Occipital Neuralgia

@foxylloyd @irr4et
Oh my gosh. I’m am so sorry to hear about your pain and frustration.
I too have Occipital Neuralgia, Fibromyalgia and peripheral neuropathy.
Until I realized what caused the ON I had awful symptoms including temporary loss of vision in one eye.
For me, the cause was a new bed pillow. It was too high and caused my neck and skull to be misaligned.
That was the only reason I was in pain.
I bought a cervical pillow on Amazon and started to feel better. I also went for physical therapy. They showed me how to stretch and loosen my neck muscles. Everything was quite easy to do and it made me feel better.
That was almost a year ago. I still have times when I have a bit of pain, but if I do some of the exercises and it helps.

The only medications I take for all of this is the Tylenol, and Zoloft. I can’t tolerate painkillers, Lyrica made me way off balance, and sleepy.

I take a host of other medications for other problems but that’s another story!

Blessings on you both as you continue your journey.

I have had many accidents and surgeries since I was young so it’s hard to say exactly what caused my neuropathy but it started coming on about 30 years ago and it started painfully in my feet. It slowly went up my spine and started affecting my legs. I started having trouble walking and started using a wheelchair off and on and the pain pills started getting stronger and stronger until they weren’t helping much anymore. I had more than one accidental overdose. I’m now 67 years old and am opioid intolerant so they don’t help me anymore. I’m now in a nursing home and bedridden in excruciating pain with no one beside me but my sister who has helped me through everything. Thank you for answering me and I hope everything goes well for you.

No I haven’t tried anything like that.

Do u mind if I ask you exactly which Cervical pillow u purchased? I looked on Amazon and there were many to choose from. Thank you!

I have been taking Cymbalta for a long time and it doesn’t seem to make me feel any different.

Nerve block is an easy procedure, does not hurt , takes only a few minutes. I get instant relief of my pain, a godsend. However mine only lasts for a few weeks then its back full force. I get them about 4 -5 months. My neurologist won't do sooner as says can make them not even last that long or at all. So I enjoy being pain free even if only a few weeks at a time. But having said that, everyone reacts differently with them. Good luck
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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.

@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.

Thanks so much for getting back to me. Your PT suggestion is a good one. I've been many times and I continue to practice the specific exercises they'e given me. In the past I thought they were useful, but now I'm not so sure. I, too, am negatively affected by a too high pillow. I feel the result quite quickly and change to a softer, lower one. I think there may be some better way to sleep, but I have yet to find it. One of the most annoying things is that the gentle blowing of the wind can set off the pain. More than once I've set out on a walk with no pain, only to get caught in a breeze and come home with searing pain. I've been with Kaiser for the past 12 years, and I've been satisfied with the care I've received - until now. I'm very disappointed with their lack of response to my severe pain, so I'm meeting with a Medicare ins. person today to discuss other options. I'm thinking a new neurologist might have a different approach, and if not, then I've got a wider pool of neurosurgeons if I choose to have an occipital nerve decompression procedure in the future. Thanks again for your response.