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Pots/ Ist


Allerian
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Hi,

My name is Julia and I'm 23 and was diagnosed with Inappropiate Sinus Tachycardia/POTS last year. I also have Lupus, Hashimotos, Raynauds and a kidney disease that affects my electrolytes called Gitelmans. I have a lot of problems with my heart rate and exercising. I did a 24 holter moniter last year and the found my pulse stayed around 110, 180 with walking, and down to 60 at night. I also had a stress test. They had to stop the stress test because when my heart rate got up to 200 (within three minutes of starting) my blood pressure dropped below 80/50 and I got extremely dizzy. I also have pretty low blood pressure. Last week it was 99/66. My first electrophysiologist prescribed me florinef which my nephrologist forbids me to take. I can't take it because it makes you absorb sodium (good) but makes you urinate out more potassium. I have problems keeping my potassium high enough so florinef is not a drug I can take. I have tried gatorade and it doesn't alleviate the problem. Today, I went out walking it was humid and 75 and I had a really hard time. It's so frustrating because I used to be a runner and I do taekwondo. It's so hard now because I almost collapse every class. When I returned home from college, I had to consult with a new electrophysiologist informed me there was nothing he could do for me. Is that true? I am attending medical college this august and might get a second opinion? Does anyone know of good Electrophysiologists/Mds specializing in dysautonomia?

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I havent seen him -- yet (have an appt to see him in december), but those on this site that have seen him say he is absolutely WONDERFUL. His name is Blair Grubb, he is an electrophysiologist and specializes/interests in POTS/autonomic dysfunction. He is in Ohio. Perhaps someone could give you more info on him.

Good luck and sorry for all you are going through....

-Angela.

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Sorry to hear you are having such a difficult time.

I also had a number of autoimmune problems, and an immunologist was able to help me. It may be worth checking into. I believe my autoimmune issues caused my POTS. Once my autoimmune disease was in check, my POTS has been a lot better. I did need other meds for a long time, and will probably again if my condition flares up.

Rhonda

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Sorry to hear about all your problems. The one thing I will say, is never give up on finding treatment to help you feel better. I tried many meds, and different treatments. I gone for a 2nd, and 3rd option, at Mayo, and the clevelvand clinic. I afound that each place you find new information, and differnent treatment ideas. I think it would be a good idea for a 2nd option, a new look at your records, and running new test may find a new idea, or find somthing else that could help you.

One thing that is nice is there are many drugs that can help out there. Right now I am on a combo of IV fliuds, procrit, bb, and starting to seem some improvements. The this I can say is its somtimes a slow go to find the right meds, kind of trail and error, but I beleive it worth it to find the best quailty of life eaxh of us can have. I am trying to find the right mix along with my lyme treatment so that I can one day return to work!

Hope you start feeling better soon!

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Hi Julia,

Although there isn't a fix-all cure for POTS, there are many treatment options available. Keep looking for a doctor who is qualified and willing to treat you. There is help out there!

Have you checked out the Physicians List on the DINET site? You might find a doctor on the list who is close to you. Also, if you're comfortable letting people know what state or area of the country you live in, you can ask on the forum for suggestions for doctors.

Also, make sure you check out the "What Helps" page. It has many medications and non-medicinal treatments for POTS.

I hope that you can find a doctor, treatment, and good help soon. Hang in there! :)

Rachel

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Hello Julia -

I'm also 23 and was just diagnosed with POTS. Good luck in your studies at the medical college, I hope you get some answers!!

I just wanted to comment on your stress test. I had one a couple years ago and my heart rate went up to 200 within the first few minutes and I had severe chest pain. No one was measuring my blood pressure, but I'm sure it was dropping as I was feeling so awful. Surprisingly no one stopped the stress test. They said that I just wasn't "fit" enough and needed to exercise more because my heart rate shot up so fast and didn't go down. I guess I'm going to have to go back and have another one :o , what fun...

Talk to the disability services at where-ever you are going. I had a meeting with them and explained my POTS and they are quite helpful in getting me the assistance I need. Especially if you're going to a medical college, they might know something about it. I'm also going to be going to a medical college in August and just knowing that I can walk across campus and get the help I need is a load off my mind.

I don't know where you're from, but in CT, I've found that Dr. Tendler is great! She's a cardiologist who specializes in low blood pressure.

Sara

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