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Living with Migraine

Working Full Time with Migraines

  • By Anonymous

    As a long time migraine sufferer working has always felt a bit alien to me. When
    I get my warning (which is aura) I take paramax which does help the pain and sickness but the aura still stays until it wants to leave. For me this is the worst part of a migraine. As an anxiety sufferer aura always sends me into panic.

    I work 12 hours a week at the moment and we are always struggling with money because of this. I know if I worked full time money would be soo much easier. We would have a better social life, holidays etc. I just worry I can’t do it.

    Just wanted to hear from other migraine sufferers what they do when they have migraines at work. Do they go home? Do they just carry on and try to ignore it? Does working increase or decrease your migraines?

    My brother also gets migraines and works full time. When he gets one at work he just seems to carry on. He is much stronger than I am that’s for sure!

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  • By Ellen Schnakenberg

    donnielou

    I wanted to shoot you a quick answer so you know your post is being read. Hopefully others might chime in soon.

    I had to quit one job because I was an emergency dispatcher and worked nights, which was the best environment for me and my Migraines. However, people’s lives were on the line and my aphasia was a game-changer. I fought with myself for a few weeks, but then learned my shift was being transferred to another office, which made my decision much easier. I was offered a day shift, but I knew this wasn’t going to work because of the aphasia, so declined it. It was the right choice for me.

    I also worked teaching preschool and kindergarten kids, but it was a team experience, so when one didn’t feel well, the others pitched in to make it easier on the one that was sick. It was an ideal situation, especially when you consider my kids were my students too, so even though I was working, I was also still a full-time mom, which was my goal.

    In a nutshell, to stay working, I had to change my jobs to suit my health. I can’t control my health, but I can control my other situations. I can control my job. My home. My choices of hobbies and entertainment etc. For me, this meant self-employment at a certain point. Eventually I had to stop that as well, which broke my heart. Now I work helping patients online. I do what I can do, when I can do it. My pay is mostly emotional however, and if this was my only way to survive, I’d be in big trouble. Thankfully my husband has a good job and although things are very tight with my health issues and bills, we are doing okay.

    Working as a writer doesn’t increase or decrease my Migraine attacks, because I am intimately in control of my situation. I have a home office, and we did some serious renovations to maximize my Migraine management by eliminating triggers, so it’s an ideal environment for me. Not everybody can do this. Working outside of this type of controlled environment is not an option for me. Unfortunately, not a lot of employers are understanding of this here in the midwest where I live. I have had chances to work doing what I do best, but when told I needed to tele-commute (work from my office most of the time, avoiding triggers) I have been told they needed someone in the office all the time, which isn’t an option for me. It’s depressing, no doubt, but it’s not in my control.

    In the end, it’s about controlling what I can, and maximizing the things I can’t control. I made a list on paper, and one by one, we checked the things off and I started feeling better.

    Is disability an option if things get too bad?

    ~Ellen

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  • By Mr FBP

    Hello Donnielou, this is my first post. I have managed to lose one job through stress and migraine. I am currently trying to hold things together in another job, where stress is building up. Fortunately my current job is mostly home based, and I work in my bedroom – I can have a lie down if things start to get on top of me, and if no one is trying to reach me. I reduced my hours last year due to my stress levels and due to my wife having serious health issues. Six months on it’s starting to bite financially. I may have to go back full time or find a different job. My organization is having a major restructure, and that may put me in a better position but I’ll have to wait and see.

    I have worked in only one organization that had a culture of support around migraine. It was a social work dept where it was not uncommon to find managers sitting in darkened offices, creeping out into the light every so often to sign a stack of paperwork, then holding consultations in low lit rooms. The senior mangers also insisted that team managers take back excess time they had worked and take their vacation time. The team managers worked to cover each other to allow it to happen, so it meant I always had someone to go to in a crisis, which is daily in a social work team.

    Unfortunately such a supportive employer has been a one off experience for me. I remain the only breadwinner for a family of six, so I have to plug on and look at what I can change elsewhere.

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  • By 2mnyheadaches

    I work full time, because I have to support myself and my kids. Most of the time if I get a migraine at work I just keep going and act like nothing is wrong, I will take maxalt and make it till I get home then crash on the couch. It is not easy and I think it does make the headaches worse because it seems I can never get enough rest between work, kids, and keeping up the house. But I have no choice so I keep going.

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  • By Ellen Schnakenberg

    MrFPB and 2mnyheadaches and all others,

    I hope you both can manage to hang in there. Hopefully you’re both seeing good Migraine specialists so you’re able to maximize your Migraine management. I truly think that can be so life changing for many people. Here is a link if you’d like to check to see if your doctor’s name is there, or might want to find another one: https://migraine.com/blog/looking-for-a-migraine-specialist/

    ~Ellen

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  • By Chris Hicks

    Hello, I have a diagnosis of chronic migraine and work full time. I literally have some level of migraine nearly every day. I may have, if I am extremely fortunate, one full day out of a month with absolutely no migraine at all. Many of my migraines, thankfully, stay near or just above the midway mark on the intensity scale. I usually have one or two “bad” migraines, topping out on the pain scale, in a given week. I have found one abortive that is effective and that is injectable DHE (currently there is a shortage, but that is another story).
    It may sound odd to call my current situation good, but comparatively it definitely is good! Six months ago I was not only having daily migraines, but they were almost all at or near the top of the pain scale. With the help of my neurologist at the Michigan Head Pain and Neurological Institute in Ann Arbor Michigan I have achieved a better state of management.
    Throughout my long history with migraines I have managed to work full time. I work in the field of healthcare, specifically in the “business” of healthcare. I have served in a variety of roles including traveling consulting and most recently financial executive. I have had the blessing of working with individuals who are understanding. With my current employer I have had periods, this past summer for example, where my absences were significant. Despite these days away from the office I was able to meet most of my deliverables.
    I must say that not all of the ability to work full time is the willingness of the employer to be flexible and understanding. A lot of it, I think, comes from years of effort invested into techniques that allow me to experience the migraine (the pain and other unpleasant symptoms) but not to “suffer”, at least not to dwell in, or focus solely on “suffering”. I have spent decades developing a variety of meditation techniques, including what I call a kind of “working meditation”. Through frequent use of these techniques I can exist and function, to a varying extent, at work even with a significant migraine. This is not to say I can do this without the assistance and support of strategic use of abortive medications. I do rely on medications (and meditations).
    There are, of course, times when I must concede to the migraine. In these times I simply exit and retreat to the nearest safe, quiet, dark space. If I can make it home I go there. Sometimes it is closing my office door, turning off the lights and spending sometime in that space.
    Having said all this I am compelled to share that I have seriously thought about disability. There have been times, when things get bad for long stretches, where I have felt unable to continue working. I know for many here that point was reached and the decision was made to stop working. I may some day reach that point. For now, I am able to continue working and I choose to do so. I think, in my case, the fact that my work directly impacts the health of several communities is a huge positive. Serving a Federally Qualified Health Center with five clinics in Michigan that provide access to healthcare for the under served is such a great balance to what I see as the darkness of chronic migraine… for now I cannot give that up. I am blessed to be able to continue to serve.
    Finally, I write this at three in the morning. I am up, and have been, because of a migraine. My week has been up and down. I have had two really great, almost pain-free days this week! Unfortunately, between those days I have had some pretty severe migraines. Last night / this morning has been one of those severe migraines. I have chosen to save my DHE as I have only four vials left. For me this means that I turn to other abortives that are less effective. It also means that my Friday in the office is likely to start off on a rather unpleasant note. This is where I rely more heavily on meditation techniques.
    Thanks to all for allowing me to share. As always, this community is such a deep source of strength. Blessings to everyone here.

    Take Care,
    Chris

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    • By Katie M. Golden Moderator

      Chris,
      I’m really impressed with your ability to balance work and illness. It can get overwhelming at times. Having an employer who is sympathetic is such a blessing. I spent two years after my Migraines turned chronic trying to work as much as I could but often working from home or having long absences. A year ago I decided to go out on short-term disability to try a few treatments and modify some lifestyle behaviors to see if that would help. Many obstacle got in the way and short term has turned into long-term disability.

      My employer has been great through everything. Leaving work didn’t make the Migraines any better or worse. I hope to return to work at least part-time, but it’s not clear that I’m ready yet. It’s such a personal decision.

      If you decide later on that you want to pursue disability, this blog post is a great starting point for understanding the process of filing a Social Security claim. Good luck to you!!
      https://migraine.com/blog/social-security-disability-insurance-benefits-the-basics/

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  • By Mr FBP

    Thanks, Chris for your story. My migraines aren’t chronic, but seemed to be heading that way before Christmas. I saw a specialist who have some tips which I have been discussing since with my GP (I live in the UK, so Health terminology is different). I’ve been taking sumatriptan as an abortive, but it isn’t always effective, and when it does work it leaves me dizzy and spaced out for between an hour and six hours.
    I’m now taking amitryptiline as a preventer, which has cut them down a lot. I’m also now on a mild drug for anxiety – this has headaches as a side effect, and I did get some more for the first month.
    Frankly, my boss is unsympathetic. I work in the health sector too, but it’s not a particularly healthy organisation. My boss had had months out in the last year and a half, my work buddy is on long term sick and one other person has left our team due to stress. Thankfully the organisation recognises my migraines as a disabilty and will allow extra sick days before questioning my abilty to do the job.
    This is great site for sharing. I haven’t found a similar site in the UK,where there is such openness and humour relating to migraine.

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  • By Chris Hicks

    I thought it was time to post some updates again… Never sure where to put these. Since I am struggling a bit with work I thought I would start here…

    So, I am about one third through my month long Methergine “holiday”. As expected the migraines have flared up Big Time. It is clear that, although the frequency was not better, the intensity was improved with Methergine. I can clearly see this as my daily migraine has gone from around the middle of the pain scale to near the top. This is BAD.

    What is worse is that I recently took on a new role at work that means more responsibility and some stress as it puts me outside my comfort zone.

    Do you ever feel like there are two of you? There is the me that enjoys challenge, that knows I can contribute and be an integral part of my organization. There is also the me that is tired, beaten, bruised, drained and lately, flat out depressed over the long-standing chronic migraine and all the discomfort that comes with that.

    Lately I feel like I am shrinking into a hole, withdrawing, isolating… Today I had a visual of shrinking leather that is hooked around the edges… as it shrinks, the hooks pull tighter and tighter. At some point SHRED, RIP… Not a very pleasant or positive image.

    Nevertheless it kind of sums up my mental and emotional state. I find that with the migraine back up near the top of the chart at some point nearly every day my personal energy, my battery is drained sooooo quickly.

    So, the balance of work and migraine is tough right now. I go for an echocardiogram, chest X-ray and ultrasound of the abdomen soon. Once the results are read, and there are no abnormalities I can go back on the Methergine and hopefully get back into a more tolerable state.

    I go back to the Michigan Head Pain and Neurological Institute on June 4th for my follow-up with the neurologist. I also have an appointment with one of the program psychologists (I really need that this time… ugh) and there pain program physician to discuss more nerve blocks and other options.

    For now I struggle, daily with the perceived darkness that seems to surround me. I have been through these times before… the migraines flare up, stay up and drive me into the ground. I develop a nearly constant internal voice that seems to focus solely on the negative of everything. What might normally seem like a small challenge becomes something unimaginably tough to deal with.

    Wow, this sounds depressing. Sorry for the negativity.

    Tomorrow is a new day. Just tired and in one of tough spells.

    Thanks for listening.

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    • By Katie M. Golden Moderator

      Chris,
      I was on methergine for a while too. I couldn’t sleep on it. Normally I sleep all the time and on methergine I would get maybe 3 hours of sleep a day. I’m glad it’s working for you. Unfortunately, the methergine holiday is very necessary to make sure your liver is ok. It must be really hard during this transition.

      Just know that it won’t last forever. And as much as you can, reach out to family and friends even when you don’t feel like it. It’ll help to sustain you.
      Good luck and take care of yourself!
      -Katie

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  • By Ellen Schnakenberg

    Chris,

    Congratulations on doing a good job, as I assume they would never trust you with increased responsibilities if you weren’t a trustworthy and responsible worker!

    The thing to remember is that you seem to be bouncing back when the pain has lessened. It seems to me that your depression, like so many of us, is directly connected to the pain you experience. I hope your psychologist has some good ideas to help you. I am looking for someone who specializes in chronic pain issues right now myself. We all need a little help now and again!

    Thank you for sharing your feelings and experience. I too have had nearly identical thoughts and feelings when things are bad. I haven’t been active here for the last two months because things got so severe I couldn’t manage to even use my laptop in bed.

    Thankfully, I get a day or two when I can be more productive and I’ve had a couple of those back to back, and here I am again 🙂

    The weather is a huge trigger for me. Snow seemed to be the culprit this year more than anything else. Will spring mean better days for me? For you? Let’s hope so!!!! I do know that mentally I am doing better since just having two days with only moderately severe pain. It’s easier to be hopeful when I take the time to look at all the super fabulous things coming down the pipeline. There really are some great things coming soon. If we can just hold out…

    Remember the question I always ask everybody…

    “How do you eat an elephant?

    ….. One bite at a time.”

    Even if you’re just making it minute to minute, if you made it the last minute, you can get through this minute. Just take it one at a time. I hope your tests come out good. Hang in there…

    ~Ellen

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  • By BayouTigress

    Wow so many of these post describe exactly how I feel. I’m lucky that I had lots of sick and annual leave built up before my migraines started about 5 years ago. I have severely depleted my leave reserves so I work some days that I would much rather be at home and on my relief meds, Zomig and a nausea drug. I do not feel comfortable taking them at work as I get kinda loopy. At work I only take Tylenol. Thankfully my office and home are less than five miles apart. Thankfully my boss and my employees have all been super supportive. I have worked in the same organization for over 20 years and that has given me some leeway I am very thankful for.

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  • By Chris Hicks

    Thanks to everyone for the encouragement and support. I am so thankful for migraine.com and the wonderful support everyone gives.

    I am nearly through my methergine holiday and that is a very good thing. The migraines have moved to nearly the top of the pain scale just about every day now. My frequency has always been daily, but on this “holiday” my intensity has gone so high that I feel as though I am going insane.

    On the work front, this has pushed me to the edge. As I mentioned in a recent post, I have recently been promoted at work. I find that the migraines have significantly cut into my productivity and my ability to function in this new role. Just yesterday I reached out to my CEO and shared my struggle. I suggested an alternate vision for my service to the organization. I have not yet had the chance to sit down and discuss this with her, but I am hopeful that we can work on an arrangement that will allow me to continue to serve, but in a capacity that is a better fit for where I am and what I can do in the context of the chronic migraine.

    It has been hard to finally accept that the migraine is a real obstacle, a limit to what I can do and where I can go as far as my career is concerned. To this point I have been able to “push” through most things and keep trudging forward. I feel as though I have hit a brick wall. After so many years and so much constant struggle I simply do not feel as though I can continue to fight the fight. I simply want to step back a bit, into a role with the flexibility to allow me to dim the lights, work from home when needed, work in seclusion, etc.

    I am so tired of spending the best part of my day at work, in the office, only to arrive home in with a moderate to severe migraine… Ugh.

    Deep breath, another, another, and I try to remind myself that this will pass and I will hit a time when the migraines are less intense and maybe even less frequent.

    For now, I look forward to finishing my methergine holiday.

    Thanks for letting me ramble.

    Take Care,
    Chris

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  • By Katie M. Golden Moderator

    Chris,
    I hope the discussion with your boss went well. It sounds like they are willing to work with you. I was lucky enough to be in a similar situation when my Migraines became chronic. My employer was great. We reduced work hours, let me work from home and gave up some responsibilities. Even so, after 2 years of pushing through I was exhausted. I was always feeling like I had to catch up on work.

    Last year, I decided to go out on disability. Taking care of me is a full-time job. But I definitely went through periods of loneliness and doubt. Remember to take care of you. I hope your employer gives you the flexibility you need to heal.
    -Katie

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  • By amandaturner

    Wow…alot of this sounds so much like what I go through. my migraines have recently become chronic and daily. My neurologist of 4 years closed his practice, I’ve had to start over with a new neuro and he doesn’t know what to do with me, and I have daily migraines. I work as a paralegal and my job is less than understanding. i get through the day adn pretty much come home and don’t get a break. to say the least my head is screaming by the time i go to bed. However, reading how others are getting through gives me hope. thanks guys.

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  • By Monkeybrew

    Definitely a struggle to hold down a full-time job while also dealing with chronic migraine. I know for me, especially the last couple of months, this battle is HUGE!

    Currently I am waiting for a bad spell to break. In the interim, my employer, thankfully, is very understanding of where I am with the migraines. My chronic migraine is daily at this point, with many, perhaps most days, hitting near the top of the pain scale at some point. This creates a really conflict. I am able to get to projects and tasks during my better times and that is carrying me through.

    I have started a couple of new medications, preventatives, and am hoping these will help get things under better control. I am also anxiously waiting for July 10th, when I go for my first bilateral C2 nerve blocks. I met with the physician a couple of weeks ago and he thought it was worth a try even though I have no neck pain, or issues with my neck. His theory is that a series of C2 blocks could disrupt the “process”. He said that in his experience the C2 blocks can impact the migraine even if there is no evidence of neck issues. Fingers crossed!!!

    While I wait I can say, thankfully, that the rather deep, dark depression I have experienced over the last several weeks has lifted a bit. I still feel rather down with the increased migraine intensity, but the depression seems to be backing off just a bit.

    My last few days… Saturday was a good day with only a moderate migraine. Sunday was bad with a near top-of-the-scale migraine. Monday was horrible with an even worse migraine. Tuesday was great through the early evening when a migraine came on quick. Today is bad again with a migraine that kept me from making it into work.

    I know I am not the only one who gets so sick and tired of these things! Never knowing when it will strike, how intense it will be, how long it will last… It is enough to drive one completely insane!!!

    MB

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  • By Rockin mama

    So sad to read that others experience similar struggles trying to work full-time. Chris & others above are able to describe my life too. I don’t want to be disabled, but I don’t know how much longer I can work. I’m getting close to using all of my leave time after 20 years of public service. How do you determine when you finally decide to apply? So many things to consider …

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  • By Katie M. Golden Moderator

    Angreed65,
    It’s so hard to decide when it’s time to stop working and if that’s right for you and your family. I strongly suggest that before you do it, understand what your income options are after you stop working. You may have disability benefits from your job. If not, it can take a long time to get approved for Social Secirity benefits. Here’s some basic information:

    https://migraine.com/blog/disability-income-preparation-guide/

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  • By Monkeybrew

    Hello to the Group,

    I have been able to juggle full-time employment and chronic migraine. In the last couple of years that juggling act has gone from odd shaped/weighted balls to bowling balls, chainsaws and axes.

    My CEO has been extremely supportive and flexible. I had been in a position to move forward with a promotion. Just as that was going to happen the migraines flared up and became the singular focus in my life. I was able, with the support and understanding of my CEO, to work on projects as I was able and to focus on tasks from my prior role (not filled yet). I was also extended some flexibility with working remotely. Without this I could not have made it through the last few months.

    I think I reached the end of this flexibility on Tuesday of this week. I was told that my time, previous reviewed and approved by the CFO, was now to go directly to the CEO for review and approval. Shortly after arriving in the office Tuesday morning my CEO stopped by my office for a short conversation. She encouraged me to discuss short-term disability or FMLA with my physician at Michigan Head Pain and Neurological Institute. She said she did not know what else she could do. Whether on her own or after discussion/feedback with/from others in leadership… the outcome is the same. The current model of flexibility and the frequency with which I need to take advantage of the model is not sustainable.

    In order to move forward I need to get these migraines into a pattern of less intensity and hopefully less frequency. Such a change for the better would allow me to be more fully engaged at work and to be more productive. I think a significant piece is also being present onsite, as opposed to working remotely.

    After I spoke with the CEO about the idea of short-term disability or FMLA I was visited by our HR person. She went over all the necessary forms, including those I need to complete as well as those my physician(s) needs to complete.

    Honestly, my feelings were and are mixed… I have fought and battled for so long, so hard to maintain a full-time. I have, within the last few years, gotten to a place where my level of income was not too bad. The idea of disability feels like both a hit financially as well as a kind of “loss” in this fictional war between me and the migraine.

    On the flip side there is a voice in my head that sighs in relief at the idea of not having the constant pressure to work despite the migraines. On the days where the intensity is manageable I can make it through without too much immediate drain to the batteries. When the migraine is significant, but not top of the charts, I find that trying to work through it has become a nearly impossible task. Not having that battle would bring about a certain peace.

    For now, I am still bouncing around mentally and emotionally. One moment I focus on the financial hit this could mean for me and my family (and the bill collectors!). The next moment I wonder what it would be like to focus on getting well and recharging my batteries.

    Enough rambling for now. Thanks for your time and support.

    MB

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  • By Katie M. Golden Moderator

    MonkeyBrew,
    I completely understand what you are going through. We spend the majority of our waking hours at work and we want to do a good job. You’re very lucky that your company has been so good to you. Clearly they want what is best for you. But don’t look at this as being defeated. Think of it as a new opportunity to get better control of your health.

    Maybe you’ll only need to take a few months, but take all the time you need. When I went out on disability, I looked at it as my new job. I was the CEO of getting better. I used that time to try all the things that I never had the time or energy to do for my headaches. It definitely helped me feel more empowered and gave me a sense of purpose.

    You’re going to go through a lot of emotions as you transition. Feel free to keep us updated for support!

    Also, you may want to read this article about your income options as you go out on disability. https://migraine.com/blog/disability-income-preparation-guide/

    Take care!
    -Katie

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  • By Monkeybrew

    Hello to the group.

    I just updated a thread I have under surgical treatments as I just had the third bilateral C2 nerve block last week. There is some hope that we may have found a path leading to more long-lasting relief!

    I continue, however, to struggle with migraine and work. My employer either needs me present in the office able to do what I was hired and expected to do or needs me to utilize FMLA or short-term disability insurance.

    I am patient of the Michigan Head Pain and Neurological Institute in Ann Arbor, run by Dr. Saper. I have spoken with one of the psychologists on the team, by phone, about FMLA, short-term disability and the processes MHNI has in place for such matters.

    Apparently, the clinic has a team that meets monthly to discuss patients who have issues with attendance and performance at work. This team / committee can determine that a patient needs to be off of work for a short period. Usually, the psychologist tells me, the physician will write a prescription for the patient to be off of work for a week, two, a month etc. He specifically mentioned that this group does not “change the work status”. Apparently, to follow a path of short-term disability there is a separate group or committee at the clinic that must meet to discuss a patient’s case.

    My case was on the agenda for the first team’s meeting which was last week. I received a call mid-week, informing me that I need to get in for an office visit with my neurologist and psychologist before they will make any recommendations around work status. I have those visits scheduled for later this month.

    In the interim I continue to juggle the migraine and the flexibility of my employer. Although I have not come to terms completely with the idea of migraine keeping me from working, I have at least let the idea come in and begin to settle. My goal, obviously, is to get the migraine under a state of management and control that will allow me to function at work. I can definitely see that to get to that point I may need to allow myself some time where I am not fighting every day to “pretend” everything is okay, to “make it to the office” and to attempt to function under bright lights, noises and everything else the world tends to offer.

    For now, I continue to learn more about the processes and paths as I work on next steps.

    MB

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    • By Katie M. Golden Moderator

      Monkeybrew,
      Thanks for sharing with us the protocol that MHNI has for approving time off. I’m sure it seems like a lot of hoops to jump through, but I know personally that once you leave work, it is very difficult to go back. I think their approach should give you the support you need during this transition.

      Even if it’s for a month, it sounds like you could use a break. A break from the constant stress of using all your energy to go to work and then having nothing left in the tank when you get home.

      Let us know how it goes!
      -Katie

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  • By Debs

    Hi all. This is my first post on site even though been reading for months.
    I am in uk and suffers with chronic migraine for 13 yrs.

    I have lost one job due to illness and I am process of possibly loosing another. Last week my manager suspended my shifts and I am unsure when will give me more. I have a weeks treatment lined up in hospital on 6october and I am hoping it makes a difference. If not don’t think will have job much longer.
    I have applied for disability but it can take up to 6 months for a decision here in the UK.
    I currently take a huge combination of tablets and it gets me down.
    If head wasnt so sore I would feel like screaming.
    I hate sitting in this house being ill and knowing nothing I can do about it.
    For anyone that is working. Try have balance between work and recovery time. I tend to push too hard thinking if just do little bit more work I will be ok and end up ill fir longer. I dont tend to have warning signs that will be worse. I have only had 3 pain free days in last yr and the majority of my days my pain level is extremely high. That is why this treatment in October is so important to me.

    Love to all sufferers xxx
    Debbie

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    • By Katie M. Golden Moderator

      Debs.oscar,
      I think it was a great idea for you to start the disability process now, since it can take a while to get approved. I understand how frustrating and depressing it can get.

      I hope your week long treatment helps you. I just want to caution you to not depend on this treatment to cure your Migraines. There is currently no cure. The best that you can hope for is to get some relief and to learn better coping mechanisms when you have headaches. Even when you get out, triggers will still be triggers. Of course, I hope this makes a huge difference in your daily life. I just caution because I have been there in hoping I’d be cured. I now realize I am grateful for the changes treatment has helped me make.

      Please let us know how it goes!
      -Katie
      Migraine.com Moderator

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  • By Evelyn C

    I am also working full time with chronic migraines. As a matter of fact, I am battling a bad aura right now, while at work. I just started this new job this past July so I really want to make a good impression, especially since I’m back in the medical field, working for a home care & hospice group. I don’t necessarily want to hide my migraines but I’m not sure I want everyone to know yet. At least until I can ease into letting them know. I take Imitrex when I get the aura or one of my other symptoms appears and it does help tremendously but does take quite a while for the aura to go away and in the meantime I really can’t see my computer screen or any paperwork that may be in front of me so I just fake it until I can see. I really, really hate this feeling. And I’m already worried that my migraines will have a negative effect on this job also – probably why I keep getting the auras – such a vicious circle. I just keep plugging along though, trying to do my absolute best.

    Good luck to everyone else out there, hope you are having a better day then I.

    Evelyn

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  • By Anonymous

    Hello All,

    Work is causing me a tremendous amount of problems right now. While my direct manager is very understanding and kind, she can only help so far. I continue to exhaust my FMLA and am in a limbo state of weekly exhausting my FMLA to turn around and have to resubmit my FMLA Forms.

    My company does have telecommuting positions, but my current job is NOT one of them. I reached out to a HR Work Accommodations Advocate for special needs, but that seems to be leading to a dead end.
    Honestly, everyone talks about “managing” your condition, but with being in a constant state of Migraine Phase, I just don’t see how that is possible. I’ve determined a number of my triggers, Lights, Glare, Scents – All things I cannot get away from at work. So how do you “manage” things that are NOT in your control? As for other triggers, it’s hard to identify them when I’m constantly surrounded by these other triggers. Well, it could have been the bread I ate, but then again, the room is flooded with fluorescent lights so it could just be those. I DO know that caffeine & chocolate are NOT triggers, Red wines/sulfates CAN be triggers in large enough doses. Dehydration can be a trigger so I drink plenty of water/fluids every day.

    My husband & I debated the idea of me looking into disability, but I’m not sure we could afford it. Not to mention, I don’t visit the ER for my migraines. For me, it’s not the pain scale that is really high on my migraines, but the side effects that really impact my life the most. The mood changes before a headache, the fuzzy head feeling, the in ability to concentrate or find words, the intense fatigue, the photosensitivity, and the anxiety, just to name a few. Not to say the pain isn’t there or isn’t bad. Some days it’s very bad, but most of the time if it was just the pain, I could ignore it and go on with life.

    Right now, I just keep hoping I can somehow find and move to a telecommuting job. If I could work from home I think that I would then be better able to get a grasp on my condition. Next week I get my first set of Botox Injections. Fingers crossed they work because so far the medications have only worsened things and not changed my migraine levels.

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  • By Tammy Rome

    Sara,

    I am sorry migraines are giving you such a hard time right now. Trying to hold down a job with constant or near-constant pain can be overwhelming.

    To start with, I wonder how often you are taking pain medication (including triptans) and what (if any) preventives you have tried. My other question is what kind of doctor you are seeing for your migraines. From your description, it doesn’t sound like you’ve found a good treatment regimen yet. Good migraine managements includes both acute treatment (2-3 times a week max) and preventive (daily) treatment. If I were in your position, I would keep pressing my doctor for better solutions and/or a referral to a headache specialist.

    As for your triggers, do you think your employer would consider providing you a workplace free of florescent lighting and strong smells until you can get a telecommuting job? That might help by at least easing your discomfort when you must work with a migraine. That is usually a reasonable accommodation most employers can make. This might give you and your employer some ideas on how to accommodate your need to avoid triggers: https://migraine.com/blog/ada-accommodations-migraine-triggers-making-the-workplace-work-for-you/

    Please write back to let us know how it works out.

    Tammy

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  • By Anonymous

    Hello Tammy,
    A year ago I asked for a florescent-free lighting space, but we have an open floor plan here & they could NOT accommodate me. My HR rep was insistent that a “hat/visor” would solve my problems if nothing else worked. We did do a few things like move my desk, but it didn’t really help since I’m still under fluorescent lights.

    As for the “scent free” work place, I actually do work in a supposedly scent-free area. However, having a scent-free policy in a place and actually enforcing it are two very different things. People still wear perfume, but perfume isn’t my own problem. I get sick from the smell of people’s laundry detergents. For example, I can smell Gain laundry detergent & it triggers or worsens my migraines. Also, cigarette smoke, fresh & stale triggers my migraines. This isn’t just “not liking a smell.”

    I’ve had my neuro send 2 letters to my HR work accommodations people, and so far, they do not seem to be able to help me at all. They completely shut me down. I’ve honestly started to wonder if I should seek legal counsel because of the way they have treated my case. In fact, just this week I had a situation develop. Last Year (in May 2013), I specifically requested a shade over my cubicle from the florescent lights & was denied by my HR accommodation specialist & by the contact here in the building. My manager came to me & told me that a representative on another team had one and WAS able to get her approval through the same person who denied my request. When I put in my request, I was told that it was impossible because they interfered with the (non-visible) sprinkler system in our building.

    I am seeing a neurologist/migraine specialist for my headaches. To date I have tried 3 different beta blockers (Prescribe by my Primary before I saw my neuro), an SSRI, Zonegram, & Topamax. So far the only changes I’ve experienced is slightly less pain but no changes in my prodromal symptoms and other symptoms. I also take Rizatriptan as a rescue med, but it only covers my migraines 2-3 times a week. Currently I’m experience migraines at a minimum of 5 out of 7 days a week. Next week I start Botox and will hopefully come off of Topamax which has been the worse treatment to date.

    Since starting treatment the over-all pain scale of my migraines has gone down, but not the other effects of my migraines. In fact, in some cases they have worsened. So I have more cognitive problems now than before taking medications. The severe fatigue pro- and postdrome has not changed at all. The prodrome mood swings definitely worsened on the Topamax.

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  • By Tammy Rome

    Topamax can certainly worsen the fatigue, mood, and cognitive symptoms. Hopefully you and your doctor can find a workable preventive routine soon. Keep us posted on how you do with Botox. Just one more question though. Have you considered trying one of the longer-lasting triptans like Frova or Amerge? I’ve had good results using Amerge. I used to get migraines day after day (more than my insurance would allow triptans for) and then my doctor switched me. Now a single Amerge stops the attack and stays in my body long enough to keep another one from creeping up before it wears off. Another plus is that I don’t get the same amount of body aches, chest tightness, and throat tightness that I did with other triptans. Just saying…it might be worth considering.

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  • By Anonymous

    Yes, my doc & I hestitated trying Topomax until the very last because of the potential of unwanted side-effects. However, it was worth a shot I suppose.

    I will talk to him about some other triptans to see what he suggests. Maybe we can explore something different there. What I would really prefer to do is really just take some time to really focus on me. Not sure if we can get to that point, but it would so help the whole situation I think. Mabye I’ll get something worked out with my job. At this point, I’m almost sure that just the stress of dealing with my job is worseing my migraines. The stress of dealing with the FMLA and with being worried over whether I’ll exhaust it again is probably causing more problems than not.

    I’ll let you know how the botox goes. I don’t expect a cure, but if I could just get something to calm them a little bit then that would help. Just something to find a way to get one thing under control so I can find a way in. It’s kind of like being stuck on a tilt-a-wirl and needing to find a central focal point. Just something to focus on to get a bearing.

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  • By Katie M. Golden Moderator

    Sara,
    Tammy gave some great suggestions. I just wanted to provide you with 2 articles that may help you.
    Here are some important things you should know when starting Botox: https://migraine.com/blog/botox-basics/

    Also, since you mentioned going out on disability, here is an article that may help you to figure out what your income options are: https://migraine.com/blog/disability-income-preparation-guide/

    I hope your work starts to cooperate and you are able to make these Migraines more manageable!
    -Katie

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  • By Monkeybrew

    Hello again to the group. A short update…

    I continue to struggle with full-time work and migraines that have shifted to higher intensities. My frequency has always been daily, but when they are near the top of the pain scale it gets extremely difficult to function in any meaningful way.

    My employer, as I think I have previously posted, has been great about being flexible. I have had the great option to spend some days working from my home. This is coming to an end as they have voiced the need for me to be present in the office or to start using FMLA or short-disability.

    I have talked to MHNI about this. My case was discussed at the monthly meeting at the beginning of September. This, I am told, is a team meeting where decisions are made regarding writing an “order” for a patient to give to their employer for a specified period of time to be off of work. Further, I am told that going the route of short-term disability runs through a different team or committee.

    I have submitted both my employer’s FMLA and short-term disability forms to MHNI but have not heard anything back. I have called and left a couple of messages with no response. In the interim I continue to miss time at work. I must admit this is more than a bit frustrating. I suspect that they are waiting until I have had my appointment at the end of this week. It would be helpful if someone there communicated something to me so that I am not left hanging in a kind of limbo.

    My intent is to contact them, again, by phone today to see if I can get a status on where things are at with the paperwork.

    MB

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  • By jkrudolf

    I am just blown away that people are able to work full-time (or even part-time!) with chronic migraine! I have to admit that learning of this makes me wonder what is wrong with me that I cannot : ( Am I not trying hard enough? Lacking the ‘intestinal fortitude’ gene? Hhrrumph. Oh, the challenge of coping with the self-blaming language and damaging thoughts….

    I worked full-time until the migraines (and fibromyalgia/CFS/depression/ulcerative colitis) seemed to take over my life. I don’t seem to respond to the anti-nausea medications. I can push through pain (worked in dimly lit office, practiced breathing exercises to work through the pain) but the nausea/vomiting and chronic fatigue/muscle weakness are game changers for me. When I try the different kinds of anti-nausea medications they leave me groggy. Pain medication makes me groggy, too. And the anti-seizure meds affect my concentration/focus. It’s been around 10 years now so I think the emotional aspect of living with chronic illness has taken a bit of a toll. I moved to part-time at the university I worked at but ultimately, the unpredictability of the onset of migraines (they last 5-7 days and I have more migraine days that non) made it difficult to meet their needs at work. I retired 3 years ago.

    I know I’m fortunate that my husband is a tenured track professor. We have financial stability and good health care benefits through the university. That being said, I have always been fiercely independent-financially and emotionally, so learning to be okay with being financially supported by my husband has been an enormous challenge. Depression runs in our family and not being financially independent has weighed heavily on my mind and heart. As many of you know it is critical to our ability to care for ourselves to remain positive and hopeful. I find it such a delicate balancing act to ride the waves of pain, nausea, sleep disturbances, etc., while maintaining emotional health.

    I believe that having a chronic health challenges can present unique learning opportunities. Because of the challenges some of us face we need to learn to be okay with setting limits, knowing when it is beneficial to push ourselves, learning to prioritize what is and is not truly important for ourselves and our families. I don’t wish disease on anyone and would rather not have the illnesses that I have. But I try to look for the lessons and meaning in every aspect of life. For me, personally, I think one of the most important lessons is learning that it is okay to be vulnerable and that it is okay and right to ask for help. That has always been a huge issue for me. So, as painful as it is to mourn the independence that I once relied upon I recognize that what I am learning through opening up and being vulnerable is of tremendous value.

    I did finally give myself permission to apply for disability-another learning experience. The claim was denied and I am now in the appeal stage and have secured legal representation. I am learning to advocate for myself without feeling the guilt about needing to apply for disability. I still vacillate between thinking I’m just not trying hard enough to work through the symptoms and recognizing that there are layers of symptoms that just seem to overwhelm me. I wish I could be stronger like some of you that are still working full-time and somehow making it work. But I know I need to work on self-acceptance at this time. My illnesses don’t define me-but I am allowing them to help teach me to treat myself with the same love and patience that I have shown toward others.

    JKR

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  • By Katie M. Golden Moderator

    JKR,
    I think a lot of people on this thread are now where you were at 3 years ago when you decided to stop working. Don’t beat yourself up about having to stop. that was the right decision for you. Some people don’t have that luxury, maybe they are the only bread-winner and they continue to work through their disability longer than others.

    A lot of what you said sounds like me too. Migraines can take away your independence, but you have to make the best of it. And I hate asking for help, but this disease has made me more humble. I wrote about it here: https://migraine.com/blog/help-not-wanted/

    I encourage you to keep working on your disability claim. A very high percentage get denied after their first submission (including me!). Kill them with details. Good luck!
    -Katie

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    • By jkrudolf

      Hello Katie!

      Thanks so much for your kind response! It’s funny (well, maybe not) but after I wrote all that stuff about illness as a learning experience and the importance of being positive I just lost it. It’s easy to talk the talk…but applying the mindset when I’m feeling defeated is another thing altogether.

      So appreciate everyone at Migraine.com. I have found that friends and family, while supportive, have a difficult time enduring a relationship when get togethers are often cancelled because of migraine. I went from being the ‘go to’ person to feeling like a can no longer be relied upon. It hurts. But, I also think that’s where the self-examination thing comes in-i.e., why does it hurt so much. For me it comes down to loss of pride, mourning that super active and reliable person that I once was while seeking more understanding of why those things were so important to me and asking myself, “why am I so uncomfortable asking for help?” Lots of processing of emotions. So-working on myself, finding self-acceptance of the ‘new normal’-hard work.

      thank you, again. I so wish everyone comfort.

      JKR

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  • By srcnnll

    Hi,
    I am new to this site, but NOT new to migraines. I have had migraines since teen years if not earlier. I have tried SO many different treatment options for migraines and for one reason or another was not able to stay on them–either little or no benefit or the side effects. I work full time as an RN. Luckily (time/shift-wise) it is a management position that is Monday to Friday 8:30am to 5:00pm. No weekends or holidays or call ins thankfully. But being a RN, especially in management, I need to have a clear head. Of course I was started on beta blockers–even w/ normal blood pressure. That caused swelling in my hands and feet and my BP shot through the roof AND did not help w/ my pain. I have been tried on different SSRI’s and antidepressants w/ negative effect. On nortiptyline I had a psychotic episode, scary. I tried topomax on and off several times w/ different treatment plans, each time increasing the dose more and more. I had the numbness, tingling, word finding problems, forgetfulness, clumsiness among other side effects. The frequency of migraines came down only slightly so the benefits were not worth the side effects. I had to change Neuro’s because the 1st one left his practice and the next Neuro tried more holistic options (magnesium, butterbur, ginger, riboflavin, yoga, CBT, stress management) and utilizing fioricet PRN w/ little effect and no change in frequency or intensity. We tried a calcium channel blocker which made my BP higher than normal (150/90 when my normal was 122/60). We then again tried topomax w/ more and more higher doses (up to 300mg twice/day) w/ little effect and more side effects. They then added gabapentin which just made me a total mess that had constant migraine and an inability to even balance a check book. All throughout this I tend to miss 1-2 days of work every quarter. My current job, I miss 1-2 days/quarter and go to work quite frequently (3-4 days/wk) w/ migraine pain and symptoms and decreased productivity. I would call out more often but would be written up or lose my position. I miss so many personal events due to migraine. This summer alone, I missed a bridal shower, baby shower and 2 weddings as well as birthday parties/BBQs and get-togethers. Currently I am not taking any preventative meds because I just can’t even…I take excedrin migraine, naproxen, ibuprofen, fioricet and zofran. Also I take benedryl at bedtime if I know there is a change in weather to help combat migraine due to barometric pressure changes. I am happy to find a community that understands. I feel bad complaining to my husband all the time about it…it’s bad enough that he has to put up w/ my mood swings and unproductive self. Look forward to the info I can find on this page.

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  • By Anonymous

    JKR,
    Each of us deals with a similiar conditions but yet each of us experiences it so differently. For example, you mentioned that you are not only Chronic Migraines, but also fibromyalgia/CFS/depression/ulcerative colitis. Those are major issues to be dealing with. Even if you didn’t experience any of those other conditions, your experiences with migraines may be completely different from my experiences with migraines.

    It’s funny that you say that, because I often feel guilty that I need FMLA when so many people with Chronic Migraines don’t. I think “what is wrong with me that I need this”. What makes it worse is my SIL suffers from Lupus and yet works as a nurse 32 hours a week & raises 3 children. I think, why am I doing worse than her?

    When my logic kicks in I know that I cannot compare myself to her or to anyone else. All I know is what I can and what I cannot do. My SIL has pushed herself too far in the past. Last winter she had a major Lupus Flare that hit her lungs because she wouldn’t take time to slow down and take care of herself.

    As for an update on my job…I’ve actually found a new job. I am not sure how it’s going to go. Only time will tell. I do know though that the stress of knowing that I do not have to put up with the crap here anymore has already shown significant improvements in my conditions. It’s not perfect, but I have been doing much better. Also the Botox does seem to be helping. Most of my migraines the last week I can pinpoint the exact triggers which is something I haven’t always been able to do. For example, I KNOW I failed to drink enough water this weekend which led to migraine-weekend. It’s still early yet, so I’m still watching to see.

    I don’t know how things will play out with the new job. It’s very scary because I’ll be scarificing my FMLA as I will not longer be eligible for it, (at least not for year a year) but the decrease in stress may just mean I won’t need it. Also the work options and enviroment and job should be better suited to meet my needs. If it doesn’t pan out, then it just maybe that my husband & I need to consider adjusting our lifestyle to live on 1 income. (very hard to do in the state of Maryland). Luckily he just recieved a substancial raise and promotion. September was a very good month for us, and I am feeling much better and happier in general, which as you know goes a LONG way to improving the state of your Migraines.

    Fingers Crossed.

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  • By Melly62

    Hi, I’m kinda new around here and would like to get my terms straight.
    I have had a migraine since Aug. 6th. It hasn’t diminished since that time, same numb skull feeling, aura flashing around, lasers shooting out of my temple (you get the picture). Two months, 24/7, I’m on 225mg of topamax (no relief) they throw in prednisone when I can’t tolerate the pain ( waste of time). I’ve been to the ER a couple times (they do nothing). Neurologist requested MRI w/ and w/o contrast. All results are good. He calls it a neurologic migraine but I don’t think he understands that it has never gone away.
    At a loss, at my wits end, close to a nervous breakdown but my question is….is that a chronic migraine???
    Any guidance would be greatly appreciated,
    Melly

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  • By Tammy Rome

    Thanks for writing in. The gold-standard for diagnosing headache disorders is the ICHD-III (International Classification of Headache Disorders). The term “neurologic migraine” is not found anywhere in the ICHD-III. Not all neurologists are headache specialist or adequately trained to treat migraine.

    Chronic migraine is a complication of Migraine that occurs when you experience 15 or more headache days per month. For a proper diagnosis, 8 of the days must be migraine lasting at least 4 hours. It is possible that this is your diagnosis. It could also be New Daily Persistent Headache, Medication Overuse Headache, Hemicrania Continua, or a number of other possibilities. In order to get an accurate diagnosis (and effective treatment), please consider seeing a true headache specialist. You can find a listing at https://migraine.com/blog/the-mrf-directory-of-headache-and-migraine-specialists/

    I hope this answers your question.

    Tammy

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  • By Tammy Rome

    Thanks for writing in. The gold-standard for diagnosing headache disorders is the ICHD-III (International Classification of Headache Disorders). The term “neurologic migraine” is not found anywhere in the ICHD-III. Not all neurologists are headache specialist or adequately trained to treat migraine.

    Chronic migraine is a complication of Migraine that occurs when you experience 15 or more headache days per month. For a proper diagnosis, 8 of the days must be migraine lasting at least 4 hours. It is possible that this is your diagnosis. It could also be New Daily Persistent Headache, Medication Overuse Headache, Hemicrania Continua, or a number of other possibilities. In order to get an accurate diagnosis (and effective treatment), please consider seeing a true headache specialist. You can find a listing at https://migraine.com/blog/the-mrf-directory-of-headache-and-migraine-specialists/

    I hope this answers your question.

    Tammy

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  • By jkrudolf

    Just got off the phone with someone from disability services who is investigating my social security disability claim. I was denied once and am in the process of appealing the decision. I’m back in that ‘down’ mode. When I was still working I had to advocate for myself through the disability services/affirmative action office on the university campus just to fight for a reduced work schedule. I did eventually ‘win’ (although being disabled isn’t a game to be won) but that came with a feeling of constantly having to prove myself disabled to justify the reasonable accommodation. I dealt with it for about a year before finally leaving because I could not be reliable enough with more migraine days than non in addition to battling depression, fibromyalgia/CFS and ulcerative colitis.

    So. Just that feeling that I have to ‘fight’ again for disability benefits has me severely depressed. I’m afraid I will be turned down again. With the exception of my mental health provider, I do not believe that any individual doctor will support my claim. My neurologist told me he thought I was giving up when I applied for disability and my general practitioner may not be able to say that I am unable to work. The problem is that it is the combination of illnesses that has left me incapacitated and after 10 years of chronic illness I am depleted emotionally-thus, am more vulnerable to the effects of the depression.

    I keep getting that voice in my head that says I shouldn’t even bother fighting for the disability benefits. Yet I am 56 years old and I know that I cannot do the work I was able to do before. How do I keep hope when I just feel like giving up? Without support from each one of the doctors how can I be approved for benefits? I just feel pretty hopeless right now.

    JKR

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    • By Katie M. Golden Moderator

      JKR,
      I know this is frustrating and you want to give up. But fighting for disability is going to give you much needed income until your condition changes. After 2 years of being approved, you would also be eligible for Medicare benefits.

      Social Security almost always denies the first submission. They hope you’ll get discouraged and give up on the appeal process. Being persistent is so important, as is giving them more information than they could possibly ever need.

      Have you been asked yet to fill out a Function Report? I can’t remember at what stage they asked for that. It’s about an 8 page document that asks about the things you can perform. I spent an obscene amount of time on this and I think it made a difference. Mentioning things like- I can’t drive when I’m on meds, or I forget things easily now, I get angered more easily, I can’t stand for longer than an hour, my condition requires me to wear sunglasses, I vomit, I can be in bed for weeks at a time, I’m not reliable, I rely on others to help with daily chores, etc. Be extremely specific!!

      The next advice I have is for you to look into getting a lawyer or advocate to help you through the appeal process. Most of them will do it and get paid only if you are approved. I personally used Advocator Group and they were great. They will do a lot of the leg work for you.

      You have several different ailments, so notes from each doctor you see is crucial. Having at least one of these doctors confirm that dealing with all of them prohibits you from working is critical. Sometimes Social Security will request you to see one of their doctors. But if you can find one on your own (or with the help of an advocacy group) that can go a long way.

      I know this is overwhelming, but you deserve this win. Here’s an article I wrote that may help as well: https://migraine.com/blog/disability-income-preparation-guide/

      Let me know if you have other questions, since I just recently went through all of this myself.
      Stay positive!
      -Katie
      Migraine.com Moderator

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  • By Monkeybrew

    Hello to the those in the group!

    For anyone who has read any of my recent posts under other subjects and topics you know that I just came out of the MHNI inpatient program for migraines at the end of last week. This week I am home but not working as the lead physician, Dr. Saper, suggested that going right back to work would be a mistake considering all of the changes that were made (adding/subtracting medications, new nerve blocks, etc.).

    As I hit the mid-week mark I was greeted this morning with a 5 on the 1 to 5 scale. I am trying not to over-think this, or to put too much weight on what it might mean for returning back to work next week.

    I suppose the point(s) of my post under this thread is an active search for thoughts, opinions and feedback. Allow me to provide a little background and recent history. I am a 43 year old male who works in the business of healthcare (not a clinical provider, rather more on the computer/process side). I have been in this field for twenty years and with my current employer for around two.

    My migraines are a daily event. There is literally not a day that goes by with some intensity of migraine coming on at some point. Prior to the inpatient program these were almost always 4’s and 5’s. Post-inpatient program the intensity fell to 2′ for a couple of days before moving back up the pain scale.

    Along with the migraines I have noticed an increasingly intrusive cognitive symptom I am call “brain fog”. From how other describe this, what I am experiencing fits their description almost exactly.

    So, here I am, a few days from returning to work. Allegedly a new man, ready to take on the World. Yet, I find myself today fighting a severe migraine as well as the “brain fog”. How am I suppose to work like this?

    The only steps I have taken thus far are filing out the FMLA and short-term disability forms. This will help in the short term but not long term.

    I could definitely use some guidance from the group. I suspect we have a page somewhere on the site that has more detailed information. I would love to read that. Additionally, I would welcome any helpful insight from members who may have gone through something like this.

    Take Care,
    MB

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    • By Katie M. Golden Moderator

      Monkeybrew,
      I swear I’m not stalking you! And I do hope that other members will chime in with their thoughts and ideas. But since I went through something similar at the Jefferson Headache Center, I can let you know how my experience compares.

      I too had great days when I got home, but about 3 or 4 days in, the Migraine came back in full force. I panicked. I felt like a failure. I didn’t want to go back to work where everyone expected that I’d be back 100% when I knew I wasn’t completely cured. I did every thing they suggested in my take-home treatment plan for a headache of this magnitude. It took longer than I would have liked to get it under control.

      To be honest the month after I got out felt like a fog. It bounced from good days to bad days. I had a hard time adjusting to some of the meds and more changes had to happen that slowed my progress. In the end I found that overall the intensity was not as strong on a daily basis, although they occurred just as often.

      I personally can’t imagine going back to work a week after completing this intense program. At the time I went, I was already on long-term disability so I had the luxury of staying home longer.

      Of course I don’t know your situation but I’m sure you feel obligated to go back to work. The best advice I can give you is to listen to your body. If you push it too hard too soon you may reverse any progress you’ve made.

      I sincerely hope that this high intensity Migraine is a fluke. But maybe you should explore with your boss and your doctor about staying home a little longer until you feel strong enough to go back. As you contemplate this, here is an article about your income options if you need to be out of work longer than you want.
      https://migraine.com/blog/disability-income-preparation-guide/

      -Katie
      Migraine.com Moderator

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    • By Monkeybrew

      Katie,

      Hah, a migraine stalker… more like the MIGRAINE is stalking me!!!

      I have read the linked document you have in your post in the past, but I don’t think I was ready to really hear what it had to say. I will be reading it again tonight with a fresh perspective.

      I cannot thank you enough for the support and encouragement!

      MB

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  • By Monkeybrew

    I hate to keep tacking things on like this but… When thinking about the inpatient program, followed by a week out, but off from work my mind tends to noodle over some things.

    In this case, I think back to instances where I felt significant to severe Brain Fog. When I think of those times I often also recall a sense of EXTREME fatigue that accompanies the “BF”. I do not know if I can say there is always one with the other, but there definitely seems to be a connection, a relationship.

    Here is link to an article on migraine and fatigue from Migraine.com I hope some may find it useful!!

    https://migraine.com/blog/migraine-symptoms-fatigue/

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  • By slorider

    Thank you Monkey and everyone who has contributed to this forum. For 30 years I have hid my migraines from everyone at work. I remember shutting my office door and hiding under my desk. My husband is self employed and if I want insurance and enough money to raise our family, I need to work.

    I was foreced to reveal my condition a couple of years ago when I started taking topamax and I became intellectually compromised. I had to come clean to my boss. Amazingly, she was sympathetic. I now still work with migraines, but recently went home shortly after arriving because my migraine had become intense. She made me text her when I arrived home to be sure I made it safely.

    In addition to myself, my husband and family suffered all of these years because was I often bedridden for the whole weekend after working with migraines.

    I believe if there were more sites like this one and more support, I might have done things differently.

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  • By Anonymous

    I am a 29 year old, single mother of two young children that works full time in an office job. I have suffered from migraines since I was a young child. I have to work because I have no one else to fall back on and I have two children that depend on me. It has absolutely 100% affected my work.

    Last summer I was fortunate enough to take a position with the local government. My probation period was extended due to my high number of absences. In about 5 months I missed 14 days of work. It caused me severe stress worrying if I was going to lose my job which probably didn’t help anything. During my extended probationary period, I applied for and received a promotion to a new position which is more challenging and even less tolerate of time away. I’ve replaced two retirees and there is no one to do my job while I’m away. I’ve missed significant time since I started this job in July of this past summer. Nothing has been said to me yet by my new Manager – although every day I call in, I have anxiety about losing my job.

    I have been up front with my Manager about my migraines and kept her in the loop with my neurologist appointments and my treatments. I feel this is only fair with the amount of time I miss. I don’t want to feel as if she thinks I’m just taking free sick days – I’ve dealt with enough of that in my life already. So far, nothing has been said but I feel like it’s just a matter of time before I’m on that list every office has of ‘problem employees’.

    This is definitely a challenge that I have as a migraine sufferer. Some days, I wake up with a migraine and no medication can help. Other days, they come on during the day…usually in the afternoon after staring at the computer. Abortive medication has been helping most of the time in those cases but not always. Just about every day I have a headache at work, however. I have learned to work through the discomfort.

    Last week I began a new treatment – Topamax. That has presented it’s own challenges as I’m having unpleasant side effects which are making it difficult to be at work. Dizziness, vertigo, nausea, joint pain and trouble concentrating. The goal of trying Topamax is to see if I can get a handle on my daily headaches so they do not interfere with my work – kind of counter-productive if the side effects are interfering with my work.

    And so the constant battle continues. I just know that I’m a survivor and I will do what I have to do to provide for my children. An understand employer is ideal in these situations. I’m not sure if that’s what I have yet. I’ve only been here about 5 months and I’m worried I will have disciplinary action at my probation meeting in a month. That just adds to my stress and anxiety.

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  • By Katie M. Golden Moderator

    Zephalia,
    I have been in your same position except I had been with my employer for 9 years when the Migraines became chronic. The stress of not knowing if you’ll have a job tomorrow can’t help your daily headaches. I have a couple of suggestions that may help you.

    How much Topamax are you taking? If you are having unpleasant side effects, talk to your doctor about reducing the dose. If that helps then you could increase it later. Increasing or decreasing 25mg at a time can make a big difference.

    Since you have financial responsibilities, you should look into short-term and long-term disability options. If your employer does not offer either of these, you can purchase a policy on your own. Here’s an article about your options:
    https://migraine.com/blog/disability-income-preparation-guide/

    I hope this helps. Best wishes!
    -Katie
    Migraine.com Moderator

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  • By Stephanie C.

    I am currently feeling the stress from working full time with migraines. It’s so hard to comply with my company’s sick day policy. We get to have eight attendance instances TOTAL before we are subject to a disciplinary review. That means coming in late, leaving early, calling in sick. It’s causing a lot of stress in my life because some days I know I need to stay home, but I can’t because I just had a flat tire last month and was five minutes late, and I don’t need any more absences. I just got my fifth yesterday because I knew I could not drive myself to work, much less function when I got there.

    In order to get sick pay after the fourth attendance instance (yes, STILL including late arrivals/early departures), you MUST go to the doctor to get a note. So either I’m going to pay 100-some dollars to get a doctor’s excuse, or I’m going to forfeit my day’s pay.

    I’m totally just venting right now, but it’s really starting to get to me. I feel like I’m a great worker when I am well, and I wish my company would recognize that and work with me when I can’t come into the office.

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  • By Katie M. Golden Moderator

    SJC001,
    feel free to vent anytime. You should look into the Family Medical Leave Act (or FMLA).
    this law allows you to take a total of 12 weeks off work for personal medical reasons without the company being able to fire you. There’s paperwork and of course doctor’s notes are needed, but this could relievery the stress you have about absences. And the 12 weeks can be taken intermittenly over a 12 month period, it doesn’t have to be all at the same time.

    Assuming you’ve used up all your sick or vacation time, your company is not obligated to pay you when you take off, but you have the protection that you can’t be fired.

    There are a few rules and stipulations you should check before going to HR. Here’s an article that should help.
    https://migraine.com/blog/the-family-medical-leave-act-migraine-patients/

    Take care!
    Katie
    Migraine.Com Moderator

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    • By Stephanie C.

      Katie,

      Thank you! I am definitely going to discuss this with my boss. I haven’t really known how to relate to him on this matter because he has never had a migraine, so he thinks it is a matter of me “toughening up.” It’s been incredibly frustrating.

      Thank you again!
      Stephanie

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