Hello everyone, I have had a major stroke 6 yrs ago and was diagnosed with APS back then, I am having trouble coping with migraines, my INR is at 2 at my last test,I live in a rather small and isolated country town in Australia and my GP is not very familiar with Hughes Syndrome I have heard if my INR reaches 3.5 my migraines will improve or even disappear is this true,I hope everyone is having a good day.
Kris
Hi there, I am not an INR expert on this site. as I only take aspirin twice a day, however my migraines are very much better since starting on this twice a day... and reading on here, when people do raise their INR to the 3 - 3.5 range there does seem to be significant improvement. Please feel free to use some of the papers on The Hughes Syndrome Foundation for your GP ad we also have Dr Tim Godfrey out in Australia, his whereabouts can be found via Kate Hindle HSF on here, or indeed 'Wayne' on here from Australia. It sounds as if your GP is well on the way with this, and you just need some fine tuning. Wishing you well. Mary F x
G'day Kris
I havent suffered with migraines but do hold an INR range of 3 - 4 I do cope better with this range. When my INR sustains 2.5 - 3.0 for a bit fatigue kicks in.
If you have a good rapport with your GP suggest a trial with a higher INR and observe the results. If things improve maintain the higher INR.
I live near Windsor NSW. Where abouts in Australia are you?
Hi Lucky1
I live in Coonabarabran NSW in between Dubbo and Tamworth in the Central West Unfortunately I do not have a good rapport with my GP in relation to APS He is happy if my INR is above 2. I am tested monthly and am currently on 7mg of warfarin a day. I was 2.8 but am all over the place due to other medication changes apparently? I printed information from the hughes website for my GP he refused to look at them, MY Neurologist is far more approachable but expensive and 2.5 hrs drive away and I have 2 book a few months in advance for an appointment.
kris
Is there only 1 GP in town? maybe it is time to try another if possible
There is one other I have tried also, it is difficult in regional areas, and I think part of the issue with my current GP is he knows i went to the other GP- clicky country towns(they get upset).Then you are treated differently, shouldn't matter but it does. Am trying an holistic approach to use meditation and Yoga and hopefully this will help with the migraines, unfortuneately I know i have to remain with conventional medicine for APS but i am going to research the holistic approach and try it- can't hurt
My migraines improved once my INR was put at 3-4 target 3.5.
Can still get occassionally but not as severe.
HI there... I've always suffered with migraines and mines do improve when I reach an INR of 3-4 (my doctors now established this as my target) and as long as i take baby aspirin and warfarin correctly, the migraines stay away from me. Also, i have a restriction to diets. Things that i used to eat without problems, now give severe headaches. Hope you get better. Greetings from Brazil.
I also needed an INR 3's and also take plavix (aspirin has no effect for me) to relieve my migraines, trouble thinking, stuttering. My INR was very erratic as you describe and I switched back to using lovenox twice daily as it felt safer and is more effective for me since the dose is always correct (dose is based on weight not INR).
Hi, I had three bloodclots on the brain two years ago, and until that time I had regular migraines. Since I've been on warfarin I havnt had any migraines at all, but still suffer regular headaches. I've recently had my INR range changed from 2-3, to around 3. I already am having less headaches, but also am having more Amitriptyline to help with the pain too. I definatlely think that changing the INR does help.
I hope you get a better management of your migraines soon. Big hugs Sally x
Hi Kris
I suffered with bad migraines and also hemiplegic migraines have had 2 strokes. My INR was originally between 2 - 3. They increased my INR to 3 -4. And this has helped my headaches etc I now. Don't get them as bad as I used to.
Good luck.
Donna
Headaches daily have been my most disabling condition since junior school some 40 years ago. I was put on warfarin in 2004 with a dream that maybe I could half my headaches. i have acheived that and more. However hormones at age 50 have meant a slip back a bit.
I am set at 3.5 -4.0 but function pretty well around 3.1. I self test and alter my own does and have very unstable INR but have no clinic to help.
If my INR drops to 2.8 my hedaches, brain for and fatigue come crashing back in.
Thank you for your replies, now i need to somehow get my GP to believe this, he says he is happy if my INR is between 2 and 4, the trouble is it has taken 6 months to get to what was 2.8 and has now dropped back to 2. He will only test me monthly and refuses to adjust my warfarin levels whilever my INR is between 2 and 4. I have tried to discuss with him what I found out from my own research and he refused to read information I had printed out and said I shouldn't hold my breath thinking a higher INR would give me any relief from migraines, its like he is not interested in knowing anything about APS, due to my strokes and siezures I am unable to take anything but panadene for migraine which is like eating tictacs - they don't help at all, so i have to lay down somewhere quite and dark, doesn't leave much time for a life unfortuneately
thanks again kris
Hi Kris
My INR range is between 3-4 but rarely settles within the range. I have been experiencing a number of cluster migraines (5 or 6 in a day) despite my INR being around 3. Not sure whether it is just part of the condition. Every good wish, Paul
Kelgem, I would not stand for having a doctor like that. Was the other one even worse? Aren't there others. Could you get the neurologist to advise him of appropriate care. Can you get a home testing machine? You can buy them on amazon.com? Then you could just use the monthly clinic checks to be sure your home testing machine remains accurate. There are algorithms you can use to adjust your own warfarin and get your INR up to 3-4 and see if it helps your symptoms and I have seen studies showing patients who self regulate heir warfarin have the lowest rates of bleeding and clotting.
I got symptoms which were initilly diagnosed as migraines (visual) but later I got dignosed aps and once the INR went up I stopped getting them. I had many years misdiagnosis.
Hi, my migraines do stop since my inr is adjusted correctly. Mine was at 3.2 yesterday.it makes a huge difference for me. All the best, leda xx
My INR levels are between 3-4 and I still get headaches everyday! It may be different for other people but not for me.
Haematologist still says my migraines have nothing to do with APS/Hughes
Now I'm told that my INR has to be between 2-3
Psoriatic arthritis 
