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NumbskullNNumbskull Posts: 1,526
I know I've been called this a few times throughout my life, lol, but the past couple of years, it's actually been literally true! Does anyone else get that, where your skull goes numb?

For me, it's only on the right side, I know I do have some sort of nerve damage on that side, I also have Horner's Syndrome which causes my right eye to droop. I also don't sweat on the right side of my head and neck, and if I'm doing anything physical, the left side flushes red, sweats abnormally, but the right side is like nothing is wrong at all. My hubby calls me his little coffee creamer (because I'm half and half, lol)

That's also the side that I get what my doctor called "ice-pick headaches". It feels like someone is driving a spike through my skull into my brain, and sometimes behind my eye. I get several of these "spikes", always in the same spots, which last for a few seconds at a time, it brings me to my knees.

Does anyone else experience anything like any of this?
APROUD CANADIANveteranButNOTa doctor, my thoughts are my own


  • I experienced pretty close to the same exact thing, minus the half/half issue. I had a long time issue with occipital neuralgia with the greater and lessor occipital nerves on one side. The shooting pain didn't stop until the nerves were blocked (then only temp) and eventually with a C2 ganglionectomy with a C1 decompression. Now that side is permanently numb and the pain is gone. I do get phantom pain from time to time, but it is way better than the normal pain was. I also get "itching" and when I go to scratch it, of course I can't feel it, so I feel like an idiot for even trying.

    The occipital neuralgia was easy to diagnose. The neurologist did a simple nerve block and I would get great relief as long as the anesthetic was active. We tried RFA, which worked on the lessor occipital, but enraged the greater occipital.

    It was initially controlled for 10 years with Carbamazepine and Neurontin.

  • Thanks C. I searched occipital neuralgia, and everything I read fits me to a "T". I sympathize with trying to scratch a numb spot, it's so annoying, isn't it?
    You did actually explain the ganglionectomy to me once before, I have to go back and re-read your pm. I have had the nerve blocks as well at the base of my skull, the first time it didn't work, but I already had a full blown headache, it was at the point that it hurt from even the slightest pressure on my head. The 2nd was just last week, and for a couple of days, my headache was better. I've had a continuous headache since before my surgery in Apr 09, not a day it hasn't been there, but the spike pain, numbness and intensity comes and goes. Maybe I will ask my pm about the procedure, but I don't think I have that much of an issue with it to go to that extreme. I remember you saying you had quite the time trying to rebuild your muscles after it.

    Thanks for your reply, it's nice to know I'm not the only one who has these weird symptoms (well, except for maybe the half'n half face...) That's the weirdest thing, because it's exactly half, you can see the line down the middle of my forehead, nose, chin and neck, and it really doesn't take much for it to happen.
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • If anyone asked me if I recommend a ganglionectomy, the answer is no and heck no! There's so much that can be done to curb the neuralgia, including an Occipital Nerve Stimulator. Not too mention a vascular study in the head and neck which of course wasn't done until all heck broke loose in surgery. I never regained either of the muscles I lost, they are gone completely and only a nerve and muscle graft would possibly bring back some sort of balance to my neck. At this point I'm not willing to go that route, especially knowing I could wind up worse than I am now since they would have to go in under my jaw and behind my ear.

    So the fallout or collateral damage is too great. Throw in nerve damage, hearing loss and vestibular problems and you have it all in a nutshell. I'm glad I had it done since they discovered an unknown vascular problem, but without my SCS I would be incapable of living life. I was offered an occipital nerve stimulator just a couple days before the surgery, but I turned it down. I saw the surgery as a permanent solution. Hindsight is 20/20 for certain.

    The problem I encountered with the occipital neuralgia, is that it would also trigger migraines. Two separate types of headache, but one easily triggered by the other. Once the occipital neuralgia was better controlled, so were the migraines. I was able to have more and more days with no headache after 2 years of constant headache.

    Actually I find that when I try to scratch the non-existent itch quite comical. It cracks me up every time. Especially when like an idiot I try repeatedly.

    Hope you are able to get something figured out! Are you taking any of the anti-seizure type of nerve pain medications? They were like a tall glass of ice water on a hot sweltering day in the middle of the desert. Cooled things right off for so many years!

  • When I was taking Lyrica I felt that numbness and sometimes crackling in my head area. Of course I was swollen all over from it and had gained 45lbs very quickly. I took water pills that helped. Don't know if it's the same thing though.. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • I do take neurontin, for over a year now, and ativan as needed for anxiety. The meds haven't changed anything in this area. I have noticed though, that the spikey headaches did subside when not working, and have just came back when I went back the other week. The spasms in my traps did lessen while off work as well, so I imagine that has something to do with it. I do get tension headaches with a vengeance, that wrap around the top on that side of my head, then migraines, and these ice-pick headaches. You're right, the tension headache (which is the kind that I've had continuously) does trigger one of the other two types when it gets worse. I've had all 3 at once quite a few times, not fun. Thanks, C, for reminding me of your "plight" with the surgery, reminded me of why, when you told me about it before, I said there'd be no way in that fiery hot place I'd ever have that done!

    Charry, that's a different side effect from the lyrica! Glad it went away for you, and hopefully was just from the med!

    btw, we were joking about me being a "numbskull" in chat last night, so Tammy changed my name for me (from smiley735) If we can't laugh at ourselves, well, then laugh at the next guy beside you. No, just kidding about that, but we do need to keep a sense of humour, don't we? I'm sure some people here would agree with the change anyways =P~ lol
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • Kelly I have Horner's with all the same symptoms. I've never thought of it as half and half but that is a great description.

    Horner's so so rare that I haven't been able to find a doctor who understands it. I've been seeing a neuro-opthomalogist who seems to feel that it shouldn't cause any problems. When I describe the blurred vision when I read for more than a few minutes, the headaches and the pressure around my eye I can see he doesn't believe me.

    His latest answer is that the blurred vision is because the nerve isn't working my eye doesn't blink enough to produce enough tears. So my eye dries out. Now I have to put in eye drops constantly all day and PM drops at night to try to keep the eye hydrated. This is a real pain in the butt and so far I don't see a difference.

    I'm curious -- how did you get your Horners? Mine came from surgery when they pinched the nerve between T1 and T2 as they pried them open to work.
  • Oh wow, Kris!!! Mine came from surgery as well, the NS who is one of the best for foraminotomies felt so bad, he'd never had a patient before who developed it. He had no idea where or what it was from during surgery, but I woke up in the recovery room with it. I had cervical surgery. My eye was so droopy it was almost shut, and my pupil was a little pin-hole. So, he sent me to see the head neurologist in the hospital, who really didn't have that much to say about it, just that it would go away in time. That was over a year and a half ago. The droopiness is better, only noticeable now if I'm tired or in a lot of pain.

    I so sympathize with the blurry vision from reading. I was doing distance ed to earn a diploma, and had to stop, because reading for any length of time causes the blurriness and headaches as well.

    Do you also not sweat on that side? It's just the weirdest thing, to have my hair dripping wet on one side, and completely dry on the other. It literally is like my head is sliced in half, the redness does stop half-way across my face. Also, did they say if the headaches are a result of the Horner's? That's something that any dr I've seen could not (or would not) answer either way...
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • I like what "C" has shared and Kris, too.

    I don't have much to offer, other than this sometimes happens to me.

    Love your new name... just wish it wasn't literally true!

  • i love you no matter what your name is!!! Jenny :)
  • awwww, thanks, right back at ya sweety!!!
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
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