hi i'm new and need help

[Sandy87]

hi everyone im sandra and my mum has had epilepsy since she was 19. She is now 50 and it's just getting worse. She takes tegretol retard, lamictal and frisium in quite high doses. Doctors have chopped and changed her medications a lot but she's been on the same doses now for a while. She takes tonic clonic seizures which begin as secondary generalised and normally fits 2-3 times a week and has had some very serious accidents and injuries as a result. A few years ago she started taking some sort of fit which was totally different to her norm. She was totally conscious but it was as though she lost total control of her limbs and her legs and arms were flinging about with no control. Her head flung about too and her jaw was opening and closing approximately 200 times a minute. This went on for a few days and doctors put her on a course of valium to stop it. It was awful but thankfully hadn't happened again since. Mum goes to liverpool in england for all her treatment as northern ireland doesn't have as good doctors for epileptics. This makes it difficult when we need help. Over the past month at least once a week the type of fit i described above has been happening and doctors just keep upping her dose of frisium, no-one knows what it is or how to treat it. She had a VNS fitted in April this year and has had it turned up to 1.0 with no real change in her fits. Sorry this is so long winded but has anyone else experience this type of seizure and what advice have you been given?

 

[Meetz1064]

Hi there

Sandy, and welcome to CWE.

First, I MUST commend you. I'm SURE it SUCKS BEANS having to watch your mom like this. It can't be easy. You deserve some kudos for trying to do what you can to help her. :clap::woot:

May I make a suggestion or two (maybe more?) How about starting a journal? OK, I know this sounds like a PAIN IN THE ARSE. But at this point, WHAT DO YOU HAVE TO LOSE? Record things like the meds, doses & times taken; what's eaten and when; sleep--duration & when; TV, computer/video game time--duration & when......Eventually things will start to show up that may prove to be triggers. What I mean is this: some people have their seizures triggers merely by specific foods. Some are triggered by specific LIGHTS. Some are triggered by specific SOUNDS.

By keeping track of all those things I suggested, over time, you, she and the doctors, may be able to figure some of those things out.

I, as well as several people here, are triggered by gluten, so we are on the GARD diet.....which you can find links to here. (I will paste some links into this post later on down). While the diet may not completely eliminate our seizures, they've been cut back quite a bit. The GARD diet may not be the right diet for your mom, and that may take some experimenting. But, do the journal, and see what happens.

How often does she see her neuro there in Ireland? How often does she have to travel to England for treatment?

It sounds as if her VNS needs to be turned up more, but I might be wrong. You can ask Birdbomb, one of the SuperModerators, more about that. She has her own message board dedicated to the VNS.

http://www.coping-with-epilepsy.com/forums/tags/epilepsy+101.html

http://www.coping-with-epilepsy.com/forums/tags/gard+diet.html

http://www.coping-with-epilepsy.com/forums/tags/alternative+treatments.html

Oh, and BTW. Welcome to CWE. You've found a WONDERFUL place to be. Mr B has built us an AWESOME home here. You'll have a great time making new friends while you're checking out all the nooks and crannies here...

Take care,

Meetz
:rock:

 

[RobinN]

Hi Sandy - Welcome

My daughters seizures were worse when on meds. She had a different type added with each of the four meds. What has helped her is the vitamins and minerals that I have researched. These support brain function. Also the diet that Meetz recommended. This diet is used by many people not just in the seizure family. Many with other neurological issues are finding it helpful.

I suggest that she also watch all additives and neurotoxins that are in processed foods, sodas, and you will even find them in some "health" foods. You have to learn what they are and eliminate them from the diet. Difficult I know, but a must when fighting this thing called E.

Hang in there. You will be kept busy reading all the old files here.

 

[skillefer]

Hi Sandy! Welcome to CWE...As Meetz said, see if your mom will start a journal. Also.....has she gone through menopause yet? Believe it or not, hormone levels can trigger seizures too. If your mom really drinks alot of coffee, tea, or soda, make sure that she starts cutting back...I wouldn't suggest quitting drinking them cold turkey, as the stress that would put her body through could trigger a seizure. Feel free to ask questions, vent, or just chime in.

 

[Bernard]

Hi Sandra, welcome to the forum. :hello:

Meetz gave you a lot of good links to investigate, but I'd recommend you start here:

http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

There are a number of things that are within your (or your mom's) power to try and improve her seizure control that don't rely upon drugs.

... She had a VNS fitted in April this year and has had it turned up to 1.0 with no real change in her fits.

There are several different parameters that can be changed with the VNS. Some people do better with lower strength settings and changes to the cycling (frequency, duration, etc.). You might consider hopping over to Birdbomb's VNS Forum to talk to others with the VNS for more info on their experiences.