Epilepsy Forum - How to Help

That is terribly long time for a seizure. It is important for you to note the duration and time of each "phase" of the seizure. His doctor needs that information. For example, start time, stopped breathing, shook violently, attempted to start speaking, opened his eyes, etc...Write each down with the time.

I usually black out once it hits. Afterwards I wake but have very little control and can not speak for several minutes(a lot of slurring of words). Maybe that is what you mean. If he is shaking for more than 5 minutes then do call for an ambulance. If he stops breathing for more than one minute call an ambulance.

Your trying to catch him is very good. He sounds like he has someone who cares for him which is very important. Just knowing there is someone there is very comforting. He will realize your presence after he regains consciousness but doesn't have all his faculties. Someone held my hand as I was awakening from an attack. Although I could not move or speak when I came out I knew she was there and it helped me out mentally. I can remember her concerned face looking down at me and reassuring me to this day.

During the seizure make sure there is nothing sharp around his body or things like a glass which may break during the convulsions. I have heard of stories of people carrying a drinking glass when an attack hits. They drop the glass shattering it and then glass shards pose a very real danger. He can bruise himself so pushing a table away that his body is hitting or rolling him away from it if possible would help.

It is very important that you make sure you do not go anywhere near his mouth area at any point. He may stop breathing or you may think he is choking but do not think of clearing his mouth like in normal first aid. Do not use any items to try and clear the mouth area either. Instead rolling him onto his side is recommended.

After this, unfortunately that is about all you can do is observe while he is convulsing. It will be very helpful information for his doctor. If his meds are not working or if the doctor seems incompetent than find another one. I hope he finds a good one. Regardless, a second opinion is always recommended. Make sure he follows up and takes his meds (don't nag :) but a little reminding should be welcome). It's hard at first to get into the habit of dosing medicine at the proper time.

Two other things that may help him out.

The medicine I take, dilantin, was very ineffective if I do not get at least 8 hours of sleep a night. I used to vary my sleep patterns greatly but I don't any longer. If I don't sleep, I will get petite mal seizures which then warn me that a grand mal seizure is likely.

The second thing is that the generic form of the anti-convulsant drug may not be effective(at least with dilantin). Many other epileptics have found the same problem. His doctor will not be surprised in hearing this.

Insurance companies will frequently only allow the generic form of the drug when you do a co-pay. Insist on using the real thing at first and not a generic version even if you have to pay full price. See if that works before he gives up on the med and tries another. In order to have the insurance company pay for the "real" drug he may need a note from the doc. The doc may need to try the generic version on him first to see if it works prior to signing off. It may put him at risk for several weeks. Nice eh?

Treat him like a normal person. I had no symptoms until I was 28 years old. One day healthy, the next a diagnosed epileptic. No fun. You don't want to be different from the average person but the realization that you are can be very depressing/frustrating at first. Support is one of the best things he can have.

I am talking on and on here. Watch "the matrix" with him. You see epilepsy is actually--- the phone's ringing, gotta go. ;)

take care...