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Turning on a Dime: Migraine and Unpredictability

Turning on a Dime: Migraine and Unpredictability

A common frustration shared in many accounts of life with migraine, is the true unpredictability of when an attack may strike. Sure, keeping food journals, avoiding certain environmental triggers, and medications may work, but what about for those times when uncontrollable weather changes strike at a moment’s notice, or a migraine attack comes as a total surprise, with seemingly no single cause? These moments have been described by some of you as “the most frustrating part of this disorder”. We asked you, the community, to share your stories or weigh in on the fear of the uncontrollable with migraine. Cancelling plans, losing friends, disappointing others, and not feeling understood were common sentiments shared by many of you.

On Making (and Cancelling) Plans

“I am afraid to make big plans because I’ll have to cancel if I get a migraine attack.”

“I can SO related to what you are saying! I hate to make plans because it seems like every time I do, God laughs and I’m down with a migraine.”


“I can’t tell you the number of times I have had to cancel plans due to migraines. It makes me feel like a social outcast.”

“I wish people could understand that we don’t WANT to miss out on things or cancel at the last minute.”

“I hardly ever make plans anymore. If something comes up and I feel well, then I go, but no more concerts or plays or anything I can’t cancel at the last minute.”

“Whenever I have an event, I always say ‘contingent on how I feel’, not everyone understands.”

“I am a spin instructor and had to cancel all my classes at risk of messing them around last minute due to a migraine.”

On Your Support System (Both Good and Bad)

“I’ve already had damage to my friendships because of people that just don’t understand I’m not making this up.”
“I’ve lost friends and family due to this neurologic, painful, genetic disease. Lost touch, couldn’t keep up, cancelled many plans and appointments, no shows, missed important deadlines/due dates, tardy/late, hurt feelings.”

“With family members, I struggle making plans or making them understand that I simply cannot make a pre-arranged date… which is frustrating for them and myself and in turn, guilt raises its ugly head. It’s a no win battle!”

“It’s been the most frustrating thing to train my extended family that when I make plans with them they need to always assume it’s a “let’s see” or not definite. Some really understand, but others are so obstinate with plans and schedules they act as thought I’m just being difficult or dishonest.”

“This part sucks because it’s usually your family! Yes, they understand, but you still feel like you’re letting them down no matter what they say!”

“I have talked to my good friends and family about why I don’t make commitments to plans anymore, as I don’t want to cancel last minute. Those that understand will stick around. Keep trying new things to help with your quality of life. It’s all you can do. And appreciate those people who understand.”

“Fortunately, I have a couple of very close friends who go through the same thing, so when we make plans, and one of us has to cancel at the last minute (second), they completely get it and are possibly in the same position.”

“Thankfully, I have a very understanding and supportive husband and kids.”

“I am thankful our family and our close friends do understand migraines.”

On Anxiety, Stress, and Fear

“You always have the thought in the front of your mind that it will ruin your day, especially if you have something fun planned.”

“I am getting married and am scared to death I’m going to have one. I don’t even leave home for long anymore without a small pharmacy in my purse.”

“I can’t leave home without meds, dark glasses, and a hat, and don’t go out much on my own…. usually need a driver. Get to feeling like a prisoner in my own body. Migraine has made my world a lot smaller.”

“I was SO afraid, booking my trip to Cuba. All that money, and my best friend’s good time…all weighing on my having or not having a migraine. It was really stressful.”

“So stressful and anxiety provoking!”

“The fear of failure… letting others down when an attack strikes, especially when you’re out socially and enjoying yourself.

“I live in fear daily of them.”

“I want to be in control of my life again!!”

Thank you all for your incredible thoughts and stories. It is clear that you are not alone in this daily battle!

Comments

  • RockyMtnGuy
    3 years ago

    I discovered most of my migraines were cause by sleep apnea. My dentist diagnosed it, she looked in my mouth and said, “I’d like to test you for sleep apnea.” And, it turned out I stopped breathing about 20 times per hour and my blood oxygen saturation dropped to 85%. A friend who worked in the ER said he’d put me on oxygen if he saw that. So I got a CPAP machine and that eliminated 80% of my migraines.

    Other than that, it’s weather. I am a day ahead of the Weather Channel in predicting rain storms. My wife asks me, “Do you feel a migraine coming on?” and if I say “Yes”, she takes an umbrella. However, for a full-on migraine trigger, you can’t beat a hurricane. A bunch of us were kayaking for a month in Baja, Mexico and two hurricanes came rolling through. I was our group’s distant early warning system for hurricanes. I could detect them coming hundreds of miles away. When I said, “I think I feel a migraine coming on,” they would start paddling for shelter. I think this is kind of a paleolithic survival thing, and the reason so many people still get migraines is that our antediluvian ancestors who got migraines survived because they were lying down in the dark at the back of the cave holding their heads when the hurricanes hit. The other people not so much.

  • 7wxnqp
    3 years ago

    I know that some of the ppl that are posting on here and reading about dreaded migraines are so miserable but I want to say, as a 70 year old woman, you are blessed and I know that sounds so shallow to you if you are suffering right now, but when I suffered my first migraine just after an appointment to have my eyes checked after having some strange eye problems I suffered, I was 13. Oh my parents took me to other specialists that changed my glasses and etc. and of course there was the always the belief that I just did not want to get up and go to school, which of course while I was suffering I did not want to. Or there were dates that thought I just did not like them because I said I was going to have a HA and needed to go home. And on and on until the point that I actually was hospitalized with a “stroke” because I became aphasic along with my numbness along with my scotoma. How wonderful was the day that I finally went to a neurologist that just diagnosed me with MIGRAINE headaches. Now that did not help relieve them but it explained all the symptoms that scared me so badly. The pain then had a name and some understanding from those in my family.
    But there was no appropriate treatment other than just suffering through, vomiting, having such an increased sense of smell, sensitivity to everything. By the time I was in my late 20s (and yes I was treated as a drug addict at the local hospital, because there was nothing to do for me but enough pain med to make me sleep and nausea medication to stop vomiting). I had managed to get all the way through college and had gotten a degree in biology which I followed by getting a nursing degree. I actually made it through after barely making it through high school, due to my migraines.
    At that time the neurologist I was going to suggested that I have a hysterectomy along with bilateral removal of my ovaries as it was believed that since my HA did not start until I went through puberty the sudden cessation of all of my hormones would revert me back to a prior state. I had some mild female problems at the time so I was willing to do anything to stop the terrible dooming always pending migraine. That did not work, after all of that it did not work.
    I “ran the gamet” of medications given to me by various doctors which included but were not limited to anti seizure medications, beta blockers, belladona, ergotomine and too many more to even count. I visited so many different neurologists and had so many tests but the results were always the same and no “cure”. I also worked at a hospital that knew my problem and because I was a very good and hard working nurse I could go to the ER, get treatment, have a nurse relieve me at my station and lie suffering in an empty room until my husband, mother or father could come to drive me home. I always carried something to vomit in. It was awful.
    Then along came the Imitrex and I truly believe it is a miracle drug. My “cocktail” now for the headaches is an Imitrex, a mg. of xanax, a aspirin and a hot cup of coffee and typically it will abort all the symptoms but a much milder headache. If I have a right sided visual problem, numbness and inability to find words it is a left sided headache and they are much milder than the right sided ones that usually require the medications again an hour later. I also have found a great deal of relief in Midrin two hours after the initial “attack”.
    So I am not saying anyone that suffers these are blessed because you are not. What I am saying is that there are forums like this one and you realize you are not alone. There are others that have this mysterious headache going on. There are also medications that though they do not totally allievate the pain and suffering you feel they do work to abort some of the pain and suffering, and truly suffering it is. Mine are unpredictable. I have tried keeping a food diary with no ties, I have been through almost unbearable stress with no headaches I have even been having a really good time and had them, I was also told after about age 50-60 I would not have them and that is not true. I had one of my worst last week. I have gone as long as two years without one and had as many as three a week. That is what makes them so bad you just never know. As I age I pray for the next generation of sufferers that there will be a cure.

  • Mixi
    3 years ago

    Reading your story is like “looking back” at my life, except for the age as I am 56 years old and the part of beeing 2 years free of migraine. But the rest is exactly the same. The doctors also told me I should be migraine free when ménopaused BUT it’s been 5 years now and still having as many migraines as before. I have 4 to 6 migraines per month except in summer when the humidity (humidex) is very high(Québec,Canada) I have up to 10 migraines/month. Imitrex do work for me but I have to go to sleep for 4 to 5 hours and when I wake up I am pain free but exhausted…. story of my life.

    So thank you very much for sharing your story as I know now I am not alone!

  • DonnaFA moderator
    3 years ago

    Hi, 7wxnqp. Thanks for sharing your incredible story, and your words of encouragement! We’re glad that you’re here. -All Best, Donna (Migraine.com team)

  • Brooke H moderator
    3 years ago

    Hi 7wxnqp, Thank you for taking the time to post about your experience with migraine from when they first started up until now. I’m so sorry that you have struggled especially during times when we did not know as much about migraine as we do now. We share your hope that more research and progress will be made going forward. I’m glad that you found this community and can know you are not alone! Please feel free to share and receive support here anytime. Warmly, Brooke (Migraine.com team)

  • DinaMay
    3 years ago

    I have unpredictable migraines that are like having a wildcat leap down from the sky and grip your skull with merciless ferocity, it’s claws piercing my neck. When this beast knocks me down there is only one possible reaction: take medication and spend the day in bed. Even when medication provides relief, I feel like I’m at the bottom of the ocean, crushed by the weight of the stormy waters above me. I can accomplish nothing, no matter how I try. Calling in to cancel an appointment takes all the strength and concentration I can muster. Doctors sometimes accept migraine as a reasonable explanation for my missing the appointment. What’s most frustrating is when they chareg me anyway as punishment for not giving 24 or even 48 hours’ notice.

    But I must live with this beast. His grip loosens from time to time but he will never let me go. The only way I’ve found to cope is to accept him. When he at his most vicious, when I’m lying at the bottom of the stormy waters, I must simply lie there. Struggle is futile. Rage is futile. I must simply let the storm pass on. In so doing, my captive spirit steps aside into another world or a different dimension. From this mysterious world I can observe the beast/storm dispassionately. Therein lies my peace, my salvation.

  • JanetH
    3 years ago

    I hear everyone on not making plans that cost money, and having to be flexible and maybe cancel. I feel bad because my comfort in driving has been affected. So far, I can get myself to work and most errands around town, but not much more than that. My meds also affect my balance, so multiply that by driving at 70 mph in aggressive traffic–no thanks.

  • SilverPhoenix13
    3 years ago

    Work….. Last Tuesday, I had a migraine hit me seemingly out of nowhere about an hour before I had to go to work. It’s never good when you have to call out with such little notice.

  • Falcon6
    2 years ago

    I teach at an elementary school and this has happened twice this year so far. I feel terrible for giving such short notice, it really creates a problem for my co-workers to have to try to cover my class. Fortunately, they have been very supportive, as they have seen me at work unable to function due to migraine. If this keeps happening though, they may not be so understanding.

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