INFO FOR STACY

[HELP4U]

I have some non-MD advice, based on lot of personal experience.
Epilepsy studies have shown that:
1. The primary cause of siezures is failure to take meds.
2. The second most frequent cause of lack of sleep.
3. A varity of other causes, whcih vary from person to person, will bring them on, e.g., consumption of alcohol, stress - emotional, physical, pschyological, etc., too much blood sugar, too little blood sugar, LOW SODIUM in the blood (and, to a lesser degree low potasium), excessive caffeine which causes spikes in blood sugar,taking other drugs - whether controlled (illegal) substances, OTC's, etc.
4. Possibly periodic hormonal changes in women.
5. Some or ALL of the above plus some others I have forgotten.

After28 years of having intermittent grand mal seizures and being on numerous and only partially effective different drugs, it appears that I am presently on a combination of meds which has finally nailed down my seizures - MOST OF THE TIME. (In my case, the cause seems to have been precipitated by a head injury and also having a "Type A" personality:STRESS is my biggest trigger.

COMMENTS:
Epilepsy is a chronic, incurable, ideopathic, generally non-life threatening illness. This means that:
1. YOU WILL ALWAYS HAVE IT.
2. Various treatments work for various people, but between seizures for 70% - 80% can be reduced/eliminated with the help of meds. (Trying to eliminate by meditation won't hurt, but I haven't come across people who do nothing else about it.
3. Watch your blood chemistry (e.g., anti-epileptic drug levels, sodium levels, electrolytes, etc.). To do this you need a good internist with periodic check ups (about every 3 months? ASK the internist and the neurologist).

SUGGESTIONS:
1. Go to an Epilepsy Clinic at a MAJOR HOSPITAL near your home. (There are a number of them throughout the country and any neurologist can give you his/her recommendations.) You will get a much better diagnosis/prognosis/plan of attack than a single doc will give to you since they can provide a tean of specialists who work on nothing by epilepsy, unlike the average neurologist who has to deal with strokes, MS, Lou Gherig's disease, neurologist damage resulting from accidents, etc.

2. Get a good neurologist and internist and stick to those docs if satisfied. (Don't be afraid to try more than one.)

3. NEVER SKIP MEDS: dilantin is a mild, maintenance medication.

4. Get at least 7 - 8 hours of solid sleep per night; if your husband has to get up several times per night to take care of children, that's another part of his marriage vows.

5. Avoid stress.

6. Do you drive? There are laws governing this in each state which vary from state to state. If your neurologist tells you not to drive, follow his/her advice.

7. Study as much as you can about epilepsy on the internet: much of what's on the net is written by those who have the issue and is easily understandable.

8. Just because you don't have seizures, it doesn't mean that you are cured of epilepsy. It may be that a combination of things has to occur to set off a seizure.

9. TAKE CHARGE OF YOUR DISEASE BEFORE IT TAKES CHARGE OF YOU.

10. Remember: There are lots of people just like you who will want to help and may have the ability and interest in doing so.

11. Smile: you've awakened today - again - and are going to have a good day which will be seizure free because you are taking care of yourself. This will make you feel better (and possibly less prone to a seizure?).

I know this was a long note but it's based on almost 30 years of experience with a disease that has become a central issue in my life.
I refuse to let it take any more of my life away and it would give me enormous pleasure to help you.
Hope this helps

[Bernard]

Hi Help4U, thanks for the nice post. I'll try to bug Stacy into checking into the forum soon.