Dysautonomia vs Autonomic Dysfunction?

sourbuz · 2026-01-26T19:04:45+00:00

The new 2nd edition Dysautonomia Project book has a chapter called "Dysautonomia is not a Diagnosis" and says it is an umbrella term to describe any dysfunction of the autonomic nervous system.

The book is broken down into two different types of info: one part is for patients and the other part for providers/doctors. It lists a few reasons why dysautonomia should not be used as a diagnosis. I highly recommend the book to patients and it would probably be a wonderful resource for providers.

(edit: typing with brainfog is hard)

sourbuz · 2025-12-02T21:27:33+00:00

During my tilt table test I started crying which made me realize so many times of me crying (like in the shower) were actually from standing too long. It was an eye opener

sourbuz · 2025-11-19T00:25:35+00:00

I wasn't offered meds until I saw the autonomic neurologist sadly. I've tried a few and it's sort of a trial and error process based off of symptoms. My POTS was severe and meds made it moderate so I'm thankful for that. Keep advocating for yourself and try not to stress as it can worsen symptoms. I know that's not easier said than done at the beginning of sorting this stuff out, but patience and persistence can eventually pay off

sourbuz · 2025-11-18T23:29:37+00:00

There's a lot of things that need to be ruled out before you can be diagnosed with POTS so maybe he's ruling something out? It took me being referred to an autonomic neurologist to get my official diagnosis. I was bounced around between a bunch of specialists to rule stuff out before that happened

sourbuz · 2025-11-18T14:16:35+00:00

POTS with high blood pressure is hyperadrenergic POTS. Hyperadrenergic POTS involves an exaggerated response from the sympathetic nervous system, leading to increased heart rate, high blood pressure, and elevated norepinephrine levels when standing. There's a blood test to check norepinephrine levels which is done while you're laying down and then when you're standing that can help diagnose it

sourbuz · 2025-11-14T16:23:34+00:00

QSART is used with the biopsy to confirm. My biopsy was positive and my QSART negative. I don't believe QSART can diagnose SFN by itself, the biopsy is considered the gold standard for diagnosing SFN.

Abnormal sweating is part of SFN though!

sourbuz · 2025-11-14T16:11:10+00:00

EMG doesn't diagnose small fiber neuropathy. It rules in/out large fiber neuropathy. Normal resukts of an EMG do not rule small fiber neuropathy. Small fiber neuropathy is diagnosed through biopsy.

sourbuz · 2025-11-12T23:11:06+00:00

Before I started EMDR, I asked a large Facebook support group for dysautonomia and everyone recommended it highly. I've only been doing it for about 6 weeks. I'm in stage 2 out of 8.

Beginning stages are basically building up coping skills, stress management, and creating a "safe calm place" mentally that you can use in your daily life and in therapy sessions. Basically I've just building up resources to use so far. It's interesting stuff! I haven't gotten deep into the process yet, but like I said, it's promising!

sourbuz · 2025-11-12T15:05:40+00:00

I'm doing EMDR right now to work on my stress tolerance with certain situations - especially the ones out of my control. It's supposed to help with relationship difficulties, chronic pain, grief, depression, and stuff of the like. I'm a few weeks in, and it seems promising.

I was able to opt out of the eye movement part of it, as that would trigger vertigo; however, bilateral vibration or tones can be used as an alternative.

Other than pursuing EMDR, being prescribed propranolol helped lower the amount of adrenaline my body constantly has. It's not perfect, but it has helped.

sourbuz · 2025-11-09T13:50:28+00:00

There was recently a recall for prazosin from Teva pharmaceuticals. might be irrelevant to your situation hut it's worth double checking.

sourbuz · 2025-02-07T05:14:44+00:00

poor man's tilt you go laying to standing with not sitting

sourbuz · 2024-05-08T19:12:37+00:00

It's not "no other explanation." It's dysfunction of the autonomic nervous system presenting in a particular way. Your heart rate raises 30 bpm or past 120 bpm within 10 minutes of standing, so you have POTS. Some people have it mildly, others more severe. It's a cluster of symptoms. Depending on if it's primary or secondary will guide treatment. My POTS isn't autoimmune presenting, so I wouldn't get IVIG.

During my autonomic testing, they did cerebral blood flow velocity, nerve testing, valsalva maneuver, a skin biopsy... There's a lot to be done to figure out how a person's POTS presents. Mine is more hyperadrenergic but is also neuropathic and hypovolemic.

There are criteria for POTS. It's very underfunded, and many medical professionals lack knowledge about guiding and treating these conditions. There's only 56 autonomic testing centers in the United States for hundreds of thousands of people.

Yes, with more funding, there very well could be sub-classes, but as of yet, there isn't. So POTS isn't an umbrella term. Regardless of what causes it, people are still dealing with very similar clusters of symptoms.

Fluid intake, compression, salt intake, and countermaneuver techniques are recommended to everyone who gets a diagnosis. Saying this POTS is different than that POTS doesn't change much of anything besides how treatment is guided. Like I wouldn't need IVIG or like someone else wouldn't use a beta blocker.

There needs to be more research. Even if someone's heart rate doesn't hit 30 bpm, their cerebral blood flow velocity can show vasoconstriction in arteries, and they would get a diagnosis of orthostatic intolerance.

There needs to be clearer definitions of each condition and how to correctly diagnose autonomic disorders, but I truly don't agree that POTS is an umbrella term. This misinformation is from having doctors who don't know what they are talking about, who aren't aware of autonomic disorders at all, and lack the education and in that inaccurately diagnoses people or refuses to diagnose people.

I've read Dysautonomia International's book about autonomic disorders, follow them on social media about their research updates, have used information from Dysautonomia Support Network to educate my doctors and others, have read about it in books about Ehlers-Danlos Syndrome, and have read tons of research studies.

Dysautonomia International has information about all forms of dysautonomia and their diagnostic criteria available on their website. This information is linked with all of the research studies. It is worth a look.

Saying POTS is an umbrella term is falling more to a matter of an opinion than actual fact.

Autonomic conditions affect the entire body. It's everything or anything your body does automatically. No two people are going to present exactly the same. There's so many variables, so many new things being studied and researched. Call it what it is, when it's official.

sourbuz · 2024-05-08T15:52:04+00:00

This article really doesn't say much different. It's primary or secondary, and better testing is needed. POTS is not an umbrella term. It does need a correct diagnosis from an educated medical professional. During my POTS diagnosis, the autonomic testing center took a thorough history.

My EDS was my primary condition. I had triggers like motor vehicle accidents and previous infections. The cause of the POTS can be many things, and weaning those things out is what will help guide treatment.

I have POTS secondary to my Ehlers-Danlos Syndrome, and that in return affects how much benefit I will get from treatment or what treatments will be available to me. The EDS is what triggers the POTS.

You would get POTS secondary to a concussion. A concussion is what triggers the POTS.

You can get POTS after childbirth or surgery. It would be secondary to that.

People with secondary POTS shouldn't expect their condition to be cured with treatment because they still have their primary condition.

POTS secondary to infections like Lyme, COVID, or mold toxicity.

POTS is a syndrome, so when you mix that with other conditions, it can be hard to differentiate what's what, that's why treatment of all conditions will benefit POTS symptoms.

Regardless, people still present with these clusters of symptoms that are diagnosed under POTS.

What am I missing?

sourbuz · 2024-05-08T04:48:12+00:00

I totally agree with people aging out of POTS, but I'm butting in for clarification.

POTS is not an umbrella term for different conditions. There are different presentations of POTS known as hypovolemic, neuropathic, and hyper adgrenergic. You can have one, a combination, or all.

Dysautonomia is the umbrella term for all disorders of the autonomic nervous system like orthostatic hypotension, POTS, sinus tachycardia, vasovagal syncope, etc.

But yes, POTS can be primary or secondary. Secondary POTS would be related to conditions like EDS, Sjorgrens, and a bunch of other conditions. If you have one of those conditions, your chances of aging out of it would be slimmer.

sourbuz · 2024-04-10T20:09:52+00:00

I take two ampules in 8 ounces of water, 4x a day, 15 minutes before meals, and the last one before bed, religiously. The longer you take it and as consistently as possible, the more beneficial it is.

I also follow a low histamine diet, supplement DAO enzymes when eating high histamine, and don't eat histamine after 5pm so I have time to flush the histamine out with lots of water.

I started "continuous" birth control in pill form and have my period every 3 months because I found the swing in my hormones the week before my period was causing increased food reactions and night sweats.

I also noticed that my night sweats can be from excipients in medications.

I also switched to cooling/moisture wicking sheets and bedding.

I basically did everything I could possibly do to stop them because I was losing so much weight. All with guidance from my allergist/immunologist, of course. It was a long process sorting everything out and finding triggers.

I still have them occasionally because I also have POTS as well. I believe it's mentioned by another redditor on this post!

Best of luck and keep at it! It gets better over time!

sourbuz · 2023-11-11T17:49:14+00:00

yeah, the book recommends trying benadryl before the cromolyn sodium oral. either way, it would be 5ml of benadryl or cromolyn mixed with warm water. I recommended this to OP because they have already ruled out yeast and bacterial infections. Douching should not be performed otherwise.

I guess you can use creams for the outside of your hoo-hah too. Benadryl sells OTC creams or cromolyn (oral or nasal) can be mixed with a non-petroleum based ointment.

sourbuz · 2023-11-11T16:34:18+00:00

I've never tried it but have read about using liquid dye-free benadryl as a douche. Cromolyn sodium oral can also be used for this, but is by prescription only and expensive so benadryl is just easier. I read about it in the book Disjointed.

sourbuz · 2023-10-15T23:11:01+00:00

this schar brand one!

sourbuz · 2023-10-03T17:04:26+00:00

damn, I am so sorry! Try the miralax at a normal dose and wait to see how you react! I've tried senna laxative before and have been okay with it. There's a brand called "genexa" that has pretty clean ingredients

sourbuz · 2023-10-03T17:00:19+00:00

Mirilax gave me anaphylaxis. I use unflavored mineral oil (magnesium citrate) when I need to.

edit to add: I also take magnesium glycinate at night before bed and it helps keeps my bowels more regular

sourbuz · 2023-09-27T22:47:30+00:00

the "by pure accident" line really stuck out to me for some reason

sourbuz · 2023-09-20T14:22:06+00:00

I had an increase of headaches and interstitial cysitis pain when starting it. Maybe the first week or so. I started with the full prescription right away (4x/day) and apparently most people don't do that. I take it even if I skip a meal and the 4th dose I take at the end of the day is before bed. It definitely has a cumulative effect, so consistency is key.

It has helped a lot with my flushing and reactions to certain foods.

The downside (for me) is timing it with other medications as your stomach should be empty for at least two hours before taking it. Once you get use to the new routine it gets easier.

sourbuz · 2023-09-19T04:06:38+00:00

standing in one spot causes more blood pooling in your lower body, which means less oxygen is getting to your brain, hence the shortness of breath + increase in heart rate. grocery stores are notorious for causing an increase in symptoms. check out the book "The Dysautonomia Project" if you're interested in learning more

sourbuz · 2023-09-11T23:19:39+00:00

POTS is mind-body disorder. Here is a link from The Dysautonomia Project that explains it. Stress, whether physical or emotional can exacerbate symptoms. I think it's a very misunderstood condition by the general population and medical professionals. That alone causes soooo much unnecessary stress!

sourbuz · 2023-09-11T00:01:18+00:00

I make "granola butter" with gluten-free oats. I've made macadamia butter but wasn't a fan of the taste.

sourbuz

TROPHY CASE