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darcyjohnson

A month of insomnia - desperate pls help!!

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I’ve got POTS pretty bad. Before this month I couldn’t walk more than about 600ms and I’ve been this sick for about 8 months - I’m pretty close to bedbound. I’m currently on metoprolol but nothing else’s and have had sleeping problems since I got sick - but they would usually effect me one in every 7 days or so. This month I think I have had about 3 days where I haven’t had bad sleeping problems. It’s not so much getting to sleep that’s the issues, I wake up at around 3am and cant get back to sleep after that. When I don’t sleep for at least 8.5hrs, the next day I can’t exercise because I’m too sick - so all month I have been getting progressively worse as exercise is the only thing that helps me improve.

my sleep hygiene is immaculate- I wear an eye mask, don’t go on my phone after 6pm, go to bed at 9pm every night and have the lights off for an hour before hand, I practice breathing techniques, I focus heavily on only thinking positive thoughts before bed so as not to stimulate my anxiety.

I have diazepam to take in an emergency, but it makes me quite sick and again, I can’t exercise the next day if I’ve taken it so it’s no long term solution.

i can’t wear earplugs because I stop breathing just as im about to fall asleep for some reason when I wearing them (as a side note if anyone knows why that happens please let me know)

I have tried all different kinds of antidepressants, melatonin and antihistamines, herbal teas and valerian. The herbal stuff doesn’t work and I’ve had really bad reactions to all the meds I’ve tried. 

I’m on a waitlist to see a specialist (there aren’t many here in Australia) 

please help - it makes me so sad to be loosing so much progress.

any advice would be great I just want some sleep 😔

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Melatonin is my go to when my insomnia gets bad. Hot showers before bed can help me too. It raises my heart rate and when I get out I am exhausted and just want to sleep. Every night I listen to an audio book and that helps me sleep. Generally it is Harry Potter read by Jim Dale. His voice is deep, British, and soothing to me. I usually fall asleep before a disc is finished and if I wake up I will replay it to fall back asleep. 

I know this is a weird suggestion. Considering everything you have tried, have you tried a stimulant to help you sleep? Our bodies can react weird and maybe having caffeine may make your body react the opposite way. 

I had a sleep study done right before my POTS was diagnosed. Everything was "normal". I did notice my REM sleep was only about 15 minutes during 6 hours. I suspect that's why I sleep 10-12 hours a night and still feel tired. 

Good luck with your specialist and I hope others may have some suggestions for you. 

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Are you able to sleep at other times?  There have been times where I get 8 hours just perhaps starting at 1 am and then seem to regulate back to normal later.  I think the quiet of night is nice when I’m overstimulated.  

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Check the effective times of your medication. I was sleeping really badly and waking up and staying awake. I'm on baclofen for muscle tension, this hangs around in your body for about 4 hours, then drops off. The doctor suggested taking a dose when I woke up in the middle of the night, I now do this and fall back to sleep about 20 minutes after the dose.

It is not perfect, but for the most part this helps. Speak to your gp, changing dosage / dosage times might help, always worth looking at.

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I also struggle from intermittent insomnia and it is proven that the less we sleep the worse gets the dysautonomia. When I am sleeping well then I feel good, when I am not sleeping then I cannot exercise etc - just like you describe. When I have nights when I wake up and cannot go back to sleep I find that it is better when I get up and read or do something for a while instead of lying in bed and getting frustrated. After an hour or so I feel tired enough to fall right back to sleep. 

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What do you do when you wake up in the middle of the night?  Do you start thinking?  Worrying?  Oh no, not again, why???  I've been there and done that, and it makes it more difficult to get back to sleep. 

Some people tend to have biphasic sleep, and will naturally wake up for about an hour in the middle of the night.  This supposedly used to be normal pre-electricity.  People would do quiet things like read or pray during their nighttime awakening, or even go out and chat with neighbors.  Try telling yourself that you are having a normal variation on sleep and that it is totally okay, and occupy yourself with something not very stimulating until you feel sleepy again.

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So it is not a "sleep onset" issue, like insomnia...but an early wake issue? May be the timing of your beta-blocker. Can you sleep at certain times? Earlier, like around 7:00PM? Later, around 3:00 am? I was diagnosed with a Circadian Rhythm Disorder: Delayed Sleep Phase Disorder. There are several other CR disorders as well. My brother has the opposite disorder: Advanced Sleep Phase Disorder and must in bed by 8:00. For me the whole thing is genetic, my mother and grandmother as well as my son have Circadian issues as well.

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I had early waking for 18 months and tried every prescription and non-prescription drug available.  I finally hit on mitrazipine which my primary care Dr ordered.  I selected it because I have hyper POTS and it has alpha blocking properties (see https://psychopharmacologyinstitute.com/antidepressants/mirtazapine-essentials-every-prescriber-know/ ). It works great and I have lowered the dose substantially over a couple of years.  It also didn’t give me tachycardia which other meds in the antidepressant class did.  When we upped my beta blocker I started having trouble again I found this article https://www.aarp.org/health/drugs-supplements/info-04-2013/medications-that-can-cause-insomnia.html and started taking extended release melatonin.  It helps quite a bit.  I still have rough nights that make the next day rough with a migraine but in general I sleep well.

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19 hours ago, mehganb81 said:

Are you able to sleep at other times?  There have been times where I get 8 hours just perhaps starting at 1 am and then seem to regulate back to normal later.  I think the quiet of night is nice when I’m overstimulated.  

I can’t  sleep during the the day - so after about 9.30am until about 8pm - when I try I get close and then start getting unbareble nausea and intense tremors 😔

again, no idea why

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6 hours ago, p8d said:

I had early waking for 18 months and tried every prescription and non-prescription drug available.  I finally hit on mitrazipine which my primary care Dr ordered.  I selected it because I have hyper POTS and it has alpha blocking properties (see https://psychopharmacologyinstitute.com/antidepressants/mirtazapine-essentials-every-prescriber-know/ ). It works great and I have lowered the dose substantially over a couple of years.  It also didn’t give me tachycardia which other meds in the antidepressant class did.  When we upped my beta blocker I started having trouble again I found this article https://www.aarp.org/health/drugs-supplements/info-04-2013/medications-that-can-cause-insomnia.html and started taking extended release melatonin.  It helps quite a bit.  I still have rough nights that make the next day rough with a migraine but in general I sleep well.

I did try mirtazapine - this was before I got diagnosed actually - it worked really well but for the month I was on it I gained 8kg with no diet changes so I’m hesitant to try again I don’t want to keep gaining so much weight!

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10 hours ago, darcyjohnson said:

I did try mirtazapine - this was before I got diagnosed actually - it worked really well but for the month I was on it I gained 8kg with no diet changes so I’m hesitant to try again I don’t want to keep gaining so much weight!

I took mirtazapine for a while when I first became unwell. I primarily took it for nausea and sleep. I lost a lot of weight when my POTS started so gaining that back was helpful for me, but when I started to get heavier than I had been pre-POTS I cut the dose from 15mg to 7.5mg and my weight stabilised. 

What dose were you taking? It may be that a lower dose may still help without the weight gain. 

B x

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I was exactly the same as bombshell.  I desperately needed to gain weight early on and now am at 7.5mg and I’ losing some of the 40 pounds I put on.  I needed about 30 pounds.  Exercise, even when I am exhausted beyond measure also helps.  Just a few minutes if that’s all I can do.

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@darcyjohnson - exercise is essential in the treatment of POTS, but you have to start slow and increase to your tolerance. If you are not good with standing than start with supine and sitting exercises and slowly increase the time you can stand. 

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Thanks pistol - I exercise on days that I have the energy to but I find that if I try and exercise on not enough sleep I just get sicker and either end up with a migraine or am even worse the next day. I’ll do what I can though. 

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Beta blockers can cause insomnia.  What is your HR and BP when you can’t sleep? Have you ever had a sleep study?  

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I did hear that recently. I’m afraid to go off them though without seeing a specialist - I had a bad sinus tachycardia episode before i got diagnosed that ended me in hospital and lead to my diagnosis - I got put on beta blockers in hospital. My primary care doctor doesn’t know anything about POTS but because I’m too sick to travel any further I have to see that doctor cause she’s round the corner. I’ve never had a sleep study no. I assume a specialist would refer me for that. My heartrate sits around 70-80 when I’m sleep deprived but sits around 60 normally. I don’t have a bp monitor but my blood pressure is always fine that doesn’t seem to be a part of my problems, in fact sometimes it goes up when I stand up.

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8 hours ago, darcyjohnson said:

I did hear that recently. I’m afraid to go off them though without seeing a specialist - I had a bad sinus tachycardia episode before i got diagnosed that ended me in hospital and lead to my diagnosis - I got put on beta blockers in hospital. My primary care doctor doesn’t know anything about POTS but because I’m too sick to travel any further I have to see that doctor cause she’s round the corner. I’ve never had a sleep study no. I assume a specialist would refer me for that. My heartrate sits around 70-80 when I’m sleep deprived but sits around 60 normally. I don’t have a bp monitor but my blood pressure is always fine that doesn’t seem to be a part of my problems, in fact sometimes it goes up when I stand up.

Yes you should definitely talk to a medical dr to switch up your medications. Your PCP could probably advise on both the beta blocker (even if he or she doesn’t know about POTS - it is a very common medication) and the sleep study. Even the time of day that you take the beta blocker could affect your sleep. The HR that you report between 60-80 is generally considered within the normal range even for people without Dysautonomia. It can be dangerous to be sleep deprived for a long time so it might make sense to see your PCP soon. 

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