Lemons2lemonade Posted July 2, 2012 Report Share Posted July 2, 2012 seeing how everyone else is sleeping! Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted July 2, 2012 Report Share Posted July 2, 2012 I'm in a constant state of exhaustion, like I'm sleepwalking- and no matter how much I sleep, this feeling never goes away. I wake up tired and go to bed tired. Maybe this is why I can't see straight? Quote Link to comment Share on other sites More sharing options...
puppylove Posted July 3, 2012 Report Share Posted July 3, 2012 I couldn't really answer the last one. I usually try to force myself to sleep if I'm up past 4:00 am because I know I will be a wreck if I don't. I'm only tired if take melatonin and sometimes that doesn't work... Quote Link to comment Share on other sites More sharing options...
McBlonde Posted July 3, 2012 Report Share Posted July 3, 2012 I had an upside down sleep cycle for a loooooong time. In February, I stopped taking Effexor and around the same time I started to going to sleep around 12:00 and wake up around 7:00. I don't know if the Effexor had anything to do with it or not. I took it in the AM. Maybe it had the reverse affect on me (shocking i know! Also, way back when I first got sick and had fibro symptoms, the rheum. prescribed a small dose of Trazodone. He said it made you go into the "good" deep sleep. Also, 1 mg of Klonopin at night. The combo seems to give me 7 or 8 hours of good sleep. Quote Link to comment Share on other sites More sharing options...
Birdlady Posted July 3, 2012 Report Share Posted July 3, 2012 I was shocked to see most people don't take naps... I am confused by this because many consider fatigue their worst symptom. Am I missing something? I probably take 1-3 naps a week. If I get overheated, it is almost guaranteed I'll be napping at some point. Even if it's just for 15 minutes. The heat really takes it out of me.Also my sleep schedule continuously rotates. haha Quote Link to comment Share on other sites More sharing options...
Daisy86 Posted July 3, 2012 Report Share Posted July 3, 2012 I guess I'm the only one who only sleeps for 3 hours a night at the moment...I expected there would be more people with this problem. Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 3, 2012 Report Share Posted July 3, 2012 I am dx'ed with daytime hypersomnia. But, I only sleep/nap for 45 mins or so, then have another nap when I can't stay awake a litlle later. Then, at night, I find it difficult to fall asleep and don't get very restful sleep when I do finally get there. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted July 4, 2012 Report Share Posted July 4, 2012 I sleep at night maybe 2 hrs at a time as I am constantly waking up due to joint pain, neuropathy, head pressure, palpitations, etc...... I cannot nap.....I am always exhausted but it is not sleepy tiredness more like bone tired weariness....probably similar to CFS....before POTS I used to love to sleep..it was my favourite past time Bren Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted July 4, 2012 Report Share Posted July 4, 2012 I was shocked to see most people don't take naps... I am confused by this because many consider fatigue their worst symptom. Am I missing something? When I was very symptomatic I took a nap every day. I don't feel compelling need to nap these days but I do typically feel tired/sleepy in the afternoon. Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted July 4, 2012 Report Share Posted July 4, 2012 I sleep at night maybe 2 hrs at a time as I am constantly waking up due to joint pain, neuropathy, head pressure, palpitations, etc...... I cannot nap.....I am always exhausted but it is not sleepy tiredness more like bone tired weariness....probably similar to CFS....before POTS I used to love to sleep..it was my favourite past time BrenBren, me too... I rest alot, but can't sleep in the day and I LOVED sleep too- before Pots. Now I realize it was a gift to be able to lay down at the end of the day, get comfy and drift off to sleep knowing that you would have a good, restorative rest. I actually believe that the world would be a more peaceful place if everyone had the privilege of a good night sleep. So many knee jerk reactions and bad decisions are made when people are overtired and can't think clearly. Quote Link to comment Share on other sites More sharing options...
puppylove Posted July 4, 2012 Report Share Posted July 4, 2012 When first got really sick, before I knew what was wrong with me, nausea or homework would keep me up a lot of the time. Then it was IMPOSSIBLE to wale up at 5:45am for school the next day. The times when I actually got up and made it through school I had to take a nap when I got home. Things have really changed in my sleeping patterns and now I have insomnia- so that's why I don't nap anymore. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted July 4, 2012 Report Share Posted July 4, 2012 I've found that if I nap I don't sleep well at night, even though I feel really fatigued all day long. I can relate to the post where they said that it's more of a 'bone weary' weakness/fatigue instead of actually being sleepy. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted July 4, 2012 Report Share Posted July 4, 2012 Oops - sorry, forgot to add that I also take 1 mg of Klonopin and 75 mg of Trazodone every night, like McBlonde.I answered 'yes' to every answer on the last question, they all seemed similar to me. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted July 4, 2012 Report Share Posted July 4, 2012 I agree the exhaustion with POTS, for me, was barely addressed by sleeping more. Quote Link to comment Share on other sites More sharing options...
Anoj Posted July 4, 2012 Report Share Posted July 4, 2012 My pattern is late - I like to stay up late & sleep late. Unfortunately, that's not very convenient. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted July 5, 2012 Report Share Posted July 5, 2012 I also only sleep with the help of meds(xanax). If I don't take it, I don't sleep.I was surprised to find so many don't nap, also! I have taken one nap in the last 10 or so years, and that was when I got home from my sleep study! I slept maybe 3 hours during the study, only because of my xanax. Otherwise, I am never sleepy during the day, but like others just fatigued physically. My mind is almost hyperactive and would never let me sleep. Quote Link to comment Share on other sites More sharing options...
micheller Posted July 5, 2012 Report Share Posted July 5, 2012 When I first got sick I would barely sleep, nausea kept me up. I would get 5 hours top a week. Then I went to sleeping a lot, over 10 hours a night. I had an iron infusion and I got 6-8 hours a night and felt great for a week! I think my iron has wore off because I'm back to sleeping 9+ and have to drag myself out of bed. No naps for me, my 3 munchkins don't allow it. Quote Link to comment Share on other sites More sharing options...
NMPotsie Posted July 6, 2012 Report Share Posted July 6, 2012 I have a horrible time falling asleep because of my adrenaline, which never seems to shut off. It seems like I either wake up with tachycardia (140+ from dead sleep) or wake up coughing because I have bradycardia (38-44 pulse) and have to "restart" my heart. I couldn't live without naps because I never get a full night's sleep; I can only sleep 2 hours or so at a time. Quote Link to comment Share on other sites More sharing options...
lissy Posted July 7, 2012 Report Share Posted July 7, 2012 I'm always tired no matter how many hours I sleep or naps I take, during specific times in the month I have extra fatigue and it use to corespond with my menses but I had a hyster 4 months ago but I guess I still have hormonal flucations that cause the same symptoms I had prior to surgery just without u Know....I also need to just go on and do a sleep study, one doc gave me a referral and I never went and it did, I have very shallow breathing and pauses no snoring and I think I stop breathing...SO maybe I have sleep apnea anyone that has sleep apnea did the cpap make a big difference??? Quote Link to comment Share on other sites More sharing options...
hholmes13 Posted July 13, 2012 Report Share Posted July 13, 2012 I sleep 7-9 hours most nights and usually nap 1-2 hours most days of the week and am still exhausted. The only way I can sleep at night is by taking either melatonin or something like benadryl. Otherwise I lay awake staring at the ceiling for hours or I wake up in the middle of the night and can't fall back asleep. It's annoying feeling like you can never get enough rest! Quote Link to comment Share on other sites More sharing options...
McKenzie Posted July 15, 2012 Report Share Posted July 15, 2012 I'm so weary and sleepy that I usuly take 2-3 naps each day to get by. I find myself falling asleep at my desk and have to go lay down. I usually set a timer for 15-20 minutes with a longer nap over the lunchtime. I take another nap at the end of my workday before attempting anything else. I find that if I don't allow myself to nap, the nausea gets the best of me. Quote Link to comment Share on other sites More sharing options...
issie Posted July 16, 2012 Report Share Posted July 16, 2012 I just posted a link about sleep and pain with EDS. It seems so connected with POTS too. It was explained better than anything I've seen before.Issie Quote Link to comment Share on other sites More sharing options...
MarkA Posted July 17, 2012 Report Share Posted July 17, 2012 I am not sleeping deeply despite being on a CPAP. When I get up my muscles are just as tight as when I went to bed. I wish I could find something to get them to release and loosen up. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted July 21, 2012 Report Share Posted July 21, 2012 Well I've been using my sleep timer on my tv for years. It seems to distract my mind and I fall asleep listening to it, then it goes off by itself and I stay asleep. But, I never wake up feeling great even then. According to a sleep study though I get hypoxia during REM. I figure that is due to the autonomic neuropathy effecting my breathing during that stage of sleep. Quote Link to comment Share on other sites More sharing options...
jenniferlynne76 Posted December 10, 2012 Report Share Posted December 10, 2012 I'm probably sleeping closer to 3-4 hours a night, but since that wasn't an option, I erred on the optimistic side. ;-) And it's weird, but I've never been a napper. Even though I'm functioning on a frustratingly low amount of interrupted sleep each night I am not tired during the day at all. Go figure.I, too, cannot sleep without the help of some type of sleep aid. Trouble is, my neurologist and I still haven't figured out exactly what works for me yet. We've tried trazadone (which I couldn't take...it dried my sinuses out something horrible!), ativan, atarax, doxypin, valium, restoril...All work insignificantly at best. Most recently I was given 5 mg of Ambien, which isn't doing a thing. And now we've decided to try klonopin. I have to believe there is some drug (in the right dosage or combination) out there that will help me eventually.I have a sleep study scheduled in January, but until then, it looks like we'll just keep trying.Like so many of the rest of you, I get weird adrenaline rushes at the most inopportune times at night. And even on the odd night when I am able to fall asleep, I'm unable to stay asleep, finding myself in a perputal cycle of fall asleep-dream-wake up ... fall asleep-dream-wake up. :-\I was always an amazing sleeper (and someone who really enjoyed my sleep) prior to my dysautonomia diagnosis last month. And man...do I miss those days! Quote Link to comment Share on other sites More sharing options...
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