anyone successfully claimed DLA for migraine

lizzyjane_2

darkrev wrote: »

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.[
Hi Darkrev, you have my full understanding and sympathy. And YES I have SUCCESSFULLY claimed DLA last September. I too see 2 neurologists, one in Queens Square London. I am new at forums so do not know if you are getting this brief info.

Sudz_2

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...

I was on Sumapatriptan for years and took a heart attack in June, I was given an angiogram but told my heart was healthy and that I had aqquired Long QT syndrome brought on by the migraine pills. I am now unable to take anything for the migraines and i'm awaiting a hospital appointment to see what alternative treatment they can offer. Meanwhile i have to go for an Atos medical assesment on Tues which I am dreading. I want to work but who is gonig to emply me if i have to be off work 3 or 4 days a week!
Just be aware these pills have serious side effects :mad:

thistledome

darkrev wrote: »

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.

lizzyjane wrote:

Hi Darkrev, you have my full understanding and sympathy. And YES I have SUCCESSFULLY claimed DLA last September. I too see 2 neurologists, one in Queens Square London. I am new at forums so do not know if you are getting this brief info.

Not being rude, lizzyjane, but I had trouble reading your post so have tweaked it a bit. Hope you don't mind.

I have nothing to to add for OP, unfortunately, except commiserations and best wishes.

GlasweJen

It's old but I helped someone about 5 years ago claim for chronic migraine. Only managed to get low care at tribunal even though this person was on the severe end of the scale (eventually committed suicide through the pain). It was a toughie and we had a shed load of reports to submit to the panel.

Brassedoff

darkrev wrote: »

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

Christ, your mates don't call you lucky do they? Not very helpful I know, but I was cringing reading all those things that happened to you.

GlasweJen

Dark rev I'm not up to much at the moment but if you PM me specific questions I can put some answers together but it might take a day or so.

mazy_m

Hey OP I'm not much help on the claiming side of things....but on the migraine side I can try and help a little....I've only had a quick skim on here so sorry if I double up on anything !!

As a fellow sufferer I know what you mean about it not being "seen" I've had so much time off of work from it and I feel so bad as I work in a school so it'd letting my kids down but on the days when I have the bad ones I can literally stagger to the toilet, bed or sofa...I cannot do anything but lie there and feel the pain...my boyfriend has to cook for me and everything...mine can last anywhere from a few hours (very rarely!!) to a few weeks......the pain made my blood pressure go so high once I had to be admitted into hospital for hypotension it was practically off the charts...they tried so many times to relieve the pressure with lumbar punctures....I'm absolutely terrified of needles but I was so weak and lethargic from the pain being there for weeks I just lay there while they were attacking me with all sorts of needles it was such an ordeal!!

Anyway just letting you know that I can fully understand your pain...

The diary is a fantastic idea as I found when I ate certain things it would trigger an attack so now I avoid these things... mainly cheese (I loved cheese before!!) coffee (again I loved nothing better than coffee especially espressos and lattes!! mmmmmm) and chocolate sometimes luckily this doesn't seem to trigger them too bad for me (I have no idea what I would do if it did!!)

I still get them....I actually am just now getting over a really bad one from last friday that I can still feel there a bit!!
But Sumitriptan seems to have been my angel!! (although after reading about what it can do to the heart it's kinda scary!!)

I also found that when I made myself go the gym and exercise it seemed to stave them off also...

I hope you're ok and these ideas might help you a little bit good luck with the claim I hope it gets sorted.


Maz x

Trialia

Sudz wrote: »

I was on Sumapatriptan for years and took a heart attack in June, I was given an angiogram but told my heart was healthy and that I had aqquired Long QT syndrome brought on by the migraine pills. I am now unable to take anything for the migraines and i'm awaiting a hospital appointment to see what alternative treatment they can offer. Meanwhile i have to go for an Atos medical assesment on Tues which I am dreading. I want to work but who is gonig to emply me if i have to be off work 3 or 4 days a week!
Just be aware these pills have serious side effects :mad:

Oh, no, I know that. Naratriptan is one of the newest of the family, with a great many less side-effect problems than sumatriptan. It's one reason I'm on that particular triptan - particularly since I also have dysautonomia as a part of Ehlers-Danlos syndrome. I don't need warning, but I appreciate the thought.

GlasweJen

You know trialia, I have dysautonomia too, totally different manifestation though.

OP, have you tried claiming without naming your diagnosis?

Trialia

GlasweJen wrote: »

You know trialia, I have dysautonomia too, totally different manifestation though.

*nods* It can manifest in so many ways. For me it's pretty much postural orthostatic tachycardia. Watching my sugar and salt intake very carefully now; if I don't have enough of either, hi fainting. Heh.