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Help! I'm scared and suffering!

  • By Mairead

    Hello all!
    I was diagnosed with chronic complex migraine about 2 years ago when I was 17. I had a few migraine like episodes as a child, but they were isolated and didn’t repeat until I was a teenager.
    I am very overweight, but seem to be unable to lose weight, no matter the changes in my diet.
    In the past few months my migraines have gotten so severe that I lost my job, and I am missing a lot of my classes at my College. I cannot remember the last time I was migraine free for a whole day. Every day, from morning until night, I have horrible migraines. Some of my symptoms include numb/burning appendages, sensations of water trickling down my neck, leg paralysis, double vision, blurred vision, spotted vision, colored vision, sensation of spinning, nausea/vomiting, extreme sensitivity to smell, and confusion. I’m sure there are more, but I can’t think of the rest at the moment. Once, I had a migraine while driving to class and forgot who I was and had no idea where I was or even what country I was in. I was just extremely disoriented. This lasted for about 3 minutes and I pulled over as soon as I started feeling confused. I went directly to the E.R. and they ran numerous tests/scans and said it was just a migraine. I have been to the E.R. countless times, as well as specialists all over my state. I have yet to find a preventative that works for me. I’ve tried 6 of them. Some make the migraines worse, some do nothing, some improve the migraines slightly but have side effects I can’t live with. I have had every test known to man run. I have had EKGs, EEGs, MRIs, CAT scans, PET scans, blood work, and sleep studies. Nothing is wrong with me according to those tests. Migraines have taken over my life. I am worrying about my future, my health, and my safety. I was hoping for some insight from anyone who has had similar symptoms or just anyone with advice.
    Thank you in advance.
    -Mairead

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  • By Becky

    Welcome, we all know the scared feeling. Migraines can scare you and make you think you are dying. You have to continue to try new preventives until you find something that will work. Just think of the fact that it has taken you this long to get this bad so it will take a long to find a remedy. Just realize there is NO CURE for migraines. Just treatments. You need to find a good migraine specialist in your area. I know some of the moderators will have more to say to you. Just realize you are not alone!

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  • By Katie M. Golden Moderator

    Mairead,
    I’m so sorry you are suffering. Your symptoms, while very unpleasant and frightening, are shared with many Migraine sufferers. It’s so frustrating when you feel like you have no control over the Migraines. Rebecca gave you some great advice. There really are an amazing amount of medications to try from preventatives to abortives. You have to work closely with your doctor. What doesn’t work at a low dose may work at a higher dose. Or a combination of drugs may help you. There are also supplements like magnesium, feverfew and butterbur that are over the counter that can be helpful.

    If your Migraines persist and you experience more than 15 in one month, Botox treatments may be an option for you. https://migraine.com/migraine-treatment/botox-for-migraine/

    Do you see a neurologist or a Headache Specialist? A specialist can diagnose on of the 300 types of headaches, while a neurologist spends their time on all neuro diseases including Parkinsons and Alzheimers. Here is a list of Headache Specialist’s by State.
    http://www.ucns.org/globals/axon/assets/10300.pdf

    Unfortunately the trial and error process is needed to find what works best for each person. I hope you get relief soon!
    -Katie

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