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  • Geniculate neuralgia and sleep

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    Old 11-24-2016, 11:56 AM   #1
    Mjjm89's Avatar
    Join Date: Nov 2016
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    Mjjm89 HB User
    Unhappy Geniculate neuralgia and sleep

    So I've been diagnosed with trigeminal neuralgia- geniculate neuralgia to be exact.
    I have severe deep inner ear pain that's stabbing burning and crushing and goes down my neck jaw.
    The interesting part is that my pain is triggered by sleep. No matter how or when I sleep it causes the onset of the severe pain.
    I am currently of 225 lyrica and 800 tegretol. I initially had relief for a few weeks but the pain came back as it was before. My medication now keeps increasing and I have yet to have any relief. I am going insane.
    I have an Mri and ct scheduled for next week issued by a neurosurgeon.

    Has anyone experienced any of this or at least some? Feedback would be great

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    Old 07-15-2017, 09:42 PM   #2
    Rachelleb's Avatar
    Join Date: Jul 2017
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    Re: Geniculate neuralgia and sleep

    I have suffered with this for many many years--at least 25. Initially it occurred only rarely and like you, it is always during sleep. I wake up feeling like an ice pick is stuck in my ear. There may also be tenderness to the touch just below my ear as well. It doesn't seem to matter in what position I'm sleeping.
    Over the years it has begun to happen more frequently. Here is how I have managed it without medication: I keep a small refrigerator in my bedroom with an ice pack in the freezer section.(I actually do this because of migraines and the ice packs help me when I wake up from sleep with a headache). As soon as I'm awaken with the ear pain I get the ice pack and lay back down with my ear directly on the ice pack. The pain is immediately relieved.
    One thing that I notice makes it more likely that I will have the pain is if I use an earbud in that ear, especially when I'm going to sleep (I often listen to an audiobook when I go to bed). So now I avoid stimulating that nerve by only using the earbud in the other ear.
    I have read that tecma tall is used to treat this but I am not keen on the side effects of Tegretol, including memory issues and problems with bone density. Also, I was put on a medication called Gralise, which is a slow-release Gabapentin. Although it was not intended to treat this problem, I discovered that I get many fewer bouts of the nocturnal ear pain on this medication. However I've recently weaned myself off of it because of issues related to bone density. Due to long-term effects of these medications, I am going back to treating the pain with the ice packs when it occurs. Although it doesn't prevent the pain, the pain relief is immediate, pretty much on contact.
    I hope you find relief. Please let me know if Ice Packs work for you.

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    geniculate ganglionitis, pain, trigeminal neuralgia, trigeminal neuropathy

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