Sticky Blood-Hughes Syndrome Support
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I will be making an appointment with my heme/oncologist for APS testing. I have already tEstee positive for Lupus Anticoagulant so even though I'm on warfarin, I know I have that. Before I started on warfarin, I was a terrible migraine sufferer. 3 to 4 per week that caused vomiting and extreme sensitivity to smells and lights. I was the one person in the office that had to request that others not use perfume or scented lotions (everyone just loves that gal, LOL). Anyway it was never a question if I had a headache; it was how bad was my headache. From the day I was diagnosed with Factor 5 Lieden thrombophelia and placed on warfarin it was like a miracle cure for my headaches. Even now I can tell when my levels are low because I will get a slight headache. It's amazing, I can eat dark chocolate and I can once again wear fragraces and even have MSG without fear of a headache. Am I correct that migraine is one of the symptoms of APS? The more I read this site, the more I'm convinced I have. I also have Lupus SLE. I appreciate how generous you all are with your knowledge and willingness to help. You have given me the tests to ask for but they wouldn't do them while I was in the hospital. The said to go back to my hemotologist for the tests.. I was also wondering if you have any information on an APS specialist in the Orange County area of Southern California. Another question I have is that I have been having a heck of a time staying out of the hospital due to pulmonary edema and congestive heart failure. Would that be more a Lupus thing or is that also common with APS?. I know, so many questions; I just want to get to the bottom of all my health issues. Thank you in advance for your kind responses.

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The neurological symptoms incl migraines are typically for APS. Also sometimes lung- and heart-failure and also together with that high bloodpressure whick has to be lowered.

Warfarin also helped my neurological symptoms but I have primary APS (no other autoimmun disorders as far as we know today). I have Lupus Anticoagulant and the two other antibodies since 14 years back.

An APS-Specialist you should have! Can be difficult in the USA I have learnt from our members in the US, but please try for your own sake.

I think you should read "Sticky Blood Explained" by Kay Thackray. She has APS and those symptoms you also have. Many menbers have the book here and it is a good book to understand APS and informative also for relatives to understand how it is to live with this rare illness that so very few Doctors understand and know about.

I have Pulmonary Hypertension and leaking heart-valves and I have had micro-embolies and before Warfarin very high bloodpressure. Important to get it down as it is a sign of APS.

I wish you Good Luck to find a Specialist. In the meantime read as much as you can because knowledge is power with this sticky blood-syndrome!

Best wishes from Kerstin in Stockholm


Hi, do get your consultant to run some tests for Lupus, they will do them I am sure, I enclose this for your information. and this, MaryF


Thank you Mary


My Lupus SLE is confirmedas well as the Lupus anticoagulant since 2010. I joined the Lupus site here but kept getting bumped into your group where I just found that I have a lot of the symptoms. My GP is familiar with APS and also agrees it's with a look since I have so many similarities. I just want to get to the bottom of it all. I'm starting with here new specialists; a rheumatologist a pulmonologist and a cardiologist. For the last 7 years I have suffered from such depression and anxiety that I was basically agoraphobic. I have a GP that comes to my home as well as skilled nursing. I am feeling much better and am able to run small errands, howeverdue to my stroke in 2010 I can no longer drive so I depend on my ex husband to cart me around .we have an adult disabled daughter and we have been able to be roommates the last several years so we can both parent our daughter. We are much better friends than we ever were as spouses and things have worked out nicely. He helps me tremendously with my health issues and we all feel very blessed with our arrangement.


Yes, my migraines stopped when I was put on Warfarin. They did come back seven years later but that was at a stressful time in my life and they have returned again at other times of extreme stress.


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