Only I Know – Susan

Only I Know – Susan

At 12, I was admitted to the hospital for a surgical procedure on my arm. A month later, I was admitted for a sleep study to find out why I was suddenly having seizures. Partial seizures- staring off away from people, breathing faster and fidgety. 10-12 seconds but rather frequently and never losing consciousness.

It was as discovered that one of the brain waves used when is sleep was slightly irregular and this was causing my issue. YAY. The cause… now, the chore of finding the right drug and the correct dose. Trial and error Les ya to Dilantin and Phenobarbital. The problem with these drugs, nothing was extended release and no one explained to me the 12 year old that you shouldn’t drink on these drugs or you needed to be diligent about taking the drugs and never run out.

Teens my age experimented with alcohol and I found out that although I liked the buzz – alcohol really makes me rather ill. Now that I’m 55, I understand that “a” glass of wine is fine but 3-4, not so fine.

Teens are also not so responsible with meds. Like the time I ran out on a holiday weekend and didn’t tell my mother. I had a grand-mal seizure and of course had to tell my mother. But, I think I bit through my tongue on that one. Not very smart, but it taught me a huge lesson!

Getting my drivers license was a challenge because the state of MD made me wait a certain amount of time so I couldn’t get my license until I was 17. That wasn’t so bad.

I’ve seen my doctor regularly and been tested regularly to ensure that my meds are at the appropriate levels, but I still have occasional “auras”. Not full partial seizures just auras. They are aggravating and don’t last long but they are there.

I was placed on Lamictal when I wanted to get pregnant and that works pretty well for me. I was pregnant 3 times and delivered 2 healthy babies full term with no issues. I was able to breastfeed both of my kiddos for many months (17 and 22 months). Once I decided that I didn’t want more children, I switched to different meds again. Onto, Tegretol XR and Topamax. These work fairly well together.

The only time I have auras is when I’m on the verge of falling asleep. Then, the aura wakes me and I’m just mad. Mad that my sleep was interrupted. I’m also a bit embarrassed because my husband knows but has never realized that I’ve had a seizure and all I can think is “oh dear God, please I hope that didn’t wake him”.

I know he would understand and he would be worried. But – I just want to sleep. At this time in my life, this is a pain when I’m woken up. My kids know I have epilepsy and take meds. Like my husband- that’s all they know. None of them have seen or experienced what happens to me.

I don’t know anyone that has “auras” just at night that wake them up and they are the only one that really knows or understands their problem. It’s a rather lonely issue that certainly makes it feel like – only I know….