Ok Anyone?! I Feel Alone In This

[nikigrl8883]

i have been struggleing with pots for about 2 yrs now and my symptoms have always been hard to explain ...no one seems to understnad what im talking about even in here....please if anyone has felt this or knows what this is please tell me,,,,,i feel like im loosing it...

almost every single night i have these odd symptoms always when im tryign to fall asleep.....my breathing changes like i end up gsaping for air to get it normal again but it isnt apnea,,,this is while im still awake falling into sleep....during this time i feel somewhat dizzy and i get bizzare pressure feelings in my head and it feels like a surge of somthing from the middle of my head....i dont have a brain tumor ive had numerous testing...i do however have somw kind of pituitary issue going on that cant be put into any category....i guess its not bad enough? im going to see adiffernt endocrinologist next month but i bet anyhting she wont give me a reason why this is happening.....i force myself to somhow fall asleep and usually after this episide i wake up with a elastic band feeling around my torso....this doesnt happen everynight but alot...during the day i also feel wierd...oh also when this thing happens at night i get very anxious and panicky its like a surge of hormones is coming out of my pituitary gland.....am i the only one on earth with thiS! i dont have MS either...

[Rachel]

Have you ever been to a sleep specialist or had a sleep study done? That may shed some light on things.

I don't have the same problem, but I can say that my sleep specialist and the sleep studies I've had have really helped to explain what is going on with my sleep, why I don't feel rested after sleeping, etc.

I hope you can find some answers.

Rachel

[Lukkychrm42]

Actually, I get the breathing thing, too, sometimes, and the torso thing is what you're talking about, I think. I have no idea what it is or what causes it...

When I'm going to sleep, I sometimes justify it as if the ANS regulates breathing, and the ANS doesn't work right, then it's forgetting to breathe when you fall asleep. I dunno! It's wacko, that's for sure. And I think that's also related to why I am absolutely incapable of sleeping when I have a stuffy nose- like for some reason if I'm going to breathe through my mouth, my body won't do it unconsciously (at least not while I'm trying to fall asleep).

The torso thing doesn't happen just at night though- I've never noticed any pattern to it. Although for me, it's like a tickle sensation or something and it forces my abdominal muscles to contract. I can't explain it.

I guess I've never worried about it too much because it doesn't really affect anything. you know- it's just there.

If it's causing you to not be able to sleep BECAUSE it makes you panicky, then that's not good, though.

Mostly I get adrenaline surges while upright, but if I awaken at night and turn over onto my stomach, it'll often happen then, too. It usually just takes awhile to calm down and then it's okay.

I'm not sure what you mean by pituitary problem? Right now I forget if something has shown up in a test or if it's just an endocrinologist treating your dysautonomia? Obviously there are lots of hormonal issues that go on in dysautonomia, considering the ANS regulates the endocrine system.

I guess I'm unsure if it's really the physical symptoms that are causing you the distress or the fact that they're scary and you don't know what's going on?

I don't mean to sound patronizing at all- i guess sometimes you get used to things that most people wouldn't consider anywhere near normal, you know?! Because like I said, when it wakes me up at night, it's beyond irritating because it's disrupting valuable sleep (!! How rude!!!) and it's hard to be patient to wait for them to be over. If I have to, I'll read while waiting for the body to calm down, because starting actually thinking can mean I'll never get back to sleep!

At any rate, don't worry that you're losing it, because you're not. Other than that, I hope you start feeling better soon, and I hope the endocrinologist can give you some much needed answers!!!

[nikigrl8883]

the only thing the endocrinoligist came up with so far is i had a elevated prolactin level bu that is normalized....i had a pituitary mri to check for tumors none were found...but the gland was slightly enlarged,,,,the pills i took to lower the prolactin shrunk it i guess....and the only other hormone that was off was DHEA...mine is very very low and im only 24 yrs old ...it is suppose to be high at that age....the explaination was its a precursor to somthing else,,,,possibly adrenal problem or from abnormal pituitary function but all those hormones have come out normal so far.....so i get no answers...thats why i am going to another endocrinologist in boston next month......ughhhhhhhhhh all i know is this is ****

[Lukkychrm42]

But that's what happens when the adrenal glands are over-stressed... When we go into fight or flight, they release lots of hormones and such, but when it happens over and over again, you get adrenal fatigue. In the UK, if you have CFS and show low levels of DHEA, they may decide to supplement your DHEA. Complete adrenal failure would probably mean Addison's Disease, but it doesn't sound like your doctor is concerned about this.

I don't think I've ever had my DHEA levels tested, but I would bet money that most of us here with POTS and regular adrenaline rushes have low DHEA levels.

I take a natural adrenal supplement "prescribed" by Dr. A.

BTW, we're the same age.

I SERIOUSLY think that you should consider seeing a specialist rather than relying on someone who doesn't know much about dysautonomia, if at all possible.

Best of luck!!

PS Do a google search for DHEA and CFS, and you'll get a plethora of links to studies and such.

[nikigrl8883]

i have a problem here (lucky charms) my endocrinologist left and thats why i am going to see a new one next month in boston before she left i asked her if i should take some dhea suplliments and she said i could take one 25mg a day.....i did for a few days and felt very anxious but who knows becasue i feel anxious alot,,,i stopped taking it when she left becasue who will montior it?! what should i do

[Rosie]

Hi Niki-

If I am reading your post correctly, you seem to be saying that you don't believe the problem you have with breathing is Apnea because it happens before you are fully asleep.

If I got it right, please do a Google search for 'Sleep Onset Apneas'. These Apnea episodes always occur during that light sleep we go through before falling into a deeper sleep, and can cause the symptoms you related. It would be a good idea to have a Study done if you haven't had one.

Good luck to you.

[ajw4790]

Sorry, I don't really have any of the symptoms you described, but they sound awful! I do sometimes get dizzy lying down...

For the rubberband around your waist thing I was wondering if it is something with your diaghram and maybe it having some difficulty working in supine? Probably a weird stretch of trying to reason it out?

I wish you luck with the new dr.!!!

[jjpots]

I have just recently experienced the feeling of not breathing as I'm trying to fall asleep. I wondered if it was due to the florinef I just started because I've never experienced that before. I had a hard time falling asleep because it seemed like I had to actually concentrate on breathing, like it wasn't just happening automatically. I think it's happened about 3 or 4 times in the last 2 weeks so not a ton. I haven't experienced the other symptoms you mentioned though.

Good luck, I hope you find some answers.

JJH