Tanzanite

I don't know about genetic but I get paralysed during times of extreme stress or no sleep and when I'm not asleep by a certain time then I get other horrible weird symptoms too.

You can get a saliva test kit you do at home. They are meant to be more accurate than blood tests.

Actually, saliva tests are more accurate as they tell you what's in your tissues and available to be used by your body rather than what's just in your blood.

Good luck with the test tho!

I get the opposite. Sneezing then a coughing/choking attack that ends up with me heaving. I also get the choking attacks randomly, if I've done too much, if I have things like a cold. I have awful hayfever with a scratchy throat which lasts from Feb-Nov so that makes me cough/choke too.

Make sure you check out candida too, that can cause all sorts of weird and not wonderful symptoms!

Going though anti-fungals myself at the moment, and my general health is already a little better, symptoms of which I put down to POTS. I still suffer badly with POTS but some things are a little better.

Poor Flop. Sending hugs your way. Get better soon!

Maybe print this thread out for flop to read, if she's up to it.

I get the exact same thing. My pelvis is misaligned because of EDS, and nerves get trapped etc I sleep on my stomach which stops it happening but halfway through the night I need to sleep on my side due to sinus probs. I use a very soft bed with lots of give in the spring tension so there's less pressure. Don't get a memory foam bed they actually make it worse as they cradle you so you dont move which makes you stiffer and more pain plus the foam is hard even though it 'gives' I was in agony after laying on one for only an hour. I put a feather and down mattress topper on the bed too.

No u are not alone, i use to think i was so weird before being diag i would go to watch my sons ball game and start feelin as if i would die after 10 min or so. I hate it cause it is hot here in Alabama, and my bills are way high, and kids fuss cause its cold . But what makes it worse is i miss my sons daytime games and cant take them swimming at the beach, too much for me. I feel as if i lost out on being normal, i had to stay in the hotel when we went to six flags, and it was only 70 or so. Gosh, it stinks dont it. But I have heard that they have something for people they use it alot for ms patients, but it is something to keep u cooled off, i thought about talking with my doc about it, so maybe i can at least watch some of my sons games without having to run the ac in my gas hog!!

Good luck

Donna

Do you know what the drug is?

tanzanite -

i've been on continuous birth control for years and am now primarily in/on bed. on "good days" i can get to the bathroom (a few doors down the hall) a few times (i also have a commode right next to my bed) and/or may move a few feet from bed to couch or recliner but other than that i'm pretty much immobile. i do do leg exercises & strech while in bed as able but for description purposes i'm considered fairly immobile.

weight-wise i'm on the lower end of normal/average these days though i have been anywhere from where i'm at now to slightly overweight at times over the years.

none of my docs are worried about blood clots for me (or any other complications) in relation to any of the rest of my health issues. perhaps it would be different if i were wanting to start birth control for the first time now but i'm not certain. i actually had blood clots in my subclavian vein this past august but everyone decided it was solely related to my broviac line; i asked multiple doctors and no one thought my being on birth control (or procrit for that matter, which also raises the risk of clots) had anything to do with it.

when i started birth control i was a lot more active and the improvement in my OI/ reduction in syncope that suppressing my periods allowed actually was instrumental in allowing me to stay more active for longer than i would have been able to otherwise. we're honestly not sure how much it helps me anymore but no one wants risk making anything worse at the moment. i've also had some abnormal ovarian cysts in the past which is an indication for being on birth control.

obviously everyone is different but for me the benefit outweighs the small risk. i've been to docs (autonomic & otherwise) all over the country and they all agree.

hope this helps,

melissa

That's so unfair, I feel hard done by now. Everyone just refuses to give me b.c pills. *Sits in the corner and moans*

Can I ask all of you that are on b/c pills what your level of mobility is please.

The reason I'm asking is I was on Cilest (I think it's called Alesse in US) some time ago and it was wonderful for me. It's the only pill I've ever been able to take. However, I'm not allowed on it anymore or any pill due to high risk as I am pretty much in bed all the time and I'm overweight. I suffer so badly with periods.

I was thinking of trying the new progesterone one Cerezette but I'm wary as in the past I've tried pretty much all the mini pills and bleed every 10 days with worse pain. I've begged Dr's to do something about my periods but they're not interested. Right now I'd gladly have a hysterectomy!

How do you figure out if you are dairy intolerant? Do you just eliminate it all and see if you improve?

And how do you know if it is just lactose intolerant or dairy intolerant?

I know that milk makes me feel much worse but I've never known if I'm completely intolerant, or if it's just hard to digest and so it makes me tired.

There are tests doctors can do. But one you can do yourself is something like drink 2 glasses of milk together, wait a few hours and see if you react. Then on another day eat lots of cheese in one go. If you react to the milk and not cheese you're lactose intolerant. If it's cheese then you're allergic to dairy.

With me, I suspected it when last year I had homeopathy hayfever pills. As it's pretty much all lactose, after taking a couple, within a few hours I had awful stomach pains, gas, felt sick, and then had an upset tummy. It happened everytime I took them.

Thanks everyone. I was starting to think I was a bit weird!

The weird thing is, when the POTS was mild (most of my life) I was always sooooo cold. I prefer being cold than hot.

Willows Thanks do much for your post. That's really nice the owl thing. Sometimes I do wish I had oxygen but I don't have a cardiologist. Once my endo diagnosed me that was kind of it from him. To be honest I dont have the greatest faith in him as I know for definate I was extremely low on potassium and my health was worse because of it and all he said was, there's no need to check potassium levels I improved somewhat by doing it myself, risky I know but I think I would have had a heart attack or something had I not done something about it. I feel so on my own with all this and I'm fed up with Dr's all my life saying I'm depressed or it's all in my head (even though I've seen 2 psychiatrists in the past who both said it was physical, not mental). I kind of keep myself to myself unless I absolutely have to see someone. But then I guess we all know what it's like with so many useless Dr's! I almost wish I was in the US so I could see Dr Grubb!

Amby I so don't wish to live in Arizona with this illness!! You poor thing.

What a life, eh?!

I have the feeling I'm going to be alone on this one but here goes... my heat intolerance has become so bad I need the ac on permanently apart from if it's less than 2c in the day/night. I cannot stand the room being more than 18.5c and sometimes even then the air feels stuffy and warm to me and I need the ac to breathe better.

In any case, if I don't have the ac on, I get the same symptoms as when I lay down (see my other post/poll on laying down) Such as can't breathe, I get mega hot and sweat like a pig. I get all drowsy as if I'm going to drift into semi-unconciousness. I feel weak, sick and just terribly ill, heart starts pounding and racing too.

I dread to think what I'd do if I had to go anywhere such as a specialists appointment as there's no ac in the car or hospitals here.

It's almost as if my body has got used to ac and I can't turn it off in winter anymore. I used to turn if off end of Oct until March/April and now I can't and the bills are huge! Our latest electricity bill for summer was ?280 (approx $541)

Anyone else? Any tips how to go back to how I was?

Whereabouts are you flop? PM me if you dont want to broadcast it on the forum. It's just if you're near me, you could go see my endo who diagnosed me on the spot and might be able to help with the wheelchair thing. Can't guarantee it but worth a go.

If you're just lactose intolerant (like I am) you can just take lactase pills before you have anything with lactose in. Problem solved!

Usually it means that if your cortisol level is normal and DHEA is low then you are in the first stage of adrenal insufficency. I was told this by a Dr and I have this.

Mine's always between 96-97. I always feel hot though.

I get these but I'm 29. I think it's POTS but then I also have a very low oestrogen level (not menopause).

Because of the EDS Ive lost most of my teeth. They tend to be looser and decay rapidly so I've had all but 8 extracted. I have it done at home as I'm too ill to go out. Althought it does upset the POTS somewhat for a while after, it doesn't seem to be a long term thing and I'm sure the florinef helps with this. I just load up on salt and fluids before and after too.

Because of the EDS the local anesthetics don't always work on me and yes I've had teeth pulled when they haven't worked. It's painful for a short time but not as much as you'd expect. The POTS did flare up 10mins after (prob due to the shock!) and I almost passed out (I'm not a fainter, at least not so far). But it didn't put me in a POTS hole.

I'm not suggesting you have it done with no anaesthetic but perhaps you can ask if there is a different type you could have instead.

Oh yes, I get this too. It's horrible (hugs) Not sure what it is but wondering whether it's something to do with a build up of lactic acid. Maybe someone else will know.

I can't do stairs so I'm stranded on the first floor of the house. My breathing is so bad I can barely get any oxygen in if I do the stairs and I feel as if my breathing will stop and this carries on for hours and hours after. My legs are heavy, weak and shaky too. It takes me a week to recover after using stairs. I really need a stairlift but it's not possible where I live.

You're not the only one. I cut back the night time one from half to 1/4. That was fine but I just cannot cut out the 1/4 at night time. I just dont sleep, heart racing and all sorts. It is a powerful drug and even just 1/4 makes a big difference.

Yes. I have systemic candida and I dont get the usual symptoms down there, I just feel sore and can feel sore when going to the toilet.

When I was on the pill some time ago it did wonders for general health. Oestrogen increases blood volume. Unfortunatley they wont let me have it again due to lack of mobility.

When I told one of the doctors I saw at my disastrous trip to Mayo Clinic that I was concerned about glucocorticoid effects from Florinef, he sneered at me and told me it was an "old wive's tale." I told him that I have worked in the pharmaceutical industry for several years and was unaware of the FDA ever requiring old wive's tales to be included in the prescribing information for a drug. Incidentally, I grew such a pot belly while on Florinef that a friend of mine who is an Ob/Gyn came up to me at a party, patted my belly, and asked me when I was due. I laughed and told her that it was just weight gain from doing 'roids.

I stopped using Florinef after my health improved somewhat. I'm using licorice now, and my tummy is flat again.

I definitely know what you mean about the pot belly. I look like I'm 6mths pregnant!