Dysautonomia or autonomic dysfunction

[MissRita]

Hi all!

Thoughts on Dysautonomia or autonomic dysfunction?

Thanks!

[park_bear]

The autonomic nervous system controls many different things. The form of autonomic failure I am familiar with is postural control of blood pressure. This is the form of Dysautonomia that you are referring to or something else?

[MissRita in reply to park_bear]

Possibly. Was trying to get a consensus of how it relates to PD.

[GymBag]

Dysautonomia (or autonomic dysfunction same ) is a condition in which the autonomic nervous system (ANS) does not work properly and is very serious.

It is often referred to as a feature, has a major effect on many parts of the body the heart, bladder, intestines, sweat glands, pupils, and blood vessels and on and on. It can have many many causes , one of them being Parkinson's .

If things were not bad enough not being able to keep muscles under control the PD blows up the autonomic nervous system. I have all the symptoms as I suspect most Parkys that have been around awhile have also. This is where your medical family doctor fits into your medical team. There seems to be some effort to establish it as a stand alone decease because it appears in relation to so many other Deceases. It appears later in the PD struggle and sets things up so you can more easily get Pneumonia, which is pretty much the last station on this ride. Bumpy huh

I dont know who designed this ride , the ancient Greeks said the three Faits ( three witches) were involved because man could not believe that all this crap happened accidentally or randomly to someone. It just keeps coming, but believe it or not today is a very good day .

It is probably worth investigating if anything helps avoid it but our ANS is fragile.

[ddmagee1 in reply to GymBag]

You have explained perfectly my frustration, at having ANS symptoms/problems, as a consequence of dealing with Parkinson’s disease.

[aspergerian in reply to ddmagee1]

Search HU PD for dysautonomia, postprandial hypotension, orthostatic hypotension, Goldstein, coat hanger syndrome.

I have been diagnosed as having coronary dysfunction related to autonomic pathology.

See:

ww2.mc.vanderbilt.edu/adc/4787

[aspergerian in reply to aspergerian]

Here is a sketch written by me yesterday, sent to physicians.

****

After breakfast, after lunch: cervical spine, gastric emptying. Bed as tool.

[I had been sitting upright near nurse station in nursing home after breakfasts and, was hoping to accelerate gastric emptying. But due to my cervical spine pathologies, my episodes of postprandial hypotension were being increased in severity and duration resulting from my heart having to provide adequate blood flow to C5, C4, C3, and upwards to atlas, axis, and brain.]

Recently, I have chosen a supine position for resting, for appx an hour after breakfast and after lunch. I use the bed tilt for upper body. Several water bottles line the edge of my bedside table. I boost my upper torso to ~25 degrees and drink water. This augments gastro emptying and motility.

Appx every 3-4 minutes I drink water. This helps food move down the tube. After swallowing, I lower my upper torso. These lower positions enable some blood to reach my brain. Nutrients, levodopa, and oxygen are not as excluded. When I arise and walk to bathroom, I have more coordination/motor skills than had I merely struggled to sit by the nurse station.

Intersecting pathologies. My heart is weak. Pumping blood uphill in my cervical spine during postprandial blood pressure shift is no longer efficient. The bed exercises help.

Perhaps further elaboration will follow.

[Aspie,aspergerian]

[ddmagee1 in reply to aspergerian]

Thanks for this info. aspergerian! It is very helpful to me. I’ve been having problems with fast heartbeat, episodes, and diagnosed with orthostatic hypotension, amongst other autonomic system symptoms.

[GymBag in reply to ddmagee1]

A scream might do the same thing. I try to not let frustration turn into anger or outburst or any feeling of self pity or despair but it is getting really damn difficult. I some times feel like this is some giant test to see what the limit I can endure is and the Greek myth of the Three Fates becomes more plausible every day . Keep fighting

Oh by the way The Fates are pity-less and can be made angry "do not tempt the fates "

One Fate sets out how we will live , one how we will die and one determines when . See now it all makes sense or maybe not.

Another thought , I think " Brain Fog " is just a myth

[SilentEchoes]

You have a good question and I will attempt to explain dysautonomia, a factor in my ALS plus syndrome (motor neuron disease) that I am all too familiar with.

The hypothalamus is the master gland for the autonomic nervous system and is part of the central limbic system.

The research article I have linked below, discusses thiamine deficiency in Beriberi as a prototype for autonomic dysfunction and can explain why high dose thiamine could be therapeutic in PD and other neurodegenerative disorders.

Phosphorylation of thiamine is known to be extremely important in energy metabolism in the brain and its association with glucose in energy metabolism. Thiamin deficiency disables the aerobic pathway for glucose metabolism, it is equivalent to oxygen deprivation.

Thiamin stands at the gate of the citric acid cycle, a key factor in aerobic (oxygen) metabolism. This vitamin is only one of the necessary principals in the citric acid cycle, its place in that function, however, can be used as a model for what happens in inefficient energy synthesis (mitochondrial dysfunction).

A good resource is a book written by Dr. Terry Wahls who developed a nutritional protocol that lead to her recovery from an advanced stage of Multiple Sclerosis. The lesions in her brain are still there but she is no longer disabled by them.

Increasing the consumption of simple carbohydrate in the diet automatically increases thiamin requirements. The enormous consumption of sugar in America represents high calorie malnutrition.

This can explain why a Ketogenic diet with specific supplementation (Wahls protocol) is therapeutic in neurodegenerative disorders. A Ketogenic diet is low in carbohydrates, with moderate protein and high fat (good fats) consumption.

You cannot supplement yourself to good health without also changing your diet and lifestyle habits.

Autonomic dysfunction has been reported in vitamin B12 deficiency. Other related deficiencies are: vitamins E and A, and magnesium.

As the immune response breaks down there is more susceptibility to overwhelming infection.

There is much more information in the article linked below. It's well worth your time to read it.

ncbi.nlm.nih.gov/pmc/articl...

Based on my own research, I am also supporting brain glucose metabolism with intranasal insulin. But that's a separate discussion.

SE

[GymBag in reply to SilentEchoes]

This is the best damn post I have ever read in this forum

finally an explaination

Thank you Thank you

[SilentEchoes in reply to GymBag]

❤

[MissRita in reply to GymBag]

Glad I asked!! ❤️

[Rosenmu in reply to SilentEchoes]

Through what I have read, toxins also play a big role affecting the a_synuclein and causing clumping. Some toxins never leave the system unless purposely detoxed. As the case with Bpa, PD patients have issues being able to rid the body of it.

The term 'high caloric malnutrition' is very appropriate and sums it up.

I'm wondering if there is substance pertaining to the use of hyperbaric chambers from what I have read recently and this article.

There is a Mitochondrial Summit coming up in December, free to listen.

Thanks for posting this.

[SilentEchoes in reply to Rosenmu]

Both natural and manmade toxins can cause illness. In my case it was organophosphate poisoning (Roundup Original ll) and I believe that industrial chemical exposure is the major culprit in the explosion of neurological disorders, aided by the modern vaccine schedule. There is no such thing as a "safe" pesticide.

Like many on HU, I've done years of independent study and stand behind my opinion - there's no real controversy unless you are on the side of industry.

Thanks for the feedback.

SE

[park_bear in reply to SilentEchoes]

This: "There is no such thing as a "safe" pesticide."

[ddmagee1 in reply to SilentEchoes]

Wow! SE, this is a fantastic posting-exactly the type of explanation I was hoping to find! I will follow up with the Ketogenic diet, and Vitamins B-12 & B-1. Thanks so much for your help, and information SE!

[Gioc in reply to SilentEchoes]

Very interesting, the energetic role of thiamine on nerve cells is well known, what was missing was only the use in practice as mentioned by Dr. C in an interview on YouTube. I quote Dr. C.: "There (Liège congress on vitamin b1, 2015) we found the greatest specialists in the world for the study ... Professor Bettendorf Professor Butterworth and a whole series of colleagues who are the world dome of biochemistry for the study of this molecule and therefore they congratulated us and we were not used to it, we were intimidated, I didn't speak English, I did the introduction in Italian, who could ever think that in the scientific committee there was the doctor Bunik, Dr. Garraux, Dr. Parkhomenko of the University of Russia ... of Moscow, doctor of the brain, from Moscow, from Ukraine,Worldwide.

They selected our works, they were the only works that concerned the use of the molecule in practice.

They have been saying for years that vitamin b1 plays an important role in neurodegenerative diseases and that neurodegenerative diseases are similar to each other. "

[SilentEchoes in reply to Gioc]

"neurodegenerative diseases are similar to each other"

There is certainly overlap in these heterogeneous neurological disorders.

Parkinson's has atypical variants. ALS is a spectrum that runs from Classic ALS to Frontotemporal Dementia, and there are complexes of Parkinsonism, Dementia and ALS that occur in populations in the western Pacific - and elsewhere I believe.

What I've experienced is that doctors seem to believe their patients don't have the capacity to understand the concepts I presented - they write a prescription or make a recommendation without explaining why. We are not told about the risks of pharmaceutical drugs.

High dose thiamine is a promising therapy, but it cannot stand alone. What I and others needed to understand is the why and how of this therapy. Now we do.

[Gioc in reply to SilentEchoes]

I was lucky to speak the same language as Dr. C. He has always made it clear to me that the main role of B1 was an energetic role. So much so that it is basically used by him to resolve chronic fatigue syndrome. He has always correlated fatigue with the use of b1 for various neurological diseases. On one of my visits I asked him if the b1 worked for Retinitis Pigmentosa, he reported that it was not his field, but he said that if fatigue was present there is a good chance.

I quote again Dr. C apologizing to Rwor for having occupied his conversation: "The biggest group that needs this vitamin lower doses than neurodegenerative diseases is the "chronic fatigue” associated with many inflammatory diseases.

Surely there are a billion people who need to do this therapy and will spend at least 1 euro 2 per day to buy it at Italian prices I talk about the fatigue of multiple sclerosis, fibromyalgia, post fatigue [incomprehensible], fatigue in intestinal diseases, fatigue in the thyroiditis, if you do the calculation quickly consider that 20 percent of women have thyroid disease it is easier to get to the big figure.

As for the impact on diseases, I think this about all the other neurodegenerative diseases: Parkinson's has received a formidable punch from this therapy and will no longer scare any others ... some rare neurodegenerative diseases have had a shot substantial; it is possible that all other neurodegenerative diseases also receive a similar shot.

If you read Professor Reddy that a big scholar of neurodegenerative diseases he does a study on the similarities to say that some are all the same, only the affected system changes ... ". From YT interview.

ncbi.nlm.nih.gov/pubmed/214...

[GymBag]

It is like a thousand watt light bulb was turned on. This pulls it all together. It is not good enough to take Vitamin B1 and 12 it is necessary to change my life style and use the Ketogenic diet (Wahls protocol) . I am buying Dr. Wahls book now.

It is commonly believed and stated that many neurological and other deceases cause Dysautonomia /or autonomic dysfunction . It appears that the reverse may be true and as stated by the World Health Organization is probably an Auto-immune deseace and is caused or made worse by our diet and lifestyle and environment.

[SilentEchoes in reply to GymBag]

❤

[CaseyInsights in reply to GymBag]

So glad so see that you have finally acknowledged the importance of diet in managing neurological diseases

✨👍🏾✨

[GymBag in reply to CaseyInsights]

It is very difficult , all the things I used to like to do , like drive a car, skate , dance etc are gone. Now all the things I most like to eat, gone. My wife makes the very best Spegettie and Lasagna in the world and I am not sure yet if I can eat it and I know a Coke is out, I will give it 100% for two months. I will try. What about donuts ? Coffee is ok right, probably no sugar. It is getting to the point where life is no fun anymore, or maybe I am no fun anymore, and on top of all that it is beginning to appear like it is my fault. Nuts !

Oh I think I can eat them.

[CaseyInsights in reply to GymBag]

I feel your sense of loss for those pleasurable everyday activities that you can no longer do. And I do know that I too will arrive at that point through ‘old age’. We all just need to adapt to what life throws our way.

But the adoption of a new diet, while challenging can be a beautiful thing. Who would have thought that a mix of broccoli, red onions, cauliflower, bell peppers, mushrooms and carrots in cream and cheese sauce, would have graced my plate.

I too have had to adopt to a new diet while also learning to cook in my effort to stabilize my wife’s PD ailment. And I dare say she has come to relish my vegetable heavy meals.

It will take some time to adjust your taste buds but adapt they will.

So onward to the breach dear friend. Onward!

[aspergerian]

See autonomic in:

Neurocardiology: Therapeutic Implications for Cardiovascular Disease.

DS Goldstein 2012.

ncbi.nlm.nih.gov/pmc/articl...