For those of you with frequent hemiplegic migraine attacks (several times a week) what do you do for work? I had my first hemiplegic migraine last week and have had a few since. I get full body symptoms, which makes me completely unable to move or speak properly for several hours at a time and I’m worried I may have to quit my current job as a barista because I can’t be counted on to show up/work a full shift if I have an episode. Looking for suggestions on what kind of job I could be able to work, any ideas welcome!!
Can I DM you?
Sure, but I don’t answer medical questions or anything like that!
lol I wanted to ask you about your career journey, because my degree is in neuroscience. I have plenty of doctors for my medical questions😂😂😂
Oh thank god - I get people from the migraine subreddit DMing me allll the time because my flair is neuroscientist 😅
lol I’m not completely surprised by that
I get 2-3 monthly and honestly learned to work and live with them. I will tell you my last job (out of work right now) I had SEVERAL migraine attacks b/c of my boss' management style and certain volunteers who frankly were super controlling and problematic.
I've done fundraising, political management (seriously!), retail (absolutely the worst choice), non-profit management, event planning, volunteer coordinator.
Currently getting them almost every day. I manage data systems for a school district (about half computers and problem solving, half emotional support for school staff). I made a few underwhelming career changes to get here, but am grateful for a job where I can lay down when needed and have access to intermittent fmla.
I had to quit my job and stopped working for a year when the whole thing started. I then worked in an office for a while, during which time I tried different medications and it slowly became more controlled. My attacks became less frequent and less severe. But it was / still is a journey… I decided to change jobs again - the office is just not for me - and I am now working as a teacher.
I have had to quit positions as well. But now I do multiple types of preventatives to help ease the severity of my attacks so I can work through most migraines and take rescue meds to prevent more severe symptoms when things start getting bad. It’s not perfect and working part time seems to be ideal for me.
I’m unemployed because of mine 🙃 so here for these ideas too!
Hi, I was a barista when my attacks first started too (over an understaffed christmas period) which I attribute to the amount of light and noise and stress in a coffee environment. I hung on until May and then I quit, weekends would almost always trigger an attack and that wasn’t something I wanted to keep up. I’m currently doing a (UK) government funded course to get into software development with the hopes that I’ll be able to work from home. I still get 2-3 attacks a month at the moment and I struggle a lot with vertigo when I’m outside. I’m not incredibly passionate about software dev but, until I get on the right cocktail of preventative medication, I’m only looking for a job I can do from home or hybrid work. Even then, I might have to be on part-time only, I’m just playing it by ear atm. I hope you find what you’re looking for!
i work from home doing customer service for insurance companies. Very easy to just log off and get into bed, take meds, sleep when an attack comes. Working in office put me in the hospital.
Hey! I have been considering going from machine operator to office work, so I'm curious. Was it the work that put you in the hospital or the people? Just asking because now I'm worried I'm making a bad choice
my migraines put me in the hospital. can’t lay down at work. had to go get a migraine cocktail. at home i can just log off and make my own cocktail and go to sleep.
I’m a video editor, which can make days difficult since light is a trigger, and video is all about the presence and absence of light in an image.
I think you having these types of migraines so often is a concern though. I’ve always been told to limit the amount of hemiplegic migraines, since you could lessen your stress to stroke symptoms and not seek help if you actually have a stroke one day. The daily medications helped a lot with my pain levels.
I also recently found out that my migraines were a result of 4 pinched nerves in my neck. Finding that out was very helpful, and a lot of painful massages and PT later - I now have maybe 1 migraine every 2 months. It’s crazy!
I’m a kitchen expo. I’ve been at my restaurant and position for 10 years and am good at my job. They have been very good working with me.
I had my 1st HM almost 8 years ago. I will say my 1st one was horrible and ebbed and flowed for a week or 2. The paralysis would ease up for a few hours, I wouldn’t be as foggy and then it was like a switch flipped and it was back.
I’ve only had a few really bad ones like that 1 over the years. My right side of my face droops up to 2 days a week but I’ve been lucky that the dog and paralysis of my right arm & hand rarely happen.
I’ve cut my hours down to about 20 a week because of these migraines. I am getting close to 50 though, so I don’t mind so much. Kitchen work is hard on the body, as you know by being a barista. I sell on eBay, Etsy & farmers markets for extra income.
I’m lucky. My migraines are not affected by light. It’s all sound and some good earplugs help ALOT
I am currently on paid leave pending an appeal hearing to keep my job. If that doesnt work I will be on unpaid medical leave for the next year. My hm is chronic and I have the droop consistently with 15 + hemiplegic episodes a month and that's an improvement. My work is doable from home, i am a geographic information systems coordinator (think database administration for geospatial information and map making) but my employer is in the public sector and since I cannot work in office or in the field I am considered a liability, as they said. Medicines and dietary changes have helped a lot, today is the first migraine free day I have had in 7 months so definitely helping! So hang in there, its rough but it can get better.
My suggestion for work though, while you are getting your hm training wheels sorted like I am, is part time remote work that you can do from home. With a flexible schedule. There are a number of remote data entry, virtual assistant, and customer service type jobs out there that might tide you over until you get your feet under you.
Part-time call center job.
I’m a neuroscientist that’s now in biotech/pharma patent law. I work from home, which is the only way I’m able to have this career. I spend a lot of days in bed, just typing with my right hand, reading with one eye closed etc etc.