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You can die as a complication of autonomic neuropathy?

Discussion in 'General ME/CFS News' started by Ocean, Apr 18, 2012.

  1. Ocean

    Ocean Senior Member

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    This article posted on this blog post gives cause of death as "respiratory and cardiac arrest due to autonomic neuropathy." I had no idea autonomic neuropathy could lead to death. Also, I don't know if I posted this in the appropriate forum section.
  2. lnester7

    lnester7 Seven

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    I can see how!! Sometimes I feel I am going to have a heart attack! My HR gets out of whack and I cannot control it. The other day was stock high at 164, I could not get it down even laying down in the floor at work on somebodies' office, eventually it went down. Some times it goes Low. Every time I cannot control it by sitting then I just lay down flat but sometimes it just gets stock or goes erratic. Nothing I can do.
  3. Desdinova

    Desdinova Senior Member

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    Somewhat of Ballsy move by the coroner to mention CFS. I can't help but wonder and ponder the notion that the coroner knows that CFS is partially a smoke screen used to cover up ME. And that the CFS diagnosis catches people suffering from ME and other serious fatiguing illnesses in it's web of concealment and misdirection.
  4. alex3619

    alex3619 Senior Member

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    Given that some of us almost die in a tilt table test, its no surprise. If I recall correctly some of us are advised to tell people to lie us down flat or with elevated feet to correct an OI crash. I wonder though if autonomic neuropathy means what we think it does? When I first read this blog some days ago I was not sure. I am still not sure. The post talks a lot about immune issues. I think the information is probably more confusing than definitive, though it wouldnt surprise me if it was an autonomic problem.

    Just as a warning my heart stopped during my TTT - OI can definitely kill.

    Bye, Alex
  5. taniaaust1

    taniaaust1 Senior Member

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    Im not sure if I'd call some kind of allergic reaction autonomic neuropathy but we can die from that.

    I went throu a stage for months where I was completely unable to feel temperture. I was outside on a high 38-40 degree celicus day.. laying in the sun wearing a jumper and rugged up as I felt cold, I was actually shivering thou didnt feel feverish. I wasnt aware it was a hot day till a friend was shocked to see me like that and told me. A doctor said I could of died due to not being able to feel the heat.

    I also worry if the autonomic dysfunction I have will one day stop my heart.. when Im standing it can miss beats (up to 3 beats). My BP shooting up to 170/138 when Im standing.. also makes me worry i could have a stroke or heart attack.

    My heart rate drops to 51 when Im asleep or possibly lower.. and its not cause Im very fit. I believe Ive passed out while laying down on a few occassions due to it going too low. It hasnt happened in a while but I have fainted while laying and relaxed. (at least dying in my sleep would be a good way to go).

    I think there is many different issues of autonomic dysfunction which could end up killing us.
  6. Wildcat

    Wildcat Senior Member

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    I worked out that people died from ME, within 3 months of myself becoming ill after a severe viral disease. After months of a virtual comatose state, and near starvation because of inability to look after myself. I did not have a clue (at the time) of what I suffered from.

    But I knew that whatever it was, that people died from it they died from it direct (with brain and spinal cord symptoms; and severe immobility to the point of non-mobility, inability to breathe, move, eat or function in any way; and inability to feed oneself); and I later worked out that people died from neglect of basic care (ie basic homecare), and yet later realised that that people with ME died from actual persecution by doctors who were obsessed with the so-called treatment of GET (ie myself (nearly) and Sophia Mirza).

    Yet much later (after a decade before I could even read, write or use a computer again) I worked out that the symptoms and disease pattern of the CCC is what I had suffered from for nearly 2 decades.

    .

    I am sorry, but conflating Fatigue-based 'CFS' with 'Mylagic Encephalomyelitis' (WHO Classified ME) is costing lives and causing deaths!

    If the 'CFS' 'Fatigue' campaigners had had their way - I would be six feet under as well!
    .
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, you can die from autonomic dysfunction. And Alex, yes, the TTT is no joke. I am glad that my doc (who also had autonomic dysfunction and had taken TTT's himself), told me to stop the test if and when I felt really bad.

    I stopped the test when my BP was 88 over 80--I felt really bad!

    My doc also pointed out, in a video about autonomic dysfunction, that sometimes it is hitting your head on something when you faint that is a bigger danger than the faint itself. He had been taken to the ER several times after cracking his head on something when he passed out.

    Sushi
  8. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I was much too ill for the TTT. Did other testing. You need to use the supplements/foods that heal the nerves to get the nerves growing and working again. Many docs have no clue how. Many just give prescriptions but no healing happens. I see this on the forums for POTS/Dysautomonia. It is very serious and must be treated correctly. I am thankful to have good doctors and we work together. I do a lot of research daily.
  9. Wildcat

    Wildcat Senior Member

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    But the ME sufferers who are at risk of dyjng are too sick to seek out internet advice, and do not have helpful doctors (especially in Britian, where the so called 'clinic specialists' follow the psychosomatic NICE Guidelines, whatever their supposed 'speciality' is!)
  10. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Yes, hope the UK can change sometime soon.

    I was very ill when we looked for doctors. CFS for 20 years. POTS for three. I found help, it takes a lot of looking and research for sure. All illness does. I had another problem before all of the CFS started. We finally found the right doctor to operate on me, very rare problem.
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    The "helpful doctors" part is unfortunately true most every place, but ME sufferers who could be at risk of dying from autonomic dysfunction may be on the internet forums or not. I well could be as I get heart arrhythmias, but I don't type on forums in the midst of one. Otherwise, I am fairly high functioning.

    Best,
    Sushi
    taniaaust1 likes this.

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