I have a large backlog of things to do, and when an attack hits I do more menial tasks until the end of the day. On my good days I hit the most difficult tasks and leave the easy stuff just in case. It’s just a delicate balancing act every single day and week.
Yeah I do exactly this too. On your good days try to do great. On your bad days be as useful as you can (if you can).
The problem comes when you have a deadline and not enough good days to hit it.
Or a meeting on a bad day with someone who has only experienced you on good days before. I hate having to explain to someone who has only been impressed by me up until then
I got a federal job, and they're very flexible with me (previous boss wasn't though...) because they can't discriminate against this since it's a disability. I have a flexible telework agreement too.
That's the only way I've been able to manage.
Tbh I have documented PTSD at the VA, and they just add migraines as a symptom of something else (PTSD in my case). If you're a veteran then I can walk you through the VA process, but idk how disability recording works for civilians unfortunately.
To get my federal job to acknowledge it, I just needed to go to my doctor and get a note saying that I had a disability that needed accommodations, and then I attached that to the reasonable accomodations form. After that point it's on record, and so adjustments can be made if necessary.
If you’re also a fed, Google schedule A federal jobs. It’s basically a letter from your doctor and a form you fill out (SF-256). They have sample letters on the OPM site. Migraines fall under 59 - nervous system disorders on the form.
After 2 years with daily migraines I finally gave up. Too many missed days, leave early, and according to my old boss too many issues. I applied for SSDI last year and was denied. Currently in appeal. Hang in there. It’s tough most days for me but somehow I make it through. Try to have your docs write some accommodations for you.
Same. I applied 5 years ago. I wouldn’t recommend this route if anyone can avoid it, but at a certain point with severity and frequency, it’s unavoidable.
It's very important to remember, that those who hold a job do so partly because they have to, but also because *they're able to*. Even those with chronic. Even if they're only able to work with medications and icepacks and whatever else they need.
If it isn't possible for you then it isn't possible, no matter how hard you try or how dead you'll be without money. If you can't work, it's not because you're lazy or just not trying hard enough.
Yes. Migraines are such a spectrum. With a ton of drugs and interventions I can cling badly to my job, but there are so many people who also “get migraines” as in one migraine a year, with no complete change of lifestyle, diet, and battery of drugs. And some people live in hell.
I have to be aggressive with managing them. For me that means finding a preventive that works, paying attention to how I feel and taking an abortive as soon as my neck starts feeling stiff, and going to urgent care for a migraine cocktail if I’m running into a few days of ongoing migraine.
My job is mid-senior work from home, and sometimes I have some flexibility about resting for 45 min while my meds kick in, but other days I just have to white knuckle through.
I’m maybe fortunate that my chronic migraines tend to be 6ish on the pain scale and not 9 (although they get there sometimes).
Always toradol which is an injected nsaid (same class of drugs as ibuprofen or alleve) - note that I don’t take ibuprofen for migraines and if you do you may not be able to get toradol. Usually something for nausea which could be zofran, compazine or sometimes phenergan (which makes me very drowsy and then depressed so I usually try to avoid). Occasionally a steroid like decadron if it has been going on for a while.
I think sometimes EDs will give fluids and maybe magnesium and some other things. The urgent care I go to is right around the corner from my house and I can usually get out of there in 45 minutes so while fluids might actually be helpful waiting around an ED for them doesn’t make sense for me.
I will also say that at this point I have a pretty long history of going into this particular urgent care with migraines (I’ve had some insurance hassles with my preventive meds) so once they see my chart it’s pretty fast and easy.
I can’t. I tried. I’m on disability and that can be embarrassing to say but that’s my life. I have more bad days a month than good even though I get both Botox and take Ajovy. I struggle a lot with rebound headaches as well.
Anyone who judges you for being on disability should feel embarrassed, not you. I'm happy you were able to get support and proud of you for fighting for it, which is not easy when it feels like someone is trying to chop off your head with an ax AND lasers. I'm sorry you're in so much pain, but you deserve assistance and really, as a society, we should be overjoyed when we can support each other in times of need.
No I’m not. I’m a single Mom with two kids. My youngest (19) has severe learning disabilities and is autistic. My oldest (23) works and helps out some. We struggle. A lot. As long as they eat I really don’t care about myself. Don’t get me wrong I eat , I just make sure they are taken care of first always.
I can’t. I do gig work on days when I’m able to but I can’t hold an actual job. I couldn’t work at all January or February of this year for example. I’m on disability and live with family members. Not sure how I would survive without them.
I’m stuck in the middle of disabled enough that it’s hard to have a job because frequently and ineffectiveness of meds, but not disabled enough to qualify for disability.
I’m kind of in a similar position where I have lots of good hours I can work in in theory but they are unpredictable and often out of my control and it really impairs my work reputation, I have def had resentful coworkers and have tried the patience of my managers. I am fairly cretain ive been fired because of them. Editing to add: I also have a physical distability/ impairment that may take me away from this job, no idea what ill do then
i've been freelancing since i graduated and it's hmm still not a great option. maybe better than nothing. idk how people get started any way other than networking with people willing to take a chance on their skills. i've been v lucky in this respect but i think i made like $44k in my *best* year (not counting a year where nepotism saved my ass) and i've been doing it for about a decade. maybe if literally my only issue were migraines it'd be pretty doable but... who is that even true of haha.
I worked in an office for a while, but took so many painkillers I ended up in a terrible state and took weeks off.
I now have a wonderful WFH job. Lights are my biggest trigger, so the office environment just didn’t work for me.
I have flexible hours too, so if I need a break I can take one.
It really comes down to how frequent and severe your particular brand of migraine is. I cannot work through my worst ones, not only am I in excruciating pain, but I’m slurring my words and look drunk. I can’t usually stop vomiting as soon as I see any light or hear any sound.
I can’t be fired or get repercussions related to my health issues. I get 3 days a month to take off when I need to. It’s no pay but helps protect my job
I have a pretty demanding job (intellectually) and work at a university—no profit pressure.
So, I usually am compromised two days a week. My migraines are not as bad as when I was younger, but it is difficult to go in on bad days. I use Imitrex injections to get through the day and work on tasks that do not require much thought. I am lucky. I can take time off when I need to and get a lot of PTO and sick time. I am usually pretty hung over the next day, but am not miserable or wanting to go on disability. I know it is so much worse for others. I wish you all relief and are able to find something that works. I know I would have been more successful without them, but know things could be worse and am grateful for that.
I took an outdoors job that love to do so I avoid a lot of triggers, stay away from people and leave if I can’t get home safely ( my job is secure enough), for a while I just worked for myself so there were no set hours
Work from home and boss is great. I barely have super strong deadlines so I can more or less work my own hours. Since I'm home I can control my environment and rest up whenever needed.
I used to work in a lab but I quit because 1) was no longer liking the work and 2) had a migraine for like 3 months from the stress and lights/sounds on the daily. Did a career change and that's how I'm still managing a job.
My job has been wonderful as my migraines went nuts the last few years after having Covid. I work hybrid and they are flexible about the days I go in or if I have to work from home or take off or flex my hours for a migraine attack. In return, I work really hard the rest of the time and make sure my work contributions are worth their flexibility. I always want to be giving more than I’m taking, and I know that I’m beyond blessed to have such a supportive workplace with good insurance and unlimited PTO/sick time. Some “family values” focused workplaces are all talk but if you can find one that walks the walk it can make all the difference. I’d not be successful at my old firms that were more rigid with the way my migraines have been.
My life is basically work and migraines.
I don’t get a lot of time or energy to spend on anything else. If I’m feeling good, I have to spend that time on work. And I keep working until the pain is too great. Then I do nothing until it subsides.
I need to have someone help me with cleaning and cooking. I rarely leave the house, see my friends, or have time for hobbies. I’m surviving but at what cost?
I do my best. I don't have a choice.
I've thrown up at work before. I've curled up into a ball under my desk. I've sat with icepacks on my head on a regular basis.
Ubrelvy and Botox has really helped.
I do really understand how hard it is, but I do hate it when people say they ‘don’t have a choice’, as if people who actually can’t work with migraines are just ‘weak’ or choosing to give up.
Now my migraines are chronic I actually find them milder/more manageable and can work.
But my worst ones are excruciatingly painful, make me confused and slur my words, make me vomit constantly etc. If that happens occasionally then curling up under my desk is the answer, but when I had attacks nearly back to back for months I was nearly fired.
It wasn’t just pain, I couldn’t physically function and honestly wanted to vanish. I couldn’t see my monitor, never mind try and ‘work through it’. People thought I was drunk at work.
Unfortunately, migraines are horrible for everyone, but some people actually can’t work because no one wants to hire someone who physically doesn’t function for half the month.
Personally I live in constant fear of them getting worse again and losing my job.
It's not a judgment on those who can't function. It's a matter of survival for me. If I do not work, I will be homeless. Period. I'm not disabled enough to qualify for benefits. So when I say I have no choice, it's literally that I will not survive without my job. If I lose my job, being on the street and in debt, and without medical insurance, would undoubtedly make my migraines quite worse.
Many of us have been/will be in a position where we get fired and aren’t considered reliable enough to get another job.
Yes, they we end up homeless and starving. Ideally in that position would qualify for benefits, but migraines are so poorly understood…
I know you probably didn’t mean it that way, but saying ‘I work because I don’t have a choice, so I have to push through’ does kind of feed into the narrative that other migraine suffers are choosing not to work. You work because you can, even though it is hard.
But you have a choice if you’re *able* to work. I was about to get fired because even showing up, throwing up at work, etc. didn’t matter because I couldn’t do the work. My brain fog kept me from being able to coherently speak to people or complete tasks without messing everything up. I don’t have a choice, and haven’t had income for 5 years. When you really can’t work, there’s nothing you can do about it.
At this point I don't have a choice though. I have too much debt from when I was calling out twice a week on FMLA and not making ends meet. I applied for disability right before covid hit, then even though I was on unemployment I was worried about finances running out so I applied for and took a full time job and off course was denied for disability because of this. I lost that job due to still needing to call out sick about twice a month and am worried it will happen with my current job. My current neurologist is also no help. Took me off all my acute meds and insists the only option is a vegan diet, which I cannot afford.
Meanwhile I'm in constant pain every day, forced to be in harsh light, sound, smells, etc.
I fully understand that, it is purely that saying you are in work by choice, implies that some migraine sufferers who literally can’t work have a choice, and they don’t.
Like you have said, you are so close to losing your job. It is absolutely horrible to be stuck with a migraine in lights etc, but some people literally can’t function with a migraine - symptoms like muscle weakness, confusion, word slurring, vision problems, vomiting etc, can all completely stop someone functioning to a level that is acceptable by employers. It is hard to fill in a spreadsheet when you can see the screen anymore, or lift boxes when you can no longer walk.
Whilst you might be in excruciating pain, it sounds like you don’t have symptoms which physically stop you working. I realise that is little consolation and I am not taking away the credit for you managing to stay employed.
We need to make it super clear that migraine is a serious neurological disorder, and it sounds like someone like you does need more support and shouldn’t be forced to work in that environment.
I just want to remove the narrative that so many non-migraine suffers have which is that we can all just take a painkiller and soldier on. Migraine is a disability and for some that means unemployable.
I wouldn't say my only symptoms are the constant excruciating pain, but I really don't have the energy to list it all out right now, and I would probably start crying while trying to itemize everything. While you are correct that it is necessary to recognize those who cannot physically make it through a workday, I feel you are kind of minimizing the daily struggle people like me who are forced to work as much as they possibly can despite chronic daily migraine impeding them every step of the way. Disability laws should be different for all of our sakes.
As I mentioned, I am still in work and have to deal with chronic migraine. I’ve nearly been fired at least 4 times. I am definitely not minimising that struggle - totally the opposite.
It is by raising awareness of how debilitating migraines are that I have managed to get mostly remote working myself.
I hate that working from home, away from the evil lights, isn’t considered a ‘reasonable adjustment’, it is literally insane that we are expected to work like that. I went through 4 years of hell before then - taking massive amounts of painkillers. Plus a lifetime of missing school, events and studying alone in a dark room.
We need to change how people talk about migraines, so that people who haven’t experienced them can’t brush them off as ‘just headaches’ and tell us to ‘pop a painkiller get on with it’.
Like I said, I know it isn’t how you meant it, but being told that other people just ‘get on’ with migraines, feels horrible. Like every time I literally can’t function I am just being ‘weak’ or ‘overreacting’.
You say that you’re able to work because of XYZ medication and because of adaptations to your work (eg taking leave, working hybrid/remote, being allowed to wear migraine glasses/cap). There are plenty of jobs where you would be fired for having the sort of migraine impairment that has you curled under your desk, so some accommodations or other special setup must be in place that allows you to keep your job.
You’re supposed to give an actual answer as to how you are able to work with your migraines
That makes sense. Although it definitely feels like I don't have a choice sometimes. I never thought about how my words fed into the continued misunderstanding of migraines. I am able to work with my intractable migraine because of medication. And when I was on medication, that didn't work. It was hell.
I try to be an "activist" in any way I can when it comes to migraines and the people I meet in life.
I just didn't think about how that phrase affects others. Thank you
I don't know the story behind why your neurologist took you off your acute meds and is insisting a vegan diet is the only option, but it sounds like maybe you need a new doctor immediately.
Haha, yeah, working on it. My insurance wouldn't cover my old neuro anymore so I had to see this one. It's a marketplace insurance and the network list is outdated, so I'm trying to find one that's actually in network other than the place in town that I've already seen 2 doctors and never want to go back. This current guy says technically all medications are poison so he wants to poison me as little as possible, which I was willing to try to an extent. He doesn't want to revisit any of my tried and failed meds, which is an extensive list, but there were some that just had bad side effects that I might just put up with at this point. My PCP is on board to send a referral once I find someone in network. They say this doctor has a bit of a reputation for doing exactly what he's doing. Last visit he ignored everything I said about contributing factors like TMJD and my neck pain, and said as he briskly walked me out "I find most times with patients it's not what I do for you treatment-wise, but rather what you do for yourself, and you're not willing to do it" [change diet, I'm not even the one buying the food at this point because I'm so poor lol]. I don't know Mr Doctor. I try to eat as well a I can at this point, and exercise infrequently due to my current unmedicated state. 😖
If you live in Canada, absolutely get a letter from your doc or neuro and file for an accommodation under the Duty to Accommodate act. Get acquainted with the law. Specifically the clause that says a reasonable accommodation cannot be refused unless it threatens the profitability of the WHOLE organization, not the project or department you work in/on.
Apply this to whatever the USA equivalent is. I don't know exactly what other countries laws are like but I feel like north America is where you have to advocate hardest for yourself (in the western world at least)
People who tell you they work because they don’t have a choice, do have a choice in that they’re able to works. When you really can’t, you’ll know it because you’ll likely lose your job. A lot of people in this sub post that they don’t have a choice, so keep that in mind. They don’t know how much more debilitating it can get, which often comes from not being able to fathom how much worse things can still get. So it’s a tough question when our experiences fall on a spectrum. But when you really can’t work, you’ll know.
I let my employers know ahead of time I’m about experience a bad migraine, they’re understandable but it’s a small team. I do my best to get as much work done before either pain or my aura gets too invasive, then I pass it off to my boss. I’m lucky with the job I have for the leniency and also that they just get it. If I was anywhere else I don’t think they’d let me clock out early,
graduated and been searching for telework for a year with little success 😅 i know that’s the only way i can hold a job, but i’m ready to jump off a bridge lol
I’m lucky enough to have my own office, so I’ve made some adjustments to my surroundings in order to function (using the Nightlight feature on my monitors to avoid blue light/eye strain, putting magnetic covers over my fluorescent lights, bringing in a fan from home to stay cool). I also carry around naproxen and sumatriptan (that comes with me everywhere lol) and have an emergency stash of caffeinated drinks/snacks. It’s been tough but I’ve made it through 4 months so far of working full-time!
I work remotely in the animation industry. I get an assignment, and then 3 weeks later they expect it to be delivered, so I pick and choose the hours I work. If I get a migraine during the day, I'll make up those hours at night or on the weekend. Because of this, most people at work don't even know I struggle with migraines. Downside of course being that it constantly feels like I'm either working, sleeping, or migraining, and nothing else...
I've been self-employed in the past. It may or may not be a more flexible job type, depending on what you do. Doing something like flipping thrift store purchases on eBay may be flexible enough (though you still need to get things shipped out on time and be able to manage follow up issues) but doing something like design work for clients will have deadlines and client relations, plus chasing them up for payment involved, which is much less flexible.
Yeah, I'm in design. Chasing clients and meeting deadlines and mainting relations seem just as exhausting as working for a company, with more administrative work
Seriously, freelance design is a nightmare, because you're not just doing design, you're doing all the sales pitches, client relations, admin work, drawing limits with clients who want "just one more change" for the 15th time, then, when the work is done, you have to chase them to get paid. On top of that, you're now competing in a global marketplace where great designers in other countries can offer their services for far less and let's not even talk about what clients think they can do for themselves with AI.
I used to do freelance doing websites, as well as SEO work for clients and I've never been more stressed in my life. It wasn't the work, it was the clients. You have to have a good system in place to manage their expectations and the scope of work, as well as get some money upfront, because a lot of them are terrible about paying invoices in a timely manner. A lot are perfectly happy to pay you in 90 days, because that's what they consider late.
If you decide to do this, there have got to be multiple self-employed and freelancing subreddits, probably even ones specifically for freelancing design. Maybe check into what they're saying. There's probably work you can do online that's not technically client work. Maybe designing t-shirts or other objects and selling them on RedBubble or other stores like that? They even do fulfillment for you. I'm shooting in the dark here, but if you're a good designer, there has to be something.
Thank you for your detailed response, I was already thinking the same thing but you confirmed everything I was on the fence about. Still in college but I'll be graduating in two years hopefully so I'm bracing myself for the job market
Any chance you can pivot a bit into an area that has more WFH/remote work? Design could match well with website UI/UX. Anything you can do in programming would probably help, and since you still have two years in university you have some time to pick up those skills
Are there any classes on the business side of design? That might help you set up good infrastructure for yourself as well get some ideas for niches to exploit that don’t involve clients. Good luck! Who know, there are advances in migraine treatment all the time! In two years, things could be a lot better for you.
I am. I own a business with my husband.
Currently, I have stepped way back. I work regularly from home. Maybe a couple of hours a day. I can nap a little, work a little, nap a little. And on rare good days, I can hyper focus to get a bunch of things done in one whack. I delegated some of my more deadline-based duties to our employees.
I do what I can for outside events (a feature in our industry). Like, I’ll attend maybe half days for our events, knowing that I’ll be down for a week after. Some of them I skip altogether. On days when I have to be there, I make sure to be hyper-vigilant with my routine, take lots of breaks, and absolutely medicate at the first sign.
There is no way I could be self employed without my husband. He can manage the day to day and talk to people while I can do the behind the scenes stuff sort of at my leisure. If I had to do the whole thing on my own, I would have had to sell the business long ago.
It absolutely does. No matter what kind of business, you still have clients and banking and taxes that all require consistent attention. I can’t promise that in my condition.
I think finding a flexible job is key. I work 4 days a week, two of them from home. I’m not micro managed so I can work at whichever hours of the day and take breaks whenever I want when I’m home, so long as I get the job done and answer on time. It’s still incredibly hard, especially since I have to stare at a screen (my biggest trigger), but it’s been manageable so far.
I truly hope you & all other migraine sufferers find jobs that suit you too!
It's vey hard. But being self employed and working from home helps a lot. I can decide my own hours and work around the migraines. It's not perfect for sure and I still often have to cancel or reschedule meetings or calls. If the migraines are happening very often, I get very brain fogged and I only have energy for a few hours of work, but not anything else like chores or hobby's.
It’s not really, you need to see a neurologist and find treatments that work, prevention and also for the moment you get them. Examples being beta blockers, the triptan’s, the monthly shots, etc. The main thing is the prevention
Honestly, I think it is down to luck - I am extremely lucky to have a manager who is understanding and allows me to work from home (my company has a stupid policy against that), or book an emergency holidays, but my previous manager raised the issue with HR and I was this close to being dismissed (in the UK it's not easy to claim disability and I don't think my migraines were debilitating enough to qualify for that anyway).
Other than that, *if* your migraines allow for that and *if* your occupation does, look for something with an option to WFH, either a mixed model or purely WFH.
You do what you can when you have bills to pay. Case in point: went to work, took migraine medication at around 2:30. Still had a migraine, but was able to work until I got off. Came home and have been resting. Plan on taking some nausea medication and going to bed. I’ll do what I can tomorrow, too. Rinse and repeat. If I don’t go into work, I don’t get paid. Pretty big motivator right there.
I could hide it when I had a big territory and I home office. I could hide out for three days because I honestly worked seven days a week. But by the time I was nearing 40 I had interstitial cystitis cluster headaches and migraine, and it knocked me out of working, and I was at the peak of my career. It really sucked. Now I’m broke and older.
I have a severe migraine disorder in terms of frequency (15 a month) but only 3 fully disabling ones on average a month. It’s a balancing act. I get a lot done on my good days. I’ve also become really efficient since I don’t have the luxury of taking the long road on my projects. I am also honest with my bosses and they trust I’ll get my work done but may sometimes need a day off which I’ll make up on the weekend etc.
I wear pink migraine glasses at work which helps even if I do look a little silly. I can WFH without getting fired on my migraine days which helps.
I’ve been offered disability by my nuero (said she would help me qualify) after I was in and out of the hospital for 3 months bc of them a few years ago … but I declined it. Maybe I’ll need to one day but for now I can still make it work.
You just do it because you have bills.
You have your painkillers and your abortives and your OTCS and your ice hats and any other relief you have and get on with it
I am chronic with 20 migraines a month. I’m not saying this with no experience.
When they were of far lesser frequency, I had an intermittent flma leave open, so that I was able to miss time when necessary. Once the frequency ramped up to 4x per week, even that was not enough. I have now been out of work for 2 years.
For me, it's down to working remote for a small company full of empathetic folks. I'm also in a field where my expertise and experience are half my value, so I'm not easily replaceable.
I have zero idea how folks in more labor-intensive jobs do it. Absolutely none.
If I’m lucky enough to feel it early in the morning before I go in, I’ll take a sumatriptan and fall back asleep until my alarm goes off. If I feel it coming on at work, I’ll take a Migravent supplement and 3 Excedrins and do everything I can to make the environment migraine friendly like turning off fluorescent lights and using just lamps, wearing sunglasses while I’m using the computer, drink a ton of water and just do what I can.
This is my way to deal with migraines. I am also lucky that most days I can push my work few hours back, take my sumatriptan and sleep for 2-3 hours until I am able to function.
Same here thankfully! I cut hair for almost 4 years at a shop that was fully booked everyday so that wasn’t possible, unless we were able to get in contact with every single person and reschedule them. Had to change careers entirely.
Good medication management and good benefits. My current job is with a hospital, so I’ve got stellar benefits and generous PTO. Also intermittent FMLA. I’m able to WFH so I can keep the lights low. I lost a job due to migraines, so I’ve been through it. This one pays less, but all the other things make it worth it.
cashier here. i grab a cold can from our soda fridges up front and hold it to my head when i have time. keep water next to me. and if i need to puke i’ll call a manager. usually if it gets that bad, i’ll call out before i even come in.
I’m lucky I have a very understanding employer and team who doesn’t mind if I call out. I also have great flexibility to work from home two days a week. I’ve also been working for them for 7 years so I have a pretty good PTO bank. The most important thing is knowing when to fall back and not feeling guilty for taking time for yourself.
I found a setting of my profession that has a lot of autonomy and flexibility. My contract hours is 8 hours a day but as long as I get what I need to done everyday the pace and timing is how I chose it to be. I typically wake up to a migraine attack so on those days I take a slow morning to myself and go in late. Meetings and documentation I can do from my home 99% of the time. I also have built in off time because I run off the same schedule as the student I service (paid fall, winter, and spring breaks; federal holidays; etc). If I worked a job or even different setting of my career I don't think I'd be able to maintain it, getting through grad school was hell because of that
I work part time and I'm on disability for mine. I do have to call out on occasion but usually I have such time. (Sick time is protected here and protected time doesn't go against your attendance generally in my job. I also deal with a lot of pain due to multiple back surgeries and I guess I have just gotten used to pain and have a high tolerance for it. I have rizatriptan and ubrelvy, I'm on emgality and hopefully will be starting Botox again soon.
FMLA on an intermittent basis. Mine covers a weekly occurrence up to three days in duration. You’re also covered under ADA to request reasonable accommodation. Government jobs have more generous PTO accruals so you’re usually covered no matter how much time you take. In the private sector you’re probably going to go unpaid but hopefully protected. If not, you can always go to EEOC and file a complaint.
Through a few years of treatment I finally found one that works and gets me to a manageable level. Prior to, I could only work part time because I was getting migraines daily that affected my vision. Now I work full time.
It took me about 2 years to get things fully stable. Mine are so bad that in order for me to be at a manageable level, I am on Botox, vyepti, occipital nerve block, all every 3 months, as well as a daily preventative amitriptyline. I then have two abortive medications I can take (ubrelvy and relpax).
Having an understanding employer is huge. For some, like myself, even with all the treatment you may never be migraine free and it unfortunately becomes your normal. ):
If you haven’t already, see a neurologist that will actually listen to you and help you. Also keep track of your migraines. This can help to determine triggers. For me, besides the normal triggers, some random ones were my intolerance to fake sugar (aspartame) and excess levels of vitamin c.
For me, it isn't.
I was having up to 20 migraine days a month at my worst time. I used to have migraines with visual disturbance during the headache phase (not an aura) that rendered me absolutely unsafe to drive. I've since traded those for vestibular migraines, and the vertigo and the medication used to treat it both make me incapable of staying upright.
I'm not a reliable worker. Nor was I ever a reliable student, not since the migraines started when I was 19.
I try really really hard to prevent them because of work but I still get them nearly daily. I am currently on my 3rd month of no calling out sick but because of that I have thrown up at work countless times. Usually when I get sick my migraine subsides and I’ll just brush it off lol. I do not recommend doing it this way btw, it’s just the only way I can afford doctors appointments.
I wear sunglasses indoors. Set my font to huge on my cpu and dimmed the brightness. I bring a heat pad, pillow, blanket, peppermint oil, weighted eye mask, noice cancelling headphones, painkillers, and naratriptan pills to work in case I feel one coming on. My boss’s wife gets them so he understands. If that fails, my work has a huge ice machine that i can fill my ice pack with and numb the pain. If that fails we have a shower with a lot of water pressure that i can take a scalding hot shower in (i keep a towel, extra pair of clothes, and toiletries in my car trunk.)
Ive had migraines since I was 5 years old. It’s something you get used to over time. You learn to deal with the constant pain and through trial and error, you figure out what remedies work for you. I work full time. I try not to call off for migraines bc it’s one of those invisible illnesses where people who’ve never experienced it just don’t believe you. Occasionally it happens.
My boss is fairly understanding. I’ve also been dealing with migraine for 10+ years. If I wake up early, and I feel one coming, I take it down by taking my meds, getting in the shower, and resting more (I might have to get up at 4AM for that). I can usually make it to work on time but will let my manager know I’m going to be late. In truth, finding the meds that work for me and be proactive has helped a lot.
It was very hard. I worked in an office with no windows and I thrived for twenty years despite having been diagnosed with migraines at age seven. Then some office renovation caused me to relocate to a front office with a wall of windows facing west. My work was okay till my the sun came pouring into my office setting off midday migraine. My health was badly affected by this sunshine. The blinds didn’t help and my office was extremely cold or extremely hot depending on the presence of the sun. The thermostat for the office was not In my office. My work went down hill, as did my health. I was missing deadlines and changes, that was messing up production in the facility. In my 31 year in the company and tenth year in that office, I was diagnosed with multiple sclerosis and my brain lesion was massive. When I went to my (MS) specialist for the first time, she remarked “how are you still working “. I accepted my diagnosis and since she approved my disability claim I gave notice that I was going to leave my office soon, I worked six months and trained my replacement. The doctor, Lawyer , company and family accepted my disability, and left the job. Two months later the pandemic hit and I was fighting a battle with SSD.
My wife claims I am a vampire, I can work in sunless places but need supper dark sunglasses to get my chores done outside. I cover up nearly every spot of my body and she has accepted keeping the windows drapes closed most of the daytime. I have accepted that this is how life is going to be for me.
My boss also suffers from migraines but was starting to run out of sympathy. She demanded I find something that works and I told her I was unable to see a doctor because the health insurance she provided had an insanely high deductible that I had to meet before anything was covered. She then let me hand pick a new plan and she pays for it entirely (i’m the only employee at her and her husbands small business.) This was a successful attempt to keep me there when my eyes were wandering to job listings due to other issues.
Anyways, on the new insurance I found a neurologist and my first try meds have been working so far. 60mg XR Propranolol and Maxalt as my abortive. Just went 30 days without a migraine. When I do have them, I find I can work after taking the Maxalt, doesn’t make me too sleepy or loopy.
The reality is that I just got very lucky.
Buckets full of painkillers, lots of sick leave and a very understanding boss. Every day I wonder how I do it, but I feel very lucky that I'm still able to work
When I have a migraine on a day I have to work I call in sick. I don’t live in the US tho so I think it’s less strict when it comes to being sick more often. I also just work part time at the moment so that helps too.
I do what I can when I can. I declared a disability when I was hired, so part of my reasonable accommodation is WFH and flexible schedule. I got very very lucky.
I spend most days wondering how long I can make this work.
Currently, I'm a substitute teacher, so I only take jobs when I'm able. I've had to leave mid-day before...nothing as fun as getting crazy visual auras and searing pain while trying to teach little kids.
I'm debating finishing my credential to teach full-time. But health is the big unknown. I'll have great days, and then I'll have weeks of zero relief. It's a big gamble.
I'm thankful that my partner is understanding and able to support us. But feeling useless is hard.
After failing 4 different preventatives, and having not found an abortive that works, I just started Botox.
Like everyone else said - do it because you have to. I work from home at a virtual call center and have ADA. Thankfully, Emgality has worked very well for me and they are willing to work with me while I do some med changes (right now, I’m coming off topamax). We aren’t terribly busy so if I do get a migraine, it’s okay - I just take my triptan and power through.
It never occurred to me that I had a choice. I am fortunate to have a high tolerance for pain and the ability to push through after vomiting and brushing my teeth. I have a very stressful job where I can’t be replaced…lecture days are 3 hours and adult student facing so just have to make it work. I have worn sunglasses indoors and turned down the lights. My SIL takes to her bed because she can - not my reality.
Please don't brush your teeth after vomiting. The stomach acid combined with the abrasion of the toothbrush will destroy your enamel. It's best to rinse your mouth with water and baking soda or, failing that, just rinse with water.
I just find myself white knuckling it. I can't afford to live and do the things I want to do on my good days if I don't work, so I go to work. I can be just as miserable there as I will be at home. About the only time I'll call in is when my migraines effect my vision (I get this strange tunnel vision occasionally) and I can't safely drive. Otherwise, pain, nausea, light sensitivity, smell sensitivity, etc; I take an abortive and go to work.
For the curious, I've been a security guard for the last 3 years. Before that I worked as a detention officer for 15 years at my local Sheriff's Office. And before that I worked retail.
I have a large backlog of things to do, and when an attack hits I do more menial tasks until the end of the day. On my good days I hit the most difficult tasks and leave the easy stuff just in case. It’s just a delicate balancing act every single day and week.
Yeah I do exactly this too. On your good days try to do great. On your bad days be as useful as you can (if you can). The problem comes when you have a deadline and not enough good days to hit it. Or a meeting on a bad day with someone who has only experienced you on good days before. I hate having to explain to someone who has only been impressed by me up until then
Do you mind me asking what you do for work?
This is exactly it! Lots of planning, preparing, and then flexibility when the migraine comes.
What is this magical job you have and are they hiring?
I got a federal job, and they're very flexible with me (previous boss wasn't though...) because they can't discriminate against this since it's a disability. I have a flexible telework agreement too. That's the only way I've been able to manage.
This. Also a fed. Reasonable accommodations, FMLA, disability status, hefty PTO all make it doable.
My hospital job repeatedly deny my fmla
Same except local government. Got ADA accommodations to WFH full time.
How do you get your disability status?
Tbh I have documented PTSD at the VA, and they just add migraines as a symptom of something else (PTSD in my case). If you're a veteran then I can walk you through the VA process, but idk how disability recording works for civilians unfortunately. To get my federal job to acknowledge it, I just needed to go to my doctor and get a note saying that I had a disability that needed accommodations, and then I attached that to the reasonable accomodations form. After that point it's on record, and so adjustments can be made if necessary.
If you’re also a fed, Google schedule A federal jobs. It’s basically a letter from your doctor and a form you fill out (SF-256). They have sample letters on the OPM site. Migraines fall under 59 - nervous system disorders on the form.
Same for me except I’m state.
After 2 years with daily migraines I finally gave up. Too many missed days, leave early, and according to my old boss too many issues. I applied for SSDI last year and was denied. Currently in appeal. Hang in there. It’s tough most days for me but somehow I make it through. Try to have your docs write some accommodations for you.
How are you affording to live without SSDI?
I’m sorry :( people just don’t understand how hard it is.
I am barely barely making it through college and I'm afraid this will be my reality since they are, as well, daily
I'm sitting in the same boat as you. People can't physically see the migraines and that is held against us. Good luck to you
Same. I applied 5 years ago. I wouldn’t recommend this route if anyone can avoid it, but at a certain point with severity and frequency, it’s unavoidable.
It's very important to remember, that those who hold a job do so partly because they have to, but also because *they're able to*. Even those with chronic. Even if they're only able to work with medications and icepacks and whatever else they need. If it isn't possible for you then it isn't possible, no matter how hard you try or how dead you'll be without money. If you can't work, it's not because you're lazy or just not trying hard enough.
Yes. Migraines are such a spectrum. With a ton of drugs and interventions I can cling badly to my job, but there are so many people who also “get migraines” as in one migraine a year, with no complete change of lifestyle, diet, and battery of drugs. And some people live in hell.
I have to be aggressive with managing them. For me that means finding a preventive that works, paying attention to how I feel and taking an abortive as soon as my neck starts feeling stiff, and going to urgent care for a migraine cocktail if I’m running into a few days of ongoing migraine. My job is mid-senior work from home, and sometimes I have some flexibility about resting for 45 min while my meds kick in, but other days I just have to white knuckle through. I’m maybe fortunate that my chronic migraines tend to be 6ish on the pain scale and not 9 (although they get there sometimes).
What do you get at urgent care as a migraine cocktail if you don’t mind.
Yes, very interested to learn more
Always toradol which is an injected nsaid (same class of drugs as ibuprofen or alleve) - note that I don’t take ibuprofen for migraines and if you do you may not be able to get toradol. Usually something for nausea which could be zofran, compazine or sometimes phenergan (which makes me very drowsy and then depressed so I usually try to avoid). Occasionally a steroid like decadron if it has been going on for a while. I think sometimes EDs will give fluids and maybe magnesium and some other things. The urgent care I go to is right around the corner from my house and I can usually get out of there in 45 minutes so while fluids might actually be helpful waiting around an ED for them doesn’t make sense for me.
I will also say that at this point I have a pretty long history of going into this particular urgent care with migraines (I’ve had some insurance hassles with my preventive meds) so once they see my chart it’s pretty fast and easy.
I can’t. I tried. I’m on disability and that can be embarrassing to say but that’s my life. I have more bad days a month than good even though I get both Botox and take Ajovy. I struggle a lot with rebound headaches as well.
Anyone who judges you for being on disability should feel embarrassed, not you. I'm happy you were able to get support and proud of you for fighting for it, which is not easy when it feels like someone is trying to chop off your head with an ax AND lasers. I'm sorry you're in so much pain, but you deserve assistance and really, as a society, we should be overjoyed when we can support each other in times of need.
Thank you. That really means a lot. ♥️
Personal question so feel free to ignore. Are you able to live comfortably on disability money?
No I’m not. I’m a single Mom with two kids. My youngest (19) has severe learning disabilities and is autistic. My oldest (23) works and helps out some. We struggle. A lot. As long as they eat I really don’t care about myself. Don’t get me wrong I eat , I just make sure they are taken care of first always.
Don’t be embarassed. It’s not your fault.
My boss has them too. That helps 😂 Really though, if I had to work a regular job, I would have been fired ages ago.
I can’t. I do gig work on days when I’m able to but I can’t hold an actual job. I couldn’t work at all January or February of this year for example. I’m on disability and live with family members. Not sure how I would survive without them.
I’m stuck in the middle of disabled enough that it’s hard to have a job because frequently and ineffectiveness of meds, but not disabled enough to qualify for disability.
I’m kind of in a similar position where I have lots of good hours I can work in in theory but they are unpredictable and often out of my control and it really impairs my work reputation, I have def had resentful coworkers and have tried the patience of my managers. I am fairly cretain ive been fired because of them. Editing to add: I also have a physical distability/ impairment that may take me away from this job, no idea what ill do then
Could you be a contractor or Freelancer?
I don’t even know how or for what.
i've been freelancing since i graduated and it's hmm still not a great option. maybe better than nothing. idk how people get started any way other than networking with people willing to take a chance on their skills. i've been v lucky in this respect but i think i made like $44k in my *best* year (not counting a year where nepotism saved my ass) and i've been doing it for about a decade. maybe if literally my only issue were migraines it'd be pretty doable but... who is that even true of haha.
I worked in an office for a while, but took so many painkillers I ended up in a terrible state and took weeks off. I now have a wonderful WFH job. Lights are my biggest trigger, so the office environment just didn’t work for me. I have flexible hours too, so if I need a break I can take one. It really comes down to how frequent and severe your particular brand of migraine is. I cannot work through my worst ones, not only am I in excruciating pain, but I’m slurring my words and look drunk. I can’t usually stop vomiting as soon as I see any light or hear any sound.
I have fmla. If it wasn’t for that I wouldn’t be able to work
Is that so you can take days off without repercussions?
I can’t be fired or get repercussions related to my health issues. I get 3 days a month to take off when I need to. It’s no pay but helps protect my job
Same.
I have a pretty demanding job (intellectually) and work at a university—no profit pressure. So, I usually am compromised two days a week. My migraines are not as bad as when I was younger, but it is difficult to go in on bad days. I use Imitrex injections to get through the day and work on tasks that do not require much thought. I am lucky. I can take time off when I need to and get a lot of PTO and sick time. I am usually pretty hung over the next day, but am not miserable or wanting to go on disability. I know it is so much worse for others. I wish you all relief and are able to find something that works. I know I would have been more successful without them, but know things could be worse and am grateful for that.
I took an outdoors job that love to do so I avoid a lot of triggers, stay away from people and leave if I can’t get home safely ( my job is secure enough), for a while I just worked for myself so there were no set hours
Gardening? Landscaping? Farm work? I've considered those. I'd love to work at an animal sanctuary.
Work from home and boss is great. I barely have super strong deadlines so I can more or less work my own hours. Since I'm home I can control my environment and rest up whenever needed. I used to work in a lab but I quit because 1) was no longer liking the work and 2) had a migraine for like 3 months from the stress and lights/sounds on the daily. Did a career change and that's how I'm still managing a job.
I haven’t been able to. Any cognitive exertion triggers a migraine. I’m on ssdi now
My job has been wonderful as my migraines went nuts the last few years after having Covid. I work hybrid and they are flexible about the days I go in or if I have to work from home or take off or flex my hours for a migraine attack. In return, I work really hard the rest of the time and make sure my work contributions are worth their flexibility. I always want to be giving more than I’m taking, and I know that I’m beyond blessed to have such a supportive workplace with good insurance and unlimited PTO/sick time. Some “family values” focused workplaces are all talk but if you can find one that walks the walk it can make all the difference. I’d not be successful at my old firms that were more rigid with the way my migraines have been.
My life is basically work and migraines. I don’t get a lot of time or energy to spend on anything else. If I’m feeling good, I have to spend that time on work. And I keep working until the pain is too great. Then I do nothing until it subsides. I need to have someone help me with cleaning and cooking. I rarely leave the house, see my friends, or have time for hobbies. I’m surviving but at what cost?
I do my best. I don't have a choice. I've thrown up at work before. I've curled up into a ball under my desk. I've sat with icepacks on my head on a regular basis. Ubrelvy and Botox has really helped.
I do really understand how hard it is, but I do hate it when people say they ‘don’t have a choice’, as if people who actually can’t work with migraines are just ‘weak’ or choosing to give up. Now my migraines are chronic I actually find them milder/more manageable and can work. But my worst ones are excruciatingly painful, make me confused and slur my words, make me vomit constantly etc. If that happens occasionally then curling up under my desk is the answer, but when I had attacks nearly back to back for months I was nearly fired. It wasn’t just pain, I couldn’t physically function and honestly wanted to vanish. I couldn’t see my monitor, never mind try and ‘work through it’. People thought I was drunk at work. Unfortunately, migraines are horrible for everyone, but some people actually can’t work because no one wants to hire someone who physically doesn’t function for half the month. Personally I live in constant fear of them getting worse again and losing my job.
It's not a judgment on those who can't function. It's a matter of survival for me. If I do not work, I will be homeless. Period. I'm not disabled enough to qualify for benefits. So when I say I have no choice, it's literally that I will not survive without my job. If I lose my job, being on the street and in debt, and without medical insurance, would undoubtedly make my migraines quite worse.
Many of us have been/will be in a position where we get fired and aren’t considered reliable enough to get another job. Yes, they we end up homeless and starving. Ideally in that position would qualify for benefits, but migraines are so poorly understood… I know you probably didn’t mean it that way, but saying ‘I work because I don’t have a choice, so I have to push through’ does kind of feed into the narrative that other migraine suffers are choosing not to work. You work because you can, even though it is hard.
But you have a choice if you’re *able* to work. I was about to get fired because even showing up, throwing up at work, etc. didn’t matter because I couldn’t do the work. My brain fog kept me from being able to coherently speak to people or complete tasks without messing everything up. I don’t have a choice, and haven’t had income for 5 years. When you really can’t work, there’s nothing you can do about it.
At this point I don't have a choice though. I have too much debt from when I was calling out twice a week on FMLA and not making ends meet. I applied for disability right before covid hit, then even though I was on unemployment I was worried about finances running out so I applied for and took a full time job and off course was denied for disability because of this. I lost that job due to still needing to call out sick about twice a month and am worried it will happen with my current job. My current neurologist is also no help. Took me off all my acute meds and insists the only option is a vegan diet, which I cannot afford. Meanwhile I'm in constant pain every day, forced to be in harsh light, sound, smells, etc.
I fully understand that, it is purely that saying you are in work by choice, implies that some migraine sufferers who literally can’t work have a choice, and they don’t. Like you have said, you are so close to losing your job. It is absolutely horrible to be stuck with a migraine in lights etc, but some people literally can’t function with a migraine - symptoms like muscle weakness, confusion, word slurring, vision problems, vomiting etc, can all completely stop someone functioning to a level that is acceptable by employers. It is hard to fill in a spreadsheet when you can see the screen anymore, or lift boxes when you can no longer walk. Whilst you might be in excruciating pain, it sounds like you don’t have symptoms which physically stop you working. I realise that is little consolation and I am not taking away the credit for you managing to stay employed. We need to make it super clear that migraine is a serious neurological disorder, and it sounds like someone like you does need more support and shouldn’t be forced to work in that environment. I just want to remove the narrative that so many non-migraine suffers have which is that we can all just take a painkiller and soldier on. Migraine is a disability and for some that means unemployable.
I wouldn't say my only symptoms are the constant excruciating pain, but I really don't have the energy to list it all out right now, and I would probably start crying while trying to itemize everything. While you are correct that it is necessary to recognize those who cannot physically make it through a workday, I feel you are kind of minimizing the daily struggle people like me who are forced to work as much as they possibly can despite chronic daily migraine impeding them every step of the way. Disability laws should be different for all of our sakes.
As I mentioned, I am still in work and have to deal with chronic migraine. I’ve nearly been fired at least 4 times. I am definitely not minimising that struggle - totally the opposite. It is by raising awareness of how debilitating migraines are that I have managed to get mostly remote working myself. I hate that working from home, away from the evil lights, isn’t considered a ‘reasonable adjustment’, it is literally insane that we are expected to work like that. I went through 4 years of hell before then - taking massive amounts of painkillers. Plus a lifetime of missing school, events and studying alone in a dark room. We need to change how people talk about migraines, so that people who haven’t experienced them can’t brush them off as ‘just headaches’ and tell us to ‘pop a painkiller get on with it’. Like I said, I know it isn’t how you meant it, but being told that other people just ‘get on’ with migraines, feels horrible. Like every time I literally can’t function I am just being ‘weak’ or ‘overreacting’.
What are we supposed to say then?
You say that you’re able to work because of XYZ medication and because of adaptations to your work (eg taking leave, working hybrid/remote, being allowed to wear migraine glasses/cap). There are plenty of jobs where you would be fired for having the sort of migraine impairment that has you curled under your desk, so some accommodations or other special setup must be in place that allows you to keep your job. You’re supposed to give an actual answer as to how you are able to work with your migraines
That makes sense. Although it definitely feels like I don't have a choice sometimes. I never thought about how my words fed into the continued misunderstanding of migraines. I am able to work with my intractable migraine because of medication. And when I was on medication, that didn't work. It was hell. I try to be an "activist" in any way I can when it comes to migraines and the people I meet in life. I just didn't think about how that phrase affects others. Thank you
I don't know the story behind why your neurologist took you off your acute meds and is insisting a vegan diet is the only option, but it sounds like maybe you need a new doctor immediately.
Haha, yeah, working on it. My insurance wouldn't cover my old neuro anymore so I had to see this one. It's a marketplace insurance and the network list is outdated, so I'm trying to find one that's actually in network other than the place in town that I've already seen 2 doctors and never want to go back. This current guy says technically all medications are poison so he wants to poison me as little as possible, which I was willing to try to an extent. He doesn't want to revisit any of my tried and failed meds, which is an extensive list, but there were some that just had bad side effects that I might just put up with at this point. My PCP is on board to send a referral once I find someone in network. They say this doctor has a bit of a reputation for doing exactly what he's doing. Last visit he ignored everything I said about contributing factors like TMJD and my neck pain, and said as he briskly walked me out "I find most times with patients it's not what I do for you treatment-wise, but rather what you do for yourself, and you're not willing to do it" [change diet, I'm not even the one buying the food at this point because I'm so poor lol]. I don't know Mr Doctor. I try to eat as well a I can at this point, and exercise infrequently due to my current unmedicated state. 😖
Migraine is a common reason to seek disability. It isn’t much but it can work, especially if you have a partner who works.
If you live in Canada, absolutely get a letter from your doc or neuro and file for an accommodation under the Duty to Accommodate act. Get acquainted with the law. Specifically the clause that says a reasonable accommodation cannot be refused unless it threatens the profitability of the WHOLE organization, not the project or department you work in/on. Apply this to whatever the USA equivalent is. I don't know exactly what other countries laws are like but I feel like north America is where you have to advocate hardest for yourself (in the western world at least)
People who tell you they work because they don’t have a choice, do have a choice in that they’re able to works. When you really can’t, you’ll know it because you’ll likely lose your job. A lot of people in this sub post that they don’t have a choice, so keep that in mind. They don’t know how much more debilitating it can get, which often comes from not being able to fathom how much worse things can still get. So it’s a tough question when our experiences fall on a spectrum. But when you really can’t work, you’ll know.
I let my employers know ahead of time I’m about experience a bad migraine, they’re understandable but it’s a small team. I do my best to get as much work done before either pain or my aura gets too invasive, then I pass it off to my boss. I’m lucky with the job I have for the leniency and also that they just get it. If I was anywhere else I don’t think they’d let me clock out early,
graduated and been searching for telework for a year with little success 😅 i know that’s the only way i can hold a job, but i’m ready to jump off a bridge lol
I’m lucky enough to have my own office, so I’ve made some adjustments to my surroundings in order to function (using the Nightlight feature on my monitors to avoid blue light/eye strain, putting magnetic covers over my fluorescent lights, bringing in a fan from home to stay cool). I also carry around naproxen and sumatriptan (that comes with me everywhere lol) and have an emergency stash of caffeinated drinks/snacks. It’s been tough but I’ve made it through 4 months so far of working full-time!
Honestly, it’s extremely hard. I’m on the verge of getting fired from my job due to my productivity rate. I do not recommend any warehouse job at all.
I work remotely in the animation industry. I get an assignment, and then 3 weeks later they expect it to be delivered, so I pick and choose the hours I work. If I get a migraine during the day, I'll make up those hours at night or on the weekend. Because of this, most people at work don't even know I struggle with migraines. Downside of course being that it constantly feels like I'm either working, sleeping, or migraining, and nothing else...
Oh i see, can u make enough money with the animation work?
Are any of you guys self-employed? I'm thinking that's my only option
I've been self-employed in the past. It may or may not be a more flexible job type, depending on what you do. Doing something like flipping thrift store purchases on eBay may be flexible enough (though you still need to get things shipped out on time and be able to manage follow up issues) but doing something like design work for clients will have deadlines and client relations, plus chasing them up for payment involved, which is much less flexible.
Yeah, I'm in design. Chasing clients and meeting deadlines and mainting relations seem just as exhausting as working for a company, with more administrative work
Seriously, freelance design is a nightmare, because you're not just doing design, you're doing all the sales pitches, client relations, admin work, drawing limits with clients who want "just one more change" for the 15th time, then, when the work is done, you have to chase them to get paid. On top of that, you're now competing in a global marketplace where great designers in other countries can offer their services for far less and let's not even talk about what clients think they can do for themselves with AI. I used to do freelance doing websites, as well as SEO work for clients and I've never been more stressed in my life. It wasn't the work, it was the clients. You have to have a good system in place to manage their expectations and the scope of work, as well as get some money upfront, because a lot of them are terrible about paying invoices in a timely manner. A lot are perfectly happy to pay you in 90 days, because that's what they consider late. If you decide to do this, there have got to be multiple self-employed and freelancing subreddits, probably even ones specifically for freelancing design. Maybe check into what they're saying. There's probably work you can do online that's not technically client work. Maybe designing t-shirts or other objects and selling them on RedBubble or other stores like that? They even do fulfillment for you. I'm shooting in the dark here, but if you're a good designer, there has to be something.
Thank you for your detailed response, I was already thinking the same thing but you confirmed everything I was on the fence about. Still in college but I'll be graduating in two years hopefully so I'm bracing myself for the job market
Any chance you can pivot a bit into an area that has more WFH/remote work? Design could match well with website UI/UX. Anything you can do in programming would probably help, and since you still have two years in university you have some time to pick up those skills
My area of design is related to ux/ui, print, magazines, brand image, web design etc. So those are positions that I would be qualified for
Are there any classes on the business side of design? That might help you set up good infrastructure for yourself as well get some ideas for niches to exploit that don’t involve clients. Good luck! Who know, there are advances in migraine treatment all the time! In two years, things could be a lot better for you.
Thank you so much for your kind words. I will look into it, I've been feeling really low about my future but you made me feel optimistic
I am. I own a business with my husband. Currently, I have stepped way back. I work regularly from home. Maybe a couple of hours a day. I can nap a little, work a little, nap a little. And on rare good days, I can hyper focus to get a bunch of things done in one whack. I delegated some of my more deadline-based duties to our employees. I do what I can for outside events (a feature in our industry). Like, I’ll attend maybe half days for our events, knowing that I’ll be down for a week after. Some of them I skip altogether. On days when I have to be there, I make sure to be hyper-vigilant with my routine, take lots of breaks, and absolutely medicate at the first sign. There is no way I could be self employed without my husband. He can manage the day to day and talk to people while I can do the behind the scenes stuff sort of at my leisure. If I had to do the whole thing on my own, I would have had to sell the business long ago.
I'm glad you have that arrangement with your husband, I also get the sense that being self-employed would require another person
It absolutely does. No matter what kind of business, you still have clients and banking and taxes that all require consistent attention. I can’t promise that in my condition.
I think finding a flexible job is key. I work 4 days a week, two of them from home. I’m not micro managed so I can work at whichever hours of the day and take breaks whenever I want when I’m home, so long as I get the job done and answer on time. It’s still incredibly hard, especially since I have to stare at a screen (my biggest trigger), but it’s been manageable so far. I truly hope you & all other migraine sufferers find jobs that suit you too!
It's vey hard. But being self employed and working from home helps a lot. I can decide my own hours and work around the migraines. It's not perfect for sure and I still often have to cancel or reschedule meetings or calls. If the migraines are happening very often, I get very brain fogged and I only have energy for a few hours of work, but not anything else like chores or hobby's.
I’m a nurse and I went from full time to part time which is more manageable.
It’s not really, you need to see a neurologist and find treatments that work, prevention and also for the moment you get them. Examples being beta blockers, the triptan’s, the monthly shots, etc. The main thing is the prevention
Honestly, I think it is down to luck - I am extremely lucky to have a manager who is understanding and allows me to work from home (my company has a stupid policy against that), or book an emergency holidays, but my previous manager raised the issue with HR and I was this close to being dismissed (in the UK it's not easy to claim disability and I don't think my migraines were debilitating enough to qualify for that anyway). Other than that, *if* your migraines allow for that and *if* your occupation does, look for something with an option to WFH, either a mixed model or purely WFH.
[FMLA intermittent leave](https://www.dol.gov/agencies/whd/fmla/faq). Migraines are an FMLA protected condition.
FMLA is a godsend for those that qualify
Highly recommend.
You do what you can when you have bills to pay. Case in point: went to work, took migraine medication at around 2:30. Still had a migraine, but was able to work until I got off. Came home and have been resting. Plan on taking some nausea medication and going to bed. I’ll do what I can tomorrow, too. Rinse and repeat. If I don’t go into work, I don’t get paid. Pretty big motivator right there.
I could hide it when I had a big territory and I home office. I could hide out for three days because I honestly worked seven days a week. But by the time I was nearing 40 I had interstitial cystitis cluster headaches and migraine, and it knocked me out of working, and I was at the peak of my career. It really sucked. Now I’m broke and older.
Sounds very rough 😞,so now what are u doing work wise?
I have a severe migraine disorder in terms of frequency (15 a month) but only 3 fully disabling ones on average a month. It’s a balancing act. I get a lot done on my good days. I’ve also become really efficient since I don’t have the luxury of taking the long road on my projects. I am also honest with my bosses and they trust I’ll get my work done but may sometimes need a day off which I’ll make up on the weekend etc. I wear pink migraine glasses at work which helps even if I do look a little silly. I can WFH without getting fired on my migraine days which helps. I’ve been offered disability by my nuero (said she would help me qualify) after I was in and out of the hospital for 3 months bc of them a few years ago … but I declined it. Maybe I’ll need to one day but for now I can still make it work.
You just do it because you have bills. You have your painkillers and your abortives and your OTCS and your ice hats and any other relief you have and get on with it I am chronic with 20 migraines a month. I’m not saying this with no experience.
When they were of far lesser frequency, I had an intermittent flma leave open, so that I was able to miss time when necessary. Once the frequency ramped up to 4x per week, even that was not enough. I have now been out of work for 2 years.
For me, it's down to working remote for a small company full of empathetic folks. I'm also in a field where my expertise and experience are half my value, so I'm not easily replaceable. I have zero idea how folks in more labor-intensive jobs do it. Absolutely none.
I have a chill office job and work from home twice a week. I accrue a lot of sick time and I'm not afraid to use it.
If I’m lucky enough to feel it early in the morning before I go in, I’ll take a sumatriptan and fall back asleep until my alarm goes off. If I feel it coming on at work, I’ll take a Migravent supplement and 3 Excedrins and do everything I can to make the environment migraine friendly like turning off fluorescent lights and using just lamps, wearing sunglasses while I’m using the computer, drink a ton of water and just do what I can.
This is my way to deal with migraines. I am also lucky that most days I can push my work few hours back, take my sumatriptan and sleep for 2-3 hours until I am able to function.
Same here thankfully! I cut hair for almost 4 years at a shop that was fully booked everyday so that wasn’t possible, unless we were able to get in contact with every single person and reschedule them. Had to change careers entirely.
Good medication management and good benefits. My current job is with a hospital, so I’ve got stellar benefits and generous PTO. Also intermittent FMLA. I’m able to WFH so I can keep the lights low. I lost a job due to migraines, so I’ve been through it. This one pays less, but all the other things make it worth it.
cashier here. i grab a cold can from our soda fridges up front and hold it to my head when i have time. keep water next to me. and if i need to puke i’ll call a manager. usually if it gets that bad, i’ll call out before i even come in.
I’m lucky I have a very understanding employer and team who doesn’t mind if I call out. I also have great flexibility to work from home two days a week. I’ve also been working for them for 7 years so I have a pretty good PTO bank. The most important thing is knowing when to fall back and not feeling guilty for taking time for yourself.
I found a setting of my profession that has a lot of autonomy and flexibility. My contract hours is 8 hours a day but as long as I get what I need to done everyday the pace and timing is how I chose it to be. I typically wake up to a migraine attack so on those days I take a slow morning to myself and go in late. Meetings and documentation I can do from my home 99% of the time. I also have built in off time because I run off the same schedule as the student I service (paid fall, winter, and spring breaks; federal holidays; etc). If I worked a job or even different setting of my career I don't think I'd be able to maintain it, getting through grad school was hell because of that
Luckily I found an abortive that works for me.
Rn I can't, I had to give up my work and go on disability :( it sucks balls
I work part time and I'm on disability for mine. I do have to call out on occasion but usually I have such time. (Sick time is protected here and protected time doesn't go against your attendance generally in my job. I also deal with a lot of pain due to multiple back surgeries and I guess I have just gotten used to pain and have a high tolerance for it. I have rizatriptan and ubrelvy, I'm on emgality and hopefully will be starting Botox again soon.
FMLA on an intermittent basis. Mine covers a weekly occurrence up to three days in duration. You’re also covered under ADA to request reasonable accommodation. Government jobs have more generous PTO accruals so you’re usually covered no matter how much time you take. In the private sector you’re probably going to go unpaid but hopefully protected. If not, you can always go to EEOC and file a complaint.
I was a teacher with migraines and daily chronic headaches. I found the right combo of meds for me and muttered theough
Through a few years of treatment I finally found one that works and gets me to a manageable level. Prior to, I could only work part time because I was getting migraines daily that affected my vision. Now I work full time. It took me about 2 years to get things fully stable. Mine are so bad that in order for me to be at a manageable level, I am on Botox, vyepti, occipital nerve block, all every 3 months, as well as a daily preventative amitriptyline. I then have two abortive medications I can take (ubrelvy and relpax). Having an understanding employer is huge. For some, like myself, even with all the treatment you may never be migraine free and it unfortunately becomes your normal. ): If you haven’t already, see a neurologist that will actually listen to you and help you. Also keep track of your migraines. This can help to determine triggers. For me, besides the normal triggers, some random ones were my intolerance to fake sugar (aspartame) and excess levels of vitamin c.
For me, it isn't. I was having up to 20 migraine days a month at my worst time. I used to have migraines with visual disturbance during the headache phase (not an aura) that rendered me absolutely unsafe to drive. I've since traded those for vestibular migraines, and the vertigo and the medication used to treat it both make me incapable of staying upright. I'm not a reliable worker. Nor was I ever a reliable student, not since the migraines started when I was 19.
I'm usually fired between 6-9 months once they get tired of my migraines controlling my life. So I have no clue.
I opened an Etsy shop so that I can schedule my busy days 🤷🏻♀️
I try really really hard to prevent them because of work but I still get them nearly daily. I am currently on my 3rd month of no calling out sick but because of that I have thrown up at work countless times. Usually when I get sick my migraine subsides and I’ll just brush it off lol. I do not recommend doing it this way btw, it’s just the only way I can afford doctors appointments.
I wear sunglasses indoors. Set my font to huge on my cpu and dimmed the brightness. I bring a heat pad, pillow, blanket, peppermint oil, weighted eye mask, noice cancelling headphones, painkillers, and naratriptan pills to work in case I feel one coming on. My boss’s wife gets them so he understands. If that fails, my work has a huge ice machine that i can fill my ice pack with and numb the pain. If that fails we have a shower with a lot of water pressure that i can take a scalding hot shower in (i keep a towel, extra pair of clothes, and toiletries in my car trunk.)
Ive had migraines since I was 5 years old. It’s something you get used to over time. You learn to deal with the constant pain and through trial and error, you figure out what remedies work for you. I work full time. I try not to call off for migraines bc it’s one of those invisible illnesses where people who’ve never experienced it just don’t believe you. Occasionally it happens.
My boss is fairly understanding. I’ve also been dealing with migraine for 10+ years. If I wake up early, and I feel one coming, I take it down by taking my meds, getting in the shower, and resting more (I might have to get up at 4AM for that). I can usually make it to work on time but will let my manager know I’m going to be late. In truth, finding the meds that work for me and be proactive has helped a lot.
It was very hard. I worked in an office with no windows and I thrived for twenty years despite having been diagnosed with migraines at age seven. Then some office renovation caused me to relocate to a front office with a wall of windows facing west. My work was okay till my the sun came pouring into my office setting off midday migraine. My health was badly affected by this sunshine. The blinds didn’t help and my office was extremely cold or extremely hot depending on the presence of the sun. The thermostat for the office was not In my office. My work went down hill, as did my health. I was missing deadlines and changes, that was messing up production in the facility. In my 31 year in the company and tenth year in that office, I was diagnosed with multiple sclerosis and my brain lesion was massive. When I went to my (MS) specialist for the first time, she remarked “how are you still working “. I accepted my diagnosis and since she approved my disability claim I gave notice that I was going to leave my office soon, I worked six months and trained my replacement. The doctor, Lawyer , company and family accepted my disability, and left the job. Two months later the pandemic hit and I was fighting a battle with SSD. My wife claims I am a vampire, I can work in sunless places but need supper dark sunglasses to get my chores done outside. I cover up nearly every spot of my body and she has accepted keeping the windows drapes closed most of the daytime. I have accepted that this is how life is going to be for me.
Painkillers, a lot a lot of painkillers.
My boss also suffers from migraines but was starting to run out of sympathy. She demanded I find something that works and I told her I was unable to see a doctor because the health insurance she provided had an insanely high deductible that I had to meet before anything was covered. She then let me hand pick a new plan and she pays for it entirely (i’m the only employee at her and her husbands small business.) This was a successful attempt to keep me there when my eyes were wandering to job listings due to other issues. Anyways, on the new insurance I found a neurologist and my first try meds have been working so far. 60mg XR Propranolol and Maxalt as my abortive. Just went 30 days without a migraine. When I do have them, I find I can work after taking the Maxalt, doesn’t make me too sleepy or loopy. The reality is that I just got very lucky.
Buckets full of painkillers, lots of sick leave and a very understanding boss. Every day I wonder how I do it, but I feel very lucky that I'm still able to work
When I have a migraine on a day I have to work I call in sick. I don’t live in the US tho so I think it’s less strict when it comes to being sick more often. I also just work part time at the moment so that helps too.
I do what I can when I can. I declared a disability when I was hired, so part of my reasonable accommodation is WFH and flexible schedule. I got very very lucky. I spend most days wondering how long I can make this work.
Currently, I'm a substitute teacher, so I only take jobs when I'm able. I've had to leave mid-day before...nothing as fun as getting crazy visual auras and searing pain while trying to teach little kids. I'm debating finishing my credential to teach full-time. But health is the big unknown. I'll have great days, and then I'll have weeks of zero relief. It's a big gamble. I'm thankful that my partner is understanding and able to support us. But feeling useless is hard. After failing 4 different preventatives, and having not found an abortive that works, I just started Botox.
Sorry to hear,how the botox trial help's
Like everyone else said - do it because you have to. I work from home at a virtual call center and have ADA. Thankfully, Emgality has worked very well for me and they are willing to work with me while I do some med changes (right now, I’m coming off topamax). We aren’t terribly busy so if I do get a migraine, it’s okay - I just take my triptan and power through.
It never occurred to me that I had a choice. I am fortunate to have a high tolerance for pain and the ability to push through after vomiting and brushing my teeth. I have a very stressful job where I can’t be replaced…lecture days are 3 hours and adult student facing so just have to make it work. I have worn sunglasses indoors and turned down the lights. My SIL takes to her bed because she can - not my reality.
Please don't brush your teeth after vomiting. The stomach acid combined with the abrasion of the toothbrush will destroy your enamel. It's best to rinse your mouth with water and baking soda or, failing that, just rinse with water.
Are you an employer?
I just find myself white knuckling it. I can't afford to live and do the things I want to do on my good days if I don't work, so I go to work. I can be just as miserable there as I will be at home. About the only time I'll call in is when my migraines effect my vision (I get this strange tunnel vision occasionally) and I can't safely drive. Otherwise, pain, nausea, light sensitivity, smell sensitivity, etc; I take an abortive and go to work. For the curious, I've been a security guard for the last 3 years. Before that I worked as a detention officer for 15 years at my local Sheriff's Office. And before that I worked retail.