Kristen

Hi, I've been out of town and just saw this - I guess it's a little off topic now but I wanted to get back to you. The doctor both recommended herbs/supplements for me to buy - I went to Whole Foods although she said Cost Co was cheaper - and sold some to me. One bottle I bought yesterday was $7.50, another was $14 for an economy size bottle of Magnesium supplements that I couldn't find in the right strength. This is my only experience with this type of doctor, so I don't know if this is how it always works, but I think it's very fair. Right now we're working more on building up nutrition and strength again because I became so sick on Topamax, so POTS is actually secondary at the moment. Kristen

Hi, Funny you should mention this now...I'm just starting to look for posts on this too. I went to a new doctor on Tuesday who is an MD but also uses Chinese medicine. She thinks I have adrenal insuffiency, specifically low aldosterone - and she definitely thinks that it is what's causing my POTS. We haven't done any tests yet - right now we're going to try to work on it with diet and supplements, because I'm in bad shape from some other medicine, but I'm so excited to have someone with a new outlook on it. I've had POTS for 4 years now and never had this mentioned. She was very positive that she could help. Here's a link to an article I found explaining it a bit. It describes my symptoms pretty accurately. http://www.goodhormonehealth.com/youradrenal.pdf

Hi, I was put on Cymbalta for a few days by my regular doc to see if some symptoms I was having were caused by my Paxil. They weren't and my neurologist switched me back to Paxil for my POTS because he said the Cymbalta may work, but it hasn't been tested yet for effectiveness for POTS. Since I was doing fine on the Paxil, we didn't want to mess with it. Hope it helps though! Kristen

Hi, Did you go to your doctor about the night sweats yet? I'm 25 and I've been getting horrible night sweats too. I also seem to get them if I take a long nap - it probably does have to do with how deep I sleep. I haven't slept a full night through in more than 3 months. I've had POTS for three years and never had night sweats until recently, so I've been bugging my doctors to figure it out. At first the docs thought it was an infection, but antibiotics didn't make a difference. Then they thought it was a side effect of the Paxil I'm on, so I switched medicines for a few days but my POTS was a lot worse and the sweats didn't stop. A few weeks ago, my doctor did some thyroid test and it came back with elevated levels - I don't know what that means, but she said it could cause night sweats. I'm waiting now for the results of a few more tests. If you learn anything else about what causes this, let me know! Kristen

Hi, I tried Cymbalta for a few days. I'm on Paxil for my POTS and my regular doctor thought it was causing night sweats so he wanted me to switch to Cymbalta. My doctor who treats POTS didn't want me to switch because he said it hadn't been proven to help POTS. I tried it anyways - for about 4 days - and by the last day I couldn't even leave the house because I was starting to pass out so many times again. Probably doesn't affect everyone the same, but it definitely didn't work as well for me. Kristen

Hi, I went through the whole routine of misdiagnoses, like many others. What finally helped me get the correct diagnosis - POTS - was monitoring my blood pressure and heart rate. I wrote everything down and when I brought all of the numbers into a new doctor, he instantly said POTS and then verified it in his office. Turns out my tilt table test from three years prior showed POTS as well, but the doctors didn't realize it - they just commented that it was funny my heart rate went up so much. My new doc said most doctors still don't know about this and that he only knew because he read some articles about it recently. Kristen

Hi, I was on florinef for almost a year. I was originally diagnosed as having OH, and they prescribed it to raise my blood pressure, which it did do. It did seem to help a bit , but for me I thought the side effects outweighed the benefits. It gave me horrible headaches and I ended up getting a lot of infections, which the docs said were caused by it. I was also concerned because I read somewhere that it could cause bone loss, and I didn't want to mess with that. I also still had symptoms, even though the doctor said it was working so I must be cured. I switched doctors and just about two months ago I was diagnosed as actually having POTS, and the new treatment (Paxil) is working much betterl. Kristen

Hi, I had a tilt table test that I do not think was done very well either. I was up for 45 minutes, they never gave me an injection and although I was strapped in, I was never told not to move. I was light headed and uncomfortable and my heart rate jumped up 50 beats, but they said the test was negative. They remarked that it was "funny" my heart rate went up so much, but that it must be because I was dehydrated - they said not to eat or drink anything before the test. It was only three years later, recently, that a new doctor looked back at the test and said the results showed I have POTS. I don't know about your doctor, but do make sure he or she knows about POTS - everything would have been so much easier for me if they had realized what my increased heart rate meant at the time, rather than just thinking it was "funny." Kristen

1. Kristen 2. 25 3. POTS - originally diagnosed with Orthostatic Hypotension three years ago, but doctor just changed diagnosis to POTS a few weeks ago 4. 22 - when started having problems and diagnosed with OH, 25 - POTS 5. Michigan 6. Lightheaded every time I stand up and sometimes even when sitting; heart races, sometimes feels like it skips beats; blood pressure either drops or stays the same; vision often goes black; sometimes pass out completely; forget what I'm saying, can't concentrate; feel very cold or very hot; break out in a sweat; face and chest turn red 7. Lightheaded when I stand up but not every time; lightheaded when I bend down or raise my arms above my head; tired; lightheaded during and after exercise 8. Florinef, Neurontin and Depakote (they thought I was having seizures at first) 9. Just started Paxil two and a half weeks ago - actually felt ok yesterday and today for the first time in weeks, so I'm hopeful! Eating lots of salt helps (I live on Chex Mix) and drinking Gatorade helps too

Hi, I was just diagnosed with POTS a couple days ago...for the last few years, since I've been having problems, I have also noticed that my veins are very visible. I can see them all in my arms, legs, chest, stomach, even my face sometimes - I look like I'm blue! Kristen

Hi, I'm new here - I was just diagnosed with POTS yesterday. I've been having problems with getting lightheaded and blacking out for the last three years, but the doctors never took my heart-rate, so they have been mainly treating me for Orthostatic Hypotension. My new doctor just put me on Paxil - I know this is an anti-depressant, but he said it is also supposed to help with POTS. Has anyone used Paxil for this and has it helped? Any side effects or anything else I should be aware of? I'm so happy I finally have a correct diagnosis and I'm just really hoping there is something that can help too. Thank you! Kristen