Lack Of Sleep

[runningshoe]

Just checking - do you all get worse when you are behind on sleep? I have not been sleeping much and feel terrible. UGH

[janiedelite]

Oh Yes! If I don't get enough sleep, I have more BP/pulse issues, GI tract quits working, migraines, just worse in general.

[Guest tearose]

Most certainly I get worse. I must take naps and avoid a problem With a prolonged phase of poor sleep it is like torture! Really.

[pat57]

Yes, much worse.

[ajw4790]

Yes, but sometimes my adrenaline etc. takes over for a day or two, and I function possibly even better than normal. Then I crash HARD! ( i.e. I just crashed and slept 18-20 hrs. straight, no food for 24 hours, little fluid while sleeping- overall just bad!) People need sleep for so many reasons, so when you don't get adaquate sleep routinely it can negatively affect just about every body system.

[ladyt]

jupp... and now i have more ore less cronic insomnia.. very fun...

[ramakentesh]

No I actually feel better when Im super tired. Sleeping a long time makes me feel worse.

But then again Im not your average POTSie - Im worse in COLD environments, find that alcohol HELPS my symptoms, etc.

[potsgirl]

Hi Lina,

I go through cycles of having very poor night's sleep and running on almost no energy and feeling downright sick to sleeping for 9-10 hours and still not feeling rested. I function better with the 9-10 hours, even though those nights I wake up several times and have to get up at least twice to use the bathroom. I'm going to be doing a sleep study in a couple weeks to check for sleep apnea.

Good luck & cheers,

Jana

[Rachel]

Yes, my symptoms get much worse when I don't get enough sleep. If I go for too long without adequate sleep I become very non-functional and need help with absolutely everything.

I hope you can get some good sleep soon. It's tough to function without it.

Rachel

[Tammy]

Sleep is so important to the autonomic nervous system. My neurologist actually recommended using Ambien as needed (not for every night but let's say you don't sleep well every night... so then you might plan on taking it every third night to get some sleep and so on. ) He understand Dysautonomia very well and stated that symptoms only will get worse if you try to push yourself through it. It's actually better to take a sleep medication, as long as you are not taking something else that would be contradicted with it.l Hope you can get a good night sleep soon.

[Janey]

YES! And it also can't be too much!!

Too much or too little sleep really messes up my autonomic nervous system

In fact, sleep, hydration and diet are the three main factors in my autonomic system *just about* functioning.

Janey

[erikainorlando]

I like what Tammy said. I have never taken sleep medication before but I do now. I absolutaely can't function at all if I don't sleep well. I habe a hard time sleeping usually just due to a general uncomfortability (chest pain body aches). I don't abuse the sleep medication but for sure am willing to use it.

Erika

[potsgirl]

Just wondering...It seems that there are quite a few of us that have sleep apnea. Have you ever been tested for that?

Jana

[sandymbme]

Not enough sleep is a total disaster for me. But I can "crash" and sleep 14-20 hours even if I am getting enough. I am just worse off if I don't get enough.

[ramakentesh]

He understand Dysautonomia very well and stated that symptoms only will get worse if you try to push yourself through it. It's actually better to take a sleep medication, as long as you are not taking something else that would be contradicted with it.l Hope you can get a good night sleep soon

There are types of POTS in particular that respond best to exercise rather than medications - in this sense in order to improve, one would have to push themselves through the obvious post exercise malaise.

Ofcourse, doctors can say all sorts of the things about POTS but more often than not another specialist will tell you the opposite as fact as well. This is because they dont really know what is causing POTS in the majoprity of cases - they have theories and recent antibody work etc is interesting.

Ben Levin and other doctors in particular advocate exercise above all else for POTS.

In my case, exercise eventually helps and if I didnt push my body it would never improve.

[potsgirl]

I'll second Ramakentesh's thoughts on exercise. My doctor's have told me to never stop moving, the more moderate exercise I can tolerate, the better. I know this is certainly not true for everyone, but it is for me. I was in pretty good shape when I got sick, and I believe it's helped me along the way. I did try a sleep med when I got desperate, but it had the opposite effect on me.

[pat57]

I have been using Ambien as needed for years. Exclusively for nights when I work til 1am and need to be up the next day ,early. I would be 3 days recovering from the lack of sleep if I didn't fall asleep quickly.

Been there done that........

[runningshoe]

Wow, thanks guys for all the responses! I have IC so sleep can be tough for me. I do take meds but....

[erik]

I just read a bit on "IC" and some of the research directions. There are more than a few coincidences between IC and things like POTS... and some "theoretical" ways they might interact or overlap (plus I happen to have some minor bladder pains and definitely have periodic "dumping" episodes).

But in research one thing is that the Kinin-Kallikrein System has suspected involvement in IC... it is different but very similar to histamine effects (like mast cell response and such)... there is some limited interaction between this "KKS" and the Renin-Angiotensin-Aldosterone System (specifically in kidney feedback loops)... and Bradykinin happens to be a potent vasodilator agent (one of the things that tends to "goes wrong" in POTS and such)... and the KKS is responsible for effects in the blood pressure & electrolyte regulation as well as inflammation. For example:

http://clinicaltrials.gov/ct2/show/NCT00155064

Obviously I'm just drawing thin threads between these general concepts, but I've searched a bit and haven't bumped in to any studies looking at stuff like this as it relates to POTS or other autonomic problems. Anybody happen to have heard of such studies, theories, research on the KKS or bradykinin and friends? ...or perhaps investigational use of drugs like Ecallantide, Icatibant, Cinryze, C1-INH or other stuff usually only associated with angioedema?