leydengs

That is great, good luck!!!!

Oh yah I can be freezing cold (wrapped in blankets, gloves etc in the summer) and then all the sudden I feel beads of sweat forming all over and I kind of panic and feel like if I don't cool down soon I'm going to pass out!!

I think I saw someone mention this before but does the temperature of water make a difference? I tried increasing my water 2 weeks ago and I had 2 of the worst weeks. I've notice that if I drink cold water my limbs are like ice. I'm always cold anyway but my fingertips feel like they are freezing and I'm starting to feel dizzy and I'm only about 8 oz into this bottle of water.

I had similar symptoms and had to stop taking it. Like dani stated a lot of times doctor will prescribe something for your BP in combination to a beta blocker. When do you go back to the doctor?

diamondcut - Mines not from drugs because I really haven't taken any. I tried some when I was first diagnosed but the side affects were so bad and I was a single mom of 2 very young kids so I couldn't risk it so I don't take meds. I have my thyroid checked but that always comes back normal but than again what's new HA!

When I was in the hospital and in a wheelchair they diagnosed me with autoimmune thyroiditis and they started me on a thyroid med and they tried to blame all my systems on that since your thyroid being off can cause a lot more problems then you'd think, however when the head of endocrinology came to see me she said my numbers really weren't that bad and that my thyroid was not the cause of all of those symptoms. Have you ever been tested for POTS. I know if I'm in the heat for more than a few minutes I become very lethargic. I do know that a lot of people are misdiagnosed with anxiety/depression due to the symptoms of POTS because according to blood tests, MRIs, etc you seem to be a healthy person. They kept telling me that I was unable to walk because I was probably going through postpartum depression (I had just had my 2nd child) and my husband (now ex husband) kept saying "She's not depressed, you don't understand Gwen does not sit still so something is wrong!!" ha! They made me see a therapist anyway. I think the most frustrating part is that you know that something is going on and something is wrong but everytime they do a test either it comes back completely normal or something (ex: Vitamin D) comes back just slightly off or something like that. Just keep pushing for answers and if your doctor seems like they just really don't know then you can always try another one. I have only actually fainted a couple times in 15+ years of having POTS but 79%-80% of the time when I stand up I feel like I'm about to. It doesn't matter if I stand up slower (I love when people tell me that, "Just stand up slower next time" ha) or if I stand up fast, etc. Good luck on finding some answers!!

Thanks Dana, that's always what I thought it was and yes no matter what treatment I try it never goes away!!

NMPotsie - Is there a cure/treatment for it?

Holy crap, have the same thing!!! I have it on my upper back, shoulders and neck. I tan so the spots look white (no pigment). I was told it was a fungus or build up of protein on the skin but no fungal meds have worked. The heat makes mine worse also. The summer I will have a lot more spots but in the winter some will go away. I hate it!! It looks like I had a bad sunburn and I'm pealing so I don't get a lot of questions. If I itch them (sometimes they itch) then I can see dry flaky skin (eczema cream doesn't work either).

Thank you i hate bananas!!

Thank you for sharing your story! I'm so glad you kept pushing to find the right doctor and to get some answers and help. I think that is the key in this kind of disorder.

Relax86 - I can't remember what the steroid was but it was something they gave me through the IV for like 4 hours and then I got a break and did another 4 hours or something like that. I just remembered it burned REALLY bad going in so they have to go back and dilute it more. hippychic258 - I apparently was very lucky (after hear your story and many others), I was only in a wheelchair for about 2 weeks. The steroids really helped. I had to build my endurance back up, I used to have to stop and take breaks when going up the stairs so each day I tried to push a little bit more. I got on the treadmill and started out only being able to do like 5 minutes so I just kept doing it and adding time (as I could) and I built up my endurance. Your situation sounds so much worse, and I'm so sorry for that!!! I wish I had a better answer for you.

These are great sites, thank you!!! Omg that map of where patients are located is really interesting!

This was a great question and lots of good info in here. I get this feeling a lot too and it's horrible!! Sometimes I will eat and eat and eat to try and get the feeling to go away. Thanks for all the great info, I'm going to try some of these!!

I've had POTS since I was a teenager but it got a lot worse after having my daughter and my first ever flu shot. I kept my dizzy spells a secret because I was anorexic and bulimic so I just assumed it was front that (even though I had those spells before all of that). I used to over heat and pass out in games (soccer and basketball). I was in the hospital unable to walk after a bad flare up and just happened to get the only doctor in Nebraska that specializes in POTS. He diagnosed me about 2-3 months later.

I always just say "I'm fine", I have no idea what else to say.

I was in a wheelchair for a couple weeks and then used a walker. I could pretty much get up to the use the bathroom and that's it. The tachycardia started it but I think it was due to that and the fatigue where my legs were just so worn out I had no strength to stand and they shook so badly I had to use the walker for support. I'm so sorry to hear that it is so bad for you, I couldn't imagine!!! Does anything help?

songcanary - how did your test results come out? I have switched to gluten free but have never tested for celiac. After going through numerous, numerous tests and all coming back normal for years(except the tilt table test), I don't like getting tests done. Now that I'm gluten free I do notice that if I eat anything with gluten (even a couple crackers) my stomach instantly goes into knots and starts making all kinds of noise and hurts.

I was in a wheelchair and using a walker. The doctor gave me steroids to build up my strength which helped me to be able to stand up on my own. It took me months to build up the endurance to just go down and up the stairs to do laundry, I remember having to stop half way up the stairs because I was so winded and tired. I'm so sorry for your situation hippychic258, I hope things start to get better for you!!

My hair falls out like crazy. I have to sweep up the bathroom anytime I comb out my hair or do it in the mornings, it's so gross. Thankfully I have really thick hair. I've had to my thyroid checked but of course just like everything else, all results came back normal

I can totally relate, I have times where I am struggling to take a deep breath. I try really hard but I just cannot get a good, deep breath so I yawn a lot. It's funny, I always looked bored in sports because I would be on the basketball court yawning when I would get short of breath ha!

My doctor told me that since I've had it for so many years I will more than likely have it for the rest of my life. I've always heard (in one of those utube videos) that POTS can disappear just as quickly and mysteriously as it appeared. I hope for everyone's sake it goes away!!

I do very poorly in the heat, if I have to be in the heat for a certain amount of time I will all the sudden become almost lethargic and I just want to sleep and my dizzy spells become much worse. It's stinks but if you can avoid the heat that's probably best. That's one of the worst parts of having this is having to tell my kids we can't go outside because it's too hot for me or if we have to go inside because I'm starting to feel really sick.

My son was given that for a autoimmune platelet disorder he had called ITP but that's the only time I've heard of IVIG being used, that's very interesting!

When I have my worse flare ups for some reason my right side gets much weaker and my right leg will shake really badly, making it difficult to walk.