Mark

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My name is Mark and my only hope is that someone, somewhere will benefit from my rather unique experience… 6 and counting :-)

What I share here is an intimate story of a relationship that held sway over my every waking hour. A relationship that ended as abruptly as it started and one where pain was a lonely companion.  The pages portray an accurate account of my experience, what I learned along the way and how I ultimately overcame “the pain” of Hemicrania Continua.

My focus is on Hemicrania Continua, the headache with which I was finally diagnosed.  However, I would not want to preclude anyone from reading this information especially those who may suffer from a similar type of headache with similar symptoms.  

If there is one thing I have learned along the way, exposure to other people’s stories often leads to new ideas and direction.

I wish you the best of luck.

Mark

4 Comments

  1. myifrah
    Feb 23, 2017

    Hello Mark,
    I must first thank you for care, time and effort in putting this blog together and maintaining it all these years. Your story, your open explanations and your clarity are all so brilliant. Thank you!!
    My story is not about me, it’s about my wife. She developed migraine headaches after pregnancy, usually brought-on by a reaction from foods (artificial sweeteners, caffeine, etc) or bright flashing lights. One day in September 2016 she began getting all the stouts you described. The stabbing pain that shot through her right side of her head radiating to her right eye and at bad times even to her tooth. She took doses of strong ibuprofen and Tylenol every 4 hours and it wasn’t really doing much. Her worst bout of pain brought us to the ER to rule our stroke or to help us get this uncontrollable “migraine” under control. Skipping ahead, several other E.R and urgent care visits later, little to no quality of life and visits with 3 neurologists later we were at square one. We finally met a brilliant Neurologist who listened to all her details, carefully noting which medications and ER treatments helped a bit and which did nothing and he gave her the H.C. diagnosis. One week on Indomethacin and she was all better. Amazing.
    She is now on month almost 4 months on a lower dosage of Indomethacin (once a day and not twice) but she is fearful of that horrible pain returning should she stop.
    I wanted to share our plight with you and your readers and thank you again for this amazing platform. I also wanted your feedback, which I value, about whether you think she should stop taking indomethacin so that the headaches return and then she can attempt the Valsalva manoeuvre that seemed to cure you. Also, you had mentioned the technique of closing your mouth and noise and “decompressing” the ENT much like scuba divers do… is that process in parallel to the Valsalva maneuver? Could you clarify a little more on the two procedures please?
    Thank you so so much!!
    Best,
    Michael

    • mark
      Feb 24, 2017

      Hi Michael,

      Thanks for your detailed email. I am happy that your wife has a diagnosis and that the pain is being controlled.

      I do not and cannot recommend your wife stops taking the prescribed medicine, only a doctor can do that.

      Holding the nose whilst breathing out, (decompressing) is a mild form of the Valsalva. This provided the ‘mild, fleeting’ relief I described. It is not done in parallel.

      Best of luck to you and your wife.

      Mark

  2. Judy
    Nov 2, 2016

    I can not believe someone else experience the same pain I have for years. Your description of what you go through while having a headache is short of amazing! As we speak I have been having the same headache since October 9, 2016, it’s now November 2nd. I take Indomethacin, and for the most part it really does work.

    • mark
      Nov 2, 2016

      Thanks for your comments Judy, I wish you well and hope you can find a more permanent solution to your Pain.

      Mark

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