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What Happened to My Life?

I’ve been suffering from migraines for over six years now, and while that doesn’t seem very long at all compared to many people on this site, I’m sure everybody would agree that just one day with migraine can feel like an eternity. I’m 23 years old and can vividly remember my first migraine. I was in 11th grade and headed into my physics class (I like to blame the whole migraine thing on physics now). On average I have between 20 and 25 migraines per month. I very rarely go a day with absolutely no head pain. Migraines almost cost me my high school diploma and bachelors. I don’t know how, but I somehow fought hard enough to get through high school and undergrad, however my life is far from where I want it to be.

Migraine Awareness MonthI haven’t been able to pin point any extraordinary triggers yet, and I think that’s because everything seems to trigger my migraines. Honestly, I have so many migraines that I’m never really sure if it is just one continuous headache or one ended and a trigger quickly prompted another one without giving me enough time to differentiate between the two headaches. I do tend to be very sensitive though. Anything from weather changes to fluorescent lights to hormones can affect me. Stress is a big trigger, which is ironic since migraines cause so much stress in my life. Another sure fire way to get a migraine is to eat or drink anything with aspartame. If I have anything with that I will get a level 10 migraine in about 5 minutes, and it’ll last for hours. I’ve gotten very good at reading labels!

As for symptoms and side effects, I’ve had a variety, but there are a few that always occur. Along with the head pain, which usually shows up anywhere from the middle of my right eye to just about my right ear, I have extreme sensitivity to sound, light, and smell, vertigo (sitting, standing, and occasionally lying down), nausea, and numbness or tingling in my extremities.

While my constant symptoms seem to be some of the more common ones, I have many symptoms that don’t occur with every migraine and seem to be a bit more peculiar. For example, when I try to rest during a migraine I seem to have something that is called sleep paralysis. It happens when you’re asleep or partially asleep but you feel awake. You tell your arms or legs to move or your eyes to open, but your body won’t react. I also have problems with my vision. I say that instead of having blurry vision, I have “overly focused” vision. What I mean by that is it feels like I’m wearing glasses made for somebody who has a higher prescription than I. I’ve tried discussing these symptoms with multiple physicians, but they mainly dismiss them or simply say, “hmmm”. I wonder if anybody else has experienced similar symptoms.

I’ve been to many neurologists, been on many medications (preventative and abortive), tried many alternative treatments, and experimented with a variety of diet modifications but nothing has caused improvements. All the diagnostic tests come back “normal”, so the mystery continues.

While not knowing what is causing the problem is annoying, the biggest issue is what migraines have done to my life. I’m not the person I was before they hit. My energy level is extremely low, my memory is terrible, and I have almost no social life. As a 23 year old I’d like to enjoy my youth, but it feels like its been taken from me.

I hope and pray everyday for an answer to this mystery so that I can go back to being myself and have a life led by me and not my migraines.

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

  • cindyd
    3 years ago

    This sounds so eerily similar to me that it is amazing. I experience almost the identical symptoms that you do and have a headache/migraine almost daily. One day my oldest sister had a migraine which she gets occasionally and she was really sick. She told me, “I don’t know how you do it.” I told her that if I stopped every time I had a migraine that I’d never get anything done. I am 54 and have raised three sons and worked at home running a business for years and now work in a prison, but I’m kind of in my own personal migraine prison most of the time. Thanks for a great article.

  • Stephanie
    5 years ago

    I’ve had many of the same triggers although my eyes react the exact opposite. My eye become so blurry I loose the ability to read, which is cruel for someone who loves books. I have been to Wills Eyes in Philadelphia two different doctors, two different diagnosis. During a migraine I usually have to wear sunglasses all the time including when indoors. It can be a little embarrassing wearing sunglasses while at a movie, but the scenes that go from dark to light are a trigger or can make a mild migraine become intense. I am never without sunglasses, spare pairs in car, purse nightstand etc. currently on Botox and fiorcet. Cancelled plans unable to really commit to anything and never knowing if today is going to be a good day or not. My life, my families life revolves around how I feel. Some times I lie telling my husband I feel fine just so our family can enjoy time together, it’s painful but my children deserve to have family fun instead of worrying about my headaches.

  • cindyd
    3 years ago

    Sorry about your severity of your migraines. My vision gets so blurry that I have a hard time reading and hardly ever read because of the frustration. I too have to do the suglasses thing and it can.be so embarrassing to do, especially at church! Bleh

  • BethBlue
    5 years ago

    Please try Botox. Please. It has made such a difference. I know you’re feeling like there’s no hope (especially during this time of year when it’s humid and miserable and we ALL feel sick), but please know that everyone wants to help you. It’s difficult when you can’t pinpoint a trigger — I know, I can’t do it either, and I’ve been suffering for decades. Instead of looking for a cause, I’ve simply looked for relief. I’m struggling now (too much weight loss from Topomax — I had no idea that could happen!), but I’m hoping that I can find other avenues of relief. RELIEF is the objective; remember that!

  • MigrainePuzzlePieces
    5 years ago

    Your experience sounds so similar to mine. You are not alone. In fact, this post motivated me to write one of my own. If you’d like to read it here’s the link: http://migrainepuzzlepieces.wordpress.com/2014/06/02/constant-pain-in-response-to-blog-post-what-happened-to-my-life/.

    I read the rules but didn’t see anything about directing others to their blog. If this is not acceptable I apologise and once told will never do so again :).

  • mycrazymigrainelife
    5 years ago

    I know exactly what you are going through. I am 21 years old and I have started having migraines at the age of 9, but they became chronic 2 years ago. My migraines are also close to daily and I don’t really have headache free-days. I’m so sorry you are going through this too. It is definitely a hard journey, of triggers, medications, and the fact that pain affects every single aspect of our lives. I have tried over 18 preventative+abortives and I have had little or no relief. I have nothing to take to stop a migraine because nothing works on me. Chronic daily migraine has really affected me in school and somehow, like you I made it through High school and college. I am currently in university. It is so hard to go through school living with pain everyday. It is always a struggle and a challenge to get through school with so much pain, but also with the side effects of the medications like fatigue and concentration problems. But I am extremely determined, and very motivated in school and I guess that helps a little. But even with all that determination, I still struggle a lot. I think this semester I am going to take less courses so I can manage.
    In terms of triggers, I feel the same way as you. I have a migraine everyday, so basically I try to find what makes the migraine more severe. I have avoided caffeine for a long time, I avoid MSG, aspartame, nitrites, and anything diet. I have no idea what my triggers really are.
    I have been through 6 neuros. I have cried after many of my appointments because of terrible things they have said to me. I have now been with one neuro for a year. I am going off all my preventatives, and I am going to try DHE injections. I have to inject myself everyday, until the migraines get farther apart and then use it when needed. I am kind of freaking out about doing this. I have to learn how to inject myself subcutaneously, and I don’t know if I am brave enough…Who knows maybe it will help! I feel like this is always a fight. Fighting against the monster in our heads. I feel you and I really truly hope that you find a solution to decrease the freq of your migraines! I have a blog that I write in, and that really helps me. It really helps to let it all out. I also post some artwork on my blog. Distractions only help so much, but they still help. Maybe if you check out my blog, you can find some new ideas or just someone who can relate to what you are going through. PS: I have also experienced sleep paralysis and it is very scary!
    http://mycrazymigrainelife.wordpress.com
    I wish you the best of luck, and all the best!

  • Yodaris
    5 years ago

    I am 45 years, and over the past 32 years I suffer of migraines. The last 5 years I have a continuos migraine, I tried with everything, but now I have tried with Botox and my life has change, from a migraine everyday, to only 5 per month, also I have a physiotherapist for pain in neck that is helping me a lot. So I recommend trying with botox and say goodbye to all the pill.

  • NikoNic
    6 years ago

    I am 21 now and over the past year have finally gained control over much of my life. It has been a long painful 10year journey since I had chronic migraines. I had them 27-29 days per month. I know how frustrating it is to have a level ten migraine,take a different medicine to try, and yet 3 days later still be suffering with the same pain. It gets hard when there’s no break to have a painless second to yourself. When I was still in high school it was hard getting through school and maintaining my grades. I don’t know how i managed to make great grades through college so far with such daily set backs.
    I am also an expert label reader, have double vision, sleep paralysis, and hallucinations when I am tired. I am also getting diagnosed with Narcolepsy and my nuerologist has me on topiramate because depakote wasn’t working as much and I was tired of increasing dosage. I have tried all sorts of medications (including homeopathic), done head and full body Mris, and catscans. I am stuck with no real known cause, just the triggers of most the world, i guess.
    I do not eat any chocolate whatsoever and saw some improvements. No aspertame, Msg, caffeine, and I try to stay clear or tyramine but It is hard being that it is in alot of foods even nuts and bananas.
    I have no working medication to stop my migraines which can get depressing if i allow myself to think it will never end. I HAVE HOPE. I suffered alot but with no hope i have nothing. Lately I have had breakthrough improvements going from 28 days to 10. I dedicate myself to school and work with a smile on because I feel free of pain for once.
    It is tough, and I still worry they will be come back like before, but I love myself. I kept strong through the hard times so I can finally enjoy some good days and hopefully more FREE days are yet to come..for me and for you.
    I wish you the best in finding what some triggers are so you too can see improvements. I found jumping in a freezing cold shower and letting it run over my head sometimes seemed to shock the migraine out.. (or help my inflamed blood vessels)
    when im in that much pain i don’t notice the temperature of the water anyway so it’s not so bad. I also tell many people about my migraines so they don’t think I am avoiding the world the days I need my peace and quiet but not everyone understands and that’s ok with me. I am strong, you are strong, its what matters.

    **Edited by moderator due to inclusion of personal contact information**

  • sams
    6 years ago

    I know exactly how you feel I have been suffering with migraines for over 7 years and they started when I was in high school and it makes going to school very difficult. I use to have a migraine or severe headache everyday now I am down to a moderate headache everyday. With they occasional migraine a few times a month but I can go in stretches where they last weeks. I think I have tried almost every medication (preventative and abortive) out there, I watch my diet, but again I am there with you where I think almost everything is a trigger or I just get to a tipping point. I have seen many doctors of all sorts but I still have yet to go one day without a headache. Have you tried a homeopathic doctor or done a chiropractic care program the incorporates massage and PT? I did that and it helped give me SOME relief. I have a migraine symptom similar to your “overly focused” vision, I guess I consider it a little bit more like tunnel vision for myself. Hopefully someday soon we will be able to enjoy are youth, headache free…

  • jenashley
    6 years ago

    I can definitely relate. I’m 26 and my first migraine started in high school and it lasted for a solid month. Then they got to the point of being so frequent that when someone would ask what my triggers were, I couldn’t tell them. Not one thing in particular seemed to trigger the pain. I got in touch with a pain doctor here in Dallas and wound up having RF done on the nerves in my neck. I’m proud to say that I now have much less migraines than I did before. I recommend the treatment, but unfortunately it’s not permanent. Might have to have it done again in 6 months to a year. Good luck with your migraines. I hope you find something that helps.

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