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"Pain coma" experience and struggles

CrystlejockCCrystlejock Posts: 1
edited 09/03/2015 - 10:27 PM in Chronic Pain
Hey all. I am writing for my wife who is disabled. 10 years ago she started suffering from a variety symptoms which became so severe she was told she would likely not live past 6 months. Shortly after this, they found a tumor which was tethering her spinal cord. When the tumor was removed, it revealed her spinal cord was being stretched at least 2-4 inches. The tumor was removed and by managing her symptoms (especially chronic pain) caused by severe nerve damage, she has made an incredible recovery... but the nerve damage is permanent.

As she got sick and her pain level increased, she started to go into what she was told were pain comas. During which she was technically conscious but would blank out and babble incoherently and was confused, appearing completely disoriented. She had no recollection of any of this, thinking she went from the moment before the coma to the moment after in the blink of an eye.

When the pain comas happen she describes the sensation of slowly submerging her head into water, starting at the back of the head and slowly moving towards her face, as though she is lying back into a tub. She says it feels empty and black, like every part of her brain that was touched by the water was going shutting down. She said she felt like she was losing parts of herself : memories, skills, her own name. When it reaches her face everything goes blank. She says she felt like she was trapped forever in this emptiness which made her feel like she didn't exist anymore. She was unaware of anything going on around her despite being appearently conscious.

She continues to experience this sensation once or twice a month but with her current symptom management regimen, it's rare for her to feel completely "submerged".... sometimes she only feels a half an inch, sometimes it feels like it's as far up as right behind her eyes. The more severe the episode the less she can function.

Loss of function can include inability to:
Solve problems
Recognize environment/others
Remember date/time/her name
Remember vocab
Use motor skills
Empathize or feel any emotion

This experiment continues to be a strong fear of hers, even the slightest beginning of this sensation will cause her to panic and go through depression.

We want to know what is going on that causes this sensation... brain damage? Nerve damage? Has anyone else ever felt like this? Are there ways to prevent or cope with it? Is there a way to keep it from progressing? Is there anything I can do for her as she goes through this?

She is scared she will one day be trapped in the water forever. :(

No one on the Spine-Health patient forums is medically qualified to provide any advice


  • LizLiz Posts: 7,832
    Please take the time to read this post and refer to it when you have questions

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    Spinal stenosis since 1995
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    Cervical stenosis, so far avoided surgery
  • itsautonomicitsautonomic LouisianaPosts: 1,805
    Wow that's horrible, while no coma I have experienced bouts of deep confusion, blank stares, unable to solve problems , have motor control issues and trouble speaking . It's very scary. And I have no normal emotions and honestly that is really horrible and I miss being happy, sad , melancholy, touched , excited, etc etc. I could never explain it but it's something I long for again
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    edited 09/06/2015 - 8:49 PM
    I really don't know if this is the same thing but when I'm very tired and in a lot of pain and I lay down I feel like I'm submerged. I cannot move but I'm not sure I want to. I'm just floating, existing, breathing. I have a service dog who does everything he can to get me out of this state. He'll start with kissing me over and over and then move on to digging at my arm. It hurts temporarily but I cannot make myself move to get him to stop it. And then all is black again. Sometime later, I'm not sure how long, I'm back, awake, okay. I have very little idea of how long I've been asleep or out of it.

    I've just thought of it as dissociation from extreme pain. It feels deeper than sleep. Fortunately it only happens when I'm at home although I've been afraid it would happen when I am someplace equally comfortable. I don't think I have the other cognitive issues but I'm always alone except for the dog. But thinking about it, I may film myself to get a better understanding for me- lol, and make sure the dog isn't getting into the treats!

    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
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