24 Years Later!

[westfit1]

February 29, 1996! I was 39yrs old! Fitness was my passion and I had my 1st stroke that day! No sign of clots at that time! The Clots "showed up" after my release from the Hospital 2 weeks later. I developed Clots in my Head, Right Thigh and Right Ankle! It was called Antiphospholipid Antibody Syndrome! This has been a wild ride over the years. My treatment included several years of Chemo to suppress my Antibodies! My Biggest Problem today is the Headaches that I suffer Everyday, caused by the clots in '96! I'm still alive, THANK GOD!

[MaryF Administrator]

Hi and welcome, let us know where you are in the USA, as many on this forum are from the states and have good knowledge, local knowledge as to who is a good Hughes Syndrome/APS specialist. Migraines can be for many reasons as well as this particular disease, especially if your blood is not adequately thinned, also things like low Iron, low B12, low D and poor Thyroid function, (common with this disease), can all add up to helping headaches become more frequent. MaryF

[westfit1 in reply to MaryF]

Charlotte, NC

I'm being treated by a Headache Specialist! Suggestions will be appreciated! Thanks!

[MaryF Administrator in reply to westfit1]

I think KellyInTexas may have some ideas, or others in your area, who are also on this forum, I am sure you will get some suggestions soon. MaryF

[KellyInTexas Administrator in reply to MaryF]

Thomas Ortel leads the hemostasis and thrombosis team at Chapel Hill, University of North Carolina-

And he is an APS specialist!

[Mermaidatheart]

westfit1, Yeah for your positive attitude!! Good or bad I love every day that I am looking at "the green side of the grass"!!!

[Stereolover]

My partner’s sister is a fitness instructor and she also suffered a stroke approximately 8 years ago. It took time for her to recover but fingers crossed she’s fine now and although at the moment she can’t take a class she’s never had any DVT’s. For your headaches try to incline your bed by 6” at the head end. Use bricks, wood, books or anything sturdy. I bought bed risers from Amazon. There’s a fantastic group on Facebook called Inclined Bed Therapy. Listen to the interviews and read testimonies plus feel free to ask any questions you may have. Everybody is so friendly and helpful.

[KellyInTexas Administrator]

West fit-

You happen to have an excellent APS specialist hematologist/ physician who leads a team in Capel Hill at the UNC.

Please contact them if you need further assistance.

I do feel confident that any one of your North Carolina doctors working with you know this, and have likely already referred you there.