emartins Posted January 22, 2015 Report Share Posted January 22, 2015 i had been feeling much better for a few months. I'm still doing okay. The orthostasis isn't as bad and neither is the dizziness, but within the last month I've been having a lot of trouble waking up (typically around 3pm!!) and am starting to be extremely fatigued. Do you think this is pots related or does it sound like something different? Quote Link to comment Share on other sites More sharing options...
corina Posted January 22, 2015 Report Share Posted January 22, 2015 I'm wondering the same thing and I actually wake up at the exact same time. I've had more episodes of sleeping problems (where I woke up after about an hour of sleep and didnt fall asleep again for 3 or more hours. It's pretty frustrating but I noticed that it takes a few weeks (months sometimes) and then the pattern changes. Quote Link to comment Share on other sites More sharing options...
sparrowkate Posted January 22, 2015 Report Share Posted January 22, 2015 Oh my goodness; this is a timely topic! Daughter is waking up at 3pm as well! She is really struggling with fatigue and is sleeping for hours. She has only been to school for one afternoon since Christmas. I have been finding it so difficult to get her up, then more effort for tablets, drink and food. Nice to know she is not alone in this... Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 22, 2015 Report Share Posted January 22, 2015 Me too. For the past week... I've been waking up at night a few times and have found I've slid off my pillows and have both arms resting above my head. I used to be a tummy sleeper til I got sick and have the chest pains. Typically propped up on my back or in fetal position. Trying to push thru work today. Tired and really swimmy Quote Link to comment Share on other sites More sharing options...
stephsurf Posted January 23, 2015 Report Share Posted January 23, 2015 Gosh I can totally sympathise with this issue. After being told to start taking propranolol for the long-term, I took it for around 3 weeks before I realised my sleep was becoming very erratic. As soon as I realised I stopped it over a period of time but haven't managed to get any decent sleeping pattern back at all despite the numerous different drugs prescribed to help me sleep. In fact the low dose antidepressants for insomnia didn't work at all - infact trazadone gave me postural hypotension (we all know that is a no go for a potsie) and sleeping pills are really only effective for a couple of days and then i'm only getting a couple of hours sleep before I'm back awake again. Even though I always had issues sleeping, in other words it would take me a long time to drift off but once I did I was good for a while and if I did wake up and was still exhausted I'd relatively easily fall back to sleep again. However now it just seems like sleep is completely illusive - even if I am exhausted to the point of feeling like I am going to collapse. Not really sure what went wrong to be honest. I've literally tried every non-pharmacological measure as well and have attempted sleep hygiene but this was very difficult to do due to sheer exhaustion making me feel so much worse. I do realise that my exercise has dwindled rather a lot during this period for obvious reasons, but I'm thinking if I start that up again at a slow pace, maybe if I am able to physical exhaust myself on a consistent basis (which may be very difficult at first), this will get me back into the swing of things again - I hope so anyway. Has anybody else had any issues to this extent with their sleep? I find that I can't even take a nap during the day now even if I want to! I know I have anxiety issues (who wouldn't with this condition) and its thought I have the hyperadrenergic type as I rarely have low blood pressure so I know to a certain extent this is negatively impacting me but just can't believe how bad it has actually gotten recently. Quote Link to comment Share on other sites More sharing options...
lfreem02 Posted January 23, 2015 Report Share Posted January 23, 2015 I have been taking Klonopin, which not only helps with ans symptoms overall, but also with sleep. I take it every night. I still have issues with hypersomnia, but am working with a sleep specialist and my ans specialist to see what can help. The sleep specialist is seeing more dysautonomia patients, and is tracking them for research. I have a prescription for Nuvigil to help with fatigue and sleepiness, but haven't started on it yet. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted January 24, 2015 Report Share Posted January 24, 2015 I have a script also written for the Nuvigil (Mine was written for brainfog however). I picked it up in October and I haven't taken it yet..my fear is that it will intensify my insomnia if it is prescribed for fatigue. Quote Link to comment Share on other sites More sharing options...
maggie Posted January 25, 2015 Report Share Posted January 25, 2015 I don't sleep the night through either, since having pots. I now take one .05 mg of xanax an hour before I go to sleep. It puts me to sleep till about 2:30, then I take another one and sleep till 8:00. This past Thursday was the first time in 8 years that I slept the complete night through. I am hoping this will happen more. I still rest in the afternoon for an hour, sometimes I sleep an other days I don't. I find that if I over exercise sleeping becomes more difficult. Learning how to manage all this can be quite difficult. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 25, 2015 Report Share Posted January 25, 2015 Daytime hypersomnia is common with pots. I will have to search for a paper the helps explain one of the reasons they think pots patients have a hard time sleeping and then subsequently having fatigue. We had it posted a while ago. I'll look for it. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 25, 2015 Report Share Posted January 25, 2015 http://m.neurology.org/cgi/content/meeting_abstract/80/1_MeetingAbstracts/P03.038Here is the article. Alpha waves are the brain waves you have when your awake. Delta waves are sleep waves. (They don't explain that in the article. ) Basically, the pots patients in this study showed that they had Alpha waves (awake waves) periodically and inappropriately interrupt their delta waves (sleep waves). My pots neuro explained it's like being woken up frequently through the night which prevents getting a sufficient amount of REM sleep which is our restorative sleep. My own nighttime sleep study shows less than 20% restorative sleep. My geneticist said that number should be at least 50%. I test positive for daytime hypersomnia during a daytime sleep test. I can't take sleep meds as they Give me night terrors and sleep hygiene practices didn't help. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.