1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS
Andrew Gladman puts hyperparathyroidism under the microscope, exploring what the disease is, how it can mimic ME/CFS in presentation and how it is treated.
Discuss the article on the Forums.

POTS and Sleep Disturbances

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by soxfan, May 16, 2012.

  1. soxfan

    soxfan Senior Member

    Messages:
    627
    Likes:
    182
    North Carolina
    I have been reading a ton on POTs and other conditions in this category. I found that one of the symptoms is sleep disturbance and unrefreshing sleep as well...I am now wondering if that is my problem as to why my sleep is such poor quality.

    I have many common symptoms of this condition that have happened over the years but for some reason the doctor has never connected the dots...even though I always mention these symptoms.

    I have low blood pressure all the time but do have the problems when standing for a long period of time...the sweats...massive tiredness....neuropathy pain (constant).

    A few years ago I went to NC and got heat exhaustion to the point where I couldn't sweat. I had no tears and my mouth was extremely dry. This was the first time something like this had happened and I really think it was the beginning of all this.....

    So actually my question is what exactly are the sleep problems associated with POTS? I haven't been able to find any listed...just unrefreshing sleep and disturbances.

    I at least have a doctor who will take this seriously and if he feels I need any testing for this it will get done....I am fairly certain this (POTS) is actually a huge problem for me..thanks all
  2. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,397
    Likes:
    1,000
    Florida
    I have POTS and a sleep disorder. AND probably most of the other symptoms listed for POTS.
    From what I've seen so far, just based on looking at the POTS patients on the web, there isn't a typical sleep disorder for POTS patients. Sleep apnea, myoclonus, etc ...

    My sleep disorder consists of nocturnal myoclonus (jerking when entering rem to the point of waking myself up), diagnosed via a sleep disorder study. And insomnia if I consume any kind of excitotoxin, like gluten, hfcs, B6, MB12, ADB12 or if I get overly stimulated emotionally. Some form of exercise during the day helps. As does the combo of melatonin, theanine and 5htp.

    If you wanted to verify that you have POTS, meaning your hr increases 30 pts after 10 minutes of standing, you could do the DIY PMTTT (poor man's tilt table test) described on this site. I started the thread but others helped tremendously to work out the details ..

    I keep my bp up by using plenty of salt on my food. I never use more than the 2500 - 3000 mg rda tho. I can't stand anymore than that ...

    tc ... x
  3. soxfan

    soxfan Senior Member

    Messages:
    627
    Likes:
    182
    North Carolina
    I just bought a heart monitor that I put on my wrist..this morning when I first got up my rate was 64. Within about 15-20 minutes it was up to 96. Typically my rate is in the 60's so I don't know if that would qualify since it rarely gets over 100 unless I have been on the treadmill.
    I would like to try the tilt table test and will look it up to see if I can attempt it.

    My sleep disorder consists of waking...and when I wake sometimes I feel as though I am on a very active water bed..meaning I feels as though I am bouncing up and down or moving in a circle. It is almost vertigo but not really..very hard to explain. So that makes it very difficult to fall back to sleep. I also have total unrefreshing sleep. I did have a sleep study done and of course I didn't sleep much but showed definately no apnea or rls.

    I crave salt all the time...It just isn't that I like it but more like I need it and want it. Almost like an addiction..

    Thanks for the info. I am trying to figure this out so I won't have to quit my job and maybe get some sort of relief...
  4. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,397
    Likes:
    1,000
    Florida
    Got it. Hugs .. So have you looked at your diet ? I'm a believer in the wahls / paleo type diet. It eliminates most
    Cytokines and provides the most nutrients.

    For sleep, are you eating a meal past 7 pm ? A light snack works for me but a heavy meal keeps me up.

    H pylori woke me up in the middle of the night with nausea and later on pain.

    Caffeine ? It lasts longer in some people than others. I was under the influence for at least 24 hours after only a tiny bit.

    The diy pmttt has really helped me id what's going on when I feel puny. I was surprised to find that
    my heart rate was up 30 pts after 10 minutes. But even more surprised to see it jump 30 pts in less than 1 minute
    when I had h pylori.

    I have to lay down for an hour if my hr was up too high from being up for too long. If I get up too soon,
    my hr jumps up 30 pts within a minute again. I had to test this various times to figure this out.

    Tc . X
  5. toddm1960

    toddm1960 Senior Member

    Messages:
    155
    Likes:
    3
    Rochester, New York
    I have alpha wave intrustion, 16 times per hour I have alpha waves breaking into my delta wave sleep. For me it has lead to less REM sleep. I'd continue to push for a sleep study.
  6. mobyjoby

    mobyjoby

    Messages:
    60
    Likes:
    14
    Hi Soxfan - for POTS you need to see what your pulse is at rest lying down and then stand up and stay standing quietly in the same spot and see what happens to your pulse during at least 10 minutes. If you are walking around then you can't really assess if it is POTS or not. Mine jumps up about 30-40 points within a minute of standing up and the n drops right back down again before coming back up about 25 again. I am not sure what happens to my blood pressure.

    Not saying you don't have POTS - just that you need to stand still and not walk around in order to test yourself. (I haven't stood still for the full 10 mins because I don't like it and I got useful info within the first couple of minutes.) If standing still for 10 mins is likely to cause you to pass out I'd avoid doing this at home.

    If you have low blood pressure I wonder, if it drops really low when you are asleep and thats what wakes you up and causes the waterbed sensation of almost vertigo.
  7. soxfan

    soxfan Senior Member

    Messages:
    627
    Likes:
    182
    North Carolina
    Okay...I will check my pulse after standing still for 10 minutes..I am thinking it won't raise that much but it will be interesting to see what happens at work on Friday. That is when I really feel like something bad is going on. I come home so exhausted and have to immediately lay down for at least an hour if not more. I am on my feet 5-6 hours at work where at home I am up and down..

    Waking at night and feeling totally wierd is a huge problem...I don't have any clue what that is all about. Even when I go to bed at night I feel as though I am laying on a waterbed...my body never feels like it is still....plus with the constant thumping feeling of my heartbeat doesn't help things either...

    It is so frustrating but it is something I have never talked to the doctor about so it should shed some light on whether he thinks this is a problem for me.

    I did have a sleep study done in 2010...they said I apparently have some type of sleep intrusion as I had very little stage 3 and 4...
  8. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,343
    Likes:
    4,045
    Sth Australia
    Ive recently started being treated for my POTS and since then my sleep issue is MUCH better (im done to taking only melatonin to get to sleep and now off my other sleep drugs).

    I cant say thou for sure it was treating the POTS which has helped as I also have a home carer coming in twice a week now so maybe it wasnt treating the POTS which has improved my sleep but rather doing less? or a night I had of waking dreams.. my sleep was also better since then.

    anyway.. i thought i'd share that as it MAY OF been treating the POTS and starting drugs for that, which has greatly improved my sleep.
  9. soxfan

    soxfan Senior Member

    Messages:
    627
    Likes:
    182
    North Carolina
    I would love to only take melantonin for sleep...I am not sure my very hyper body when I go to bed will ever allow that to happen.
    I did get off lunesta 2 years ago before I started having the syptoms I am having now. I was able to sleep without using anything. I felt much more peaceful back then though when I would climb into bed (my internal body). Usually I feel like I am shaking inside or that my heart is going to pound out of my chest....

    Are you on any medications for POTS? I tried florinef a year ago and within days I was bloated and had gained 6 pounds in about 2 weeks..I felt awful.
  10. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,343
    Likes:
    4,045
    Sth Australia
    In my case I can take florinef, also salt pills, water loading and support stockings and other good POTS management techniques eg avoiding standing too long, using a cane chair in queues.. .. all up probably has things 60% improved POTS wise... it still is an issue thou and I probably need a second med for it or something.
  11. soxfan

    soxfan Senior Member

    Messages:
    627
    Likes:
    182
    North Carolina
    I drink tons when I am at work and am now starting to wear the support socks. There is nothing I can do about standing on my feet unless I just want to quit my job. I work in a pharmacy and have no choice. This has definately become more of a problem in the past couple years. When I was first sick 8 years ago I didn't have this problem...It seems to be getting worse with time.
    I didn't stay on the florinef long because of the bloated..full feeling. I have taken salt tablets also but took too many once without enough water and became really sick. I guess I could try those again...I will talk to the doc first though. Thanks!
  12. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,343
    Likes:
    4,045
    Sth Australia
    Ive heard that doctors all suggest different amounts of salt (we are probably all different in that area anyway). My own specialist tells me not to take any more then 1 salt tablet (thou that isnt all that much compared to the amount of salt I personally find I need to take).

See more popular forum discussions.

Share This Page