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View Full Version : Epileptologist and an update


sekharp
12-12-2002, 01:56 PM
Well, I had a 48-hour EEG performed. That was normal. The night after the electrodes came off, I had a partial seizure where I was slapping myself in the forehead. Then I was quite sleepy and went down for some time. I woke up about 1:45 a.m. and realized I hadn't taken my Dilantin. I took it and went back to sleep. I woke up sometime later very sore all over, but for no reason. The nurse and another neurologist were sure I had a major generalized seizure and told me to go to the emergency room to have my blood level checked. It was low (4.5) so they gave me IV fosphenytoin sodium and told me to up my dose. Now, my neurologist signed off on the increase before telling me about the normal EEG. He said that if it's helping, I can stay on it for a while. He wants me to see an epileptologist in the big city near here, and that it's his best guess they are not seizures. However, he said the ER could neither prove nor disprove the generalized seizure since I live alone. What does that entail? Do any of you have any experience in dealing with this type of physician? I can't drive right now, on the advice of my employer's physician. So everything is being affected. I also wake up with unexplained bruising. Any ideas? Thanks. My Dilatin is now at 500 mg per night.

kayakmom
12-13-2002, 09:14 AM
Yes and epileptologist can be a great way to go. They have additional training in epilepsy and treat only that. A neuro can treat any neurological problem. If this one does not know what is going on it would be best to get more help. Odd that he thinks you had a big generalized seizure then says he does not think so.(Psuedo seizures would not happen in sleep!) THe bruising could be seizing in sleep and hitting something. I would also ask when your last CBC blood test was. Is Hematocrit normal, everything else normal? If the blood work is off it could explain the bruising and needs to get checked out. Does this neuro know about the bruising?
Good luck I hope you find answers at the Epi doc. Do you have a local Epilepsy FOundation affiliate? Sometimes they can help find transport.

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Son, 11 with Epilepsy

sekharp
12-13-2002, 12:34 PM
No, I just noticed the bruising yesterday morning. I didn't tell him. I just talked to the epileptologist's office and it sounds like most often, they run a battery of in-depth tests. So that might be good to get a final answer. As far as I know, the last blood tests I had came back normal. I know my potassium is low. However, I heard that Dilantin robs your body of that anyway. So we will see. I know that I haven't had any seizures during the daylight hours since they upped my Dilantin to 500 mg. That is good. Have you or anyone else you know had generalized seizures at night like this? I know there was another post on this board about that, but what has been the experience? Thanks.

kayakmom
12-13-2002, 02:09 PM
Yes, You can have generalized seizures in sleep, as well as partials and Tonic Clonics in sleep. My son has had both generalized with convulsing and partials with no convulsing in his sleep. (the latter we can tell by how he feels when he wakes up)
Hope all the testing will give you answers, good luck. I have heard of so many who seized right after the VEEG. My son is off meds for a time after VEEG, where he showed abnormality, a tonic hand movement but no other seizures. THey expected to get him right back in. He has about the same number now as when he was on meds. SOme are less sever now. We will redo VEEG, but they want more seizures coming regularly. He has between 2-6 a month now, we never know when they will hit.