To ask what you’re doing awake post-midnight? Part 2: Insomnia Strikes Back

[5YearsLeft]

Bit awkward to start this in the middle of the day, but I wanted to be able to link it on the old thread before it completely fills. Meanwhile, even though right now it’s not post-midnight, if you’re having a day-after hangover from insomnia, feel free to post. Whether it’s from poorly children or babies or pets or OHs, whether it’s grief or fear or anxiety or other losses, whether it’s work stress or home stress or just LIFE stress, we get it. You’re not yelling into the void; you’re sharing with people who have been stuck wide awake, too.

Hey, woke up after having a dream about chocolate ice cream?! Lol.

I'm also craving a fanta, despite drinking water, and trying to get back to sleep and contemplating whether to make the 4 min drive to the 24h Tesco Express to buy a Fanta.

Help? Lol.

Thank your @Tallisimo it doesn’t sound cheesy at all. It’s very comforting and thank you for the virtual hug too

I’ve accidentally deleted my message instead of posting threee times now. I give up.

@bloodywhitecat I’m so sorry. What a terrible situation.

@Quirkyme Get the Fanta! After all, it’s Saturday.

@MrsGlum I know you’re incredibly focused on the fact you made the wrong decision and it’s ruining your life but… what if YOU’RE wrong? I think you need to really look at your thought patterns. You lose absolutely nothing by considering, “The doctor saw something that made him think ADs would help me feel better,” versus, “I should never have taken them, he should never have given them to me, I didn’t need them, I don’t know what he was thinking.” You lose nothing if instead of, “This is ruining my life and I may never be well again,” you think, “Well, the science says, even though I feel terrible, I’m getting better on schedule, and there’s nothing that proves this has made me permanently worse.” And if you can’t think those things, maybe it’s time to talk about why. Because when you say some of things you say, I don’t want to upset you by telling you that it sounds so much like depression. And a lot of us have some minor depression, caused by our chronic pain or our insomnia or our grief. So you wouldn’t be alone. And you don’t have to treat it with medicine; it’s your choice. Just something to think about.

@bloodywhitecat sending you love and strength

@5YearsLeft unfortunately this insomnia feels very different to what I was experiencing before I went on the AD and then went cold turkey. Before, I could go to bed tired, get comfortable, drop off for a few hours snd wake up worrying about a certain situation. Sometimes I would get back off and sometimes I wouldn’t and I would go down and put the TV on but I always felt my brain could relax and switch off at bedtime and if I slept I would be refreshed.
This AD insomnia is totally different - even though I’m exhausted my brain just will not switch off - it feels constantly on and will not let me sleep. The palpitations are a new thing too - propanalol helps but I still don’t stay asleep for long if I do get off.for a while and the whole cycle begins over.
I do think you might be right about depression but only one brought on by my brain chemistry having been mucked about by the meds so I now don’t have enough of everything it needs to behave normally.
All of this came about because I followed a course of action a few months ago in relation to an original health problem which I should have handled differently. If I had I would never have got anxious enough to lose sleep and the GP to prescribe the meds. That health problem resolved but by then the ADs were ingrained in my system and started causing side effects which is why I came off quickly. I think I have shocked my poor brain into not being able to function normally, This is where my sense of terrible guilt and regret play in.

@5YearsLeft and it’s now become a vicious cycle because I end up having to take a sleeping tablet just to get some peace from
my brain.
I rarely ever get any real natural sleep and it
scares me that it will always be like this.
I do cling to the story of your friend’s recovery and hope I’ll get there too. But the regret that my life is currently so far from how it should be if I’d not used them just kills me.

@MrsGlum All of this came about because I followed a course of action a few months ago in relation to an original health problem which I should have handled differently. If I had I would never have got anxious enough to lose sleep and the GP to prescribe the meds.
This is what I mean. You’re only human. You seem to feel that you should have been able to see the future, to have pre-sentience, and to make nothing but perfect decisions and if you didn’t, then punish yourself with these thoughts that it’s all your fault. You were anxious, it was affecting your life, you made a choice to try to fix it, it didn’t work out. This may absolutely slay you, but if it were my DH in your shoes, he would seriously go, “Well then. This is unfortunate. Shame that medication didn’t agree with me. Guess it’s going to be a little while until I feel better.” And every time he felt anxious, he’d go, “Oh. Must be that damn medication still affecting me. Hunh.” I did joke with my therapist that DH might be a robot, to be fair. (It’s not autism - he’s just scary-calm). But I do think maybe there’s something between the two of you - his ability to just completely reason his way through it, take the science on board, and be nothing but scientific, and your inability to feel any hope, regardless of what the science says (that mirtazapine doesn’t cause lasting damage), and regardless of any other evidence. I recently had a medication give me horrible side effects - it made me use the loo constantly, it was painful, and I was peeing blood and other scary things, said the tests. Absolutely no one could tell me how long it would last, or if it would get worse, or whether it was some sign that my kidneys were going to be destroyed. I just had to go with the evidence I had - science said the medication took X amount of time to exit my system, my kidney tests were still all right, despite the blood in my urine, and even though I was really uncomfortable and it ruined my sleep (and my days), there was nothing I could do and it was going to take as long as it was going to take. It turns out “as long as it was going to take” was about 1.5 months. But I’m still here. And I’m still starting another medication, because my disease hasn’t gone away, so I have to keep doing things to try to make it more manageable unless I’m REALLY ready to give up and die a lot more quickly. You’re going through a truly terrible time, yes. But it’s hard to watch you also torture yourself, on top of it. All I can recommend is that you continue the counseling, tell them how you feel, tell them what your friends have said, tell them your fears, and I really hope maybe they can help you come up with some coping mechanisms. I’m just so sorry, because no one should have to live the way you’re living - already going through withdrawals, which are terrible enough, but then also wracked with guilt because they aren’t perfect and didn’t make the perfect decision and a huge fear that, no matter what anyone says, they’re ruined for life. No wonder you’re heartbroken and exhausted. I really hope you start to have a slight, even very, VERY slight, improvement soon, so you can see the light at the end of the tunnel is not a train coming toward you. You deserve that so much.

Sun’s up, thread is shut, and I’m packing like mad. Leave a message on the day thread whenever you want. No idea when I’ll next be around. If I’m not seen until Monday somehow (unlikely), I do promise I’m still alive.

@5YearsLeft thank you once again for your kindness and words of wisdom! They really do help so much. I know I have to have hope that I will get better. I’d love have a bit of your DH’s c’est la vie attitude! My fears are driven by a combination of the insomnia & anxiety and the damage the meds seem to have done to my feet and arms which affects my mobility. Hopefully these will all be temporary.
Your recent experience of meds sounds pretty horrific too. It seems to be a very fine balance between quality of life vs quantity of life for you. Your resilience and positive attitude towards your prognosis are amazing and make me feel very humbled in light of my issues!
I will hold your words in my head as I try to get to sleep tonight and keep watching the end of the tunnel getting closer each day.
Thank you.
Hope the packing and the move go smoothly
X

@mrsglum Sigh, tell me about it, re: quantity of life vs. quality of life. It’s incredibly difficult and a constant source of discussion with my therapist: how do you know when the pain is just too much? How do you know if it’s just the pain overwhelming you, vs. truly feeling suicidal? How do you know when it’s time to tell the doctor that you’re just too tired to try anything else? I don’t know.

I’m sure you said at some point, but how long were you on the ADs? It goes a bit like this, so says the science. (I just spent a few hours reading what medical journal papers I could get my hands on about AD withdrawal syndrome and mirtazapine in particular, and while this isn’t one of the medical papers, I thought this was a pretty good overview and recommends the three month rule: mentalhealthdaily.com/2014/07/21/remeron-mirtazapine-withdrawal-symptoms-how-long-they-last/ ). You took the AD. Mirtazapine is an atypical AD, but it still causes withdrawal syndrome. Like all ADs, it takes 3-4 weeks to get into your system fully to start with, so almost everyone who experiences withdrawal syndrome is usually taking it for at least a few months up to a few years, even. From there, it takes roughly six weeks after you completely stop the medication for it to stop with your brain chemistry. But here’s the thing. There’s plenty in the literature about the problems that people have to begin with being exacerbated by withdrawals and after withdrawals - their panic or depression is in fact worse than it was before. But let’s look at a symptom you mentioned you had - tenosynovitis in your ankle. Tenosynovitis is a condition that can heal completely, given enough time and rest, but it can take upwards of six weeks, and we know that it’s a rare side effect of mirtazapine. So if you put the math together, that’s six weeks for the mirtazapine to stop changing your brain and then you would need a minimum, MINIMUM, of six weeks of rest in the tendon for the synovitis to heal, so that’s… three months, and that’s an absolute minimum. Minimum three months. And that’s for a physical symptom. For the worry, depression, or insomnia made worse by withdrawal syndrome that’s not being treated… unfortunately, at the three-month mark, I would say to myself, “Ok. It’s not the mirtazapine. The worry or panic I feel is what I feel. Now I’m going to have to figure out how I want to handle it.” And start evaluating. But I wouldn’t worry about anything happening in your body or mind until the three-month mark. That’s it for my ability to research.

www.ncbi.nlm.nih.gov/pmc/articles/PMC181176/
www.karger.com/Article/Fulltext/506868
www.personalizedmedpsych.com/article/S2468-1717(16)30009-6/fulltext

I found the Karger one pretty helpful. It has a section on antidepressants.

@5YearsLeft you are such a star ⭐️ ! Thank you so much for doing all that research for me! How on earth did you manage to fit all that in with your packing and move preps?!
I had a look at the first one from the Mental Health Daily and it’s reassuring the way they are saying all things will pass eventually.
The three month mark does seem to fit with your American friend’s experience quite neatly. I really hope mine follows the same pattern or sooner! I was on the lowest dose 15mg for 9 weeks but my withdrawal was cold turkey so , for me the length of time on it probably wouldn’t correlate with the time to get over it, because i got all the symptoms that someone tapering would get gradually, in one fell swoop.
So I live in hope that it will all start to wind down in the next month or so as I’m currently at the end of week 6. The one thing that did scare me a little from the Karger one is the possibility of persistent symptoms. Just have to hold onto the hope that it won’t happen to me. 🤞🏻
It’s all so infuriating to think that I could have avoided all this grief doing my research on it before taking that first tablet. The pack would have gone in the bin unopened! But it didn’t and here I am suffering the consequences.
One positive thing to note today is that I have been able to cry actual tears for the first time since coming off it. I was terrified that the meds had mucked up something in that system, because despite my relentless despair I haven’t been able to properly cry. It’s such a good release.
As for your dilemma with continuing treatments I can’t begin to imagine what you must endure every day. The question must often be, if I stop now I will never know if the next one might have been the game changer. Such a heart breaking situation to be in, but I for one would love for you to be able to change your user name to 10YearsLeft or even 20 rather than in the other direction.
Well no doubt I’ll be back on here at 3am so I’ll see everyone then!
X

Hello and welcome to an INCREDIBLY late opening of the after-midnight thread. If you’re up because anything is standing between you and sleep, grief, anxiety, stress, pain, work, poorly children or OHs or pets, or insomnia, this thread is for you, and please, share whatever you want to.

Looks like it might be a slow Saturday night. They happen.

Uh, to be honest, I’m feeling ill and I was asleep. I’ve been packing all day and it’s messed up my fevers so I was absolutely freezing and had to put the electric heater on in the bedroom, and just… yeah. I still feel awful and feverish so no idea if I’ll just fall back asleep and burn through the bed.

@MrsGlum Ah yes, that is the ONE thing about the Karger. They define “persistent withdrawal syndrome” as anything lasting longer than six weeks, which is an extremely short window when, as I said, you consider most ADs take 4 weeks to start working. And mirtazapine is an atypical AD (it’s not exactly an SNRI, SSRI, MAO inhibitor, or anything else they list) so it’s maybe best to take the info on that bit from specific papers about mirtazapine, and they seem to say three months.

@MrsGlum Also, I really recommend that you start doing something to celebrate yourself. I have no idea what your financial situation is like. I really recommend that if you have a calendar on paper or on your phone, you mark today as “50% DONE!” since you’re at the end of six weeks, make some notes somewhere about how you feel, mentally and physically, (and 3 months is 12 weeks) and another six weeks from now as “PARTY DAY!”. And then if you use a paper calendar and cross off each day, or use a countdown app in your phone, and reward yourself at the end of each week with whatever kind of treat is in your budget or if your budget is very tight, then do something for yourself at home just for you that you never normally make time for

One of the benefits of the countdown app is that many of them will show it ticking down by the minute to your “event,” so when you’re feeling panicked or anxious or like you can’t go on, you can open the app, watch the seconds count down, and realize you CAN because you’ve just made it another minute closer to the goal.

And if, when it reaches PARTY DAY, you still don’t feel 100% how you did before, that will be okay, too. You can compare how you feel then to the notes you made today, so you can tell if you’re making progress, and then even if you’re not 100% recovered, you’ll be able to tell if there’s hope, and celebrate how much progress you’ve made in six weeks, even if it’s not the 100% you’d maybe like.

Just something to consider.

The DNs have just been again to give more buscopan and some midazolam to try to keep him comfortable, he seems better for it. We have just had an awful 90 minutes waiting for them, in some ways I think I am glad there is no sitter available. It is just me, him and our music by the light of the log burner. I hope this lot of meds see him through to daylight.

Sorry to hear about your oh bloodywhitecat, its horrible having to wait for DN to come.

I work in a care home and know how hard it is, to wait for someone to come.

I feel for the hospice nurses and the DNs, this is a big rural county and the infrastructure is poor meaning even short journeys take twice what they might elsewhere. The whole care industry is on its knees.

@5YearsLeft I’m sorry you’re feeling ill tonight. Good that you’ve managed to get a bit of sleep though.
I took a beta blocker at 8:00pm tonight plus had a couple of glasses of fizz during the evening. Then took a nytol at 1:00am thinking I’ll have a decent sleep now. Not a chance! Woken up at 3:00am feeling really yuk & buzzy from the nytol. Feet throbbing and heart pounding again so took another dose of propanalol and here I am again waiting for it to work 🤞🏻
Woke DH - told him how scared I am. He gave me a hug, muttered a few platitudes and slipped back into the deep comfortable sort of sleep that is a distant memory to me. Determined not to take a sleeping tablet though.
I like idea of a reward calendar. I can’t imagine having a party now but in 6 weeks time I really hope I will. I do already have a little note page on my phone where I’m keeping a daily log of the meds I’m taking, the symptoms I’ve got snd the feelings I’m experiencing. These make for darker and darker reading as time goes on.
I keep looping back to how stupid I was to use the mirtazapine when i really didn’t need it. I want to go up to that previous version of me about to put the tablet in her mouth snd knock it out of her hand before she does it.
If only..,
Regardless of whether I should or shouldn’t be blaming myself, the fact remains, certainly in the short term, if not longer, that it has ruined my life.
A friend told me today that she’d been prescribed Mirtazapine but after taking one tablet which made her feel weird, she just threw them out. I told her she’d dodged a bullet that day.

Mrsglum

I have just come off my sleeping tablets weened myself off it. So sat here wide awake with a cup of tea.

@bloodywhitecat I’m sorry for what you are going through with your DH. A truly horrible situation for you both.
I hope he is comfortable now. When do you get a chance to sleep?

@bruce43mydog which ones did you take?
I’ve got Zopiclone, I hate and love them in equal measure!

How long can a human brain go without natural sleep before it goes pop? I haven’t had more than about 10 hours of real unmedicated sleep in the last 4 months 😢

[quote MrsGlum]@bloodywhitecat I’m sorry for what you are going through with your DH. A truly horrible situation for you both.
I hope he is comfortable now. When do you get a chance to sleep?[/quote]
I don't know. I did get a couple of hours earlier on but I haven't slept properly in weeks and weeks. I was never a great sleeper anyway. I have Zopiclone too but am waiting until he's gone now to use them again.

You weren't stupid to take those meds, we do what we do armed with the information we have at the time and sometimes we get it wrong, hindsight is a wonderful gift.

@bloodywhitecat that must be so hard 😢
I’m thinking of you.

Thanks for saying that about the meds - I know it’s illogical to feel stupid but it still niggles away at me that only I created the situation I am in now. Yes GP prescribed them but I made the choice to take them. I should have done my research And yes 20/20 hindsight is wonderful isn’t it!

@bloodywhitecat I’m so sorry you’re dealing with this. And I do hope OH was able to have a restful night with the medications. I totally understand how you can feel for the nurses and deeply appreciate them but also struggle with the failing infrastructure that makes it all so difficult.

@MrsGlum Years. Some with persistent insomnia have often not experienced “natural sleep” without medication in years. The issue is not natural vs unnatural sleep. It’s just whether you sleep at all. With NO sleep, you won’t last long, no. With medically-assisted sleep, it doesn’t make any difference. You’re still asleep. And there are plenty of people who survive for years on a few hours of broken sleep each night, which I admit is not ideal at all, and can lead to a lot of health problems, but not death, nor a complete mental breakdown. I’m so sorry and do hope the sleep works out.

@bruce43mydog That’s so tough! I hope you feel better soon!