My story

I am a 32yrs old female with daily chronic migraines and daily chronic headaches. The headaches are a pain level of about 8 to 9 on a level 10 scale. The migraines are 9.5 to 10, and beyond. My mother had chronic migraines for almost 40yrs. After menopause and with prevention medications, and Fiorocet, her migraines are mostly under control.

I got my first migraine when I was 13. The pain and vomiting was the worst pain I had ever felt at that time. It was a cakewalk compared to how I feel now. I played several sports when I was young and had multiple concussions. I also sustained one in a car wreck. The migraines didn’t get unbearable until I turned 20.

At first,over the counter medication worked. Then the pain and duration got much worse. I couldn’t find a doctor who would listen or believe how bad they were. When I found a neurologist who listened he tried Elavil and Inderal,which seemed to work for a time. Then it stopped working. The pain started to get much worse. I tried what felt like everything.  All the usual preventatives, unusual preventatives, and all the Triptans. I’m allergic to all Triptans, Reglan, and Compazine. I can’t take any NSAIDS either. They cause serious chest pains and stomach pain.


For a long time I just suffered in silence waiting for a doctor to help me. The er became my only relief. Only IM shots of Demerol or Nubain with Phenergan worked. I’d be able to go weeks or a couple of months before breaking down and going back to the er. I’m now back on Elavil, Inderal, B-12, and Phenergan injections at home. The shots are given to me by my big sister. My sister is my biggest supporter. I wouldn’t be able to handle this without her.

I use Oxycodone for days when I absolutely cannot get out of bed it hurts so much. I only take the Oxycodone twice a week. And if that doesn’t work I can get a shot of Morphine,Ativan, and Phenergan. I can also get a treatment consisting of IV Benadryl, Ativan, and Phenergan. I can get either treatment twice a week. I try very hard not to use the Oxycodone or my treatments. But if I have to, I try to use the non-narcotic treatment. I’m in the process of trying the CEFALY. It’s a headband that’s supposed to work on the nerve in the forehead. So far it isn’t working. I’m struggling everyday just to get out of bed.

I do have an appointment in Arizona with the Mayo Clinic in early September. If anyone has gone there, I’d love any input or experiences you’ve had there. I’ve been to the Diamond Headache Clinic in Chicago. I stayed a little over a week. I’m from a very small town in Kansas so it’s been a challenge to get expert help. I felt a little better during my stay, but it didn’t last. And the best neurologist I found left private practice as did the Dr. from the Diamond Clinic. My GP has been a godsend. He believes me and prescribed my two a week treatments.

That’s my story, knowing all of you are out their definitely helps me have faith that someday I will feel better.

Thank you.

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

View Comments (5)
  • Kim Leonoudakis
    4 years ago

    Good luck at the Mayo Clinic. I have not been to them. I don’t know how far you are from Kansas City, MO but I heard of a place there called Center for the Relief of Pain. Someone on this site got their neuro-stimulator implant there. I got mine in Dallas at the Reed Migraine Center. It gave me my life back. I am 53 an have had chronic daily migraines for almost 20 years. It’s not a cure but a way to manage them.

  • 4 years ago

    Hi Erin. So sorry to hear you are suffering so much. I have had periods of time when my migraines were ‘very very bad’. I stopped the narcotics and it took about a year for them to become just ‘bad’. Two things have helped with pain and migraines: steriods, and mindfulness meditation. I hope you find relief in your future.

  • Erin author
    4 years ago

    I’m glad your migraines are now just “bad”, instead of very,very bad. Through out these migraines, I stop taking the narcotics to make sure I’m not having MOH. It doesn’t improve, the migraines actually get worse. I’ve also discussed the issue of MOH with both my Neurologist,who has migraines and mostly treats people with migraines,and with my PCP that I don’t appear to be suffering from MOH. I’m seeing my neurologist on the 20th this month. He’s out of ideas for the moment,but he wanted me to go to the Mayo Clinic. I’m very ready to hopefully find some better preventatives and an abortive. Thanks for the comment.

  • Katie M. Golden moderator
    4 years ago

    Erin,
    I have not been to the Mayo Clinic, but I’m glad you were able to get in and hope they are helpful!

    The meds you mentioned that you use on a daily or weekly basis are good at helping for someone with such severe Migraines as you have. However, I’m concerned that using these rescue meds two-four times a week could be giving you Medication Overuse Headache (MOH). Too much of these potent drugs can actually exacerbate the Migraines. For a little while you’ll feel better but it won’t last as long adn the headaches can return with a vengeance. Here’s more info on MOH: http://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/

    Slowly weaning off some of these meds or at least the frequency may be helpful and it may be something that the Clinic requires you to do. It may be a good idea to bring a headache diary with you that includes how often you use the meds. It could help the doc to find patterns. Here’s a link to a template: http://migraine.com/migraine-meter/

    I hope you’re appointment is successful and you get some relief soon!
    -Katie

  • Erin author
    4 years ago

    Thanks for the suggestions. I try to avoid using both as often as I can. Sometimes I don’t use either to clear out my system. I also prefer the Benadryl treatment. Except on Wednesday,they had to stick me nine times to get the IV. The migraine was worse than that,but it was incredibly awful. I’m definitely hoping for better preventatives,and a better abortive. I’ll check out the links.

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