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Hi Sharing
I am also 76. I began having O.N. in 2018. The episodes last 4-6 wks with 9 out of 10 pain. Then I have 2-3 months with no pain. I've tried so many treatments (including Botox), but I'm particularly sensitive to chemicals, making anything useful (like gabapentin or Lyrica) totally ineffective for me. I'm unable to function with this pain, and I'm wondering whether what I'm experiencing is different from the norm - or whether I'm just a wimp when it comes to pain (I also have fibromyalgia). I have constant Level 9, searing, burning pain up the back of my head along with electric shocks that occur often as 45 per hour. When they occur, my breath catches, and my mind goes blank - totally limiting my ability to function. I'm wondering how this compares to what other people with ON experience. I'm fortunate in that morphine sulfate controls the pain for approx. 6 hr. at a time. Without it I don't think I'd still be on this earth.
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@authorchris
I had daily issues with occipital neuralgia for 2 years about 15-20 years ago in my late 40s. I would have terrible lightning bolts of searing pain shoot across the top of my head, slightly left of center. This was a long time ago and I didn't take notes so this is my old memory of it. I remember it happening frequently throughout the day. If it had been non-stop, I would not have been able to function it was such severe pain, but it was like a single bolt every so often. It stopped me in my boots when it happened. After two years, I was convinced I must have a brain tumor and sought out a neurologist who told me it was ON and generally originates in the neck. I did have a lot of neck issues (still do) including from a previous whiplash and other causes. It seems like he may have given me some exercises or something for my neck. I do know that it stopped not too long after I saw him so I must have done something he said that worked. I still have the occasional shooting pain of ON, but it's so seldom that it's not a concern anymore. I can't take pain meds either. Do you have any neck issues? If so, I wonder if physical therapy to resolve those may be of any help. I haven't read up on ON since then so I'm not sure what the current thinking is on it or what else may trigger it, but what he said made sense to me at the time. Hope you can find some relief soon.
I just scrolled up a bit and see some mention of bed pillows. I have never found the perfect pillow for my neck and they are always an issue. I do know that, for me, one that's too high is worse than one that is too low. I'm like Goldilocks with pillows -- too high, too low, too hard, too soft.