Just finished an ambulatory EEG. Seems I'm having mini seizures. Doc wants to put me in the hospital to do a epilepsy monitoring over 3-4 day period.
He seems to think, most if not all my neurological symptoms are caused by the mini seizures.
I have APS, but wondering if these seizure are happening because of the APS directly or from the brain damage caused by the APS.
I have a couple of other tests I also have to do as well, but I'm told I can take meds to prevent the seizures. This is good. I really don't want to lose my driving privileges.
What's the experiences from the members here with this?
Written by
mylafont
To view profiles and participate in discussions please or .
Where do you live? In the US there are some hospitals that seem to be more interested in proving you are having fake seizures. The good think about that is if they decide they are "non epileptic" they don't take away your license. Personally, I believe this is yet another medical fad. Also, I'm wondering if APS seizures look the same as epilepsy.
I spent 10 in the hospital with my head hooked up to the wall and a camera on me and found out nothing, except that heperin which they gave me to prevent blood clots, seemed to bring me back from having some kind of cerebral flare, including twitching limbs, strange movements of my limbs, trouble speaking and a missing memory. However, no one in the hospital listened to me enough to realize this had happened and I was fried by the seizure and didn't realize I had gotten so much better.
Months later, I brought in my records to my GP of over 20 plus years. He read them, and his reaction was, "What a bunch of idiots."
One of the worst experiences in my life.
I haven't been officially diagnosed with APS, but have found both heperin and aspirin help with my illness. But I live in the backward country of the US.
I've had epilepsy all my life and was diagnosed with aps almost 2 year ago - I was having seizures with no explanation no head injuries or illnesses I've went all my life fighting the hospitals and proving to them that I have actually got epilepsy - aps is a blood related illness one of the linked on illnesses is epilepsy so I'm guessing as I was born with epilepsy and this aps blood then the two have to be linked somehow - I drew the line at the hospital stay and told them I wasn't proving anything to them anymore I've done it enough in the past with clear diagnosis of epilepsy so their job now is treating it not trying to prove me wrong I only deal with my gp now I won't see a specialist anymore
I think I confused you Mylafont, but what I was saying is what bevjane just said, except I only had one seizure. My brain fog was so bad I forgot how to get home. I was also in a lot of pain. Before I had got sick three weeks before I couldn't have been happier. Suddenly in the hospital I felt like I was been accused of something, which it turned out I was--of having fake seizures. But this seems to be a thing in the US. If your EEG doesn't look exactly like it is expected, they say you are faking it. With me they were actually lying in my records. For instance, they said she says "Pt smells benzene." I don't know what benzene smells like. It was filled with perfect BS. Anyway, I would never do that again, knowing they have their own agenda which wasn't to help me. They really seem intent on proving people with seizures are having some kind of psychological seizure. So I had a police woman watching me, nurses asking me if "I wanted to kill myself or someone else," and psych guys coming in and telling me I was depressed and refusing to hear anything else. (My rheumatologist had put me on Zoloft, since I couldn't take Cymbalta.)
Like I said though the good think of them thinking I had a non epileptic seizure was that they don't take your drivers license away from you. By the way there was a lot of fighting among the doctors.
In other words, I would beware of going in for one of those tests. The doctors maybe trying to help their careers, not you.
In my case, I'm hoping it was a one time thing. For instance, I went blind for 10 minutes when I was very overheated, and it never happened again. Most of my neuro symptoms do return, but not all of them.
Also, I don't know if I have APS, but since they gave me heperin for their own purposes, and I got dramatically better very quickly, I have wondered if APS had made the EEG look "funny," which is why they though it was "non epileptic."
Other than my original GP (who told me I was psychosomatic, put me on antidepressants and sent me to psychologists), my current docs are trying to find out why I'm having all these neurological symptoms/episodes.
So far I have no reason to doubt their motivations. I do have to say it had my husband on my side expressing what he was seeing me go through.
I'm so sorry you've had to go thru all that with your doctors. Seems it's the norm with this disease. I've had nurses helping set memo for tests ask why I was there and responded I've never heard of that.
June is APS awareness month here in the US.
ASP foundation of America is on an awareness campaign thru their social media accounts.
Once you are formally diagnosed that you are getting epileptic or genuine seizures, you will be losing your driving licence. 2 years, I believe, in UK. I'm sure, it's similar in the US / different states in the US. How long, I'm not sure.
"Seizure disorders" is known as one of the symptoms of APS besides migraines and other cerabral manifestations.
I have not had it. Your should be diagnosed APS and if you see an APS-doctor who knows about APS, I think that you should feel much better when you are well and proper anticoagulated.
My INR has been somewhat regulated for the past few weeks. I did have one that was too high-4.9 and one that was low-2.4 recently.
I kept complaining to my docs about the neurological symptoms and was sent to a stroke-headache neurologist. He is the one who via ambulatory EEG found the mini seizures. Have three more comprehensive test scheduled next week. Hopefully I can get everything diagnosed and properly treated going forward... and back to what is normal for me.
Then I can focus on learning how to self regulate via self testing. I was approved for that and waiting on the nurse to contact me for training.
You know that we have found here that the Neurologists do not "get" what APS is about.
It is good you do the tests and I am glad you are approved for a selftesting machine and education. I know how much you have been working for it. Hope you will find how much it helps to take control of your warfarin.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Severe seizures all day.....
Seizures, Shaking &/or Intentional Tremors Anyone?
Bleeding disorders alongside APS
