Saturday, January 9, 2010

No More Pain Spikes

Working Towards Normalcy

Last year I spent in desperate pursuit of getting an occipital stimulator installed to mitigate my headache pain. The degree of daily nonstop pain I was in was more than I could handle, and medication did little to assist control. The diagnosis I have, hemicrania continua, only responds well to one medication [indomethacin] and that had started to ruin my pancreas so I was being forced to discontinue it with no real replacement for pain relief. By a miracle of some sort I got accepted into a trial study of occipital stimulation for headache control, and to my amazement the stimulator did what it was supposed - controlled my pain! Not 100% but close enough at this point I'm considering the daily pain problem fixed.

What I am left with are spikes of extreme pain - they come in bunches, piercing through my head on the left side, burning their way back to my hind brain where they disappear as quickly as they come. All I can do is bear down and hunker through the outburst. I don't think any medication I take will stop these, as my headache specialist, Doc Optimist, said that indomethacin is the medication of choice to control these "spikes" also.

My hope for this next year is to achieve pain control: for the daily headache, for the pain spikes, and for my now chronic pancreatitis. Last year The Headache did not respond well to pain medication, the only relief I received with pain medication was when I was given enough in an emergency room to send me to the sweet land of oblivion. With the main part of The Headache now being gently tingled out of my skull by my electronic headache zapper, I hope that the pain medication I am taking for the pancreas problem will also take care of The Spikes.

I have only been on a pain medication regimen for a handful of days, but I am getting over the sedating effects, and have noticed a decrease not only of The Belly pain but have only had one Spike episode in this time. It is too soon for me to know if this is just fortuitous circumstance or a real benefit of the medication. My worst fear is that the medication (time release tramadol and vicodin) will create the dreaded Monster: Medication Overuse Headache.

My PCP assures me that the level of medication I am taking verses the level of pain I am experiencing will not lead to addiction. He feels that even with the new regimen I am undermedicated. I prefer to take baby steps with new medication - my roller coaster experience the first year The Headache manifested has made me a cautious consumer. I only want to improve my health situation, not worsen it.

With better pain control I plan to increase my activity levels. I have let contacts with friends slide the last couple of years, as it was a struggle just trying to keep working. I miss my friends. Email and phone calls are great, but they are not a substitute for human to human interaction. I need to start getting out regardless of how I feel, but getting the energy to do so will be hard. Thank goodness my family is here and they don't care if I'm a limp dishrag some days!

Looking forward to a year full of surprises. I could not have predicted how well 2009 turned out, so I am hoping for an even better 2010.


  1. That's good to know - about the breakthrough pain with ONS - I'm seriously considering it for 2010. My doc will no longer prescribe ANY pain meds for me, and I'm destroying my liver by taking tylenol and advil by the handful in desperation. When all the yoga, meditation and positive thinking still doesn't do it - I *have* to take something, but I don't think that this much otc medication is good for me. So - I'm looking into Occipital Nerve Stimulation. I'll keep you posted...

    In the meantime, I hope your year is a better one...

  2. Sue: sorry to hear about the problem with pain meds, for me they didn't work anyway even opoids/narcotics. But just having pain with no remedy is terrible!

    Please be careful about the organ damage as you know both of those meds are very hard on the body. I hung on too long to the indomethacin and now my pancreas won't ever recover...the stimulator was a godsend. They don't guarantee complete pain relief with a stimulator but mine is so much better. has a link to a description of the onstim surgery and a list of US surgeons, I don't know if she has any Canadian ones. I also belong to a group of gals on facebook that have either gotten stimulators or are looking into it, many still experience breakthrough pain also - if you have a facebook id just email me and I can send you the group. this cluster headache link has pictures of the surgery I think done in Switzerland

    Another hemicrania continua sufferer I know is going to see about getting one. He is not sure if he wants one, as surgery is not appealing to him, but he is out of medication options also.

    Headache pain stinks.