Good morning I have APS since 2007, I... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Good morning I have APS since 2007, I had two stokes. I also have lupus. I think my Lupus cause my stroke, Is normal have headaches a lot.

sperling profile image
8 Replies

Headaches!!

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sperling
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MaryF profile image
MaryFAdministrator

Hi and welcome, yes it is normal to have headaches, however it will also depend on your medication and if you are on Warfarin your INR target range. Where are you located and who is managing your medical care? It is important to have a medical consultant who fully understands Hughes Syndrome/APS, which also helps your GP. We normally as our members to also check their levels of Vit D, Ferritin, folate, B12 and their Thyroid function. MaryF

sperling profile image
sperling in reply to MaryF

My INR level is usually 3.2 to 3.3, I am from Canada. My GP is monitor my Warfarin I take. I see a blood specialist also every 6 months to year.

Thanks

lupus-support1 profile image
lupus-support1Administrator in reply to sperling

Are you referring to the Lupus Anti-coagulant test? The name is very confusing because this is NOT a test for SLE/lupus, but a complicated clotting test.

About 25% of patients with SLE, ALSO have APS. Both are autoimmune. It is common for people to have more than one autoimmune condition.

Be well!

Ros

MaryF profile image
MaryFAdministrator in reply to sperling

Great, I enclose here our charity website, at the moment we have two specialists in Canada! ghic.world/ MaryF

Sara_A profile image
Sara_A

Oh yes!!! I have headaches a lot!!

I get a few different types of headaches, just recently seen another neurologist and started on topiramate (an anti epileptic drug) and touch wood I’ve not had a headache for about 10 days which is a miracle! I would usually have had a few daily ones and at least one severe one by now.

Fingers crossed this continues to keep them at bay🤞!

But headaches can be due to the aps or the lupus as far as I know. Mine were initially better when I was started on aspirin and I’m now on clopidogrel

I’m also on beta blockers for them

Hope u get sorted out soon

Lure2 profile image
Lure2 in reply to Sara_A

Hi Sara,

I know you have both Lupus and APS and you are seeing a Neurologist. Have you seen a Specialist of autoimmun illnesses like a Rheumatolog or a Hematolog?

You take betablockers for the migraine. Do you also have high bloodpressure? Have you ever been on any anticoagulation drugs to thin your blood?

Sara_A profile image
Sara_A in reply to Lure2

Hi, yes I am under a rheumatologist who suggested to the neuro that maybe I should trial heparin for the headaches but she said not and to try topiramate or some others first.

I don’t have high blood pressure, it seems that’s one of the only things that I don’t have!! I’m only on bb for migraines x

Wittycjt profile image
Wittycjt

Ive had several strokes, several in a row. Fortunately, knock on wood, i have not had headaches since my last stroke.

I am also on lovenox every twelve hours. It is dosed to my weight- so i am properly anticoagulated.

Yes, i also have APS.

The only time i have gotten a headache is if i sleep wrong... and due to my strokes it is difficult to get comfortable: I cant adjust my body as i would like to be able to, lay upon my side, or did not fix pillow right, turn over... you get my jist. Maybe the doc needs to re evaluate your coagulation and increase your INR. Best wishes and warm hugs, Cindy

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