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You’re Probably Not Special

I say this with the utmost kindness — you’re probably not special. Being special in my case means I’m one of the fewer than 5% of people with intractable headaches. The odds are so in your favor that your headaches can be treated.

At the end of Nerve Stimulator Heartbreak, I wrote:

“Please don’t give up without exhausting your options. Once you think you’ve tried everything, ask about and research what other treatments or treatment combinations are available. You’ll be amazed by the possibilities.”

Headache specialist Dr. Christina Peterson highlighted that paragraph in her comments on the post and added:

“There really are so many options, and even if you think you have tried ‘everything,’ very few people really have. And we keep coming up with new stuff all the time.”

“Almost none of us are ‘curable,’ but very, very few of us are truly untreatable. Keep looking — you never know when something will work.”

I’m not defending my turf when I tell you that you aren’t special. I needed to get your attention to say this: Keep at it. Finding the right treatment for you can feel unbearably slow, but it’s nothing compared to spending your life in pain.

And think about this. Many doctors believe that the longer someone has headaches, the longer it will take to treat them. It has been likened to a car engine. At first the car starts just fine. Over time, the engine wears down and is no longer quick to turn over. Eventually the engine (or the pain control mechanism in your brain) stops turning on. When your brain’s mechanism gives out, your headaches become more frequent and less responsive to treatment.

All is not lost. Not even for me. Intractable does not mean untreatable; it means unruly or difficult (but not impossible) to treat.

6 Responses to You’re Probably Not Special

  1. Cyndi says:

    I think I am special too. But I suppose I am not. I really needed this today of all days, but how many times can I re–search the internet? the library, the bookstore…

    ********
    I’m sorry if you fall in the “special” category. It’s an awful feeling, both pain-wise and emotionally.

    I hope your day gets better. Take care.

    K

  2. Olivia says:

    Was starting to think that I was ‘special’ too. But I finally got an answer – I have idiopathic intercranial hypertension. At least now I know. Good luck to all other headache sufferers. Sometimes it seems it will never get better but you just have to push on and keep searching for answers.

  3. carolyn stolzenburg says:

    Hi Kerrie,
    I am currently in the middle of a migraine flare. 24/7 headache, 3-4 migraines per week, and unable to get off indomethacin which is causing other problems
    I appreciate this post about not giving up and remembering that there are things to try
    It is helping to cheer me up
    Your blog has been a huge source of support for me and I appreciate how often and how much I have benefited from it
    Many thanks to you
    @infiniteknot

    • Hi Carolyn, I’m sorry you’re in such a difficult spell right now. It’s an honor to hear that the blog is so helpful for you. These can be difficult words to hear, but please hang in there. You’re in my thoughts.

      Take care,
      Kerrie

  4. carolyn stolzenburg says:

    Proof of my current brain fog, what I really wanted to say is that I am convinced that since I have had chronic migraine for years upon years, the neuropathways that contribute to migraine are unfortunately entrenched and I don’t have much hope they can be undone
    Because of my age and decades of migraine, treating them seems creating a miracle that just isn’t going to happen
    I am convinced that once migraines go chronic it’s incredibly hard to set that back to episodic

    • Carolyn, I’m sorry hope is in short supply for you right now. It’s a demoralizing place to be. I used to have the same worries as you, but I talk to people every week who have recently experienced drastic improvements after decades of chronic migraine. This has happened with the CGRP drugs and also with medical devices, like Spring TMS, Cefaly, and gammaCore (which available in several countries and is pending FDA-approval). What’s most striking about devices is that many who use them for acute treatment find that the devices are also preventing future attacks and/or reducing attack severity dramatically. It can take months for this benefit to build, but it’s definitely present. Devices don’t get much attention and are often not prescribed because they are expensive. But I believe we’re at the very start of a wave of treatments that restore substantial quality of life for people with chronic migraine. I have recently learned about the intricacies of getting insurance coverage for medical treatments and know that drug and device companies have large teams working on this very issue. I have hope, not just for myself, but for all of us.

      Take care,
      Kerrie

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