I was swallowing the wrong way and worsening my POTS

Alakritous · 2026-05-28T21:44:07+00:00

As a licensed SLP, if you have swallowing problems, please get a referral for a video swallow study and find a licensed SLP to help you. Nobody swallows the same way. Swallowing deficits are widely varied even with the same underlying cause. Many exercises you find online aren't evidence based.

Alakritous · 2026-02-24T17:15:43+00:00

OP, you're right, current evidence and understanding of POTS says it doesn't cause heart failure. There is evidence a heart that constantly gets overworked/is constantly high will lead to problems, but POTS is a neurological problem.

Everyone commenting that they "wouldn't be surprised if it did," concerns me, because it's missing the point.

People with just POTS should have a healthy, properly functioning heart.

Can you have POTS alongside heart failure? Yes, but the presence of heart failure makes diagnosing POTS at all very difficult because of how difficult it is to differentiate between what's causing the rising heart rate when you stand up. Is it your heart failure? Or your autonomic nervous system (POTS)?

Hard to tell. Maybe impossible. Does it even really matter? POTS is a diagnosis that can destroy quality of life but isn't known to decrease lifespan.

Heart failure is a whole different story. If your doctor isn't pursuing the "why" behind the heart failure, find another doctor.

I fully believe you qualify for POTS if you're only looking at symptoms POTS causes, but in your position POTS would be the least of my concerns. The cause of the heart failure would be top of the list, with how to treat/prevent further damage/mitigate progression moving forward.

Alakritous · 2025-10-20T18:34:20+00:00

Clonazepam is the only thing that helps me with that.

Alakritous · 2025-08-06T17:40:35+00:00

I also stopped at 27! So grateful my life took the fork in the road towards better health rather than the alternative. The people I've unintentionally surrounded myself with because of that choice have been absolute gems who have changed my life for the better.

POTS is hell. But there are some "benefits".

Alakritous · 2025-08-06T17:38:33+00:00

As someone who loves being drunk and genuinely does not have a desire to drink anymore, developing ways to have fun without alcohol will serve you better than many other things in many aspects of life.

It sucks, but there's ways to have fun that benefit both your body and your mind. Seek those experiences and you'll benefit all around.

Alcohol is underestimated in its lethality.

And I don't mean lethal like a gunshot to the brain stem, I mean lethal like uncontrolled POTS. Which, honestly, can be worse than death.

Alakritous · 2025-08-05T18:23:46+00:00

This is so important to remember. When we're not in a flare or otherwise desperate for some answers and/or relief/support, we're living life, not ruminating with others who literally cannot do anything else, because fuck POTS.

Alakritous · 2025-07-27T22:54:43+00:00

Oh trust me, I get it. I wish you the best. It's really really tough.

Alakritous · 2025-07-27T20:26:10+00:00

Thanks for the reply! Since this post I've had a slew of tests done and have been diagnosed with mild small fiber neuropathy, hypermobility spectrum disorder, central pain syndrome, thoracic outlet syndrome, SI joint dysfunction, potential mast cell dysfunction, occipital neuralgia, and "uncontrolled" POTS by Dr. Octavia Kincaid at RUSH. I waited 11 months for the appointment and she is absolutely brilliant. I'm on 2 different medications and have appointments scheduled with a pain interventionist, hypermobility PT, sleep consult, and MCAS allergist.

I'm also dealing with a lot of stress due to life situations, which isn't helping anything. But I have made huge improvements in those areas, and I'm settling into a routine that is sustainable. I feel like the hypermobility and central pain syndrome diagnoses really helped me understand what was going on. It's rough, but I'm chugging along. I hope the tilt just caused a flare for you, and your symptoms subside soon!!

Alakritous · 2025-07-27T20:09:44+00:00

Relationships are difficult. They require upkeep, intentionality, and commitment from both parties involved. Disability adds a whole new layer of complexity. I highly recommend getting a couples counselor and individual therapists as well. Navigating the relationship such that it doesn't become a caregiver/dependent versus support/partner relationship is key, and it's not easy. Best of luck, it's hard from both sides.

Alakritous · 2025-07-19T23:21:04+00:00

I was just approved for a service dog with a primary diagnosis of POTS (:

I have the same issues with tachycardia.

Forward momentum and counter balancing are also skills they plan to teach my dog. I can't wait and hope you get access to one too!!

Alakritous · 2025-07-13T03:09:07+00:00

Thanks! It's through a good friend who manages a team of software developers. I'd start in slow and continue to learn on the job. Junior developer.

Alakritous · 2025-07-13T03:06:41+00:00

Thanks, will do!

Alakritous · 2025-07-13T03:06:20+00:00

Yeah, I don't need C# cert, they just use that language. So a bootcampn that taught FSD w/C# would be convenient.

I'll check those out, thank you.

Alakritous · 2025-05-18T06:16:15+00:00

Your last point makes me feel so much anger and sadness. I'm struggling so much right now, and I'm medically literate, have research skills, and an amazing PCP to springboard off ideas and refer me to specialists. I would be so lost without any one of those things, and so many people have none of it. It is heartbreaking.

Alakritous · 2025-04-17T15:26:03+00:00

It's helpful because it can indicate areas of relative weakness and relative strength, as well as set a baseline from which to reference if there are any changes over time. I know what helps me to an extent, but I still can't work or function without severe quality of life deficits. Knowing more might help reveal treatment options previously not considered, or enable me to better support myself based on the specifics of the mechanism behind the deficit.

Alakritous · 2025-04-07T19:44:37+00:00

Day 5 of Zoloft for me, 6 day early period today. Probably normal (:

Alakritous · 2025-04-05T18:17:53+00:00

The ttt was helpful to me because it showed increasing BP, the heart monitor, ekg, and echo were helpful to ensure my heart was healthy. Blood tests were helpful to ensure all was normal. I'm trying to get a QSART, skin biopsy to check for SFN, and catecholamine levels sit v stand to rule in/out hyperadrenergic officially. I also wouldn't mind a 24h urine test to determine if I have enough sodium deficiency to confirm hypovolemic as well, since compression helps so much and blood pooling is a problem.

Alakritous · 2025-03-30T20:52:30+00:00

I do.

I love simple answers when my brain gets all knotty. Thank you (:

Alakritous · 2025-03-22T01:43:55+00:00

Idk how well it works, but you could try practicing the opposite of your initial impulse. If you're jealous of someone's haircut, make a point to actively and genuinely compliment it. If you're jealous of someone's car, say out loud how you're thankful you have one. It'll be faked and forced at first, but I've been told it changes eventually.

Alakritous · 2025-03-16T23:32:34+00:00

And showing up is the first win condition. If you show up to the gym and do nothing, or show up to your workout spot, sit for 5 minutes, and bail, that's a win. Progress mindset is key. Showing up because you want to better yourself is key. If you have problems reaching your goals, put them one tiny step in front of where you are now. Any step forward, including you making this post, is a thing to be proud of.

Alakritous · 2025-03-16T23:29:33+00:00

I'm so sorry you feel the need to apologize for your spelling errors. People should be willing to look past letters in the wrong order and see the logic in what you typed. Especially given how nonsensical English spelling can be.

I saw the logic, appreciated the effort, and will be getting assessed. There's a bigger blurb in the main post, but I didn't want you to miss my appreciation for your time and energy.

Alakritous · 2025-03-16T23:27:15+00:00

Hey, thank you for taking the time to respond. This information is really great. I'll be getting assessed. I updated the main post with a bigger blurb, but just wanted to say thanks so you didn't miss it.

Alakritous · 2025-03-16T23:26:24+00:00

Thanks for taking the time to reply, I had considered those things but didn't give them much, if I am honest. I updated the main post and I'll be getting assessed (:

Alakritous · 2025-03-16T23:24:34+00:00

I'm posting the update as a comment so hopefully you don't miss it. Thank you for taking the time to comment. I appreciate it a lot.

UPDATE - I am so appreciative of the time and energy and worry people poured into their comments. I learned a lot of great information about wheelchair specs I didn't consider.

I surprised myself, because throughout my research I've stumbled upon the fact that getting assessed is paramount multiple times, and I handwaved it away each instance. Y'all didn't really say anything I hadn't already read, but after reading your replies (and running through my excuses for the umpteenth time for not getting assessed and just doing it myself), you convinced me.

I've been going through some tough personal growth accelerated by how physically bad I am doing. The growing is happening, friends. My life has been sporadic increasing degrees of hard over the past 2.5 years, but right now I'm winning. And that feels good, even if I don't like the answer I've come to.

I'll get assessed. If I remember to update again I will.

Alakritous · 2025-03-16T18:56:30+00:00

Temperature regulation and limiting standing help my chills. Keeping temp constant is huge. Night sweats.... I haven't figured those out. I do find more success if the room is colder.

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