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I need your help

I am a student at the Medical University of South Carolina, and have been living with epilepsy since I was eight. I decided to make epilepsy a focus of a study, and hopefully I can use the members of this forum as my sample. This means I need as many responses as I can get! There is, unfortunately, no reward, but all you need to do is answer a few questions. When I'm done, I'll post the results. Hopefully it will be useful to everyone as a collection of opinions from people on this website, who not only live with epilepsy but share with each other their experiences and support each other in a way that people without epilepsy can not. If you do not wish to respond publicly to these questions, you can email them to me at donohuee@musc.edu. Thank you! Evan 1. What is your username? 2. How old are you and how long have you been living with epilepsy? 3. How has epilepsy impacted your life? 4. In which ways have you been treated? (This implies meds, surgery, VNS, diet, etc.) 5. Explain the effectiveness as well as adverse reactions of each treatment method, including each medication. 6. Choose the best and worse treatment option, in terms of seizure control and side effects, you have experienced, and include why. Thanks again!

Comments

Re: I need your help

1. scottR
2.
a. 36 years old
b. 23 years total
3.
a. seizures
b. headaches
c. difficulties in career advancement
d. forced to get more sleep which takes away from family time and
time to get things accomplished outside of work
e. the financial expense of testing and medications.
f. The possibility of surgery and the time I will have to take off
work to properly recover.
g. Transportation difficulties and the strain that it puts on my
entire family
4. at this time my only course of treatment has been threw medication
however if all goes well I will probably have surgery in January
5.
a. The medication has been fairly effective over time however the
older I get the more the dosage slowly increases.
b. The only real adverse reaction that I can tell you about at this
time is the fact that the medication does make you drowsy.
6. The only treatment option I have tried at this point in time is
medication.

Good luck with your study. I hope this helps.

Sincerely; Scott Rogers.

Re: Re: I need your help

Scott, thank you so much. I hope everything goes well for you and I'll post my results in about a month. Thanks again, Evan

Re: I need your help

Thanks everyone who has helped so far! I need a lot more participation to come up with anything definitive. Thanks again!

Re: Re: I need your help

1. rbg78

2. 28, diagnosed one year ago.

3. seizures, headaches. According to my neuro, Im too much of a Type A personality, always planning, perfectionist, goal-oriented, so the E made me quite depressed because some of my plans have to be put on hold. I also hate that I have no control over my brain!

4. Meds for now. On my fourth one now, seems to be getting worse, may be related to period cycle, have to check my diary again to confirm. Considering surgery, but just cant find time!

5. First med, Topamax reduced seizures from 3/week to 1/month. But it made me too drowsy and mentally slow, so been trying others. Drowsiness is a common side-effect of all. The trileptal and epitec were not too effective, caused skin rashes so I had to stop. Now on Keppra 2000mg. It causes mood swings and depression, so I do alot of stuff that improves my mood, like exercising and sex releases endorphins which make me feel better.
I cut out carbs from my diet, but not on a strict diet for treatment.

6. Only been treated with meds. Considering surgery, cos Im getting scared now that so many at such high doses are not working. Dad was epileptic too and died during a seizure.....he also had late-onset E, like me........ok, ok...time for happy thoughts!

Hope this helps you.

Re: I need your help

1. moemoe
2. 12 had epilepsy 10 years diagnosis changed from absence e to JME, to refactory generlized e with t/c 3 to 5 times a week, myoclonic 15 a day and 20 or so absence seizure
3. it has impacted my life very much. I can not drive, was denied the last three jobs I got because of failing the physical and am soley reliable on family and friends. Where I thought I would be in life I am not because of epilepsy. Many friends have moved on I am depressed, have a horrible memory, blurred vision, most nights go to bed at 9:00pm.
4. I have been on many medications, the ketogenic diet and am deciding on split brain surgery on sept 10
5. the best combo was lamictal and topamax when i was 15 to 20. but then the neuro started changing meds and i went back to lamictal and he increased it really fast and i developed steven johnson syndrome. (They took my picture for a journal article!)
6. It would take a really long time to write all the drugs and drug combos I have been on an how they didn't work so I will just list all the drugs I can remember I have been on in no order- zarontin, celontin, keppra, lamictal, depakote 3 times, neurontin, tegretal. Right know I am on dilantin (for the second time), topamax, zonegram, klonopin, and ativan.
the depakote had the worst side effects- vomiting, nausea, bloody diarreah. topamax has the worst cognitive effects with memory and concentration. I feel really tired on the cocktail i am so hopefully i will come off the topamax. the dilantin gives me hand tremors, unbalance and blurred vision.
if you need anything else just ask. god luck, moe mm230893@yahoo.com

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