Forums


Living with Migraine

Afraid this is life.

  • By noirek

    I am 32 and for as long as I can remember I have suffered from the occasional migraine. My mom had suffered from them until she had a hysterectomy so when I explained what I felt to her as a child she knew it was more than “just a headache” and was always very understanding. I complained when I was small that heavy perfume smells made me feel yucky and so did Fresca. It wasn’t until a run in with sugar free ice cream that my mom realized I was reacting to Aspartame and we knew that was triggering migraines in me. And this was before the internet and talk about Aspartame. When I reached my teen years they worsened probably due in part to hormones but I also know the teenage lifestyle did not help as well. Late nights (and I have always struggled with insomnia), school and friend stress, ect. I took OTC meds back then and usually just had to make it through the day and have a good nights sleep and I’d be fine again. Our family were not doctor people unless you were lying there dying so no doctor visits for my head.

    After graduation I moved to a city that is blessed (plagued) with Chinooks. Normal brains love them, mine does not. Even though where I lived (live) did (does) experience Chinooks the connection was never made to me. I had no idea weather was a trigger. But something about -30C one day to 5C the next has a way of making my head literally feel like it is going to explode and me wishing it would. This new place I lived did not have the occasional Chinook this year. It had constant ones and my head had no time to recover. For the first time I sought medical help and that is where I was told the weather was playing a part. I was given different abortive meds to try and not a single one helped even a little bit. I could tell I was frustrating the doctor and the people around me. They wanted me to push through it and I’d be fine. They would tell me about people they know who did all these things while they had migraines (the people around me told me this not the doctor). I lost a weight. When I went home for Christmas my mom took me to our family doctor but because I didn’t have time to do a bunch of tests he only prescribed me some meds and told me to keep seeing the doctors there. When I returned the city doctor advised me to choose somewhere else to live. But I needed to finish my one year commitment with the group I had joined. Thankfully winter had set in then and the two month migraine that I had suffered from lifted. I returned home when my commitment was done.

    While the frequency of my migraines didn’t change after that one stint I did become more aware of triggers. Chinooks would wipe me out and other weather changes combined with lack of sleep could bring on a migraine attack. Thirst always accompanies my migraines but if it is one brought on by a Chinook then I get extremely dried out first. I also get a surreal feeling all over before hand with a Chinook triggered migraine. By the end of my twenties the duration and intensity of the migraines had increased. OTC were always useless even if taken in the very early stages nor did they numb that in the slightest. I was taking far more than I should as well out of desperation. I began making trips to the ER when the pain was more than I could take during my attacks. I also occasionally went to the doctor to try different preventive medications. But my migraines were still not frequent. I would have maybe one or two a month a few months in a row and then go several months pain free. Obviously winter was more frequent. There was always a concern that if I had something very important I’d also end up with a migraine but I managed to escape my wedding unscathed. My best friend’s wedding I wasn’t so lucky. My husband has always been very supportive and when the kids were small and I needed to go to the hospital or just couldn’t get out of bed he would miss work and look after all of us without complaining. And his work was good about it too.

    Which brings me to now and how much I miss those days. I miss when migraines were occasional. When I knew that if they were more than I could handle the ER would take care of it. Last April while on vacation I got a migraine. Not surprising. The time of the month it was, air travel, humidity, changing altitudes, destressing, ect, poor sleep thanks to the heat and my 4 year old not caring for being uprooted all piled on to give me a good one. But, when I was back home and it still persisted I was getting a little done with it. I had a week before needing to go back to work but it still persisted. And that was my introduction to Chronic migraines. Because my job requires a doctor’s note if you miss more than 3 days in the year I have to go to ER every time I am unable to work. And since this change in my migraines the ER at the most takes the edge off. More times than not I am given a bed or even a dark room and put on IV right away and treated well. But occasionally I am forced to sit in a waiting room and that is pure torture. We live in a remote location so there isn’t a lot here available medically speaking so my resources are limited. I have been on a few different medications. Propanolol did nothing but make me lethargic and dizzy. I am currently on topirmate which doesn’t seem to be helping. I had one round of Botox. I had my first pain free day ten days after getting that but the migraines came back three days later and have worsened again. Though my doctor is still hopeful the next round shows even more improvement. (I was so excited on that pain free day and the following days the let down of getting so many migraines and headaches after has made me lose hope on that). Abortive medications do nothing. The ones that do help give me serious side effects and I can’t take them (of course, just my luck). I have stopped hanging out with friends. I force myself to do things with my kids and basically feel like I am barely keeping my head above water. I had my first ever CT scan yesterday and I know it won’t show anything but at least when all the people who mean well ask my if I have had some sort of scan done I can say “yes” now.

    sorry for all the whining. I just needed to dump. Sometimes, like many of you, I wonder if my head will ever feel normal again.

    Reply Created with Sketch. reply
  • By Nancy Harris Bonk Moderator

    Hi noirek,

    Thank you for sharing your story with us and being part of the Migraine.com discussion forum – we’re glad you’re here! We all need to vent from time time!

    Weather can be a strong migraine trigger for some of us. I know I seem to get a migraine after a weather front has passed. Let me share our information on weather and migraine here; https://migraine.com/?s=weather&submit=Go.

    A world class migraine/headache expert has said people with migraine need to have very scheduled lives, boring in fact. Maintaining a regular sleep schedule – going to bed and waking at the same time each day – is very important as is not skipping meals, staying hydrated, avoiding any food triggers and getting regular exercise. If you haven’t kept a detailed migraine diary recently I would encourage you to do so. Here is information on keeping one; https://migraine.com/blog/keeping-migraine-diary-basics/.

    Try not to lose hope – there are over 100 medications that can be used to treat migraine. Take a look at this information on migraine prevention; https://migraine.com/blog/migraine-preventives-start/. Something to keep in mind when we start new medications is it can take up to 90 days before we see a reduction in our migraine frequency and severity. Also during this time potential side effects may lessen. The thing is if we don’t give each medication a fair trial we’ll never know which medication would have been to work.

    Botox is FDA approved for chronic migraine and can 2-3 rounds before we see an improvement in our attack frequency. But Botox is not a “cure” it is considered a migraine prevention medication. While on Botox, we still need to be vigilant about our migraine triggers and lifestyle choices.

    Topamax works wonders for some people, not so much for others. The important thing about Topamax is we need to start it at a low dose and gradually tritrate up. Take a look at our complete Topamax profile here; https://migraine.com/migraine-treatment/topamax/how-well-topamax-works/.

    The best thing would be to see a true migraine expert, a doctor who is board certified in headache medicine, which is different than being certified in neurology. Many patients I’ve spoken with have traveled over 8 hours to see their expert, maybe that’s an option for you. Let me share these articles with you about why these doctors are so special and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

    I too wish for my head to go back to “normal”. Most days I’m able to accept my “new normal” other days not so much.

    I hope this helps,
    Nancy

    Reply Created with Sketch. reply
  • By kelly

    Hi noirek
    My story is so much like yours!! I also have become this person living this awful life with chronic migraines and I hate my life! Nothing works and I was praying they would go away with menopause but no that didn’t work either. I’m going to a headache specialist now and I honestly doubt this will be any better but I’m willing to try because I have no life left. I long for those years when I only had one migraine a year and the next day I was fine or even when I had one per month ! I wish you luck. Kelly

    Reply Created with Sketch. reply