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Sleep Probs


Jacquie802
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Hi guys,

Months ago I could sleep through the night fine, now I am waking up many times a night. Does anyone have any idea what could be causing me to have sleep probs??

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HI!

when you wake up do your legs ever hurt at all? or just have a dull, heavy, throbing, or other sort of discomfort or annoyance? i used to sleep thru the night without a problem- but this summer i started having problems and was diagnosed with Restless Leg Syndrome- the 'pain' goes away when i get up and move around- it causes me to wake up alot and feel uncomftorable. i just take a little higher dose of my nueronton at night- that i am on for nerve pain- havnt really been on it long enought to say how well it works...... but just a thought- IF you do find that ur legs hurt at night. Good luck!

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Hi,

It could be related to your medicines. It might also be easier to attribute it to something if you can say why you're waking up, and is it hard to go back to sleep when you do?

FX are you waking up to go to the bathroom, is your mind running like crazy? Or is there pain or something else?

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Ok, a lot of questions for you...

When you wake up during the night how long does it take you to go back to sleep?

When you wake up are you groggy and confused or alert?

Were you dreaming when you woke up?

How do you feel when you wake up? Pain, too hot or too cold, very thirsty, etc.

Do you share the bed with anyone?

What color are your pajamas? ( B) )

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Guest tearose

Good sleep is an ongoing problem.

I can go months doing fine and then have months of poor sleep.

I had a sleep study a few years ago and it showed no apnea but I unconsciously wake up hundreds of times an hour in these little mini bursts and it results in non restorative sleep. I have no recollection of these awakenings, but they are all documented through the brain wave tests they run.

Only now are doctors beginning to study the various sleep disorders more...

I can't help but believe, as does my pcp, that our troubles are related to our ANS fluctuations.

But, unfortunately, no body has come up with the right tools to measure our ANS neurotransmitters while sleeping!

If I have trouble with norepinepherine during my waking day, my norepinepherine must be doing something funky when I am sleeping. I guess they haven't figured a way for drawing blood while I am unconsciously sleeping.

anyway, my May neurologist said that "next time" I go back out to Mayo, he may want to set me up for a specialized sleep study, it is still new research. ...I just don't have the energy to think of a trip out there right now. I have been considering this though. Maybe a couple of us should do it at the same time?

Feel like Minnesota in February Jackie?

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I have had problems all long with sleeping. I talked to my doctor about it and he said it can be a problem caused by POTS, I am not sure if that is ture, but he tried sleep meds, and I have had a hard time finding one that works for me. Have you talked to you doctor?

I wish you the best, hope you start sleeping again soon!

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Hi,

THis whole sleep thing is weird. Sometimes I wake up from sleep in complete pain...more like my legs are hurting, then other times I wake up to muscle spasms...THEN I sometimes wake up to the palps and tachy with the flushing. I know my doc is most likely going to put me in for a sleep eval. The endo was toying with the idea that maybe I am having some sort of seizure at night...?? Does anyone else seem to have these weird patterns??

Thanks for any input!

Jacquie

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"Sleep is regulated by many chemicals...", "..change is believed to be stimulated by the hormone changes..."so says a book I'm reading about our brains. I have had varying sleep issues for 2 years. I am on 3 hormones and 3 chemicals or substances made by my brain or that my brain is supposed to tell my body to make. My body either doesn't make them or doesn't make enough of them. After starting on florinef I have had a harder time falling asleep again. I am curious what my Dr. will say when I go see her on Mon.

This book also says "During our 'dead to the world' states, the pituitary gland delivers extra growth and repair hormones to the blood stream. I suppose it is a vicious cycle of not being able to sleep affecting our body's hormones and chemicals and then our chemicals and hormones affecting our sleep.

don't know if this was helpful or not. I am still struggling myself at the moment. I was doing so much better for a while. Pots stinks! Yes it does affect our sleep. Medication isn't even me helping anymore.

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jacquie -

for me waking up multiple times throughout the night ended up being sleep apnea. i didn't have other more "typical" symptoms nor fit the "typical profile". the leg symptoms you speak of sound a bit like how i've heard restless legs syndrome described by some, though this isn't something i personally have.

smiles -

fyi, i know at least one other person on the board for whom florinef brought on significant sleep problems....

:rolleyes: melissa

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When you wake up during the night how long does it take you to go back to sleep?

seconds unless i gotta use the bathroom in which case i do that first.

When you wake up are you groggy and confused or alert?

i don't remember--- could go either way--- some times i am not sure where i am or if i am still dreaming

Were you dreaming when you woke up?

yes probably, i am most the time--- lots of nightmares and bad dreams--- very violent and very personal

How do you feel when you wake up? Pain, too hot or too cold, very thirsty, etc.

swollen, hot, kinda sweaty but really just sticky, i gotta pee, sometimes hungry and really thirsty or nauseaous, my joints hurt a lot, so do my legs that feel heavy.

Do you share the bed with anyone?

most nights no but some times my cat and some times my man--- with out the cat (poor Shadow)

What color are your pajamas?

what are pajamas? no i am just kidding, i am wearing camoflauge bottoms, i am always on the hunt :(

i just thought this was a cute questionarre so i posted my answers to it. but they are my responses as i too have sleep problems.

dionna :)

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The more I read posts on this forum, the more amazed I am that we all have so many symptoms in common! I find that I have symptoms that I never realized were linked to POTs until I see that you all suffer from similar, if not identical symptoms. These symptoms are not properly discussed in the literature. You all continue to be a gold mine of information.

I too awaken several times a night. It seems like I awaken after each dream or sometimes "half awaken" during a dream and act it out. Melatonin and elevating the head of my bed help so that I don't awaken as often. I always awaken at least a few times a night for the potty trips.

I don't snore and am not obese, so I have doubted sleep apnea. However, I worry that I might not fit the "typical" profile for sleep apnea and don't know it without a sleep study.

The sleep problem bugs me a lot because my daytime POTS symptoms are directly linked in severity to how I slept the night before.

Well, I am off to bed. Sweet dreams. I love my flannel nightgowns and knee high thick, pink striped, fuzzy socks.

Karyn

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My husband is not overweight (well, not more than several pounds worth) and while he did snore it was only if he laid on his back and as long as I was there I would just elbow him over onto his side and the snoring would stop. They did diagnose him with moderate sleep apnea but more importantly, he had 165 muscle twitches during the sleep test which kept him from ever getting to the deep resorative type of sleep. These twitches were not noticeable to me. Occasionally he would have a few severe jerks when first falling asleep or during a dream but I had no idea his body was so active during the night - and I am a light sleeper.

He was prescribed a CPAP back in July and he has used it faithfully ever since. We aren't sure what is going on but all of his NCS and depression symptoms have improved dramatically, to the point where most of his medications have been discontinued. While he hasn't had another sleep test with the CPAP to see whether the muscle twitches have stopped, we can only assume that improved sleep is the cause and hope that this is more than a temporary relief of symptoms.

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Hi guys,

I can't believe the responses! I always sleep in shorts and a t-shirt and usually will have a fan going, yes, even in the winter! When I wake up I always get the hot flashes and it usually takes a while for me to get back to sleep, but then there are those odd times where i have no problem getting back to sleep.

I do wake up to muscle spasms sometimes and also sometimes find myself "jump" like I was startled or something...I try to get 8 hours of sleep a night because any more or less than I find myself soo tired. I got 8 hours last night and I am exhausted still.

Jacquie

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eli et al -

obviously people have different presentations of apnea, but for me my "multiple awakenings" was closer to every 15 minutes or so, not just a few times a night. but i never snored at all in any position, wasn't overweight (and in fact was under when i started waking up so much), never had to use the bathroom during the night (polyuria can be an indicator of apnea), etc.

cpap saved my sleeping sanity level but unfortunately didn't help me in any other way, i.e. symptoms during the day.

:) melissa

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Hey Jacquie,

I've had sleep problems that are induced by meds. Have you noticed problems related to new meds or increased dosages? If not, a sleep study is sometimes helpful and not the end of the world. It's probably one of the easier tests out there...hope you get some answers!

kristen

ps- i've read that beta blockers can increase the incidence of apnea

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I was treated for sleep apnea for years, but still had huge problems going to sleep, staying asleep, and sometimes getting up. My doctors have put me on everything. I even took ambien and could stay awake all night long.

When I went to Cleveland clinic they retested my baseline sleep and found that I do not have sleep apnea. They even had me stay for multiple nights to re-check the information. No sleep apnea was the result. However the doctor there said that it is easily misdiagnosed on many people with orthostatic intolerances. . . imagine that.

The best thing he did for my sleep was to take me off of everything related to helping me sleep and started me on 12mg of melatonin. Yep, melatonin, bought over the counter. It has been a life saver. Sleep was so awful and so little, I thought I would go crazy. Within 30 minutes of taking the melatonin I am sleepy and sleep through the night. It is amazing...

hope this helps someone - make sure it is all natural

(The bottles say to take 1 tablet of 3m per night, but that is not enough for people with real sleep issues.)

Stevie

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Wow!

Thanks guys for all your replies,etc. I can't believe how many of us here have sleep problems...I see my new neuro on Dec. 22nd so hopefully he can have some answers for me....Do you think lack of sleep could be causing these horrible headaches I have been getting???

Jacquie

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Not sure if this can be considered as sleep probs but I hope you do not mind me telling you.

I have to go to bed early (not later than midnight is the best time), because I cannot wake up late in the morning. The later I wake up, the more headache I have.

When getting up later than 9 am, I use to have headache. Usually it goes away after walking around, breathing pure air and having breakfast.

It I get up even later, sometimes the headache remains and can cause nausea and vomits...

Therefore, we cannot party or overnight... I have to check the time...

I (nearly always) feel thirsty and hungry when going to sleep and when I wake up too.

I am not obese (the contrary).

I do not snore. You would not be able to listen to my breathing when I am sleeping... Sometimes I wonder if I stop breathing when I am sleeping...

If I wake up in the middle of the night, it is because I have to go to the bathroom, but have no nightmares.

Though, most of the days, I get up tired.

When a doctor asks, do you have sleep probs? Should I say yes?

Love,

Tessa

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