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My Ever-Changing Pain Monster

Hello, my name is Robert and I’m a chronic migraineur. My relationship with migraines began about twenty years ago, following a move to the beautiful state of Colorado. My first weekend in Colorado, I decided to venture into the mountains to explore the beauty of my new home. It is there in those mountains that I experienced what I would later come to call, my first migraine.

My first migraine began with sharp, hot poker type pains on the left side of my head, near the temple area. The pain quickly intensified bringing with it sensitivity to light, sound and smell. I was bedridden for three days. My PCP incorrectly diagnosed it as altitude sickness. After all, I was new to Colorado and had just visited the mountains. It was only with subsequent episodes that did not involve high altitude that she began treating me for migraines.

Those first few years, I only had two or three a month, which was quite manageable with traditional migraine medications. As the years ticked by, the monthly numbers began to climb. Three turned into six, which turned into twelve. I stabilized around a dozen a month for many years. IMITREX was my rescue drug of choice, along with 800mg of ibuprofen.

In 2010, I began to experience a sharp increase, fighting over twenty migraines every month. My PCP felt it was time for a neurological evaluation. It took me three months to be seen by a Neurologist. He diagnosed me with chronic migraines and recommended Botox. It took my insurance company another two months to approve the injections. By the second round of Botox injections, the number of migraine days dropped to ten per month. From twenty-three to ten…that’s a miracle. I finally dropped to three per month and felt like Botox was my miracle drug.

Fast-forward to 2015. I’m suffering almost daily migraines. They sometimes begin with the wonderful jagged half moon aura; followed by the sharp, hot poker pain on the left side of the head behind the temple. Nausea is usually present and often results in bouts of throwing up. It now takes two Imitrex to experience any relief and even then, it often only knocks the pain level down to 5 or 6. I’ve been in ER twice in the past few months, unable to control the pain on my own. My wife and daughter take vacations without me, only because I know they won’t be stuck dealing with my chronic migraines. So I suffer alone, wishing I could be normal again.

I have a deep compassion for anyone living in chronic pain. Even the most basic life tasks become a challenge. Perhaps our greatest gift is our tenacity in seeking a treatment path that will finally quiet the pain monster within our head. Relief is possible. We need only keep looking, one day at a time.

Wishing you all a pain-free day 🙂

-robert

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

  • Katie M. Golden moderator
    4 years ago

    Robert,
    You seem to be an expert at understanding your Migraines and I’m sure you’ve tried so many things to get them under control. I hope your new diet is the trick.

    I did want you to know about Headache Specialists (sorry if you already know about this, but it could help anyone else reading this). These are neurologists that have special training in the over 300 headache disorders. Regular neurologists cover a wide range of neuro diseases (like MS, Parkinson’s, etc) and are not always up to date on the latest in Migraine treatment. Due to the number of headache/ Migraine days you experience, I would highly suggest finding a Headache Specialist. Here is more info: http://migraine.com/blog/how-are-migraine-specialists-different/

    http://www.ucns.org/globals/axon/assets/10300.pdf

    Best Wishes,
    -Katie
    Migraine.com Moderator

  • Allison Filek
    4 years ago

    Thank you for sharing your story, Robert! My husband’s migraines became chronic and transformed after he moved back to his hometown in the high desert mountains of BC Canada. We started to track barometric pressures and have figured out that the drastic pressure changes is a consistent trigger. It is as if the brain has become hypersensitive after prolonged exposure to chronic triggers and just stays ‘on’. My husband and I are both family doctors and his chronic migraines have now disabled him out of the practice of medicine. For the past 5 years, we have been experimenting with trips to Honolulu and San Diego which have the most stable weather and he is improved! You might consider these as family vacation spots. This horrible disease takes away so much but I hope you can experience a vacation with your family.

    Interestingly, I, too, was bedridden with my first migraine when I lived in Greeley, Colorado and my 2nd one was in our current high mountain town in BC! We have to consider a move, I think!

    The other thing we have been experimenting with is the ketogenic diet which has been used for years to treat juvenile epilepsy and since chronic migraine is a type of refractory seizure, what have we got to lose? I think that it has helped him somewhat.

    I have been reading a lot about what causes migraine which remains the ‘holy grail’ of migraine research. There is some evidence that this neurological disease is modulated by genetic, immune, vascular and inflammatory factors, very similar to diseases like Crohn’s, fibromyalgia and rheumatoid arthritis! So here’s to hoping we find new treatment options and the lessening of the suffering that comes from having disabling migraines.

    Hope you have a functional day,
    Allison

  • Sylvia T
    4 years ago

    Feeling with you Robert, I know exactly what you mean….and thank you for your article and for sharing your story, you are helping people like me, it is so good to know I am not the only one! Wishing you a day free of pain! Or days….:)

  • Anne
    4 years ago

    OMG – daily migraines – I can’t even imagine. I went from about 15 to btwn 8 and 11 with Botox depending on the weather. The change in pressure systems is my main trigger. I’ve also just discovered I may have thyroid issues and that can aggravate migraines as well. You have so much courage to be able to even write this with daily migraines. Unless you’ve experienced it, you can never know how debilitating a migraine is – not just the pain, all the other stuff that goes with it. I hate that we have to be constantly advocating for ourselves – it’s exhausting. I wish my neurologist had said ‘you seem to be exhausted more than normal with migraines, let’s test your thyroid because there’s sometimes a connection’ but he gave me yoga therapy instead because he’s convinced i’m too stressed.

    Imitrex stopped working for me and now Relpax is the only thing that does.

    Thank you for sharing your story – I am hoping for a break in the cycle for you. I hope your wife and daughter know how truly brave you are.

  • RobertCan author
    4 years ago

    Hi Anne – I wrote my article weeks ago on one of the few days I did not have a migraine. Didn’t submit it until this week. I’m glad you can’t imagine daily migraines but 15 is high enough to give you a sense of how debilitating it is to have so many migraine days. I too am affected by weather. Its one of those triggers I have no control over.

    Your connection to thyroid is something I’ve not heard before but I’ve learned that treating migraines is a very unique journey.

    I’m happy to report I’ve had a break in my cycle of daily migraines. I’m on Day 5 without a migraine. Its the longest period in months without a migraine. I recently changed my diet to 70% raw juice and food so I’m wondering if I’m on to something good? Time will tell. Thanks for sharing your story. Wishing you a pain-free day – robert

  • Sunporch51
    4 years ago

    Sorry Robert and I really do feel your pain. Up until about a month ago, I was having 15 to 20 headaches a month. About a month ago I started taking Feverfew, magnesium, raspberry keytones, garcinia cambogia and B12, 1000 mgs. These are all things that I’ve read about to help with migranes. I also use Imetrix and see a neurologist. What no one recommended was physical therapy. The PT that I went to taught me that my posture was part of the problem. Since they have taught me to sit properly, and exercises for my neck, I feel so much better and the headaches have become far and few. If you’d like to know more of what I’m taking and the how to do the exercises, I’ll be glad to pass on the info.

  • RobertCan author
    4 years ago

    1uoi3ba, I’m sorry you experienced so many migraine days. My neurologist is against supplement use for treating migraines. Simply doesn’t believe there’s any science proving effectiveness. I’m intrigued by your use of PT. By all means please pass along the info of your chosen treatment path. I’m sure I’m not the only one here who would benefit from your story. Wishing you a pain-free day – robert

  • Millerk1971
    4 years ago

    I am so sorry you have had to deal with such frequent migraines. While mine aren’t as often, they tend to last a long time when they hit. I cannot get rid of one, or the postdrome phase that leaves me highly impaired. It takes me 2-3 weeks to recover from one migraine. It is a shame there isn’t more that can be done for us all. But it is good to have a place we can all share our experiences.

  • RobertCan author
    4 years ago

    Millerk1971, I know what you mean about the high impairment during postdrome. On the few days that I might not have a migraine, I’m still impaired by that wonderful migraine hangover. I do agree, its great to have a place to share our experiences. Thanks for sharing yours! Wishing you a pain-free day – robert

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