Dla & epilepsy-- recived dbd33 letter does this spell bad news????

emmab2001

woodbine wrote: »

many people with epilepsy claim dla successfully,i for one
I did pick up on what you said about getting an aura prior to the tonics(metal taste in mouth)they would have picked up on that as well,how often do you have absences and are they without warning?
The fact that you havent seen a consultant for 4 months is irrelevant,i only see mine at best evry 12 months for meds review.
good luck

thanks for the hope in my claim coming through!! aura is ony about 30 seconds before the event not long but enought for me to lay down safe if i'm at home or tell my husband if we are out absences are daily many times

vandanfc wrote: »

Emma, can you ask to see your consultant, you really need your meds looking at and adjusting.

What may also be causing confusion is that usually absence seizures are seen in children and young people, very unusual in an adult, so this may be one of the reasons for DLA asking for more info. http://www.patient.co.uk/health/Epilepsy-Childhood-Absence-Seizures.htm

thanks for this i did not know this it was my consultant who referred to them as this i think i group too many diffrent things under the absence label though as i know i have emotional and behavioural problems when i have seizures my husband says i'm another person and i have no memory of how i act at the time i think i'm going mad sometimes i also tend to repeat things a long like moving things round and re typring letters on my keyboard

i worry more about my childrens reactions to this my 2 year old has seen many fits and has to see my moods too during serizures emotionaly i have told my husband to leave and that i hate him and the children i have truly said some horrible things that i don't want them and i have on one occassion pushed my 2 year old away from me my husband steped in and i did not hurt him i just moved him away but what type of mother does that??!!

things at there age they can never understand and i don't think i can ever forgive myself for i just want to get better on the right meds and get on with my life but with my husband having to leave work because of me and the kids we really need finacial input the DLA would give us

sarahlouise210

vandanfc wrote: »

Emma, can you ask to see your consultant, you really need your meds looking at and adjusting.

What may also be causing confusion is that usually absence seizures are seen in children and young people, very unusual in an adult, so this may be one of the reasons for DLA asking for more info. http://www.patient.co.uk/health/Epilepsy-Childhood-Absence-Seizures.htm

I dont think this information is correct - I myself have had absence seizures (as well as generalized seizures) since I was 15..and I am now in my 40`s. I know many other adults who do to as I am a member of several epilepsy groups. I know it says "usually" but I have never heard that they are usually found in younger people.

I also think you should see a consultant - your GP should never be adjusting your medication, especially with a new diagnosis

emmab2001

woodbine wrote: »

i`m sorry but i`ve been in contact with many people with epilepsy over the last 11 years of all ages and absence seizures are far from unusual in adults,and the link you give provides confusing information.What can be said is that children who have only absences usually grow out of them in their late teenage years.Also the OP saw her consultant in sept 2009 it is not always a good idea to swap and change meds just for the fun of it.

sarahlouise210 wrote: »

I dont think this information is correct - I myself have had absence seizures (as well as generalized seizures) since I was 15..and I am now in my 40`s. I know many other adults who do to as I am a member of several epilepsy groups. I know it says "usually" but I have never heard that they are usually found in younger people.

I also think you should see a consultant - your GP should never be adjusting your medication, especially with a new diagnosis

thnak you both for the confirmation about adults having absence episodes i was a little worried then!!!

my consultant had written clear instructions for my gp in regards to meds and to his credit he had folllowed them increasing the troprimate and reducing the epillim but now even the gp says my condition has deteriorated to much to follow the consultants advice and meds and i need a face to face with him again again

although this could take up to 12 weeks i have to go back to my gp next week and keep a diary of episodes he says with that he could then put in an emergency referral!! but this all leaves me still off work unhappy and i will be out of a job at this rate!!!

Indie_Kid

emmab2001 wrote: »

thanks for the hope in my claim coming through!! aura is ony about 30 seconds before the event not long but enought for me to lay down safe if i'm at home or tell my husband if we are out absences are daily many times

Have you made this clear on the form?

emmab2001

sh1305 wrote: »

Have you made this clear on the form?

thank you so much for your help

i did as i thought i should make them aware of the time scale as the aura is only slight and very sudden on some occasions i dont have one at all

i have never had one when it comes to the absences

sarahlouise210

Topirimate can cause memory problems and also anxiety and anger ... it may just be that this is not the right medication for you. I have taken Topirimate am not taking it anymore as the side effects outweighed the benefit.

vandanfc

What I was trying to point out is that IF DLA are relying on this sort of info., then this MAY be one of the reasons for further questions !!

Meds should be reviewed IF they are NOT doing there job, which is clearly what is happening to the OP. If her seizure types are changing and not being controlled her meds need reviewing.

[Deleted User]

for anyone who has epilepsy or who have friends or family with the condition the NSE have an excellent website with a great and active forum(free)
http://www.epilepsysociety.org.uk/Homepage