wibbleway Posted January 2, 2009 Report Share Posted January 2, 2009 Hello Everyone,It has been about 8 months since I posted and feel bad for not keeping in touch. After going through more tests, the doctors have found that my POTS is part of an overactive autoimmune system. You might call it an autoimmune disease but there is no typical name for it (of course). This is causing my body to throw out a lot of antibodies that are attacking my body. They are trying me on Cellcept which is a drug for organ rejection to see if it will slow down my body from creating so many antibodies but they don't feel it will do any good for the POTS. The main thing that got me was the fact that they took me off of my low doze Atenolol (to see about the Cellcept) that made my blood pressure and pulse rate so high that I was having horrible headaches. My heart doctor just two weeks ago put me back on the 25mg of Atenolol but now this week I've noticed that my blood pressure is running 91/66 and my pulse 109 and that is sitting. I can't even get a reading when standing. What I wanted to ask you all is this, I've had a cold this week bad and overdid things with family last week during Christmas, so is my POTS just acting worse now because of the cold and tiredness? All I've been able to do the last 3 days is lay down in the bed. It is funny how you forget as the years go by but I do believe that when we overdo or are sick that it can take a week or two to get back to where you are. One thing for sure is that I am not going to let new doctors mess with my medication anymore. PLEASE let me know what you think. One of the hardest things about this disease is learning to live with it. Happy New Year and thank you! Quote Link to comment Share on other sites More sharing options...
EarthMother Posted January 2, 2009 Report Share Posted January 2, 2009 So sorry you are having a rough go. I do think you are right in that sometimes we just need to gather back up our reserves after we have been depleted for one reason or another.I am interested in the auto-immune diagnosis ... do you know what anti-bodies they tested for to arrive at the conclusion?Hope you feel better soon.~EM Quote Link to comment Share on other sites More sharing options...
dsdmom Posted January 2, 2009 Report Share Posted January 2, 2009 I'm curious too - was it just the AChR antibodies or were there others they were able to identify? Quote Link to comment Share on other sites More sharing options...
iheartcats Posted January 3, 2009 Report Share Posted January 3, 2009 When I am sick, my POTS goes crazy. I have worse symptoms even if I am fighting a minor virus. With a severe flu (which I had last year) my heart rate was off the wall, could be 120+ sitting.Drink lots of fluid and salt, if that works for you. It helped me get through the worst of it. Quote Link to comment Share on other sites More sharing options...
flop Posted January 3, 2009 Report Share Posted January 3, 2009 Both the cold and the extra activity can cause POTS to play up so both together is probably making you feel rotten right now. I agree with the others - fluids, salt and plenty of rest.Hope you're feeling better soon!Flop Quote Link to comment Share on other sites More sharing options...
Rachel Posted January 6, 2009 Report Share Posted January 6, 2009 When I over-do it, my symptoms definitely get worse. Sometimes colds make me feel more tired, but not usually. Doing more than I should physically is usually what makes me crash.I hope you'll be back to baseline soon. Rachel Quote Link to comment Share on other sites More sharing options...
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