Some people with terrible Migraines t... - National Migraine...

National Migraine Centre

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Some people with terrible Migraines turn out to have Hughes Syndrome, otherwise known as APS.

MaryF profile image
4 Replies

Some useful articles, it took me years to work out what I had!

telegraph.co.uk/health/4400...

pmj.bmj.com/content/79/928/...

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

Mary F x

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MaryF
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Frodo profile image
Frodo

Hi Mary, trying to find out the cause of and therefore treatment for my migraines and other symptoms, and having read these articles, I mentioned APS to my GP who then accused me of making up symptoms/diseases I had read about on the internet. I will have to find another GP as I can't see someone who thinks this about me!

MaryF profile image
MaryF

Do you have any other autoimmune diseases, or any other strange symptoms... as mine turned out to be due to an underlying disease. Mary F

Frodo profile image
Frodo in reply to MaryF

Have had long term chronic symptoms, with acute episodes, worse in last 7 years (almost permanent migraine etc etc). Apparently blood tests are normal, apart from unusually high cholesterol, so GP & neurologist say it's 'just' migraine & suggest medication, but one of symptoms is increasing intolerance of medication, and various foods (and alcohol makes me very ill indeed & has for years - I don't drink, smoke etc). I get frightening side effects from medication and it doesn't work effectively on the pain. Have had some success recently with going gluten free and mostly dairy free and taking Vit D3 and digestive enzymes, including bromelain (natural anti inflammatory). I've been all down the 'stress' route having retrained as a therapist in a field noted for stress/tension relief (included receiving the therapy for many years), moved to a quiet part of the country, meditated, had counselling, tried all the alt. therapies I could (before running out of money) et al. Haven't seen a nutritionist though.

So yes, I think there is an underlying condition, worse with menopause. It all started following a head injury, which may be a coincidence. Migraines currently down to once a week, but don't know when they will strike or how severe/long lasting they will be.

Sorry for such a long reponse! And many thanks for your time and help - it makes a difference.

MaryF profile image
MaryF in reply to Frodo

I sent you a couple of book titles by private message: If you can't find them, let me know. My best friend had migraines which laid her out for up to four days, twice a month...she takes B12 and magnesium and has had a real difference and is also gluten free. However my severe migraines turned out to be Hughes Syndrome which has a wide range of symptoms, including family history of miscarriages. Best of of luck to you. Mary F x

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