Chiari 1 - Apnea...
Sep. 5th, 2015 09:47 pm![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png)
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Hey
This is goong to be a long story leading to one question; does anyone know how apnea works/feels like?
I have had some bladder stuff going on for the last two years. The doctors have tested for everything possible, and more or less told me that I just have to live with it, they have teated for everything it should be. I would have hoped to met a "dr. House" type of doctor who would look outside the box, but well...
I just came across well two "syndrons", not quite diseases. Ehler danlos and Chiari 1.
My mums friend has a daughter who was just disgnosed with ehler danlos syndrom. When she listed synpthoms my mum was like "that sounds like my daughter". I have some of the sympthoms for that. But reading about that I found that it is often assosiated with Chiari 1.
Reading about symptoms for that shocked me. I have a lot of headaces, often in the back of the head radiating from the neck. But I hava a "strong" neck (for lack of a better description), and I have always figured that it was tension headaces. I also have Tinitus. I have also always thought that it was due to listening to too much loud music. I have not gone to the doctors for this because there are not a lot to do about it, and I thought they were self explainatory.
I also have a bad balance, skoliosis, cronic cough, blobs in my vision when I close my eyes in a dark room. All of these are symthoms of chiari 1. I was kind if !!! This really sound like me!!!
I have yet to go to the doctor to be diagnosed. Unless the synptoms are severe, I have to live with it... So no rush. The treatmens is spinal surgary so, yeah, not really something I want to do unless I have to. But it would be nice to kniw right...
But I have one more thing. I have never really thought too much about it, it is just there.
I sometimes forget to breath. At least that is what it feels like. Like my brain forget to breath, and suddenly my body take a sharp intake of breath, and I am fine. I don't really get the feeling that I am forgetting to breath untill my body takes that sharp intake of breath.
Sleep apnea is a symptom of chiari 1. But this is while I am awake. I know awake-apnea (also called apnea) excist. But I am not too sure if what I am experiencing is apnea.
So this long explenation is leading to; does anyone know how apnea works/feels like?
My bladder stuff don't fit the symptom "loss of bladder function", but the brain is under preasure, a cyst in the spine is common with this, and in my mind it should be possible that something might be conpressing the wrong nerve, and that is causig my problems.
I would like to have all my symptoms down before seeing my doctor, and it would he helpfull to know if I possibly also have apnea :)
Sorry for the long post :)
This is goong to be a long story leading to one question; does anyone know how apnea works/feels like?
I have had some bladder stuff going on for the last two years. The doctors have tested for everything possible, and more or less told me that I just have to live with it, they have teated for everything it should be. I would have hoped to met a "dr. House" type of doctor who would look outside the box, but well...
I just came across well two "syndrons", not quite diseases. Ehler danlos and Chiari 1.
My mums friend has a daughter who was just disgnosed with ehler danlos syndrom. When she listed synpthoms my mum was like "that sounds like my daughter". I have some of the sympthoms for that. But reading about that I found that it is often assosiated with Chiari 1.
Reading about symptoms for that shocked me. I have a lot of headaces, often in the back of the head radiating from the neck. But I hava a "strong" neck (for lack of a better description), and I have always figured that it was tension headaces. I also have Tinitus. I have also always thought that it was due to listening to too much loud music. I have not gone to the doctors for this because there are not a lot to do about it, and I thought they were self explainatory.
I also have a bad balance, skoliosis, cronic cough, blobs in my vision when I close my eyes in a dark room. All of these are symthoms of chiari 1. I was kind if !!! This really sound like me!!!
I have yet to go to the doctor to be diagnosed. Unless the synptoms are severe, I have to live with it... So no rush. The treatmens is spinal surgary so, yeah, not really something I want to do unless I have to. But it would be nice to kniw right...
But I have one more thing. I have never really thought too much about it, it is just there.
I sometimes forget to breath. At least that is what it feels like. Like my brain forget to breath, and suddenly my body take a sharp intake of breath, and I am fine. I don't really get the feeling that I am forgetting to breath untill my body takes that sharp intake of breath.
Sleep apnea is a symptom of chiari 1. But this is while I am awake. I know awake-apnea (also called apnea) excist. But I am not too sure if what I am experiencing is apnea.
So this long explenation is leading to; does anyone know how apnea works/feels like?
My bladder stuff don't fit the symptom "loss of bladder function", but the brain is under preasure, a cyst in the spine is common with this, and in my mind it should be possible that something might be conpressing the wrong nerve, and that is causig my problems.
I would like to have all my symptoms down before seeing my doctor, and it would he helpfull to know if I possibly also have apnea :)
Sorry for the long post :)