Realisation

I assumed I’d fallen asleep after the indomethacin had dispensed its much needed pain relief, but as memories began to appear through the early morning haze a feeling of excitement began to stir, as I recalled how effective my silent screams had been at controlling the pain.  At very worst, I knew I had found an effective pain therapy.

I was keen to try my pain relief again but was in no rush to do so for testing meant experiencing the full kick in the head that would suggest I needed it. I continued to medicate as normal.

A couple of days passed by. It was during this time I had a feeling.  A feeling that can be best described as believing you have all the numbers to a winning lottery ticket but not having checked the ticket yet to confirm.  Every hour that passed the longer my ticket went unclaimed the more convinced I became I’d hit the jackpot.

Strange and illogical as it seems I was growing impatient.  Why was I now effectively welcoming something I’d spent all my waking hours trying to avoid.

It would probably be some time before breakthrough pain occurred naturally.  So much so, I decided it was time to check my ticket.

It was early evening and I was due the next dose of indomethacin. I wondered, was it worth the suffering to prove something that was bound to happen eventually? I contemplated but knew I had to pursue this path.  I skipped the dose and went to bed in preparation for the encounter ahead.

It was 8pm and I was expectant of the opening salvo during the coming hour.

  • Pain always led by the dull ache associated with swollen glands.
  • Accompanied by the distracting pain of severe toothache.
  • A third volley being the dull pressure pain behind my right eye.
  • All culminating with the jabbing and stabbing pain of the ice pick headache.

The hours passed by, I waited and waited. The longer the passage of time the more reluctant I became to sleep. So much so that by 1am it was impossible to sleep. I didn’t care, for the first time since this nightmare began I was pain and medication free.

That was over 5 years ago, I’m still pain and medication free.

I would not like to claim I cured myself that night as there have been rare cases of remission documented for Hemicrania Continua. I do whole heartedly believe that my actions directly contributed to my own remission.

If I had simply listened to conventional wisdom and not acted upon my own instincts I know I would more than likely still be suffering the pain of Hemicrania Continua today.

The pain may return but for now I know I have gained an education and understanding that will allow me to compete once more should my worst nightmare ever come back to haunt me again.

Home…

11 Comments

  1. Richard
    Feb 19, 2017

    Dear Mark,
    Thank you for sharing your experience and cure for your HC. Today is the first day I’ve heard an accurate description and specific name for my headaches even though I’ve been going to doctors here in New York for over 16 yrs. Probably the most frustrating part of these headaches is the lack of any apparent cause. They started when I gave up drinking and other substances 18 years ago in my continued recovery. I’ve been clean & sober now 18.5 years but still have my headaches. I’m falling to a point of desperation in my life where staying sober does not seem worth it and wondering if alcohol is a better choice and could cure my headaches. Indomethacin did not really work for me. The combination of etodolac (another anti-inflammatory) and cyclobenzaprine, which I’ve been on for over 15 years would knock out the pain. Even with these meds there is always and underlying pain on the right side of my head and above my right eye. Unfortunately these anti-inflammatories are destroying my stomach and I can no longer take them. This is equal to the final blow at the end of a long war. Your method gives me some hope but I’ve learned through the years no to become overly optimistic only to be let down again.
    I think I understand how to do the Valsalva manoeuvre up until after you exhale. You said you exhale and then say the “hick” again? What do you do after that? I’m not sure I understand.
    Thank you for your time and efforts,
    Richard

    • mark
      Feb 19, 2017

      Hi Richard,

      The work “Hick” is referred to in the description provided at this website, http://navyflightmanuals.tpub.com/P-868/The-Anti-G-Straining-Maneuver-94.htm

      This is my original description which may help more.

      ******** Below are my original words for describing Valsalva ********
      Imagine you are constipated and trying to force a bowel movement (pass a water melon), it is the same pushing movement. As you strain and continue to push, you will feel pressure building in your head and face.
      The pushing required to give birth also results in the valsalva manoeuvre being performed.
      If you Google using these search terms “valsalva maneuver labour” or “valsalva manoeuvre constipation” you will find many descriptions.
      E.g. Purple pushing refers to holding the breath so long and with such force that the small capillaries in the cheeks and face burst. Purple pushing produces Valsalva’s Maneuver. Valsalva’s Maneuver occurs with prolonged breath-holding ~ 5 seconds whilst pushing.
      It is not a risk free action so I advise anyone to seek medical advice before attempting to perform it.

      Mark

  2. AJ
    Jul 28, 2013

    Mark,

    I’m a little unclear on your conclusion. Do you continue to take indomethacin or did the “maneuver” cure you?

    Thanks much,

    AJ

    • mark
      Jul 28, 2013

      AJ,

      I no longer take indomethacin, the Valsalva Manouvre that I did cured me.

      Mark

      • YZ83
        Nov 22, 2013

        Mark,

        How many times did you have to do the Valsalva Manouvre? Did it cure you for good or is there still chance of it coming back? I have been taking indomethacin for my HC for a year and had to recently increase my dosage to 3x daily because I had severe episodes again. Not liking the side effects,though.

        Thanks,

        Yvette

      • mark
        Nov 22, 2013

        Hi Yvette,

        On the night I describe on the Cure page, I did the Valsalva many many times, each time I did it the pain went away for longer and longer until I eventually fell asleep.

        I have not had an attack of HC since that night and have not had to take any medication and that is almost 3 years ago now.

        I can’t say if it may or may not return sometime in the future as there was a reason I got HC in the first place for reasons unknown. I do still have a supply of Indo that I take with me when travelling, just in case.

        Touch wood, I’m fairly confident it won’t return but if it does I’m hoping Valsalva will help me again.

        Mark

      • YZ83
        Nov 24, 2013

        Hi Mark,

        Thank you for the quick response. I’ve still been going through episodes since my increase in medicine this week (not as severe, thankfully). I notice when it gets extremely cold I tend to have pain. Glad to know you are doing well and have not had anymore attacks of HC.

        Yvette

  3. sas
    Feb 12, 2012

    Mark,

    I enjoyed and appreciated your personal history. As someone who has
    hemicrania, it was helpful hearing your experiences and it answered a
    lot of my questions.

    I wanted to ask you a couple of questions though.

    What was your typical dose of indomethacin, was it mostly 50mg 4x/day
    or something else?

    Also how long did you have the hemicrania for?

    How often would you get exacerbations (sever pain) from the hemicrania
    (i.e. how many times a month) and how long did they last?

    Also were you really in your 90’s when it was diagnosed,
    according to the DOB on the consultant letter?

    Thanks

    • mark
      Feb 12, 2012

      Hi Sas,

      I took 3 x 50mg of indomethacin at first but I used to suffer from breakthrough headaches (2-3/week) and so upped the dose to 4 x 50mg/day.

      If the word lucky can ever be used to describe someones experience of HC then that someone is me. From first to last headache my experience was just over 4 months.

      If I would have medicated with Indomethacin on time every time I doubt I would have had a reoccurrence of a headache. This is how effective for me this drug was at subduing the pain of HC. Unfortunately it is not a cure only a very effective treatment to the pain. I would have on average around 12 headaches per month when taking 3x50mg/day and may be 6 headaches month when taking 4x50mg/day of Indomethacin.

      Sorry for the confusion on my age, I blanked out certain personally identifying information from the consultant letter. I was 44 when I suffered from HC, I’m now 45. My DOB should have read 08/10/1966 (UK format).

      Mark

  4. amir
    Feb 9, 2012

    Hi Mark,

    Very well written article. The situation and expereince you have
    described on these pages are very similar to what I have had for the past
    almost 10 years.

    Could you please reiterate the steps you took to cure yourself without
    using any medication again? If you could provide more details in steps
    that would be great.

    I am also glad that your pain has gone and I hope one day mine will be
    gone too.

    Thanks,

    Amir

    • mark
      Feb 9, 2012

      Hi Amir,

      When I initially had the headaches it was a combination of many different
      types of pain including earache. In the past (before HC) when I had ear
      pain I knew that popping my ears could help relieve this (Scuba diving,
      taking off / landing in a plane), this is why I used to pop my ears
      (Valsalva).

      Popping my ears when I had the headache only provided me minimal (1-2 sec)
      pain relief.

      The breathing technique (Valsalva Manoeuvre) I describe on the Cure page I
      performed only on that one day, but I tried it many times. I noticed that
      there was significant pain relief when I tried it. The more I tried it the
      more the pain was relieved. I was very lucky that it worked for me, I
      believe it can work for others and this is my sole reason for creating the
      website.

      You can try the Valsalva manoeuvre at any time but I would only recommend
      when you are suffering from a headache and with the approval of you
      doctor/neurologist. This way you can see if it helps.

      I was quite aggressive, you can feel the pressure building in your
      head/face as if it a blood vessel may burst, but I was desperate at the
      time and it was working. The headaches never came back after this night.

      Thanks, good luck and let me know if my information helps?

      Mark

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