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Chronic migraine

sunflowersunflower CourageousPosts: 33Member Courageous
edited April 2018 in Dealing with chronic pain
Hi I've read some of the messages regarding chronic migraine. I'm struggling. I'm a primary school teacher. Had 6 months off already. Now on half pay. Single mum to 2 children under 16. No likelihood of a return to work so talk of possible early retirement but that is impossible to get on ill health grounds as a teacher. I struggle everyday. The gp can see it. I'm going back to see the neurologist, as the combination of topirimate and rizatriptan is not really having much impact. I can't see a way out of this, my migraines roll into one and and soon as I come up for air I get a day of respite then they come again. Does anyone else have a life like this?  My poor kids have lost their mum. As for my finances, I am truly worried. How can I think straight when I am in pain most of the time?  
Any advice would be gratefully received.  I have contacted the bank, am going to CAB and my teaching union are involved.

Replies

  • Sam_ScopeSam_Scope Scope community team Posts: 7,647Administrator Scope community team
    Hi @sunflower
    Welcome to the community, they discussed migraines on This Morning recently and they have put together a list of helplines and websites for chronic migraines that might help.

    It sounds like a really tough time for you, it is good to hear that your GP is taking it seriously and I hope your neurologist can offer more support.

    Well done on getting in touch with CAB and your union, I hope they can offer you help.
    Scope
    Senior online community officer
  • sandyp196sandyp196 Pioneering Posts: 132Member Pioneering
    Hi I also suffer from chronic migraine and have in the past lost jobs through migraine. Iv suffered since I was a child. My migraines are more severe now than they ever were and very unpredictable too. But still not as bad your situation.  I do get clear days.  I don't know much about benefits but I do know the medical profession are rolling out a new trial treatment for migraine. They claim it cures migraine. Iv asked to be on the trial. But it started in February and I haven't heard anything so guess I'm not on the trial. 
    It's worth asking your doctor about it though. Having a job and two small children might qualify you for the trial more than me. 
    I remember when the naratriptans fiRST came on the scene. They changed my life. For he first time since I was a child I had a medication that worked. I'm still on naratriptan 20 years later. It's not so effective now but it does still work - eventually. 
    But after so many years being on naratriptan it has affected my blood vessels in my hands and feet. Not massively or seriously. But it's worrying and uncomfortabe. 
    I hope you find a solution. The struggle is real. Migraine is very disabling and can seriously affect a persons quality of life.    
  • sunflowersunflower Courageous Posts: 33Member Courageous
    Thank you both. I have looked on migraine trust website but the this morning page had a couple of places I hadn't found yet, so that's really good to know.
    I'm just so desperate. I filled in an online benefits assessment. Right at this moment I'm in a unique situation and I think I slip between the cracks. I earned too much until quite recently, being a teacher have a good pension, but I can't work.
    I don't want to come on here and sound self pitying, because I'm not, pre sick leave I was a strong independent woman. I just feel the cards are stacked against me. 
    But thank you for your advice. It helps.
  • Sam_ScopeSam_Scope Scope community team Posts: 7,647Administrator Scope community team
    You don't sound self pitying @sunflower at all, it sounds like a really tough situation.

    There is a PIP self test you could try here
    Scope
    Senior online community officer
  • sunflowersunflower Courageous Posts: 33Member Courageous
    Thanks @Sam_Scope I've heard about the PIP and been recommended to try it. It's having a clear enough head to do it!  Do I think about how I am now, or during an attack, on meds or off meds, good days or bad days?
    This site has given me more support in a few days than others have in months. Thank you.
  • sunflowersunflower Courageous Posts: 33Member Courageous
    Hi @Sam_Scope do people with chronic migraine get awarded pip payments? I filled in the form and it says I am eligible, but my condition is so unpredictable there is no typical day. So one day I might be able to make a meal the next 3 I might barely move. 
  • Sam_ScopeSam_Scope Scope community team Posts: 7,647Administrator Scope community team
    PIP isnt about the condition but how it affects you, it can be tougher with conditions that fluctuate but it is still possible.

    The best thing you can do with applying for PIP is getting as much evidence as possible, so letters from your doctor, the neurologist etc.

    There is a great guide on the CAB site about filling in your PIP form and so many of our members have had experience of filling in the forms so if you do decide to try then do ask any questions you may have.
    Scope
    Senior online community officer
  • Sam_ScopeSam_Scope Scope community team Posts: 7,647Administrator Scope community team
    There is information here about fluctuating conditions and PIP on this site too.

    How is a fluctuating or variable condition taken into account for personal independence payment (PIP)?

    For the purposes of personal independence payment (PIP), you should score points for the descriptor that applies to you for the majority of the time, though this will depend to a large extent on the opinion of the medical assessor.  

    Guidance issued by the DWP says that your ability should be measured over a period of twelve months.  So , if you would be unable to complete a descriptor for more than six months out of twelve then you should score points for it.

    Where your condition fluctuates so much that you could meet several different descriptors over the course of a year, you will score points for the one that would apply for the greatest proportion of the time.

    Scope
    Senior online community officer
  • sunflowersunflower Courageous Posts: 33Member Courageous
    Many thanks. I looked at the section on here about pip and saw some really useful info. It's tricky when you can't really think clearly, to sift through lots of info to find precisely what you need. Your signposts today have been a huge help as today is a pain building kind of day. 
    Huge thanks
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