Aps & Seizures: Was diagnosed with APS... - Hughes Syndrome A...

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Aps & Seizures

JPMcGee75 profile image
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Was diagnosed with APS in 2012 and put on warfarin (INR 3.0 to 4.0) under a self testing regime / coupled with with three monthly venous validation test at the hospital and generally been getting on with life. However started having episodes of confusion, weakness in left side, speech slurring, fatigue, confusion etc that affected me for a couple of hours when episode occurred before recovering within 24 hours. Was suggested could be small TIAs and was being monitored but of late episodes have become become more intense, more often, more regular with recovery now taking days rather than hours .

Consultant order a CT Scan and from result now believes I'm having seizures as opposed to TIAs. and is arranging a follow up MRI, an electroencephalogram (EEG), full bloods and has put me on Levetiracetam , an epilepsy drug as a precaution int he meantime. I understand that circa 10% of people with APS suffer can suffer with seizures.

Does / Has anyone else had similar experiences, would appreciate any advice

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JPMcGee75
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KellyInTexas profile image
KellyInTexasAdministrator

Hello, Derek

I am exactly in your shoes, but the other way around. I was diagnosed with partial complex temporal lobe epilepsy first ( 2012) and then APS in 2016.

You are correct, about 1 % of the population suffers from epilepsy, and in 70% of those patients, the cause is unknown.

In that 1%, it has been determined that 10% have been found to have APS.

I, in fact, had my annual EEG yesterday. ( it’s done in conjunction with mri, and neuro psych testings- over a couple of weeks time. To very subtly test areas of the brain ) . It was 35 min long. Every other year my neurologist does a 72 hour study. Once I was put on anticonvulsants, I have never had an abnormal EEG.

The symptoms if TIA can be very similar to these seizures. The difference for me is with a TIA I do not feel the as floay or as ditached from my body, or as ,” dreamy...” I also have déjà-vu, hallucinations of music, visual hallucinations, and olfactory hallucinations.

I also think it’s very possible to have both going on- because both happen when the INR is too low. This recently happened to me.

MaryF profile image
MaryFAdministrator

HI, are you being looked after by a Hughes Syndrome/APS Consultant as in somebody off our recommended lists. I am guessing you probably are. Are these episodes happening at any time when your INR drops lower? The reason I ask is that some on here need Fragmin injections alongside their Warfarin. Also some have had vastly different results with their testing strips compared to what is showing up when testing at the hospital, have they had you in to do more regular draws to see what your INR is doing, as well as your home testing? If it were me I think I would want more regular testing in the clinic, temporarily just to double check this. Some on here do have seizures, it is not that uncommon, some find they greatly diminish when on the right medication. MaryF

JPMcGee75 profile image
JPMcGee75 in reply to MaryF

Thanks for this Mary - I'm being looked after by Haematologist, Rheumatologist and Neurologist and their support teams at my local hospital who are all very supportive and open minded on APS and good listeners. As to blood testing I've never had vast variances in terms of my own test readings and when they are compared to venous once. There is a standing agreement that if I fall below 3.0 and heading for 2.5 then I go in for a heparin shot. Just turned sixty four so suspect it's just me getting older and my APS maturing as well. Will certainly look to get venous checks done more often now that I'm at the hospital on a more regular basis.

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