Introduction

[sarahm]

Hi everyone,

I wanted to introduce myself. My name is Sarah I am 31 years old and live in the Boston area. I developed POTS one year ago. It came on extremely suddenly and out of nowhere. I have always been extremely active, and even played college soccer. Suddenly I was in the hospital bairly able to get up to go to the bathroom. I had constant dizziness and nausea, profuse sweating, extreme fatigue, unable to retain water, and heart rate over 140 upon standing.

I have been slowly getting better since then. It has been very slow progress but I went from living with my parents, using a wheelchair, and needing help to shower. To living on my own again, exersicing, and cooking my own meals. My constant dizziness, nausea, and sweating have gone away. My heart rate has stabalized to about 100-110 on standing. And all this without much medication. I tried florenef early on but it didn't do anything for me so I went off after about a month. I was on Celexa prescribed by a dr that though I was crazy, but I am tapering off as my POTS dr thinks if Im not depressed it is useless.

I just saw the dr yesterday. And he is going to try me on a low dose of midodrine. I am curious about all your experince on this drug. For me this will be the first real attempt to use medication. I have never had any BP or fainting problems so I am not sure how useful it will be for me. He said it should help with the fatigue, which is my major symptom at this point.

Also interesting to note is that my dr put me in a research study which I completed a few weeks ago. I don't have any results from it yet, but I hope it will help them learn more about POTS. It was not fun, by the way.

[jpjd59]

Sarah:

Welcome! I am sorry to hear that you have POTS but glad to hear that you are getting better.

My 23 year old daughter also developed POTS suddenly (after a viral illness). She came down with symptoms in July 2011 and was diagnosed in November 2011. One day she was an active college student living away from home and the next day she had to move back with us (she has been with us for the past 8 months).

I am so encouraged to hear that you are getting better. I also notice some improvement in my daughter but it is VERY SLOW.

She has not tried Midodrine because she has not been able to tolerate any meds but I'm sure that some people on this forum that have tried it will let you know if it has worked for them.

I would love to hear the results of the research study that you participated in. Please keep us posted..

Pam

[HopeSprings]

Welcome Sarah. Sudden onset POTS is so baffling, isn't it. Can you think of anything that might have triggered it? I'm not sure about Midodrine for fatigue. I tried it a few times and felt like I had been hit by a truck and ended up on the couch incredibly fatigued. Everyone's different though. What type of research study was it? Were they looking at something in particular in POTS? It's amazing that you've come out of most of this in only a year. Hope it resolves completely for you!

[sarahm]

Pam I can definitely relate to your daughters situation. Sounds very similar to mine. Although I haven't be able to identify any trigger like a virus. I ended up living with my parents for 9months. They took great care of me, but I was so happy when I was able to move back to my own house. My improvements were so slow they were practically unmeasurable. It took a lot of trial and error. And mostly I could only tell I was improving on a month to month basis.

Naomi, no I haven't identified any trigger. They said its possible I had a virus concurant with the POTS symptoms and it was just hard to tell what was what. I was definitely very sick looking. The dr that did my first tilt test said I looked too sick to have POTS, as most people only get symptomatic upon standing and I felt sick all the time. Don't know if that is true or not.

The research study was testing a couple things. First to try and classify people into nueropathic or nonnueropatic. That involved a lot of tests looking at my sweat response and ability to detect temperature. The second part was to test the effects of nitric oxide on POTS. Nitric oxide controls the pliability of the blood vessels so they can contract or relax. So one day I got the nitric oxide and one day the placebo. Then they ran a million tests to try and stress my body, bring out my symptoms, and make my heart rate increase. When I get the results I will share with you all.

[HopeSprings]

I was definitely very sick looking. The dr that did my first tilt test said I looked too sick to have POTS, as most people only get symptomatic upon standing and I felt sick all the time. Don't know if that is true or not.

The research study was testing a couple things. First to try and classify people into nueropathic or nonnueropatic. That involved a lot of tests looking at my sweat response and ability to detect temperature. The second part was to test the effects of nitric oxide on POTS. Nitric oxide controls the pliability of the blood vessels so they can contract or relax. So one day I got the nitric oxide and one day the placebo.

Most of us feel sick all the time, not just from standing. Surprised a POTS knowledgable Dr. would think differently. I love that they're looking at neuropathic vs. non-neuropathic POTS. So many of us have neuropathy. I think it's a huge connection and I was hoping researchers would look at this more closely. Curious - when you got the N/O did you feel anything? I know you didn't know which was placebo or N/O, but on either occasion, did you feel anything from it -either better or worse?

[sarahm]

I could tell I got the N/O because my resting heart rate went from about 70-50. But other than that, no there was not much difference. Both days my heart rate was over 130 during the tilt test. I got more nauseated the day with the placebo but that could have been coincedence. Also the placebo was the second day and I was really fatigued still from day one. I couldn't finish the tilt test on the placebo due to nausea. And they did a modified oxford test, which uses drugs to induce an increase in hr and bp. I almost passed out on the N/O but not on the placebo. So overall from my perspective it was not helpful, but the data might end up showing something different.