Epilepsy Information

ComplexPartialGrl · Sep 30, 2006

Hi Suzy,

If I'm not way too late you can e-mail me if you want. I have Epilepsy & have for some time. Here are the answers to your questions.

Hugs,

Rosie

1. When were you first diagnosed? At 9 mos. of age

2. What were your signs and symptoms. spacey staring, fumbling of hands, shaking, tired alot.

3. What types of diagnostic tests did they perform to diagnose you? EEG, MRI, CAT scan (kinda sketchy)

4. What types of medications and treatments have you tried for your disease? Everything short of surgery & diet

5. How has this disease affected your life? Let's just say it's been a trip!

6. How have you learned to live with your disease? You really have no choice. I know no other life, really.

I hope that helps & isn't too, too late. I'm here if you have more questions.

sharlynn · Oct 8, 2006

My neurosurgeon uses seizure disorder rather than epilepsy due to ththe stigma attached.

1. Age 33 after an ear infection.

2. Seizures. My aura is a funny metallic taste and a sort of ringing in my right ear.

3. EEg's on three consecutive days, Mri's and CT scans.

4. Dilantin, Dilantin and Phenobarb, two craniotomies and now just Phenobarb

5. I try to keep regualr sleep and medication hours. I wear a Medic Alert Bracelet (everyone assumes I am diabetic). Depending on the state you live in, you may not be allowed to drive until you have been seizure free for a specified number of years.

6. I had to learn not to panic with every little headache. I agrre you have no other choice!

You can also e-mail me if you have other questions.

clyen · Jan 2, 2007

Hello,
I am a first year nursing student and we are doing empathy projects. I was assigned to research Epilepsy. Part of the assignment is interviewing an individual with Epilepsy. So, if anyone knows an individual with Epilepsy who would be willing to answer a few questions, I would greatly appreciate it!! The interview consists of these questions:
1. When were you first diagnosed?
2. What were your signs and symptoms.
3. What types of diagnostic tests did they perform to diagnose you?
4. What types of medications and treatments have you tried for your disease?
5. How has this disease affected your life?
6. How have you learned to live with your disease?
If anyone could help me out that would be great. Thanks!!!

I can give you some information as I too have been diagnosed with epilepsy.

When were you first diagnosed? At 18 months

What were your signs and symptoms. Staring straight ahead, left side of my body jerking

What types of diagnostic tests did they perform to diagnose you? EEG, CT

What types of medications and treatments have you tried for your disease? Phenobarbital, which currently I'm still taking and works - during my teen years tegretol & phenobarbital with no solution. Had a right temporal lobe tumor resected. Uncertain if that 'cured' the epilepsy or not, so pheno is left alone to make sure I don't have any breakthroughs - it's only 150mg qhs.

How has this disease affected your life? During my teen years when meds weren't working, I found myself conscious for seizures, which was an unpleasant experience since I could hear my classmates make fun of me having a seizure, while I was paralyzed until the seizure was through. The surgery at 15 happened when I was starting a new school, and my sophomore year of high school. More ridicule from classmates. Since, no problems really since all has been going well thus far.

How have you learned to live with your disease? Simply by making sure I don't open myself to things (if I can help it) that could drop a seizure threshhold (spelling is horrible tonight, sorry) such as lack of sleep. I try to get no less than 6 hours - if I do, I try to be cautious. While I may never suffer another seizure, there is always that possibility that I may. Also, since I grew up taking medication, it just became a way of life for me. It is such an integral part of my routine (taking my meds) that I really don't have to think about making any adaptions. I don't drink liquor since, as a doctor told me when I was a child, "Phenobarbital + alcohol = death or coma." While that may have been a bit of an exaggeration, I'm not pressing my luck. I'll be the designated driver and get the blackmail pictures:lol2: .

Another great place to find information is Epilepsy Foundation-Not Another Moment Lost to Seizures. Any speeches, etc I had to give in college or high school usually had to do with educating others about epilepsy since there is myth and misinformation out there. If you have any other questions, let me know. I hope I've helped a little bit.