Hello migraine community,
I guess I'm appealing to those who have been unable to work with migraine disease. I completely dread the "So what do you do?" questions, and also the (by those who haven't seen me in years) "How's work at the college?" questions. So much of our culture, and us as people, are "what we do". So what happens when we can't do? The old, "I'm not working now", "I'm unable to work now", "I'm a trophy wife" ...just kidding here :) don't work, and invite more questions--I guess I'm just embarassed by. I don't know why I am so uncomfortable admitting to this illness, this frailty (maybe I see it as a failing? aren't we supposed to overcome illness and get better? It seems to be expected, or was in my family--you kept going on even if you were sick, no matter what).
The fact is, the last few years have been a black hole for me. Haven't worked. Haven't done anything new. Haven't had much fun at all (except what I can tweak out of those all-to-brief, less-painful, somewhat-functioning, brief moments in time that I cannot forsee, or predict, but just hope for). I have been in pain, gone to a myriad of appointments involving all kinds of tests, traditional and alternative therapy, mostly extremely painful and non-helpful, and, at this point in time, I am so limited in what I can do. I stay home, mostly (carefully managing meds to avoid rebound), dreading the days I have to stay off meds (means unbearable pain and even more limitation). When I do get out, it's usually to play catch-up--groceries, drug store, various errands, etc. An occasional lunch or dinner out is such a treat.
I have the disease no one can see. The potential "silent killer"--it does produce changes in the brain over time, leading to goodness knows what eventually. I mean especially silent because unless we complain out loud, everyone thinks we're fine and dandy. And who wants to be known as a complainer? I guess when people ask questions about what I do, I especially don't want to sound like a whiner (remember the characters from Saturday Night Live?) I know the constant pain has interferred with how quickly and efficiently I can think things through, I joke about having senior moments (I'm 48), but my brain seems to be working on overload a lot (in dealing with all this pain and stress) and something has to go...
I've been out of work as a college professor since 2005 due to a 2004 car accident (officially given a leave for one year to recuperate, then couldn't go back to work at that time so I was let go). Before the car accident, I had manageable migraines, a few a month. My meds helped, and I lived a "normal" life: was able to participate in my family life, activities I enjoyed, work I enjoyed and was committed to, exercise, volunteer work, etc. Then after the car accident, a neck injury sent my mangeable migraines into overdrive, then overkill. The neck pain is constant, along with neurological complications.



*&$@#&!!!!!
Thank you for the reply,
Hello there,
First off I would like to say that while reading your post I found myself almost in tears because I have never met anyone who I can relate to when it comes to the migraine pain and all of the wonderful things that come along with being a migraine sufferer. People do not realize that it takes it's toll on memory, thought processes and wears down the psychological state and physical state of the sufferer. I just turned 22 years old a month ago and have been suffering with migraines since I was 12. Usually hormonal..predictable and managable. That was, until I had my daughter 2 and a half years ago. I did not suffer from one migraine the whole time I was pregnant. (Doctors often joke that I should just keep getting pregnant to avoid the agony..which isnt an option as a single mom!) Last year I began getting them more often than once a month, usually when I got my period and also when I ovulated. I also began to get "silent migraine's", which would make me sick to my stomach, have loss of memory, an inability to talk straight or even think of the right words. Pretty much the same thing as when I get a full blown migraine. Actually, right now I have something of the sort, which is why I came upon this site. I am always researching. Oh, I am also a pre-med student and an emergency medical technician, so I have learned a lot about migraines, risk of stroke, etc.. from schooling.
Unfortunately I can not work on the ambulance most of the time because I get migraines from the many triggers associated with being part of a fire department. ( lights, sirens etc..) I recently went out at night with a friend of mine for the first time since before my daughter was born. I have stopped living life because every time I do something out of the ordinary, I end up with a migraine. That's not to mention the fact that I am sick from when I ovulate until the last day of my period, sometimes longer. Usually I have the silent migraines and have to take zofran for the nausea and just deal.
I've experienced driving in the car with my daughter and loosing my vision due to a "migraine" or maybe a mini stroke..doctors can't figure it out. However, after I lost my vision, I did not get a migraine like with a "normal aura". It's confusing, and frustrating.
I know how you feel.
Life has just been put on hold, every month, for 3 weeks. I try something new every month. This month it was Aleve and Zofran. I must say that taking Aleve every 12 hours reduced the migraines more than anything else I've done. (I recommend zofran for anyone who suffers from the chronic nausea associated with migraines) This leads me to believe that my loss of vision, loss of hearing on occasion and most migraines are due to inflamation due to hormonal changes.
Either way, I can feel your pain, literally. It is hard. It is especially hard to tell people what you suffer from without sounding like your complaining. I have one friend. She is the only person that I have met that has total understanding without ever having felt a migraine or chronic nausea. Most people around my age do not understand nor want to hear "excuses" as to why I never go out. That once in a while going out on a friday night is definately a treat!
My daughter is getting back from her walk with my father. I would love to keep in touch.
Stay Strong...Stay Happy.
Kayla
Hi Kayla!
So nice of you to take the time to respond. Wow, you have a lot on your plate--and especially with a little one. I know how difficult it must be for you. I have also had migraines since late childhood/early teens (or maybe I just don't remember having them sooner--my mother swears I had them since I was a baby), though it seems like its been forever. I was also a young single parent once, going to college part-time, working part-time, who also had to cope with migraines and childcare. Thank goodness you have family to help with your little girl, they must seem heaven sent. I remember my grandparents helped me out often when my son was little.
Know that this time in your life, with a young child, school, illness, etc, won't last forever. You will persevere. When you have a little one, you do it for them, even when you don't have the willpower or the energy to do for yourself.
But being down three out of four weeks in the month takes its toll. How unfair! The least migraine pain can do is cooperate and give you a break once in a while :) Even during the week you are well, you must be drained from being sick for three weeks, and dreading knowing what is coming for the next three weeks. Ouch. It's amazing that you've been able to accomplish as much as you have!
So I'm not the only one with memory/thinking issues related to chronic pain? Sometimes it seems I'm in "stupid" mode, not clear about things I used to be/should still be sharp about. When I'm in the throes of coming down with/having/and getting over a migraine I am on autopilot, and not good for much else. It must take quite a bit of extra effort on your part to be able to complete your studies. I would recommend you speak to your professors individually about what you are dealing with (both family-wise and health-wise) to see what accommodations could be made for you in the classroom. I know, as a college professor, I always wanted my students to help me help them succeed, and knowing that they had especially difficult circumstances ahead of time really made a huge difference. Please let them know.
I'm nearing my limit on computer-glare time (am looking into getting a screen to filter this) and would love to hear about your journey as you work toward your goals in the midst of migraine disease. My heart goes out to you and I am rooting for you!
Take care.