rookie poster

[climbergirl]

Hi everyone. I am new to this forum. I had my first seizure in 2010 at 45 years old. I saw that awhile back there was a thread about maintaining a low carb diet and also running. Wondering if anyone else is completely confused about the number of carbs suggested on a regular low carb diet and carbs needed for exercise. Also wondering if I should go easy on fruit because of the sugar. would appreciate any help. I need to go off the Depakote because of the dangers. I am scared to do this so I am looking into any alternative that will help. Thanks!

 

[Porkette]

Hi climbergirl,

Welcome to CWE! Everyone here is very helpful and even though I've had E. for 45 yrs. I've learned a lot from others here. I've been on the low carb diet, the diet is low in carbs and starch foods and high in fat it's called the Ketogenic diet and it's been out since 1927. You have to cut back on the carbs and starch foods and eat foods high in fat. When I was on the diet I had to eat 4 grams of fat for every gram of protein this in turn causes ketones to build up in a persons body which will help stop or reduce the seizures.
When I was on the diet I was also taking Depakene (the brand name for Depakote) and I lost 70 lbs. in 4 months so I had to stop the diet. If you want to get more detail about the diet you can buy the book title "The Epilepsy Diet Treatment" by Dr. John Freeman from John Hopkins Hospital. You could also make an appt. with a dietician who can explain the diet to you and get you on it if you are interested. I have found that walking at least 2 miles each day has been a help to me when it comes to exercise but I should do more especially since I'm getting older. In regards to eating fruit my Dr. told me to stay away from grapefruit because the enzymes in the fruit will mess up my seizure med but as long as you are eating natural fruit and not adding extra sugar I see no problems. Be sure to stay away from anything with NutraSweet (aspartame) like diet soda that has been proven to cause more electrical activity in the brain and for some people it can trigger seizures. I found that out the hard way when I started drinking diet soda and then I had a lot more seizures. When I told my Epileptologist I was having more seizures he asked me what I was eating and drinking and it was then I found out I shouldn't be using nutra sweet or any sugars like them. Wishing you the best of luck and May God Bless You!

Sue

 

[Nakamova]

Hi climbergirl, welcome!

I recommend that you consult with a registered dietician or nutritionist. A specialist can look at your particularly dietary needs and exercise regimen and make recommendations about what changes might help you achieve your goals. The specialist should be familiar with epilepsy and/or can consult with your neurologist. And you should be able to check in at regular intervals to make any modifications to the diet as needed.

Many diets can take several months to show results, so you should be very careful about withdrawing from the Depakote while implementing a new diet at the same time. Can you start the diet before tapering off the med?

Best,
Nakamova

 

[climbergirl]

Thank you both for your advice. I am slowly tapering off the Depakote-down to 500mg per day. I am feeling better since my seizure in May. I still have trouble remembering some events from the past and don't always recognize people I should know but overall am getting better. When I first started running again I would do short laps around my immediate neighborhood because I was afraid of getting lost.

It is good to know I can still eat fruit. For awhile before my big seizure I was not able to eat white breads and pasta. maybe my body's way of letting me know.

I am so glad I found this forum. It is hard to talk about E with anyone who has not been through it. Quite a few people have avoided me since then but my very loved ones have stood by me.
Thanks again1

 

[acshuman]

! ! ! ! WELCOME TO CWE climbergirl ! ! ! !

You will find many members of CWE who will want to help you in any way they can! There are MANY years of experience in dealing with the many aspects of E that come with these members. :twocents:
I have never had to stop taking a medication because it was causing problems for me so I can't tell you what you should do. I took Depekene/Depekote for 39 years until I was switched to Keppra.
I think you have seen that you can ask any question that you may need an answer to.
I have had E for 50+ years and still learn new things every day from the many members of CWE just by reading the new postings and their responses. Many of the postings are questions that I had never thought of, so I am learning something that I had never even thought about.
FEEL AT HOME ON CWE! You are now a part of CWEs worldwide family! :clap:

acshuman

 

[Porkette]

Hi climbergirl,

The reason you may not have been able to eat white bread and pasta is because both of them are starch foods which turn into sugar and in turn can trigger seizures
for some people. My Dr. told me one of the worst things for me to eat was pasta and that I should stay away from that and NutraSweet. Wishing you only the best
and May God Bless You!

Sue

 

[climbergirl]

My doctor put me on Keppra last year. I could not do anything because I was incredibly exhausted. It was very difficult to just get through work. There was a Saturday when I couldn't even get out of bed. It was supposed to be a go out for coffee day with my daughter but I could not even do that.

What about sugar alcohols? When I am out hiking or climbing all day I will take a protein bar with me. Some have no sugars but will have sugar alcohols.

 

[acshuman]

I Know I Have Been Lucky!

climbergirl,
I say this about myself because I have never had any kind of negative side-effect from any of the AEDs I have taken throughout the 50+ years I have taken them!
I have been taking Levetiracetam(generic Keppra) at the rate of 1500mg(am) and 1000mg(pm) for over 11 year now and have not felt too tired to get out of bed.
This shows you how different each person is when it comes to how an AED will affect their body and mind!

acshuman