Seizures

[minnime63]

Does anyone on here suffer seizures? I have APS, Lupus and two aneurysms in the brain (small at last MRA). Most APS problems have been cerebral (silent stroke and TIAs). I've had 3 seizures since June and trying to work out cause/triggers before my next neurologist appointment. I've read that it would be extremely rare for the aneurysms to cause seizures because they are small so wonder if it is blood related. INR was below therapeutic range five days ago at 2.5 and was only 1.6 when I had the previous seizure. Have I just answered my own question?!!!!

[MaryF Administrator]

Your INR is best at the top of your range, and often Hughes Syndrome/APS patients require a higher INR. Always set by your particular consultant. Yes others on here doe have seizures. It is clear that your doctor/consultant needs to help you keep you INR in the best range possible. And... yes you probably have answered your own question. MaryF

[minnime63 in reply to MaryF]

Thanks Mary. My range is now 2.5 to 3.5 but the local blood clinic don't seem to care if it falls below. My APS specialist wants the range to be higher still but can't get a response from neurologist as to if it's safe with the aneurysms 😢

[Lure2]

Hi Minnime,

You have probably answered your question.

An INR of 1.6 means that you are not anticoagulated at all. Try to selftest and have a Fragmin shot at home to take when your INR is under your therapeutic range.

Best wishes from Kerstin

[minnime63 in reply to Lure2]

Thanks Kerstin. My haematologist recommended I don't self test because it can be unreliable with LA positive. Last time I fitted at 1.6 I rang the haematology clinic to ask if I should have shots at home. I got the nurse who said if it happened again to go to ER! Seems they don't like us taking control!

[daisyd]

I have seizures which I have medication for, I didn't have epilepsy until i was about 30

I think the reason was brain damage due to Hughes syndrome still on epilepsy medication along with Warfarin with INR range around 3.5 no thanks to my neurologist at my local hospital who didn't believe Hughes syndrome existed !

[minnime63 in reply to daisyd]

Thanks, daisyd! It is unbelievable how often we are still coming across ignorance about APS. It seems they are taught about the link with miscarriages but not late-onset. x

[justlymostly]

Hi I had seizures many years ago (1991) and am still on medication as they say "there is still a flare" in my brain. I was diagnosed with Aps in 1996 and have been on warfarin since. The flare is still there so the experts say seizures were part and parcel of the clotting disorder. My INR range is 3 - 4.

[minnime63 in reply to justlymostly]

Thank you for your reply, justlymostly. Can I ask who you saw about them? Was it your APS specialist or a neurologist?

[justlymostly in reply to minnime63]

From memory (not brilliant😃) I first saw an epilepsy specialist at Kent and Canterbury hospital who passed me to neurologist for answers who then passed me back to GP. I guess if I have questions now I would ask my neurologist Dr Holmes at Guy's in London before anyone else. Best wishes x

[Lure2 in reply to justlymostly]

Hi justlymostly.

I wonder how is it with your mitral valve regurg and what did prof Hunt say about anticoagulation? Is an INR of 3.0 enough do you think? I must be at an INR of 4.0 to feel ok and I selftest today.

Best wishes from Kerstin in Stockholm

[justlymostly in reply to Lure2]

Hi Kerstin

Professor Hunt says if my INR drops below 3 for a while I must have clexane at therapeutic strength. My INR range is 3.5 to 4

It usually measures 3.5 to 3.6

Kind regards

Julie

[Lure2]

I have Lupus Anticoagulant and selftest but I live in another country than you. What do they say about switching you to Fragminshots if your INR is still instable. Many on here are on other anticoagulations if the INR is difficult to manage. Just a thought.

Kerstin

[minnime63 in reply to Lure2]

They are very casual about it all. I will talk with my APS specialist when I see her next.