#inappropriate sinus tachycardia

[normal-with-adhd-is-a-joke]

People who are feeling thirsty often or water isn't quenching your thirst with no determinable medical cause:

Get electrolyte drinks.

"Water is the best for hydration" is not always true. "Electrolytes are only for athletes" is not always true. There are a variety of reasons someone might need a boost of electrolytes, like being on a dehydrating medication (i.e. stimulants for ADHD), having a diet lacking in them, or having a condition like POTS or IST.

"but electrolyte drinks are so gross" I'm very aware of that. I refused to drink Gatorade on a missions trip once to the point where I got very ill. I am a committed non-drinker of sports drinks. One I've found that uses sugar as its sweetener, doesn't taste like salt, and also fits my need to not have red dye is the brand Body Armour. A lot of fancy bottled water will also say something like "enhanced with electrolytes", those work too. There's a huge variety of sport drink options so I recommend just finding some with ingredients that sound good and trying them. Your body needs it and you'll probably feel better too.

[zurko48]

I am being so normal about realizing how disabled I truly am (lie)

[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.

[toomanyacronyms]

I think I've made up my mind. I am going to bring up that it feels like my rollator isn't cutting it to my doctor at my next appointment. I'll also bring up an active wheelchair as well. I'll still be using my rollator and my house isn't accessible. However, when I get my own house, I'm going to buy one that can be made accessible.

Also, does anyone feel like they have a mobility aid that doesn't fit with the life they want to lead? That's one of my top issues with my rollator. I hate having to sit for minutes on end when I could be using those minutes to keep doing whatever activity I'm doing at the moment.

[ectogeranium]

People with chronic body illness, how do you cope? I've only been chronically ill for almost a year and I feel so lost, and like there's no end in sight. I miss what normal feels like. I miss the feeling of not feeling. I'll never feel that way again, and that thought is enough to bring me to tears. Will I live a normal length of life? What even is normal anymore? Does it get better? Will I ever be able to truly cope? I've been avoiding accepting that I'm ill this entire time, and I currently feel like I won't ever accept it. It sucks so much. I feel like I'm drowning in a sea of so many emotions. As much as it sucks to admit, but I'm scared. Scared of the day to day. Scared of the future. I need advice. Anything would help.

[arwenthegreat]

It's been a long time since I posted anything, and are we surprised? Not really 😅 Arwen has been a lifesaver, and I think the only thing keeping me from calling her fully trained is her dog excitement! She'll be 3 on November 13th, which I can't really wrap my head around. She's my best girl, and I love her so desperately ❤️

[arithmonym]

they should invent an autonomic nervous system that works

[chronically-fed-up]

when your parents poke fun at how much you sleep and imply you’re lazy knowing about your health problems

[aethling]

anything you can do i can do dizzy

[praublem-child]

I'm so fucking tired man. I was excited for this when we first made it out to Cleveland Clinic. I was hopeful that we'd end up with a quick answer and a solid treatment plan in under 6 months. We're coming up on 10 months since getting out there and it's only getting worse. Now they're checking my kidneys for tumors and I have to get another mri two days after my birthday because they're worried about a fucking pseudotumor in my brain. I've been diagnosed with one heart condition that just,, doesn't have a treatment plan, and they haven't ruled out any others.

I'm just.... Tired. I want this to be over. I want answers and treatment, not more goddamn tests that never seem to give the results that the doctors want or that I need.

[yay-depression]

the chronically ill experience of having either a condition that everyone knows about and therefore they minimize your symptoms or a condition that no one knows about and so they don’t believe you.

[normal-with-adhd-is-a-joke]

I've seen a lot of people self-diagnosing with POTS recently which is very valid but it's worth mentioning that if your tachycardia is seemingly random (not associated with orthostatic changes) it could be a similar but less common condition called Inappropriate Sinus Tachycardia (IST). This is characterized by a heart rate of more than 100bpm at rest with no determinable cause. If you suspect you have IST but have a doctor who isn't a fan of self-diagnosis, I would recommend getting a finger pulse oximeter and taking your heart rate whenever you're feeling ill. Record it in a chart or journal and bring it in to your doctor. There is no cure but there are treatments like medication and reduction or removal of triggers like caffeine. I've also found deep pressure therapy, especially when provided by an animal, to be very helpful but I'm not sure about the science behind that.

[zurko48]

[aelianated-star]

Nothing like almost passing out while peeing to humble you

[toomanyacronyms]

I'm so confused and I think the idea of deconditioning has gotten out of hand.

I've read online that deconditioning usually happens when a person has been bedbound and not able to move for an extended period of time. I have IST which does admittedly share symptoms of deconditioning. But I've been exercising in some way my whole life and still can walk around my house, with symptoms this whole time. I have tried and failed my whole life to decrease my exercise intolerance. I'm still at the same level of exercise intolerance I was 22 years ago. And there's no anything out there for "failure to decrease exercise intolerance".

I've also heard the whole "Cure Dysautonomia with exercise" has been debunked to an extent because the patients were astronauts returning from space and didn't also have a dysfunctioning autonomic nervous system. I know exercise helps some people, this post is for the ones it doesn't help. I'm just tired of feeling like I can't be heard because no one, including doctors, want to believe I have genuinely tried exercise so much growing up. I always stayed at the same level of symptoms no matter how much or how little exercise I've done. If my exercise is doing my Activities of Daily living (ADLs) and technically aren't exercise, so be it.

[shorttrans]

Hey tumblr strangers, I've been having some weird symptoms, and nothing's been diagnosed, but I'm about 70% sure that I have IST. Idk if anyone's going to see this, but if anyone has tips for things that might help on a day to day basis, can you share? Thanks.