Thrombocytopenic Purpura Support Group

TTP is a rare disorder of the blood coagulation system.Thrombocytopenic purpura are purpura associated with a reduction in circulating blood platelets which can result from a variety of causes. There are two known types: Idiopathic thrombocytopenic purpura (ITP) and Thrombotic thrombocytopenic purpura (TTP or Moschcowitz disease). Give advice, share your story, and find...

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DeviousIntent 12/05/2008

I have known my diagnosis for 5weeks now.. been getting headaches since like a week b4 I went to the emergency- had all the ttp symptoms that week. anyway.. these headaches aren't letting up- I'm getting pain meds, but the point is they are staying pretty consistant like the pain levels at their best and their wost seem to be the same now as 5-6 weeks ago..Dr says its ttp. wondering if they'll ever let up i'm fine- plasma most likely will stop next week, steriods stopped last week. In remission 3weeks. Feel good; platelets are over 300,000...My point- Does anyone here with TTP get headaches?

deleted_user 12/15/2008

I still struggle with headaches. My TTP has been in remission...about 4 years now. They were HORRIBLE when I was on the plasma pheresis treatments, especially when they'd try to take me off the treatments. Hang in there, it doesn't fix it self per se, but it gets better.

DeviousIntent 12/26/2008

thanks seabee for your comment.. so u still get headaches? my doctor told me they are do to the plasmapheresis, yea they areen't as bad as when I was on the treatments, guess it is another thing to deal with huh? lol beth

deleted_user 12/30/2008

I deal with so much physical crap now its not even funny. There was so much goin on with my body then I couldn't tell you what caused each issue I have now, but I do have noticeably worse headaches since I've had treatments and since then than I ever did before. I don't really remember having headaches before being sick......

deleted_user 03/18/2009

Hi,
I have ttp was diagnosed in 2005 after a serve stroke uclh(university college London hospital) in London uk are doing some resherch into headaches etc after ttp, but i think its mainly for patients who have had strokes, i am taking part and have had blood tests and done a pc test am going sat for mri scan and heart scan, hopefully me taking part will help others.

deleted_user 03/24/2009

Hello,
YES YES I have headaches now! the MRI showed nothing --- I never had headaches before the TTP! I am glad to hear that I am not the only one --sometimes the headaches are so bad I could go run and hide! Hopefully with time they will stop or slow down! I am thinking positive and sending everyone good thoughts of headache free days! In the spirit, Judy

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