#orthostatic hypotension

[whoopsie-doodle]

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

Check the o rings for mold.

#dysautonomia #wegotdys #neurodivergent #ehlers danlos problems #ehlers danlos zebra #ehlers danlos syndrome #hypermobile ehlers danlos #orthostatic hypotension #pots #postural orthostatic tachycardia syndrome

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

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

#fibromyalgia #chronic pain #spoonie problems #arthritis #chronic illness #chronic illnesses #fibro #chronically ill #orthostatic 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.

#dysautonomia #disability #disabilties #disabled #potsawareness #pots syndrome #inappropriate sinus tachycardia #orthostatic intolerance #postural orthostatic tachycardia syndrome #orthostatic hypotension #vasodilator #vasovagal syncope #neurocardiac #ehlers danlos type 3 #hypermobilty syndrome #pure autonomic failure #PAF #Familial dysautonomia #panysdysautonomia #neurally mediated hypotension #multiple system atrophy #autoimmune #autoimmune autonomic gangliopathy #autonomic #dysfunctionality #accessibleness #accessibility #accessible posts #long covid #covid pandemic

[whatshouldwecallchronicillness]

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

#adrenal insufficiency #Chronic Illness #spoonie #chronic pain #chronic fatigue #Dysautonomia #POTS #postural orthostatic tachycardia syndrome #oi #orthostatic hypotension #syncope #neurocardiogenic syncope

[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.

#chronic health tag #orthostatic hypotension #dysautonomia

[mandana-the-service-pup]

My Rheumatology appointment was great. The dramatic improvement on Methotrexate was the final piece of the puzzle. My Rheumatologist was able to confirm a Spondyloarthritis diagnosis based on my improvement and the X-rays, blood tests, etc. She said my presentation is not typical (probably bc of the EDS & dysautonomia) so Lupus will always need to be on the table and I’m supposed to inform doctors of my increased risk for drug-induced Lupus.

Methotrexate has improved 4-5 years of symptom development but it’s not enough on its own. Hydroxychloroquine and Methotrexate are both dosed based on weight so they can’t be increased. I’m supposed to stay on both medications and use steroids for acute flares (2 pills in the morning every day for a week) If the steroids don’t help then we might move on from Methotrexate to the next DMARD.

I’m so incredibly grateful to finally have a diagnosis that can be treated effectively. I’ve had symptoms my whole life, disabled for the last ten years and have had red flag symptoms for the last several years. To finally have treatment options is such a relief. My Cardiologist follow-up is next week and I can’t wait to finally quell their doubts in me.

#new diagnosis #spondyloarthritis #inflammatory polyarthritis #dysautonomia #orthostatic hypotension #postural orthostatic tachycardia syndrome #gastroparesis #hashimoto thyroiditis #service dogblr #medical alert service dog #health update #rheumatologist #3 years

[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.

#softspoonie #disabled #disability #chronic illness #chronically ill #pots #pots syndrome #postural orthostatic tachycardia syndrome #dysautonomia #orthostatic intolerance #orthostatic hypertension #orthostatic hypotension #physical disability #physically disabled #self care #spoonie

[ithriel]

me: why am i flaring up ?

also me : exercised, forgot to take salt, didn't wear compression socks, forgot to drink water

#pots #potsie #undiagnosed pots #orthostatic intolerance #orthostatic hypotension

[disabledbutchblues]

so far in my journey to understand why i’m always in pain :

• people watched me cry from pain, not being able to keep my eyes open, sweat and hyperventilate after less than 10 minutes on a training bicycle thing, and decided that there was nothing wrong with me at all. even when it took me 15 minutes to be able to sit/stand afterwards because i was about to throw up or pass out

• at least there’s nothing wrong with my heart

• a lady let me talk about why i think i might have heds and why i think i should get tested for it but did not actually listen to anything, looked at some points of the diagnosis (but not everything !!), and decided i was not even hypermobile (i would love to trust her and she might be right but she didn’t do the stuff correctly lmao)

• one doctor says i have orthostatic hypotension. another says i don’t have it. a third says i don’t have it but my tension is naturally quite low (does that mean hypotension or not ??)

• current explanations for my chronic pain that makes me need a cane are : i’m too tense (bc my body is reacting to the pain !), i don’t move enough (bc pain stops me from moving !), it’s psychological, it’s normal pain (???)

• things i should apparently do if i want to get better : do sports, go on a walk every day, do things even if they hurt, not use the lift at uni, not rely too much on my cane, do breathing exercises

#i hate it here #disability vent #disability #physically disabled #chronic pain #cane user #heds #orthostatic hypotension #disabled

[queerpossums]

there are so many books about low sodium cooking. where are the high sodium cookbooks?? i need recipes that improve my symptoms and don’t taste like licking the bottom of an over-chlorinated pool.

#cw diets #tw diet #cw food #low sodium diet #high sodium diet #dash diet #pots syndrome #pots #dysautonomia #orthostatic hypotension #orthostatic intolerance #postural orthostatic tachycardia syndrome #potsawareness #potsie #chronic illness

[autisticmuppeteer]

I’m talking to this girl and we were hanging out the other day and I wasn’t feeling ~great~ physically cause of my chronic illness and she checked in on how I was doing and we ended up talking about my health and she was asking questions about how she could support me if I fainted or was having a flare or something

And like oh my god there has never been something so attractive as someone being respectful and genuinely caring and still showing interest in me and wanting to support me through my disability

#chronic illness #disabled #dysautonomia #disabilty #autonomic dysfunction #orthostatic hypotension #pots #potsie #chronic pain #lesbian #happy pride 🌈 #my pronouns are they/them

[solarianvoidthearoace]

Knocking back those electrolyte/ salt tablets with thrice the recommended dosage because I skimped and didn’t take them daily like I said I would

(Also I sweated on my walk through 9°C (48°F) weather)

#pots syndrome #potsie #electrolytes #orthostatic hypotension #postural hypertension #orthostatic hypertension #postural hypotension #postural orthostatic tachycardia syndrome

[beansprean]

Having orthostatic hypotension is so funny like….oh nooooo you’re telling me I have to wear these sexy knee high socks? 🥺 and put extra salt on my fries?? 🥺 And I shouldn't be doing manual labor??? 🥺

I for one won't stand for it! *stands too quickly, gets dizzy and has to sit back down*

#orthostatic hypotension #orthostatic syncope #personal #not art #i do actually want to do manual labor tho perhaps these sexy socks will help

[echoes-in-the-multiverse]

Versión en español:

Resources used:

Web article

Youtube video

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.

#pots #postural orthostatic tachycardia syndrome #pots syndrome #chronic illness #chronically ill #chronic pain #spanish #mobility aid #disability #did alter #dissociative system #endos dni #Síndrome deTaquicardia postural ortostática #complex dissociative disorder #actually dissociative #dissociative identity disorder #actually system #actually did #traumagenic did #did system #tachycardiac #orthostatic intolerance #orthostatic hypotension #disabilties #disabled #disability aids

[whatshouldwecallchronicillness]

When my exercise tracker watch tells me my stats are unhealthy...

#Dysautonomia #POTS #postural orthostatic tachycardia syndrome #oi #orthostatic hypotension #syncope #neurocardiogenic syncope #adrenal insufficiency

[notyourdramaqueen]

Hot hot girls get presyncope when standing up

#dysautonomia #pots #orthostatic intolerance #orthostatic hypotension #postural orthostatic tachycardia syndrome #postural hypotension #mine