DizzyPopcorn

Hello everyone, long time no see. I was feeling relatively OK for the past year with my usual rise of heart rate when standing (around 90 bpm standing). Aside of that, nothing else. Since the last 2 weeks, i've been feeling awful. Extremely tired, episodes of adrelanine rush, dizziness (rocking internally, left and right, not the "Whole room is spinning" kind of dizziness), breathlessness, hot rushes, tingling in legs and arms, elevated heart rate (80) and constant yawning. It just doesn't stop. I've been to 3 different doctors and all say that it is just an anxiety / panic attack flare, that everything is alright, all my blood / urine tests have been fine (extensive panels, including thyroid (TSH) and other tests like cortisol, etc) and that this will pass with due time. Except i don't believe them. I'm sorry if i'm being petty, i know that compared to many of you, my situation is probably "easy". But i'm feeling awful and not at all like a 26 years old should feel. What brings me to write here this morning is my temperature. I was feeling a bit cold and i was shivering when waking up, so decided to take my temperature. It was 95.7F. I know d*** well that a temp of 95F is hypothermia and is dangerous. But i don't know what to think of it. I'm sick and tired of everyone labelling me as a hypochondriac all the time. I'm not feeling well and apparently this is all in my head. What am i supposed to do? Ignore my low temps? Ignore my constant fatigue? Ignore my elevated heart rate? I just wish someone would listen to me and give me a thorough screening. I just want to feel better. Sorry for the rant this morning. Hope you guys are all doing well. What would you do in my shoes? Where i live, if i ever want to see a specialist, i need to go through a generalist first. I'm stuck.

Have you taken very precise measurements of your heart rate each min? For example : 10 min laying down => take heart rate standing => take heart rate 1 min standing => take heart rate repeat until the 10 min mark if possbile. What are your results? If you have a sustained increase in heart rate, you could have pots. But in the absence of that, it could well be something else. Note : You may also want to take your blood pressure at the same time as your heart rate for additional data.

What did he mean exactly by "you did not meet the criteria for pots". Do you have access to the test results? Did your heart not produce a sustained heart rate of more than 30 bpm? OI is an umbrella term for many different problem linked to orthostatic issues.

Wouldn't that be after intense workouts or marathons, though?

I was not. Everything fell apart once i started discontinuing the meds over the course of a month. Went from 20mg to 15 then 10 then 5 to 0. This is EXTREMELY useful information. I'm taking good notes of this and will for sure mention this to my doctor. Thank you so much. Perhaps i quit way too fast and that my body is sensible to changes in hormones. I did not have any symptoms whatsoever before that, aside of panic attacks / GAD. Again, thank you very much for this information!!!

I use a omron without any problem. Mind you, however, i record my data manually in a spreadsheet because of privacy concerns.

Thank you so much for posting this! I'm literally crying of joy. I used to be symptomatic when i discontinuated my previous anti-depressant, celexa. I started experiencing random adrelanine surges, often upon standing fast. Also, i had random off-balance / lightheadness feeling. I took that medication for my GAD. When i started taking my new anti-depressant, lexapro, most of my symptoms completely disappeared and i felt better in days. The only thing remaining is my standing heart rate for my first 10-20 seconds. My heart rate always come down and never stay up, regardless of time, temperature or activity. This is why i'm so confused. I can also take a hot shower in the morning without issues. The only real symptoms left that i have right now are : random off-balance feeling (like on a boat or in an elevator when going up / down), weakness in arms when elevated above shoulder ( I can still use my arms without issue, but i feel a small pain / weakness quite fast in my shoulders / upper arm muscle) and have a pressure in my head when bending over / being upside down. It feels like being underwater. You're the first to say that this is completly normal. I have googled for the past 6-10 months extensively and every time i search "high heart rate upon standing" i always stumble upon websites that talk about OI / POTS etc. Never once have i found an article or research data that shows it is "normal to have a sudden increase in heart rate and then a drop afterwards". In any case, thanks for sharing your experience with me, it is appreciated :).

Well, for the lack of a better word, that sucks.

This morning : Sitting on a chair : 67 Standing : 97 After 20 seconds standing : 65 After 10 minutes : 70 Go figures, my body likes to play yoyo lol

That's actually normal. Usually, bp falls a little (say, 10points) and hr increase to compensate the change in gravity. High falls in BP, or increase of BP upon standing, is what is abnormal.

So i guess there's a chance i'll never really be diagnosed for real... Well, guess i might have to live with this. Thank you, i hope too that they are negative. I'm the kind of person that usually "power through" things. I honestly do not mind crashing afterwards "just to prove me right". Aka, i'm the one controlling my body, not the opposite. I know it might not always be possible but i usually do it like that.

It's crazy that a pill can have an effect this strong on your body, to the point of completly removing symptoms. If that is the case, i'm truely lucky (kind of!). Yes, i know that it's on the treatment plan for many. It's just that i wasn't expecting that much of an improvement at all. Was my previous anti-depressant simply hiding my symptoms? Quick question, could this medication prevent me being diagnosed correctly? For example, can it affect blood tests like cortisol and all?

Hey all, hope you're doing good. I've been feeling really well lately (despite small surges upon standing in heart rate). I am able to do pretty much every thing i want since i came back on an anti-depressant (cipralex / lexapro). The big adrelanine surges reduced in quantity and standing isn't such a bore anymore. I do still get a few symptoms, namely head pressure when bending down / being upside down and the heart rate increase for the first 20 seconds of standing, but aside of that i've been doing fine. I am still undergoing tests whether its POTS or something else, so there's that. My new GP is on my side this time, so things are looking bright from that angle. The big difference with before, however, is that instead of taking 1 15mg of antidepressant all at once, i spread it out over 3 doses of 5mg each 8 hours. My heart rate is a lot calmer, i get no fatigue in the morning, and feel way better with less adrelanine discharges. I've also done a test yesterday. It was 32 degrees celcius ( 90F~ ) outside and i went jogging for 30 minutes. I didn't feel bad at all despite the temperature. I also, on purpose, did not drink anything prior, just to try and push me over the edge. Maybe i was trying to prove something. In any case, no darkening vision or anything. I'm pretty sure if i had pots, i wouldn't be able to do that. I know that everyone has a varying degree of functionning, but i don't think someone with pots would be able to tolerate such abuse (from what i've read). My new GP hinted that anti-depressants (like lexapro and celexa) were actually stimulant, since they alter noperipherine. She wasn't that surprised though when i told her i was better on it, because anti-deperessant often act differently for everyone. In any case, i'm happy to be able to do more! I will keep you all updated regardless how the situation evolves :). Have a good one everyone, w.

Hmmm mine is definitely not attention seeking, but i can notice it if i put enough attention on it. Its very faint but its there. I have belly fat, not sure if it changes something or not.

Maybe its my comprehension of english not being good enough, but what is the difference between a "normal heartbeat" and a "forceful hearbeat" visually?

I guess we don't have any gamers hahaha.

I went to niagara falls when i was a kid, barely remember it, but i remember being it beautiful! Its quite a drive from where i live, but i wouldn't mind doing a "one off"

Wait, isn't this normal??? My entire bed is not shaking, but if i put something on my stomach, regardless of hr / blood pressure, it will move a little bit with each beats. Completly normal. We aren't cold rocks.

Is there a dysautonomia day in canada? Where one can go on marches and help make dysautonomia more understood? Say i'm found with no pots and something else and i feel fine after treatment. I do not want to forget what it "felt" like to have that illness or a possibility of it. As such, i'd like to bring awareness to the cause and help research in that field, especially since my mom had CRPS for 15 years until her death.

Thank you very much for those advices :). I will remember them.

Ugh, sometimes i actually feel bad for complaining. I compare myself to many here (including you) and i have it much, much easier. You know, us males sometimes complain a lot for "small" things 🤣. I've read your entire post. I am so sorry. It must be incredibly difficult to live with your current condition. Unfortunately, i do not have experience with your specific symptoms, nor am i a doctor, but i wish you the best and hope others here can help you finding answers / seeking the necessary medical expertise.

This must has been hard, i'm sorry your parents dismissed your condition

So their attitude changed how fast their cancer progressed? Whether they let themselves be defeated or not by the disease?

Oh, yes the commercialy available drinks (like powerade and others) do have more sodium / sugar than potassium. I'm talking more about "home made" mix.

Thank you, i appreciate your concerns :). Yes, i hope too!