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questions on Dysautonomia

dysautonomia

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#1 jack black

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Posted 17 December 2017 - 06:20 AM


I have to admit that only very recently I've heard about Dysautonomia. Kind of embarrassing considering I had some medical backgrounds.

Cursory read of the wiki: https://en.wikipedia...ki/Dysautonomia

indicates that I have some of the listed symptoms:

 

Specifically, I have (fortunately not all the time):

double vision

 

Brain fog

Anxiety

Difficulty swallowing

Exercise intolerance

Chronic fatigue

 

I also have some gastroparesis and gustatory sweating that are considered Autonomic dysfunction symptoms associated with mortalities.

 

However, those are fairly non-specific symptoms and I clearly don't have the classical Orthostatic hypotension or Syncope.

 

Sounds like there is no cure and only symptomatic treatment is available, so there would be limited benefit in my case to make that diagnosis.

 

Any takers?

 



#2 face

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Posted 18 December 2017 - 06:32 PM

That's no surprise since most doctors have never encountered dysautonomia. My SO has the disease, and while there currently is no cure, it's very important to keep sodium levels up as well maintain a regular exercise schedule. I understand it is very difficult for you, but please attempt to at least go for a walk every day.

 

http://www.ndrf.org/

 

 


Edited by face, 18 December 2017 - 06:33 PM.

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#3 Mind_Paralysis

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Posted 18 December 2017 - 08:26 PM

Dysautonomia in itself is not the actual disease though - there's always a reason for it... multiple, multiple ones. There's an underlying disease triggering it.

 

@Jack_Black: I take it you're evaluating the wiki-list of diseases (most of them auto-immune) which cause Dysautonomia? Does any of them ring more of a bell at this moment?

 

Wait... you just mentioned how you've got symptoms of Chronic Fatigue Syndrome - if that's really the case, then you need to look into the latest on CFS - the metabolomics-testing is in the works there, perhaps you can find info on what the testing entails, in order to test yourself? CFS is, after all, considered a form of metabolic disease.

 

Are you SURE you've got CFS though? I often think I have it, but then when I look closer, it's just because I've got PLMD and SCT - there are many, many surface-level similarities between those symptoms and CFS.

 

I sometimes believe I have exercise-intolerance as well - but then I realize that I had x amounts of awakenings the night before, and then I temporarily increase Gabapentin and what do you know! Exercise-intolerance gone... No sleep will f*ck with recuperation like no-body's business.

 

So, is there someway you can exclude neurological diagnosis messing with you, and not a immune-system or metabolic diagnosis? Autism does carry with it a certain amount of comorbid disorders - PLMD and SCT-cases are proven and believed to be common comorbidities.

 

Autism is an interesting root to start from btw... we've talked a bit about the apparently confirmed signs of METABOLIC ABNORMALITIES in Autism, but we've never dwelt too deeply into it... What are the most common metabolic abnormalities in Autism? Could they be connected to the issues you mention in your post? It might be possible to test for them, if any of the seem reasonable as a source of your issues.

 

I believe there is talk about mutated mitochondria in Autism... is there not? Changes to the way the body utilizes energy does seem like something that could cause CFS.


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#4 jack black

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Posted 18 December 2017 - 11:25 PM

Dysautonomia in itself is not the actual disease though - there's always a reason for it... multiple, multiple ones. There's an underlying disease triggering it.

 

@Jack_Black: I take it you're evaluating the wiki-list of diseases (most of them auto-immune) which cause Dysautonomia? Does any of them ring more of a bell at this moment?

 

Wait... you just mentioned how you've got symptoms of Chronic Fatigue Syndrome - if that's really the case, then you need to look into the latest on CFS - the metabolomics-testing is in the works there, perhaps you can find info on what the testing entails, in order to test yourself? CFS is, after all, considered a form of metabolic disease.

 

Are you SURE you've got CFS though? I often think I have it, but then when I look closer, it's just because I've got PLMD and SCT - there are many, many surface-level similarities between those symptoms and CFS.

 

I sometimes believe I have exercise-intolerance as well - but then I realize that I had x amounts of awakenings the night before, and then I temporarily increase Gabapentin and what do you know! Exercise-intolerance gone... No sleep will f*ck with recuperation like no-body's business.

 

So, is there someway you can exclude neurological diagnosis messing with you, and not a immune-system or metabolic diagnosis? Autism does carry with it a certain amount of comorbid disorders - PLMD and SCT-cases are proven and believed to be common comorbidities.

 

Autism is an interesting root to start from btw... we've talked a bit about the apparently confirmed signs of METABOLIC ABNORMALITIES in Autism, but we've never dwelt too deeply into it... What are the most common metabolic abnormalities in Autism? Could they be connected to the issues you mention in your post? It might be possible to test for them, if any of the seem reasonable as a source of your issues.

 

I believe there is talk about mutated mitochondria in Autism... is there not? Changes to the way the body utilizes energy does seem like something that could cause CFS.

 

All good points (as usual) and especially the autism part. I googled and there is a strong link between ASD and Dysautonomia indeed:

 

 

Autonomic nervous system
dysfunction (dysautonomia)
in ASD
In recent years, an increasing number of researchers
and clinicians have focused their attention on
abnormalities of the autonomic nervous system
(ANS) within the ASD population.
Elevated sympathetic and lowered parasympathetic
activity is frequently present in children and adults
with autism
whether or not they have more
obvious outward symptoms or signs of
autonomic abnormalities
(Toichi and Kamio, 2003;
Ming et al., 2005; Fan et al., 2009; Patriquin et al.,
2011; Cheshire, 2012; Daluwatte et al., 2012).
It has been suggested that manipulating autonomic
function could be a possible treatment avenue for
aggression, anxiety and irritability, as well as the core
symptoms of autism and cognitive functioning (Ratey
et al., 1987; Narayanan et al., 2010; Beversdorf et al.,
2011; Bodner et al., 2012). Following very promising
pilot trials on adults with autism, which
demonstrated that adrenergic antagonist propranolol
improves the core features of the disorder, such as
impaired social interaction and communication,
randomised controlled trials are currently underway
at the University of Missouri, MU Thompson Center
for Autism and Neurodevelopmental Disorders.

 

http://nationalautis...esinASD2013.pdf

 

I did use propranolol myself for performance anxiety and it helps with that and even general anxiety, too. I never took it for more than one day. May need to revisit it.

However, I just discovered that the strongest help for my typical daily PM fatigue is 5mg of methylfolate. I'm puzzled why. Of course I'm aware that it's marketed as antidepressant (Deplin).

 

Funny that you mentioned PLMD. My significant other has it. Maybe she should try gabapentin for that?

 

If I have bad sleep for whatever reasons (there are many), my ADHD is really bad next day.


Edited by jack black, 18 December 2017 - 11:33 PM.


#5 bariotako

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Posted 23 April 2018 - 11:51 AM

If you have double vision, so you don't have dysautonomia but multiple sclerosis. 


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#6 bariotako

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Posted 23 April 2018 - 09:36 PM

" need reference"

 

If you have  double vision ITS MULTIPLE SCLEROSIS,ITS THE MOST WELL KNOWN SYMPTOM OF THIS DISEASE

 

 

Seriously, you have double vision and don't go to the doctor ?   


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