Are these seizures

Can anyone tell me if what I am experiencing are seizures. I was diagnosed with a AVM in my right front temporal lobe in March. After ct scans, MRI`s and a 72 hour EEG I am no nearer an answer as to what is going on. I get muscle twitches on my left side, mostly my leg but also my arm, numbness around the left eye, pain that seems to shoot through my brain from right to left, and sometimes my scalp feels like it is crawling or tightening. I did suffer for a kind of black out or absence, this lead to the tests.

Sounds very much like it could be seizure activity. Did they not find anything on the EEG?

Nope not a thing, just my luck that I did not have any events whilst hooked up to the EEG. Had plenty the day before I went into hospital, but none while I was there.

Jake M said:

Sounds very much like it could be seizure activity. Did they not find anything on the EEG?

Hi John,

My AVM is in my front temporal lobe as well and was very large. Now it is smaller but growing again.
I have alot of seizure type activity but they have not found anything on eeg’s but I could not fall asleep for them either.
I get that crawling feeling as well and very sharp stabbing pains right in the spot where the AVM is.
I wonder if it has something to do with location of the AVM because it is a fairly silent part of the brain if they are not as able to put a finger on some of our symptoms.
Other parts of the brain control more obvious things like speech and motor function and are easier to figure out where our’s are more difficult.

I think you are the first person that I have communicated with that has their AVM in the right temporal lobe so I would be interested in chatting with you as you progress. My ruptures and surgery were 11 years ago. Please feel free to contact me sometime if you would like. You can send me a message through this site or I could give you my personal email.

Take care and keep us updated on your progress
Susan

Hi Susan

Hi Susan

finally someone that is feeling the same things, thought I was going nuts and imagining it all. Well thats the impression I got from the doctor anyway. I think my AVM is relatively small, they did not give me a measurement or describtion of it, but they showed me the MRI scans and it did not look huge. I have suffered from migraines since I was 18 ( now 46 ) so my scan showed plenty of white spots from the migraines. So far nothing has been said about treating the AVM. I have a follow up appointment in October so I am keeping a journal of all my events.

Susan T. said:

Hi John,

My AVM is in my front temporal lobe as well and was very large. Now it is smaller but growing again.
I have alot of seizure type activity but they have not found anything on eeg’s but I could not fall asleep for them either.
I get that crawling feeling as well and very sharp stabbing pains right in the spot where the AVM is.
I wonder if it has something to do with location of the AVM because it is a fairly silent part of the brain if they are not as able to put a finger on some of our symptoms.
Other parts of the brain control more obvious things like speech and motor function and are easier to figure out where our’s are more difficult.

I think you are the first person that I have communicated with that has their AVM in the right temporal lobe so I would be interested in chatting with you as you progress. My ruptures and surgery were 11 years ago. Please feel free to contact me sometime if you would like. You can send me a message through this site or I could give you my personal email.


Take care and keep us updated on your progress
Susan

John,

Very good idea about the journal. I also had migraines that started at around age 17 and I ruptured when I was 28.
Dr’s and family all said everything was in my head right up until the day the 4 anuerisms ruptered and I almost died.
I felt like I was crazy alot and sometimes still do because some of the feelings and sensations are hard to describe and fleeting. You can’t always make the Dr. or those around you understand how it feels.
One of the women on here also has the crawling that you described. I always called it 100 wiggly worms crawling around in my head but she described it “her lice”.
My AVM was bigger than an egg but smaller than a lime and after surgery it shrunk 80% and they left it alone but now it is growing again so not sure where we are going from here yet.
New growth was discovered last year.

Nice to know that in location I’m not alone.

Lol I like the descriptions for the scalp thing. Mind feels like someone had crept up behind me and has grabbed the top of my head then wants to take off my scalp…very creepy sensation especially when you are trying to get to sleep. Hope things work out for you.