Epilepsy

FranknFurter

I read recently that approx 1 in every 200 people have epilepsy of one kind or another.
I'm photosensitive and have regular tonic-clonic (grand-mal) seizures.
I'd love to hear from others about their various experiences & treatments and how well they're working for you.

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FranknFurter

C'mon, the amount of people who use boards.ie, there have to be some people with epilepsy.


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Amz

Not a lot of people might want to discuss such conditions on a public forum. They may feel uncomfortable with the prospect of people they know reading about their experiences etc.

Try be a little more patient, this forum doesn't exactly get heaps of traffic, so it may take some time for other people with epilepsy, or with experience of the condition to read your thread.

FranknFurter

Amz wrote:

Not a lot of people might want to discuss such conditions on a public forum. They may feel uncomfortable with the prospect of people they know reading about their experiences etc.

Try be a little more patient, this forum doesn't exactly get heaps of traffic, so it may take some time for other people with epilepsy, or with experience of the condition to read your thread.

(Well, in fairness, asking again four days later aint exactly being impatient imho. Was just hoping it would be seen from the main page at a time of high traffic on the entire boards.)

But yep, I know there is still a lot of social stigma around epilepsy, I just figured as 99% of us here (on boards) use anon usernames it might be worth throwing out there as a possible discussion topic. Tis a quiet forum, but it does have its regulars.

One of the big great advantages of this boards (all boards really), the majority of peoples can talk without worry of being recognised if they so wish. so, thought it might have been a "way in" for somone maybe

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Rev Hellfire

Well my daughter suffers from Infantile Spasm and is on three lots of medication which on the whole have reduced the level seizures but not totally removed them.

You've asked about medication which is something many people would be reluctant to talk about while not really giving any information yourself.

FranknFurter

Sorry Rev.
Right now, for the last few years I'm on a mix of Rivotril, Lamictal, and Keppra, none of which are controlling it at all well. They are stopping the bulk of the seizures I spose, but the doses Im on would sedate an elephant. My doc tbh, isnt all that clued in when it comes to epilepsy (Iv changed docs twice in 2 years, kinda limited by distance).

I was on Tegretol from the age of 7-21, but I got myself off that because of the side-effects, basically because of Tegretol, I have little to no memory of my childhood. Only when I see somthing like brown carpet or woodchip wallpaper will I remember tiny bits of my childhood like "Oh! didnt we have that wallpaper in the old house? Wasnt it blue?"

Tegretol basically ruined my life for a long time. Turned me from a happy child into a depressed nightmare at the age of 7 according to my mother, she now says if she known then what she knows now, there is no way she would have let them put me on it.

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Rev Hellfire

Well as I said before before the issue we deal with is Infantile Spasm/West syndrome.

In terms of medication we're using Eplilim, Phenobarital and sabral.
These have reduced the siezure activity to typically mild ones ie eye flickering etc.

We additionally looked at ACTH, but had temperature problems with that.

FranknFurter

yeah, epilim dint agree with me unfortunately, I was using the kind with the enteric coating and gave me rather bad heartburn / acid-reflux, somthing to do with me rather than the drug itself tho' I think.

I've not tried the barbituates like Phenobarbital to my knowlege (unless when I was really young). Somthing I might ask my neurologist about. You know of any questions worth asking when it comes to that one?

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