potsyturvy Posted May 10, 2013 Report Share Posted May 10, 2013 I've had a lot of circumstances come up lately where I haven't been able to get enough sleep at night. Not just the normal fatigue, but actually getting too few hours of sleep. I work part time, but if I don't get enough sleep, I get really sick to my stomach and get horrible vertigo. I know it is ideal just to get enough sleep, but when that is impossible, how do you cope? I can't drink caffeine because it makes my heart rate increase and my stomach feel worse. Quote Link to comment Share on other sites More sharing options...
badhbt Posted May 10, 2013 Report Share Posted May 10, 2013 I don't know the answer to that one...I have the same problem though. I have tried over the counter sleep aids and prescription. I can still wake up at 2am ready to go. I never had a sleep issue before POTS and I had no idea you could survive with little amounts of sleep. It does make my symptoms worse the next day. I hope you find some answers and if you do, please share Quote Link to comment Share on other sites More sharing options...
Hope Posted May 10, 2013 Report Share Posted May 10, 2013 Not enough sleep definitely equals worse symptoms for me. I'm curious to see if somebody has a good tip on this one. Quote Link to comment Share on other sites More sharing options...
looneymom Posted May 11, 2013 Report Share Posted May 11, 2013 I wish I had some answers for you. The neurologist has my son on 2mg of Lunesta and he is still not sleeping through the night. However, I understand with severe insomnia, this dose may not be enough for him yet. Things that use to work in the past for him like Dramamine or Benadryl no longer help. This problem has been going on for awhile. Quote Link to comment Share on other sites More sharing options...
Batik Posted May 11, 2013 Report Share Posted May 11, 2013 I wish I knew. My sleep's all over the place right now, what with horribly itchy skin and my antihistamines being changed all the time.Whatever you do, do NOT drive if you're this short of sleep. Quote Link to comment Share on other sites More sharing options...
looneymom Posted May 16, 2013 Report Share Posted May 16, 2013 Anybody's sleep getting better? Just wondering. The neurologist has put my son on Lunesta but he's still is not sleeping through the night. I read that Lunesta has to bind with Gaba receptors. So if he doesn't have this, I'm guessing this is the reason why he may not be sleeping yet. Quote Link to comment Share on other sites More sharing options...
robert elrod Posted May 16, 2013 Report Share Posted May 16, 2013 I go through bouts of insomnia and hypersomnia,I found adderall to be the only way I can get out of bed, I take it then approx an hour to a hour and a half I can get out of bed and make it to the couch. I know a lot of it has to donwith the oain and not but if I dont get my morning dose of meds I won't make it out of bed until after 2. There are still periods where I sleep 20 hrs a day and periods I go days without sleep. The adderall helps but definitely hasn't fixed it. Quote Link to comment Share on other sites More sharing options...
diabeticgonewild Posted May 16, 2013 Report Share Posted May 16, 2013 Well, sleeping pills are dangerous in general. If they are needed temporarily, for a defined period of time, you can probably get away with it.However, if sleep due to dysautonomia is really a problem, you might want to go to a counselor or psychologist that specializes in behavioral sleep medicine.http://www.absm.org/BSMSpecialists.aspxI went to one, and it truly works. I thought it was not going to work, and it was extremely helpful. It sure beats sleeping pills too! Quote Link to comment Share on other sites More sharing options...
NMPotsie Posted May 16, 2013 Report Share Posted May 16, 2013 Not a great answer but I often don't sleep enough and I have a bit of decaf coffee. Regular coffee, even a bit, will jack up my hr and bp but decaf has just the tiniest bit of caffeine and that helps without sending my system into overdrive. I also lay down and close my eyes a lot, whenever possible; it's not sleep, but it does seem to help pick me up. Quote Link to comment Share on other sites More sharing options...
badhbt Posted August 16, 2013 Report Share Posted August 16, 2013 Anyone else find a regimen that works for them? Any tips on sleep? Quote Link to comment Share on other sites More sharing options...
Becia Posted August 16, 2013 Report Share Posted August 16, 2013 No tips, just needing some help myself sleeping... I get maybe two to three hours a night. I try to nap in the day if I can, but the midodrine makes me feel horrible if I do manage to lay down. I've also had to rest sitting up lately because my heart is palpitating like crazy, and I hate it, it shakes me very hard physically.My doc said take Benadryl. Yeah, that ain't working yet. Quote Link to comment Share on other sites More sharing options...
khaarina Posted August 16, 2013 Report Share Posted August 16, 2013 Benadryl has been the best sleep aid for me. I take 25mg every night. If it doesn't work, I take another one and that usually puts me out. Still, sometimes nothing works and I lay awake all night or most of the night, or I wake up again and again and by morning I feel like a train wreck. I haven't found anything that helps in that case but lots of rest and staying hydrated. I used to fight it, try to do things on little to no sleep, but I realize now that fighting it only prolongues my agony and makes the insomnia worse. I can't work anymore anyway, so it isn't a huge deal if I am stuck in bed all day instead of most of the day. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted August 16, 2013 Report Share Posted August 16, 2013 Their IS NO remedy for lack of sleep (for us) other than sleeping. Sleep seams to be even more essential to people with dysautonomia. Quote Link to comment Share on other sites More sharing options...
looneymom Posted August 16, 2013 Report Share Posted August 16, 2013 When I started doing more research, I learned that iron, Vitamin D, and B vitamins, calcium, and magnesium could also cause insomnia problems. My son's levels have been checked very recently and they are all in the high range. My son has also tried melatonin, Dramamine, and Benadryl but these helped him before the POTS diagnosis. The only thing that has helped so far is the extended release clonidine he has been put on. My best guess is that his pain levels may be causing the sleep issues. However, these other vitamins and mineral levels are going to be checked every six months since he was deficient in several of these after he was diagnosed with POTS.Rachel Quote Link to comment Share on other sites More sharing options...
AshleyPooh Posted August 16, 2013 Report Share Posted August 16, 2013 I personally have not found a fix to this, except eventually getting sleep. My symptoms are terrible the day after not sleeping ( like today actually, I feel so out of breath it's ridiculous). The best sleep aid I have come across, meaning the most powerful, is Unisom. It's over the counter, and will knock you out like a heavyweight champion. the only problem with it is a heck of a sleep aid hangover the next day, so I only use it for ' emergency' sleep deprivation. Also I found with Unisom, the antihistamine is so powerful that if you resist sleep even for a minute, you will start getting some serious restless leg syndrome type stuff, fidgety to the point of near pain. My boyfriend kept me up once after taking it, only for a while but he was watching tv. I wound up constantly stretching my leg muscles and arms to get rid of the feeling, but as soon as the tv went off and i relaxed, I was out.Decaf coffee is also a good suggestion. It has just enough caffeine to help energize you, but not to send you into tachy problems. I need some right now, really.... Quote Link to comment Share on other sites More sharing options...
badhbt Posted August 16, 2013 Report Share Posted August 16, 2013 Becia,I was told that you should not lay down while on Midodrine, even for a nap. It can dangerously spike your bp. You might want to check with your Doctor. Quote Link to comment Share on other sites More sharing options...
AshleyPooh Posted August 17, 2013 Report Share Posted August 17, 2013 Funnily enough badhbt, my cardiologist said she wasn't too worried about me laying down on midodrine. Maybe b/c my bp was so low, they knew I wouldn't spike that high Quote Link to comment Share on other sites More sharing options...
Becia Posted August 17, 2013 Report Share Posted August 17, 2013 Yeah, I do my hardest to not lay down, I suffer big time if I do, but man, I've got to get some rest, and that seems to be the time my body forces me to. It's either that or pass out more. I do try to rest sitting up as much as possible, just sometimes end up sliding over on the bed. Quote Link to comment Share on other sites More sharing options...
Becia Posted August 17, 2013 Report Share Posted August 17, 2013 And when I started my meds, they never told me to not do that... Everything I've discovered that the stuff does to me, I ended up reading about it after the fact when we all sat down and discussed what was going on, and questioned if it was normal or not. Once again, I reacted badly to celexa, and the doc kept saying i was fine, except it looked liked was seizing to my roommates, and a side effect was tremor. Quote Link to comment Share on other sites More sharing options...
kitt Posted August 17, 2013 Report Share Posted August 17, 2013 . Quote Link to comment Share on other sites More sharing options...
okiedokie123 Posted August 17, 2013 Report Share Posted August 17, 2013 Any of you suffer from sensitivity to sound or noise? I suggest purchasing a white noise machine. I've been using one for the past 2+ years and it's definitely aided me in falling asleep and staying asleep while blocking out sound. Though, in cases where my mind is running or I have increased anxiety due to something the next day, it can't really help with that. Quote Link to comment Share on other sites More sharing options...
khaarina Posted August 21, 2013 Report Share Posted August 21, 2013 I second the white noise idea. I wake up very easily now and once I'm up, I'm up for good, so white noise it a big help with keeping me asleep through the night. Also it is important to go to sleep when you start to get tired. If I try to stay up late, I end up not sleeping at all, probably because the more sleepy I am, the sicker I am. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted August 24, 2013 Report Share Posted August 24, 2013 http://www.absm.org/bsmspecialists.aspx There are dr's grouped by cities and states that youll hopefully find in your area if you are interested.List of Board Certified Behavioral Sleep Medicine. I've tried everything else.. OTC's, RX's, therapy, sleep studies, meditation, yoga, baths, blah blah..I have an appt next month with. Dr. Tajuddin. Keeping my fingers crossed. I don't think i've slept more than 2-3 hours of choppy sleep in years. I should be exhausted, but I'm not. Hoping this dr. will be able to provide some insight!Sorry if I semi-hijacked! Just wanted to give you all this list I found. I hope everyone gets some sleep tonight.... Quote Link to comment Share on other sites More sharing options...
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