Tanzanite

Sounds like you should ask the Dr. I get the numb tongue and whole body sometimes and I know that's my POTS (never tried Cymbalta), sounds like POTS doesnt like the Cymbalta!

Florinef is an aldosterone replacement. So confused why it would make you feel better if yours is high already. Of course it helps POTS symptoms though.

If it's just lactose you're intolerant too, have you tried using lactase pills? Solves the problem!

I get this too. Your autonomic system can't regulate itself like a *normal* person's. So it will either over-react when you do the slightest thing or will lag behind then suddenly go into overdrive as it didnt speed up your breathing and heart rate a little like a normal persons and suddenly you'll gasp or get the heart pounding etc

Welcome, another one from UK here. My specialist actually prescribed caffeine for me. He has done a study on it and found it helps a lot of people with autonomic problems. But then, everyone is different!

I've seen Professor Grahame (very nice man) who diagnosed me with EDS and said autonomic dysfunction can be part of it. This was in 2001 and they were only just learning about the link.

The head and eye movements that make you dizzy sounds like benign positional vertigo (something like that!) it's easily cured.

Been on florinef just over a year, brilliant for me, no side effects.

I hope you get some answers. Nothing much to add but make sure he gets his adrenals and thyroid checked.

Yes on both counts. Mostly when I was at my worst. For some reason upping potassium helped the breathing thing a lot. Florinef helped and of course upping salt too.

Thanks for answering my question about what PE is. The last time I heard of PE is when I was running around a field at school (and nearly keeling over afterwards LOL).

Not over 50 but had it as long as I can remember in a milder form until now. I just have a Q. What's PE?

((((HUGS)))) I've been through it about 6yrs ago with a man who messed me around. He made me so ill and I never really recovered from it. I just seem to have got worse as time went by and more stresses came along. So I can empathise.

All you can do is look after you now, don't worry about whether someone is going to want you right now. Rest lots and try to find distractions from the pain he has caused so the emotions don't get to you as much.

I know you wont want to hear this right now but he's saved you an awful lot more of grief had you got married and he's shown he's not worth it. Yes, it is harder to find someone with this illness but if a man's worth having he will see past it to YOU.

I've now been with someone for well, getting on for 4yrs now. Accepts me warts and all, though he's ill too so understands better than the average person.

However, don't think of never having anyone again, you have to get through this part first.

Thinking of you.

It's still mild where I am, still have my air con on. I feel hot all the time.

((((hugs))))

It took me 7 months to feel even slightly better and that was through my own doing. The Dr's didn't have a clue. The florinef took ages to work but I found that upping fluids and salt made it work better and I could reduce the dose a little to have the same effect.

I also needed potassium and that made a big difference, less breathing problems, less weakness etc.

I also use magnesium, calcium and vit D. That also helped somewhat.

However, I am still mostly bedbound and can't do much, I also have other health problems like a lot of others here do which all combined makes me have little quality of life.

Also, get your adrenals checked, can cause those symptoms.

I really hope you get some answers soon, and some relief! (((Hugs))))

Thanks everyone

Think I'm becoming addicted to the ds already LOL Must pace myself! Animal Crossing has my attention, so simple but so addictive (big kids like it too!). Need some friends to visit though!

I think it'll be my birthday everyday this week LOL Feeling a bit happier now. It's as if on your birthday or xmas you feel such pressure to enjoy it and so you get stressed and ill. Last birthday was horrid too, in the middle of when the POTS first started and I was in a terrible state, can barely remember it. I think I was in and out of various states of conciousness.

Thanks Mom4cem.

Well I really over done it yesterday. In the morning my wireless internet wasnt working so spent all morning on and off trying to fix it. I was also disappointed when most people forgot my birthday. I didn't get to do anything I wanted to do, was stressed and I ended up really bad last night. Even my tongue and lips were going numb and tingly by bedtime. I've decided I hate birthdays

Going to be doing lots of resting next few days and playing with my new nintendo ds lite (big kid that I am!).

I've battled with terrible stomach upsets all week, now I have my period and have been in bad pain all day, normally it's gone by lunchtime. I have a horrible feeling I'm going to have pain until it's gone which rarely happens. Of course I'm feeling extra Potsy because of all this, plus I haven't slept properly for a couple of nights, so I'm in a bad way.

Tomorrow is my birthday and I'm so hoping for some relief so I can enjoy it. It would be so nice to be able to switch off all the rubbish, pain and suffering in our lives just to enjoy our birthday to its fullest. Here's hoping!

Breathing was the first thing that hit me too when it all started. I had several different breathing difficulties. I found taking potassium helped with some of it.

Thyroid blood tests tend to lag behind the symptoms so unless your tests results show a real problem, they don't treat it, it's crazy. The 24hr urine test for T3 and T4 tend to catch it though so ask for this if you can, along with a blood TSH and a must have is a thyroid antibody test. Mine was extremely high.

Saliva tests are better for adrenal insufficiency than blood tests. The blood tests tend to be better to establish whether you have Addison's or not.

I also get the hot thing, all the time, though last few days I've been cold but then I've been battling with really bad stomach issues this last week. Last night I woke up boiling hot and sweaty. No one's put it down to anything though.

By the way, if you get some adrenal and thyroid glandulars they help to support them but doesnt give you any medication. Don't take them before tests though as it'll interfere with the results.

No problems, couldn't do without it. Have been on it for over ten years.

Maybe not quite the same but I read once about a man who had CFS etc and he went on a trampoline, it shocked his nervous system and he was well from then on. Amazing!

I'm hot all the time. I still have my air con on!