Ideas Please

[cbro1960]

My girlfriend, 32, is on Topamax and Keppra, as well as hydrocodone for migrains. She has had an increasing number of seizures in the last year. We recently did 4 days in hospital for Telemetry bed to no avail. Pharmacy in hospital did an analysis and recommended Dr. look at other seizure meds like Depakote etc. The Neurologist looked at the recommendation for about 30 seconds and said nothing. Now we are waiting on referral to Shands in Gainesville, Fl. for more telemetry. She has only been able to work about two weeks total since January and took FMLA in February. Stress is a major contributor as her short term memory is shot and cognitive test wasn't very good either. Just looking for advice or maybe do's and don'ts in the medical community.

[cbro1960]

Two things the Neuro at Shands Hospital keyed on was complete removal of Aspartame and replentishment of liquids and lost nutrients. Potassium and B12 being to of the easiest to lose. Water and fruit juices, etc. Going back fro 3-5 day Telemetry and complete daily diary for wake up, meds, food, naps, etc.

[Nicole1111]

It is tough to kick the diet soda addiction, but there are other options.  Adding Stevia (a 0 carb sugar substitute) to Kool-Aid instead of sugar works, and I seem to be able to drink things sweetened with Splenda just fine.  Diet Rite and some other pops use Splenda, though this is still a trigger for some people.  I think I'm lucky in that respect.

As for the gum, that'd probably be something you'd just  have  to kick :)  And regular yogurt shouldn't bee too much of a sugar rush for diabetics, though I am not one so I could be wrong there.  

It was literally night and day for me, so why not give it a week and see if you see a difference.  If not you can go back to your  old ways :)  Just last weekend I was at the lake and only had Diet Coke to drink, so I had 4 cans in 3 days and had a big old migraine the next day!

Nicole

[Sisteranita3]

I have both Diabetes and Epilepsy and thankfully not had a seizure in years.  Additionally I suffer TIA's and a myriad of other ailments.  My question to you is how would you think that a Diabetic could eliminate all aspartame from their diet?  After being diagnosed with Diabetes I have become addicted to the Diet Soda, Light Yogurt, sugarless gum, etc.  I am new to this (Epilepsy) forum and had never considered that this could aid in the occurance of seizures.  When reading your comment I thought about the fact that I do suffer some memory loss.  I have to endure the grand mal seizures and take both Depakote & Phenobarbital.  My license has been revoked (Thank God) once my seizures began to occur while awake.  I also have many other ailments. (Edema, Sinusitis, Hernia, Obesity, on and on)  Any thoughts that you or really anyone might have on the subject would be good to know.  Thanks!

Anita

[Gones]

For the last 3 years, our lives have been through a bitter struggle. Watching our 13 year old daughter having grandmal seizures is very taxing.  They (grandmals) take a huge toll.  I'm convinced that there is another way  to overcome this.  By the  grace of God. Our daughter now 16,had about 4-5 grandmals in one day.  We were vegetarians and modified that to a vegan diet, no meat, dairy, cheese and no processed foods.  and tried some anti-spasmodic herbs.  She has about 6 grand mals a year (and that's when she makes wrong choices) We have never given her any medication for this disorder.  Of course, the Doctors are not at all convinced that lifestyle can help. It's all about medicine.   I'm still researching how to improve this disorder.  And with her, she already has a brain malformation.  I can just imagine how magnificently diet reform, exercise, prayer, LOTS of water, sunshine, the right use of herbs...would work for someone with a normal MRI but has seizures.

Just a thought.....Take care now
Gones

[cbro1960]

Have all but eliminated aspartame from diet. Seems like it's everywhere. She's had 6 known seizures in last 9 days. We're schedule to go to Shands in Gainesville Fl a week from Friday. Local Drs don't want to alter anything til we go. Makes it rough to deal with. Her spirit is mostly broken. She feels like no one realizes how hard these things are on her body. It takes on average, 3 days to recover, and some longer. Come on 08.08.08.  

[Nicole1111]

One more suggestion:  Eliminate all aspartame from her diet.  This got rid of both my migraines and seizures, which is wierd because I've been drinking diet soda for years with no problems.  Since eliminating aspartame (in diet soda, "light" yogurt, sugarless gum, etc.), my short term memory is improved an amazing amount.  I'd never go back!  It's an easy thing, and worth a shot - it doesn't work for everyone, but why not try?

[cbro1960]

Thanks,
Both sites had great info. Looking into Epilepologist now.

[lovies]

I have a GREAT suggestion...actually two....one is to find and see an Epileptologist not just a neuro. two is epilepsy.com they have a world of information!!

http://www.epilepsy.com/  

Here is another good one

http://www.uchospitals.edu/online-library/content=P00779

[cbro1960]

The above seizures are Grandmal. Sorry.