Suffering Headaches

[sperling]

Hi, I am asked a question again about my headaches. I have Hughes Disease and minor or remission Lupus. I have a lot of headaches, Usually my INR is 2.5- 3.0 on regular basis. Is normal to headaches with my disease? Thanks

[HollyHeski Administrator]

Hi, I've looked at your last posts and see that headaches are a real issue for you.

Yes normally we associate headaches with our blood being to thick and sticky but feel for you, this issue has gone on too long and now you really need medical advice from an APS/Hughes?

[sperling in reply to HollyHeski]

Thanks for your reply.

[MaryF Administrator]

HI, it is important that you have the right consultant and input from your GP, our sticky blood if left too thick can make migraines worse and more frequent. Also it is important to rule out other issues like low B12, low D or poor Thyroid function, to make sure nothing else is adding to your headaches. MaryF

[Lure2]

I read from previous question that you have got 2 strokes and may have Lupus.

I do think you should talk with the Specialist who diagnosed you and who put you on Warfarin as the INR is most probably quite too low.

Perhaps you do not have Lupus at all but "Lupus Anticoagulant" positive which is one of the three antibodies they test for APS.

Of course I can not say that you do not have Lupus but it is sometimes a misunderstanding between Lupus (the illness) and LA (the antibody the test for APS).

That you may see on the bloodtests they took to diagnose you.

I am on Warfarin and have had a lot of neurological symptoms but I need an INR of 4.0 not to get my symptoms back. Read also "Sticky Blood Explained" by Kay Thackray.

So get a Specialist of autoimmun illnesses and I wish you Good Luck with your headaches.

[lupus-support1 Administrator]

Just to clarify, do you have Systemic Lupus Erythematosus & APS/Hughes? Or do you have a positive Lupus Anticoagulant?

Patients and doctors are confused with the name Lupus Anticoagulant because it is NOT a test for SLE/Lupus but a complex blood clotting test.

IMHO, you need a specialist in APS/Hughes and you need to see the specialist. You should not be suffering with continual headaches. You have had 2 strokes and therefore you need to see your specialist in APS/Hughes as soon as possible.

With good wishes,

Ros