PIP / ADP for Chronic Migraine?

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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?

Have you tried amitryptiline?

Here is a list of everything I have tried over the past 20 years:
topiramate, beta blockers, Cymbalta, SSRI's, flunarizine, candesartan, rimegepant, atogepant, gammacore VNS, rTMS, Amitriptyline, dosulepin, nerve blocks and Pizotifen. Next I am trying Botox and after that its injectable CGRP medications but I don't have a good track record with the other CGRP meds I've tried. My best preventatives were vns which is no longer available to me and Pizotifen which made me sleep 18 hours a day and the other 6 hours I spent eating and fighting sleep. Alternative treatments have been acupressure and massage, osteopathy, aromatherapy, herbalism, homeopathy, reiki, hypnosis, meditation, dietary changes, seeing a naturopath, TMS courses, supplements, cutting out all caffeine, I haven't drunk alcohol ever, ditto for smoking or any recreational drugs.

I do use triptan medication which helps but I only get a limited number and nowhere near enough to cover my attacks. I also get intense sleepiness from this medication.

Pip isn’t awarded for your medics conditions, it’s for the specific things you need help with eg do you need help with pets hygiene, preparation of food or mobility. The threshold for help is pretty high. Look at the specific areas you need to complete and consider whether you meet it - pain alone will not be enough. I don’t want to put you off but neither do I think you should waste what energy you have applying if you don’t meet the 8 point minimum threshold.

@mamagogo1 I can't do anything when I am having an attack, I can't bathe or dress or make food or eat. I have chronic migraine which is at least 15 days a month lost to migraine and I can have up to 25 days. I think I should be entitled to some support under the system although I do think it is unfairly stacked against people with neurological conditions or conditions that are intermittent.

Yeah you don't apply 'for' an illness. It's about what you can do. If you have little issue washing, going out, socialising, managing household finances, feeding yourself, doing errands then you're very unlikely to qualify.

But I can't do those things while I'm having an attack and I can't even socialise when I am doing Ok because it will likely trigger an attack, I can't cook or eat or run errands either when I'm having an attack and the attacks are the majority of days. So I should meet the criteria.

But unless you're having an attack more often than not you won't get enough points for it.

I found applying to Adult Disability Payment here in Scotland a much less stressful experience than what I hear applicants for PIP describe. They were really approachable and willing to help.

As PP have said, it’s about the quality of life and the impact of your chronic condition, and it definitely sounds as though you have a claim to me. The key will be to get good, solid evidence of all the treatments you have tried, and support from your medical team, together with evidence of impact on your life. Could be from an employer, family who support you when you have an attack, friends who can confirm you have had to miss events. Bank statements showing purchases of otc medication or ready meals because you can’t cook. Stuff like that. Good luck and I hope your condition miraculously goes away spontaneously.

My post title says Chronic Migraine the definition of that is 15 plus migraine days a month so it is more often than not. I also know of a women who has migraines 10 days a month and gets PIP. There is also the effects of postdrome and prodrome to consider as well as medication side effects.

I claim pip for migraines, i gets the lower end and receive £x amount a month in pip.
It was a task and half to get it i failed twice, until i got a support worker to help me.
Its hard to prove, i live in sun shades,cant deal with light or noise.
Some days its so bad i forget things names etc, like im here but not hear.

Just awful.

@EveryKneeShallBow Thank you that is helpful advice, I hope the Scottish system is a bit kinder and I hope that my condition does just vanish in the night and I hope you are doing well.

Worth applying surely.
Your condition has to affect you 50 per cent of the time.
I'm still waiting to hear.My anxiety literally affects my ability to travel alone everyday and I like you have tried everything in over 50 years.
Good luck.

@Stillpoor Sorry to hear that but good you got it in the end. I've heard it can take a few goes with many applications to finally get an award and that you often have to go to mandatory reconsideration or tribunal to get the award you should have had in the first place! I totally relate to everything you say about migraines it is a half life in the shadows unfortunately. I wish you the best.

@whatisforteamum Thank you, I feel like there is no harm in applying and I hope that you get good news soon.

Ok apply then. Good luck.

@BillieWiper Thank you I will.

I'd still like if others who have successfully claimed can share any advise the have on the process. I've seen their are some paid groups that help to guide you though the process, has anyone used any of these?

What do you want to know?

This is the process roughly...

On the forms you list your illnesses and then they ask how difficult it is to do a few different things.
It says things like can you cook and prepare meals?
Then you say sometimes, always or never.
Then say the reasons why you have trouble with it and what help you need. Not just the illness but describe how it stops you doing things or affects your body/mind.
They add up the points for each category and the highest is 4. That's for people who can never do that thing basically.
You then do an interview to add extra context and they then make the decision a few weeks later.
It could take a few months but they will back pay you from the day you started the claim if you are successful.
If you're not you can appeal.

Hope that helps x

@BillieWiper Thanks for that info.

I'd like some help filling in the form correctly especially as often my condition does affect my ability to do these things properly. I heard that some charities or groups can help so that you fill it in properly. There are some online groups as well that help although some charge a fee. I was hoping someone who had had help would respond.

I'm sure there are. I know of one but it's just linked to my jobcentre/local area. Wishing you luck x

You can often get good information from Benefits and Work which is an online advice forum, e.g this thread where someone is asking about PIP for migraines.
https://www.benefitsandwork.co.uk/forum/10-dla-esa-queries-results/141641-pip-and-migraines (quite a few long detailed replies if you scroll down)

Also, if you have a CAB in your area it may be worth asking if they can assist you.

I know how irritating it is when people say Have you tried…when you’ve tried everything! Nevertheless, in sympathy for your situation I’d like to share that my own chronic migraines with aura (up to 3 a week) were helped dramatically by a physiotherapy approach which was developed in Australia. It’s medical, but very little known here, but there are a few practitioners around the UK. See
https://watsonheadache.com - there is a practitioner directory on this website if you’re interested.

Migraine is horrible, as I know. But it passes, usually, pretty swiftly. It’s not a disability. 🤷‍♀️

Download a form and complete it honestly then point it up for yourself you’ll soon know whether it’s worth pursuing for you. Do you have a help you with food, meds, toileting, etc at the moment when you have an attack?

Get a letter from your neurologist about your struggles and the treatments you are recieving. Information about any carers who help you and what they help with. Pip is very hard to get but you've got nothing to lose

@Boomer55 I am glad that your migraines pass pretty swiftly, but I can assure you that for some people it very definitely is a disability. I have just come to the end of a 7 day migraine and like the OP I have tried a long list of medications and have yet to hit on the right one. For the last 37 years I have lived a half life where 15 to 20 days out of every month I am suffering.

I am under a neurologist and I take some pretty hefty anti epilepsy medication just so I can function for half of the month, but that doesn't help with the exhaustion or the muscles weakness. I can't work because I'm just too ill, I also don't claim any benefits because the preventatives and triptans help just enough to make sure that I don't qualify.

My cousin gets PiP and ESA for chronic migraine- he’s in literally constant pain and can’t function.