Let's talk about pain for a minute
I fucked up the other day. I forgot to take my medicine. It was a busy day full of kids and adventure. I thought about taking my meds a few times but it slipped my mind until after dinner. It was like someone flipped a switch and I went from feeling okay to completely miserable. It took me a day and a half to recover to okay again too! Fuck!
Since my injury, I've had ringing in my right ear. So you have an idea of what that's like, it sounds like this. It's at varying volumes and I'm rather used to it now, but I know I'm in trouble when it gets to be more pronounced in my head, and I can FEEL the intensity of the pitch. It's kind of like electricity in my ear and feels like pop rocks. The pop rocks weren't so bad this time. Adding regular sounds on top of all these specatcular sounds is dreadful.
This is my warning that my TN is about to get owly. Here's an image of the nerves that cause my pain.
While that is happening, I also feel an intense amount of pressure in my right jaw joint, and there's heat. I feel the heat and vibration in all those little strings but especially that bunch of nerves in front of my ear. I imagine there's a soldering iron stuck on high in the side of my head. This is usually when I scream "uncle" and go find a dark place in my bed. I'll be there as long as I can be, curled in the fetal position trying not to panic. When I start to panic that pain is more intense, and I will end up being there in my bed longer than I want to be. So I try to relax. I'm thankful for all the "biofeedback" training I received as an adolecent for it has prepared me for this terrible fucking truth that I am surviving!!
The light causes another symptom of pain that only people that experience it would be able to understand. The light changes when I am in pain. It becomes flickering vibrations that penetrate my eye. It causes my eye to become goopy, tired and sore. I mostly just keep it closed during these times. Sometimes the light can be so heavy, I feel it pouring into my eye and down the back of my throat causing pressure. It makes me nauseous.
Muscle cramps and spasms are the norm for me now. I get them in my cheek, forehead, neck, shoulders, behind my ear, in my eye-lid, in my throat, under my tongue, and down my back. I think they're caused from all the burning pain in my neck. It all starts in the back of my neck and radiates up and down and then through my head and out my eye. It's real great. It almost feels like the muscles are ripping off my bones, or what I would imagine that to feel like. It's violent none-the-less and I don't appreciate it. There also may be some sneezing, puking, or gagging depending on what's happening in my throat. This time it was mostly gagging. I tried to breathe through most of it. It's like a contraction. This is bothersome when I'm talking but since words are hard for me during this time anyway, I temain pretty quiet.
Speaking of that, I should explain what happens to my speech as well. Speaking becomes exhausting and painful, and I can tend to sound pretty ridiculous so I try to remain quiet. My mouth no longer wants to do the "open" and "close" thing. My lips don't move the way I want them to so words come out slurred, or drool happens. I tend to mix words up and say things that don't make sense when I am in pain. It's fucking fun. There are levels of intensity to all of this like there's an imaginary slider that controls it up and down, up and down. The higher the intensity, the more frazzled I become and the more frazzled I become the more my brain short circuits and things start malfunctioning. This is all because of some stupid nerve in my neck! FUCK ME!
I don't eat much of anything during all of this either. Chewing is tiring. Swallowing is difficult. The mechanical "job" your tongue plays, well mine now fails at it. Shit falls out. The cons outweigh the pros. I'm feeling of hunger outweighs the painful feeling that eating brings.
I try not to panic. It only makes it worse.
How do I deal with the pain? I've learned to create spaces in my house that are comfortable when I'm feeling uncomfortable. I'm learning to speak up for myself even when I don't feel like opening my mouth. It's creating an overall more peaceful life for me. I've learned to eat ice cream and drink tea. I've learned that it's okay to curl up in the fetal position and sleep for 20 of 24 hours because of my face. Do you remember seeing the video of JFK's head being blown off? Like all the brain matter and blood shooting out of the back of his head? I imagine he felt similarly to me right before he lost conciousness. Graphic, I know. It's terrifying when the pain starts coming, because when it's intensity is on level 10 I find myself making deals with God. I don't understand how I'm expected to live a "normal" life like this. This Quarantine ain't got shit on me! pfft...
This time it took me a day and half to get back to a functional pain level. That's pretty good! These things I deal with daily on varying levels of severity. According to someone, I should be able to lead a normal life if I avoid my triggers.
Since my injury, I've had ringing in my right ear. So you have an idea of what that's like, it sounds like this. It's at varying volumes and I'm rather used to it now, but I know I'm in trouble when it gets to be more pronounced in my head, and I can FEEL the intensity of the pitch. It's kind of like electricity in my ear and feels like pop rocks. The pop rocks weren't so bad this time. Adding regular sounds on top of all these specatcular sounds is dreadful.
This is my warning that my TN is about to get owly. Here's an image of the nerves that cause my pain.
While that is happening, I also feel an intense amount of pressure in my right jaw joint, and there's heat. I feel the heat and vibration in all those little strings but especially that bunch of nerves in front of my ear. I imagine there's a soldering iron stuck on high in the side of my head. This is usually when I scream "uncle" and go find a dark place in my bed. I'll be there as long as I can be, curled in the fetal position trying not to panic. When I start to panic that pain is more intense, and I will end up being there in my bed longer than I want to be. So I try to relax. I'm thankful for all the "biofeedback" training I received as an adolecent for it has prepared me for this terrible fucking truth that I am surviving!!
The light causes another symptom of pain that only people that experience it would be able to understand. The light changes when I am in pain. It becomes flickering vibrations that penetrate my eye. It causes my eye to become goopy, tired and sore. I mostly just keep it closed during these times. Sometimes the light can be so heavy, I feel it pouring into my eye and down the back of my throat causing pressure. It makes me nauseous.
Muscle cramps and spasms are the norm for me now. I get them in my cheek, forehead, neck, shoulders, behind my ear, in my eye-lid, in my throat, under my tongue, and down my back. I think they're caused from all the burning pain in my neck. It all starts in the back of my neck and radiates up and down and then through my head and out my eye. It's real great. It almost feels like the muscles are ripping off my bones, or what I would imagine that to feel like. It's violent none-the-less and I don't appreciate it. There also may be some sneezing, puking, or gagging depending on what's happening in my throat. This time it was mostly gagging. I tried to breathe through most of it. It's like a contraction. This is bothersome when I'm talking but since words are hard for me during this time anyway, I temain pretty quiet.
Speaking of that, I should explain what happens to my speech as well. Speaking becomes exhausting and painful, and I can tend to sound pretty ridiculous so I try to remain quiet. My mouth no longer wants to do the "open" and "close" thing. My lips don't move the way I want them to so words come out slurred, or drool happens. I tend to mix words up and say things that don't make sense when I am in pain. It's fucking fun. There are levels of intensity to all of this like there's an imaginary slider that controls it up and down, up and down. The higher the intensity, the more frazzled I become and the more frazzled I become the more my brain short circuits and things start malfunctioning. This is all because of some stupid nerve in my neck! FUCK ME!
I don't eat much of anything during all of this either. Chewing is tiring. Swallowing is difficult. The mechanical "job" your tongue plays, well mine now fails at it. Shit falls out. The cons outweigh the pros. I'm feeling of hunger outweighs the painful feeling that eating brings.
I try not to panic. It only makes it worse.
How do I deal with the pain? I've learned to create spaces in my house that are comfortable when I'm feeling uncomfortable. I'm learning to speak up for myself even when I don't feel like opening my mouth. It's creating an overall more peaceful life for me. I've learned to eat ice cream and drink tea. I've learned that it's okay to curl up in the fetal position and sleep for 20 of 24 hours because of my face. Do you remember seeing the video of JFK's head being blown off? Like all the brain matter and blood shooting out of the back of his head? I imagine he felt similarly to me right before he lost conciousness. Graphic, I know. It's terrifying when the pain starts coming, because when it's intensity is on level 10 I find myself making deals with God. I don't understand how I'm expected to live a "normal" life like this. This Quarantine ain't got shit on me! pfft...
This time it took me a day and half to get back to a functional pain level. That's pretty good! These things I deal with daily on varying levels of severity. According to someone, I should be able to lead a normal life if I avoid my triggers.
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