Trigeminal Nerve Block

Discussion in 'Support' started by Coyotesheaven, Oct 18, 2016.

tinnitus forum
    1. Coyotesheaven
      Depressed

      Coyotesheaven Member

      Location:
      Utah
      Tinnitus Since:
      02/18/2015
      Cause of Tinnitus:
      Acoustic Trauma/Vascular
      This is being considered for me due to my migraine-like symptoms. I appear to have an overactive nervous system (no surprise). What is really nice about it is that it has only a few, rare side effects, so this might be an option for me.

      Has anyone had this procedure done and have noted any results from it?
       
      • Hug Hug x 1
    2. stophiss

      stophiss Member

      Location:
      Florida
      Tinnitus Since:
      April 2016
      Cause of Tinnitus:
      too full a life
      Not sure what form of nerve block you are referring to. But through your research, you may have come across what is called trigeminal neuralgia. Here is a definition:

      https://en.wikipedia.org/wiki/Trigeminal_neuralgia

      I know many believe that tinnitus is the single most overwhelming thing a person could possibly cope with and clearly for those with a severe case, there is a strong argument. Many here are beyond brave.

      Trigeminal Neuralgia however is coined the suicide disease because so many have taken their life over it. It maybe another order of magnitude of unthinkable pain so close to the brain. I have a mild form of it as it turns out due to a tooth extraction that damaged my inferior alveolar nerve on my right hand side. I theorize this has affected my vagus nerve and is a possible contributor to my tinnitus.

      Bottom line, is there is some seriously bad shit that can happen to people. I have enjoyed pretty amazing health throughout my life and I suppose I was due…including great hearing.

      But the storm came for me a little over 2 years ago and in the last 6 months tinnitus has paid a visit as well. Oddly the neuropathic pain I experience in my mouth and jaw has prepared me for coping with tinnitus. I didn’t think anything could be much worse and I would say my tinnitus isn’t FWIW.

      So Coyotesheaven, I know you have struggled mightily and are in a desperate search for answers. I hope you find your answers through the best neurologists and gain some treatment and peace.
       
      • Like Like x 1
    3. Coyotesheaven
      Depressed

      Coyotesheaven Member

      Location:
      Utah
      Tinnitus Since:
      02/18/2015
      Cause of Tinnitus:
      Acoustic Trauma/Vascular
      @stophiss

      Thank you for these words.

      I do not suspect trigeminal neuralgia alone but an over activity of my nervous system in general. Something wrong with the vagus is definitely a possibility in my case, because so many ear problems come from muscle movements near or in the head and neck. Because my symptoms are migraine-like that is another reason why I am considering this injection.

      My main ailment is not tinnitus, but progressive hearing loss in both ears, and the fact that I get tiny sudden hearing losses every day, with and without tinnitus.
      It's a serious, and frankly life threatening problem for me because I have latent sensory integration problems, and without good ears to guide my other senses, my ability to use vision, proprioreception, smell, and touch usefully becomes near hopeless. I can't form a unified picture of the world through vision alone; everything just feels to be floating in space and shrouded in darkness and I don't really have a good sense of where I am. I don't even want to go through all of the other horrific sensory distortions the hearing damage has caused. Hearing loss affects my ability to experience emotions and pleasure in serious ways too that my other senses cannot compensate for
      It's a purgatory sentence in a way; I could end up half dead in my mind and very absent from my surroundings, but physically alive to everyone else.
       
      • Hug Hug x 1
    4. stophiss

      stophiss Member

      Location:
      Florida
      Tinnitus Since:
      April 2016
      Cause of Tinnitus:
      too full a life
      Reading your journey Coyotesheaven...because your path is so unique, I believe you need to be with the best and brightest neurologists available. Have you considered contacting the Mayo Clinic to try and get to the bottom of your condition if you feel many of your senses are in a state of peril?
      I am sure everybody here joins me and hopes you recover from this...and hope you get answers soon.
      :huganimation:
       
    5. Jkph75

      Jkph75 Member

      Tinnitus Since:
      2/27/16
      Cause of Tinnitus:
      Unknown
      @Coyotesheaven

      Did you ever end up getting a nerve block? They want to give me one to the back of my head. I'm afraid it could end up making things worse.

      We're you able to try the Betahistine? I want to try to get some. What dosage were you considering?

      Things keep going from bad to worse for me. I keep loosing my hearing when I am in a car. I feel all of this pressure in my ear. My hearing is down for several hours until the pressure releases. Each time it takes more hearing with it. I am never dizzy at the same time. This low noise keeps getting louder and louder after every time I lose my hearing. I think that I actually have migraine associated vertigo and hydrops. At least that's my theory at the moment. No one will help me though. How are you?
       
    6. Coyotesheaven
      Depressed

      Coyotesheaven Member

      Location:
      Utah
      Tinnitus Since:
      02/18/2015
      Cause of Tinnitus:
      Acoustic Trauma/Vascular
      @Jkph75

      I did get a nerve block on one side of my head. Didn't do anything to stop the migraine symptoms because I don't really have migraines. It may help you if your symptoms are being caused by migrainous vasospasm, and I would try it. I also had a vasovagal reaction to the needle, which is why I couldn't get it done both sides. But again, its efficacy depends on the nature of your migraine. If you have physical damage to the circulation supplying your inner ear I don't think it will work.

      Betahistine was useless for me. Stayed on it for a month and I only seemed to deteriorate. You can always try it, because it is one of the most side effect free drugs out there. I don't remember the doseage but perhaps look at what other people do. Glynis might know of an appropriate dose.

      For me....it's more or less over. I had 3 days before I went to some real specialists but then things took a turn for the worst. I have mild hearing loss in both ears now, overnight and from swallowing and doing silly little things. I've been so psychologically maimed by this and my other health problems over the last 2 years that I'm getting assisted euthanasia; I just don't know when yet. I'm sorry to be honest but I think the world should know that hearing disorders do indeed kill.
      If anyone else was autistic and had fundamental needs dry up, and sensory processing go caput because multiple forms of sensory fail, the results are catastrophic and destroy any inner reasons to stay alive. I've had it with the medical community saying my life is expendable as is, not that the'll ever get it from the thousands of people they already kill in my country from physical or psychological reasons.
       
      • Hug Hug x 1
    7. stophiss

      stophiss Member

      Location:
      Florida
      Tinnitus Since:
      April 2016
      Cause of Tinnitus:
      too full a life
      You are so brilliant Coyotesheaven. Please reconsider your decision to end your life. Are you unable to escape your personal torment and immerse yourself into activities that bring you any level of personal joy? With all the people on the planet that just occupy space, it is you who deserve to live with the depth of your insight about life. Can you not forgive the medical industry for their ignorance? Yes, this is the stone age of medicine. Look back one hundred years when people were performing bleeding rituals to rid disease. The medical industry has made giant leaps. Yes, mankind is hamstrung by our evolution. Super computers will change medicine entirely. Of course we all are frustrated to not live in a time of greater enlightenment including knowledge of autism which makes you so unique and gives you such great depth of perspective reflected in your writing..
      I believe there will be further strides in the next 20 years and hopefully relief to tinnitus sufferers before then.
      I wish you peace.
      :huganimation:
       
    8. Jkph75

      Jkph75 Member

      Tinnitus Since:
      2/27/16
      Cause of Tinnitus:
      Unknown
      @Coyotesheaven

      I had the nerve block today. What a fantastic thing. Got rid of some pain. I wish I could get one near the TMJ area. I think it may have lowered my tinnitus for a little while too. Unfortunately, it did nothing else for my ear. My hearing is fluctuating more to the point where I can notice it now. Idk what to do. I know if I take more Prednisone it can fix it for a while anyways.

      Let me ask you. Can you hear better sometimes just while you are yawning? I can often hear normally while I am yawning but then it goes right back to crappy hearing afterwards. What do you think is wrong with you? And who were the real specialists that you were going to see? I could use one of those.

      I can relate to how you feel about losing your hearing. I feel like I am drowning. I'm trapped inside myself. Inside with this noise. I can see people and hear them somewhat, but I'm drowning. This thing is slowly suffocating me. No one understands. Everyone thinks I should just calmly go deaf. I know how lonely and isolated you can feel. No one understands. Even most people on this board can't understand. It's one thing to have to deal with these noises and another to have some sort of deteriorating condition.

      I think you and I are alike in more ways than just our symptoms. I've always been good at taking in all of the data and making a determination about what was going to happen. I can often predict or know things about people that I don't know at all. People used to think I had some sort of 6th sense. I don't. I'm just good at making observations and seeing patterns. But when I younger, I thought that I could apply this to my own life. I thought that I knew what was going to happen all of the time. I can tell you now that I am much older that I didn't. I thought I knew who I would marry. Wrong. Where I would live. Wrong. Then, I tried to have kids for so many years. I went through so many fertility treatments and rounds of IVF that I lost count. We were given really low odds of ever having a kid even with the best treatment at the top clinic. I thought I would never have a baby. Wrong again. I had one and then another one. Both without any treatment. You can think that you are going to go deaf but you don't know it. No one has proven it. Then, you can think that your brain would never adapt but you don't know that either. You also don't know when or if your condition could be cured. There is more at work in this world than what we can see and touch. You are a very bright young woman, but you have come to the wrong conclusion here. You don't know how this is going to turn out. You also don't know that there isn't a purpose to what you are going through now that you will realize later. Look at all the people who you have helped just being on this forum. You have no idea what is in store for you. Where there is life there is hope. I have hope for you.
       
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