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Occipital Neuralgia

SportoSSporto Posts: 12
edited 06/11/2012 - 8:58 AM in Neck Pain: Cervical
Anyone know how to deal with this conditon?


  • I hope you're seeing a Neurologist about this condition. I have neck pain and sciatica not the back of head but in my arm and my Dr. put me on Lyrica and I also take Cymbalta for leg sciatica but sure it helps overall.

    Have you had a had a head and neck MRI? Welcome to Spine Health and take care. 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
  • ON is a terrible affliction to deal with. I began suffering from it in 1998 and was finally diagnosed and started on a good treatment program in 2000. As Charry mentioned a neurologist is probably the best type of specialist to see for this. It was a neurologist who diagnosed me with ON and began treating it successfully for many many years.

    Basically I used a variety of anti-seizure meds to calm it and for many years that worked very well with nearly 100% control.

    I was initially sent to physical therapy where they did cervical traction and that resulted badly since the pads for the traction device rested on the occipital nerve and caused further damage.

    Nerve blocks were great for temporary relief and eventually I progressed to several years of narcotic therapy. It then got to the point where narcotics did nothing and I then underwent a C2 Ganglionectomy. Not a fun surgery and a nasty recovery.

    Good luck in your pursuit of relief. Keep us posted.


  • Did the C2 ganglionectomy solve the pain?

  • The C2 Ganglionectomy thankfully solved the ON pain but the consequences of the surgery have been debated as to whether it was worth it or not. Since I am the one who suffered, I feel it was worth every bit, but I also wonder how things would feel had everything gone right instead of as it did.

    I suffered a stroke during surgery and denervation to two major muscles in my neck that caused them to atrophy to nothing. I have a very asymmetrical neck now and it also effected the muscles in my shoulders causing muscle atrophy there as well. Of course some of that can be attributed to the other bad discs in my neck, but we will never know for certain.

    To fix the pain caused by the imbalance and bad discs, an SCS was implanted. It does wonders helping that pain and also helps the cervical dystonia that resulted from the denervation of the neck muscles.

    I had nerve damage to the eighth cranial nerve due to the stroke and that caused nystagmus, balance problems and hearing loss. I spent months in special PT learning to walk and balance again and to steady my eyes.

    I fight muscle spasticity daily and will always have to take something to help with that and fortunately now I am on a 3 month medication rotation so that I don't get used to the muscle relaxant and let it become ineffective.

    I'm probably forgetting something but it doesn't really matter. If faced with knowing the consequences prior to the surgery, I would most likely have tried an occipital neurostimulator first, but that's water under the bridge and no one could have predicted the outcome I had.

    I'm glad I had it done because the ON was debilitating and now I am able to work and function well once again. I honestly can't say that I'd recommend it or not to someone else. It is such a personal decision on a surgery that isn't done by very many surgeons.

    Hope that helps.


  • Wow, you have been through the mill. And yet you are still hear encouraging others and helping to inform people. On behalf of all spineys, thank you. >:D< >:D< >:D<

    I am interested in your muscle spasticity. I am also suffering with muscle spasticity. Mostly in my legs and feet, but it is increasing and now when in bed in the early morning, I get involuntary stiffening spasms around my abdomen which cause my back to arch right up to my neck, and my arms are starting to be affected too. I also get these spasms in my legs and abdomen if I stand up after sitting for a while (getting to be less time). I wonder if this will go away, or if I will always have it. Do you know? I am also finding that where my right foot particularly, turns inwards during the spasms with my big toe sticking up, in a relaxed position my foot is staying in an inturned position.

    I would really value your opinion and comments on this. :-)

  • The muscle spasticity is very difficult to deal with and I have learned to do many things to counter it. I too get spasms in my legs and feet and have just attributed them to the 7 lumbar surgeries I've had. These spasms are easily brought on by movement, body position and stretching to relieve tension and stiffness. I have just learned to wait them out some how.

    My shoulder and neck spasticity is the real tail kicker and I could really do without them! The meds help, the SCS helps (even though it's a non-published side effect) and daily soaks in the hot tub helps. I have to stay warm and not allow myself to get too chilled.

    I also take magnesium oxide which seems to help and make it a point to stay as active as I can so that other muscles learn to compensate for the ones that aren't happy.

    Early on one neurologist tested me for Stiff man's Syndrome but thankfully my blood test came back negative. I figured it would since from what I read that usually presents in the lower extremities first and I presented in the upper extremities first.

    I don't know if any of this will ever go away, but I do know that I have learned to manage it better. I have learned to reposition myself when these start and I can abort many of them before they get out of whack. I've also had trigger point injections in my shoulders to break up the spasticity that work for several months.

    Don't know if any of this helps. Let me know if you have any more questions.

  • I find that this muscle spasticity is worrying because I don't know what is causing it.
    I asked one of my neurosurgeons what is causing it and he said it could be anything from my brain right down to the base of my spine. My husband asked if there were any tests that could locate what is causing it and he said, no not really.

    He didn't seem to be particularly bothered about it. I just wish that someone would explain what is going on, and if it will go.

    The muscle spasms seem to be increasing; they occur more often, last longer and happen more strongly and in more parts of the body than they used to.
    Now my right foot is starting to turn inwards, even in a relaxed state, I wonder if it will continue and if it will make walking difficult in the future. If I get it when I am standing up (especially when I first stand up on getting out of bed), it causes me to bend over slightly and the compression around my chest expels air causing me to make a slight noise. Do you get that?

    I find that just before I get the spasming, I feel a sort of 'feeling' so I know that it is going to happen. (Not quite a tingle, not quite a warm feeling - I can't describe it.) Quite often my husband causing the bed to move as he gets up, is enough to set one off. I do think they can be set off my even a very slight movement.

    My pain doctor did say that he may refer me to a neurologist as we needed to rule out MS and that there were some other very rare conditions that could cause my symptoms. I wonder if Stiff Man's Syndrome was one of them. My next appointment with him isn't until March 2012.

    It is almost reassuring to hear of someone else who gets it. At least I am not a complete freak! (Sorry C, but it has felt that I was the only person who had this.)

    Did a doctor ever tell you what is causing it?

    I can't believe that no-one seems to be dealing with it. Something is definately not right!

  • Jelly, I think there are more on here dealing with spasticity than you realize. I too have have the severe hard spasms in my legs, and even my fingers will spasm and get "locked." My feet turn inward, moreso at times, and my toes will spread and/or pull downward in spasms. When a full hard neck spasm hits it pulls my head to the side. I almost always have spasming going on in my shoulders and neck muscles. It is more than I can bare sometimes, and I end up staying in bed a lot.

    The continual neck/shoulder spasming is what kicks my butt. The other ones I just ride out until they ease off, although sometimes I yell out from the pain. Like C, I get trigger point injections to help with the shoulder stuff, but this only helps me for a short time, and my doctor won't repeat them for 2 months. I would love to have trigger points every week!

    I hope you can find out what is causing your spasming. Mine is supposedly from cord damage, but who knows.
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!

  • Interesting that you have been told that your spasticity is due to cord damage. I suppose that is why it doesn't neccessarily go after surgery gets the pressure off the cord. Did you have any tests to reach that conclusion, or was it just the doctor's opinion?

    Also interesting that all three of us have problems in our necks. I wonder if there is any parallel in the levels of our problems. I have cord compression at C3/4 and C4/5 but also with spondylosis throughout all the other levels of my neck. On an MRI it looks to my untrained eye that there are 4 discs compressing on the cord, but I am told that it is C3/4 and C4/5 that they are concerned about.

    I also find occassionally that if I grip something for any length of time, that I find it hard to release my fingers.

    Thanks for coming and sharing your symptoms.
  • The very first time I saw my neurosurgeon, he demonstrated to me how my lower back was causing the muscle spasms in my legs. He literally made my legs spasm right there in the exam room. I did get relief from some of that with surgery and over time I have noted that when I irritate my lower back, the leg spasms are the worst.

    Like Cindy described, my head would be twisted around to one side due to the cervical dystonia pulling things one way. When my SCS is switched off, within less than a minute, my head started twisting. So thankfully I get extra help from my SCS.

    Hey I've been called worse things than a freak. At least here, I'm in good company! And Cindy is correct, there are many others here that suffer with spsticity problems.

  • I would never have thought that problems in the lumbar spine could cause spasming in your neck - the legs yes, but not in your neck. Do you think that is also coming from your lumbar spine?

    How did your neurosurgeon demonstrate that the lower back was causing the muscle spasms in your legs?
    My spasms have arrived since my lumbar fusion. I get them from my feet, through my legs right up through my back and front up to my neck. Now my arms are starting to be affected too.

    I did tell my ortho surgeon about them at my 12 month follow up after my lumbar fusion. He didn't want to talk about them and said that he didn't know what was causing them but that it definately wasn't anything to do with my lumbar spine. At that time, I was only getting them in my legs and feet.

    I don't get any twisting in my neck, so I feel fortunate.

    We can be freaks together!! Lol!

    I am going to start a thread about spasticity to see if that will draw out other sufferers from the woodwork!
    Sorry sporto that we have hijacked your thread that was originally about Occipital Neuralgia.

  • Hmm you got me there, I didn't think I referenced that my lower back issues cause my neck spasms. The neck and shoulder issues are directly related to the problem in my neck not my lower back. Sorry if I confused you somehow.

    When I first saw the neurosurgeon, he would move my legs in a specific manner and tell me ahead of time that he was going to demonstrate the problems. I figured he was talking about more pain, but instead he was triggering the muscle spasms.

    Many neurosurgeons don't like to treat muscle spasms for very long post op. They have a tendency to like prescribing Valium for them and of course most docs don't like folks being on Valium for very long.

    Chronic spasms and spasticity are usually related to nerve damage which then falls under the purview of an neurologist or a neuromuscular specialist. Last one I went to wanted to do some fancy muscle and nerve grafting through my jaw, behind my ear and into my neck and shoulder. I said no thanks and don't call me I'll call you.

    It will be interesting to see what kind of response you get to the new thread. Unfortunately many folks don't really understand the difference between spasticity and simple spasm related to surgical healing.


  • You're right, you didn't say that your lower back issues were causing your neck spasms. You didn't confuse me. I can do that very well myself! Lol!

    So far, there are no answers to my new post about spasticity. Last time I looked, it had been viewed 21 times, but no answers left.

    I would guess that the way that your doctor triggered the spasms in your legs, was by moving them in a quick, jerky way. That can trigger the spasms or can also trigger clonus (quick repetative jerky movements).

    How are you feeling now? I hope that someone will be able to help you with this painful condition.
  • Glad to know I wasn't losing my mind or confusing myself.

    In reference to the doc triggering the spasms, he actually moved my legs quite slowly in a manner that would cause different pressure and position on my lumbar vertebrae. Hard to explain, but very effective.

    Bummer no one has chimed in on your spasticity thread. Maybe they are all off enjoying the holidays and away from the computer.

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