Tanzanite

I get it but I dont know if I have MVP as no one has done any heart checks on me. I feel physically exhausted and awful but inside I feel wired and a massive urge to do things even though I'm too ill to do very much. Sometimes I can do alot (for me) others hardly anything but I can't stop myself. Then I can't sleep as I feel wired.

I suffer for a week after, can barely breathe, in so much pain and stiffness cos of EDS, heart racing and just generally feel dreadful.

I use old fashioned Chlorpheniramine, it is one of the drowsy ones though. I am lactose intolerance so I get stomach pains and upset stomach from them though.

Well it's related to cortisol but it's not cortisol. You only really need to worry about the cortisol effect if you're taking more than 2 1/2.

I've been on it for 2yrs and for me, no side effects apart from a bit of face puffiness if I need a little extra such as around the time of the month. For me, florinef is what insulin is to diabetics: a lifesaver!

Everyones different but try not to worry or I find that when you worry about a new med, any symptom you have you're worrying if it's to do with that, you're on alert all the time. It does take a while to work properly and it wont work as well without salt and extra fluids.

How strange!

Same here with regards to supermarkets or huge shops with bright lights and aisles. Never been in an art gallery tho.

You may want to have some muscle testing done by a neurologist to make sure you have not developed a neuropathy.

I found that the physical therapist I work with has been very helpful in documenting the weakness in my legs and arms. The exercises were helpful, but the IVig really made the difference. I am normal in my legs for the first time in over 1 and 1/2 years.

IVIG is not for everyone and it has some pretty tough side effects, but it is working for me.

Rhonda

I know I do have some problems with cold hands and feet etc, the specialist (endo) said I had autonomic neuropathy so I'm guessing it could be that.

rqt9191: I haven't tried compression stockings or midodrine, no one wants to know in the UK and dont have a clue. I was lucky to get Florinef (though I actually put myself on it, then they said they'd continue prescribing it for me)

I tend to not see a Dr unless it's almost an emergency as all I get is 'it's all in your head'

I've had the really heavy legs thing since th ePOTS became bad, I believe that's because of blood pooling? For about 6mths mostly at night or in the morning when I've been in bed for awhile then get up, I get the heavy thing like my legs are made of wood and an achy type feeling thats hard to describe but my legs feel also feel weak and my legs keep giving way.

Just now, I got out of bed after being sat in it for about an hour filling out disability forms and I can't stand up properly, my legs constantly want to keep giving way. Does anyone else get this?

My mum had this done last Fri due to severe anaemia. She also had an Endoscopy at the same time. She already had gastritis and polyps in her stomach but this time they said she had H.Polyri as well as a hiatus hernia.

Seems like some of us with POTS also have a thyroid condition.

I have hashemotos thyroid which is basically the same thing as hypo-thyroid, but it can change to hyper-thyroid. It's autoimmune, meaning your immune system is attacking your thyroid gland. My anti-tpo blood levels are very high---like 1,600, and normal is 30 something.

I know some of the same symptoms can occur between POTS and thyroid dysfunction.

I know a lot of studies are being done.

Maxine :0)

Wow, I thought mine were high at 509!!!

No tests. Just diagnosed from symptoms, especially as I already has a diagnosis of Autonomic dysfunction from years ago.

Yes, exactly the same. My tongue feels like it's all shrivelled up

Has anybody's dentist recommended something that would help us to not get so many cavaties? It is especially difficult to keep sugars out of our mouths since we often have to drink Gatorade or have a snack between meals. But I've heard a dentist say that if we brush our teeth too much that it is bad for our gums and can wear enamel off. Would chewing on sugar free gum help? Or maybe swishing with Listerine after drinking Gatorade?

My dentist recommended Colgate Flouriguard Gel-Kam. It stops decay in it's tracks (though turns the decay dark brown) and also stops decay happening.

I have lost my teeth due to EDS. I only have a few left but they will be gone probably within the next yr.

Keep a detailed report of everything that goes on between you and your employer. Date it as well. Try to get hold of any copies of notes your Dr gave you for your employer, things like that. Try and get a copy of the mysetry shoppers report too.

In the UK we have something called Citizens Advice Bureau which gives free legal advice, if there's anything like that where you are, go and see them, take your detailed report etc See if they can advise you. Make sure your Dr is aware of everything thats going on.

You may not need to take this step until/if your employer sacks you. But is worth getting some advice before if you can.

Employers go to an agency which hires mystery shoppers to report on their staff. So it's the company you work for that have called them in.

I don't know why but my instant gut reaction is that they called in a mystery shopper to acheive a way of getting rid of you without being blamed/taken to court for disability discrimination if they do sack you. Could be wrong but strong feeling that's what could be going on.

You know it amazes me all the help those in the US get, even those who think they dont have much help. You have a Dr who's dealing with one part of POTS/EDS, another for another part etc etc

Here in the UK, I have NO help whatsoever. No one wants to know, they ignore everything I say, they don't give a **** basically. I have no EDS Dr, the nearest specialist is 200 miles away. I saw him once to diagnose it (he came to me, reluctantly and I had to pay for it).

I'm bedbound which makes seeing anyone impossible. All I get is, we'll refer you to a psychiatrist/psychologist. I've been verbally abused by Dr's, told to do more excercise when I was semi-concious and barely able to breathe, I could go on. Hardly any Dr's I've seen have even heard of EDS let alone POTS or know what to do about it.

All the rubbish I go through every single day, Dr's here don't believe me, think I'm making it up. When in truth I can't even wash or have a shower even with help for several months at a time, I can barely even walk to the next room, I can't even be left alone in the house for more than half an hour because of being so ill.

I hate all this.

My neck is so damaged by EDS and the muscles get so tight I get the worst headache (much worse than a migraine), scalp pain and neck tightness/stiffness and pain, sometimes I've had this everyday for 4mths. Usually it's stress that causes it and it's the muscles in my neck just under my skull that tightens like a drum which causes all the pain. All my glands in my neck come up too, though I have one gland at the top on the right which is up permanently and gets worse at this time. I also have arthritis there too.

It can give me earache, make me feel sick and also feel so ill generally as if I have a really bad virus.

Does anyone else get this and also when I'm like this the POTS or rather the breathing problems I get with POTS becomes worse at that time. I know there are some breathing nerves in the neck and wondering if my neck is so bad it's interfering with these nerves. Anyone else?

I can't go without my florinef even being late with it for an hour is bad enough. To me, florinef is what insulin is to diabetics: can't do without it!

These are the symptoms I get just from getting myself a drink, but I do suffer badly with POTS. I find over doing it can cause adrenaline surges which can last from an hour to a couple of days and make me feel that way and worse.

As someone else said you will learn your limits.

Try some hypnotherapy cd's. Glenn Harrold's are excellant. The more you use them the better the effect. I also found it helps with joints/muscles and stomach problems such as IBS, sleep problems and general anxiety.

If you have EDS DO NOT have laser eye surgery. I asked about this to my optician, he said my eyeballs would disintergrate

I have suffered from the age of 8 (yes you read that right!) until approx 9mths ago, almost 22yrs later. They suddenly cleared up. I don't have oily skin so can't/couldn't use the usual stuff for spots. I found a good retinol cream along with exfoliation done the trick.

I have the exact same thing! I can't lie down in the day due to low BP and awful symptoms as a result: semi conciousness, heart racing/pounding, can't breathe. whole body goes numb, weak etc etc.

I can't give you any answer, sorry but would love to know why this is. I've only had it since POTs became severe. I only take Florinef.

I've taken it for over 10yrs, works great, no problems.

It can be triggered by extreme stress, which is why it's so easy for doctors to blow it off as psychiatric. People can have lots of episodes during sleep at waking, so it wouldn't surprise me.

You might try decreasing your carb and salt intake (although MANY of you are very dependent on sodium, it is a real trigger for people with PP) Of course unless you are diagnosed with PP by an expert, don't do anything...but that is the typical treatment.

When I was at my very worst, I discovered I was living on high simple carb type foods, like rice, cream of rice cereal, toast, etc. The real problem is so many overlapping things, so you treat one thing and it disturbs something else...very frustrating...

Interesting about the carbs. My whole diet is mainly carbs! I don't eat much meat and I have to be careful what I eat due to stomach probs (don't we all!) and so I mainly eat bland carbs! Things like porridge, white bread (bad, I know) etc.