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Sleeping Problems...


ana_22
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Since i got sick with POTS earlier this year (MARCH) i have had a problem with sleep.

At the start i was having trouble falling asleep, staying asleep and waking up very early (5am)

At the moment I have a little trouble falling asleep, but my main problem is staying asleep, i wake up every 2 or so hours. no matter what i do i cannot get a full night of sleep without waking up. Pre-pots i had no problem staying asleep! i would sleep the whole night through, sometimes even up to 10 hours. Its so annoying because this happened overnight, just like the rest of my symptoms.

Early on my dr gave me diazapam, even taking this the most i would sleep is 3 hours, so i stopped taking it due to its addictive tendencies.

SO its been almost 7 months without a proper nights rest!!! I think this could be impacting my bodies healing process as i know your body does its healing while you are asleep.

Does anyone else have problems similar to mine? is this indicative of a certain 'type' of pots? has this resolved for anyone? what has helped?

I am not on any drugs that would interfere with sleep. i only take 15mg of avanza before bed (this is meant to make you sleepy) and anyway i had the problem before taking avanza. i have tried hot baths, hot milk, chamomile tea and alot of other things i cant remember!

thanks :blink:

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Sounds like you need a sleep study. There are lots of things that can interrupt sleep. To my surprise, I have apnea, and wake less now that I"m treated. I still wake up at least twice a nite though. My new doctor things a lot of ans patients get adrenaline surges during sleep and wants me to try a low dose beta blocker just at bedtime. (I don't otherwise take bbs). I have yet to start, but maybe? But a lot of us have apnea, even if we don't fit the "typical" profile. And this can only be diagnosed with a sleep study. There are also other reasons for waking up, like periodic limb movement. Most sleep problems are relatively treatable. Since starting cpap, my migraines and neurological symptoms are tons better, I am less achey, exhausted, and cranky. I don't like wearing a mask, but I've gotten used to it. And it's so worth it.

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I am very sensitive to meds and some have a reverse effect on me. Just something to consider if you think the nighttime med might be playing a role.

Indeed I think when we are in a bad POTS cycle (as I am myself at the moment) our bodies become ultra sensative. Goodness knows I feel EVERY skipped beat of my heart lately. So what we may have been able to sleep through we now find ourselves up (for reasons unknown) at all hours of the night.)

I myself am in a cycle of 2-3 hours sleep and a 5 a.m. wakeful rhythm. But I just do what I did 20 years ago with my first baby. My mother told me that if I slept when the baby slept that even fragmented sleep would be refreshing. And I believed her, and it worked. So for me, I just go to bed earlier. Sometimes 8 p.m. if need be. Then I don't fret that I am waking up during the night. I trust my body will fall asleep again ... and it does.

For me its about working with what I have and trying to find a new pattern that works. When I was able to work, I would often need to nap on my lunch break. But I did and it kept me going.

If you like meditations, I made a ten minute one on sleep years ago and I'd be more than happy to email it to you if you are interested just send me an email from my profile link.

Sweet dreams.

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My 15 year old son was just recently diagnosed with POTS and NCS. He hasn't slept through the night for a couple of years except for the short time he was on Seroquel and that caused a whole host of other problems. We haven't found a prescription or OTC med that will help yet.

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Sleep disorders are common with dysautonomia. You may find a sleep study beneficial. This study would show what is going on in your sleep and would help your doctor to choose the best treatment for your particular sleep disorder.

I have problems with falling asleep, staying asleep, getting restorative sleep, and waking up. I'm all messed up. :) I've been diagnosed with insomnia, hypersomnia, and alpha-delta sleep. I've tried all sorts of different treatments, but what works the best for me is melatonin. I take 3mg each night before bed. My quality of sleep still isn't what it should be, but at least I'm sleeping.

If you haven't mentioned this to your doctor, I'd definitely talk with him/her about what kind of tests or treatments would be beneficial for you.

Rachel

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I have this problem too, big time.

My heart goes out to you! It really is crappy not being able to sleep -- especially since, this is probably true for you too, my POTS symptoms are SO much worse when I'm not well-rested.

I typically wake up every two hours, sometimes every hour. On average I wake up five times a night, and I usually stay awake for at least 20 minutes before being able to fall back asleep. Lately I've been waking up after sleeping for two hours (like you, I have no real trouble falling asleep the first time, just trouble staying asleep) and then not being able to sleep for the rest of the night; sometimes I can fall asleep again in the morning, around 6 am.

For me, part of it is because I have polyuria/polydypsia with POTS -- I'm careful not to drink anything for two hours before going to bed, but I still have to pee all night long! But even when that symptom is better than usual I still wake up every two hours.

I haven't found anything that helps, besides making sure I set aside a good ten hours to "sleep" each night, since I know I won't actually be sleeping the whole time. I've tried the usual things (like you said, warm milk, camomile, no caffeine) and I'm careful to use my bedroom only for sleeping (not watching tv, etc), and when I wake up in the night I don't put the light on or anything. None of it helps at all. Lately I've tried having a glass of wine in the evening, and although that helps my circulation a little, it hasn't helped me stay asleep. I just live with it. Which I know is not the best advice, but I haven't found anything else.

The only thing that helps me fall back asleep is basically boring myself back to sleep. I've memorized five poems and when I can't sleep I repeat them silently to myself over and over again until I fall asleep -- this keeps me from thinking about other things and ruminating on the day, which never helps. I do find it helps me fall asleep again faster, but it (obviously) doesn't keep me from waking up in the first place.

I really hope you find some relief for this, because it is terrible! If you find anything that helps make sure to let us all know. And take comfort in knowing that just lying there and resting is still good for your body, even if it's not the best.

jump

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Ana,

I have suffered from "insomnia" for as long as I can remember, it isn't actually insomnia for me, my circadian rhythm is screwed up. Sleeping pills don't work for me until my body says it is night-time. I took a trip through h*ll last year called sleep restriction therapy, and found that the body can actually take a lot less sleep than you think, doesn't feel great, but it can (4-5 hours a night and not all together for a month or more on top of several years of poor sleep.) I know it seems strange, but it actually helped me stress out less about sleeping and thus, sleep better. Sleep problems can be a self-fulfilling prophecy, the more worried you get about sleeping, the less sleep you get...

Try, just try, to relax. Are you tired, yes, does it make it worse, yes, but please don't worry. Get a sleep study done and rule out apnea.

While I am awake tonight, I will say a prayer for you, that you are sleeping peacefully.

Good night. :)

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Thank you to everyone for your replies! i am going to ask for a sleep study next time i see my dr.

thank you for the meditation offer earthmother, i will pm you if needed. i am currently using a white noise meditation and also have another meditation by ian gawler. ill see how it goes!

thankas again!

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