Epilepsy & Seizures Support Group
Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...
I really appreciate this site & the info you all share. It has helped me understand epilepsy so much better.
I am going to neurologist on Thursday & worried that if the eeg doesnt show anything then he wont do anything for me.
I had 6 days of monitoring & the preliminary report stated that the video could see the blank periods (what I think are abscence siezures) but eeg didnt pick anything up. The issue I also have is that I had what the nurses said was a seizure on Thursday night where my legs booth spasmed heaps but the rest of me was stiff. On Friday I woke up very vague, confused & felt like I had been run over. Everything ached & hurt. My legs were very painful & my arms ached & were weak, my mind was not thinking clearly either. This was noted on the preliminary report on discharge as "voluntary leg movements". how can they be voluntary when I am asleep?
Since then I have had several "absence siezures" - or what I presume are that. I lose time & when I come to I an usually very confused. This last week I probably had 3 of them, one was on the scooter & when I realised something was wrong was when I was sitting on the scooter & felt like all my body was shaking/vibrating & I was sitting stationary. When i checked my catheter bag was full & I had only empried it before I left physi. o about 30 mins before. I checked it becaus I know before I got the catheter I always wet myself when had what may have been one.
Yesterday I was getting ready for work & my back spasmed really badly & was so painful I sat down. Knoew I had about 10 mins before I neede to leave for work. Next time I looked at the clock it was 15 mins later so I had to empty my bag again (had only emptied it just before this happened), needless to say I only just caught my train in the morning as I allow extra time.
I have not had the one like others with legs but several of the "absence: kind".
It is getting more scary as they are happening more frequently & all sorts of timing & i have not been given anything to help.
How do I get my neurologist to listen to me & believe that I having them if nothing showed on eeg?
Any advice would be appreciated.
Thanks in advance
I am going to neurologist on Thursday & worried that if the eeg doesnt show anything then he wont do anything for me.
I had 6 days of monitoring & the preliminary report stated that the video could see the blank periods (what I think are abscence siezures) but eeg didnt pick anything up. The issue I also have is that I had what the nurses said was a seizure on Thursday night where my legs booth spasmed heaps but the rest of me was stiff. On Friday I woke up very vague, confused & felt like I had been run over. Everything ached & hurt. My legs were very painful & my arms ached & were weak, my mind was not thinking clearly either. This was noted on the preliminary report on discharge as "voluntary leg movements". how can they be voluntary when I am asleep?
Since then I have had several "absence siezures" - or what I presume are that. I lose time & when I come to I an usually very confused. This last week I probably had 3 of them, one was on the scooter & when I realised something was wrong was when I was sitting on the scooter & felt like all my body was shaking/vibrating & I was sitting stationary. When i checked my catheter bag was full & I had only empried it before I left physi. o about 30 mins before. I checked it becaus I know before I got the catheter I always wet myself when had what may have been one.
Yesterday I was getting ready for work & my back spasmed really badly & was so painful I sat down. Knoew I had about 10 mins before I neede to leave for work. Next time I looked at the clock it was 15 mins later so I had to empty my bag again (had only emptied it just before this happened), needless to say I only just caught my train in the morning as I allow extra time.
I have not had the one like others with legs but several of the "absence: kind".
It is getting more scary as they are happening more frequently & all sorts of timing & i have not been given anything to help.
How do I get my neurologist to listen to me & believe that I having them if nothing showed on eeg?
Any advice would be appreciated.
Thanks in advance
Many, many people with seizures have a negative EEG reading. If your doctor insists on a positive one before doing anything, GET A NEW DOC. It's a drag, but that way, at least someone will be doing something... Good luck! Dimmie
I hope he does give me a proper dx & treatment as he does think its that but no other eeg's have shown anything.
It is hard to swap neuro's as they need all the old details etc & yin a ou dont know if they are good or not before you go to them. I have been going to this neuro for over 10 years & he is thorough, takes a while before he will give firm dx though & cant get into in a hurry which is hard when sick.
I will sure be pushing on Thursday for answers as without the actual dx you cant get help.
Will let you know how I go.
It is Possible that the area where the seizures originate is just to deep in the brain for EEG detection. Only other explanations would be underlying causes &/or Pseudo-seizures. And you Can have Both. A Second, Third, Fourth Or More Opinions, May be needed. :( 2 is Definitely Recommended. :)
Love Candi
His answer now is that the spasms are part of ms, just mine are quite severe. As for the blank outs he is saying that my body is shutting down from fatigue.
Not happy with no help as nothing he will give me for it but cant o more with him.
I am seeing a different neuro on Friday & going to see what he says too. Not happy with being told I cant drive, shouldnt be using my scooter etc but nothing to ease the issues.