Hello, everyone

[ritag]

Just joined the group. My son Tom is 41 and not very well controlled on depakote but has tried all other meds & either they don't work at all or gets allergic or other reactions. His latest MRI shows he is losing brain volume and docs say it is caused by the depakote. Only thing available left to try is vimpat which he just started - we are hoping for less seizures & to start lowering the depakote. We are wondering if any of you have any experience with vimpat. So far he is having trouble keeping food down, sleeps a lot and gets extremely talkative and noisy at times. Hopefully, he will start to get used to it. Thanks for listening.

 

[Rae1889]

Hi there Ritag, and welcome to our humble home! You can find lots of information on this site, a place to chit-chat, vent and laugh. Bernard (our host) and Stacey (our hostess) made this site a truly safe and amazing place.

To respond to your post: Have you talked to the neurologist about adding medication, vitamins or supplements to halt or reverse the brain shrinkage?

What about trying a specialized diet to help with the control of seizures. joan, and RobinN are both very knowledgable in that department, as both their children are using a diet for control.

Have they ever told you what they think causes the seizures, as that may be a clue on how to fight back. Do you know any of his triggers?

 

[epileric]

Welcome

I used to be on depakene many years ago but never alone. They lessened my seizures but never really got things under control. I'm now on Tegretol by itself but like your son, the mediations help but don't really seem to do much more.

This site is great for learning about what alternatives there are out there & hearing who's tried them. http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

You might also want your son to keep a diary of when he has seizures as well as when he eats, sleeps, moves his bowels, his moods etc. It might make it easier to see what might be triggering his episodes.

Meanwhile take some time to check out the site & make yourself at home

 

[knothing]

Welcome to the site. I would also encourage him to use this site to help out.

As far as Vimpat goes I am on 400mg a day. I also take 3000mg Keppra per day. It took me a few months for some of the side effects to diminish or stop. I had some dizziness that was caused by Vimpat. I have other issues like small muscle tremors (not seizures) and being a bit hyper at times but some of that has to do with Keppra and the combination of the 2 drugs.
I have switched to a new Neurologist that specializes in Epilepsy and we are working together to find a way to reduce the side effects. Good news it has reduced seizures for me and they are at current time under control. Due to my medications side effects I have not had any caffeine in well over a year.

I hope this helps in some way. And around this site we have all listened and been listened to.

 

[ritag]

Rae1889

Hi, Rae - thank you for the welcome. The dr said there was nothing - vitamins, supplements, etc. that would stop the shrinking because it was caused by the depakote. We are continuing the vitamins/supplements his prior neuro had him on but we didn't know about the brain shrinkage at that time. Hmm, maybe I should call him & see if he'd recommend something from that angle. They also told me when I asked about diet that maybe an Atkins type diet might help but they didn't hold out much hope for that and didn't know where I could get information or a dietician. He has ideopathic epilepsy - starts both sides of the brain at once and immediately spreads throughout - no starting point so he's not a candidate for surgery. He never has an warning or aura but I have noticed when the barometric pressure changes he almost always has seizures. This is probably too long thanks so much for listening to me

 

[Nakamova]

Hi ritag, welcome!
You can search for threads on the site related to diet, including the MAD (Modified Atkins Diet), and others that might help. Even if your son's seizures can't be controlled by diet, it's possible that they could be reduced on frequency or scope, or that he could get by with a lower dose of med. These diets take time and persistence -- at least 3 to 6 months before the body has adjusted and you can get a sense of the overall benefits.
Another option to consider is neurofeedback.

You might also try having your son keep a seizure journal. You've said that barometric pressure seems to trigger your son's seizures. There may be other triggers (involving diet, sleep, metabolism, nutrition, etc.) that you can identify and potentially eliminate.

Best,
Nakamova

 

[BuckeyeFan]

:cheers:

A quick welcome to you Ritag. Your post was not too long. Look around and you will see some reeeaaallly long ones.

Hope to see you around. Sorry, I don't know much about Vimpat.

:cheers:

 

[ritag]

hello, everyone

Thanks for your encourgement everyone.

Epileric - am going to go thru your alternative list - I noted the VNS on the list - my son has had one VNS for several years - hasn't helped the seizures + now he has bladder problems everytime he has a seizure. I do keep a list of his seizures and anything unusual. And while on a new med do keep track of what he eats but will start keeping track of the other things you listed - very helpful info.

Knothing - it sounds like you are making good progress - how great for you. I hope it continues. Tom is on 50 mg 2xday. We are going really slow because of all the past med problems he's had and hoping it will help him so we can lower the depakote.

Nakamova - I will check the diet info on the thread. The main problem with diet is that he is so resistent to change, eating the same thing all the time. Talking to him about it doesn't help, he is stubborn about it and just gets really mad. Maybe I should hypnotize him so he likes everything (haha). He would rather not eat than eat something he doesn't know or doesn't like.

Buckeye Fan - Thanks for the welcome. We're originally from Michigan so I know where you are.

 

[Ruth]

Hi rtag,

Welcome to our wonderful forum. It was made out of love by Bernard for his wife Stacy.

I have never heard of the brain shrinking from depakote. I was on it in 1979. Google depakote and see what you can find. I would try to get another opinion from another neurologist.

I take cranberries for my bladder problems. That works for me. I do not buy the bottled cranberry juice, because it has to much sugar.

Ruth

 

[ritag]

hello, everyone

Thanks, Ruth. I had never heard of depakote causing brain shrinkage either and Tom has been on it for many years and has had at least 3-4 neuros in that time. Thanks - at your suggestion I did google depakote and brain shrinkage - some sites came up but none had anything referring to both together. RE a 2nd opinion, Tom just started in May with this neuro at Barrows Neurological in Phoenix which is supposed to be an excellent neurological facility and the best in town. His last neuro referred him there as he felt he had done all he could for Tom and was hoping a facility like this would be able to help him. He had his 2nd appt in mid-Oct which was when we got the results of EEG & MRI and the vimpat. He goes back in Feb for his 3rd appt. The appts seem far apart to me when compared to the last neuro but maybe its the mommy in me.

 

[Ruth]

Hi ritag, glad I was able to help you. Sounds like this new facility will help him more. Do not worry about the appointments being far apart. It is better to be far apart than to be close together with a doctor who cannot help Tom.

Keep us posted.

 

[ritag]

hello, everyone

Thanks, Ruth, you are right about the appointments.

 

[Meetz1064]

Hi, hello

and how do you do, Ritag? Don't ask me how I missed saying hi to you before this, but.......I did. Sorry about that.

First off, welcome to CWE. You'll find plenty of information here in the Library and Kitchen, and lots of friends, too.

Nakamova mentioned an E journal, and it may really help you. I am going to list what I generally put in an E journal and suggest to others to do so. You may also want to add the things about barometric pressure, since that seems to be a trigger for your son. So, here goes:

*********************

1. Sleep. List how much & when.

2. Eating. List how much, when & what. It's possible to have seizures caused by allergies to food.

3. TV/computer/video games. Yup, they can affect you if you're photosensitive, so list when, what, and HOW LONG.

4. Menses (for women). Start tracking your cycles. CATAMENIAL epilepsy does exist, sometimes it's tied to ovulation, sometimes its right at the TOM. Also, LADIES, DO get a thorough check of ALL your hormones done—female, thyroid, and any others. Believe it or not, they do factor in on seizures.

5. Stress List when it occurred, and what happened.

6. Exercise List what you did, when, and any reactions.

7. Seizures/auras. If you have either, DOCUMENT THEM. Auras--note what they're like--do you smell or taste something that others don't? Hear something? Seizures--how long, when, where, what happened. If you don't KNOW what happened, get eyewitness accounts when possible and DOCUMENT THEM. ****side note**** Auras ARE partial seizures!!!

8. Smoking and alcohol. Ditch them--both are neurotoxins for our brains.

9. Meds (of ANY kind). List the dosages, and when taken.

******************

Responses To The Above List


1. You MUST get 7 to 7.5 hours of sleep as a MINIMUM, no ifs, ands or buts about it.

2. Eating--one of the other mods, Skillefer, (we call her Skilly), promotes eating 6 small meals a day, using a dessert plate, filling it with a carb and a protein. Good idea, I think. However, some people, like me are allergic to certain foods. You might want to look into various diets. Ketogenic, Modified Atkins, Low Glycemix Index, Gluten Free Casein Free (see www.dogtorj.com where the actual given name is GARD—it stands for Gut Absorption Recovery Diet).

3. Look into a glare screen for your computer or blue tinted polarized GLASSES (available by prescription from eye doctor). These can help cut down on seizures that are caused by photosensitive epilepsy.

4. GUYS--you may not have a cycle, but you DO have hormones. DO get your doc to do a full hormone screen, check thyroid, etc, just to make sure.

5. Use things like yoga, music, walking, whatever it is that you do to bust out your stress. Keep a separate journal to write in so that you can write out your feelings in--and keep it for your eyes only. Write it out by hand, two or three pages at a time. It helps A LOT. DO IT EVERY DAY.

6. REFLEX E can be caused by exercise, so DO track what you do. Keep in mind that you SHOULD NOT swim, bike, hike or bungee jump by yourself. Same goes for mountain climbing.

7, 8 & 9. 'Nuff said.

OK, the journal IS a pain in the arse. No doubt about that one. BUT it DOES help the doctors track things down.

*****************

I know this is a bit of overload, but you may want to seriously consider it.

Hope it helps, and take care!

Meetz
:rock:

 

[ritag]

hello, everyone

Thanks so much, Meetz – what a lot of great ideas. I have always tracked his seizures and noted anything I felt relevant but until everyone’s comments on this site never thought about tracking all the other daily activities and you have included even more helpful detail. I especially like your idea about a “his eyes only journal” and want to encourage him to do that besides a daily one we both contribute to. His hands shake but he can write and it may give him a measure of feeling in control if he can express his feelings. Thanks, again, Meetz, I do appreciate you (and the other friendly people here) and thanks for taking time to be explicit on the items.
ritag

 

[Ruth]

His hands shake but he can write and it may give him a measure of feeling in control if he can express his feelings.

My hands shake sometimes. My neurologist calls it "tremors." I am on Mysoline for it. It works for me. You should tell the neurologist about it.

 

[Meetz1064]

*blushing*

you're very welcome, ritag!!