Chronic Migraine — Scope | Disability forum
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Chronic Migraine

Hi,
I'm new to this and hoping there may be others out there like me.

I have chronic migraine and was wondering if there are other sufferers, how they cope with their daily life, do they manage to work and what their experience is with PIP?

I was dismissed from my job on grounds of Incapacity and have been on ESA for 18 mths. Tbh I am very worried about my future as feel unable to work even on a part time basis at present.

I am 46, live alone and currently surviving with financial help from my parents.

Hope to hear back from someone...

Thanks

Emma

Comments

  • CockneyRebel
    CockneyRebel Member Posts: 5,217 Disability Gamechanger
    Hi Emma and welcome

    PIP is basically a test of functionality, try taking the self test on the B&W site. I know that chronic migraine can be very debilitating but each person is different

    http://www.mybenefitsandwork.co.uk/pip/indexxx.php

    Please come back and ask any questions
    CR

    Be all you can be, make  every day count. Namaste
  • steve51
    steve51 Member Posts: 7,154 Disability Gamechanger
    Hi @salsaem

    A very very big welcome to you this mourning.

    I hope that you are having a good day ????

    I have attaced some info below on "Chronic Migraines"

    https://community.scope.org.uk/discussion/34163/chronic-migraines

    I have also attached some info below on "pip/benifits"

    https://www.scope.org.uk/support/disabled-people/benefits/pip

    Please please let me know if I can help you further with this ??????
  • John1961
    John1961 Member Posts: 13 Connected
    edited October 2017


    Chronic Migraine I GET MEDICATION FROM THE DOCTORS FOR THIS AS I GET Migraine ALL THE TIME SO I SORT OF KNOW WHERE YOUR COMING FROM THY ARE HORRIBLE BUT THINK MINE IS CAUSE BY THE BRAIN DAMAGE I GOT 20 YEARS BACK I JUST FOUND OUT BY AN MRI SCAN AT HOSPITAL PLUS  SPINAL CORD DAMAGE AS WELL LEADING TO SCIATICA PAINS NOW SO MAYBE AN MRI SCAN WOULD HELP YOU salsaem ALL THE BEST FROM SCOTLAND 
  • CockneyRebel
    CockneyRebel Member Posts: 5,217 Disability Gamechanger
    Please avoid using large fonts as some people have diffuculty reading them. Thanks

    CR
    Be all you can be, make  every day count. Namaste
  • Nystagmite
    Nystagmite Member Posts: 603 Pioneering
    According to PIP / ATOS, (I receive PIP for other reasons) my migraines don't cause me any problems at all and neither does the medication. Topiramate / Topamax is well known for some quite nasty side effects.

    I don't know of anyone whose receive PIP for migraine, alone.
  • Tracyjane50
    Tracyjane50 Member Posts: 3 Listener
    I also suffer migraines they put me on sumitrpan but that no longer works as I have been taking it so long then i too was put on topiriate but suffered terrible side effects I am now on sodium valproate 200mg twice a day which is helping.
  • Nystagmite
    Nystagmite Member Posts: 603 Pioneering
    They took me off sumitriptan because it kept giving me nasal infections / sinusitis. They've now put me on Maxalt.
  • kirstyedgar1
    kirstyedgar1 Member Posts: 9 Listener
    Hi are you sure it is chronic migraine my son suffers something called abdominal migraines the pain is so painful he also sick at the same time he can not stand the light it can last up to 7 days before it goes he is taking 10mg propranolol twice a day it is a big help he has tried all sorts of medication but this is the only one that works but must take them all the time or the abdominal migraines come back.He has a poor attendance at school because it is so crippling.
  • salsaem
    salsaem Member Posts: 3 Listener
    Hi everyone who responded. Thank you all very much. I haven't been on as I was feeling low. I got a job through an agency but they let me go after 7 days as I got a migraine due to the lighting/heat and they refused to provide reasonable adjustments or even a workplace assessment.
    Yes it is chronic migraine as diagnosed by the neurologist. I have also had a MRI scan. I have been taking Eplim for nearly two years now. It worked at first but now not so much so I am being sent to the headache clinic. I tried a whole host of other medication prior to this. Acupuncture worked a bit but it was too expensive and my practice did not consider it feasible to offer it on the nhs.
    I have been wearing a magnet necklace for about 4 months and it gives me some relief.
    I was a welfare rights officer so I am aware of the benefits offered but was unsure about migraine.
    Thank you again to everyone who responded.



  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    During my last year of working I was suffering blinding migraines 3 or 4 times a week and my attendance was becoming spotty at best. It took over a year of my GP trying various medications (some mentioned here) before finally admitting defeat and referring me to hospital. After more delays I was finally given an MRI whereupon they discovered a ruptured cervical disc which was the source of the problems. So, after 15 months of treatment and then 14 months on the waiting list (during which I lost my job) I was finally operated on and, despite claims the surgery wouldn't help, I finally got rid of them until about 3 years ago when they started again. This time I pushed hard to get another MRI done and they discovered another ruptured cervical disc. However, despite waiting for over 3 years, I still haven't had the surgery and they are now starting to come back like they did before. During the 3 years I lost the surgery 3 times ALL down to some mistake in the health and support systems and now, due to yet another mistake this time by the hospital, I am denied the surgery completely.

    I am sick and tired of being pushed either backwards or sideways by a system designed to help everyone being used to only support those who are working or can go back to work quickly.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.

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