Has anyone experienced continuous rolling migraines for a week?
I don’t usually suffer from migraines, other than the odd visual aura if my INR drops below 2.
For the last week I have had frequent daily auras and headaches.
The auras stop & start throughout the day.
About 4-5 times a day I have a ‘proper aura’ lasting 20 mins followed by bad headache & fatigue then couple of hours later the cycle starts all over again 😵💫
Also getting lots of smaller, shorter auras, flashing lights etc most of the day.
Most days the aura starts as soon as I open my eyes.
I’m exhausted with it, can’t drive, can’t go to work and completely miserable ☹️
I have had head CT, full eye exam, eye scans & photo etc all fine.
Blood pressure & INR fine.
GP thinks my thyroxine level might be too high so blood test for that this afternoon, but I’m not convinced.
The only thing he’s given me is codeine (he says most migraine drugs not o.k with Warfarin)
That knocks me out so I suppose some relief if I’m asleep, though I have woken up in middle of the night with an aura going on!
I’ve googled for hours & can’t find anything about having migraines with aura continuously like this, don’t know what further tests to suggest to GP.
I can’t cope with this much longer & am very worried ☹️
Hoping you wise people may have some suggestions.
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Janeh1960
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Have you asked about taking Aspirin? That is an anti platelet and can be taken with warfarin so if you blood is too sticky and causing these migraines. Aspirin should help a bit.
It depends on what you are taking the aspirin for! If only for pain killer than yes you are right but some people are told by their haematologists that they also need to take aspirin or clopidogrel because they need the anti platelet effect they offer that is not given with warfarin. Obviously it’s something that needs to be discussed individually with your Doctor.
I’m so sorry u r suffering so much. I’m a massive headache sufferer.
I recall when I was in year 6 aged 11 I had a headache. It didn’t go. Mum took me everywhere they concluded some people are prone to headaches.
I had a headache to some degree every single day since then. It makes life hard. I love music, going out and chatting but often can’t do any.
About 10 years ago I was diagnosed with APS and put on asprin. Immediately the headache became a 1 or 2. It was fantastic. Then it started to get worse again. After a blood clot on my brain I was put on Warfarin. Soon we realised when my INR was high I felt great. Eventually my INR was set at 4. When I was below that my headaches were awful, I was totally exhausted and everything hurt.
After 5 Years due to having wild INR swings I was put on Apixaban. At some point the migraines got worse and I was put on 2mg of Candesartan it worked well. Settling a 9/10 3-week migraine in days
Since my dose has been increased and now I take 8mg before I go to sleep. I still have a daily headache but not so many migraines. When I do they last up to 3 weeks and I’m suicidal With them
There are things you can take so insist on someone listening to you. Good luck xxx
I am so sorry you are having these issues! I wish I had a practical suggestion, but... all I can ask is Are you consulting with a provider who has experience treating APS?
I am so sorry you are suffering. I understand not finding a specialist. I am in the states. My Drs are clueless. I was on both warfarin and aspirin for 4 years, then got a stomach bleed. I was also stressed at the time from just getting two new very involved foster kids. Not eating and aspirin don’t mix. Oops.
Don’t stop searching for answers. I will pray for you Sending hugs across the ocean to you 😊
sounds like you need to be referred to an APS centre. Either your warfarin needs a tinker or perhaps you need to add in an anti platelet. If not any of that then a headache specialist. They can prescribe brilliant medication these days depending on the type of migraine you have. I hope you can find the answer.🤗
So sorry you are having these debilitating migraines . Iwas lucky mine stopped when I was put on Warfarin several years ago . I had had them all my life . The only other thing I can think of doing is perhaps looking at foods that might affect you and trigger or make worse the headaches . I follow the autoimmune protocol diet to some degree but watching out for high Vit k things that might interfere with my INR . My INR is 3 to 3.5 range .
I am very sorry you are having this. With the exception of the aura, your story sounds similar to mine. I was on warfarin over 10 years (triple positive and high titres, hashimoto’s, sjogren’s, LA etc., and despite obsessive food planning, my INRs were very unstable resulting in blood draws every 2 weeks mostly. Unable to self test due to LA.) and crippling migraines. I would get a half hour or an hour here and there free of it, but I had so many triggers they would start up again. I retired early due to the migraines. I couldn’t function.
What helped me was my genius APS specialist wouldn’t give up, and we tried one change at a time, nothing worked. The last ditch try was to get off warfarin and onto apixiban. It worked. I have been doing great on it for almost 7 years. Migraines have crept back some and I’m now on Aimovig monthly.
Don’t give up! Find another doctor. This is not “just a headache “. You are suffering and you need your life back.
Do you have a specialist for your Hughes Syndrome/APS? It might be useful if you do, to talk to them as well as GP, also helpful for your GP, another thing to rule out is what your B12 levels are like as no uncommon to have that and it does have an impact on headaches. MaryF
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