For all those that suffer from Hemicrania Continua (HC) or a similar condition there is hope.
My name is Mark, a patient that was offered no cure and so little hope.
I am not a doctor. This was my life then. Please seek medical advice if you need it.
Some Success Stories
I have suffered from an almost constant headache on the left side of the top of my skull, nose and eye for over 20 years. I have been diagnosed at different times with every type of headache known to man. I have taken a zillion different medications and preventatives, none of which worked completely (or at all).
Very recently my doctor gave me indomethacin to take before running, as running often triggered much worse pain than normal life, and I am training for a half-marathon. She said it probably wouldn’t help much, so I didn’t even touch it until three days ago when I got a strong headache and had run out of triptans. It worked so, so much better than the latest triptan I had been taking, with none of the horrid side effects (chest tightening, burning sensation in scalp, etc.). The triptans only ever took the edge off and left me shaky and exhausted.
Anyway, after my last three painless days, I woke up this morning with the familiar pain. I started to do a web search about indomethacin to see whether I could take it again today and I stumbled across your page first in my search. I read your story and everything fell into place.
I am sitting here in disbelief and tears. I truly believe I finally have the proper diagnosis after all this time. I tried your Valsalva maneuver and my clumsy attempts gave me minutes of relief at a time! Five whole minutes once! Now my indomethacin just kicked in and my pain is gone again completely.
I just want to thank you from the bottom of my heart for putting your story out there. For the first time in ages, I have hope that I can finally conquer or at least control these headaches. I cannot tell you how much time and energy I spend just pushing myself through pain and misery to make life good for my children and to live a normal life. I am sitting here in wonder that there is absolutely NO PAIN in my head right now and that I might actually get to experience this wonderful feeling on a regular basis.
Even if this isn’t the exact answer for me, I have made more progress in the last hour than I have in the last five years!
OMG……is it possible you have given me a new lease on life? I have read your post and I wanted to cry out….YES…..you understand…..unlike the 5 Doctor’s that I have seen. Internist, Sinus specialist, Neurologist (2), and Chiropractor……….! I have had head and eye pain for the past 2 years….all medications that were prescribed would elevate my Blood Pressure, so pain medication was not an option. Some days the pain was so bad I would take the medication anyway…didn’t care if I lived or died just wanted some relief.
So two days ago I tried the Valsalva Maneuver and found relief. I was so stunned that it worked I just couldn’t get excited. But after several rounds of using your cure I have been able to control the pain for the last two days. I am so very, very grateful that you shared your story, I can’t thank you enough. Hugs and more hugs to you….from a 71 year old Grandma!
Just want to say thank you for sharing your experience.
I was desperate to find a cure for my headache as I know the symptoms are not that of a ordinary headache as describe by my doctor. The pain reliever that they gave didn’t help, the pain won’t go away. so I decided to research my condition and realized that I have HC. I was suffering 24X7 for two months and I could not imagine myself to be dependent on medication at 32. I tried the Valsalva manoeuvre after reading your post and guess what? The pain had stopped!
I am so blessed that it also worked for me. You are heaven sent.
Thank you so much and I hope that more people who are also suffering will read this post and help them overcome the pain.
Kay and Vic have added additional information in the comments section below.
For those that suffer from HC but are unable to take / tolerate Indomethacin, please refer to Eric’s post in the comments section for a potential alternative.
If you have questions please ask via the comments section available on each page so all can benefit from the information.
HC is still a little known and even less understood condition. The more we share the more we learn.
Someday, Someone, Somewhere, Somehow…. 4 and counting :-)