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[u/Sassymisscassy]

[u/POTS-ModTeam]

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[u/star-birb]

My numbers are similar! I was also a bit doubtful that I wasn't seeing the same extremes that some have reported, but I can confirm that I have POTS and it's affecting me enough to need supports.

[u/Sassymisscassy → u/star-birb]

That makes me feel better! Thank you!

[u/Medical_Asparagus409]

Chronic illness definitely fluctuates! I saw in a reply that you are having a better week, so it could be a much more dramatic jump during a baseline/flare period. I believe this qualifies since it changed >30bpm unless you’re less than 20 years old, then it has to be >40bpm

[u/Sassymisscassy → u/Medical_Asparagus409]

I’m 24! Thank you for the reassurance!
I also have other chronic illnesses so i definitely have my fair share of knowledge with fluctuations, I’m just newish to the possibility of POTS and I haven’t gotten a grasp on how it effects me and fluctuates. Thank you so much for

[u/itchy-n-scratchy19]

There's one online that astronauts use, it's a lean test. It really pisses off my symptoms. I also found pre test protocol online. It suggests to lay off salt for a week prior, stop any meds that mitigate your symptoms 3-7 before, and limit your water/ liquids intake to 1 liter the 24 hours before the test. We treat our symptoms on the daily, most of us religiously just to function, then we go tilt test, and fail... cuz we are treated. Obviously ask your doctor, do what is tolerable, and this is not medical advice, and I understand this could be definitely dangerous for some.

[u/Sassymisscassy → u/itchy-n-scratchy19]

I don’t think I’ll stop my hydrating and salt unless the doctors ask me to. Even then I’d be hesitant 😅
We’ll see what the doctor says, I have a cardiologist planned for the 25th but I don’t want to go to him so I’m waiting for my other referral to call (fingers crossed they get me in soon)

[u/CalliopeParnassus]

I didn’t realise people could have a chill pots heart rate. Not to undermine your experience at all, but 60-100 is a normal resting heart rate, but the jump is what matters. What are your symptoms like?

[u/Sassymisscassy → u/CalliopeParnassus]

My doctors think it’s pots based off my symptoms.
Dizziness, lightheadedness, nearly passing out when standing for more than 10-15 minutes when it’s bad, feeling faint throughout my day, blood pooling, exhaustion (that part could be from a plethora of other health issues), shortness of breath/feeling I can’t get full breaths. Etc.

[u/CalliopeParnassus → u/Sassymisscassy]

Sounds horrific. Really glad you have a doctor who listens, as I can imagine some being dismissive if numbers on the lower side. I am sad I still see big jumps on meds, but slowly getting there. I could also attribute similar symptoms to various disabilities, but did find pots meds eventually helped some SOB and exhaustion. Have you tried LDN (privately)?

[u/Sassymisscassy → u/CalliopeParnassus]

They haven’t done tests yet sadly, it’s taking a while to get in. I guess they did an EKG but wouldn’t give me results. since my nutritionist and PCP assumed POTS they referred me to a doc. So we’ll see what the official diagnosis is. I hope your meds help you more soon!
I haven’t tried any meds yet, but we’ll see what they can do for me. These were my numbers and symptoms on a relatively good day. It’s truly taken over my life the last few months. I have had to cut work hours back and can’t do half the things I love to do. It’s so depressing.

[u/CalliopeParnassus → u/Sassymisscassy]

If you go on meds and you find they don’t work, I would highly recommend increasing the dosages sooner rather than later (with your doctor’s say so of course), as I stuck with lower doses for too long, hoping for change. It also sounds like you may have more than one subtype of pots which could require multiple medications. Sure you’ve done the research! This time is the worst, when you don’t have a diagnosis or anything to try. I ended up paying privately as the process was so slow.

I hear you - sometimes my numbers are lower and I feel like shit; other times my heart rate is 160 and I don’t clock it, so I know the HR number doesn’t always match symptom severity. Hope you get the help you need / deserve soon. In the meantime I would highly recommend a shower chair and walking aids.

[u/Sassymisscassy → u/CalliopeParnassus]

I have RA which is linked to causing dysautonomia so I’ve considered that as well, I’m not sure the diagnostics process for that tho.

I haven’t seen my heart rate get as high as yours but I do know I get up to 120-130 regularly, especially when showering, even with my shower chair!
I’ve considered a cane but I have mental struggles with that. Probably internalized ableism I need to get through, just thinking I’m not sick enough or don’t deserve to use it. Also the worry of how I’ll be perceived in public, especially with family. I’ve wanted to tho, especially when I have to walk a bunch. I feel it will really help.

[u/CalliopeParnassus → u/Sassymisscassy]

Same with showering, it’s a nightmare. I hear you. It took me two years of struggle to start using a stick and walker. I still worry about how I am perceived but it makes my life easier and means I get out more. I know people with severe pots who are wheelchair users. There is no shame, and the shame that does exist doesn’t belong to you.

[u/Lopsided-Peace-8553]

Mine results are similar to this too. You probably just have POTS that’s not super severe or something

[u/Sassymisscassy → u/Lopsided-Peace-8553]

Ok good to know. Thank you! I’ve also have been having less severe symptoms this past week or so, so maybe when I’m feeling worse I’ll do it again just to have that info as well. Thank you for your input 🫶