Hi I have been diagnosed with Aps for 9 yrs and I am now 40yrs old. I have been suffering with cluster migraines which have currently got a lot worse. They come in blocks for 4-5 days around ovulation and periods. My Gp talked about HRT but then switched to say I cant try it as I have a risk of blood clots. My options are now minimal and I left the GP in tears. Has anyone had any experience in this please.I have tried lots of gp tabs to prevent them but nothing works. Life is very hard as a mum and a working mum too.
Many thanks in advance
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I read what you had asked 7 years ago when Dave (Admin) and I suggested you should have a higher INR. Then I think you saw prof D Cruz and he changed to Aspirin and Clopidogrel (did I remember that correct ?) Then I do not know what you did and how that drug worked for you. Did you get cluster migraines with Warfarin? Probably you did as you were not stable and high enough with the INR.
May I ask if you are triple positive (incl Lupus Anticoagulant)? Prof D Cruz knows this illness but you could not manage your INR when on Warfarin and perhaps therefor he switched you to something that also would work for APS. Perhaps you should see him again if possible. We need a Specialist!
I wish you luck to get rid of your migraine. Understand that a GP does not understand the whole picture and that we have too thick blood that has to be thinned in a special way. Perhaps it does not have to do with APS. I had a lot of neurological symptoms but never cluster headaches.
Yes I went to London and was changed over to clexaine and asprin as I could not keep a stable inr. Maybe you are right and another trip to see him would help me. I am under a rheumatologist at the moment.
Yes I did get migraine but it was more of a foggy head with warfrin. It has never been this bad and it feels like I only get a few days free of them a month.
Thank you again for your msg. I really do appreciate it
Yes, Clexane it was of course. Are you triple positive? If you are positive to Lupus Anticoagulant you perhaps do need Warfarin. The big trouble for us is the difference between the fingerpricktest and the vein test with CoaguChek XS. I used that machine but the difference was as as big as 1,5 several times and that is not acceptable so my clinic changed to iLine Microsystems S.L. (microINR). The vein test is always the correct value. With this machine the difference in INR is perhaps only 0,2 and that is ok.
As I told you I live in Sweden and we can selftest and get a machine and that will not cost us anything. If we need it as I do. Hope your Rheumatologist is a Specialist of APS. Talk with her if she or he understands.
Sometimes some of us with APS have noticed that we need a certain INR when our symptoms disappear and that can be at the same INR each time. If we go below that special INR our symptoms start all over again (usually us with neurological symptoms and perhaps triple positive) but perhaps others also. I have heard during the years so many of us needing a correct INR usually near 4.0, but some of the Doctors are so afraid of a bleed and do not dare to accept it. They do not know that we do not bleed from APS but clot a lot. Therefore that is one of the reasons why we need a Specialist who is well informed of autoimmun illnesses and works with it daily.
Hi, very important to check in with your main consultant re your INR etc, also to check your B12 as if that is low it makes any headache far worse, also to ask their opinion on whether you could try that, I know when I was still in that phase my monthly cycle was dire and did include awful headaches. I used to lie in Epsom Salt Baths, which greatly relaxed me at night and did help a bit. It is likely that they will need to test your B12 levels to see if you qualify for injections, worth ruling them in or out. MaryF
Thank you so much for your message. I had my B12 checked and iron levels and they both came back ok. Thank you for the thought though. I will definitely check in with him and see if he will see me soon. Thanks again
Worth also asking for a specialist gyne consult about HRT, some forms (eg patches) may be useable. Also low dose progesterone can help. But GPs are inevitably nervous about giving it and err on the side of caution.
Hi, sorry to hear about your cluster migraines. Have you tried seeing an Osteopath or Acupuncturist, both of whom often have great success in treating headaches and migraines. I wish you luck.
I used to have migraines until I discovered I have gluten sensitivity. I made this discovery by total accident as a friend nagged me into trying th Atkins Diet , which, with its emphasis on protein, is a gluten free diet. My energy returned, the headaches disappeared and my blood markers for APs went from sky high to what one hematologist called " boring. " I remain on warfarin but eating no gluten and I remain headache free. Many of us are actually allergic to something we eat every day -often considered a healthy food. A further example --years later a consult with Functional Medicine doctor revealed I am also allergic to cashews. Cashews!? Of all things? But now cashew free and my health took another leap toward peace and joy. The most common food allergens are: gluten and dairy and certain nuts. It is best to work with a doctor or a nutritionist, but, you might try solo eliminating them from your diet for a couple of weeks to see if the headaches go away. If they do disappear, and then return when you add one or the other back, you will most likely have an answer and a route forward.
This is my personal experience and not a medical advice:
I do warfarin and self test every other day with microINR machine aiming to 3-4 INR range.
On Rivaroxaban I would wake up with headaches everyday.
Having listened and read to main experts on this field, Warfarin inhibits the coagulation cascade from triggering.. and that makes us far less likely to clot.
I'm APS triple positive and been managing with this strategy for some years.
I have found that I can have migraines if my inr is too low, but that’s not the whole story at all.
I can have them if my inr is fine.
I agree with a low inflammation diet- and avoid dairy ( it’s the casein- not the gluten that’s the problem , assuming you do not have celiac’s.) avoid gluten for the same reason.
Also try to avoid setting off your histamines-that’s another big discussion- red wine, chocolate, pineapple, dark meat in chicken or fish- avoid and that will be a good start.
But the thing that has helped me the most: Aimovig 140mg shots monthly and ubrevly tablets for break through/ abortive migraines. ( or nurtec for that but nurtec did not work. ) my neurologist handles this for me. It’s the only thing that comes close to helping.
My sympathy with this - I must note to all that cluster migraines are unlike any other migraine known.
This may or may not relate to your APS?
If you have definitely related to your cycle then you must ask to see a gynaecologist, there are things they can give you to calm the hormones that dont increase the risk of blood clots.
Please keep trying - with cluster migraines, the clue is finding the trigger.
I really empathise with you. I’ve had a headache to some degree every day, since I was 11 and my periods began. I’m almost 56 now
I’ve had just about every test and scan imaginable and no cause was discovered. When I was initially diagnosed with APS I was put on 75mg aspirin daily and that helped. After a blood clot on my brain I was also put on warfarin. Unfortunately the whole 5 years my INR was unstable. I discovered that when it was higher, my headache was only 3-5 out of 10, however
When it was lower the headache increased to a 7.
After the INR swung even more wildly (up to 20 yes 20) I was hospitalised as it was so dangerous I was put on Apixaban. Not the best choice for APS but they weighed up the options.
My headaches settled at a low level until after covid when for about 3 months it was 8 to 10. I was totally disabled by it some days and crept around in a near silent world.
I was given a drug by a neurology consultant who specialises in headaches (he is based at Kings Hospital London and visits local clinics thankfully) called Candesartan at the low dose of 8mg (taken as I get into bed) which started to decrease the intensity immediately. Most days it is now 2 to 3.
I had a total hysterectomy (ovaries too) when I was 32. I was on HRT until the APS diagnoses.
I hate taking even more medication BUT I hated the severe, chronic headaches more.
It may be worth experimenting with new meds via your GP or asking for a neurologist consultation.
There is a pill you can get from the health shop specifically for headaches, it begins with a ‘D’ sorry I can’t remember the name maybe someone here knows it?
A few years ago I went to see a consultant for menopause issues as the hot sweats 24/7 were horrific - that was a waste of time as she could not advise any form of HRT or treatment I could have
Her only suggestion was eat yams ; when asked how many, she casually with a straight face said “A sack a day!” I mean how ridiculous. I was speechless. Needless to say I didn’t bother with that and got nothing from that consultation 😭
Good luck. Let us know how it goes. Love and hope Woo 💋
Currently going through the exact same thing. Been pre-menopausal for years, and am now 44 and am really going through it. Started to get cluster headaches about 2 months ago (also coincided with my periods which have lately become extremely heavy, to the point I am now having to take progesterone every month to stop the bleeding). Have spoken to Hemo (they are sure it has nothing whatsoever to do with my warfarin and also to add I have been on warfarin for 28 years now). Usually suffer with migraines so I take Triptans for them. GP has told me to use the triptans for the cluster headaches as well for the time being (which are a bit hit & miss). Never had a cluster headache before in my life and because of all of my comorbidities, plus the fact I am on warfarin, they are referring me for an MRI just to be on the safe side. Luckily, my children both young adults now (although still living at home) and I don't work due to my health but I really feel for you. In regards to HRT, I was told a while ago that I wouldn't be able to take it due to lupus & APS etc (in all honesty, apart from the savage bleeding and these funky new headaches, I seem to be coping quite well with the flushes etc at the moment) but it is something I am going to discuss with hemo & my rheumy (just in case I need it at a future point in time). Just to add, my target INR is 3.5 to 4. It's generally pretty stable.
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Haematologist still says my migraines have nothing to do with APS/Hughes
APS or Not
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Do haematologists know much about APS? Am poss being referred to one pre cholecystectomy. Tested pos for APS Abs, but test needs repeating.
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