I have had some recent events I wanted to run by you all to get your thoughts.
I had 3 mini strokes before I was diagnosed with APS some 20 plus years ago. Prior to the mini strokes I had lots of little sharp events mostly in my left temple but sometimes in my right temple. They were sharp and painful and quickly went away like a strike of lightening. After coagulation they became less and less. I had a bout of them 15 years ago and my hemotologist diagnosed them as micro clots in my brain. He added 81 mg aspirin to my 15 mgs. of warfarin along with my 600 mg plaquenil. It helped back then. I eventually discontinued aspirin but have continued with my 15 mgs. warfarin and 600 mg of Plaquenil and have been pretty good with the micro clots up until about a month ago. I awoke about 4 weeks ago early in the morning with three good jolts in my left temple but it had no lasting effect. Later that day I went to my accupuncture appointment and forgot to tell her about it. Unfortunately, when she put the last needle in my ear it sent a jolt to the left temple that left me with extreme pain and then fatigue. I went home and went to bed and woke up with these little events all over my head. I was dizzy and had a real bad headache that lasted for days. Over the last weeks the events have gotten a lot better but I am still having them occasionally and then a headache follows. I did have an MRI which was taken in the ER. It revealed the prior damage of my mini strokes but all they diagnosed me with is headaches. I started on 81 mg of aspirin as well as prednisone and continue to take the 15 mg warfarin and 600 mg plaquenil. I still have a lot of inflammation in my body and have not felt like myself since these events. Does this sound like micro clots to you? Unfortunately, I am dealing with drs who don't know this disease with the exception of my hemotologist who manages my APS-warfarin. I am not sure where he stands on the micro clots as I am still waiting for an appointment with him. I saw his PA who knew nothing about APS. I also have a good Rheumatologist who knows about APS and who said it could very well have been micro clots. I have been encouraged to see a Neurologist. I wondered if any of you have had similar events? Any insight you have would be appreciated. Also, if anyone is in the Austin, TX area and knows of a good Neurologist with APS experience that would be appreciated too.
Thanks so much!!!!
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prj789
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you say you take 15mg of warfarin but what is your INR? The amount of warfarin you take will vary based on how your body is metabolising things like food, medication, stress and illness. If you are not monitoring your INR you should be because you may well need an increase in your warfarin dose. If you are monitoring it what is your INR level set at?
KellyInTexas will probably be along to advice you about Drs in your area.
Yes, it has been calibrated to my Drs machine as well as checked side by side with a blood draw. Do they sound like micro clots to you? Heparin injections sound like a good idea. Thanks!!
I have those type of head pains periodically. I was told they were ‘Ice Pick Headaches’ but I’ve always thought them to be Microclots.
You know in Science shops they have the balls of energy (usually blue) if u put your hand on it all the energy goes white and like lightening, it goes to your hand. Well it feels a bit like that. As if suddenly something happens inside my head and the energy turns to pain. (Don’t know if u understand that?)
Whenever I mention it to a consultant they say there’s not enough evidence to say that Microclots actually exist. I always reply saying “But one day, soon, they will be able to detect them!”
In 2015 I had a blood clot, in my brain and for weeks after I’d be paralysed with excruciating pain, that lasted only seconds. But I’d hold my head and not be able to move. After I’d have like an ‘after burn’ where I’d feel relief but a sort of ‘it’s happened again’ bruised pain. Gosh this is hard to actually describe!
I do get them periodically still and they tend to occur in ‘groups’. I can be mid sentence and have to stop and hold my head and sometimes groan. Then it’s gone and I’m left with ‘the afterburn’.
I also have Lupus, Sjogrens, Fibromyalgia and prolapsed discs, arthritis and a genetic heart condition. So I’m on plenty of meds. Including: baby aspirin, Azathioprine, Prednisone, Mepacrine and Apixaban (we never managed to stabilise me on Warfarin after about 5 years I was changed).
My question is are Ice Pick Headaches the same as Microclots? I think so!!!
When I have a lot of them in a day, I feel exhausted. I’m not sure if any of this helps but feel free to ask me Q and if I can I’ll answer, as it’s hard to know what to write. Good luck.
PS if ur INR is ok then you should be protected against clots just these Microclots seem to still creep through. Apart from discomfort and fatigue they don’t seem to cause any other issues for me. Best of luck I hope I’ve helped. At least you know you are not alone! 💋 x
Thanks so much for the information and help Wendy. My events sound very similar to yours.
I did see the information about the ice pick headaches but the article I read made me feel like it wasn’t thee same. I will have to look back and research a little more.
I get ice pick pain both in the head and eyes. It last seconds. My neurologist calls it idiopathic stabbing headache and it’s part of migraine. We all know that migraines are part of APS and often they are worse when anticoagulation is “off”! I still think your issues lie in yours and it needs tweaking in some way, either more warfarin, an antiplatelet of some kind or heparin when you get these symptoms.
An MRI run shortly before my diagnosis with APS showed that what I had thought were panic attacks were actually mini strokes in my brain. i've been on warfarin over 20 years now and I've had no more panic attacks/strokes but we're all different and the medicine that works for some does not work for others. You might see if you can move your appointment with your rheumatologist or see if you can find a hematologist in your area who has experience treating APS.
I was taking Aspirin 81 and when my specialist found out I was taking it he said to stop taking it immediately. He said it does effect your INR. When I stopped taking it sure enough my INR slowly began to come up from the 1.9's to the 2's. However, still dealing with INR issues and trying to figure out my diet to get my INR stablilized . Been 2 years of struggle.
Good Luck to you just thought I would let you know about Aspirin and Warfrin.
I think you are wise to push for an appointment with your consultant, as surely they will have come across this before, and do dig out any previous paperwork that shows you have a history of this. MaryF
Prj - I haven't been on here for sometime but remember most on here . I also had a problem with my Hematologist starting in Sept of 2009 with my APS and then about micro clotting and before that it was my range for my PT/INR to finally get it up to 2.5 to 3.5 range we did bring down my 200 ml of hydroxychloroquine from twice a day to one a day . I do have a multiple amount of medical issues. i am however in agreement with all above . So Hi to all .
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