Epilepsy

fallen_angel_69

i've had epeilepsy for approx 25 yrs or so i had 1st fit when i was 13 i'm now 38 (if say quick enough i dont sound as old ) i take lamictal and keppra i've never been allowed dla or anything my fits are sleep related and stress related .You need to inform your insurers that you are eplieptic and qualify for all the needs the dvla require and my car insurance has never been loaded I'm really lucky i have been driving for 4yrs and from when i started having fits i was always told you'll never do this you'll never do that so you never know what can happen as regards to the future as i say keep taking the tablets they keep me driving and stuff and i count each fit free day as a bonus

NetalBeattie

GlasweJen wrote: »

re. DLA getting taken off you. Mine was taken off me even though i have 2- 3 seizures a week! Idiots just want to save money i think

As a former adviser at the CAB who also has epilepsy, I think people need to realise that having a medical condition does not automatically entitle you to DLA.

You need to show you need help with mobility and personal care.

The two main boxes that can be checked if you have epilepsy is that you can't prepare a cooked meal for yourself without supervision (personal care) and you can't go out on your own in case you cause harm to yourself (mobility).

If you provide evidence of these you should get the lower mobility and middle personal care.

If you have nocturnal seizures and need someone to give you valium at night you can get the higher rate of personal care, as you need help both day and night.

GlasweJen

I did show that, I went into minute detail of my day to day routine from needing help getting up in the morning due to postural hypotension, needing help when near stairs, needing supervised in the bath/shower, not being able to go near a cooker or glass/ceramic cookware or hot pots or knives. I told them about my arrangements being supervised getting to uni, being supervised at uni, being supervised en route to my (supported) part time job, the support I recieve. The fact that after an episode I am completely disorientated and then as an appendix I detailed all of my A&E visits in the last month. They just weren't interested.

NetalBeattie

GlasweJen wrote: »

I did show that, I went into minute detail of my day to day routine from needing help getting up in the morning due to postural hypotension, needing help when near stairs, needing supervised in the bath/shower, not being able to go near a cooker or glass/ceramic cookware or hot pots or knives. I told them about my arrangements being supervised getting to uni, being supervised at uni, being supervised en route to my (supported) part time job, the support I recieve. The fact that after an episode I am completely disorientated and then as an appendix I detailed all of my A&E visits in the last month. They just weren't interested.

This is quite a serious case of injustice. You should contact your MP, or at least seek advice from the CAB. Other than the problem with postural hypotension most of what you put down I also did. In addition I put down that the stress to the body from walking can cause seizures, and I need 3 days to fully recover from a seizure (mine are once a week). I got Middle Personal Care and Lower Mobility.

System

i managed to get DLA for my 11 yr old who has mostly abscence seizures but over the last 3 months they have progressed to grand mal. i was expecting to be refused but the claim sailed through she gets middle rate care + lower rate mobility a total of £250 pm.my ctc has also increased by a £2-3 pm but i earn too much to qualify for the carers allowance.much to the annoyance of my extended family the money goes into her acc[ we believe its her disability so the money is hers] so she can buy herself the more expensive items she wants ie laptop.

jamamamma

CHRISSYG wrote: »

i managed to get DLA for my 11 yr old who has mostly abscence seizures but over the last 3 months they have progressed to grand mal. i was expecting to be refused but the claim sailed through she gets middle rate care + lower rate mobility a total of £250 pm.my ctc has also increased by a £2-3 pm but i earn too much to qualify for the carers allowance.much to the annoyance of my extended family the money goes into her acc[ we believe its her disability so the money is hers] so she can buy herself the more expensive items she wants ie laptop.

I was just wondering how you were able to get DLA. I have 2 sons with epilepsy, asthma and milk allergy and was just refused DLA for both. Any advise?

System

jamamamma wrote: »

I was just wondering how you were able to get DLA. I have 2 sons with epilepsy, asthma and milk allergy and was just refused DLA for both. Any advise?

my DD epilepsy is so far uncontrolled she takes 600 mg twice a day epilim +1000mg twice a day keppra ,i literally explained that she cant go out by herself etc her grand mal started after i had sent the claim in so i rang them and they ammended the info , i also gave them permission to contact her consultant and in the letter i recieved back it stated that on the info from me + the consultant the claim had been sucessful. after hearing the stories on mse i didnt expect to get anything for her but it went through in approx 4-6 wks. the 1st payment [back dated] went into my acc before the letter came!

jamamamma

Thanks for that. I have one son on just Tegretol - 100mg 2x's daily (he is 18 months) and my 5 yr old is on 250mg Tegretol and 250mg Keppra. This keeps the number of episodes down but they are not seizure free for more than a week. Will try more detail. Perhaps a diary from the teachers at school reflecting the number of absences he has as well as the grand mals. Congrats on your success. Will keep at them.

GlasweJen

I was previously on middle care lower mobility, I don't know why i was knocked back this time and CAB don't seem interesting.

I've asked for them to relook before the appeal so if they don't award me for it i will be onto my MP

[Deleted User]

sniperpenguin wrote: »

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

The above surprises me somewhat
would you prefer to still have seizures and thus be labelled disabled and get benefits,or be controlled by medication and be able to work and drive and have your freedom?
Given a choice of the 2 I know which i`d choose....