Poll

Do you show symptoms of Dysautonomia?

Yes but only in POIS
5 (17.9%)
Yes but only outside of POIS
0 (0%)
Yes both in and outside of POIS
13 (46.4%)
No
5 (17.9%)
I'm not sure
5 (17.9%)

Total Members Voted: 28

Author Topic: Dysautonomia  (Read 2682 times)

Muon

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Dysautonomia
« on: November 07, 2019, 08:25:24 AM »
Join Muon's cozy poll corner, this time about dysautonomia. Like and subscribe!
« Last Edit: January 28, 2020, 08:34:37 AM by Muon »

Muon

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« Last Edit: December 23, 2019, 08:03:53 PM by Muon »

Disaster

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Re: Poll: Dysautonomia
« Reply #2 on: December 30, 2019, 08:04:00 PM »
This is an interesting poll because I have had major Dysautonomia for the last 13 years but I have had POIS over 30 years now. I never read of anyone complaining about true Dysautonomia on the forum or on the Facebook group. Have Hyperadrenergic postural orthostatic tachycardia syndrome (Hyper POTS for short), I also have Delayed Orthostatic Hypotension (OH) and Inappropriate Sinus Tachycardia (IST). Along with gastromotility delays and dumping. There are a handful of different types of Dysautonomia and they are tested and treated differently.  I won?t go into detail about what each of mine mean but Dinet.org has a good informative website and forum about various types and a good physician list to get tested. The main test for most starts with a Tilt Table test to see how your heart rate and blood pressure differ when you are slowly raised from flat to head up position.  The Hyperadrenergic part means that during the tilt table test they measured my neurotransmitters/ catecholamines and found that Noradrenaline/norepinephrine was high upon standing. At this point I am an expert of Dysautonomia, not by choice and not bragging about it, but I know more than most doctors about it because I have read thousands of pages on it and watched lectures at conferences. I was only diagnosed in 2011, 8.5 years ago, I figured it out by accident and then went to an expert on that physician list who tested me to confirm it.

I think my POIS caused my Dysautonomia possibly because my spine is involved in my POIS and a lot of Autonomic nerves branch off from the spine. Or it could be from a hormonal or autoimmune reason because I have another autoimmune diagnosis which is known to cause Dysautonomia. But really any illness, can cause Dysautonomia because the autonomic nerves are located in connective tissues and almost every illness can affect connective tissue.

Also after orgasm all of my veins get extremely dialated or relaxed and all my veins pop out for hours afterward.

I do not believe that a majority of us have this connection and I do not believe the theories of Dysautonomia causing POIS.
POIS sufferer for over 3 decades. Has progressively gotten worse over the years and I became completely disabled around 2011. My case of POIS is very severe.

Muon

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Re: Poll: Dysautonomia
« Reply #3 on: December 30, 2019, 08:39:10 PM »
Disaster did you ever had or come close to some sort of attack? I had a few near attacks in the past upon certain triggers. It felt like I was on the brink of some kind of gagging attack, I could prevent escalation by laying flat on the floor.

Disaster

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Re: Poll: Dysautonomia
« Reply #4 on: December 30, 2019, 09:06:41 PM »
Do you mean like a panic attack? Those are common with POTS because adrenaline is so high that the heart races and we get bad heart palpitations. Before I knew I had POTS they were extremely scary. Once I knew I had POTS I monitored my heart rate to make sure I never over did it. But that means I can?t walk or stand for more than a few minutes. Sitting also raises my heart rate. My laying heart rate is between 80-110 depending on how I am feeling. Usually on the high side the next few days after POIS. And when I sit it goes up to 110-145 and when I stand it goes to 150-190. POTS is an increase of over 30 beats a minutes from laying flat to standing. Mine increases about 60+. Like I said I rarely get those ?attacks? anymore because I have a always on wrist heart monitor or a finger pulseOx monitor so I will sit or lay before it is triggered. Usually being very weak or having an infection triggers it now. But being too hot or too cold can also trigger it.
POIS sufferer for over 3 decades. Has progressively gotten worse over the years and I became completely disabled around 2011. My case of POIS is very severe.

Muon

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Re: Poll: Dysautonomia
« Reply #5 on: December 30, 2019, 09:23:02 PM »
No not a panic attack it's something else. I don't know what it was because I could prevent it right on time. I suspect it was closer to a potential epileptic seizure from a lack of blood flow to the brain, but this is a wild guess.

Disaster

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Re: Poll: Dysautonomia
« Reply #6 on: December 30, 2019, 09:27:22 PM »
No not a panic attack it's something else. I don't know what it was because I could prevent it right on time. I suspect it was closer to a potential epileptic seizure from a lack of blood flow to the brain, but this is a wild guess.

Never had anything like that. That is not a typical Dysautonomia symptom either. People who have Neurocardiogenic genic syncope or Orthostatic Hypotension can have low blood pressure and this can manifest in low inter-cranial blood pressure and that can cause seizure like symptoms. But it is highly unusual..
POIS sufferer for over 3 decades. Has progressively gotten worse over the years and I became completely disabled around 2011. My case of POIS is very severe.

Nas

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Re: Poll: Dysautonomia
« Reply #7 on: December 30, 2019, 09:29:14 PM »
No not a panic attack it's something else. I don't know what it was because I could prevent it right on time. I suspect it was closer to a potential epileptic seizure from a lack of blood flow to the brain, but this is a wild guess.
Do you loose sight temporarily and get a buzzing sound in your ears?

Muon

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Re: Poll: Dysautonomia
« Reply #8 on: December 30, 2019, 09:31:44 PM »
So what medicine is beneficial to your POTS Disaster?

No not a panic attack it's something else. I don't know what it was because I could prevent it right on time. I suspect it was closer to a potential epileptic seizure from a lack of blood flow to the brain, but this is a wild guess.
Do you loose sight temporarily and get a buzzing sound in your ears?
No but I already started to feel an urge to gag, there was an extreme tension build up in my throat. I had this once at a very high summer temperature and a few times at sudden temperature changes going from the inside of my living placce to the outside in winter dropping garbage into the bin which was placed outside my appartment.
« Last Edit: December 30, 2019, 09:38:08 PM by Muon »

Disaster

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Re: Poll: Dysautonomia
« Reply #9 on: December 30, 2019, 09:41:41 PM »
So what medicine is beneficial to your POTS Disaster?

No not a panic attack it's something else. I don't know what it was because I could prevent it right on time. I suspect it was closer to a potential epileptic seizure from a lack of blood flow to the brain, but this is a wild guess.
Do you loose sight temporarily and get a buzzing sound in your ears?
No but I already started to feel an urge to gag, there was an extreme tension build up in my throat. I had this once at a very high summer temperature and a few times at sudden temperature changes going from the inside of my living placce to the outside in winter dropping garbage into the bin which was placed outside my appartment.

Again these are not Dysautonomia symptoms. Go read Dinet.org
POIS sufferer for over 3 decades. Has progressively gotten worse over the years and I became completely disabled around 2011. My case of POIS is very severe.

Muon

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Re: Poll: Dysautonomia
« Reply #10 on: December 30, 2019, 09:59:55 PM »
Again these are not Dysautonomia symptoms. Go read Dinet.org
I'm aware of Dysautonomia symptoms I got POTS myself. I was going a bit off-topic with that symptom I guess, sorry for that. It's such a rare weird symptom and I don't encounter many people with POTS on this forum so I was just polling inside a poll.

Oh and btw my brother who has POIS also shows Dysautonomia symptoms. Sweating for now apparent reason etc.
« Last Edit: December 30, 2019, 10:07:12 PM by Muon »

Disaster

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Re: Poll: Dysautonomia
« Reply #11 on: December 30, 2019, 11:49:12 PM »
Again these are not Dysautonomia symptoms. Go read Dinet.org
I'm aware of Dysautonomia symptoms I got POTS myself. I was going a bit off-topic with that symptom I guess, sorry for that. It's such a rare weird symptom and I don't encounter many people with POTS on this forum so I was just polling inside a poll.

Oh and btw my brother who has POIS also shows Dysautonomia symptoms. Sweating for now apparent reason etc.

I think you should keep this discussion about Dysautonomia and you can message me privately about off topic things. What symptom do you have from POTS? What tests did you have for it?
POIS sufferer for over 3 decades. Has progressively gotten worse over the years and I became completely disabled around 2011. My case of POIS is very severe.

Muon

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Re: Poll: Dysautonomia
« Reply #12 on: December 31, 2019, 05:58:00 AM »
What symptom do you have from POTS? What tests did you have for it?
There are many symptoms, I won't go into detail here (walls of text), maybe later. I will post them in my thread eventually bit by bit, I haven't gotten around doing so yet. Some snippets: HR  change > 30 BPM upon standing and it slowly keeps rising over time while standing, it doesn't stabilize it just stays in tachycardia mode (i recovered from this over the years and now it does stabilize again). Decreased GI motility. Decreased digestion. Frequent urination. Not able to sweat when needed or sweating while you are cold and more.

I measured my HR and BP between supine and standing position and showed it to a POTS specialist at an academic hospital and he said it was clear to him this was POTS and diagnosed me with POTS without ever doing an additional table tilt test (also because I can't replicate the measurements during winter season, symptoms would tone down). I had periods in the past where the slightest head tilt gave me major symptoms. I think it all boils down to a mast cell disorder which is fooling everyone around here doctors included.
« Last Edit: December 31, 2019, 08:15:49 AM by Muon »

berlin1984

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Re: Poll: Dysautonomia
« Reply #13 on: September 07, 2020, 02:45:23 PM »
(also because I can't replicate the measurements during winter season, symptoms would tone down)

Less sweating -> less water lost, less minerals lost?

(I'm probably making this too simple because there is other factors involved too...)

Muon

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Re: Dysautonomia
« Reply #14 on: October 06, 2020, 03:34:00 PM »
POTS, what helps:
https://www.dinet.org/info/pots/pots-what-helps-r100/

Brain activity:
Anatomy and Physiology of Erection, Ejaculation, and Orgasm

"While these are similar between genders, in men there is additional activation in the periaqueductal gray matter."

https://en.wikipedia.org/wiki/Periaqueductal_gray

"The periaqueductal gray (PAG, also known as the central gray) is a nucleus that plays a critical role in autonomic function"
« Last Edit: October 09, 2020, 11:40:49 AM by Muon »

berlin1984

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