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Does this sound like occipital neuralgia?

Started by bluebird50 on 01/28/2013 12:35am

Hi everyone

For several years I have experienced this tension/soreness that occurs only on one side at a time and extends from the base of my neck to about half-way up the top of my head. The tension/soreness will occur on one side, stay with me for a few weeks (or longer) and then dissappear for a month or two, only to return again but on the opposite side. During these episodes I am able to touch my chin to my chest and move my head around freely but when I turn my head left or right it hurts a little more. I have also noticed that these episodes occur more during or after periods of intense stress. Sometimes there is a very mild headache feeling involved along with what feels like pressure and brain fog.

I was in an accident some years ago and was injured but even worse, I have had Tourette's synndrome most of my life and have these head-jerking tics which used to be back and forth (as if nodding "yes") but in the last 6 months, they have morphed into a head-jerking tic that causes me to jerk my head from side-to-side (as if nodding "no"). Sometimes they can get pretty severe.

I also want to share that I have had a number of MRI's and CT scans with and w/out contrast over the years and was diagnosed with cervical arthritis with C4/C5 affected along with a bone spur (osteophyte). I don't know what else the report said but I think there is some nerve impingement and other things going on as well. I can also remember back years ago when I had several off-and-on episodes where it felt like my entire neck was a crumbling, concrete pillar that was falling apart with rusting rebar sticking out. I mean, it just felt like my whole neck was shattered and there was lots of cracking, crunching, grating, grinding and pain. Like the episodes I described at the beginning, these episodes came and went.

Often when I turn my head for long periods of time and then turn it back again or move it too quickly, I can hear/feel a "popping/cracking" and it can be pretty painful. Also, when I crane my neck for long periods, I start to feel kind of shaky/weird and have various sensations (like "vibrating" in my neck). Also, I have awaken a few times with the top of my scalp completely numb or it felt very prickly (like a thousand little bee stings). Perhaps the most scary time was when I woke up and for most of the day I was completely unable to use my right hand/arm (it was all but dead). Finally, I occassionally get the weird throat stuff (lumpy, tight feeling, random mildly sharp pains on one side, etc) but I also suffer from GAD/anxiety and Panic Disorder so perhaps that is at least partly the cause.

I never put two and two together until I recently typed "recurring occipital nerve pain" into a search engine and came upon the term "occipital neuralgia" which perfectly describes what I have been experiencing and what might be causing it all these years and I was wondering if the description of my circumstances along with any of the symptoms I have described here sound familar to any of you.

Thanks so much for any input.

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1 Response


I suffer with everything you do. My neck pain is awful. I was on pain meds for 2 yrs and got very very sick. I've been off off them for almost 2 months now and the pain is horrible. NEVER let them do a Occipital nerve block. I can take pain, I gave birth to a over 9lb baby, so trust me I knowwwww pain. That Occipital nerve block was awful. I cannot have injections, but I have been suffering with awful migraines since 5 months after my C5/C6 disc fusion. I was wondering if removing the plate will make a difference? Lets talk about it and see what we can come up with.