About six months ago my headaches had been getting worse very quickly. Not responding to medication nothing would help. I got nervous and finally went to my primary care dr when I experienced severe vertigo. After 3 months of many visits crying in pain i was finally referred to my Neurologist who diagnosed me with Chronic Migraines.
I finally had answers to my many symptoms and was put on Topomax. Throughout all of this i was missing a lot of work unable to get to work or having to lie down in the break room because my vertigo got so bad. I was terrified of loosing my job so my primary care had me fill out FMLA papers. I was approved for intermittent FMLA and I was excited to not worry about my absences.
Boy was I wrong my migraines continued to get worse. I work in a sales goal environment and have gone from a top performer who loved my job. To falling so for behind I have no hope to catch up. FMLA protects my absences not my performance. I used to love my job but I feel sick just thinking about work and I know I’m going to loose my job if I don’t change something. I have spoken to my manager about options but got nowhere. I have been taken off of Topomax because it did not help at all. I stopped all over the counter meds they are no help. Imitrex is no longer any help when the migraine starts. All I think about is quitting my job because I can’t take the stress and pressure or stepping down to part time. But I don’t want to loose half of my household income. My husband has been supportive, but I know he doesn’t truly understand how bad I feel.
I just want my migraines to be under control, I have a lumbar puncture scheduled soon. I’m getting pressure at work about my absences and have been told I will be having a “conversation” about it on my next scheduled day.
Daily chronic migraines are unbearable.
I’m sorry to see you are going through such a difficult time. Working full time and having chronic migraine is near impossible for some people. But that doesn’t mean it will be forever; hopefully you won’t’ have chronic migraine forever. Chronic migraine or any chronic pain is exhausting, frustrating and downright awful. This is something I understand. Now let me see what we can do to help you out, OK?
First, you mentioned you see a neurologist, who may be a fine doctor. But is he board certified in headache medicine? A migraine specialist is THE expert who treats migraine and headache patients all day, every day and IS board certified in headache medicine. This can make a real difference as they take continuing education classes and have committed themselves to treating people like us! Let me share some information with you on what’s so different; https://migraine.com/blog/how-are-migraine-specialists-different/ and if you want to look for one you can do so in this link; https://migraine.com/blog/looking-for-a-migraine-specialist/.
How are you with trigger identification and management? Do you happen to know what any of your triggers are because it plays a key role in our migraines. It seems that triggers can be found everywhere! Some triggers include, but certainly are not limited to; dehydration, skipping meals, certain foods and smells, fluctuating hormones, changes in the barometric pressure and many more. Here is information in triggers; https://migraine.com/blog/migraine-management-essential-trigger-management/.
One of the best way to find out our triggers is by keeping a migraine journal. Doing so will help us determine any patterns our migraines may have, triggers and medications that work or don’t. There are many apps out there that can be helpful, and Migraine.com has one called The Migraine Meter you can find here; https://migraine.com/migraine-meter/.
I hope this is helpful, please let me know what you think.
I have been in your shoes, and can understand how you are feeling. The stress of worrying about your job can make your migraines worse if stress is a trigger. It is for me. Luckily, for me, I was able to change my hours to part time 2 years ago. It’s not always easy to make these decisions, but the stress of not working as much has helped some. We have definitely had to make alterations and sacrifices to our budget.
I have a very supportive boss and husband, which makes all the difference in the world. Although, I’m sure they both get frustrated, as do I. My husband works out of town and is gone 20 days of the month and I still have an 11 year old son to take care of; I could not do this and work full time too. My next step may be to quit altogether as well. It is getting more difficult to manage everything on my own.
I have been taking Topomax, which has been helping up until the last month. Imitrex stopped working for me years ago so my doctor put me on Maxalt, which works. Once, while feeling desperate, I tried Bonine (motion sickness pill) for my vertigo/nausea, and found it took some of the edge off. You may want to talk to your doctor about these if you haven’t tried them yet.
It is very difficult for others to understand what you are going through and the pain you feel, so you need to take any support and/or help you get when you can.
Good luck in finding your answers!
Thank you for the response. I learned today when speaking to my neurologist that he is in fact NOT a migraine specialist. After a discussion with my manager I was given an ultimatum, go on a leave or you will end up getting fired for not performing. I discussed this with the neurologist his response was ” migraines are not a reason to take a leave that’s what intermittent FMLA is for”. After trying to get him to understand that at my job migraines are an acceptable reason with a dr to explain in detail the effects. So instead of listening to my concerns, he told me I was depressed prescribed 3new medications and sent me on my way with a smile saying ” I hope you don’t get fired before I see you in 4 weeks”. YES he actually said that. Lets just say I’m really not sure if I should even speak to him again. I will be calling my primary care dr tomorrow and discussing how they can help me.
As far as triggers go I believe stress and hormones. I have not identified any others so far. I know my stress form work is not good. Im not used to not having control, I exceed in almost everything I do. Willpower alone is not enough anymore. I have recently started keeping a migraine journal for my benefit, none of my dr’s have even suggested it. As for now I’m going to look in to starting over with a new dr. I will check the links you provided to see if I can fine some one specialized in migraines in my area. Hopefully my primary care dr will be helpful in saving my job.
It’s really nice to know I’m not alone and there are people who understand. Because my experience with migraines is all fairly new to me I’m glad to hear of others who experience similar experiences. My manager has had migraines in the past but not very many over the years. So she has been as supportive as she can be, but I know she can’t relate to the severity I’m experiencing as much as she tries.
I am normally a very private person, I would hide my weaknesses at work. Not share personal information with most coworkers. There is no way for me to keep this a personal matter. I have gotten comments that they can tell when I’m not feeling well because I look “drunk” or my attire is very plain. Again this adds more stress. The last thing I need is to add worrying about how I look, on top of my declining performance. Every few days I get comments like “you should have an MRI” or “just drink a coffee or take excedrin, that stope all headaches”. I’m normally very patient but I’m not sure how many times I can politely answer the same questions from the same people over and over.
My goal is to take time off if it is possible. To focus on getting things under control even if its just having better mental health and to find a preventive that will help.
Thank you for letting me vent my frustration, and for understanding.
I am SO sorry to hear about your appointment but it is clear – that doctor needs to go! He clearly is not very educated on migraines and has no idea how debilitating they can be. Three new medications – how will you know which ones work? Hopefully you can get a referral from you PC (if needed) and see a ‘true’ migraine specialist.
Great job on starting a migraine journal! Any new migraine specialist will ask you to keep one, so you will be ahead of the game. Here is information on how stress may play a role with migraines – willpower has nothing to do with migraines although it would be great if we could will them away! https://migraine.com/blog/your-worst-migraine-triggers-stress-really/.
Is leave something you can do? It may be the best temporary solution instead of being laid off.
I agree with Nancy, that dr. has got to go! I live in a remote rural area and don’t have access to a specialist. The nearest one is 5 hours away and traveling gives me a migraine, so I don’t even want to go through it. I do lots and lots of research online and take that to my family doctor and we discuss it all and try different things. It’s frustrating sometimes, but I believe we need to inform ourselves as much as we can.
It is not fun having to deal with people who just don’t understand. I also went through a difference in my appearance at work. When you are suffering with a migraine it takes everything you have just to get yourself to work, let alone caring about looking sharp. I just got to a point where I half listen to them and nod politely.
I don’t like to complain or tell people that I’m having a migraine attack, but sometimes you just have to. If I have a migraine that I can function through, I am at the very least, “dumb as a post”! I’d rather let my coworkers know I’m not feeling well than have them think I’m being particularly stupid that day.
It has taken me a while to accept that I can’t do it all by myself and I can’t do everything anymore. It’s very frustrating after doing it all for so many years. My hope is that they will someday find a cure for migraines!
I hope you will be able to take some time off to get things under control and to find what works for you. Vent all you want, I totally understand!!
It’s hard to be in your shoes. Let me see if I’ve got you right…
1) Passionate about your work, dedicated, and willing to prove it
2) Finances are tied to your income, including the mortgage
3) Active in your community, church or other organization
4) Worked your entire life
5) Don’t understand the concept of “not being able to…”
Ok, so maybe that’s not an outline of you, that’s me. I too struggled with your situation. I had been hit by “a migraine” in a meeting. I remember telling him that on a Wednesday, I apologized that i was unable to focus as I had a migraine. That day changed my life. Within the week i was hospitalized, dealing with if i’d believed it to be just a migraine, I wouldn’t have spent a week puking still at the hospital. For a year, I sought help, days of vertigo, slurred speech, agitation, medicine changes, changes, changes… nothing controlling these things. Lost a job that I’d busted my behind for… FMLA couldn’t protect me. They found a way. The next job, i took 1/2 the pay, 1/3 the stress, 1/2 the performance, 1/4th the effort. All I had to do was show up, type, go home. I could do that. Not a problem in my mind.
The headaches got worse. I miss holidays, whole weeks at a time… some therapies are releaving the nausea and vomiting, but don’t stop the “stop life” of migraine, hangover, healing, exhaustion, fatigue. Then they got complicated. On my good days I run circles around my peers. On the rest of the days – I can’t even comprehend 1/4th of what I was doing. Which is not me at all… Finally… I needed time, as a new job FMLA didn’t apply, and HR was no longer tolerant of my absences… it was me or the job. my lifestyle, home, kids activities… or me. I was struggling so hard to work my deadlines, take care of my ongoing dr care, intermitten leave due to migraine, daily migraines exacerbated by stress…. it had to stop.
It’s over now. I’m hoping this change, while financially less stable, and the mental acceptance of this is migraine, this is not a cure, this is now a disability… but i’m not disabled. Neither are you.
Yes, I’ve had the dr’s that say – you’re not disabled ride the public bus. Such dr’s office treating me for an additional disease that mandates no driving for 6 months since the last episode. I’ve had dr’s tell me – I don’t treat headaches and what you have is a migraine. I’ve had offices tell me they only treat migraine with botox… not to offer any other meds. Once an ER couldn’t read my MRI correctly… they nearly told me I had some other BS disease… I’ve had dr’s question how I work, but won’t write me out of work… I’ve had dr’s tell me “this may be the best it’s going to get for me”…. All whilst trying to work. Once you’ve exhausted your primary options… you need to sit down and decide is your health and being there for your family more important than your financial contribution. You need a dr who listens to you as the patient, and you need a chance to “recover” without the stress of loosing your job. Trust me. When the cold dark reality hit that I’m missing so much more than just work…. there is more to life than work and having nice things. And you’re in for some deep soul searching to decide what is important in your family’s life. Hopefully, you’ll be able to find that balance, get back to normal, or find the solution that give you better options… but the road is long, and as a working mom, it’s even longer than people want to understand. It’s also scary. I was more afraid… to trigger, to loose, to do… to cause… to miss… once you’ve gone down your best options, ruled out all the major details… then you may have to have a sit down with yourself.
Thank you Siotha Vest! Your post hit very close to home, I am starting to focus on what is truly important, my health and my family.
I have recently with the help of my PC DR, started a short term disability claim at work. I am now able to take the time to find the correct prescription to prevent my migraines. I will be seeing a NEW neurologist, with no migraine specialist available to me I will take a chance with this new DR. If things with him don’t work out then I will look in to the closest specialist who would be a few hours away. Hopefully taking the time off of work will help to reduce the stress and let me focus on my self.
I truly love my job and look forward to being in better health as soon as possible so I can return to work. If thing don’t go well and my claim is denied then I will be putting my health first.