#neurally mediated hypotension

[aelianated-star]

Buckle up folks because this is a long post -

Tips for newly diagnosed dysautonomia patients:

- Drink a lot of water (so much water guys. Especially if you have hypovolemic types of dysautonomia, like hypovolemic POTS, it’s crucial)

- Keep up with electrolytes/ salt intake. Vitassium makes salt pills, chews, and tablets. I personally prefer the tablets because I can just suck on them for a while, but I know a few people who prefer the pills.

- Compression socks help, A LOT! One major component of dysautonomia, in general, is blood pooling (which can greatly increase your risk of fainting). The compression/construction helps blood flow and return back to your heart and brain

- Your disability(s) are valid, even if you don’t pass out/pass out a lot!! Only about 1/3 of people with POTS (one of the most common types of dysautonomia) pass out! And of those, few pass out regularly/daily (such as myself). No matter what, you are valid! Even if you’re undiagnosed, even if your case is “mild”, even if you manage it well without much help; you’re valid!

- Especially for those of you who are just being introduced to disability (likely because of long COVID), it’s okay to grieve the life you used to have/planned to have. You can live a wonderful, full life with these conditions (and other conditions), it just may require more accommodations than you anticipated!

- DONT BE AFRAID TO ACCOMODATE YOURSELF! Seriously, use mobility aids, get a 504/IEP, and make your space(s) accessible to yourself! I use forearm crutches for short distances, but because of how severe my dysautonomia is, I’m reliant on a wheelchair (with someone pushing me/motorized aid) to go more than a couple hundred feet/longer (or anything that requires standing for more than 5-10 minutes).

- Get a pulse oximeter or watch! Certain types of dysautonomia may cause lowered oxygen (hypoxia) because of a lack of available blood. It’s extremely important to monitor this and make sure you’re aware of your oxygen levels!

- Find community! I personally love using “stuff that works”. It not only lets you crowdsource for information about medications or treatments, but lets you message other people with the same condition(s) as you.

- If you feel like something is wrong, please talk to your doctor. I know it’s scary, especially if you have medical trauma/PTSD on top of these conditions, but it can literally be lifesaving. I noticed a sudden uptick in chest pain and casually mentioned it to my doctor. Sure enough, we found I have two types of arrhythmias (p-wave inversion and flutters) Now I’m pushing for genetic testing to see if my diagnosed EDS is vEDS/cvEDS

- Don’t be afraid to start and try medications! I’ve tried numerous medications and haven’t found anything that works quite right yet, but that doesn’t mean I won’t :). And some of you may not need medication! You may be able to manage with lifestyle changes, or IV therapy, which is great! Do what works FOR YOU. Everyone is different!

- Rest days are productive! Your body is working really hard to keep you alive, it’s okay to take a break! Take care of yourself, really, it’s okay to conserve spoons.

[bamfspock]

Story time:

The first time I fainted was in 2012, which is impressive when I've had autonomic hypotension since 1988 (bc rheumatic fever being super rare =/= no one getting it, as 4 yo me learned the hard way lol). It was a hot day, I'd been walking around with a friend outside, and then we went to an ice cream shop as one does on hot days.

There was, of course, a long line - wait time was about 15 minutes. So there I am, overheated, on my feet with little movement...didn't take long to start getting woozy. Usually when this happens I'll say 'fuck it' and sit wherever I am - I've even sat on the floor of NYC subway cars, because better to get whatever nastiness is there on my jeans instead of on my face when I faint - but for some reason I tried to tough it out this time (stubbornness the reason was stubbornness).

By the time my friend and I have our ice cream in hand and are at the till, my vision is fuzzing white and my sense of hearing is halved and my face is numb and I'm just feeling pretty ass overall. I tell my friend quick that I don't feel well, and could he pay for me for now so I can go sit, and he's like yeah of course and nabs me a bottle of cold water too 'cause he's a mensch.

So I go outside, water in one hand, cup of ice cream in the other, and start heading for the starbucks next door that has an outdoor seating area. At this point I can't hear my footsteps and can barely see, but I'm just a few feet away now, I'm gonna make it, it's fine.

This is when my right hand checks out and the bottle of water drops onto the sidewalk. It immediately starts rolling towards the street, and without thinking I automatically lean down to grab it. I miss, of course, because my coordination is shot, and from the corner of my eye I see my friend trot past me to get it, and then I take metaphorical leave of my senses and think 'oh he's got it' and stand.

Fade to black.

I come to starfished on the sidewalk, my friend hovering over me, looking and sounding freaked out. He offers to help me up and I manage to mumble something about how if I try to move right then I'm gonna pass out again. So he's waiting, continuing to freak out, and I'm lying there, dazed and trying to figure out if I hit my head (I didn't, which was very lucky) and generally waiting for feeling to return to my body so I can figure out what I *did* hurt, and this is when I notice it.

It takes a couple tries, but I roll my head to the side, towards where my left arm and hand are hanging off the curb.

There, in my left hand, is my ice cream, still gripped tight and 100% intact.

And oh man was I excited. I was giddy with oxygen starvation, and something cold and sweet was like mana from heaven with how shit I felt in the aftermath, and anyway to this day I tell people this story all the time because somehow even when my brain blue screened and my whole body went limp something somewhere deep inside me knew I better not fucking drop the fucking ice cream.

[Bonus: my second and last time fainting was during my tilt table test. It was just shy of the 10-minute mark, and my bp was 32/24, which explains why I can get such gnarly presyncope all the time but rarely faint.]

[dissociacrip]

it's dysautonomia awareness month 💙 and while what i have (POTS & NCS) are common conditions, here are some things i feel don't get talked about enough

(NCS = neurocardiogenic syncope; it's sometimes also called vasovagal syncope, vasodepressor syncope, reflex syncope, and neurally-mediated syncope)

disclaimer - i'm a layperson, if any of this information is actually incorrect please let me know ASAP!

1. coathanger pain

coathanger pain is a symptom associated with orthostatic intolerance in general, not just POTS, but it also has yet to be extensively studied/fully understood

it's called "coathanger pain" as it occurs in a "coathanger" shape affecting the base of the neck and spreading into the upper back and shoulders, in my experience it's a searing pain that's simultaneously icy (like the icy-hot sensation you might get when sticking your hand in front of a hot tub jet) and becomes excruciatingly painful the longer i'm upright, it's also been described as a charley-horse sensation

the theory behind it is lack of sufficient oxygenated blood flow to the muscles in the upper body; without enough oxygen, muscle cells use fermentation to produce ATP, which triggers the production and buildup of lactic acid, causing progressively worsening pain

this likely happens because the autonomic mechanisms implicated in POTS and other forms of Ol fail to adequately counteract blood pooling in the legs and feet against the pull of gravity, resulting in decreased blood flow to the upper body

2. POTS is a heterogenous syndrome

what defines POTS is an HR increase of at least 30bpm in response to postural change (getting into a standing position), typically in the absence of orthostatic hypotension, which is something that can happen for a variety of reasons

idiopathic/primary (where the case isn't known) POTS is not uncommon, but not all cases of POTS are idiopathic and are instead secondary to another condition, such as those that involve damage to the peripheral nerves (e.g. diabetes and diabetic neuropathy)

some people recover from POTS if the underlying issue can be resolved, but in many cases it either can't or the underlying issue is unknown

there are "types" of POTS (hyperandrenegic, hypovolemic, neuropathic) but these aren't distinct subtypes so much as mechanisms that can be involved, which means some people can experience multiple

this also means that POTS has a wide range of presentations: some people may recover, some people will have mostly steady impairment with more of a relapse-remission pattern based on various factors, and some people become sicker over time if the underlying cause is progressive

3. how "pre-syncope" works

syncope = fainting

pre-syncope = symptoms that lead up to fainting/the "podrome" of syncope (e.g. lightheadedness, sweating, stomach discomfort, etc.)

"pre-syncope" is generally used to refer to the cluster of symptoms one experiences as a result of POTS regardless of whether they actually lead fainting, not everyone with POTS is considered a faint risk

personally i am a faint risk but i usually only faint due to exacerbating circumstances (hypotension triggered by heat or lack of food, etc.) & not necessarily POTS by itself (i usually have NCS in response to getting blood drawn)

i can usually tell i'm actually going to faint based on tells like profuse sweating and the gross feeling in my stomach, but for example i can be on my feet for hours with progressively worsening ataxia that never lead to me blacking out (assuming that's due to my POTS and not something else Imao, the jury is still out on that one)

other people experience a similar situation where their symptoms are still considered "pre-syncope" even if they never lead up to actual syncope

4. convulsive syncope

convulsive syncope is a "type" of faint episode that can externally resemble a seizure due to jerking body movements, but isn't actually a seizure (it's also different from PNES)

unlike seizures, convulsive syncope is usually very short-lived (usually less than 1 minute) and has rapid recovery once adequate blood flow to the brain restored, however - while i'm no expert - i think it's fair to say if you think someone is having a seizure it's better to assume that's the case & respond appropriately

faint episodes (convulsive or no) can still be a pretty serious thing due to the risk of bodily injury, especially TBI

sources/further reading

about POTS (dysautonomia international)

coathanger pain (the dysautonomia project)

convulsive syncope (medlink)

[longhaulerbear]

These findings presented recently at the 33rd annual meeting of the American Autonomic Society highlight a novel imaging protocol to demonstrate that in this patient with PAF, orthostatic intolerance was driven by a reduction in cardiac output and baroreflex impairment, resulting in reduced cerebral hypoperfusion. The authors emphasize the importance of estimating vessel diameter when evaluating cerebral hypoperfusion. Absolute MCA flow, calculated from MR sequenced flow velocity and vessel diameter, revealed a total blood flow reduction of 37.6% with LBNP challenge, compared to a slightly greater estimate of 42.5% reduction without taking vessel diameter into account.

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Orthostatic hypotension in long-COVID: POTS first, then OH

The results of this study indicate that the incidence of post-COVID POTS decreases over time and is replaced with participants who had normHRBP or OH. The authors hypothesize that the reduction in the frequency of POTS over time could be due to a decrease in catecholamine production by cytokine-producing immune cells [4]. OH was not present in participants with a disease duration of less than 12 months but was seen in about 1/4 of participants with a disease duration greater than 18 months. To our knowledge, this is the first study to report that OH becomes more frequent when PASC duration exceeds 12 months. The reduction in CBF during tilt in participants with post-COVID POTS (36%) was greater than previously reported in healthy volunteers (7%) [5]. Cerebral blood flow reduction may cause some of the orthostatic symptom burden seen in post-COVID POST including brain fog.

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Autonomic fibers replace somatic nerve fibers

Whole mount staining of the denervated muscles revealed thin nerve fibers suggestive of ingrown axons. Using anti-choline acetyltransferase staining, a specific marker for cholinergic axons, the authors found that the denervated fibers were primarily parasympathetic. Muscle fiber composition in the denervating muscle changed from a mix of IIa, and IIb fibers to purely IIa fibers. Intramuscular injection with an appropriate tracer into the denervated muscle revealed no fluorescent signal in the brainstem, excluding the possibility of apparent somatic reinnervation, however, signal was noted in the pterygopalatine ganglion, confirming the parasympathetic fiber innervation. Finally, parasympathetic innervation was also studied by electrophysiological stimulation. Stimulation of the infraorbital nerve revealed whisker movement on the affected side.

[sixwheelriker]

Returning to consciousness at the end of my tilt table test:

[id: still from Avengers: Endgame of Scott Lang in his Ant-Man suit, saying "somebody peed my pants"]

[thefriedbird]

Internalized Ableism is a cunt...

I had to wear a heart halter for an entire day, about a week ago I believe.

I went to see my results and the sinus rhythm was normal.

For the past half hour, I’ve been barraging myself with “Maybe my family is right in saying I’m a hypochondriac” and “Maybe my symptoms are just fake.”

But no, it just means I gotta keep pushing to figure this out.

I know my symptoms are real, I’ve experienced them. It’s finding out what it is that will be a kicker.

The day I saw my cardiologist he said it could be NMS or what used to be called NMH.

Couple of people have brought up POTS.

However, I just feel like I’m going crazy. What could this mean?

I experience the fluctuations in blood pressure, I know I experience increases in my heart rate, I know I get dizzy, I know I get lightheaded, I know I experience pre-syncope.

This is why we don’t stop.

Even if our mind is against us.

We HAVE to keep pushing.

To all my disabled friends who experience the same issue, you are not alone. I believe a majority of us have dealt with the same thing.

You just gotta remember your symptoms are valid, you are valid, and your concerns are ALL VALID.

We can do this.

[lesbianofthelake]

brain fog??

Do any of you guys ever have brain fog where you like... can't see properly? I don't mean actual visual problems, just like your brain can't process what it sees? I was at a restaurant yesterday and there were lights and lots of colpurs amd people moving and it just felt like my brain couldn't deal with it and I got really disoriented. Anyone?

[humansofdysautonomia]

Hi everyone! October is Dysautonomia Awareness Month so I've decided to start this project to feature the stories of people whose lives have been affected by dysautonomia. It’s facebook page can be found here:  facebook.com/humansofdysautonomia  I hope to get the project off the ground soon, but in the meantime, anyone who has a dysautonomia diagnosis and is interested in helping to get this project started should send me a message and introduce themselves!  

[kaoticspoonie]

Also if you are having a lot of issues similar to pots and your heart rate isn't acting up (as much) look into neurally mediated hypotension. If you have a doc/cardio ask for a tilt table test.

Also my suggestion is to leave Powerade, liquid IV or similar packets, potato chips, and other salty yummy things near wherever you tend to hang out.

I keep little hydration and snack stashes near my bed, near my sewing station, and near my couch.

I swear to god having a sodium issue and a memory issue is sometimes like ‘I feel like I’m dying and I don’t know why, why is my heart beating this hard, I’m sweating oh god I’m sweating I think I might be dying’

and then I have some canned chicken noodle soup and it’s like I can actively feel a health meter filling.

[kaoticspoonie]

Well then.

[icrants]

Update

So update on my life. I had a pudendal nerve injection to numb my pudendal nerve which numbed it for the first day but then the pain came back and worse. So my urogynecologist has given up on me and sent me to a pelvic pain specialist. He did some tests and stuck his finger up my ass and said I have one of the tightest pelvic floors he’s ever seen and that I need a botox injection and another pudendal nerve block immediately in order to get any relief. So I was really happy with that appointment because he actually gave me answers and a solution. He made me feel very optimistic that I can get better which I haven’t felt hopeful in a very very long time. So my next step is getting the botox and I will update y’all on how that works out for me. I also will probably buy one of those pelvic floor cushions because I sat on one in his office and it was the most amazing feeling in the world to not have pressure on my pelvis and he said I need one of those which will be awkward to take with me to college and stuff but it’s worth it and I’ve gotten a lot better about not being ashamed about this stuff. So much better that I’m currently writing an article about all this for Charity pulse, which the wonderful Chyler Leigh is letting me write in order to spread awareness about this. So stay tuned for more things thats all for now folks.

[nooneandeveryone]

The Raccoon Eyes Rule

For some syndromes, illnesses and disabilities, risking burn-out is risking a trip to the hospital. For myself, I have several issues, but this mostly relates to my CFS/ME. When you have chronic problems with energy, it can be very very difficult to know when you're pushing yourself too hard. My default energy level is so low, I'm used to pushing through it just to get basic daily tasks done. So, how can I know when to stop? For a long time, I had no idea and this ended badly; we're talking bed-ridden for a least a week because I pushed to hard ONE day.

So, the raccoon eyes rule. To be fair, I always have some level of bags or dark circles. So, we're talking severity here, not whether or not they exist. Because the only time I don't have them is with make-up.

The rule goes like this, if I have raccoon eyes, I'm not allowed to push myself beyond necessities (i. e. meals, basic daily chores, hygiene.) for that day. Now, ideally, you have a second person you can ask if you have raccoon eyes. Since I've found this more reliable than looking myself plus if you have any body dysphoria you really don't want to check the mirror. Barring that, take your finger tips and feel. One major give away, for me, is my eyelids will feel... tacky. Even after washing my face. Another dead give away, if you've been awake for a few hours, and find you still have sleep in your eyes... yeah it's time to take it easy.

All of this is to say... you saw that art I got done the other day? Yeah. I'm paying for it.

Give it Another Day Rule

After recovering from being sick or excessive exhaustion, it's very very tempting to get back to work as soon as you feel better. Again, this can end badly. I have prolonged having the flu by doing too much the moment I feel the slightest bit better.

The biggest issue I have, is disconnecting the idea that eating enough will give me enough energy. It is unfortunately not true with my conditions. My body isn't able to process food into energy efficiently. Eating will give me some energy but not the same level as someone with a healthy body. I will run out of resources quickly. The temptation is to just eat more just to boost myself but that really only results in increasing my weight. Since my body isn't good with processing food, it'll just send it to be fat or put it on the fast track out of my system.

So, you give it one more day.

extra health rambling below

Now, related to the issues with food. I've had to put myself on a strict eating schedule. If I don't eat at regular intervals, it can bring the whole delicate balance down and I'll crash. It's very similar to being diabetic... without being diabetic. This confuses my doctors to no end, btw. The crashes are caused by my blood pressure and blood volume. My nervous system freaks out and sends the opposite signals to the veins in my legs. So then my entire blood volume collects in my legs instead of being pushed back to the heart. This is combated by compression stockings, a high liquid and sodium diet. So basically, if I don't get enough salt... I crash.

So, my version of a healthy meals is very different from the popular view of healthy. My meals are usually a serving of protein(meat or tofu), lots of salted veggies and potato or rice(just to drive home the irish and japanese ancestry in this house). Ramen, is considered a rescue meal. If my blood pressure just wants to crash, we're having a ramen lunch. I might add some veggies but it depends on how bad the crash is. Either way, I'm drinking the broth.

I've cut down on my processed sugars, mostly to keep that from messing with my blood pressure problems. No need to add diabetic to the hot mess. I still have sugar but it's not always a daily thing. I sorta have this sugar allowance, which is best summed up with a one donut limit. one donut means no ice cream or cookies that day. I don't eat donuts daily btw, it's just the ball park for the max amount of sugar.

Back to salt though. Gatoraid and poweraide is always stocked. I favor the sugar free stuff obviously(also when you have invisalign, no sugary drinks while they're in your mouth which is 22 hrs a day). Peanuts and pumpkin seeds are also good to have on hand.

My blood pressure problem was originally diagnosed as Neurally Mediated Hypotension but these days it would be diagnosed as Postural orthostatic tachycardia syndrome (POTS). It sucks pretty hard either way. It's led me to having to be on beta-blockers because my heart was working too hard to compensate. And as I mentioned, compression stockings. They are a must if I want to do anything active, even just going to the store. But at least they make my legs look amazing.

I am not a 'healthy' person. And I only spoke about two of my diagnosed problems. Not even mentioning the learning disabilities, PTSD, anxiety disorder and major depressive disorder. They're a whole different post to themselves.

[sixwheelriker]

And everytime some "well meaning" ableist tells me to try [insert fad exercise here], or [insert fad diet here], and I can shut them down by telling them my doctors advise reducing activity and that exercise is contraindicated for my M.E., and my doctors have me on a specific diet that does not allow those foods ..... ahhh, that's good stuff.

"But what will you do about heart health if you can't exercise?!?!" look, Harold, if I get to choose between a bearable 30 years that ends in cardiac arrest or a miserable 15 years that ends with me in a facility having been 'locked-in' for at least 5 of those, I'm gonna say Fuck Heart Health and shoot for my best bet. Sometimes there is no healthy choice, now take your fitbit and fuck off 🎉

Tales from a Salt Vampire (2)

There are many, many days that I get very angry at the shit my body pulls. But sometimes, I take joy in really simple, stupid stuff.

Like the fact that now, after 15+ years of being told to stop adding salt to your food you’re gonna get high blood pressure…I can

ADD AS MUCH FUCKING SALT AS I WANT.

There is nothing quite as satisfying as sitting down and adding a shit ton of salt to my food and knowing that nobody can say anything about it because this is literally what my doctor told me to do, Karen.

[sixwheelriker]

I've gotten to the point in my Medical Mystery Tour where doctors have started telling me we have to take conservative approaches to treatment because my health "is very, ah.... complicated". Like a euphamism to explain why they're breaking up with me. Like c'mon, we all know the deal, there's no need for careful wording, just say "it's a dumpster fire" and be done with it,

[thefriedbird]

Lol anybody else who suffer from any form of Dysautonomia suffer like an immediate pain through the head or literally feel a sensation shoot up their body?

[lesbianofthelake]

Hypotension + vaccine reactions?

I was wondering, have any of my fellow dysautonomics had a weird reaction to a tetanus shot, or any immunisation really? I've had it before (before I got sick), and had no reaction, but this time I felt like I was going to faint almost immediately, and it lasted for about ten minutes while lying down. I also had brief nausea and hot flushes, similar to what I experienced on the tilt table, and a really weird tingling in my hands. I’m curious to see if anyone else has had a similar reaction?