Does anyone have migraines with their... - Hughes Syndrome A...
Does anyone have migraines with their APS? I'd like to know how you deal with them. Thanks, Monica
Hi there, yes they are a common feature.. some people can almost lose them by having the correct level of INR.. anti coagulation treatment.. others like me get by on aspirin, which has really made a difference, not stopped them but really cut them down and some of the intensity, but many have a host of different medications.. some times it is trial and error with their medical team until something is found to be useful to keep things as normal as possible. I am sure you will have many more answers. However it is important that you seek medical advice and get them managed. Mary F x
Thank you MaryF. I guess my problem is that I have been on warfarin for 5 years, and with my INR in the zone, I still get them. Before going on warfarin, I used to use Excedrin Migraine, and that would take care of it. The only thing that helps right now is Cafergot, but end up taking it 3 to 4 times a week. I'm just taking one day at a time. Monica
Hi there.
I had bad migraines before I was diagnosed with APS and they stipped completely for 7 years, when I started on Warfarin. Then they returned at th end of 2009. My neurologist put me on a low dose of Amitriptyline 20mg per day and this has stopped them for 3 years now.
I have moved over from Warfarin to heparin, so I'm tempted to try stopping the Amitriptyline to see what happens but haven't plucked up courage yet.
Best wishes.
Dave
I've thought of going over to heparin. Need to talk to the doctor. I think I'll try this first and then if it doesn't work, I'll ask the doctor about Amitriptyline.
Thanks to all of you all for giving me great advice and insight. Sure appreciate it.
Monilady
I was prescribed an aspirin based medicine but it makes me too sleepy so I can't tell if it works or not. I am hoping that proper coagulation therapy will reduce my migraines.
Monilady--what do you mean by your INR is in the zone? If you look under "polls" on this website you will find a poll with which INR range best improves your symptoms and you will see that many APS patients need a higher INR than is prescribed for most other conditions and many MDs don't know this. Also, some of us do better with LMW heparin than warfarin and some need to add an anti-platelet agent like aspirin for optimal migraine and/or other symptom control. Most people are able to improve or even abort their symptoms with the proper regimen.
I was prescribed a low molecular heparin injection by Prof Hughes for my headaches. To be fair, not always migraines but nasty hesdachees several times a week. The heparin works really well for me.
Thanks. Someone else mentioned heparin and I will call my doctor about that.
Sure appreciate all the replies I'm getting. I just registered on this community, and already I feel like I have a place to open up and find out how other APSers are dealing with their disease.
Monilady
I have suffered from migraines for 30 years. I started on imitrex shots in my 20's then to the nasal spray and then the pills. All the while I took excedrin too because the caffeine took care of my chronic everyday headaches. I developed thrombocytopenia and thought I caused It by taking so much aspirin so I switched to aspirin free excedrin. Little did I know it was the APS that was the cause. The hemotologist and rheumatologist couldn't even figure it out. APS wasn't known yet. Years ago I switched to Relpax because the imitrex wasn't working as well and I also tried Treximet. I was put on Inderal to try to prevent them but still got them and still had daily headaches. Finally saw neurologist that said my body was addicted to the excedrin and that my headaches would never go away until I stopped taking it. My body could no longer deal with pain on its own. My brain knew the aspirin was coming. I've been on Topamax since the fall and have not had a full blown migraine yet. It's not perfect, I still have a lot of headaches but I have days, sometimes in a row, of no pain at all. I still take excedrin more often than I would like but it's better than it was. Warfarin did not do anything to help even though hemotologist said it would. I also read that a higher INR was needed for migraine sufferers but my general doctor didn't seem to agree.
Thanks. I've had the migraines all my life. I'm 68. Sometimes more migraines than at other times. This is one of those times that I'm getting 3 or 4 a week. I tried Topamax for a year, saw little difference, but the side effects finally got to me. I've also tried Gabapentin and nadalol as preventatives but no relief. The only thing that works for me is Cafergot, to get rid of them.
Thanks for all of you being out there, where ever you all might live. I'm still in awe of the 'world-wide-web' where we can get together for support like this, to help make our lives better.
Monilady
Hi monilady, i'm62 years young, I had migraines since teenage years,got worse a year ago, 2or 3 per week. My consultant decided to order a. Spect. Scan which revealed cerebral vasculitis. She decided to put me on Aspirin 300mg daily and my migraines disappeared almost straight away hope that's. Of some help,take care.
After I started warfarin, after I was diagnosed, I would still get the occasional migraine. I kept charts and found I did have triggers-- for me, bright light. I sought to avoid the triggers and after a year or so the migraines went away completely.
My ( probably poor) understanding is that in some people the brain will "learn" when it's time for the migraine-inducing circulation changes and that you must "unlearn" this relationship.
Don't know if this post has any relavance to your situation, but I thought I'd share.
Good luck.
I really do stay away from my triggers. Especially the nitrites and nitrates in preserved meats, and msg, and there are even certain food colorings that trigger me. I would really like to retrain my brain, but don't know how. I'm so glad you've found a way of dealing with yours.
Thanks for the information
Monilady
Hi Monylady,
I am also 68, 69 in June.
I only had Auras. First it helped with 75 mg Aspirin. Then after ministrokes I tried Warfarin and after that my symptoms has improved. Practically disappeared.That was 2 years ago.
I have read what the others have written the last year. I fully agree with what Salty says.
And also an INR of 2,5 is very seldom enought for us. Take care. Kerstin
Hi, that's cool that someone is as old as I am. lol. I thought I had replied to Salty, but I must have hit 'cancel' instead of reply. I'm new to all of this, but I will get the hang of it.
My hematologist has me on a range of 3.0 to 4.0. What do you have as a range. I'm just curious.
Thanks for your insight into my question.
Monilady
Hi Monilady. I use heparin not warfarin. It works better for me. You have a high target INR with incomplete relief of your symptoms. Hopefully your doctor will consider a trial of heparin or addition of aspirin!
Monica, yes you have to inject it just under the skin. Most people can learn to do this easily. Same as insulin for diabetics. One of the great things about the heparin is you do not need to monitor any levels. The dose is based on your weight. There are diifferent heparin products and different indications. Your doctor should know I started out with a once daily dose but later found twice daily dosage was more effective. I use lovenox which does not have a very long half life so my need for twice daily dosage makes sense. I hope if you try it the heparin will help you as much as it has me 
Well, I'll see what she says. I've used Lovenox whenever I've needed surgery. The big question I have is having thin enough blood to keep me from having a stroke again, even though it's based on my weight. Anyway, I have something to talk to make doctor about. Thanks
Monilady
I used to have migraines every week but now I control in with what I eat but I would be in bed all day and would miss school and work now I get about one a month. Xxx
I found certain things triggered visual migraines.
Bright light on a darker background like sunlight though a small window.
Looking at a computer screen with a window behind.
Spring onions, chocolate, getting hot especially with the sun shining.
Caffeine. Also after a burst of activity like getting ready to go out.
This was also a trigger for my AF.
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