Migraines: I have the most horrendous... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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I have the most horrendous migraine headaches virtually every day, its just the intensity that varies, and "one" can last for up to 5 days with no reprieve at all. If I wake up with a headache, I know its going to be a day from hell. Usually pain starts about late morning. early afternoon and last till I eventually fall into an exhausted sleep - or longer. If you suffer from these debilitating headaches, how do you cope - or what do you take?

Many thanks!

16 Replies


Well, Warfarin stopped mine for 7 years but then they came back and it was sugested that I try Amitriptyline as well and this has stopped them completely for over 3 years now.

Best wishes.


Hidden in reply to Manofmendip

Hi Dave

Thanks so much. I have been on Tripyline and warfarin (15mg daily) for 15 years - alas it has not helped at all. Time for the big guns!!

So happy that you have found relief.

Keep well


My wife has a blood disorder which causes bad headaches at times I think because her hematicrit gets too high. When I take her to urgent care, from time to time, the best thing so far has been a shot of Toradol AKA (Ketorolac Tromethamine). This medicine is not to be taken lightly and so you need to have your doctor fully aware of any issues may have taking it. It is not a long term drug to take, but maybe it will help against the "worst" of the bad headaches. It is also available in pill form in the US. Best wishes. d

svanhecke in reply to Hidden

Thanks for writing, I too suffer from horrible headaches as well as your wife. What kind of blood disorder does your wife have?

I normally take an anti-seizure med daily (Zonisamide 200mg). To treat the breakthrough migraines I take Excedrin Migraine and/or Toradol.


Thanks so much! I also take antiseizure meds (Epitec 200mg) - I will try toradol! Keep well


Thank you so much - I will give it a bash!

Take care

I am also using Topiramate after using all the other things. Helps a lot. My doctor said it is used off label as a weight loss drug.

Hidden in reply to Lari

Hi Lari

Thanks very much for the advice. I take Topamax which I think is probably the same thing! Will keep the faith!

Best Wishes


HI, I think as per above and the answers it is a bit of a trial and error situation with your medical professional, until they find something which works for you! They must help you and keep trying until these migraines become more manageable. Just chip away at them, and they will provide more help. Mary F x

Hidden in reply to MaryF

Hi Mary

Thank you so much! My Rheumatolagist never gives up thankfully, but 15yrs after diagnosis and more meds than I can remember, I think its my lot! I saw my Doc yesterday and he has put me back onto beta blockers. I will NOT give up! Thank you so much for the support.

Take care

I had non stop migraines for 2 years--had to take 2 preventives plus scheduled compazine and ibuprofen. After finding out I had APS, I started on a therapeutic trial of heparin and my migraines completely resolved within 24 hours and I was able to get off all the other drugs. Things later worsened for me and I had to add plavix. I almost never have migraine on this combination.

svanhecke in reply to Salty

Sally, your story is simply amazing!!! It really gives me hope! I suffer from daily horrible migraines. I am hoping and praying for relief!


Thank you Sally. I have been put on all those drugs and more, but unfortunately I have very little improvement :-( I do have pain meds that do work some of the time. I've been told that the blood vessels in my brain have narrowed so that is the crux of the matter.

So happy you have some relief

Take care

My 20 year old daughter suffers severe migraines shes in pain the now crying been to 3 different doctors none of her medication works I've gave her amatryptalin to make her sleep she also suffers from really bad cramps with her periods

Lure2 in reply to sharrelle

Hi Sharrelle,

Does your daughter have APS (Hughes Syndrome)?

If not I hope you follow her to a Doctor. Otherwise write your own question on this site and you will have several answers how to help her with her symptoms and see an APS-Specialist. Also tell us where you live.

You have answered a 2 year old question now.

Best wishes that she will soon be better from Kerstin in Stockholm

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