Epilepsy

sniperpenguin

I suffer from the fate of having controlled epilepsy through a daily cocktail of Carbamazapine (Tegretol Retard) and Levitaricetam (Keppra). Thanks to a lot of control, lifestyle choices (no smoking / drinking) I've managed to stay seizure free for a number of years...

However, there-in lies the issue. Because Ive fought to get my driving license (twice) and hold a full-time job, in the eyes of the government I may as well not have it - Im not entitled to any assistance, and as far as I can tell Im not recognised as "disabled" by any set of criteria (DLA, DWP, etc...)

Sorry for the rant, but this is a sore point for me

lucyhope

I'm in the same boat sniperpenguin, I've been epileptic since I was 28 and have never had a penny. I was told years ago I would be able to get DLA and was turned down because I could cook a meal! AEDs caused Lupus so I was in a state for a long time, changed drugs and have been seizure free for 3 years and the Lupus has gone. Those of you who got your driving license could I ask you if your insurance has been much more expensive, I'd love to be able to drive (my DH is disabled and it would be such a boon to us) but this is what puts me off.

GlasweJen

Well that might be my problem too, i got a supported job at ASDA through the disability service at jobcentre and suddenly DLA needs renewed and goes bubyes. Unfortunately i wont ever be cleared to drive as my cardiologist and neurologist both agree that i will never be controlled unless medicine advances fast.

mercedes125

I am looking for work and the job centre are helping me through the disability service the thing is im on dla because of epilepsy and i can just imagine me losing it even though they say you can still work and recieve it. How long after you started work did the stop it.

jules999_2

Re the vagal nerve stimulator. My son had it fitted over three and a half years ago at Alder Hey, he has uncontrolled epilepsy and has several generalised seizures a day though taking two anti convulsant medications. He had the VNS fitted though there is to date no improvement in his seizures. The operation was quick and he was home the next day, he does have a large scar.
I wish I had asked one more question before the procedure as I asked that maybe we could remove the VNS as it isn't helping and have been told that it can' be removed from his body as the wires are wrapped around the vagal nerve and tissue grows over these so unable to remove it.
If you travel out of the country you need a doctors letter as you aren't allowed through the magnetic detector at the airport and also because you have meal in your body so hard to just jet off last minute or spur of the moment, not that we do but thought useful to know. I wish I had done more research into the success rate of the VNS on people who have more severe eplilepsy though do know someone whose child has petit mals and they say they have seen an improvement. Hope this is of some help to ChloeB.

FROSTYFRECKLE

Sorry I'm a bit bleary eyed been up for 22+ hours. Did I just read you get free epilepsy meds? Hubby has 3 epilepsy meds and pays? We are in Scotland, if that makes a difference. Also if you have meds for other neuro condition, can you get them free? If the free meds are dependent on being on means-tested benefits please ignore my questions cause we will need to continue paying.

GlasweJen

it does apply in scotland too, you get the exemption form from your doctor. It doesn't apply to other neurological conditons though so people like me pay the full whack even though the conditions have the same effect on patients.

sniperpenguin

lucyhope wrote: »

Those of you who got your driving license could I ask you if your insurance has been much more expensive, I'd love to be able to drive (my DH is disabled and it would be such a boon to us) but this is what puts me off.

Doesnt effect it.... when they ask, I state "Epilepsy fully controlled by medication". If the DVLA state that Im safe to drive, who are the insurers to argue?

Only point Id mention is that if you currently get Mobility in any way (as you are both disabled) then you suddenly becoming independant may affect that. (annoying isnt it? Reward effort and control with a kick in the balls)

lucyhope

Thanks for that sniperpenguin, DH gets DLA higher rate mobility and care but the only thing I have is a disability bus pass which I make full use of. I only asked because travel insurance is a nightmare to get and I assumed that would be the same.

Barneysmom

MY hubby has epilepsy, he's had it since a big accident in his lorry about 3 and half years ago. Can he claim DLA?
We still has seizures, hand/jaw clenching?
He fell in the garden a little while ago and broke 3 bones in his foot.
I do feel for him, we never go anywhere much now. I go to work.