Tachy Matt Posted May 12, 2016 Report Share Posted May 12, 2016 Does anyone else struggle with insomnia at night? Mine isn't too bad but it's a little frustrating when I purposely go to bed early only to find myself unable to fall asleep for another hour and a half. Let me know what your thoughts are or what to do to sort of minimize this problem. Thanks! Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 13, 2016 Report Share Posted May 13, 2016 Hi Tachy Matt, This is a common issue for dysautonomia patients. There was even a study of POTS patients that showed a phenomenon called Alpha Delta Sleep Syndrome. I'll see if I can find it and link it. I find that 3 things help me (two of which are unconventional): 1) My body needs a minimum of an hour, often linger, to be in bed winding down before I can sleep. 2) Against all sleep hygiene advice, I need to either put on a movie that I have watched so many times I can recite the lines. It seems like enough to distract my mind from racing with thoughts, yet, because I know what's going to happen I don't subconsciously stay up to see how it ends. The alternative is to turn on soothing instrumental music....no lyrics to sing along with. It accomplishes the same thing for me. 3) On really desperate nights (3-4 hrs after laying down), I will try a 1/3 of a cup of 1/2 caff coffee with lots of cream. This very tiny amount of caffeineseems to actually have a paradoxical effect on me and I fall asleep almost immediately. Again, that is a completely unconventional approach. Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 13, 2016 Report Share Posted May 13, 2016 (edited) Here are links to two old threads on this topic. One has a really informative video...long but full of info. The other has a link to a thread that has the Alpha Delta Syndrome paper in it. http://forums.dinet.org/index.php?/topic/26652-strange-new-phenomenon-happened-today/#entry248257 Edited May 13, 2016 by Katybug Quote Link to comment Share on other sites More sharing options...
dancer65 Posted May 13, 2016 Report Share Posted May 13, 2016 I find the more fatigued I feel the harder it is to sleep . I have found meditation and breathing exercises have helped me especially on the nights my heart is pounding in my head. If I still can't sleep I will get up and do something for half an hour and that seems to distract my racing thoughts . Quote Link to comment Share on other sites More sharing options...
yogini Posted May 13, 2016 Report Share Posted May 13, 2016 I second the other post - lots of great info in old posts on the forum. Things that work for me: strictly following rules of sleep hygiene, exercise, melatonin, sleep music and if needed Ambien. Quote Link to comment Share on other sites More sharing options...
Tachy Matt Posted May 13, 2016 Author Report Share Posted May 13, 2016 Thanks for all of your suggestions! The Alpha Delta Syndrome is interesting and helps describe the interrupted sleep. No wonder why we are so tired all the time! Quote Link to comment Share on other sites More sharing options...
htberg Posted May 13, 2016 Report Share Posted May 13, 2016 I'm a chronic insomniac--haven't slept thought the night for over 30 years. Can't fall asleep and once I do, I'm up several times and sometimes for several hours at a time. Sometimes I just get 2-3 hours of sleep, sometimes 5, one in a very great while 7. Then I do the happy dance. I haven't found anything helpful (Melatonin, chamomile, deep breathing, warm bath, counting sheep, reading, crossword puzzles, weighted blanket, sound machine, ear plugs, etc. etc. etc.) other than like Katybug said, putting on some show I've watched a million times. Thanks for the heads up on Alpha Delta Syndrome--I haven't heard of that before and will look into that. I've been reluctant to do a sleep study b/c the doctors that believe in dysautonomia blame everything on that and the ones that don't blame it on anxiety. I don't think I have anxiety except as related to the frustration regarding this diagnosis and the lack of professional help. Quote Link to comment Share on other sites More sharing options...
abizzle229 Posted May 22, 2016 Report Share Posted May 22, 2016 I have had chronic insomnia as well. Always been a struggle for me. I have tried numerous sleep medicines, and Ambien and Remeron are the 2 that work for me. I like Remeron more, because with Ambien, my tolerance built up to fast and I did a lot weird stuff in my sleep (bad side effect!!!). With Remeron, I sleep nicely for 10 hours, and actually wake up feeling refreshed for once. Feels nice. Quote Link to comment Share on other sites More sharing options...
Sylvie33 Posted May 22, 2016 Report Share Posted May 22, 2016 Remeron (an atypical antidepressants) has been highly effective at a very low dose for me: 7.5 mg taken 2X night (I will wake up at least once). Apparently it works better for insomnia at a low dose. However, I gained 12 lbs. In one month! It makes me ravenous.. It also apparently slows metabolism...for I've controlled my eating and have not lost a ounce in the past two months. I meet with my doc this week to discuss low-dose trazadone (an old-school SSRI) as a substitute. Quote Link to comment Share on other sites More sharing options...
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