How migraine can dominate my every move

On Friday night, Jim and I decided to take it easy and not go anywhere near downtown. (UGA’s homecoming game was the next day, which guaranteed that there’d be hundreds of raucous folks whose energy levels were not exactly in tune with ours.) We went to a Vietnamese restaurant and had some pho, which we hadn’t eaten in quite awhile. (This hot soup isn’t the best summertime treat, as its temperature and spiciness can certainly drive up your temperature!)

Three bites into the soup, I said to Jim, “Hey, know what I just remembered?
“No, what?”
“Every time we eat here we’re hungry again in, like, an hour.”

Having a delicious bowl of pho is certainly a treat, but a handful of shrimp, a cluster of noodles, some veggies, and a hearty portion of broth don’t combine to make a meal that sustains you for the rest of the evening.

Within a couple of hours, I was having some salt and vinegar chips with a side of Imitrex. Somewhere between our lovely outdoor dinner and getting home after a stop at our local video store, a migraine had set in.

I’ve mentioned before that I’m getting better at knowing my triggers and reading my body’s signals, but this is not always the case. I don’t know why this migraine attack hit me at this particular time. Was there MSG in the soup, an amount that somehow hadn’t bothered me before but was affecting me now? Was the cheap-tasting white wine to blame?

Years ago, I wasn’t very concerned with my triggers (not having heard the word in the migraine context and not having even been diagnosed with migraine disease until 8 years into my illness didn’t help increase my curiosity). But now that I’m able to trace the roots of most of my episodes, it’s intensely frustrating to not know at all where a particular attack came from. My fallback reasoning leads me to conclude that stress is to blame (either an overdose of it or its sudden lifting, as when a big project is finally over and done with). It’s scary to not know where this came from.

Two days later, I’m still struggling with the migraine attack but am wary of taking any more medication. You see, this Wednesday I have a really huge bookstore-related event I’m helping to organize, and I don’t want to have a migraine then. If I use up my triptan doses for the week, I will be stuck between a rock and a hard place if an attack comes to the surface on Wednesday. My choices will be: a) take the triptan anyway despite all I know about the dangers of MOH (medication overuse headache); b) take a rescue med such as Lortab and end up being foggy-brained and obviously drugged while trying to make a good impression and organize a lot of people; or, c) take nothing and feel like crap.

Part of me is scolding myself for not taking my medication as we speak, but an even larger part of me is terribly scared that the migraine will keep coming back and, by Wednesday, I will not be at a point where I can take more prescription meds. I’m trying to remain relatively low-stress about this conundrum, but of course the nervousness doesn’t help the stress level (and higher stress levels make it more likely that a migraine attack will come back).

Many of my non-migraineur friends do their best to understand where I’m coming from with this disease, but it’s nearly impossible to explain to them how every little moment has the chance of being overshadowed by a migraine episode. I’ve talked about this problem on my blog before, I know, but I’ve been thinking of it again lately. Oftentimes I don’t even want friends to know how big a part migraine plays in my life, ’cause I don’t want them to perceive me as handicapped or incapable of being so-called “normal.” This problem has been especially prevalent since I decided to launch my own business. On the one hand, I want to be honest with people and let them know that one reason I’m hiring more staff than a normal startup would is because I have to make sure I don’t overwork myself, that I have to make sure there’s a backup person if I am home ill. But if I tell them that, will they doubt my ability to succeed? Will they whisper to each other that this bookstore is a bad idea?

And why am I so hung up on what others think of me?

Perfectionism + being overly concerned with what others think of me + chronic illness do not go well together.

How have you guys coped with any of the issues I’ve brought up here? I’d love some words of wisdom (or at least some words of commiseration).

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

Comments

View Comments (8)
  • Faith Hunter Welborn
    7 years ago

    I totally understand where you are coming from. At least your not alone. If you find an answer -share please! Thanks!

  • Kristal Borges
    8 years ago

    sometimes need more help on being able to control this disease.

  • Kristal Borges
    8 years ago

    altough this posting may be old, I just started searching about it, I suffer from migraines very very often where my friends and family think that its just an excuse to get me out of something when really its not…days ive cried and cried becuz the pain was so bad and the ONLY medication that works for me is the excedrine migraine. The trick to using it though is I have to pop a couple of them right when I feel a migraine coming on…if I catch it to late it wont work and I will get extremely sick, sick to the point I cannot walk, open my eyes, I begin to vomit and the trobbing pain can stay for longest ive had it for was a week….so I to.

  • Amrita Bhowmick, MPH moderator
    8 years ago

    Julie, tucker, and mygraine girl – We’re so happy to hear from you! If you haven’t already, would you like to share your personal stories in the Migraine.com Patient Stories Forum?

    http://migraine.com/groups/patient-stories/

    If so, you will be entered into the drawing to win a free iPad. You can use a lot of what you have already shared on this page and I’m sure there are a lot of other patients out there that can relate to your stories! Take care -Amrita

  • mygrainegirl
    8 years ago

    I have just learned of this site, this amazing site, and have just finished reading your blogs here…Boy, can I relate. I have between 5 and 7 migraines per week. Because of the fear of triptans causing stroke, when over- used, I can only take them two days in a row. So that gets you thinking, well, there’s seven days in a week, and my mom’s birthday party is coming up this Sunday, and if I am going to have a migraine today and tomorrow, then I can’t take meds today… it’s lunacy to live like we do. My neuro has me on preventative meds: Topomax 150mg in the AM and 100mg at PM, Namenda 10 mg AM and PM, Volataren 100 mg in AM and 50 mg in PM and Amrix 30 mg in AM and 15mg in PM (Amrix is aka long-lasting flexeril). I’ve been diagnosed with degenerative disc disease and have had my C5-6 fused in Aug of 09, and that didn’t stop the migraines, like they thought it would. So now, I’ve been diagnosed with cervogenic migraines, tension headaches that turn into migraines, sometimes I get migraines with aura (just to keep it interesting, right?).
    Every 3-4 months I get facet joint injections and rhizotomies in my neck, as well as injections into my occiputs, hell hath no fury like my freaking occiputs, let me tell you! I see my neuro once a month, my chiropractor twice per week, my pain doctor once per month, my physical therapist twice per week, and a shrink twice per month…I am seeing doctors like crazy and it’s making me crazy, all because of these rotten, fetid migraines that won’t leave me be! I am so beyond frustrated. My pain doctor tells me I should be taking more nucynta (a “sister” of percocet) for pain, but I don’t want to take pain pills around the clock, but that’s how often I have pain. So I grin and bear it. Now, I am crumbling a bit and taking one every other day. Today I didn’t have a migraine – a whopper headache- but I didn’t want to medicate at all because of MOH. Gosh, this is a lot to consider, while trying to live a life and be a good wife and friend, you know? My migraines get so bad that once per week I find myself in the ER getting a cocktail of zofran, benedryl, torodal and morphine just to break a 3 day long migraine that none of my home meds could touch. My life is a migraine nightmare. I’ve gone for 2nd and 3rd opinions from other neuro’s and they both said that my neuro is doing a GREAT job. Whatthe? If this is as good as it gets, I am soooooo screwed. I am trying another doctor that is 90 mins away from me that is going to do a botox eval on me next and will consider putting me in the hospital to break this continual migraine called me life. Something’s got to give. Anyway, I just thought I throw this out into the great cyberspace migraine blog and let you know that I totally get where you are coming from and from where I am standing, you don’t have it that bad…maybe that will make you feel a little better. Peace out.
    Mygrainegirl

  • tucker
    8 years ago

    I totally get where you are coming from. Although I’ve had a decent past 2 months for some reason (only 3 migraines requiring a triptan), believe me, I am always on the edge that my stars will cross back to evil zone again and life will become the daily ‘what if’… Before I had adequate meds to treat my “headaches”, I was downing advil and excedrin just to stay above water, and spending days at a time doing all the same things I did for morning sickness (and taking meclizine since I wasn’t pregnant but I figured if it cured that nausea I got on a boat one time….) on the really bad days. At work, I was doing whatever I could to stay in the darkest part of the bright warehouse type buiding I worked in, away from people and where I could lean my head on something to do my work. Needless to say, I didn’t really have a good doctor at that time, nor was I educated about what my “headaches” were.

    Fast forward a short 5 years, (my how slow the days were at the time but how long ago it seems), I’m on my 3rd doc (a new well educated PCP, 2nd neuro) and *I’ve* been educated tons by PCP and my own research. Now I know I probably had MOH and migraines. (Ironically, I’ve had diagnosis of cluster, migraine, cervicogenic, chronic daily, and who knows what else) Yet despite cutting WAY back on the daily use of meds, I STILL have almost daily neck pain and headaches hang at a 3 to 4 out of 10. Honestly, hard to ignore when my eyes hurt to focus and my neck hurts to hold my head up and I feel like that achy flu from the shoulders up. What do you do? Every day, I wake up grouchy (so not a morning person!!) and tell the kids I have a headache so don’t cross me (They are 11 yr olds starting to bud hormones). Usually in a couple hours it does calm down a bit and may go away after I walk the dogs and take a hot shower. Otherwise, like you, I make that decision – what’s next on the plate – work, can I go back to sleep w/my ice/heat, etc, other plans for the day….

    At least now I have a good neuro who’s not wasting any time with old stuff – he moved right to new stuff – PT for my neck and even maybe BOTOX. Next visit, we address my preventive (he added 3 supplements and wants to give them time to work). I do have to travel a couple hours to see him, b/c despite living in a large metropolitan area, there just isn’t good headache care (a couple good docs at a teaching hospital but my PCP couldn’t get me in there – guess I wasn’t “sick” enough).

    I will say you are right up there with the brave! Opening your own business is tough stuff. So you definitely have a lot on your plate. LOL, and a young thing with a social life! I work scheduled PT and as needed to cover for others’ days off. I feel obligated to always be there, feeling like a dog or not (and I’ve had to sit in the bathroom and cry myself a pitty party to get ahold of myself). So make sure you have a nice cot in the back room somewhere that you can lay down with an ice pack and eyemask for a few minutes. Maybe that will be all you need to stave off a full-blown attack?

    Sometimes I just have trouble knowing what to use when. The first neuro told me to treat all headaches w/imitrex. Uhmmm, but if I get one every day and it doesn’t get above a 4, it’s not worth treating. Some migraines come on slow, some hit me like a mack truck (ok, so those are obvious – and ironically, those are the ones that imitrex usually doesn’t work for anyways. I can take 2 and still have to sleep them off) The slow ones that build thruout the day or start in the morning and by afternoon are awful, then the imitrex will usually work in 30 minutes. Weird.

    I also struggle with triggers. Really, after keeping a diary for 3 years, haven’t found anything specific. I’ve never done a food elimination. Neither neuro seems to think I need to though both asked if I had ever figured out anything special and gave me lists of common foods. And since we can’t change weather or hormones (yes triggers) then I’m stuck there.

    So maybe if you are still having lots, the preventative needs to be tweaked? Then we just need to pray to the saint/goddess of “no head pain”, LOL, I’m not up on my saints and goddesses of that specifity – but if you know, please share!!!

  • The Migraine Girl moderator author
    8 years ago

    Julie,

    Thanks for the comment. I’m happy this post resonated with you (though it’s not at all happy that we have to deal with this issue). I’m always relieved to find I’m not alone in my migraine struggles–I haven’t talked to many others who have to prioritize their medication days like we do.
    I hope you’re well, and thanks again for reaching out!

    -Janet

  • Julie
    8 years ago

    Wow. Believe it or not, in all the time that I have been reading migraine forums and blogs, this is the first time I have seen someone write about the same experience I go through with having to prioritize my medication days. As hard as it is for my non-migraine suffering friends to understand the pain of migraines, it’s even harder for them to understand why I can take meds on some days and some days I can’t. I literally schedule my life based on events that are deemed “medication worthy.” It’s terribly frustrating to just suffer on the days that don’t make the cut, knowing that there is medication in the cabinet (and my purse, and my car, and my bedside drawer, lol) that might relieve some of the pain. It’s also frustrating for my family, because they don’t always understand why some things are deemed medication worthy and others aren’t. And then as you mentioned there are the migraines that come back and you have to take more meds on that day than you wanted to…. Ugh. I can say at least that this method of prioritizing medication days has allowed me to enjoy life and the events that seem to make it worth living more than I used to. I feel like I have been able to accomplish more and have gained more of a sense of purpose since I know there are days that there is a 90% chance (I’m making that number up, but you know what I mean) that I will be able to show up somewhere I need to be and I can allow people to depend on me more that I once could. Back when I used to take my meds without any sort of strategy, I guess you could say, I didn’t really have that sort of consistency to my life. If only I could take them more than a few days each week!

    Sorry I don’t have any words of wisdom. I can commiserate though, and although I hate to hear of another who suffers, it is comforting to know that someone else struggles with the same issues I do and looks at meds the same way I do.

    Julie

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