Got 6 day video EEG results yesterday and the seizure I had during my stay was not picked up as the consultant said it likely did not last long enough. I have simple partial seizures mostly sensory and left sided. It lasted about 1-2 mins. This was my 2nd hospital stay video EEG but the first with reduction of medication. He has suggested another video EEG stay as he wants to pick a seizure up for going forward with treatment. I have had epilepsy since 2007 and on medication since 2009. There are so many questions going through my head. One being, what if they are not seizures, then what are they? I put this to my consultant and he was unable to answer. I don't know if I can wait a year (by the time the EEG is done again and results are through) it look over a year since the last referral was made due to the waiting list etc. I am so tempted to come off the medication. He explained to me he has a few other patients in the same situation due to the type of epilepsy being hard to detect.
Anyone on here been in the situation?
Thanks
Written by
RR25
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Yes, I have been there so many times. My last one caused my seizures to take place constantly. As you said which is the same on my part no showing of seizure activity was shown on the EEG.
I ended up asking my doctor how deep into the brain does an EEG go. I was told about an inch from the surface. I then said if there are no indications on an EEG then that means the seizures are taking place deeper in the brain. We then stopped the EEG test from there on do to finding that to be the reason it never showed up on the EEG.
That can very well be what is going on on your part as well. I know how you feel as to how frustrating this may be.
Hi, this happened to me a lot and then I was told they were pseudo seizures ( I'm not sure how to explain it correctly thou they are seizures they are not epilepsy related ones) My neurologist then went off sick and I got a new one. He thankfully saw something on my mri that he didn't like and requested an other one. There is scaring on my hippocampus which was causing the seizures, which meant more tests. This time i was told all these weird feelings I was experiencing were complex partial seizures and were coming from deep inside my brain so surface EEG don't always pick them up. I got referred to London and the equipment there is second to none. I had to wait a long time, you will get there, stay strong.
Non-epileptic seizures has crossed my mind. Although I cannot find any info about non-epileptic focal seizures. Consultant has not mentioned it although that does not mean he is not considering it I suppose. For this reason I was tempted to go off medication but he insisted I stay on my tablets. The doctor has not mentioned referrals elsewhere, he suggested a scan looking at the blood vessels on the affected side. I have what is called a developmental venous angioma on the other side of my brain- non seizure side (although I have had generalised seizures)
Thank you for your reply brainstorm. Yea my consultant mentioned that by the time electrical impulses come to the scalp to be measured by the electrodes The seizure has probably passed by then and explained the size of the neurons in the brain compared to the heart. I think that was the word. Hopefully something shows up the next time and if not I hope to find out what it is.
Where you just kept on your medication even though your EEG was inconclusive?
I had three seizure like episodes between 2011/2013. On the third one I was admitted to hospital from A&E. The consultant on the ward said it was epilepsy and put me on phenytoin (had horrible side effects). Nothing found from tests and the neurologist I eventually saw said he wasn’t convinced. He gave me the option of staying on medication which he changed to Lamotrigine which I have been on ever since. Thankfully no further seizures.
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