How do your migraines affect your work?

[skullsandponies]

I'm really interested to find out how other people cope with work being a migraine sufferer.Do people work full time and struggle on? Do you have the support of your employer? Or have you decided to go part time - or perhaps can't work because your migraines are so debilitating.

[madmandy]

hi

I was working full-time at first then my migraines got worst and I went part-time. The comments from some people within my work place was very unkind and unhelpful. I was told to ring up my self when unable to work but sometimes I lose the abilty to talk or be understood they knew this and witness it first hand.I was sent to the works occupation health who supported me and said I was doing well going in like I did.

The pressure for me to go full-time was put on me by management ,at the end I was not enjoying life with my migraine and pressure from work I was very low and self esteem went right down,After one of my attacks because of the comments I got when I phoned in sick which really did upset me .I decided to leave which my doctors felt was a good move for me and so did my family . I did enjoy the role and did have some people there who understood and supported me,but when you are down you dont see this .

I do want to return to work but at present the migraine attacks are every 7-10 days .I am hoping after a rest and getting my head straight this will stop and I can go back to another placement and do the work I enjoy..

[janjan78]

Right now I am preparing to go back to work after being off for 6 months on meds trial...(they didn't work)....but I have no idea how things will go and to be honest I'm quite apprehensive about it because of some colleagues attitudes =( I suffer from random attacks (no aura) and can have anything from 2/3/4 attacks a week I work 4on/4off can't take any other painkillers apart from sumtriptan inj.x2 per week thanks to my community hopsital loading me up with every med possible causing MOH and now I suffer daily headaches aswell =( it's going to be trial & error in working but to be honest I just can't afford not to I'll just have to phone my husband to get the car later if I can't drive home.....just hope I'll remember where I left it!!!! =D lol

[oldtrout48]

Whilst it can be challenging to hold out for -it is important to know that migraines count as a disability and are covered by the Disability discrimination act. this means that you have a duty to tell your employer about what helps and hinders - and they have a duty to make reasonable adjustments. You need to have a formal meeting with manager/HR/occ health - depnding on the size and type of employer and write out the agreed adjustments. The Migraine Trust do a fantastic info pack for employers re this

migrainetrust.org/informati...

Good luck to all.

[janjan78 in reply to oldtrout48]

This does give a great deal of info for the employer to understand how migraine may affect an employee but it is mainly aimed at someone who is "office" based and I would really struggle to get my points across as I'm care@home (look after the elderly & infirm in their own homes) I have however kept my employer up-to-date on how things are with me & what stage of "treatment/medication" i'm at & with both them & my GP's help we're at the stage of trial back at work without meds just to see how things go.......I have a lot of worries naturally with things like my husband works & can't just drop things to come & drive me home during an attack....what happens then??? eeeeek!!! but I can't stay off work any longer fiancially as my work policy is that after 6months I drop to half pay so I need to be back at work now so we'll just have to cross every bridge as we come to them I guess & just pray nothing happens!!!! =D watch this space on friday!!! =D lol

[oldtrout48 in reply to janjan78]

That sounds difficult to manage as that sort of work would be tricky if you have to move and bend etc from the pain and nausea point of view. Back in 2007/08 I was at the 3 or 4 migraines a week point and constant headache, loads of medication and spending most of my time at home in bed. At that time I tried Sodium valporate for 18/12 which worked to reduce them to about 2 or 3 a month but has side effects not least of which it ruined my hair! So i went to The National migraine clinic and i weaned off them over about 6 months. Trouble is I've had other health problems since so the picture is unclear now. . I'm about to run out of full pay after 6 months off after surgery and a heart problem so i do understand the pressure to get back -trouble is the tension you feel about the situation is a recipe for migraine isn't it! I'm sure you've thought of it but try to reduce everything else for a few weeks -you know meals from the freezer, skip the housework - or delegate! - and look after yourself.

[janjan78 in reply to oldtrout48]

Well I have to say work has been very good -so far!! but I have a feeling it's because they are so short staffed that any help is better than nothing!! =D lol but they have made a temporary rota for me where I'm not "doubled up" with any other member of staff so that if I do go off sick then it's not mucking up the rota too much & the clients that are urgent get seen to by the healthy carers & not by me lol but hubby & son are ace & we split evrything as fairly as poss......even my dog is a wee sweety when i'm not great he comes & keeps me company cuddled up on couch or when i'm being sick he licks my nose!!!! =D lol but on a serious note I'm not sure how things will go for me workwise as I understand this is a temporary thing to see how things go & I really don't know what i'll do if this doesn't work as I can't afford not to work but what else is there for me??? If they medically pay me off or whatever it is they can do then how do I get another job cause they always ask why did you leave your previous job? they will then see that & not even consider me even though I may be ideal for that position =( I do have a feeling there's more to my migraines and i'm on a few other HU forums trying to dig out my answers as I believe my APS is at the root of it all & think I've had a flare up leading to lupus that my GP & Neuro team haven't yet connected the dots but will maybe get there eventually.....ho-hum!!!! =) lol

[oldtrout48 in reply to janjan78]

Well done so far -just take it as it comes for now -You are right about other health problems being inter-related - I was tested last year for lupus -but cardiologist considering POTS now (postural orthostatic tachycardia syndrome) mind you -that hasn't caused my migraines - just makes them worse!

[JanetCrewe]

If I didn't have Sumatripan sprays (they are the only thing that has worked for me) I would be out of action for about 2 days a week. I don't think colleagues at work realise the affect migraines can have on sufferers, and one of the major things is low self esteem because of the uncertainty and severity of the attacks. I can remember going to places for work and making plans that if I had an attack how would I get back home. I do anything to make sure that nobody in work knows when I am suffering although the colour in my face drains and my concentration goes. Without Sumatripan I would not be able to work, so would recommend this to try. I had to go back to my Doctor a number of times before I was prescribed it, as the main problem is that when I was well enough to go to the Doctor, I looked well and he probably didn't realise how much I suffered.

[skullsandponies]

Some really interesting answers - it's horrible how it affects people. I've suffered with migraines for 8 years and for most of that worked full time. If I got an attack I'd just take a triptan and if it didn't work fight through it and collapse when I got home (or go home sick if it was too bad).

At my last job just before I left I went part time for 3 months doing 3 days a week and it made such a difference! Then 8 months ago I got a new job (full time with longer hours as I do 40 hour weeks now rather than 37.5). At first it was ok - I'd been taking new preventatives but then in February this year I had my worst ever month with 19 attacks. 5 months in my new job and I'd had 8 sick days and spent most days fighting off a migraine or just trying to get through the day.

I ended up going to the National Migraine Centre (who are amazing!!!) and discovered I had Medication Overuse Headache from taking too many triptans. As a result I had to go cold turkey for 6 weeks off them. Instead of getting signed off full time - I decided to ask my employer if i could go part time. The doctor gave me a "recommendation" sick note and my employer agreed. In fact they were really supportive. For the first time in my life I've been completely upfront about my migraines and it is terrifying.

I've just asked if I can go permanently part time (doing 4 days and having a midweek break). Yet to have a meeting to discuss but I know it will help masses. Hopefully they'll agree. I understand they are a business and not a charity - but I'm hoping this strategy will mean I'm more "well" the majority of the time and as a result do a better job. That's the problem with migraines though isnt it - it's not just the attacks. It's managing them, managing the side effects and the general just feeling awful!

I spoke to the advocacy service through the migraine trust who sent me loads of info which is really useful.

Employers need to make reasonal adjustments - so things like flexi time or flexible hours and not being penalised for lots of sick days can help take the pressure off a bit.

I'm arming myself with info to help my case. Fingers crossed!

[oldtrout48 in reply to skullsandponies]

Hi - I work 20.5 hours over 4 short days with Weds off - the mid week break makes a big difference. I used to work full time, even when my son was little but i don't recall life being very enjoyable. I've had migraines since i was 6 - now 48 so plenty of time to get used to them! I used to get them weekly at school and more frequently at uni - though not surprising!. Unfortunately they have got worse perimenopausally - so I'm waiting to see if they go away after the menopause!! HA, ha I wish! My employer -the NHS - has been ok once i stood up and shouted about my needs - but i do find with every management or structure change, i have to fight my corner again which gets stressful!

[VictoriaS]

I've had migraines for nearly 14 years now and am currently on Employment & Support Allowance which I find deeply embarrassing but feel I can share you with lot! I'm also pretty sure I only qualified because I also have a 'physical' aspect with neck/spine damage - though I know other migraineurs with severe vertigo etc have qualified for ESA. A year ago I had to give up the part time job I was doing as I couldn't even manage that and at the moment am just focusing on trying to get as stable as I can, then hopefully I can slowly get back into part time work. I recently updated my Linked In profile and debated whether or not to include a link to the Migraine Blog I write....as I didn't want future employers to dismiss me as 'unreliable' or 'incapable of hard work'... (I'm a Writer so in the end I did add it after discussions with my family but if I was a Lawyer or Head Hunter I probably wouldn't have.)

I'd like to thank Skulls and Ponies for the useful information she's highlighted above. The Migraine Trust now have an Advocacy and Policies service, run by a delightful lady called Hannah, who does nothing but give great advice on migraines in the workplace and how to handle this difficult situation. Plus she can also help with how to handle tricky GP's and getting referrals. I've also found The National Migraine Centre also give good advice on these topics.

It's so tough constantly having to fight our corner and to fight the common myths and misconceptions surrounding migraine. But I've found it very useful to compare migraine to epilepsy (which they're discovering have quite a lot in common) as that does get people to think of migraines in a different light....a little bit. And hopefully by being upfront about our needs and rights we'll get there in the end (yes, I live in a cloud of eternal optimism)

[manofkent in reply to VictoriaS]

I was interested to read this as I have been unable to work through my migraines and another physical problem. I am currently about to be assessed for the new ESA and have real worries that they won't understand my circumstances and I won't qualify-they have said that I may need to go for a health and work related check and that also concerns me, how can anybody assess the amount of migraines and their affects by looking at somebody?

My GP has told me that it's not that I'm completely unable to work, more that how would anybody want to employ me when I never know when or how bad my next attack is likely to be? I currently have somewhere between 8-13 per month and then as you'll know, a great deal of days in-between where I feel bad! I've suffered since I was around 12 (I'm now 61) and tried most things available.

[VictoriaS in reply to manofkent]

Hi, totally understand, it's very difficult but do-able if you do a lot of research and are clear - this is the ESA and the rather stressful Work Capability Assessment which I hope will soon be a thing of the past. The Migraine Trust can give you some good advice on guidelines for employers - they have a free information and advocacy line & employ an advocacy manager, Hannah, who is really lovely to try and help people like yourself so you may want to give her a ring. The number is available on the Migraine Trust website - plus they have a really great pack with lots of great information which you can now download too.

[mustajabak in reply to VictoriaS]

Hay VictoriaS, nothing to be embarrassed about, sometime life offers you lemons only and if you are brave, you can make lemonade (Tasty drink) out of it LOL.

Best of luck and be brave and don't let these things bother you a bit, I am suffering for the last 18 years with cluster headache and I get any help available in shape of moral, financial or emotional.

[howdy_theresa]

I work for a small company and due to my husband's work I had to move out of state and they let me work from home which was the best decision I could have ever made. I still work 40 hours a week, but if I'm having a bad migraine day I can take it slow and make up my hours when I am feeling more up to it later in the day/week. Thankfully I work a desk job and have been able to control my office environment enough to control as many triggers as possible.

Good for you for taking control of your situation and asking for a solution that will work best for both you and your employer! Good luck!

[Paulacg]

I was working full time in a frontline health service job and studying at the same time for the first 3 years. I was constantly in pain and exhausted, but managed two years with no sick leave. I didn't want to despite my GP, the migraine specialist and occupational health nurse telling me I should cut my hours, but I have now gone down to four days and have finished the studying.

[teadrinker]

I work part time (though not because of the migraines). I remember worrying about having to tell occupational health before starting my current job - "Do you get headaches or migraine?" was one of the top questions. I emphasized the fact that I rarely take time off. When they did talk to me about it they weren't that interested.

My boss and immediate colleagues are supportive, and I am not the only one who suffers, so that helps. I've only had to go home mid-attack a couple of times. I have to drive a fair bit and occasionally have had to turn round and go back to the office.

I think I worry about what other people will think, and as a result feel that if I'm having a bad day or going through the aura at work I've got to put in more effort on a good day to make up for it. I'm not very good at taking it easy and tend to work on if I'm not feeling well, and as a result my work is slow.

I used to not tell anyone if I had an attack coming but I let my colleagues know now. I don't want sympathy but I feel they need an explanation for my soggy brain, and I have needed some basic first aid on occasions. I keep spare medication at work, very important.

If I've had a migraine on a work day I make sure the next day off I have is as quiet and relaxing as possible - otherwise I end up having another one that week. I've been offered the chance to work more hours and take a promotion- it's tempting, but my health is more important at the moment.

[katya2]

Hi, I am 56 and have had migraine since I was 30. I was working fulltime when they started in a research post. I went part time and freelance 2 years later. Since then I have worked an average of 3-4 days a week, from home with flexible hours to suit my lifestyle. My work involves a lot of travel to varied locations - enjoyable but not great for a migraine sufferer. I generally take sumatriptan with me which will get me home if need be. But my migraines tend to come after I get home when I relax so I am rarely caught "on duty".

I find that the extra day a week in which to do nothing is critical to keep me in good health - which for me means 1 migraine a month. I have always been in work, but the pension arrangements are lousy and as I get older I am finding that it is more and more difficult to do even the 4 days a week and that I have no stamina to cope with things like elderly parents. Does anyone else have views on ageing and migraine - my Mum's migraines stopped with the menopause but no such luck for me.

[Heywhatsup]

Hi,

I am young adult (under 25) old suffering from migraines at the moment. It comes quite frequently about 3 or 4 times a week but I recently suffered from a severe one which each time I tilted my head I would receive the headache reaction. Now this is getting really annoying and I am on Half Inderal 80mg. I am also working full time a week (37.5 hours weekly) Each time I come home I have a slight headache but I have never had headache liek this before work. I am taking my meds everyday and still is not changing anything. Can anyone suggest to me what's best action to take I can't seem to be always having days off from work as sick as it doesn't sound too good so is it worth reducing my hours? please advise.

Ps: I have had my blood test which looks normal, also had MRI scan that has come back as OK.

Thank you

[Monkey22]

I have just canceled a late shift working in a hospital due to a recurring migraine attack! I cancelled a shift last week due to a migraine! I work part time now as recommended by The Migraine Clinic in London.

I still get migraines part time! I feel guilty for counciling work short notice! I take imigran tablets. It works most of the time, but leaves me feeling drowsy and tired and I go straight to bed in a dark room and sleep it off.

I'm worried about my job and I do not think staff I work with understand or care,itccauses me

[teadrinker in reply to Monkey22]

I know what you mean about the guilt and the lack of understanding. I've had 3 attacks in the past 2 weeks and have worked through parts of all of them. A colleague had a bad migraine this week and went home straight away- they get one attack once in a bue moon so this was hardly a problem, but if I took a day off each time it happened I would be disciplined over the amount of sick leave taken - such is the way the NHS treats its own.

I am on annual leave now, and have had a lazy day, and I haven't had to pretend to be OK, and it's been lovely!

[nabingurung]

hello this is me nabin,

i feel very nervous and sad while communicating with people ,and i want lonely why this is happening for me .could you please help me,

[genrefeem in reply to nabingurung]

Nabin, what is happening to you?

[Janine61]

Tried part time still couldn’t cope so lost my job. No financial help as apparently you can recover from migraine and work again?! 5 years later still unable to work. Mine was caused by an accident whilst working at a school but no compensation as they can choose whether or not to have insurance??!!

[Mfsjds]

I worked opposite my boss and after a while he recognised the symptoms before me, eg excessive yawning, facial features etc so he knew I wasn’t faking it.

Only problem was I kept triggering “no more than three separate days off in six months”. Eventually HR said the only way they could get round this was to register me on their system as “disabled”.

However didn’t get to that point as left for another job. Once I had officially got the job I wrote to my new boss before starting, to explain how I can ring in morning and say I was ill and couldn’t come in and be back the next day appearing ok ( my migraines usually lasted 24 hours of horrendous pain and sickness) as didn’t want them to think I was skiving! Anyway that seemed to work as HR were notified.