Employment and migraine

[Girlygirly2006]

I'm concerned about employment. Who would want to employ someone with chronic migraine who doesn't know when they will able to work from one day to then next or not?? I suffer with these and so far this month have had 1 pain free day !, I'm currently in ESA but they obviously want to we me back in work , but I never know when I'm going to be well .. my pain is not yet controlled by any painkillers that the docs have prescribed I'm on new drugs at the min but waiting for them to start working I'm still suffering now.. Not sure which way to turn to be honest!

[manofkent]

I have been assessed as unfit for work through chronic migraine but I do have another problem of nerve damage in my right hand and arm-even so, it took getting my MP involved before I could get the government/Atos to agree, having once passed me as fit. I put exactly the points you raise to Atos and they replied with...'We are not interested in which days you can work, we want to know if you are fit today!'

I still suffer with both things and feel it would be impossible to hold down a job, even if I could find an employer willing to take me on. I wish you well.

[daisyrose]

Which group of ESA have you been put in? I'm guessing you have been put in the Work Related Activity Group, not the Support Group. How long ago was your medical/decision letter? You can ask for a "mandatory reconsideration" within one month of the decision date, and DWP will look at the decision again, and may overturn it, and put you in the Support Group. If not, you still have the right to appeal the decision. It can get quite involved, so it is best to get help from an advice centre, such as CAB, who are experienced in dealing with ESA problems. Don't delay, as you may run out of time to appeal the decision.

You may also be eligible to apply for Personal Independence Payment (PIP), which has replaced DLA for new claimants.

Have you visited the National Migraine Clinic in London? They are very helpful, but it can be a long way to travel for some people, which may be impossible if you always have a migraine.

I suffer from migraines too, and my employer has been very helpful in allowing me to be flexible with my hours, and making adjustments at work, such as lighting levels etc. Long term conditions such as migraines are covered by disability discrimination rules, so employers need to be supportive. However, I'm not sure how easy it would be to get a job in the first place, as despite DWP finding sick and disabled people "fit for work", I don't think the government is providing enough support for employers to allow them to provide suitable work for sick and disabled workers.

[Girlygirly2006 in reply to daisyrose]

Hi it's good that your employer is providing support for you, and yes it's right that it will be hard for "us" who are struggling with illness to get back into work. To answer a few of your questions.. I have been on ESA for two months now and yes it is the work related group as I thought I would get some new Meds and I'd be ok as I was before , though this time it seems to be taking longer to get a grip on things.

To be honest CAB advised me not to apply for PIP yet, no idea why as I know migraines are classed as a disability which is correct as I personally and disabled when my attacks occur as I'm sure a lot of people are. I have applied for PIP though as I have been keeping a diary and have noticed how many "good" Days I'm actually getting out of a month and to be honest it's not even a week !! I have my appointment in the next few weeks so all I can do is wait and see what their decision is I guess. After that if ey decide I'm Fit for work well I guess I'll end up losing my job as I have in the past for the amount of "sick " days I get! , unless I find a medicine that works for me then I don't know what else I can do.

I also have my appointment with ESA next week for my support back to work so I will discuss this issue with them when I see them.

Thank you for th information I may be too late to change it though I will see next week.

Good luck to you

[manofkent in reply to Girlygirly2006]

I also found my local CAB were not much help actually. They couldn't offer any fresh advice outside of what I already knew. When I had my assessment there were things I was very unhappy about and so I asked for a copy of what had been written about me (you can do this the day after). I found several of my actual answers had been, frankly twisted or changed completely and so I put in a formal complaint. I think this helped with the eventual outcome and the person who assessed me was reprimanded as DWP agreed that some of her findings were indeed..'unsafe'. The worst 'alteration' was they logged my migraine days, which I told them were at the time, between 8 and 13 per month as...1 per week, occasionally 2.

I asked all sorts of questions like what should I do if I was placed in the work support group but couldn't make appointments due to my migraines but they wouldn't answer anything, just said...wait and see. I was reduced to living off the basic benefit for several weeks whilst I appealed and waited several more weeks for a hearing date. Eventually my MP wrote to me to tell me the appeal date had been cancelled as DWP had now agreed I was unfit for work.

Personally, following a fight to get my GP to allow me to change my meds. I now use Eletriptan rather than Zolmitriptan and my migraines have decreased somewhat. The London Migraine Clinic told me how Zomig (in fact triptans in general) can trigger rebound headaches and so sometimes cold turkey is required to break a cycle. I also take Propranolol as a prophylactic.

I have suffered migraines since age 13-I am now 63 and so that's another factor in finding a job.

I didn't intend this answer to be all about me but thought my experiences may help you? If not directly, then at least to let you know you are not alone.

Good luck x

[Girlygirly2006 in reply to manofkent]

Hi your experiences have helped as it basically seems I have the same amount of attacks too. I have been placed on neruontin tabs now as have very painful stabbing pains in my neck, though have become troublesome and doc has now arranged me to see a neurologist which I have in 2 weeks time ! Pretty quick considering. Seems my neck muscles or veins are not working as they should so he has mentioned having Botox.

Had a very scary moment yesterday and seriously thought I was having a mini stroke. I was experiencing symptoms I've never had before . Band of hotness surrounding my head, stabbing pain in left side of head, pushing sensation to left arm numbness down left arm ..but apparently this was a Migraine!,

I went to see my adviser at jobcentre who basically said she'll see me again in 5 weeks to see how I'm getting on! Not put onto support group still in working support group. Crazy considering I was ill when I saw her!

I have appointment with DWP for pip on thurs so I'll take it from there.

Good luck to you hope things get better soon.

[scarrott1971]

Hi there............

I'm David and I have had Severe Daily Chronic Migraine for 16 years. I've tried 14 drugs but PEROXATINE (Seroxat) 40mg a day has helped wonders. It's an antidepressant that is offered for those with our condition. I'm a patient at Queen Square London. This was prescribed to me by Professor Peter Goadsby (top Headache specialist). If it wasn't for these tablets I'd be totally useless. I avoid Orange Juice and Dark Chocolate as they are bad triggers for me. AVOID food that makes things worse. Hope ive helped let me know how you get on................David 43 Letchworth, Herts.

[Girlygirly2006 in reply to scarrott1971]

Thanks David I'll mention it toy doctor next time I see him. He did say to me the other day to look up a herbal medicine called riboflavin it's a b12 vitamin to see what I think of it ..I said I'll try Anything to be honest ! I would prefer to get off these chemicals but if I can't well just have to be I guess! I'll keep you posted of my progression thanks again!

[Gambit62 in reply to Girlygirly2006]

Sorry to be pedantic but riboflavin is B2 rather than B12 (cobalamin).

B6 has also been linked to helping with PMS including headaches.

Vitamins are needed by the body and found in relevant food but that doesn't necessarily mean you are absorbing or getting enough of them as you need to be eating the right foods ... and other things can go wrong.

B2 is also used as a food colouring.

I have problems absorbing B12 ... and migraine like headaches among the many symptoms of B12 deficiency.

Hope that you find some solutions and get the ESA to see sense without too much hassle.

[Girlygirly2006 in reply to Gambit62]

Hi thanks for the information, well I'm willing to try anything and to be honest I'd rather it be healthy alternative .. I will be trying e vitamins to see if it helps at all.. :/

I'm sure I'll sort ESA out seems silly when I've cancelled in them twice already due to be too ill to get there!, you,d think they would have suggested transferring me to their other option rather than keep asking to to go and see them to get me back to work!,

I guess I'll have to see them tomorrow hopefully I'll be ok as today is NOT a good day !!!

Thanks again .

[scarrott1971 in reply to Girlygirly2006]

Unfortunately there are hundreds of different types of migraine/headaches. As mant triggers too. My daughter (16) has had headache for 7 years. She is trying magnesium tablets. DO NOT worry about taking tablets if it helps. Better than suffering. How long u had em?.............how old are u?...........my daughters could be due to heavy periods.

[Girlygirly2006 in reply to scarrott1971]

Hi I've had migraines and headaches for about15 years now but they have increased over time , but these last few months have been the hardest to deal with.. I'm thinking it could be nerves in my neck to be honest as I have trouble moving my neck to the right and have to hold it in a position to relieve some of the pain in my head.. Seems to help a little .. I'm 41

[scarrott1971 in reply to Girlygirly2006]

With my migraines I have a bad neck (right side). My neck alignment is out a bit (x-rayed). I have been getting pins and needles down my right arm, so I believe I have a trapped nerve in my right shoulder, aswell. I'm over weight so starting a diet. I tend to hold my stomach in...lol....this can't help. I'm trying anything to help......I lost my job through my migraine. BUT paroxetine 40mg is helping live a near normal life..........

[Girlygirly2006 in reply to scarrott1971]

That's good news though glad something is helping someone

[CJA2012 in reply to Girlygirly2006]

I might mention this to my neurologist. They are aware of my having a car crash last year where I had arm and shoulder sprain coupled with double whiplash. I've certainly felt that a severe neck pain had aggravated a headache into a migraine. They did look for a trapped nerve but they found instead, 2 damaged spinal discs. This could also be attributable to migraine exacerbation.

[scarrott1971]

It helps BUT I have had a permanent Migraine since August 1997. I have tried more or less everything. Bar a Shunt which they were thinking about. I have considered the implant for pain nerves.

[Girlygirly2006]

Well had my appointment with the neurologist who wasn't very interested to be honest , had a 5 min chat with her and she dismissed the fact my migraines/headaches are related to my neck pain. I guess there could be some truth in that due to my migraines being consistent for many years and neck pain recent. Anyway been referred back to docs for physio. Though must say the neurontin tabs I am currently on are being helpful and keeping the neck pain under control where I just experience a burning sensation rather than not being able to move it. My headaches this month have been fewer then previous months but my migraine attacks remain the same. Hopefully this month will be better ..though at min I have flu lol ohh its swings and roundabouts !!!! Oh esa will be contacting me to see how I'm getting on in next few weeks ..

[CJA2012]

I would absolutely book an appointment to discuss these concerns with a GP, and ask for a neurology referral if you have not already had one. I just lost my job because of migraine. Your employer may be a lot more compassionate than mine. You cannot help being sick and it'c certainly not a life choice!

As I suffer from anaemia, CFS and IBS as well, I decided to put myself forward for some temping jobs in the short term. A week here, a day there, just for the money.

Changing jobs can often be a non-medicinal way of coping with chronic migraine, as you can find something with more flexible hours or something where you don't need to get up at the crack of dawn and commute to.

Hope this helps.