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Living with Migraine

Long term outlook?

  • By GardensatNight

    This may seem like a random question. But what sort of pattern do migraines follow for most people? Do people get them and then get worse and worse? Or do you hit a certain age and improve (a friend told me hers disappeared at menopause.) Or is it something else?

    One of the things I’ve struggled with recently as I’ve tried to adapt to this “new normal” that includes twenty pills and vitamis a day, eliminating what feels like 80% of the food I used to eat, no longer going to restaurants or movies and not being able to watch TV no matter what glasses I try because the light sensitivity is so bad, is that i’m terrified, paralyzed sometimes, that as quickly as I went from 1-2 episodic migraines per month that started in my 30’s to five years later suddenly, seemingly randomly being struck down by 4-5 awful ones per week. Finally, months and two neurologists later, I’m having one per week, which can be knocked out by medication, so long as I sit in my house and don’t turn on any of the lights. I’m a teacher (so think fluorescent lights) and will go back to work soon and am terrified more light exposure will make me sick again, or that my planned measures of turning off the fluorescents and using natural window lighting and lamps will still make me sick somehow… and I guess that’s really the scariest thing, not being able to look at this and have any way to understand what caused me to get so randomly sick all of a sudden and not knowing if, even after adjusting to everything, should I expect that a year from now or 5 years I’m probably going to have another nosedive? It’s not particularly fun to think of never watching TV again, but I know some people have it a lot worse too. But then with how quickly this struck, I felt blindsided–and before I was so healthy.

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  • By Nancy Harris Bonk Moderator

    Hi UsedtoGarden,

    I wish there was a definitive answer that would indicate what to expect from our migraine patterns. However the reality is that we just don’t know this as everyone experiences migraine differently. To complicate things migraine patterns can change over time, as you know, which makes things more difficult for us.

    I can tell you that for some women migraine does improve after menopause, but for others that’s just not true. In fact I can provide you with numbers on migraine and menopause. Recent studies show that when women go through natural menopause 67% find their migraines get better, 9% find their migraines get worse, and 24% of women find their Migraines don’t change at all. Now on the other hand the opposite holds true for women who have surgical menopause; 33% find their migraines get better, 67% report their migraines get worse but the number of women is insignificant (study wise) whose migraines don’t change at all.

    Many of us have had to make significant changes in our lifestyle to accommodate migraine. Life may be a bit boring, but is well worth the changes, in my opinion, if we have fewer migraine attacks. You may be interested in ready this information, The Seven Essentials of Migraine; https://migraine.com/blog/migraine-management-essentials/.

    You mentioned you’ve tried a number of glasses to help you with photosensitivity. But I wonder if you’ve used glasses that are specially designed for people with migraine. There are two companies I know of that have these glasses. TheraSpecs is one such company you can read about here; https://migraine.com/sponsored/sponsored-proven-migraine-relief-with-new-theraspecs-glasses/. In fact a member of my migraine/headache disorder support group says these glasses make a huge difference in her life The other company I am aware of is Axon Opticals and that information is here; https://migraine.com/sponsored/are-you-ignoring-one-of-the-top-migraine-triggers/.

    I hope this is helpful,

    Nancy

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  • By Jules2dl

    Hi UsedtoGarden;
    Nancy is so wonderful at explaining things and providing links to helpful information! I just wanted to give you another more personal perspective.
    I’m 55 now, started getting migraines at 11. They got worse with each pregnancy and miscarriage I had (6 total), and the only time I was migraine free was when I was so anorexic from migraine meds that I lost my period for 2 years. When my period came back, the migraines came back even worse in frequency and intensity.
    When I was about 23, a doctor told me that when I hit 35 and my estrogen started to decrease, my headaches would diminish. At first I cried, because 12 years seemed like forever, but then I held on to that promise as though it was written in stone. I clung to it because the treatment I was getting in the meantime wasn’t helping.
    But 35 came and went, and the migraines remained.
    Over time, triggers can change as well. For years I couldn’t even have a sip of champagne on New Year’s Eve or I’d get a migraine. Now I can enjoy a glass of Moscato without having to fear the consequences. Weather never used to be a trigger for me, now its my worst one. Symptoms can change. I would get dizzy sometimes with a migraine, now I always get dizzy, and often get vertigo so badly that I actually fall down. I used to get aura, now I don’t, but I some times get visual symptoms during a headache. I’ve always been sensitive to sound, but in the past few months this symptom has gotten so bad that a too-loud sound feels like a physical assault on my head; its actually pretty horrific. I love coffee, and limit myself to 1 cup a day, but there was a time for awhile there when I couldn’t stand the smell or taste of coffee when I had a migraine. There was also a whole year when every time I got my period I’d get a migraine with a fever of about a 101f, and I’d be shaking so hard the entire queen sized bed would be shaking. This would last for about a week. It was when my periods came back about a year or so after the birth of my first baby. I’ve never had fevers with my migraines since that time.
    Migraines morph over time. We each need to make our own peace with that. They are unpredictable, and it does not serve us well in the here-and-now to try to predict what will happen in the future. To do so is to drive oneself crazy. As Nancy explained, the many variations of triggers, symptoms, etc., make migraines a uniquely personal disease. Try to just focus your energy on where you are at now. Maybe take 10 minutes a day to just breathe deeply and meditate to quiet your mind if it starts nattering on about the future “what ifs.”
    My youngest daughter was always a worrier, and we had bedtime talks every night. The “Sunday night feelings” were especially worrisome to her, as she thought about all of the tests, reports, etc that were coming up in the week ahead. I would go through the whole week, asking her what does she have to get done right now (Mon night)? and right now(Tues night)? etc. Always reminding her that the future is just a bunch of “right nows” lined up one after the other. It’s not a whole big chunk of work you have to do at one time. That simple concept got her through a Master’s degree in Psychology. No matter what your migraines bring your way in the future, and there are so many new treatments coming out that the future has never looked brighter, there’s no way you can handle them in the present anyway, so why try? Cut yourself some slack, and just be present where you’re at. Even that is difficult enough for us sometimes.
    Hugs
    julie

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