smatuszak Posted August 29, 2007 Report Share Posted August 29, 2007 Hi Everyone,I have been reading your posts for a few months and am now a member. You guys have helped me realize that I am not crazy and that most doctors don't have a clue.I believe that I have had pots since early childhood. My problems never became disabling until Feb. 05. I had the worst headache of my life--it hasn't gone away since. It just waivers in intensity. They told me that I had migraines. That didn't answer all the other symptoms that also showed up. Not being able to stand for any period of time without feeling sick and sweating--numbness and tingling in my head and neck--serious brain fog--not being able to speak properly--trouble with coordination--only feeling half-way decent sitting in my recliner--along with many other wierd things.A few months ago, I had the TTT test at my request---I failed, no surprise. My husband was doing research for me and told me I had Pots. I laughed at him. After discussing it with my neuro and showing her info--she agreed. So now, I am scheduled for further testing with an autonomic specialist.Anyhow, my question is: Is Pots just life altering or is it life threatening? Will the symptoms get worse as time goes on? I appreciate your time and opinions. Thank you!Pacer412 Quote Link to comment Share on other sites More sharing options...
Rachel Posted August 29, 2007 Report Share Posted August 29, 2007 Hello Pacer,Welcome to the forum! I'm glad you found us. I'm sorry to hear that you've had to struggle with your health for so long. It is good that you finally have a diagnosis; that is definitely a step in the right direction!POTS is not life threatening. It can be debilitating and life altering, but it isn't life threatening. For some people their symptoms get worse as time goes on, but most see improvement with proper treatment. Now that you have an accurate diagnosis, you can begin proper treatment and will hopefully see improvements soon. Rachel Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted August 29, 2007 Report Share Posted August 29, 2007 Rarely life threatening (multisystem atrophy -msa); definitely life altering for all of us. The degree of alteration may vary from person to person, and may also vary within one person based on how much sleep you've gotten, how much activity to you engage in, how hard you push yourself (i.e. within or past your limits), your exposure to things that set off symptoms like heat/dehydration and long periods of standing, etc.Nina Quote Link to comment Share on other sites More sharing options...
smatuszak Posted August 30, 2007 Author Report Share Posted August 30, 2007 Thank you--i really appreciate it. Life has many twists and turns, huh. My thoughts are with all of you.Pacer412 Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted August 30, 2007 Report Share Posted August 30, 2007 Pacer412,I know how you're feeling! I was diagnosed a month or so ago, and I'm still coming to terms with having POTS. I feel scared, because it's impossible to know what the future holds with this disorder. Obviously, however, that's true with everything about life, but I'm just particularly scared about this right now! Please remember, too, that for every person hanging out on these boards, there have to be hundreds who have POTS but it affects them so little, they feel no reason to find support on a board. Or they did at first (because they were scared!) but don't anymore now that they understand their disorder better.You've found a wonderful place to get your questions answered and to get support!Amy Quote Link to comment Share on other sites More sharing options...
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