40 and still living with Migraine

I started this roller coaster of life when I was in my 20’s. At the time I worked at a healthcare group and my regular doctor was on staff. I felt as though I was a weekly, if not at times a daily patient. At the time Imitrex was the it drug of choice for doctors to use. However I found that it only made matters worse. Not only did my migraine not go away, it got worse and I also felt as though I was having a heart attack. This is when I became a drug guinea pig. I was prescribed every type of drug they could think of, and nothing seemed to work. Then along came Topamax; which worked until I found out I was pregnant. I had to stop all medications and hope for the best. My migraines seemed to ease off, but the pregnancy presented it’s own problems and I was quite sick most of the time. I lost my job in my eighth month and ended up not working for the next 7 months.

When I returned to work, at a new job, my migraines were pretty much gone. I spent the next 2 years thinking I had beat them. Boy was I wrong! They came back, but were workable. I pushed through the pain and all my lovely side effects; light, sound and smell sensitivity, nausea and numbness. Doctors again could find no drug combination that would work. Even the Topamax didn’t work.

Along comes August 2011 – It was shortly after my work day started, and I could feel the onset of another migraine. I took the meds I had to hopefully keep it at bay enough so that I could make it through the day. About 45 minutes later I experienced the scariest thing I had ever had – my whole right side went numb and I could barely talk. 911 was called and I was rushed to the hospital with what was being thought off as a stroke. I was terrified. An MRI was done and came back clear. No stroke! But I was told that I was experiencing a massive migraine. Up until this point I thought I had experienced the worst pain possible, and never thought it could get worse. That day showed I had been wrong.

I have been on medical leave ever since, and have had many attacks just like the one that day. I now get migraines more often than not. Doctors keep trying all they can, including Botox, but I still get no relief. I am a shell of what I once was. Even on my good days, which are few and far between, I live in fear of my next migraine. I have a 10 year old daughter who has had to suffer as well. She has had to miss out on school events and fun trips because I had a migraine.

Friends and family have tried to understand but how can they understand something I don’t! I get tips all the time of them on things they read or saw on TV. As though I just sit not trying everything I can already.

My hope is that someday I can get to where I only get maybe one or two a month. It used to be that they were gone, but at this point any relief would help!

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Comments

View Comments (7)
  • chronicKenny
    5 months ago

    I have a very similar experience

  • Crystalrz4
    4 years ago

    Has any of your doctors mentioned Hemiplegic Migraines to you? That’s what your severe attack sounds like to me. They mimic strokes. I suffer from Hemiplegic Migraines. You might wish to look up this type of migraine and see whether you think enough of the symptoms match yours. There are tests, including DNA tests that can reveal whether or not you have this type of migraine. There are also Hemiplegic Groups and Migraine Groups on Face Book that you might be interested in joining. They tend to share a lot of good, up to date information on migraines. I’m on several of them. It’s great to be able to talk to people who “Understand” what you are going through.
    I’ve had migraines since 1956, when I was 4yrs, they went Chronic Daily in 1986, and Hemiplegic since 2005 (?) if I remember that last one right! I hope you find some answers.

  • Lifenotlived
    5 years ago

    I’m 40 now. I have just as many migraine days as non migraine days. As you know the non migraine days you can’t plan for and usually your weak from meds you took for migraine days before. I’ve never found a cure or base cause to cure so I’ve never really seen the point in “starting a life” or what most people do. I mean who would want to hand out with someone who is sick all the time and getting out of shape from being sick and when not sick needing to work my ass off not go do fun things as I need to try to make up for time lost. I’ve never gotten married or even bother dating anymore, no kids and I don’t buy anything I haven’t saved for as Im afraid I won’t be able to make the payment some bad months. I love doing labor work like yard work, home improvement projects but now I hardly even keep my yard cut every 3 weeks. Im trying yet another cleanse thing and going gluten free. I actually read at this place where they start off taking everyone off everything that 73% of migraine end up being triggered by gluten. I sure do love stuff with that in it but hell I chop off any limb they wanted to not have migraines anymore. I remember people use to say when I was a kid ” at least you have your health” to make someone feel better. I thought WHATEVER. Now never a truer statement ………”without your health life is nothing”. Im fortunate to have a modest home at least paid for. No man or help with things like stacking cords of wood and bringing it in to heat the house and a ton of other things down to “bring me an ice pack pls” when Im dying of migraine but it gets really depressing. I look around at what (my yard) looks like an abandoned amusement park falling in dis repair. Im scared to get anymore pets after these as I really do feel worse in the past 2 years than before. Im afraid something is going to happen.
    Imatrex has always been what I use to stop migraine when it starts for 20 years. A new doctor gave me Topamax to slowly work my way into trying. I per nite the first week- 2 per nite the next week-1am2pm 3rd wk. …… Not sure why it need to be so gradual. As usual Im hopeful but ya know……nothing had ever prevented them so far. I really wonder about the botox thing however 7 to9 on the placebo v botox isn’t that great of a ratio. We shall see…..

  • Donna
    5 years ago

    I too have numbness, tingling, slurred speech, stroke like symptoms but no head pain with some migraines. Others hurt so badly that I can’t function. Cold, dark room and silence doesn’t even help. Rescue meds didn’t touch the last major one. Trying Botox next month since nothing else works. I have had migraines since my early 20’s. You’d think in 30 years they could figure out why they occur and how to treat them.

  • Jenni
    5 years ago

    I remember Imitrex. I thought I was having a heart attack as well, only to have the doctor say, “No, that’s normal.” I am 40 years old now. I had my first migraine at age 17, and it lasted for 4 days. I have lost more jobs from missed work than I care to mention. I am considering going on disability. Quality of life can be non-existent with a migraine.

  • Haeley Derby-Nardone
    6 years ago

    I have had migraines since I was…? Too young to remember (my mom tells me she thinks around 1 or 2 years old. They got bad in highschool, I missed half of my junior year and didnt fail only because I made up ALL the work on my good days and had doctors notes for every day I was absent. Now I am 32, cant deal with the topamax side effects and keeping my fingers crossed for help from Botox. I expect to have them till I die at this point. I will try anything (and have up till now) but I have little hope for any of it anymore.

  • Dori Fritzinger
    6 years ago

    Jennifer, I am 54 years old – I’ve had migraines since I was 9 years old. But 5 years ago mine turned ugly. All the symptoms of a bad migraine but with the addition of numbness and seizures. I too went through all the stroke tests. Yes it is very scary!!!!! My migraines hit without the extra symptoms but they are severe!! When the additional symptoms hit I end up in the hospital due to swelling in my throat that make swallowing difficult to near impossible. No meds have stopped them – I am on anti-seizer meds to try to stop the extra complications – but break through still occur just spent 2 weeks in hospital and are learning to walk with a left foot that didn’t wake up. Family has been great but my children are grown and a big help. My grand daughter is 13 and I understand the feeling of missing out.

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