PIP / ADP for Chronic Migraine?

[greentape]

I think I am going to have to apply for this benefit. I am currently so disabled by chronic migraine and struggling to function. Has anyone applied for Chronic Migraine and if so how did you find the process? Any advise?

A lot depends on how well the forms are completed…..you need to use the jargon they like

My friend explained this to me when she used a group who are on FB to help with her writing it. They tell you that you have to word things in specific ways and say certain things to increase your chances.

Apply for it this weekend if you can, your claim starts from date of application.

people without chronic ones don’t understand. Just be very detailed, such as in the last calendar year, I’ve had x amount of migraines, they last x amount of days, this is x% of the month, please see attached letters etc then tailor it to each question, when I have my migraine which is x percent of the month, I cannot do (depending on the question being asked) x y z, etc etc, you can read on various fb groups the details they want, they likely won’t be about migraines but you get the gist of what they’re wanting to know and understand.

It's fraud to just talk about your worst days

Yes crazy how many people on these sites tell others to write a PIP form just based on your worst day. A worst day could be once a month or once a year. It's fine to describe how you are on a worst day but context must be given for how often these are if a condition is variable for it to be an accurate portrayal of how life is. I think the assessors are thorough in asking the right questions as they must suspect a lot of people are just writing about their worst day.
When I'm helping people with PIP forms I will detail how their condition is variable, how they are on a worst day and how many days are bad days or if a condition is unpredictable eg seizures or knee giving way. the more detail the better and of course plenty of medical evidence.

@Minty25 @DiscoZombie idealistic viewpoint from both of you that the system works. When my mum was going through chemo they told her she could work full time because she was able to hold a pen & put her coat on by herself. We are both nurses and have never been unemployed or in receipt of benefits and were very shocked to learn that the system completely lacks humanity & comes down to ticking box’s. We almost lost my mums house as a result. The OP suffers upto 25 days per month, it’s not a stretch to tell them about 3/4 of her month.

I don't think so, you tell them how you are on your worst days but are honest about how frequently that happens on average. Thats not fraud or lying its the truth.

@graveyhu Thank you that is good advice I'll take a look on facebook for more information.

I’m a chronic migraine sufferer and I also get PIP for multiple other disabilities. I honestly can’t see how migraine on its own would fit the criteria tbh, however I wish you well OP.

I don’t work as no one would employ me with the amount of migraines I get. It is much easier to make myself some food or dress myself than have a job, so I don’t understand it either.

I have been through most of the same medications as you OP, eventually onto rimegepant which stopped working after a few months. I went to NMC and asked for the injections to try (would have paid anything at that point). Like PPs, they have changed my life, I now only have 1-3 short migraines a month. I have fought for the last 2 years to get Ajovy injections on nhs which they finally agreed to. Don’t give up, and try and fight for the injections next. It’s crazy we have to fight for this medication when they have ruled most of my life so far

When PIP was still called DLA I used to claim. Late (40) diagnosed with epilepsy and I also have migraines.
I stopped claiming DLA when my seizure frequency reduced although it’s never been fully controlled.

My neurologist told me epilepsy and
migraine are the top 2 most common neurological conditions. Personally I find migraines more difficult to live with .

As others have said you need to demonstrate how migraines interfere with your daily life. I would also mention how unpredictable an attack can be. What would happen if you were out, how would you cope, how would you get home?

I take Maxelt Melts, it’s a triptan. Works great but I am
a zombie after taking it plus my kidneys work overtime. I wee for England on those meds.

In relation to your mum's chemotherapy , PIp isn't about whether you can work or not so I don't understand why they would say she could work ? If it was a work capability assessment then if people are going through chemotherapy they are automatically put in the no work requirement group without an assessment. I worked in Macmillan benefits team for some years and never known anyone told they should be working throughout chemo treatment. I'm sorry your mum went through this it doesn't sound right.

If it gives you hope I have had a few clients awarded for migraines similar to your situation. Definitely worth applying, they sound utterly debilitating.

Why are people trying to put the OP off applying for PIP when she has a debilitating condition that makes normal life impossible? I’m sorry OP, you must be beside yourself with the pain. Migraines are awful.

And yet posters on here fall over themselves to justify getting full PIP and a luxury BMW because they’re a bit anxious and everyone’s in full agreement. 🤷‍♀️

I think most people think it's just a headache and we'll be fine if we just take a few paracetamol

I developed them in my teens. The most frightening part was the aura. I couldn't explain what was going on. I remember going home from school and just crying because of the pain. I appeared to grow out of the migraine plus aura. It started again in my early 20s but I was "lucky" it was "just" a migraine and no aura

Bearing in mind someone who has pip was probably given more points under the old system.
its now that counts.
i have mid stage Parkinson’s, so therefore will not improve, my review is a few years away ( currently)

There’s no harm in applying and I sympathise immensely. It may be worth phoning the Migraine Trust to talk things through. Apologies if you have already done this.

I get PIP for this. I have suffered with hemiplegic migraines since the age of 12, been hospitalised multiple times for attacks that they’re weren’t sure were strokes or not or just to help with the pain. It’s debilitating. Today is. Good day where I can read and type ! 9/10 I can’t. I didn’t respond to medication. I have severe hormonal imbalances and my consultant has told me ‘maybe you’ll get relief at menopause’

@bacteriaphobia I've been told this myself that I should hopefully feel better once past menopause but I've had a completely limited life. No children (how could I when I can barely look after myself, no career (I had to give up a proper career I really loved), no holidays, hardly any friends because I could never drink, stay up late or join in with the normal things other people do. I honestly don't like to dwell on it too much.

My consultant seems to think that I’ll be reassured by the chance I may feel better after menopause (which doesn’t seem to be in the near future) my oestrogen levels are always far too high. Apparently that will be contributing massively to my migraines. But nobody seems to be able to offer anything to help. It’s so frustrating isn’t it

@bacteriaphobia Its very cold comfort indeed. When it comes right down to it they still don't even fully understand the cause or even the full mechanism of migraine so much of what they use is a bit of a crap shoot. Even the targeted CGRP medications only work for about 40% of people and they are even less successful on chronic sufferers. Even for those they do work for they often begin to fail after a year or two. It is very frustrating.

@greentape Try reading the thread next time before in your haste to be unkind, jumping in and saying something and embarrassing yourself!

Look I genuinely wish you well, but find it a bit rich to be called hasty, unkind and uncomprehending. I spent decades treating patients with migraine and understand it very well, and also understand the treatment paradigm well. I absolutely understand what you have tried and where you are up to in the paradigm, and was pointing out that it’s not last line.

Do you know it's different for everyone?

There will always be something more I can try, should I just hold off seeking assistance until I'm dead just in case something 2 or 4 or 8 years down the line works? Even if you are a medical professional and given your previous response you'll forgive me if I have a hard time believing you but even if you were I doubt you have the knowledge and expertise of my specialist neurologist. Perhaps you think I could have tried some of that experimental migraine surgery offered by an NHS neurosurgeon who proceeded to ruins the lives of many people with his butchery? After all I should just go on for another 20 years of chronic pain without seeking any help because there will always been another drug (many of which that have done me more harm than good) than dare to seek a penny of support.

Sorry I just don't believe you know anything about migraine or have any understanding of what sufferers go though.

My surgeon experimented on me and ruined my life - BBC News

@DiscoZombie They didn't read the thread and then jumped in with a hasty little comment because I'm asking about claiming benefits. Then they came back with a laughable claim to be some kind of medical professional who treats patients with migraines and thought I'd believe them. I may be disabled but I am not stupid.