Is any body has headches b/c of hughes disease or lupus, have a stroke in Feb 2007. My inr regular is 3.1 -3.4. Thks.

[msperling]

Have headaches every day my GP and blood spec and nero spec, have no idea of cause.

[MaryF Administrator]

Hi there and welcome, have you been given a diagnosis of Hughes or Lupus? Both can give you unremitting headaches. In Hughes Patients INR often set higher. The first thing, is where are you located, as our charity has a list of UK specialists that your GP can refer you to, or privately if you wish to self refer. If not in the UK we do know a few names in other countries, which is aided by other members. Also not a bad idea to email the charity website to your doctor's secretary: hughes-syndrome.org/

Also within the charity website a list of tests that can be conducted, although some people are sero negative and don't pass a test but nevertheless still have Hughes Syndrome.

Let us know how we can help further. Mary F x

[msperling in reply to MaryF]

Thanks for your response, i have diagnosis with Huges and somewhat with lupus, they think the lupus cause my stroke and 2 yrs ago had Gran mall seizere, i am not med for that i am on kepra. Also i am living alberta canada.

[MaryF Administrator in reply to msperling]

Well it is great that you have a diagnosis... it really is, some people have a real struggle to get a diagnosis. Some patients as well as their anticoagulation for their Hughes Syndrome, also do well on a medication called Plaquenil added along side which is useful with Lupus and allso Sjogrens which often rears its head with Hughes and Lupus. However it takes many weeks and months to work, many do well on it. Here is a list.. showing some help in Canada: (Bottom left), you or your doctor could contact them to find out further advice. Hughes patients do at times have a higher INR setting. So alongside forwarding the charity website to your medical doctor, here also is the list with a name in Canada.. they may know more for you:

apsaction.org/

Mary F x

[msperling in reply to MaryF]

Thanks alot i am also on plaquenil (200mg once a day) so you says people with my disease causes h/d all the time, also i exercise alot and run alot, i ran half marathon twice after my stroke and my disease, i am very thankful for this. Not one my g.p and my spec says anything h/d they says it could be my scar tissue after my stroke, i am on warfarin since 2007.

[KathrynKathyKate]

I have APS and have daily headaches. Diagnosed with Chronic Migraine. I tried propranolol for awhile with no real difference. I was put on topamax a year ago and have had nothing but problems with it. First round seemed to control migraines but gave me nasty squeezing headaches. My eyes were sensitive to it and pressure rose in both eyes but higher in right eye. I stopped then started again. I stayed on a low dose for awhile but finally gave up on it a few weeks ago. It's not worth damaging my eyesight over. I just had Botox for migraines and that isn't working either. Seems like I just have to suffer forever.

[sarahlou1801]

Hi I have APS and also suffer with daily migraine waiting to see a neurologist at the mo x

[Manofmendip in reply to sarahlou1801]

Hi Sarahlou

What medication are you on for APS? I was on Warfarin for 10 years and that stopped my migraines for 7 years and then they came back. I was then put on Amitriptyline and have not had a migraine since. I am now off Warfarin and on Fragmin instead but I have not been brave enough to stop the Amitriptyline to see if the migraines come back.

Best wishes.

Dave x

[beautymonster85]

Most definitely! That is part of your new disease, APS.

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[MaryF Administrator in reply to beautymonster85]

Hi I have never heard of the organization mentioned above, but we do tend to recommend this one, having widely heard of it: americanaps.org/ Mary F