Possible Occipital Neuralgia and MS?

[anon07072023]

Hi Everyone,

I'm not for sure if occipital neuralgia is what I have....but sometimes when I bend my head a certain way, I feel like something has grabbed the back of my head with a lightning bolt/electrical shock.  It almost feels like I'm going to black out when it happens.  The sensation starts towards the upper part of my neck on my right side, and then fans out like a few fingers/hand into the back of my head on the same side. It's instantaneous and then after it happens, it goes away until the next time. It doesn't last, like a headache might.

Has anyone else experienced this and do you know if it might be related to my MS?

Oh, another question - when I was at my neuro this last Fri, I brought up how my ear will start to feel like it's burning and then turn bright red, and feel hot to the touch.  He asked if my neck is also stiff/tight. Well, of course I said that my neck muscles always feels stiff. He just wrote some notes.  Any ideas of what he might have been getting at?  He is ordering another c-spine MRI. I already know I have a lesion between C4-6.

Thanks,
Kelly

[ClevelandFan]

I've had MS for almost 35 years now and currently having a bout of occipital neuralgia.  My neuro has me on 1,200 mg of Neurontin.  It's helping a little because the pain is not too bad, but the occurrences are now nearly constant.  I had a bad episode with trigeminal neuralgia about 15 years ago.  The pain was so bad, I was eventually hospitalized for three days.  They had me on high doses of neurontin while the doctors considered surgical options.   Fortunately, the Neurontin finally worked and I was released.  No reoccurrence of that, but now the occipital has arrived.  I'm hopeful the Neurontin will again finally kick in.

Good luck.  -Louise

[anon07072023]

Well, nothing really came out of it. My neuro never talked to me about it again and he never said what he thought about it.

Sorry,
Kelly

[Sidesteps]

Bump

Kelly,

I have been doing a little research trying to figure out my vision issues (pain behind my eye, eye movement, etc.) and this came up as a possible cause.

What came out of this?

[COBOB]

Sounds like occipital neuralgia.  As far as the an ear turning red and feeling hot on one side, it is a common complaint of people with fibromyalgia and CFS.  I have no idea why, but it is a commonly reported symptom.

Bob