Friend recently diagnosed with epilepsy - help please

A close friend of mine has struggled with epilepsy since childhood. Some of her medications have caused weight gain. others haven't. Frankly I think that the small amount of weight gain one of her medications led to caused her to throw her hands in the air and blame it ALL on that, and now she leads a pretty unhealthy lifestyle all around.

She should talk to her doctor about the side effects of her medications (instead of trolling internet forums for suspect advice, mine own included) and her concerns. If she can identify and avoid her triggers, she may require lower doses (steam is a big trigger for my friend, oddly). If she continues to exercise and eat appropriately, she should be able to compensate for most of it. And in the end a little weight gain is far less horrible than avoiding activities you love for fear of having a seizure.... or worse, having one while doing those activities and injuring yourself and/or someone else.

The Keto diet was originally designed for people with epilepsy. Look into it and talk to the doctor about it before starting it.

I also suggest your friend looks at a keto diet, used widely for kids with epilepsy and wish her well.

i would be more concerned with how the medication will affect her mood rather than her weight.

although i can't name the medication(s) my sister is on, she gained quite a bit of weight. but i think it has to do more with the fact that with her condition, she doesn;t work and sits at home all day and refuses to eat well. on top of that, a once bubbly and consistently happy woman has turned into a complete downer. her mood draining any happiness from those she talks to.

my fiance was recently diagnosed with epilepsy, and his medication hasn't affected his weight but recently he has developed sever anger issues along with depression. we're going to talk to his doctor soon about switching medications to something that might help the mood. i would rather him gain 50 pounds and be mentally stable.

as someone who has experienced many seizures in my lifetime and know what damage they can do if left untreated, i suggest she focus more on how the medications help her and/or affect her personality more than her weight.

Hi,

From my experience I can tell you a couple things in terms of weight goes.
1. Topamax makes you drastically lose weight (in a bad way; like 20 pds in a month). It also makes you not be able to think; there is a reason some refer to it as "dope-amax". Poor quality of life. Then when you change meds you will just gain the weight back and possibly more.
2. Going on Depakote will cause your metabolism to slow down which can cause weight gain. It can also increase your appetite. For me though, it was worth it. Having my seizures controlled with no other symptoms besides about 30 pds of weight gain after going through 4 or so medicines was worth it. I have taken it for 10 years b/c it worked tremendously well. I have only now came off it b/c I want to have kids. I will say that while you are on it, it is about 2x as hard to get off the weight.
3. I am on keppra now with very few side effects. It is the most safe. I can say b/c I am coming off depakote and onto keppra I have lost weight b/c my appetite & how I eat is changing (but I assume that is from going off the depakote).

One of the hardest part is the medication changes to find something that works w/minimal and manageable side effects. Going through the process can be emotionally and physically draining. I was diagnosed at 16 yo and am now 30. One thing that has helped me the most are support groups on the internet, b/c it is hard to find ppl whom you can relate with. epilepsyfoundation.org is a great site. There are also some groups on facebook. There may even be a local support group, some major cities have them. I am lucky to have such a wonderful, supportive family & husband. It can be hard for a lot of people to understand so that is really important.

I wish your friend the best of luck!

Becca

I am on Lamictal and haven't had a problem w/ my weight. I didn't gain weight b/c of the meds, but b/c of my eating habits.

Epilepsy is a new condition for me. My1st seizure happened after a D&C for a miscarriage in 2008. I have only had a few since then, all of them my fault for not taking my meds on schedule(high risk pregnancy & new mommy sleeplessness fog).

I would love to find some friends for support.

Dearest Kate,

I was diagnosed with epilepsy as a 4 year old child. I was on 60 mcg or mg, can't recall....of phenobarbitol. I had no weight issues related to my medication, and was on it through my late teens and early twenties. I hope this will help your friend. Best of luck!

Janine Alfke

Aside from the ketogenic diet, doctors are now introducing a "Modified Atkins Diet for Seizures" for adults as ketogenic has primarily been used for adolescents (I believe - please correct me if I am wrong). It is similar to ketogenic but not as strict (but still strict). I have high cholesterol (triglycerides) unfortunately so the "diet" wouldn't be good for me b/c it is high fat/protein and low/no carb. I can't have the bacon/eggs/cream etc. It is said that ppl do lose weight on it too. Just have to remember to work all "plans" (not diets!) like this with your doctors. I don't like to refer to this thing as a diet b/c it is really about getting your seizures in check first.

My 16 year old daughter was just formally diagnosed mid April, and started Trileptil. She's actually lost weight.

Different epilepsy meds have different side effects. The most important thing, is to eat a balanced diet and get the seizures under control. My daughter is counting down the days until she can drive again. (6 months seizure free)