To work, or not to work

To work, or not to work

Working with migraine is challenging even under the best circumstances. We’ve all heard about the need for fragrance-free workplaces, replacing fluorescent lights with incandescent ones, and offering flexible scheduling, generous paid time off, and FLMA. Yet even with generous accommodations, some of us simply have triggers that are difficult to avoid. When I first applied for disability benefits, I took the time to write out a full list of accommodations I would need in order to be successfully employed. Obviously, no employer was ever going to agree to my requirements.  When my current treatment started working, I thought about returning to full-time work. So I pulled out that old list of accommodations to see if any still applied. Here are just a few that would still cause trouble.

Weather changes

An approaching thunderstorm, a sudden cold snap, or even high winds can be enough to set off an attack. I can minimize the impact by staying indoors during high risk times. If I had to leave the house every day, there is no way I could avoid this trigger. If I were to get another job doing home-based therapy, I would be out in the elements all day long and exposed to any number of triggers in client homes.

Performance expectations

I can’t always predict when a migraine attack will strike, but I can guarantee that I will get at least one every week. When an attack starts, I become a stupid version of myself – prone to mistakes and unable to communicate effectively. Imagine if your therapist was suddenly unable to speak coherently or couldn’t remember your name. Yes, that has actually happened to me! One of the big requirements for my former career was strict documentation with hard and fast deadlines. Writing progress notes during a migraine attack is a sure-fire way to get an insurance denial.

Staff meetings

The room is too cold. The chairs are too hard. Every stinking florescent light in the room just has to be turned on. The co-worker sitting next to me smells like she bathed in perfume. There’s a sign-up sheet for after-hours volunteers. And the whole thing just goes on, and on, and on…

Uniforms & dress codes

It’s bad enough that shoes and undergarments are required (both disappear quickly during a migraine), but they expect me to show up in dress shoes, slacks or skirt, with make-up and a nice hairstyle. Um…how does that go? Ain’t nobody got time for that!

Ergonomics

I have a beautiful home office. It gets used for 1-2 hours on a good week. The rest of the time I can be found in various places throughout the house, ice pack strapped to my head, hauling a laptop and migraine toolkit in my pink polka-dotted backpack. The reclining seat of the sectional is usually where you will find me. Sitting upright at a desk all day is NOT going to happen no matter how “ergonomic” it is.

Crisis management

Clients can call or show up in crisis any time, even if it’s your lunch hour or time to go home. Skipping meals, eating on the run, and generally ignoring physical needs is just part of the job. The state board isn’t going to care that I took time out to eat in order to prevent a migraine attack if my client makes a suicide attempt while waiting.

No job in my future

Reality hits hard. Given my specific triggers, there is still no way I could return to a full-time counseling job without risking a worsening of migraine. The relief I feel is largely due to the accommodations I can make for myself at home. Trying to restart my career would be a mistake I can’t afford to make.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (47)
  • Susan C
    3 years ago

    I worked for 25 years. 19 at the same company. I got sicker and sicker. I fought for special accommodations required by ADA law but learned the law is full of loopholes. Accommodations have to be “reasonable”. There is nothing “reasonable” about the accommodations for migraine. Today is the 2 year anniversary of me not working. I have yet to get SSD. I have 15 years of migraine documentation but again, loopholes make most of it irrelevant. I’ve got a hearing scheduled in July to fight the 2 previous denials but things do not look good. It is awful to become dependent on others. I had my own career, owned homes by myself and raised a kid with no child support or welfare yet here I am. Unable to support myself…and I had even planned for this with private disability insurance. But loopholes allowed them to drop me too.

  • hthr1972may
    3 years ago

    Totally agree and am dealing with this now as a high school special needs teacher. More days than I’d like to admit my migraine or brain fog whatever it is slows my thoughts and speech down. It’s very painful and embarrassing. ..hurting my job performance and I don’t know what to do about it. Thank you for writing this letter.

  • Debora Stamper
    3 years ago

    Thank you for writing this. It’s as if I wrote it. Since we have so many similar triggers, I forwarded your article to friends and family, and received supportive responses. I often feel judged for not working ( even by doctors), and this article tells me I should not feel that way.

  • Amy Thomas
    3 years ago

    I have been completely miserable this past week. I started on the botox injections in 2014 and it cut my migraines down from 5-7/week to 2-3 per week. But I noticed lately that now they are much more intense and had one that started last Wednesday and last until Sunday. I manage the pain and symptoms pretty well, but when I start throwing up I am done. This week I still feel like I have a migraine and just wiped out. Anyone else have problems after using botox for a while? Thankfully, I work nights at the hospital as a counselor in the ER and most nights aren’t too busy but it can get very busy and if one kicks in, I have trouble talking with the patients and the doctors. I am applying for FMLA again and hoping for some other relief. Would love to help any suggestions from others that do shift work and how you manage, because considering going back to first shift to get on a normal schedule.

  • Susan C
    3 years ago

    I did Botox for 18 months. 6 treatments, every 90 days. While my neurologist acted happy that I had about 3 less migraines a month, I was still having about 20 a month so why bother? Botox changed my facial features and made me very uncomfortable with my appearance and cause my forehead and neck to be extremely fatigued at the end of the evening which was just as bothersome as a migraine. So I decided it was not working for me and discontinued the treatment.

  • Tammy Rome author
    3 years ago

    I have heard of others reporting that Botox stopped working over time.

    ER counseling is a tough job. I don’t envy you. Any chance you could find an office job where you can deal with scheduled clients instead? If you do decide to return to first shift, try doing it after some time off via FLMA so you give you brain time to adjust to the different sleep schedule.

  • marti
    3 years ago

    Everything about work was a trigger – hours in front of the computer, the guy who wears too much cologne, fluorescent lights, truck exhaust from the loading dock downstairs, the noisy office – and then we found out there was black mold in the air vents! They made an attempt to clean it, but still…
    My migraines were getting worse and more frequent. And then last year, the company decided to shut down my location. Fortunately for me, I got to keep my job and work from home! Since December I’ve been working from my quiet, softly lighted, home office. The migraines have improved, and I can adjust my hours when I need to. I can take a nap when I’m in pain. I hate it for the other people who have lost their jobs, but I feel extremely lucky.

  • 3 years ago

    Loved that this was posted-sometimes feeling like the only one and hating yourself for it is the worst. After reading all this and having been part of the workplace with a son whom is considered ‘unemployable’ in many ways due to his being part of the lgbt group, I have to be real here. It’s tough these days to get a good job no matter what condition you are in or whom you are. I’ve known people whom have had more accepted medical conditions (blindness, deaf, etc) and have waited years for disability to help out. I can say having migraines is the worst to work with first and foremost because you don’t get cut a break or empathetic help from anyone whom doesn’t understand that a migraine is more then a basic ‘headache’. My son is transgender. He has problems with even getting positions for just this but he also recently turned 18. On a very flip perception to this, he began getting severe headaches when he was 16. Tough because he was going through so much that we weren’t able to get a real answer as to if it became migraines-he kept to himself and shut in a room. It did affect his schooling. However, when he turned 18, he began his t shots (f to m) and the shots actually made the headaches almost completely disappear. So far he has other symptoms but not this-hoping that cancels the hereditary migraines. He got a part time job and it is pretty much around his schedule-not professional but brings in some money. I know it seems different but it’s how I sort of see the troubles I and anyone are having with work and migraines. Most places won’t accommodate any circumstances for any kind of illness but the basics and cheapest. You are lucky if you can find something professional that will but I can’t think of a worse day then being in an office with a pc around me and people seeing me when I am feeling my worst. I was able to get a scholarship for a good school and a job offer helping some elderly I have fallen in love with seeing every day. There is no chance of that. I have to be real here. My son has to be real with his life for now until things change as well. There are limits and it’s about trying to find the moments that I’m not down and feeling like I can’t get up. I have to adjust; my son, mostly a person I am so proud of, has shown me that. I’ve seen him down when I didn’t think he would get up either and at an age too young. I think it’s just as important to remember that the worst is to not feel like we have control or options but that we are easier on ourselves. Most days I can’t find a way to feel hope but then there are a few that I remember there is a little in moments when I feel lucky to have my family. And that I’m not alone.

  • rlc25e
    3 years ago

    Remembering that I am not alone has been a big help to me too. Thank you for sharing

  • Tammy Rome author
    3 years ago

    Thank you so much for sharing your story. You and your son are courageous and strong.

  • Tamara
    3 years ago

    But what do you do when you are single, own a house and 28 years old with severe 24/7 migraines that nothing is working on? Seems like there is no options …

    No option to move back home due to severe food allergies, family has no extra money to help and my boss has carried for almost 2 years when I’m only able to work 1-4 days a week (and not full days either) but still getting full time pay. I have literally cut everything unnecessary from my budget but when you have a grocery bill of $150 a week for one person, a cat with severe allergies as well there needs to be a certain amount of money there. And rent is more than my mortgage in Calgary and surrounding areas. :(.

  • Tamara
    3 years ago

    yes I found a community doctor that has a lot of knowledge, specializes in holistic pain management – he actually does more botox on migraine patients than our headache clinic because of his scheduling. the headache clinic is short staffed and only covered for 1 1/2 days a week for the neurologists … for the entirety of Alberta!! I still have another year to wait (2 year+ wait since sending in paperwork). I just did botox for the first time today, and have my second dose of prolotherapy next week …. hopefully there will be some benefit.

    I do not have disability insurance and didn’t think of that when I moved to this small company and considered a “contractor”. My boss wants me to go to part-time but then I need someway to supplement my income and not sure what to do. Sleep is very bad, diet sucks, not able to exercise, no social life what so ever, and life is reduced to attempting to sleep, work and take care of my pets and me. Depression and anxiety are flaring up badly so I do need to cut back the work, but I can’t live with half pay and still do all the things that are helping me – chiro, supplements, meds, acupuncture etc …. sigh …. love problems with no answers.

  • Tammy Rome author
    3 years ago

    I am so sorry to hear that you are struggling with such frequent migraines while trying to work and support yourself. Just a couple of thoughts for you to consider…

    1. What kind of doctor are you seeing for your migraines? Seeing someone who specializes in headache disorders can make all the difference in the quality of your treatment.

    2. If you could find such a doctor, would it be possible to take short-term disability leave in order to improve your health with the goal of returning to work once the migraines were under better control?

    Just some thoughts to consider. I really do wish you well and hope for better days ahead.

  • terri64
    3 years ago

    I was fired in January due to performance issues relating to my migraines. I had a high stress/high volume job and I just couldn’t keep up since I am having several migraines a week. I refused to take any time off because I didn’t want to put my work off on my co-workers and I hoped they see that as a positive. In addition, I’m Topamax so it scrambles my brains and slows me down. I’m on Botox which has helped to lessen the intensity of the attacks. I’ve applied for disability and I’m waiting to hear back. I’ve been applying for jobs but I honestly don’t see how I’d be able to hold down a job if I get hired. The migraines are just too constant and my brain is too fried. If the pain and pressure are get too much I end falling asleep while I’m typing or reading.

  • Susan C
    3 years ago

    If you are applying for jobs, you will probably get turned down for SSD. I worked 25 years, almost to death. Have 15 years of migraine documentation including having surgery. Been denied twice and took 18 months to get a hearing scheduled. Still waiting on the hearing date but it seems the government has supenoed someone to testify against me. So it doesn’t look good. But the big thing was if they think you can work or will try to work, they will deny you.

  • dragonflylass
    3 years ago

    Every day I feel the frustration of not having a choice. My husband works full time. But we also need my full time income. I calculated what I could receive on disability, including the allotted amount for minimal work & it simply wasn’t enough.
    My job allows me ADA accommodations & FMLA, but begrudgingly… they act like it’s such a hassle & I’m causing so many problems. I was finally approved to work from home. The rest of my department already did, but they wouldn’t allow me to because of attendance issues directly related to my chronic migraines (and documented as such). Finally with HR pressure & my doctor flat out writing in my ADA paperwork that I needed to work from home, they let me. But, my job tasks have changed so much that my condition is exasperated instead of improved.
    I’ve tried to get a job elsewhere for several years. But it is very hard when you either have to lie to get past the online application process almost all jobs have now or you have to be honest & know you will likely not be called. They say disability can’t be discriminated against, but it’s easy when you are making a list of job requirements. Mandatory overtime is the first one. It’s also easy to fire a disabled person because you don’t like how much time they are taking off, even within FMLA guidelines. In at-will employment states, all they have to do is say you aren’t meeting goals, expectations, etc. Brain fog can put most of us in the danger zone quickly with that. And most ADA paperwork only allows for a change in work expectations for mental health reasons, not physical (although they often coincide).
    It’s also hard to find a job that will either let me work from home or near my home. Then there is the matter of FMLA. You don’t qualify until you’ve worked for a year. But your illness doesn’t magically stop.
    So what is the answer?
    How do you get out of a toxic work environment?
    How do you find another way to make enough money that will be better for you?

  • TrishaNP
    3 years ago

    For me it has never been an option not to work. I have to work. My husband is disabled and we are going thru the process now of getting him approved for assistance. My main goal has been how to get through the day. I work both on the phone and on the computer. There is no option to work from home. I have an emergency migraine kit at work that consists of change for a Mt. Dew for a shot of caffeine, baggies for ice, sunglasses, and my migraine meds. In addition to the prescribed meds that always make extra tired and sometimes cant knock out the migraine, I have Tylenol to take later in the day until I can get home and take a second dose of my medicine that will put me asleep and hopefully help with my migraine. Most of the time, I have to go to work after having a migraine hit in the middle of the night and I am exhausted. Because cluster migraines are a sporting event for me,the pacing, erratic cleaning,and crying, nothing like daytime migraines where I just want to sleep. My body is sore like I ran a marathon and my brain is drained like I just pulled an all nighter studying for final exams. Work is extra long and hard. My performance has suffered, for lack of attention to detail. When I explain to my supervisors about my migraines they all reply that well you look fine now. As I sit there with a pounding head squinting from the bright lights hanging above. I just say I will try harder and accept responsibility for what happened and make notes to avoid that error the next time. Co-Workers think that I am shy; I am actually far from it but, when I am just so tired and grumpy I don’t want to bite anyone’s head off so I just stay to myself.
    My fear is I will always have to work no matter how bad it gets. Yes, I can use sick days and call off but then what happens when I get really sick? Or something happens to my husband? He is visually sick (on oxygen and other visible disablilties) and has been denied disability twice and now we are going through an attorney to get his assistance. I feel as if until my head explodes there is no option for me but to work. It is not a poor poor me party, I am used to it. This has been my life since I started working. I have never thought about getting any type of disability assistance for my migraines. The only thing I really wish I had was more paid FMLA to take off on those really bad days. Sometimes I really just need to rest. People who don’t have migraines don’t appreciate how much rest your brain needs after it has been agitated. And they really dont understand how hard it is to explain why you need that time to sleep.

  • 3 years ago

    I’m so sorry. I completely know every word you are saying-so sorry you live that life too.

  • Andrea
    3 years ago

    I’n an LCSW-R in New York City with asthma and chronic migraines. I get 5-6 migraines a week of varying severity. I work full time. My employer allows me time off every two weeks (approximately 3 hours) for an appointment at my headache center to receive my nerve block injections an/or Botox injections. They are also purchasing glare screens for the three computer monitors I work with. I needed to take a week off this past January when I was hospitalized with an intractable migraine. I’ve been using the Cefaly every morning for 20 minutes for 6 weeks and it seems to be helping. I get physical therapy once a week from a PT who is a headache specialist. I use Topamax for my preventative medication and sumatriptin injection for my abortive medication, but my insurance only pays for 8 injections per month. My biggest trigger is stress, which admittedly I don’t manage that well and which I get plenty of from my job. My other triggers include missing a meal or snack, too little sleep and a drop in the barometric pressure – two of which I have control over.

  • Kaynaydian
    3 years ago

    Thanks so much for this article, Tammy!

    Our jobs make up such a big part of our identities so when we are unable to work, we lose some of our sense of self.

    I wanted to go back to work so badly! In fact, I tried really hard to make it happen. But it just wasn’t working out. Even with medications to keep my migraine pain at bay, the side effects of brain fog, fatigue and all the rest just made me a really unreliable employee. And that isn’t fair to my workplace or my coworkers.

    It has been a blow to my self-esteem and my self-worth to think that I can’t just persevere. But I have found value in other things like migraine advocacy and promoting support in the migraine community.

    I think it’s important to be aware that whether you work or not, you are still a worthwhile human being.

    Karen

  • Maja
    3 years ago

    Tammy –
    Is is a difficult process to get disability? I haven’t been able to work for many years now. I never tried to apply for disability because I just didn’t think it would be accepted. I worked as a teacher and that isn’t something where you can have an off day. Your post was very inspiring and supportive. Migraines aren’t our choice. We would love NOT to have them

  • rlc25e
    3 years ago

    I’ve had a lawyer for well over a year and am no closer that I know of to getting disability. Make sure that your doctors will be supportive. I had three go on sabbatical and had to find new doctors during this process already. Good luck!

  • Tammy Rome author
    3 years ago

    How difficult it is depends on a lot of different factors, including supporting medical records, history of disciplinary action at work due to absenteeism or poor performance, whether or not you present as believable, etc. You can apply on your own, but it might be worth a conversation with an attorney who is familiar with how your state processes applications.

  • Julianne
    3 years ago

    My job retired me so I could keep my health insurance but officially I was “Terminated Due to Medical Inability.” That’s what the paperwork says. (It sounds like I was fired but I wasn’t!) Even with that, I’ve never been able to get disability. From everyone I’ve talked to, they said it’s worth it to get a lawyer because that’s about the only way you’ll possibly get approved with a condition like chronic headaches.

  • Jani8
    3 years ago

    Yes, you can apply for disability. You can either fill in the paperwork or hire an attorney. Depending on how long you haven’t been able work, you could also get a settlement, but I’m not sure how far back they will go.
    I went to an attorney after I was denied. He helped me get all the stuff together and presented it. We then had a hearing and I was awarded disability. He took his fee out of the settlement so there were no retainers or fees. I am not an attorney or advocate or any kind of professional. You need to consult Social Security or your own attorney for any legal advice.

  • rlc25e
    3 years ago

    I have to say that I read this at just the right time. I have been feeling somewhat guilty and pressuring myself to get back into the work field instead of waiting for disability to finally grant me some assistance. I have two teenage kids! I hate that my husband has carried the financial burden since I lost my job in 2010/2011. I cannot fathom anywhere that would be able to accommodate my needs to avoid triggers. Thank you for posting this and reminding me that I am not doing anything to feel guilty of.

  • 3 years ago

    I am only replying because I feel strongly about this; every year I try to get through pushing with work-I know it’s taking time away from the end of my life. From my family first. If you can get disability-get the help!! I know the feelings of guilt with a spouse for leaning too hard on them. It becomes worse when you work through them and I can’t tell you what life becomes but it’s absolutely horrible to your family. Don’t forget that-I wish the option were open to me but for now I am even leaning too heavily on my spouse. It’s much worse if you don’t take that option-believe me.

  • D.Manning
    3 years ago

    Hi Tammy, what a nice post you wrote! Although I still work, I relate so much to everything you said here. It is tough. My job has made accommodations for me and that is really awesome however, you cannot change the weather or those days when you are just plain “stupid” because of a migraine. Thank you for a great read!

  • Tammy Rome author
    3 years ago

    You are most welcome! I worked for 25 years with Chronic Migraine. Some employers were supportive and others, not so much. When other health problems complicated the picture, I just couldn’t do it any more. Out one day for migraine, another for fibro, no sleep for 3 nights thanks to cluster headaches…it was just too much. I’ve read that most people wait too long to think about disability. That was certainly true for me.

  • Cocodog
    3 years ago

    I just discovered this site.,And I thought I was the only one stuck in the house on disability for migraines for 8 years. What a relief to know their are others, sadly, in the same boat. I tried to improve my health enough to return to work as a pediatric nurse practitioner. Nothing worked. Computer use now makes me sick. Any part of the job would make me sick. For that matter, any job would make me sick. I have PTSD from losing my career after 20 years. Then I discovered I have Erhlers Danlos, Postural Orthostatic Tacycardia Syndrome (POTS) with 4 or 5 day flares in between 10-15 migraines a month. And most recently, after seeing a POTS cardiologist who does a full work-up, I discovered this week I have a heart arrhythmia that could kill me at any moment. Fixable, maybe. During the past year, I started to accept I’ll never return to work. Thank goodness I have a good therapist who keeps me from feeling so useless I want to kill myself. I’ve been at that point before. I’ve turned my medical journey in to a spiritual journey. What else could it be? I have to give this illness meaning, unless I want to be meaningless. I’m on this journey for a purpose, whatever that is. I have faith I will discover the purpose someday. Maybe helping others with the same issues. I’ve learned to never give up searching for an answer to my illness. I wouldn’t know about my heart if I did.

  • Julianne
    3 years ago

    Casper6, I can’t believe in a god that would make people suffer like this for no productive reason.

  • Casper6
    3 years ago

    Do you wonder why some of us are cursed with Migraines? I have often asked God “Why me Lord! What did I do to have this uncontrollable migraines?”

    I don’t have an answer, but God is there with me when I need help battling through one of my headaches. However, all that I have learned I am able to help others. My own kids are starting to show symptoms of Migraines, and I tell them what works for me and for them to try.

    I know the suffering and pain feels like it will never end. Perhaps the purpose of all who suffer is to share what they know and experience. Then maybe one day the medical field can locate a cure for those debilitating headaches.

  • Cocodog
    3 years ago

    There, not their! Sorry for the typo, or brain fog mishap.

  • JanetH
    3 years ago

    So far, so good, on being able to work. I’m an administrative asst., and at present, have my desk in the back of a quadrant, with 3 other very good co-workers. I’m near the window, and the guy directly ahead of me is very easy-going as to window open/closed, shades drawn/open, etc. I used to have the luxury of having my own office, but am making this work. I only have to drive about 3 miles to work, which was a deliberate plan of my own and my first husband’s. I am having more frequent headaches; think it could be menopause. For example, just 2 days ago, I started out the day with upset stomach and then blam, headache. I will say that I believe firmly that migraines have kept me from advancing more in my field (educational administration). I’m not in a bad place, but am reluctant to take on a higher level job with more stress than I already have. I’ve had a few people suggest I could apply for higher level work, and I really don’t want to go into my reasons as to WHY I don’t. So, I count myself lucky every day I make it in and through a day.

  • Momtosocks
    3 years ago

    As my chronic migraine severity has decreased, I too have thought about returning to work. Like you, there are so many things I can’t control like the weather, strong odors, quality of my sleep, stress and the amount of and kind of light I’m exposed to that it just isn’t realistic for me to go back to work. It’s sad because I love being a nurse. At the worst point of experiencing symptoms I had trouble with my memory, speech, word finding, expressive aphasia, weakness, dizziness, pain and nausea. Many of my symptoms were attributed to chronic fatigue syndrome but could also be due to migraine. I have migraines every day. They are of shorter duration and less painful but still disrupt my life. So I do what I can to prevent them. When they occur, I spend a lot of time in my darkened, quiet space, doing what I can to minimize them.

  • 3 years ago

    You hit on a my life already and now our greatest fear for our future. Some of my female relatives just couldn’t do it after so many decades of progressively worse symptoms. One had a very understanding employer; not only helped her with her disability claim but also set her pension and early retirement up for her while the other gets minimum for benefits and is living not so well after just having to leave her job.

    I was a school bus driver for over a decade when they began hitting. The last year was truly torture. My migraines seem to be hormonal but this took me years to figure out. They have become increasingly severe and less treatable (meaning even a few moments of relief from the pain) every year. Six years ago, a strange sort of flu hit me and had me in the hospital for a week. I have no clue what this did but I can pinpoint the worst of this to that time. After, progressing most in the past 4 years, I know a sort of pattern. Seven days before my time starts to the day. My husband and I track it every time. Some days I have a period every 2 weeks with all symptoms and migraine then a week’s relief and then back again. The first part is this strange flu-it begins with the smells and the total drain of energy. Second day I am hit full force with every infection my body can have and the migraine hits usually late that night or as I wake up for work. I also have a urinary tract infection that hits me hard for day 3 and 4. I still can’t believe this but this holds on time without fail and has for years. The headaches are bad the first day but by the morning of the third day, after a whole day of the migraines full force, I have gotten to bang my head to try to find some relief. The third day brings depression and real feeling of uselessness and humiliation.Lately it can become suicidal. I get angry at my husband for being near and seeing me this way and he just loves me. It makes me want to not make him go through this so much. Do I work? Yes. My job is a newspaper carrier 7 nights a week. I deliver over 600 houses and have come to really love it. My husband left his job with early retirement and we both run literally from midnight (10 pm on Sundays) up until 6 or 7 am delivering. Tight time limit and we do our own re-deliveries if we miss someone the next morning. I DREAD the time these migraines hit. They last literally 5 days with the actual migraine full force without fail. No relief-Dr’s have tried everything and I don’t have the insurance to keep paying more years to the bills already paying on. We literally will stop with a bucket we take so I can throw up on the two days when they are the worst before they stop. My husband takes on so much of the physical part but I push to help. And we are really frightened of what we do as this is getting worse and worse every month. The first two years, there was always hope. Next time it can be shorter, next drug can help. We found one drug that did cover them but when I took it I was throwing up so violently that blood came out. I had to stop. I can’t focus, the same as what everyone else says. My husband doesnt really do so well with the houses themselves and remembering, even after these past years, so that part is really on me. He hates that and we’ve tried but it falls on me. During this time, I will be at a place driving by and then not know where I am some moments. I lose a lot of time-this job has more stress then you think and our contracts are tight. We have a time limit and we can’t have more then 3 complaints or misses a week. Even then they aren’t so nice about it. But on the nights I get my migraines, no one sees me be my worst except my poor husband (someone whom gets very little for how much he goes through and gives me). I’m hitting menopause. The Dr says it will even go worse or there is a slim chance it can be better. They are trying to substitute hormones but not finding the right balance. So we are only wondering what happens when we can’t even do this job anymore? There’s nothing I think I can do work wise. We’re saving all we can and we are trying to keep our ducks in a row with a simple life for stress reasons but not sure what can be enough.Just had to post to people that can actually understand how much of your life you feel you lose with this.

  • Piglet
    3 years ago

    One of the biggest problems for me when commuting daily was the driving itself. I live in an area withou public transportation and have a white knucke hourling drive, mostly over water. Now I work four 10 hour days, with three at home. I was headed for disability before the work at home policy started. I would desperately try to function with Cefaly, lavender neck pillow, non-drowsy meds, chiropractic over lunch, and squeezing a cheap zero gravity lawn chair recliner in my office. Lights down, ergonomic review of my work situation including taking the arms off my task chair so I could type in a proper position. That helped my neck pain, and my neck pain is a major trigger (hard to say whether the neck problem causes migraines or vice versa). I could not control the fact that I work with two computer screens in my face and type all day. Often, people would misunderstand me, and I would have trouble with word finding. Much better now at home, because as you mentioned, the interaction can be very difficult and I can be alone here. I have also learned to NEVER turn in work done while I have a migraine until I have a chance yo look it over when migraine free. Still, migraines were becoming more frequent and I could rarely get through a week without using some sick leave, which I hoard as much as possible for when things get really bad. I thought I was getting along ok, not the best or worse employee, but I had radiofrequency ablation of several neck nerves in December and have gone from chronic to episodic. This is a temporary solution. I will ride this out but I have decided that even with all of the above, when I become chronic again, I will try for medical early retirement. It is all so exhausting to keep working with migraine even when you have all the accomodations possible.

  • mrst53
    3 years ago

    I once had a neuro doc that had migraines and what a blessing to finally find a doc that finally understood. His wife also suffered from them. I did have 1 employer who understood my migraines and I could close the door and put a sign on the door- do not disturb. Eventually, the headaches and other problems became so bad, plus the depression made me “unemployable”. I have that volunteering does help. If I have a bad day, then I call in sick. I have migraines due to the weather and I don’t even have to go outside. Stress brings them on and of course MSG. We are in the process of looking for a new home and my DH has severe depression and PTSD from Viet Nam. I have been married to him for 43 years and I love him dearly, but by now, I have secondary PTSD. GREAT! More stress. I try to meditate to relieve the stress and walk when I can and eat a healthy diet, but we all know, that the MIGRAINES have a MIND of their OWN.

  • calicatch22
    3 years ago

    I have an hour until meeting with my vocational rehabilitation counselor. This article is perfect timing however it isn’t very encouraging. I know it’s true though.
    I am fighting with myself every single day and can’t rest until I am able to find a paying job again.
    It’s such a devastating thing, when you NEED to provide for your family, you have bills but can’t function because of something nobody can see, nobody will believe and nobody will respect you for until becoming a productive member of society again.
    I’ve tried church after church for encouraging efforts and even then sadly, I am shunned. I don’t blame anyone because it’s understandable but hurts just the same. I feel like I am a waste of space, money, everything, being on disability but look “Normal”… everywhere I go(when I can drag myself into daily life outside of my bedroom cave)I am treated as an outcast and walk around like a ghost to everyone. It’s a miserable existence.

  • Tammy Rome author
    3 years ago

    I’m so sorry that you are feeling so discouraged. It’s tough looking for a job when you’d really like to admit, “I’m going to miss work…a LOT. I can’t help it and I can’t predict it. I will do my best to be here and will work hard when I am here. I just can’t make any promises.”

    I get the whole church thing. I’ve been shunned, neglected, and ignored by my faith community, too. Yet…I still have faith. 😉

    I know this is probably too late for your meeting, but I was wondering if you’ve thought about a work-at-home option. Maybe something that pays you “per job” rather than “per hour” might be a better fit.

  • Luna
    3 years ago

    Tammy, this is way off topic but the answer might be of interest to others. Received an email from noreply@migraine.com subject [migraine.com] new friendship request from ………. There is a possible screen name there but will not disclose it now in case it is legit. It is not a name I remember coming across before. I do not open questionable emails so am wondering if this really happens on this site?

  • Joanna Bodner moderator
    3 years ago

    Hi there Luna,
    Thank you for posting this question. If you don’t mind, I’m going to follow up with you via email directly to be sure there is no “spam” possibility here.
    Joanna (Migraine.com Team)

  • Luna
    3 years ago

    Thanks

  • Tammy Rome author
    3 years ago

    Yes, users and admins can send and receive friendship requests from each other. Typically this happens after users have had conversations in our forums. While not active at the moment, users will have the capability to send and receive private messages to each other. Several readers have done this with me when they have questions they’d rather ask in private.

  • Josiezee
    3 years ago

    I was just told by my Voc Rehab counselor that my idea to find an employer who could be flexible with my attendance was “not realistic”. I really want to prove her wrong and find someone who will work with me. I know I will never go back to working as a paralegal, but I can type and file and do other office tasks. I also am working on finding meaning and purpose in my life without work. God bless anyone who is living with migraines!!

  • Music
    3 years ago

    This is so true. Yet my disability has never been classified as permanent and I always have to prove that Im still getting migraines.

  • Josiezee
    3 years ago

    It really helped me to find a doctor who supported my disability claim. Good luck to you!!

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