ellen

That video has my blood boiling .Grrrr- I'm 51 - how much longer do I have to wait to "outgrow" POTS?

My daughter is 21 and SHE still faints.

And if POTS is so "common" (one out of a hundred) why have all my doctors been unable to diagnose me for so many years?

It is so irritating to see that "expert" give such misleading information. Isn't there something that can be done to balance that misrepresentation?

What meds are you guys on? I suffer with cold hands and feet because of hypothyroidism and take Armour Thyroid. I am extremely cold today (body temp of 95.7) but I took an extra half dose of thyroid to help warm up.

Heat also makes me uncomfortable, that's when I feel like fainting.

For those of us who hate compression hose, (they are SO hard to get on, and so uncomfortable to keep on), I tried the lightest grade (15-20 Hg) which I got at CVS, and I love them. Not as much support, but better than nothing, which is what you have if you leave the heavy duty hose in the drawer. I tried the open-toe compression hose and found they squeezed my toes as if they had a rubberband around them, there was no room for the blood to circulate back and the toes got red and swollen.

This way I have some support, but I don't get too hot.

I loved prednisone!

I have only had it for a few short weeks for spring time allergies, but yes, it does make me feel so much BETTER! The side effects are so serious, that my allergist only prescribes a small amount, but the change is DRAMATIC as soon as I take it, within an hour I feel cured. Maybe there needs to be a study on this.

yeah! Good news AND a laugh!

An herbologist told me a month ago to try Ironbound island seaweed, especially Dulse. I haven't had blood volume issues in over a month! It's made me feel so rejuvenated and a lot less bloated than table salt!

YES, I use DULSE too- North Atlantic seaweed, from the healthfood store. I love it because it doesn't taste fishy- I tried all kinds from the Asian market, and none are as tender and mild.

Also I drink V8 for the sodium- about 10 times the salt in gatorade, and the Potassium which is equal to 2 bananas, plus 3 g protein and fiber.

Lisa-you have come to the right place! Don't give up, you will find alot of help on this site. We are not all doctors, but we have all dealt with them

I just visited my ALLERGIST, who is wonderful and has been treating me for 12 years. When I told him I had been diagnosed with POTS (with his Harvard diploma on the wall), he said had never heard of POTS, and listened attentively and asked questions.

Doctors are just learning about dysautonomias, so don't be discouraged, there is hope.

When I found this site, I got enough information to go to my PCP, he sent me to a cardiac EP, I got diagnosed right in his office, no further testing, I'm on Florinef and I am doing quite well. Welcome to the forum!

Amby- I did the South Beach with my husband and I also lost weight right away--one of the side effects of long term use of Florinef is carb intolerance, so it's a good diet for me.

We mainly avoid all junk and processed food, and substitute an extra vegetable for the starch at each meal.

We keep nuts in a candy dish, celery, cheese and lunch meat in the fridge for snacks.

AND his blood sugar, cholesterol, triglycerides ALL came down to a healthy range!!! It's been 3 years now.

Roselover,

Re: the shower chair, is it possible to leave a sign on it like "Reserved for handicap use" - slip it into a zip lock bag, and leave it there before you go swimming. Or ask the management to provide a sign.

I bought a heart monitor watch, water proof for swimming, and it helps me pace myself. It has an alarm when your heart rate goes either too high or too low. It also has a timer. I love swimming with it. :lol:

Yes! I have to turn the electric blanket on BEFORE I get into bed and turn it off before I fall asleep.

Later in the night I often wake up HOT and kick off the blankets. Seems like my body's thermostat is broken.

Me too- my feet can be sweaty when my body is cold or my body can be sweaty with cold hands. And I'm post menopause.

I use baby Powder to help get them on- it also makes them less sweaty.

Thanks for that info- it's good to know. I often have to spell it out: "Postural Orthostatic Tachycardia Syndrome" before people (especially medical/dental ) understand what I'm talking about.

I turn the electric blanket on before I get ready for bed.

Or put your socks in the dryer before putting them on - two pairs!

Tearose, I always bring an empty water bottle to the airport. They will let it through security, them you can refill it on the other side from a fountain. I'm always DRY on the plane, so I bring a cloth to wet and run over my face.

Also Zycam makes a soothing nose swab that kills the rhinovirus that spreads on airplanes.

I hope you have a successful trip and keep us informed!

Has anyone more information on this recent study using octreotide and midodrine to treat POTS? It appeared in Springer Link at this URL:

http://www.springerlink.com/content/1851hr1580678395/

I was hoping to see a discussion of this study here.

This always happens to me when I have blood drawn. I have learned to ask to recline rather than sit.

I also hydrate beforehand with water, and V8 for salt, potassium and sugar.

I usually feel weak or tired the whole day, so I don't plan any activity that day.

I also have a vertical split on my thumb nail which often cracks below the tip and splits down the nail. Ouch.

I hesitated to post because I assumed it was unrelated to POTS. I thought it was from hypothyroidism, but that seems to be quite common with us potsies.

I'm eating potato chips right now !

V-8 is much higher in salt than gatorade, and has more potassium.

I keep a candy dish with salted nuts on the counter and carry Seaweed in my car.--hard to find the kind that doesn't taste fishy,( I love Atlantic dulse), but that's a matter of taste. And it's good for you.

Jenwic- yes, I had the same experience with florinef raising my blood pressure.

You should definitely talk to your doctor because this is a serious problem in the long run. I have cut my

florinef in half with good results- my blood pressure is around 110/70-but you should not stop taking florinef

without consulting your doctor, (as you probably have read on the label). I still need it to avoid the faintish

feeling when I stand up, but half a dose is enough for me.

Nikigirl- I have the same problem. I can't stand still for very long before my heart rate goes up, and vacillates up and down until I have to sit. I do exercise and feel much better for it. It's like a bottle of juice that separates when standing on the shelf; you have to shake it to get the liquid moving inside.

Ernie- thanks for the update- it's encouraging to hear you're getting the cooperation you deserve. Hope you don't ever have to go through an experience like the last one again.

Dear Ernie,

I am so sorry you had to endure that!

Why not discuss this with your PCP and ask him to write up a plan that you can bring with you to the ER.

That way, you don't have to convince anyone that you really ARE sick and just HOPE for a competent doctor.

OK Kady, now you have all of us on your side. Write down your concerns just like you did here, bring them to your doctor and and let us know how it goes.

You ARE sane, you do have valid symptoms and your doctor needs to hear from you. Hoping you feel better, Ellen

I have had POTS for over 15 years but was not diagnosed until last year at 50. I was so frustrated from seeking a diagnosis for so many years, that I gave up hope and learned to live with my condition.

I suspect there are others in my age group who have had the same experience and are living without any clue that POTS is the cause of their illness. Perhaps the fear of being labeled a hypochondriac keeps them from mentioning it to their doctor.

I don't know how anyone can claim to know the long term effects of POTS since it has only recently been recognized, and there seems to be several forms of the syndrome. I feel I have improved with time, but I still have to pace myself, watch my fluid intake, rest often, etc. What really bothers me is the mental fog-memory loss. O well, maybe they'll find a pill for that.