anyone successfully claimed DLA for migraine

darkrev

Ok, i'm not talking the average migraine, horrid though they are. In medical terms I am talking an acute and chronic ( legally ore than 15 days a month) in reality 365 days a year. Yes really, 265 days a year. I have this in writing from my neurologist.

I have 2 neurologists and a clinic in London who have spent 2 years trying to fix me to no avail and in the meantime I have unsuccessfully been trying to claim DLA, Even although rate this condition as in the top 20 of most debilitating conditions. The medication is also severe and i'm not a lab rat for all sorts of unconventional brain altering drugs which have horrendous side effects.
Please has anyone out there any experience of a successful claim for this neurological condition who could offer support or advice. The DWP are really just judging it on face value and not considering that this is an exceptionally severe case. I have a tribunal in a few months and I have submitted as much evidence as my experts can provide with no luck> Please does anyone have any constructive , supportive ideas.

dmg24

What care and mobility needs do you have?

soolin

dmg24 wrote: »

What care and mobility needs do you have?

I echo this, as someone who went through a spell of chronic migraines a few years back even to the point that when I developed meningitus I didn't realise as it was no worse than my normal migraine.

OP I really do sympathise with you, it got to the stage where I would phone the clinic and just cry as I couldn't even say my name as talking hurt, but I never had care needs that correspond with the DLA requirements. However I accept that everyone of us is different, but dmg24s post is very relevant, do you have the outline for the criteria you need to 'fit' and have you studied it with your specialists?

darkrev

soolin wrote: »

I echo this, as someone who went through a spell of chronic migraines a few years back even to the point that when I developed meningitus I didn't realise as it was no worse than my normal migraine.

OP I really do sympathise with you, it got to the stage where I would phone the clinic and just cry as I couldn't even say my name as talking hurt, but I never had care needs that correspond with the DLA requirements. However I accept that everyone of us is different, but dmg24s post is very relevant, do you have the outline for the criteria you need to 'fit' and have you studied it with your specialists?

I have a list of the guidelines and yes I fit some of them but the problem is the links are not as obvious as , for example having a leg injury to affect mobility. So things like .... because of the nausea ( from the migraine , but also from the Parkinsons drugs they are giving me which are toxic, it makes me violently sick all day,and night, the visual distortions, hallucinations, flashing lights, dizzyness , vertigo and balance difficulty, I have difficulty getting around even just in the home> If you will it's an extreme version of the disorder. So The link to mobility is not as obvious. as an example of this I have cracked my coccyx, severed a tendon in my foot ( i fell into a work surface which dislodged a knife) and given myself concussion when an iron fell from a shelf and hit me on the head as I staggered into it. These are just examples. There is a whole list of stuff with the added factor of idiopathic anaphalaxis which needs emergency attention and situations occur too frequently for my liking and need e to have wits about e that I just dont have right now< and no my specialist havent helped me with the forms, they dont have that sort of time. please if you have already been through this, would you pm me with any ideas or suggestions as to how to improve the healing of this and any help you could suggest as i have never met anyone in this situation and it would help to have light at the end of the tunnel

soolin

darkrev, what you are describing though is a potential valid claim to DLA via other routes, not via the migraine route. It actually sounds like migraine may be the lesser of some of the other things you have going on.

If you wait for some of the others to log in this morning they will be able to suggest where you can get help to fill out forms correctly and what exactly you need to prove to get DLA. Medical need alone though is not a criteria, you will need to prove you cannot , for instance, make a meal or wash yourself.

My mother lost her DLA at one point even though she had a hip entirely removed due to MRSA as when they called her they asked whether she could make a sandwich and she said yes if someone brings her the bread and butter and puts it on her tray in front of her..and she was deemed to be able to make a meal for herself! At that point she was still using a carer to assist he in and out of bed and with her bathing needs.

soolin

Just to add that I cannot offer any medical support at all firstly because of the MSE rules but also as I never found anything that made the migraines go away..apart from spending days of my life in a dark room with ear plugs and a bowl to be sick in.

However I suddenly started to grow out of them and am now off all the drugs and stuff designed to stop them occuring, I do limit my use of painkillers though as there was a study that taking normal over the counter meds can trigger migraine..and now I maybe only get 4 or so a year. So there is hope.

karmacookie

I wonder if someone on this forum would be able to help you

http://www.tna.org.uk/

It's for Trigeminal Neuralgia but many members suffer from other kinds of face pain and are often on a coctail of loads of heavy duty drugs for the pain

darkrev

soolin wrote: »

Just to add that I cannot offer any medical support at all firstly because of the MSE rules but also as I never found anything that made the migraines go away..apart from spending days of my life in a dark room with ear plugs and a bowl to be sick in.

However I suddenly started to grow out of them and am now off all the drugs and stuff designed to stop them occuring, I do limit my use of painkillers though as there was a study that taking normal over the counter meds can trigger migraine..and now I maybe only get 4 or so a year. So there is hope.

Thanks< thats ok< I understand> Sorry, I didnt mean medical advice, just any suggestions you might have hada to how to get through this, Yea I'm allergic to opiate painkillers and NSAIDS so I cant take any anyway, But thank you for the thought. Ive been in this situation " years now< I hope I grow out of it soon !All suggestions welcome !

MrsManda

It's not the diagnosis which matters but how you are affected.
The symptoms you are describing and their frequency make it sound like you should get care if not mobility as well.
I have neurological symptoms (no diagnosis as of yet) which are not as severe as yours sound and receive LRC and LRC which I got without a fight.

When filling out the forms you need to put details of your symptoms and how they affect you day to day rather than focussing on diagnosis as this is largely irrelevant.
When did you last fill out the form/get the decision for DLA?
Did you get copies of the evidence they made their decision on?
Did you appeal?
Have your symptoms got worse since?

Do you work?

Trialia

darkrev, have they tried you with all the triptans? I was in a cycle of two three-day migraines every week for a year, and naratriptan broke it for me...

darkrev

Trialia wrote: »

darkrev, have they tried you with all the triptans? I was in a cycle of two three-day migraines every week for a year, and naratriptan broke it for me...

thanks for your thoughts, I am way past the triptan stage, i was taking them so frequently it increased my stroke risk by 60% . I am being put on experimental drugs , the first one is Sinemet which is normally used for Parkinson's disease. it is very toxic, we are now looking at severing the nerves and nerve blocks........scary