How do you make it through work?

Hello all

I feel so demotivated and stressed at the moment. I took 3 weeks off work to come off painkillers and felt I relaly made progress in week 2, where I had some pain free days where I didn't have to think about a headache at all. Anyway week 3 came along and the headaches started creeping back at the end of the week, then when I went back to work that was it I was right back where I started. So now I am back on the painkillers because I can't get through a work day without them.

There appears to be a pattern where the headache starts coming on about lunch time 1pm then will slowly get worse until developed into a migraine in an hour or 2. I am struggling to cope with it and can see the only solution is to continue with the tablets until I have the occipital nerve block. I can't get through the day without them at work. I work in an office and have to stare at a screen all day and work with spreadsheets.

I was so pleased to be feeling in better in my second week off work and now I am right back where I started. I do not know why this has happened, it seems work could be the trigger but I don't know why. Sometimes I get a bit stressed and I do find my job very boring and am trying to find something not involving screens and sitting for ages but apart from that it is ok. I dont understand why its happening and am getting really upset about it all.

How do you get through your working day?

Thanks

oh poppet - I am sorry to read that - you were doing so well...... starting the cycle again........... it does show that if you are away from work you can be better

What are the lights like? the smells? Could just be the screen - do you hav eone of those anti glare covers?

If I am honest I have no idea how anyone can work with this.........so i hope some of the others have some tips xx

Tee wrote:oh poppet - I am sorry to read that - you were doing so well...... starting the cycle again........... it does show that if you are away from work you can be better

What are the lights like? the smells? Could just be the screen - do you hav eone of those anti glare covers?

If I am honest I have no idea how anyone can work with this.........so i hope some of the others have some tips xx

It does but I have to work as I need the money so not working isn't an option for me. I hope perhaps a change of job will help me, I don't think I am cut out for the office grind and the migranes did increase in frequency when I started full time Computing work after I graduated.

I have some anti glare glasses which seem to help a little bit. I think because it is a job involving quite intense concentration it is quite difficult. I thought maybe Im clenching my jaw at night so next thing is a mouth guard, i'll try that it is a bit random but worth a shot. Think it is just the constant staring at a screen that is getting to me. I see ok for an hour or 2 but after that it's too much.

Don't you work anymore?

So sorry to hear that you had to go back on the painkillers! This post could have been written by me a few months ago! I also had to take time off of work to go off the painkillers, but then it was back to popping them like breath mints when I went back to work.
To be honest, I have nothing helpful to say, only that I've been there, too! I lost my job 4 months ago due to the migraines, so if you find anything that helps, share!!
Good luck!!!

No is the short answer - I have not been back to work since my very big stroke/HM almost 6 years ago now.

I do have an amazing employer and my job is still open for me - and maybe one day I will return........... the problem I have is that I can trigger quickly and over stimui does it - I am never out of a migraine state - its just the levels that change - if I keep to my 'management plan' I can keep it at a nice level 2...

I wish there was an easy answer to this.... I know of a few who have faced the decision to change or give up and to be honest once they have done it they do feel better, but it is not easy.

xx

Working with Migraine really is tough, especially when it becomes chronic or daily. I was so shocked to discover that Chronic Migraine is rated by the WHO as a disability in the same level as dementia, acute psychosis and quadriplegia it really is nothing to take lightly.

Three weeks is not a long time to try and deal with Chronic Migraine especially if it is complicated with rebound headache and so on. My neurologist told me it takes at least 6 months of medication and rest.

I have recently started seeing a neurologist and also been successful in getting disability benefits (for a period of time at least) and I am grateful for that because currently I am not able to work at all, it just isn't possible for me. Even if and when my condition improves I still think that full time work will probaly never be an option for me and I will need to watch the kind of work I choose because compared to most people I have a very sensitive central nervous system that cannot take the same level of stress and stimuli that others take in their stride.

I do appreciate you need money but your health needs to come first and I know that as I have got older my threshhold for migraine has gone down and down and that seems to be true for most.

Please take care of yourself first!

Best wishes x

Hiya, I sooooo know how you feel, I am still trying to find a balance between work and my health. I had 9 months off after my stroke last year and went back to work in Sept before I was diagnosed with Hemiplegic Migraines. I strted off very gradually just 2hrs each day and I have built my hours upto 30hrs/wk now. However I really struggle. My employer has been very understanding and at the moment if I feel really rough with a migraine he lets me go home early. However I am beginning to realise that working on screens and the phone in a competitive recruitment environment is probably a trigger to my Migraines! I love my job and I have to work like yourself because I need to support my family.Work do expect me to evntually work fulltime and I am beginning to think that that just won't happen but I am taking a step at a time and ensuring that I fill my boss in with regards to my Migraines, referrals, patterns etc. I have also involved HR.

I know I do a good job but at what cost? I am not ready to give up but I will need to find a balance soon since my Migrianes are not improving.
Will work allow you to work part time? can you set up an agreement that when you have migraine you go home i.e lunch time and make up the time another day that week?
I have regular breaks from the screen-make a round of tea for my colleagues and even though I don't smoke since smokers are allowed aquick fag break, I also pop out side for a few minutes when need be for fresh air and break from the phones and screens-is that an option for you?
I haven't found the answer yet but I am trying everything possible since I need this job. I hope you manage to work out the best option for you.Keep posting since it would be helpful to know how you are doing. All the best.

I did it for 3 years and were as I can give you a load of suggestions that can help a little, I'm currently on ESA and applying for DLA after I pretty much worked my self in the A&E lots, so be really careful were you keep the line between needing money your health, I thought I was on top of it for ages and then I got to the point I was having 12 day migraines lol!

Blue tint screens? Also if you can touch type, I spend a while typing and looking at the wall. And make sure at lunch time I went out side for at least 10 minutes and walked, it really helped a little.

Migraine is a classified disability now, you said office type so if its big company office 2 things happen with that, some offices get terrified you will sue them if they don't do what you say, others help. I had sanction "microbreaks" which if it started getting sore I could just go and sit in a dark room.

I also had the lights above my desk altered.

The big thing in my office was cold, I kept complaining about it but it took them sending me to occupational health for too much absence before they didn't have a choice but to listen to to the fact cold was one of my big triggers.

With pain killers, I take Tramadol, which can be taken when you have pain but also as a preventative of pain as it build up in you system, I'm on 8 a day. Now I really don't recommend it... but that kind of what it takes for me to function lol....

Well, I've just finished work and feel a migraine coming on!!

Not had one for AGES so I'm not looking forward to this. Currently experiencing a blind spot, searing pain and tooth ache on my left hand side. Feels like a red hot poker through my eyes. Glad I don't get these anywhere near as often as I used to!

Time to get home and sleep

Hope it passes quick Pav x

I am finding its either to big companies or those with bosses who have migs that are happy to make changes ie ban scent - change light bulbs.

Migraine Trust are running a campaign at the moment for more work awareness ....

Thats good at least, the managers in my office didn't really know what to do about it an tried to shove me out door via occ health. Gave them a shock! Lucky for me with AXA at least they have like a health check thing when you start working with them, which point I told them about the migraines and they made me speak to a nurse about my CAT scans so they had basically screwed themselves from point one on that!

As soon as you act like a mouse or seem cowed by the fact they wont do something to help you, they leap on it and before you know it you're doing stuff to make your condition less of a burden on them rather than on you. Not a position you want to get in really, managed that in my old job!

A LOT of people at my work get migraines and mine only started when I started working there! The classroom I used to work in had a carbon monoxide issue many years ago and that was sorted but it's interesting that all us migraineurs mainly work above the old boiler!
I decided to go part time having had a 7mth migrain and several major collapses and trips to hospital before I was actually diagnosed. I am now working in a different room but still getting the migraines though not nearly as severely. I can't really afford to be part time so I have that stress but am enjoying expanding old interests and being out in the fresh air more.
My employer is not sympathetic to any kind of illness! A colleague of mine has had a heart attack followed a year later by emboli in both lungs (he's 37!) and the way he's been treated has been atrocious so you can imagine what us headachy people get treated like!

Oh that is not good poor man......

What lights do they have in the school - my sons cannot sit under them and wears sunglasses in the class room - just a thought??

The boiler is interesting......

Whatsername,

I don't know your history - but you mention the mig comes on about lunchtime. Mine often starts to get worse around 10:30am. Is not eating a trigger for you? It is for me. I really need a good breakfast, healthy mid-morning snacks, a good lunch and afternoon snacks in an effort to keep the headache level down. Really - I graze all day - and my waistline shows it, but if I don't eat I feel bad. Also, I often work with the overhead florescent lights out and the window blinds closed. I just use one small incandescent lamp. People in the office know I can't tolerate artificial fragrance and are sympathetic so that trigger has been reduced. I tell you though, there are those times where my ability to focus is so limited. I'm ashamed, but during those times I'm really just there in body only - not much work is going on.

Ah yes, being there in body - sometimes that's all you can do though. My sympathies. I've just been through a disciplinary hearing because of my absence levels. I'm still at work but can't guarantee I'll not be off again. Can anyone?

Sister what do you do? and where are you?

In the UK migraine is covered by the disability act now... and your HR department should know about that....

I'm in the uk and HR do know, I have union representation. As this is a public forum I'll keep my public posts a little bit cryptic!

I nearly lost my job last year that on top of it being my return from maternity leave AND PTK laser operation on my eye. not good times. This is working for the county council, having had Occupational Health involved. I could have named a fair few colleagues who had more ACTUAL time off sick than me but due to the episodic nature of migraines I would have 1 day here, 1/2 day there. 17 days in total over the course of a year where 10 of those were planned recovery time after my eye operation (where actually I was advised 4 weeks but only took 2 weeks).

I ended up having to put my daughter in full time nursery as the only other job I could get (before getting fired) would be full time. we are running a very tight ship and have no choice about me working. My migraines are starting to creep up again from a comfortable 3 per month (these are just the severe ones where I take sumatriptans - not counting the general headaches which wold probably hurt non-migraineurs enough to stay at home.). I am seeing my neurologist on monday and I am not quite sure what I will be asking for but at the moment I think I will be asking for anti-depressant on top of my preventative as my mental health is failing.

I am allowed on a migraine morning or late afternoon (often go to bed with one brewing which wakes me up about 5-6am) to come in later/leave early and make the time up - however I can feel I am starting to stress about how I can make the latest -8 hours back when I am already not having a lunch break and starting early most mornings so I can pick my daughter up early one day a week. As if it wasnt bad enough suffering chronic migraine on its own - without the fear of losing your job, the guilt of spending all your 'good energy' on keeping your job leaving your husband and daughter with the husk.

Oh well. Upwards and onwards....
Lots of sympathy to all of you workers battling the attendance management policy.

Miyah - you may want to have a look at the anti Ds mentioned on here before you go as some of them help with migs too.... might as well try one with a double hit - if they work for you ...


But I have to say I do admire all you guys who work with this - I did at one time long to go back - but realise now that that is a pipe dream....

I do hope the doc is able to give you something xx

Thank you Tee - I am hoping my neurologist will be on the ball in terms of anti dep.that covers all areas. I am wise enough not to get my hopes up but I would love if I could be lifted out of the oh so dark lightning bolt depressions which strike out of seemingly nowhere and really are frightening (much more than the physical pain of migraines).

Watch this space!

Hey Miyah, I feel your pain. I've not been off work since I started my new nasal spray triptans, but man it's rough sometimes. I'm fortunate enough not to have to stress about other things though as I only have feline dependants.

I'ge just changed preventative meds and have no idea how I'm going to remain conscious at work as they make me want to sleep.

Solidarity with all the working migraineurs here.

Thank you Sister - I love this forum so much. Solidarity all the way!

It can be very scary and isolating suffering with chronic migraines - esepcially since there is so little awareness/understanding.

Today I had funny looks because I was off yesterday (this weather really got me - high humidity, air pressure - storm finally coming our way and I can feel it - hopefully we will get thunder so my head will get some respite) and today I came in looking fab full of energy - I had 'ecstatic manic day after a big migraine' feeling - I felt like I could take on the world. You can feel they have that 'ooh she was off yesterday on the nice sunny day - what a coincidence - if only they knew that all curtains were drawn as I coudnt bear the sharp sharp light and my daughter was a real pickle because she was bored and I couldnt tae her to the playground so she could let off some steam. Yup real fantastic day for me thanks!!!

Had all these plans for baking or knitting tonight after Mia (my daughter) had gone off to sleep and instead I lay next to her (curled up on her little bed) and listened to her breathing and could feel that exactly that place at that time was the best place for me to be. Feeling serene I went into my own bedroom to find a hair/grass ball cat puke thing on the duvet. Nice!!! so from serene to stripping the bed and then I got 3 cats in desperate need of TLC due to the incoming storm (has such an effect on everyone!! man, beast and migraine!!)

so yet again I didn't get to do something for myself that I fancied however the ecstatic (bordering on manic feelings today) gave me a moment of realisation (despite my head thumping for days now...) I will stop looking for a cure - I will look at little ways to tweak my medication and my lifestyle as a life long process to make it as comfortable as possible. Feels like a healthy idea to adopt.

I am still in two minds about jumping from pregabalin to topimirate. Think I will stay on pregabalin and see what happens when antidepressants come on top. Nasal spray triptans - never tried it - how are you finding that compared to the pill form (less side effects and heart racing out of chest cavity?)

My GP (as a cost saving exercise) switched me from the fast acting ones (imigran radis) to a normal 50mg sumatriptan and I have never felt rougher. it cost me 4 days in bed rather than 4 hours. NOT GOOD. So I am intrigued about the spray.

Lots of good thoughts to all xxxxxx

PS: not sure what the side effect of anti-D's are when you start up on them but am starting to feel run into the ground and wondered whether it would be worth getting signed off for a week or two just to relax and give my head a rest? not really a big fan of it and haven't been off for more than 1 day at the time (and only 2 days of sick with flu in the last 9 months which I am really pleased about) - I always feel like I am skiving I think it is the years of mistrust and badly handled absence in the past? I hate that feeling.

Hi Miyah, no time to respond properly just now, but the nasal spray zomig is the best treatment I've had for my migraines. Don't feel strangled or on the verge of death, the migraine just backs off.

Miyah - "wondered whether it would be worth getting signed off for a week or two just to relax and give my head a rest". Do you have any vacation time you could use? No one should think poorly of you for taking annual leave.

I've been getting so little done at work in the last 3 or 4 weeks. I've had extreme brain fog. I'm feeling so guilty about my lack of productivity. I've been thinking of taking a week of my vacation time just to stay home. Just to rest and do some things around the house I haven't been able to get to with this chronic crap. I moved into my place in January and still haven't finished unpacking or hung anything on the walls. I've always loved to travel (as an aside since many of you are in the U.K. - years ago I spent four months in Great Britain and loved it). I was saving my vacation time take a trip or to go see family in Virginia, but I just don't have the energy to pack and plan. I hope my travel days aren't over completely - but until I find a doc who can help me manage this chronic stuff, travel and visiting family may just have to wait. I would love to rest with a change of scenery though. But a staycation may be the thing.

Well it is Saturday and I'm hoping for a decent day. Have lunch planned with my mother. Hope ya'll all have a decent day too.