Chronic Daily Migraine

[AliceA28]

Hi, wondering if anyone else has a similar story to this.... Or suggestions. I have had migraine every day for the last 11 years. I have had all kinds of scans and tests and we are still no nearer to knowing the cause. I have tried almost all the recommended treatments and different medications, I have lost jobs thanks to the amount of time I have had to have off due to sickness. I feel totally depressed and alone in this and would love to hear from people who are in a similar position to see what has worked or any causes. Thanks

[MaryF]

Hi, mine and my children's migraines like this, turned out to be Hughes Syndrome/APS (sticky blood), easy to rule out with simple blood tests, often other family members in the wider family have autoimmune diseases or history of miscarriages etc etc. MaryF

[Hidden]

My daughter suffers almost daily and I used to until a pain specialist realised that they were caused by slipped discs in my neck! I have had six monthly nerve blocks for almost three years and (touch wood) just one migraine, and even that wasn't as bad as they were before.

However, my other daughter also has Hughes Syndrome like MaryF's daughter. So it's worth insisting on further tests.

[babs1234]

I have spoken to Mary F on a couple of occasion regarding Hughes Syndrome. My doctor hadn't heard of it but when I looked it up it says it is treated with blood thinning agents. I have been taking a 75 mg aspirin a day although due to having had a gastric ulcer was advised against this by my doctor. So far I haven't had a migraine but it is early days. I was due to have my few days pain free about now anyway. I will certainly let you know if it continues or not. It's certainly worth a try though. My heart goes out to you.

[MaryF in reply to babs1234]

There are alternatives to Aspirin, Plavix should you be unable to tolerate Aspirin, which I always take on a full stomach. Aspirin does not thin blood, it is an anti platelet therapy, ie it makes the platelets slippery so less likely to clump and form clots. MaryF

[babs1234 in reply to MaryF]

Thanks so much for your help Mary I'm away at the moment but as soon as I get back will be going to my docs with all this info ans demand to see a specialist. Do you think the blood tests will still show the syndrome if I'm taking aspirin?

[MaryF in reply to babs1234]

Aspirin will not affect the test results, however do the tests I sent you, at the hospital, as you do not want the samples lying around and insist on a referral to one of the recommended specialists it is vital you get help, and also continue to check your Thyroid. MaryF

[MaryF in reply to babs1234]

Hi here you go: hughes-syndrome.org/self-he...

MaryF

[babs1234 in reply to MaryF]

Thanks Mary. Got my referral yesterday. Will keep you updated x

[AliceA28]

Thanks for all the replies everyone. I will discuss with my doctor testing for this and see where that gets us.

[MaryF in reply to AliceA28]

Here are the symptoms: hughes-syndrome.org/about-h...

and here are the blood tests, please take the forms to the hospital, as the samples are a bit time sensitive, if left lying around for collection at GP surgery: hughes-syndrome.org/about-h...

Your GP may know the disease as APS Antiphospholipid Syndrome or Sticky Blood. MaryF

[babs1234 in reply to MaryF]

Hi Mary. I have a doctors appointment this morning but can't find the list of specialists.. Do you have any idea where I saw them.? Thanks

[Hidden]

Me and my daughter get migraine my daughter get them everyday. She is part of the migraineur misfits page on Facebook and it's very helpful page they are very supportive group hope that can help you.

[BarrySB]

Hi Alice. I too have suffered from chronic migraines for the past 7 years, nearly every day ( and night). so you are not alone.

My migraines are somewhat odd, as I do not normally have a noticeable headache, just a very intense and uncomfortable thick head, with nausea, vomiting and all the trimmings. They normally last for about an hour, after which the aura starts to appear and I consider this to be the beginning of the end, as my aura's normally pass through in 20-30 minutes, after which, I am back to normal again. On a good day, I will get just one of these attacks, but on a bad day, four or five.

I have tried very hard to identify triggers, but with limited success, although most processed food, table salt, some brands of bread and earl grey tea will often trigger a migraine within a few minutes in my case.

Although we all appear to have different triggers, do try cutting table salt out completely - buy any of the many natural sea salts instead - even boiling vegetables in table salt would trigger an event with me, so I now use pink himalayan salt for everything, and although I still have at least one migraine a day, it is definitely better than was a few years ago.

I wish you well and hope that things improve for you. I do know exactly how you feel.