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Need Suggestions For Sleep


Rose11

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This is a common problem for POTS patients--and probably the general population to some extent. There are many things you can try to change from eating habits to use of light, etc that may help. You could search on-line for "sleep hygiene" to find tips and techniques that might help.

What helps me--chamomile tea, breathing techniques for relaxation, more exercise during the day and more exposure to natural light during the day, going to bed at the same time and getting up at the same time each day, taking a cool shower before bed, room as dark as possible.

If trying many different non-medical things hasn't or doesn't help, talking to a doctor might be a good next step. Some POTS patients do take sleep aids.

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I have a lot of trouble with this, the few things that I have found that helped are getting up earlier in the morning and mindfullness, really just watching my thoughts at night and trying not to participate in them, and doing slow breathing techniques untill I feel a sense of my thoughts slowing down. Typically my mind always seems to run at night so that has been my main focus to slow those thoughts down.

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I've been fighting some major insomnia for a couple weeks, getting to the point of "I know there's nothing on the walls, but I'm seeing something." I've been changing everything that I can think of. One thing I've started using is my iPad, and a white noise/sleep sounds app that I downloaded. I've always liked the sound of rain and storms, so when it is time to go to bed, I start it up, and put it right by my pillow. I can set it for hours or minutes. Usually about 15 minutes I can start relaxing, and while I may not go completely asleep, I do feel a bit relaxed.

I also have started using an electric throw blanket on my bed, and have it going. I have EDS, and my legs are some of the most painful things I deal with. The warmth of the blanket, topped with a heavier blanket, help me relax too. I'm looking at purchasing a weighted blanket to help this as well. It's like a big hug, and relaxes me.

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I have always had trouble going to sleep my mind is too active and I do the worrying thing ! I do know if I take my florinef too late in the morning that will have more of an effect on me . I have made a huge effort to get into sleep hygiene and I am getting better at clearing my mind through breathing techniques and most nights I am now asleep within an hour or so compared to the early hours of the morning.

I hope you find a solution

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Hi Rose 11,

I've had chronic insomnia since the beginning of June last year. Tried Zopiclone, Zolpidem (sleping meds) Aterax (anti histemine), Amitryptaline (anti depressant), various OTC medications/preparations - hops/lavendar pillows (may have helped), Valerian (defo a good one for most people), other Valerian combinations - such as passion flower. The most successful was 2mg Diazepam - however, this was only partially efective - sometimes it just didn't work. I'm a deeply spiritual person and even tried overnight meditation, etc. however, this proved to much to cope with over 4 - 5 nights with no sleep. What helped me more than anything was reading "No More Sleepless Nights' by Peter Hauri and Shirley Linde. It's actually one of the best books i've ever read! And i've read a LOT of books - i'm an academic. It's a superb book. I would recommend it to anyone with sleep issues (which is probaly most of us!).

I now use Diazepam in an extreme emergency, but avoid it as much as i can. What helps is blackout blinds (dark room), good sleep hygiene, but not evey night, dimmed lights (essential), no tech after 10pm (but do have some tech nights if it's relaxing - i.e. watching a short vid, etc).

i managed to reset my body after two months of almost no sleep. It took a lot of hard work and effort. Good sleep hygiene was essential. If you aren't a meditator/relaxation technique person i strongly recommend that you learn - it's really beneficial.

i think the main thing for me was to practise acceptance - this is how i am now, i can't sleep, but it will pass in time, etc. State of mind is everything with insomnia, as it changes our brain chemestry, which is why it feels so awful.

it seems that insomnia is now a well recognised symptom of Dysautonomia, Pots, and many, many other chronic conditions.

I can't think of anything else at this point, but i'll let you know if i think of anything else.

I hope you feel better soon,

Mike :-)

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I actually developed worsening narcolepsy over the years and have had severe insomnia for years since my POTS became severe. I tried everything medicinal and non-medicinal and had no luck. My insomnia got so bad I could go days without sleeping but once the narcolepsy got worse the lack of sleep started causing hallucinations. I now will start hallucinating if I go just 2 nights in a row with less sleep than I need or unrefreshed sleep. 

My pain management doctor was working to find a better muscle relaxer for me and after many trials we came across Tizanidine (Zanaflex). Well come to find out it is my miracle sleep aid. I have been using it for almost a year now and has not lost it's effectiveness at all. The only down side is that I cannot take it during the day as a muscle relaxer because it drops my standing bp even more than I already have and of course the med knocks me out. It is a great nighttime muscle relaxer/sleep aid and I don't wake feeling drugged. I guess it's important to keep searching for something that helps you sleep even if it is used off label. I hope you find what helps!!

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If your sleep has changed and you started taking a medication at the same time, there is a good chance it is related to the med.  I agree with the post above.  My dr gave me some info on sleep hygiene and the tips are really good.  I also bought sleep music from Amazon which works well.  And then I have also used melatonin and ambien as needed.  Your body will probably settle down on the florinef after a few weeks.  I would also measure HR and BP before and after sleep to see if those are affecting your sleep.

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I have 2 things that really help me. Kavinace Ultra pm by NeuroScience has been amazing. It's a mix of GABA, serotonin, and melatonin. It's a little pricy for a supplement, but it is well worth it to me. It is much more effective than melatonin for me. I sleep deeply and don't feel foggy in the morning. 

 
I also listen to audiobooks while falling asleep. I have a subscription to Audible. And I also use an app called OverDrive that lets me check out library audiobooks. It takes me a long time to fall asleep, but if I am listening to a book, I fall asleep in under 45 minutes. I also turn the book back on if I wake up for more than a few minutes in the middle of the night. This keeps my mind from swirling around. I had to find some comfortable ear buds. And the noise cancelling ones double as ear plugs. 
 
Between the Kavinace Ultra and the audiobooks, I almost never have a sleepless night. 
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  • 2 weeks later...

Hi, I have had good luck this week with swiss miss dark chocolate hot chocolate mix, I think it just help relax me and must help with balancing sugar throughout the night.  I am not sure if it will last, but this week it is helping.

good luck

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I just discovered a free podcast called "Sleep with Me". It's specifically meant to accompany you through the "DDN" (Deep Dark Night!) and help you fall asleep! It's odd, quirky and not for everyone, but it's helped me! The guy who does it tells you rambling meandering stories that kind of get progressively more far-fetched and boring as the hour progresses! You kind of have to give it a shot to "get it" (check out a few different episodes). It's much more soothing and effective for me than anything else I've tried (A LOT!). I think this guy has really hit on how insomnia messes with you. He's found a really comforting, funny method to help, and I'm now seeing he has quite a following! Best of luck!!

 

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Hahaha, hey if it works, I hope it continues to work for you.  My latest sleep aid is a sound therapy machine. It plays many different sounds from a vacuum cleaner, airplane, wind, and many others, but my favorite is rain.  I bought it at Bed Bath and Beyond.  And of course, I am still using hot chocolate too, but I may try switching it to hot broth:unsure: for less sugar!!!  Listening to this guy doesn't sound so strange to me, my daughter loves to listen to audio books while she sleeps. Hey, I may need to give him a shoot myself...so thanks for the tip.

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