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Migraine & APS

Migraine & APS

Was wondering how many of us have been actually tested for APS, antiphospholipid syndrome. .this is common for us Lupies. .and is much more likely to cause migrains and can be very serious.

A MyLupusTeam Member said:

Hi there - I started out with APS positive in 2007 after throwing a pulmonary embolism after appendectomy. I did close to 5 months of labs and worked with several docs as I wanted to know the mystery why I threw a PE at nearly 30. Hence I found out I was APS + but at the time ANA/Lupus negative with no symptoms of Lupus. Fast forward to 2 months ago, I'm now having clear Lupus symptoms and ANA just became positive when we ran the tests 3 weeks ago. I'm also positive for clear Lupus symptoms and + for Chromatin AB.

So to answer your question -- APS is indeed very serious as it is makes your blood more prone to clots. Initially, I was on anticoagulants "blood thinners" for about 18 months. Then hematologist said I could go off, unless pregnant or surgery. I had 1 successful pregnancy taking Lovenox injections the entire time. I had 1 miscarriage. APS is usually suspect in women who have 3+ miscarriages. My husband and I stopped trying as we are in our 40s and also don't want to have another heartbreak.

As far as migraines -- I experienced them several times as a teen. As an adult - maybe once every 1-2 years. It's not recurrent..

Anytime I have surgery, I have to be on Lovenox for 4-6 weeks post op. I am definitely more concerned that perhaps I should be on anticoagulants now that I am both APS and Lupus positive. I see my hematologist in 1 hour to talk about this very subject. I'm very newly diagnosed Lupus but have had years to think about APS and study it.

Other than that, my APS hasn't caused major troubles -- it's scary and yes, risk of heart attack and stroke are there but I have to live life.

Sorry I'm rambling. Let me know if you have any questions. I found my Hematologist to be very helpful in testing and working with APS diagnosis, where as the Rheumatologist was better for Lupus but not as helpful for APS. APS is a cousin to Lupus in my opinion.

-- Alexsis

posted about 6 years ago
A MyLupusTeam Member said:

Every time I see a new Doctor I am told I do not have Lupus but eventually they decide I do have Lupus, for some reason doctors are reluctant to get on the lupus bandwagon.

posted about 6 years ago
A MyLupusTeam Member said:

I have been and I have it and said this was the reason for my miscarriage back in 1976. I did not know it at the time. Make sure your doctors are aware you have this if they do not know and you have been diagnosed by one of your other doctors. It is very important to put on your paperwork. I have had strokes and they put me on Plavix and then when I switched doctors he said you should not be on Plavix because it will not stop them when you have APS. Then I was given Lovenox shots for a month and was switched to warfarin.

posted over 3 years ago
A MyLupusTeam Member said:

In 2 weeks time I will be tested for the second time... First time was positive..

posted over 3 years ago
A MyLupusTeam Member said:

APS is antiphospholipid syndrome, sometimes also called the Hughes Syndrome. You can find info here: http://www.londonlupuscentre.co.uk/

posted over 3 years ago
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