#Orthostatic hypotension

[blueberryflavoredfeelings]

sometimes being upright is simply too much to ask of a girl

[phanbeats]

i see you orthostatic hypotension <3

[whoopsie-doodle]

This is your reminder to clean your emotional support water bottle.

Check the o rings for mold.

[im-lost-in-ikea]

i love floor time (normal blood pressure)

[choixsimple]

Hey you with the chronic hypermobility and/or orthostatic intolerance issues

If you have a menstrual cycle, has anyone told you how it affects your chronic illnesses?

Probably not so I'm gonna!

First here's a basic chart showing the large fluctuation in hormones during your cycle:

If you have hypermobile joints, the level of estrogen in your body will heavily impact the stretchiness of your connective tissue. During ovulation, estrogen has a huge spike, which will make you extra stretchy! You are more prone to injuries, subluxations, dislocations, and general joint issues during this time. There's also a smaller increase in the week before your period, which can also affect joint laxity.

If you have orthostatic issues (or even if you don't, tbh), you'll be interested to hear that both estrogen and progesterone affect your heart rate. Generally your resting heart rate will be higher in the days before your period due to rising progesterone levels, and then drop back to normal after your period starts and progesterone levels fall. Estrogen is also at its lowest level during your period, and with low estrogen levels comes a higher number of heart palpitations and potentially a higher heart rate, depending on the person.

This combo of low estrogen and high (and then low) progesterone, plus the whole bleeding thing, means you're extra susceptible to dizzy spells, presyncope, and fainting in the few days right before your period and the first couple days of your period (and if you have a heavy flow, this can continue longer). It also means you might feel a lot more stable, less dizzy, have less heart palpitations etc around ovulation due to the extra estrogen.

There are a bunch of other bodily functions, chronic illnesses, etc that are affected by hormone levels during our cycles, and there are some good resources online about what these hormones do — I didn't even talk about FSH or LH, the two other big hormones that are part of our cycle! But I didn't want to get too far into the weeds in this post.

PS there's a theory that the reason more AFAB people (even many without a uterus or menstrual cycle, AFAB hormones are Kind Of A Bitch) get diagnosed with things like chronic fatigue syndrome, hypermobile disorders w/chronic pain, POTS etc is because we have a built-in flare up every month (sometimes two, if you flare up at both your period and ovulation). So it's just much more noticeable in AFAB people because AMAB folks don't have to deal with those built-in flare ups every 2-3 weeks.

[over-the-edge-and-never-enough]

Especially the past couple of days. WTF body? Get with the program!

[mandana-the-service-pup]

Sometimes when my low blood pressure or low heart rate is flaring up I get this overwhelming urge to go on a ridiculous adventure.

Like I’m barely able to walk and yet it sounds like the most wonderful thing in the world to cook a feast from scratch, drive an hour to the aquarium or volunteer at an animal shelter for a day. Of course I’m not able to do any of this but it’s tricked me in the past and I’ve ended up in some sticky situations. Now I’m able to recognize when it happens by writing it out or texting Hubbins about it bc it really does sound absurd given my current state. Now when I get the sudden urge to do something that is a lot more intensive than my regular activities I immediately “hit the breaks” and evaluate why I feel that way (and it’s never bc I’m actually feeling better). I think my brain is just desperate for a dopamine hit when it’s not getting enough blood flow.

[snorms]

✨️‼️‼️TO ALL MY DYSAUTONOMIA BUDDIES THIS REN FAIRE SEASON‼️‼️✨️

Remember your electrolytes!

WEAR YOUR COMPRESSION SOCKS IM WATCHING YOU!!

Bring a portable salt shaker for food!

DRINK UR DAMN WATER

Sit down when necessary!

Bring your mobility aid (if u have one) SAY IT WITH ME: MOBILITY. AIDS. DO. NOT. RUIN. OUTFITS!

Have fun at Ren faire!!! U got this!!!

[space-1z-cool]

Happy Dysautonomia Awareness month. To all people with dysautonomia, i hope your dysautonomia makes you less aware of itself this month.

to all chronically ill and disabled people ever, (gives you so many spoons), here. for these trying times.

also i hope ur able to get a treatment plan that works and doctors that listen. o7

[whatshouldwecallchronicillness]

When I meet someone with my condition who is stable and lives a mostly normal life...

[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.

[echoes-in-the-multiverse]

Versión en español:

Made using Canva. Written by Oliver.

Colour palette chosen from Venngage, which provides accessible colour palettes allowing for the inclusion of colour blind users. I hope that the front is also accessible for anyone who comes across it.

[insane-cripplepunk]

My weight does not make

Or take

Or break

Who I am

Who I am is the aches in my knees and feet

My inability to stand up straight

My heart to race

My hairy face

I am not my weight

I am not some medical mystery

Some plot point in your history

Some oddity to whisper me

I am

Me

[thebibliosphere]

Hey I was wondering, I have orthostatic hypotension and get the dizziness when i stand thing sometimes. I was wondering if you knew like, how dangerous that actually is? Obviously Ive spoken to a doctor about it and they aren't worried about my symptoms but it happens semi frequently and I have people asking me if its like, cutting off oxygen to my brain or something or if its just a weird feeling I get and I have no clue how to even look that up and was hoping you or one of your followers might know

I'm sorry your doctor is being dismissive. You don't list a cause, so I'm going to assume your OH is from dysautonomia and not something else. With that in mind, has anyone recommended increasing your fluid and salt intake? What about compression therapy? Those are the very basics of treating OH, so if they're not even recommending that to you, I'd start looking for another doctor.

The mayo has a fairly easy-to-digest article on it if you ever want to link someone to it. Checking out Dysautonomia International could also be helpful for you in finding research and community resources that might be useful to you.

To answer your question, no. It's not harming your brain--though some emerging studies have linked orthostatic hypotension and other types of dysautonomia with an increased risk of stroke and dementia in older patients.

The most significant risk factor from untreated orthostatic hypotension -- apart from how debilitating it can feel-- is that it can make you faint, leading to severe injury depending on how you fall.

My friend is in the hospital with a concussion because she forgot to take her meds, syncoped, and hit her head. Fortunately, she's recovering well, but for what it's worth, her OH is considered mild to moderate, and she's fully medicated and doing all kinds of treatments because her doctors want to improve the quality of her life.

You deserve the same. And I hope you can find a doctor willing to listen to you.

[neuroticboyfriend]

shoutout to POTSies with orthostatic hypertension. we don't get as much attention as our hypotensive peers, and it's harder to know how to take care of and advocate for ourselves because of that.

remember to listen to your body. rest. hydrate. eat. stretch. stay within your limits and dont push it. you don't need to put yourself under more stress. you deal with enough.

[mandana-the-service-pup]

Today I had an appointment with Cardiology. I think the Cardiologist is avoiding me bc the whole time I was under his care his attitude was I’m doing these tests bc your anxious not bc I think there’s something wrong with you and There’s nothing more we can do and it’s not going to kill you. You need to learn to live with your heart problems and be ok with that. So he was kind of flabbergasted when I came back after starting methotrexate and my blood pressure & heart rate were completely normal after years of them progressively getting worse to the point of both being in the 190-200s.

So anyways, he’s been pawning me off on his assistants which is fine with me. At multiple appointments I had mentioned how my low blood pressure was one of my most debilitating symptoms. He never wanted to put me on meds for that bc to him my low blood pressure wasn’t a problem. But it is a problem. It affects my vision. It affects my cognition. It makes it dangerous to drive and impossible to think or accomplish tasks. He literally told me to just drink more water and then talk to his assistants. For two weeks I drank so much water and electrolytes that I was vomiting it up into my mouth when I moved. I ate all the salt I could take and used compression wraps. Nothing helped. I had to set alarms to remind me to take caffeine before driving and make sure I was home before it started to wear off. A few times it wasn’t enough and I had to pull over and wait it out.

So today his assistant finally prescribed me Midodrine. Which is so laughable for anyone in the POTS community bc it’s usually one of the first things drs try (after the water & salt trick 🙄) but I’ve been going to the doctors for POTS symptoms since 2009 and have been disabled by those symptoms since 2014 and this is the first time it was ever an option. I understand that for a while my blood pressure was too high to consider taking Midodrine but I haven’t had high blood pressure since the summer of 2023 and it’s almost 2025 now? It’s ridiculous.

Anyways, I’ll let y’all know how it turns out. It’s a short acting medication that I’m supposed to take three times a day. I took my first dose an hour ago and so far my eyes feel better, I can breathe better and my blood pressure is ideal so I’m taking that as a good sign.