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Sticky Blood-Hughes Syndrome Support
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Seizures and partial seizures

Been to clinicl this morning, I have lots of different things going on with the latest being tonic clonic seizures. In August 2012 I started with what I call frozen episodes, I've brought this up in rheumy and neuro appointments but not got anywhere until the full blown seizures. They now say these are probably partial seizures. I've looked back through my INR records and I started with a target of 2.5 (2-3), in feb 2011 this was changed to 4 (3.5-4.5), then in August 2012 changed back to 2.5 (2-3) as I was still having bad headaches and other things and I was worried about INR being that level. Bizarrely now I've looked my frozen episodes started at the same time as this change (although when I had the first two my INR was higher), I'm now thinking could there be some relation between this and wondered if anyone else has any experience.

I do have other stuff going on and rheumy and neuro disagree, I've been diagnosed with vasculitis (neuro says vasculopathy), lupus, APS, been diabetic a long time and then now the seizures. In clinical today I said that I think you could put three consultants together and they could argue about me (the dr today agreed!).

Interested to hear if anyone else has noticed a relation with INR and seizures. Also when I have the frozen episodes I remember everything can speak but feel like the plug has been pulled on me. On Tuesday I ended up going to A&E (which is a rare thing) as I've had really bad headache for a few weeks and numbness on left side of face but then I was struggling to communicate and I felt like something wasn't connected properly (not sure how else to describe it). They have said that they think I had a partial seizure (which caused the communication issues) and my INR was too low which was prob causing headaches and numbness. Would like to know if anyone has partial seizures where you and people around you are unaware that anything has happened. In clinic today the dr said that it can be just one or two seconds so you're not aware of it and also said that APS can cause seizures.

Thank you

3 Replies

Hi Annie

I've been getting increasing episodes of momentary dizziness, followed by headache, shakiness and sense of soreness in the abdomen.

I saw Peter Savundra in London, on Prof Hughes' recommendation, and he explained that it is caused by ischemia in the ear, which then causes the brain to react strangely.

Best wishes.


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This is the closest I have come to hearing about someone with something similar happening to them! I am just a bit excited and I think that I might be onto something. I have been on coumadin warfarin for about 6 years for unrelated health problem. It has ONLY been since being on this blood thinning medication that I have experienced these weird, spacey, frozen episodes that come and go, lasting mere seconds to maybe 15 seconds. I hadn't had one for ages and then got one the other day...and guess what? My INR was 4.7!!! Could there be a connection?? Yes I think there may be!! I have not been as diligent as I should with having my INR checked but now I am almost looking forward (sounds weird!) to having another partial seizure (as was diagnosed) to see if indeed my INR will again be way too high...


Have you chequed your bloodpressure?

I had those "frozen" sensations for several years Before i started Warfarin. After warfarin they are gone like most of my neurological issues and very high bloodpressure.

The other day I had that "frozen" sensation for half a minute perhaps a couple of times and I could not understand why. It was one of those hot days here in Stockholm and my INR was rather low that day. I have a bloodpressuremachine on doctors order and my bloodpressure was rather high and then low. Earlier i had a very high bloodpressure when i got those "frozen sensations" Very weird isnt it?

Kerstin in Stockholm


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