A percentage of people with chronic and or severe migraines have Hughes Syndrome/APS

I have this, as do my children - Hughes Syndrome/APS - also known as Antisphopholipid Syndrome and Sticky Blood. I also have friends with other types of migraines who certainly do NOT have Hughes Syndrome/APS.

However if you have a history of autoimmune disease in the family, such as RA, Sjogrens, Lupus or Thyroid issues etc and you develop severe migraines or other symptoms, it is very cheap for GP's to test and rule it in or out! It can run in families. It does in mine, my own sister had 7 miscarriages, another unfortunate issue with this disease if not treated, plus also still birth. So in my family including my late father, there are 8 of us! Often the migraine headaches are not relieved with normal pain relief medication and only reduce with anticoagualation or anti platelet therapies such as Aspirin. Women will often have a dire reaction to the contraceptive pill, I know I did before knowing what was wrong with me.

1. Symptoms: hughes-syndrome.org/about-h...

2. Other related conditions: hughes-syndrome.org/about-h...

3. Blood tests: hughes-syndrome.org/about-h...

A new drive for GP's and clinics to pick up this disorder more readily: A recent debate in The House of Lords: publications.parliament.uk/...

and a film:

MaryF

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  • I get my results next week Mary. Will let you know

  • Best of luck. MaryF

  • Hi Mary after you telling me about this some time ago,I asked my GP,as I have suffered terrible migraines all my life,as did my grandmother,mother brother, niece, other family members get them to,although not as bad,I also had trouble conceiving and tried for 13 years before I fell pregnant,although i never had a miscarriage,anyway my GP doesn't think I need tested,he said its more for testing blood clots,what do you think

  • There are many reasons for Migraines, and they do run in families, if however there are autoimmune diseases in your family or thyroid problems or any relatives who have had early heart attacks, strokes or blood clots, then yes it is a good idea to do the three cheap tests. Not everybody has a blood clot, you don't need to have had an episode to pass the tests. If you family history looks viable then a good idea to test. MaryF

  • yes migraines run in the family,I have Hoffmans under active thyroid,my sister had a heart attack at 50,neice had a severe stroke at 29,and heart disease on both sides of my family all being affected in there 50's,and I am to be checked for high cholesterol that runs in the family

  • Then you must insist your GP does the tests or if not them another one:

    hughes-syndrome.org/about-h...

    You can explain that there has been a debate recently in The House of Lords, and the plan is to educate GP's to do more:

    publications.parliament.uk/...

    You could try writing a short and polite email to the GP, (get email address of secretary and mark it for GP's attention, mention the family history and add in the links above, plus: hughes-syndrome.org/self-he...

    Best of luck. When you get them to agree to test you, make sure you take the test forms to the hospital as the samples taken are time sensitive.

    Also take your most trusted friend, relative, colleague, neighbour along, somebody who you trust to be calm and articulate to be your back up patient advocate!

    MaryF

  • ok Mary,I will ask my GP again Thanks

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