Obviously I Suffer from APS , I Know From The Past When My INR Been on Lower Side Can Suffer From Headaches , Just Wondering If Any Of The APS Followers In This Group Have Experienced Headaches When The INR is On The Higher Side Eg 4.8 -4.9 , My INR Range 3.5 - 4.5 , I’ve Been To Get Checked From My GP All Appears Ok So Just A General Question, I Have Venus Blood Test Not Finger Prick , Having Them twice Weekly, Anybody Go Longer For INR Tests Because Don’t think this helps With Keep upping and Downing my Doses ? Any Suggestions would be great, Just I’m rather Anxious to go longer but I know patients do
Thanks
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Markgammon06
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Hi Mark, sorry your getting these headaches/migraines.As you know I'm not on wafarin, but I can say even when on heparin I still have periods of headaches for no reason!
Sometimes just days, sometimes a few months for no rhyme or reason.
There is another post at the moment talking about home testing - maybe this may help?
Please talk to your GP about these new symptoms, as well as home testing.
Thanks I believe Home Testing Is a no go Already Seen Gp Before about This And I believe because I’m such high target of INR gives you false readings , I will monitor my heads But Not really Causing Pain today so that’s good but I was just interested in whether any other patients with a higher result had the same symptoms Thanks Again
Hi Mark,I totally empathise with you. Many will recall the extreme issues I had with my INR. Like you I was set at 3.5-4.5.
Since age 11 I experienced a headache to some degree every day.
Finally I was diagnosed (about 35 years later).
I responded well initially to Aspirin but after a blood clot on my brain in 2015 I was put on Warfarin. I struggled to get a high target INR.
When I was 4-5 I felt amazing. Under 4 I felt terrible under 3 I couldn’t get out of bed, had horrendous headaches and took Clexane injections. The bruising across my tummy was absolutely horrific. But there was no choice even when I had lumps at each injection site as hard and big as golf balls and ran out of space!
I spent 5 years going to hospitals for blood tests. Sometimes daily. Usually bi-weekly, occasionally weekly. My dose was continually changed. (My husband was convinced it wasn’t right to keep changing the dose).
Sometimes they had to come to test me at home, when I was low.
I had to regularly take 20-22mg of Warfarin. I was so careful about my diet. My whole and I mean whole life was governed by APS.
Then at the start of 2020 my INR went to 19. Yes 1 - 9 ! I was sent to A&E and admitted. Given vit K. My INR dropped overnight from 19-3. I think my body went into shock, after all blood is everywhere! I was hypothermic, my observations were low and I felt terrible. I was sent home. As they considered 3 to be OK. Two days later it was 20 so the same again! I was traumatised, my body was traumatised and I was at my wits end.
My haematologist announced that unless they found an alternative to Warfarin it was going to end up killing me. [a problem specific to me is having Long QT Syndrome - heart problem, many drugs could cause cardiac arrest] so the hunt was on. Eventually it was agreed that if I was still only single positive (lupus anticoagulant) I could change to Apixaban. Thankfully I was and so made the transition. We all know Apixaban isn’t ideal for APS treatment but it was my only option.
After a couple of weeks of close monitoring there were no more INR checks. After 5 years, I felt free at last as the hospital I had to attend was almost an hour each way driving so each test was 3 hours. A chunk out of my days. I was not suitable for home testing as the hand held monitors don’t have the range I required and most times I needed a vein test too.
It was an easy transition in early 2021 with no issues at all. I have a Venus blood test every 6 months including liver and kidney function tests. All is good.
My GP had just prescribed Candisartin each night a a migraine preventative [I already take a daily beta blocker for my heart].
Finally after almost 40 years I’m virtually headache free apart from the odd breakthrough one.
I feel I have some of my life back I just need to work on the incredible fatigue, muscle pains and weird ‘electric shock’ feelings in my limbs. (I’m seeing a neurologist 34 February)
Please ask if you want to ask me anything else. A long st but hope it is helpful
Good luck 💋 x
The extensive bruising on my tummy after 3 Clexane Injections
Wendy, so glad uou are on the better side! And Mark, as you read here, your story is not unique. APS is a unique disease in that its complicated, biochemically controlled dominoes can cause multitudes of symptoms and treatments. Keep asking questions. Document your symptoms alongside of diet and activities.
I think it is a good idea to regularly check in with GP/specialist regarding headaches if worse or new, and be aware that other reasons can also exist for headaches as well as those so good to think of keeping a headache diary maybe, which will obviously show a pattern with your INR and Warfarin dosing. MaryF
Hope you have a Specialist and not only your GP to help you with the INR. I answered your question a couple of years ago but you did not answer my questions back to you.
I may have some headache when the INR is too high. The neurological symptoms from APS is different from person to person and very few have also exactly the same sort of headache. I had problems to see and not headache when I had my TIAs and had too low INR.
Usually I do not change my Warfarindose often but instead change the amount of greens. As I said we are all different and I can lower my INR in 12 hours perhaps with some brusselsprouts. It takes usually more time to get the INR up. You should have something like a Fragminshot to take when the INR is too low, under your therapeutic range that is.
Yes I Do Have A Hematologist As Well As My Own GP , Seems To Be Getting Better As Regarding The Headaches But Have Read Your Comments And Will Just Monitor Thanks For Your Reply , Can I Just Apologize Not Replying To You a couple of years ago , Don’t Visit this Site often so maybe I missed your reply to me so sorry Thanks Again
Hope that Hematologist is specialized in APS. So very few Doctors are actually.Look for someone who is a Specialist in autoimmun illnesses that is very important otherwise you will never get the help you need that the neurological eyesymptoms are also embolies or microclots or TIAs from too thick blood.
I have been speaking about that book "Sticky Blood Explained" by Kay Thackray for at least 8 years. I have all the books in pocket.
The first book with this name was published in 2010 (this is the book I speak of and which I have read every line in) and the second book was published in 2018. Both books are very good. It is a must for us to have it.
Prof. Graham Hughes has also written several good books and one he has written together with Dr Munther A Khamashta , is "Hughes Syndrome: Highways and Byways".
Thanks For Your Reply not Sure if My Hematologist Specialist in APS Because During This COVID Time Haven’t Been Seeing them face to face just a telephone call and All different Hematologist So will take on board and find out
I’ve been saying for quite some time… there so much more to this story that the INR alone.
Sometimes my INR is in perfect range and I’ve got a ranger of a migraine.
A few things to consider:
1. Many people have migraines who do not have APS. I think because we have APS we have a huge tendency to to be one of those people .
Why?
“CGRP” - Calcium Gene-Related Peptide
Have a neurologist who is a “ headache specialist, explain this to you .
There is a medication called Aimovig ( erenumab -aooe) 140mg self administered once monthly injections ordered by neurologist ( which can be very difficult to get approved- by neurologist had to write a letter stating I had failed all other options and vomiting my warfarin due to migraines was life threatening) to get it approved for me.
The medication is a blocker CGRP blocker-
My migraines have gone from 18 a month to about 4 a month. There is also an oral abortive- two to try and see what works for you :
1. Nurtec- did not work for me
2. Ubrevly- does work for me- much better than sumatriptan. We are not supposed to use triptan with APS by the way.
If my InR is low- then I still have migraines! Ah ha!
I used to get migraines with aura regularly, like one a month or two. Then I figured out a lot of my triggers and reduced that to only a couple migraines a year. After I started blood thinners they almost stopped completely. About once or twice a year, I'd start to get the aura, but it didn't complete and I didn't get any pain. This past year and a half though, the migraines did seem to come back a bit more frequently and with more complete auras. I wouldn't get any pain but I would feel really out of it. No correlation to my INRs. My range is 2.0 to 3.0.
I also get tested by vein draw. I get it done once a week. The most I can stretch it out is two, but that rarely happens as I'm either on a trend up or down or hanging out at one of the extremes. I'm usually fairly stable in my dose (my most typical dose is 20 to 25 mg a day, but I've been up to 35 mg a day and as low as taking 15 mg on several days with the rest being 20), but it has been all over lately due to a change in diet. Our kitchen got ripped out at the end of November due to water damage and here it is the end of January and still no kitchen. So, my diet has not been stable. They also don't want to stick me more often than once a week because I'm a difficult draw.
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