rather than 36.8. Could this mean anything? I had Covid back in March (cough/sinusitis and 37.8 temp) but seemed to get over it fine in about 3 weeks (took no meds for it). But I wonder if it could be impacting my ability to recover from WD in the longer term? Other than that, I'm out of ideas.

[Malbec37]

Hi @Ripley....Sorry that your sleep is bad again and yes that is a lot of sleepless nights to go through in one year! To any normal person not in withdrawal it would be tough to go through just one night of 0 sleep and try to face the realities of the next day but in protracted WD sadly we have to get used to so much of this. I do feel for you as I am in much the same situation...I think the problem is we have very sensitive and easily stressed nervous systems due to the WD of mirt so any number of things can affect us in ways we have never experienced and often the number 1 thing affected is sleep which if course makes everything else harder

 

I know you're trying your very best with all of this and I totally understand about not wanting to bang on about sleep all the time as I feel the same but it's just so hard when you're not getting enough and so easily affected by stress 

 

I guess as regards the 0 sleeps still being around after one year then it seems likely that your sleep is going to be erratic whether you hold or whether you continue to taper mirt...I've been holding at 15mg for 11 months now and my sleep is often a total mess and I have no consistency with it at all...I know others in the same boat unfortunately. So maybe it would be best to continue to taper regardless of there being nights of 0 sleep...just a thought but someone once said to me that he never waited around when tapering even when suffering with WD symptoms and poor sleep as it never stabilised fully so he just kept going until he was eventually off 

 

I think for me a lot of the stress is still being on the mirt whilst suffering so much 

 

Sorry I can't be of more help but you are doing all the right things and we are all here for you!!!

[Ripley]

Hi Malbec

 

Thank you as ever for your reply and empathy. 

 

Did your friend's sleep finally settle when he got off Mirt? I find the idea of just pushing through too much for me and I don't really have the energy left for another year (or more) like this one. So I'm really hanging my hat on the wisdom of this site and choosing to believe that things will settle down if I give it enough time. It's shocking how different my system is now compared to before. I do worry about needing a general anaesthetic or chemotherapy in the future and not being able to manage it. But I try to push those worries aside for now and take it one hurdle at a time. 

 

Best wishes to you my friend. 

[Ripley]

Hi @ChessieCat

 

I wonder if there is any advice or reassurance that you, or any other moderators, might be able to give me? I have held my dose at 6.6mg of Mirt since 17th Sept and I'm pretty sure I haven't done anything else to warrant a setback but my sleep is very bumpy, which I find hard to cope with. Here is this month so far:

 

25th Nov - 0 hrs

24th Nov - 0 hrs

23rd Nov - 9 hrs

22nd Nov - 0 hrs

21st Nov - 7 hrs

20th Nov - 7 hrs

19th Nov - 4 hrs

18th Nov - 7 hrs

17th Nov - 1hr 

16th Nov - 8 hrs

15th Nov - 8 hrs

14th Nov - 5 hrs

13th Nov - 2 hrs (too much walking?)

12th Nov - 7 hrs

11th Nov - 6 hrs

10th Nov - 6 hrs

9th Nov - 6 hrs

8th Nov - 6.5 hrs

7th Nov - 0 hrs (too much walking?)

6th Nov - 6 hrs

5th Nov - 7 hrs

4th Nov - 3 hrs (v light)

3rd Nov - 9 hrs

2nd Nov - 3 hrs (ginger?)

1st Nov - 6hrs

 

I know I'm lucky enough to have some good nights here but the 0-2 hrs really knock me sideways, and they happen often enough that I don't really recover in between. I'm sure I used to recover quicker earlier in the year.

 

It has been up and down like this really since the clocks changed. Prior to that, it had been more consistently 7hrs a night (after the zero nights that led to the updose in Sept). 

 

Do you think I need to updose again? (I wonder if I should have made any reductions at all this year?) Obviously the last couple of nights have been distressing as my sleep seems to have disappeared completely like it did back in January. Is it normal to have such dramatic setbacks like this for no apparent reason? It makes me wonder if I will ever stabilise or if I've done too much damage. 

 

Is it worth stopping my fish oil tablet? Even though I've taken it for months? I stopped drinking my decaf tea on 4th Nov when I found out that it's still 0.2% caffeinated. Could I have withdrawal from that?? I feel like I'm clutching at straws here!

 

The fear and anxiety about going to bed is back again and my husband has suggested I get hypnotherapy for this. Do you think that might work or is it all chemical?

 

I've noticed loud noises in my head occasionally in the night, which I think are a form of brain zap? I also become obsessed by sleep and pour over my diary looking for answers, which I think is anxiety and rumination at work. I have diarrhoea and low appetite so perhaps this is just all WD? I berate myself for being so stupid and ignorant and getting myself into this mess. 

 

So,...here I am. Still stuck and not sleeping. Any suggestions you have I'd gratefully receive. I'm surprised I'm still getting zero nights for no reason, which makes me worried this will never end and I'll get some other horrible disease as a result. 

 

[Ripley]

Well, last night was much better. So hoping for better days ahead, as ever.

 

I'll be signing off for a while. 

 

Good healing to everyone and a big thank you again for this site and the generously shared wisdom.

Rx

[Ripley]

Hi @Altostrata

 

Please could I ask for your advice again? I'll try to be brief.

 

Should I do an updose? And if so, how much? Or do I need to hold? I've been holding at 6.6mg Mirt since Sept 17th.

 

My sleep this last week is as follows:

 

29th Nov - 1 hr

28th Nov - 7.5 hrs

27th Nov - 0 hr

26th Nov - 8 hrs

25th Nov - 0 hr

24th Nov - 0 hr

23rd Nov - 9 hrs

22nd Nov - 0 hr

 

I've given info. for the whole of November a couple of emails above if you need it. But this last week things have been the worst.

 

I can only guess that my system didn't like the slow tapers I made in the summer (14% over 3 months then 2% updose to 6.6mg). Do you think this is it? Or could it be just a wave?

 

My sleep hasn't been as bad as this since before I reinstated the drug in January so I'm scared. Back then, it took 2 months and then I had a radical improvement in sleep. And now, it has been about 2 months since I had to updose. So I'm very worried it has changed back for the worse. It is very hard to bear. 

 

Please could you advise me what to do? I can't believe the mess I'm in. 

 

Thank you. I will copy @Gridley too as I would really appreciate some help. I hope that's ok. R

[Altostrata]

Did you make any changes towards the end of November? Had a little alcohol?

 

Are you using a liquid to taper? How old is it?

[Ripley]

Hi @Altostrata

 

I've had no alcohol (or caffeine or new supplements) to explain the insomnia and my liquid is in date and I'm very careful about sleep hygiene.

 

It was alarming to have such a nasty spell with no apparent reason and I guess the message is just to keep holding. (I didn't updose in the end as it had been almost 2.5 months since a change.)

 

I've had improvements and I'm praying it's settling down again now. I would do anything to avoid that sleeplessness again. 

 

 

[Altostrata]

How did you get along with magnesium?

[Ripley]

I haven't tried magnesium @Altostrata as I've been wary of trying things really but I will give it a go when things feel more settled. I do have Epsom Salts baths though.

 

Last night was another zero night. I think because I walked around the town and shops with my husband and had a lovely, 'normal' day yesterday. I used to be able to do this in WD without problems but it must be too much for me now, which makes me feel low. (I hadn't been out for several days prior to this.)

 

My sleep is very binary. It either happens or it doesn't and there's not much in between. A lot of people seem to have cortisol or adrenalin surges in the night which obviously interfere with sleep and other symptoms but I don't. I usually feel very calm and still so I don't understand why sleep doesn't happen? Last night, I felt pretty sleepy at bedtime. It's like a light switch that may or may not work.

 

I have noticed lately that when I should be falling asleep I sometimes get a 'blocked' sensation in my brain. I don't know if it's a form of dull brain zap as it only lasts about 3 seconds but it is definitely blocking sleep onset. This is the only indication I have that sleep won't happen. 

 

Does any of this sound familiar to you as it feels a little unusual?

 

Normal life felt possible again yesterday and this morning it feels hijacked again. 

 

Thank you for your time and reading this. I'd be grateful for any thoughts you might have. R

[Altostrata]

13 hours ago, Ripley said:

I have noticed lately that when I should be falling asleep I sometimes get a 'blocked' sensation in my brain. I don't know if it's a form of dull brain zap as it only lasts about 3 seconds but it is definitely blocking sleep onset.

 

This is an unusual description but many people have found something happens when they are about to drift off. This is because your nervous system is sensitized and it's sounding an alarm when you are relaxing, it wants to you be alert to danger. You can soothe it by playing very soft music while you're sleeping. See

 

Music for self-care: Calms hyperalertness, anxiety, aids relaxation and sleep

 

Melatonin for sleep: Many people find it helpful

 

Also, if you're getting too much light at night, it can keep you from sleeping. You may wish to dim all the lights a couple of hours before bedtime and avoid using the computer or phone:

 

TV or computer use in evening can disrupt sleep: Bright light signals the brain that it's daytime

[Ripley]

Thank you @Altostrata

I hope you are keeping well.

[Ripley]

On 12/4/2020 at 3:18 AM, Altostrata said:

Did you make any changes towards the end of November? Had a little alcohol?

 

Are you using a liquid to taper? How old is it?

 

Hello

 

Perhaps I could ask for your thoughts on a couple of things please. On 4th November I started a new bottle, which tasted and smelled stronger than usual (same manufacturer/ packaging/ concentration). I checked and saw it had a different batch code (exp 2023). The new bottle I've just ordered and my 'spare' are also now the new batch. All my previous ones were another batch (exp 2022). 

 

Anyway, I had that bad run of zero nights 2 weeks after starting the new batch and things have been very rocky since. Do you think it could be related? I had some bad nights before the 2 week mark but I'd also done some longish walks so attributed them to that. Would I have had more immediate and consistent problems from a change of batch? Or could it be more irregular like this do you think? 

 

Yesterday, I went to the local supermarket for a few things with my little boy and had another night of complete insomnia. It seems incredible that a half hour round trip in the car can do this but I don't know what else it could be? I've been in all week so far and my sleep has been improving up to that point. I even felt that 'blocking' sensation getting weaker and not stopping sleep. 

 

This sensitivity to activity is also a recent development and since the new bottle. I haven't had these problems before and have done the weekly shop and walks and normal stuff all year until recently! 

 

I have not changed dose since Sept 17th or had any alcohol or caffeine or other drug. 

 

I feel like I'm going slightly crazy trying to find answers and I'd be grateful for another opinion. I'm now scared to go for a walk round the block! 

 

Could it be cumulative exhaustion making everything worse or should I try to track down my old batch of drug (which will prob expire before the end of my taper at this rate anyway)? I've also had heart palpitations these last few days, which are new. I wonder why they've started up now. Is that something else that should settle down? 

 

Sorry for all the questions. I'm trying to approach things as rationally as possible but I feel like I sound crazy. Could this all still be a delayed reaction to my taper in the summer (in signature)? Wouldn't that be improving rather than getting worse by now? That's everything I can think of. Sorry it's so long. I'm very fed up with all this. 

 

Thank you

 

 

[ChessieCat]

26 minutes ago, Ripley said:

On 4th November I started a new bottle

 

Q:  How long had the old bottle been opened for?

 

With a lot of prescription liquids there is a discard "x" amount of time after opening instruction.

 

From https://www.drugs.com/uk/mirtazapine-15mg-ml-oral-solution-leaflet.html

 

5. How to store Mirtazapine Oral Solution
Keep this medicine out of the sight and reach of children.
Do not use this medicine after the expiry date which is stated on the carton and the bottle. The expiry date refers to the
last day of that month.
Do not store above 25°C.
Do not use the bottle more than 6 weeks after opening. Make a note of the date of opening of the bottle.

[ChessieCat]

Q:  Have you missed a dose or accidentally taken a double dose?

[Ripley]

Hi @Chessiecat

 

I use the bottles for 6 weeks only as stated and store them properly. So the old bottle was only open for 6 weeks. The new one is straight from the chemist.

 

(Ironically, before WD I used a  bottle a lot longer than 6 weeks and had no problems. I was casual then in a way I no longer am!)

[Ripley]

2 minutes ago, ChessieCat said:

Q:  Have you missed a dose or accidentally taken a double dose?

No I haven't unfort

[Ripley]

I feel such despair today and just about ready for a care home. It's like I have an invisible tap that's been draining the life out of me. I'm totally spent. I don't think I can manage another zero night. How does a healthy person end up like this? It's staggering. I couldn't have imagined this in my wildest dreams. I'm heartbroken. And my heart goes out to anyone else who is suffering through this. No one deserves this. It's like running round a maze looking for what to do.

[Altostrata]

What effects do you feel after you take mirtazapine?

[Ripley]

I'm not really aware of any effects @Altostrata. 

 

I take it before I turn out the light at bedtime, at the same time every night.

 

Sometimes (used to be mostly), I fell asleep. Sometimes I simply don't. So it does NOT feel sedating at all. And I mentioned that 'blocking' sensation previously that I've had lately.

 

By 3am (with no sleep) I can feel nauseous and anxious but I think this is because I'm very tired and worried about the next day. These feelings remain all day and I'm usually tearful. When I was sleeping well, I found it difficult to get up in the mornings, which I think was the mirt. (Not happened in a while.) So it only seems sedating after I've fallen asleep. 

 

The recent palpitations now happen throughout the day and night. I've had an elevated temperature of 37.3 all year. But I usually feel very cold. Have worsened PMS.

 

I've never really felt mirt 'do' anything, although initially I felt the sedation. And I've gained a stone in weight. I think that's everything. 

 

Thank you for considering this.

[Ripley]

Forgot to mention that doing normal activities seems to result in  complete insomnia now. Have had trouble with walks and even going to the supermarket recently. 

 

It's all putting a huge strain on my marriage and my little family. We have no outside support to help.

[RickyIsHealing]

strange that @Ripley , sometimes i going for a jog and i think it helps me sleep more sometimes . last week i was having around 6 7 hours sleep !even slept for 8 hours one night , this week im back to 4 hours broken sleep  feels like this will never end if im honest ! 

[Ripley]

Yes, I seem to have a paradoxical reaction to activity now! Your response is much healthier @RickyIsHealing. And the fact that you are completely off Mirt and were sleeping 6 or 7 or even 8 hours last week is really very good. I know the 4 hours of broken sleep is hard and but I think you're in a very good place for things to settle down and be ok. And hopefully soon x

[RickyIsHealing]

@Ripley yeah I agree , my main thing right now is my mood , I feel so miserable and like urghh just go away now let me have a tiny bit of happiness please , like I'm not even level I just feel sad and miserable 247 , hoping for some improvement soon! God bless x

[Ripley]

Hello

 

I just wanted to give a quick update, and it's both good and bad I think.

 

So, I've been holding for almost 5 months now and the good news is that my sleep has settled down and has been much better since the New Year. It was in November that things were very bad. The palpitations, which came on in mid December, have largely gone too so they lasted about a couple of months.

 

The less good news is that I still seem to have a problem with physical activity. Yesterday, I drove to some local shops and was back home in half and hour but had a night of no sleep as a result. I've really been taking it easy and not going out much since December and been feeling a lot better. The insomnia problems seem to start if I go out for a walk of just 15 minutes. 

 

I understand that exercise and exertion can be too much for the CNS but it seems unusual to have a problem with even gentle walks. 

 

Anyway, I don't think there are any answers really. It's just what my system is doing and I have to hope and pray it's not permanent. 

 

So overall things are much better but I have some way to go before I can start tapering again. The whole idea fills me with fear and dread at the moment! I'll see where I am in another couple of months. 

 

Wishing everybody well,

Rx

[Malbec37]

10 minutes ago, Ripley said:

Hello

 

I just wanted to give a quick update, and it's both good and bad I think.

 

So, I've been holding for almost 5 months now and the good news is that my sleep has settled down and has been much better since the New Year. It was in November that things were very bad. The palpitations, which came on in mid December, have largely gone too so they lasted about a couple of months.

 

The less good news is that I still seem to have a problem with physical activity. Yesterday, I drove to some local shops and was back home in half and hour but had a night of no sleep as a result. I've really been taking it easy and not going out much since December and been feeling a lot better. The insomnia problems seem to start if I go out for a walk of just 15 minutes. 

 

I understand that exercise and exertion can be too much for the CNS but it seems unusual to have a problem with even gentle walks. 

 

Anyway, I don't think there are any answers really. It's just what my system is doing and I have to hope and pray it's not permanent. 

 

So overall things are much better but I have some way to go before I can start tapering again. The whole idea fills me with fear and dread at the moment! I'll see where I am in another couple of months. 

 

Wishing everybody well,

Rx

 

Hi Ripley...good to hear from you. Good news indeed that the sleep settled right back down, what a relief! But yes I hear you about the exertion and impact of that on you CNS. Have you tried doing the walking or any exercise earlier in the day? It really does seem strange that even a small amount of exercise can have this effect on your CNS and lead you to not sleep

 

Maybe you need to do things to really calm the CNS down and reduce the stress it clearly feels from exercise? Things that help me a lot are chi gung (lots of videos on YouTube) gentle yoga, restorative yoga poses like legs up the wall pose, CBD is good for a calm nervous system...sleep hypnosis, meditation, no screen time after 9pm

 

I'm sure you've heard all of these things before but it seems to me if the CNS is so upset by a short walk then perhaps it can be calmed back down again so you can sleep that night 

 

Anyway I'll leave it with you but good to hear things are mostly better and I'll keeping touch 

 

Malbec x 

[AdviceNeeded]

The exercise/activity thing is a bit of a strange one. I tried some slightly more intensive exercise last week (nothing major, just a few notches up from light exercise) and I'm pretty certain it made me feel agitated the following day... maybe even followed by a night of restless legs, it wasn't too bad (I wasn't up all night pacing).  I'm going to try it agian and see what happens, I understand we need to be kind to nervous systems but I want to work out were my limits are. I'll let you know the results.

 

I'm sure, given enough time, this will pass, there's a few people in the success stories that appeared to have suffered with hugely dysregulated/sensitised nervous systmes that made full recoveries, it just took time.

[Ripley]

Hi @Malbec37, thank you for your message and suggestions. I could probably do more to calm things down like trying meditation and magnesium. To be honest I'm just doing home-schooling everyday, which I wouldn't describe as particularly calming! 

 

Thank you for your message @AdviceNeeded and encouraging words. Like you, I keep trying to find my limits and so far I've been disappointed in them . I think 'holding and hoping' is my mantra at the moment.... I didn't have this problem until November last year so I'm hoping it's another phase to just get through. Another life-limiting one unfortunately.

 

Rxx

 

[ChessieCat]

It may not be only the physical exertion.  Being out and about, especially after you have been staying in "safe" surroundings, can be overstimulating.  This could be from traffic, noise, light, crowds, having to think/make decisions.  When out and about many of the decisions are "on the spot" decisions/thinking like we have to do when driving and when around people having to change direction so we do not bump into them.  Even if each of these is minimal, together they add up.

 

When we are in familiar surroundings and situations we have a lot of foreknowledge so our brain is not having to make as many immediate decisions.

[Ripley]

Hi @ChessieCat

 

What you're saying makes a lot of sense and I think you're probably right. I think I've got myself in a bit of a Catch-22 situation. I think I needed to rest my system but now my system is perhaps a bit too used to resting! (It has been very easy to stay at home with full lockdown here in the UK with even our children at home from school. I'm practically a recluse!)

 

I guess I should keep trying to go out and perhaps this will increase what I can tolerate. Do you think this might be better than just waiting and hoping it will improve? It's hard to know. I guess I'll have to keep trying.

 

Thank you for your message. I hope things are going well with you.

 

X

[ChessieCat]

I have been in a similar situation with being at home for many months except that I have been alone.  For me I found it best to do short trips to places where I was familiar and to do it at the time when I felt reasonable okay.  I also limited what I did.  So instead of going to the shop to buy lots of things I went in and bought a few things.  I also tried to go at times when I knew it was not too busy.  This helped me to get used to being out and about again.

 

If you make it that what you are going to get is not essential (an excursion rather than a task), if you happen to get there and you cannot find parking easily or it is busy or anything else that is a bit stressful, then it will not matter if you do not achieve your goal.

 

And yes, thank you, things are going reasonably well for me.  I returned to work a few weeks ago after being away from my volunteer job for 10 months so that has taken some getting used to.