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carlussy

637d

hi everyone! so long story short i’ve been having every symptom in the book aligned with POTS syndrome but would love to hear from people who have POTS if these resonate with you. it’s hard dealing with this every day because i feel like my doctor doesn’t really take it seriously (and softly diagnosed me with orthostatic hypotension which is not the case bc my BP isn’t low when standing lmao), which is fair bc of the “self diagnosis” but im truly just comparing symptoms to what makes sense. i’m 22 and it’s debilitating and would be such a weight lifted if i knew i was right about my body. although i know reassurance isn’t diagnosis, it’d still be good to get some advice.🤍 so i currently have -lightheadedness/head pressure upon standing or adjusting sitting up -increased heart rate upon standing/sitting up -fatigue -sensitivity to exercising (i CANNOT go on a treadmill with stepping off and the world spinning) -once a year i have episodes of almost fainting, once was in a hot shower and the other was minutes after i woke up. starts with nausea then lightheadedness then faintness. -“third” heart beat, heart can feel like it skips a beat or pounds pretty hard when i move from laying/sitting to another position your feedback would mean the world and more, and if there’s any advise please feel free to relay it!! (ps- yes i am a hypochondriac, but that is more towards fear of anaphylaxis. this is something that interferes with every day life and i just learned to kind of adjust accordingly.)

Top reply
    • ForceMajeure

      354d

      I have had POTS for 15+ years, and all of your symptoms sound like POTS. BP is not relevant for a POTS diagnosis - POTS is all about heart rate. Upon standing, some POTSies BP goes up, some goes down, some stays normal. I have hyperadrenergic POTS, so mine goes up, but severely years ago it used to drop. Fainting also isn’t a requirement for POTS. I have several POTS friends who have never fainted. I have only fainted a handful of times in 15 years. I would suggest measuring your HR while laying down and then also while standing up. If it goes up over 30 bpm, tell your doctor. If s/he doesn’t order a tilt table test, find a new doctor. You mentioned a fear of anaphylaxis - is there a particular reason you have that fear? I’m wondering if you might also have some of the other comorbidities often found with POTS.

    • ForceMajeure

      354d

      I have had POTS for 15+ years, and all of your symptoms sound like POTS. BP is not relevant for a POTS diagnosis - POTS is all about heart rate. Upon standing, some POTSies BP goes up, some goes down, some stays normal. I have hyperadrenergic POTS, so mine goes up, but severely years ago it used to drop. Fainting also isn’t a requirement for POTS. I have several POTS friends who have never fainted. I have only fainted a handful of times in 15 years. I would suggest measuring your HR while laying down and then also while standing up. If it goes up over 30 bpm, tell your doctor. If s/he doesn’t order a tilt table test, find a new doctor. You mentioned a fear of anaphylaxis - is there a particular reason you have that fear? I’m wondering if you might also have some of the other comorbidities often found with POTS.

    • Finleaf

      354d

      My symptoms sound very similar to what you're describing and I am also self-diagnosing with PoTS so i think you're on the right track personally! It might be useful to know that one type of pots (hyperadrenic pots) actually has BP go up when standing. BP isn't really a deciding factor as people with pots can have it go up, down, or stay relatively normal, it's the heart-rate that is important

    • readingrainbow

      628d

      i have all of these symptoms too and feel you so much. i tried to talk to my family about getting me diagnosed but they won’t take me seriously and think i just want attention. i don’t think a doctor will take me seriously either. i’m so sorry you have to go through this too :(

    • HisWillNotMine

      631d

      Your symptoms sound similar to mine. BP and HR shoot up, never down. Look into hyperadgrenic pots (sp) 😅

      • 55isMe

        354d

        @HisWillNotMine same

    • wise

      635d

      the "third heartbeat" isn't necessarily a POTS thing, everyone gets those occasionally. other than that, it does sound like POTS. I have the same issue, only when I could stand I would usually pass out/immediately drop to the ground because of how quickly my BP dipped. my heart would also be racing for like an hour after an episode like that lmao, it was NOT great. I still have those episodes, but not nearly as frequently after starting beta blockers and adding sodium to my diet

      • carlussy

        635d

        @wise see and that’s where i run into the dilemma of “what is wrong with me”, because when i stand up i have to be still and hunch over or grab something but i haven’t passed out yet, just have been close when i woke up/in a steaming shower and while my heart rate does increase to 140-160 bpm upon standing it subsided within minutes. the third heartbeat i know isn’t corresponded and is a normality, but i’m thinking it’s a palpitation due to it occurring when i’m dealing w other symptoms. thank you sm for your response, i appreciate you a ton🫶

        • wise

          635d

          @carlussy not everyone with POTS faints! presyncope is much more common than straight up passing out like I would. don't rule it out just because you don't lose consciousness

    • ginkgowink

      635d

      I’m so sorry you’re struggling to get help. I’m not a doctor, but the symptoms you described do sound like POTS (and there are different kinds of POTS which could explain the BP stuff I think). I would ask for a referral to an autonomic specialist if I were you. They could probably get you the proper testing, diagnosis, and treatment. This website is super helpful and has a map to search for a specialist near you: http://www.dysautonomiainternational.org You could bring it to your doctor and ask for a referral to a specialist near by. I hope they’re willing! In the meantime, I would recommend increasing your water intake and trying out some high sodium electrolytes! (My favorite is LMNT). I am still technically waiting on a formal diagnosis myself, but both my autonomic dr and my GP said it was fine to take, even without a diagnosis. You just have to keep an eye on your BP if it’s a problem for you. I have at least 1 LMNT packet every day (more on very symptomatic days or on hot days) and it’s made seriously a huge difference for me. My symptoms are mild for the most part now. The only caveat is my autonomic dr told me that increasing sodium can affect your test results, so if you go in for testing stop taking them for several days before. :-) Hope some of this can help you!

      • ginkgowink

        635d

        @ginkgowink Also, compression stockings are another low risk thing to try to manage symptoms while waiting for more help. My autonomic dr said they really only help if they go up to the thigh (meaning not just socks). Some other low/no-risk tips: -have water by your bed and drink before trying to stand up. -elevate your head while sleeping if your symptoms are really bad in the morning (can raise the head of your bed with blocks or just try pillows at first) -try to avoid hot water in the shower -try a shower chair so you’re not standing -drink more water and try to get more sodium on hot days -transition to an upright position slowly. If you are laying down, start by just sitting up for a bit before trying to stand. Hope some of these can help make life a little more manageable until you get proper help 🤍

        • carlussy

          635d

          @ginkgowink this is absolutely incredible, thank you so so much. it’s definitely been a process and something that has lead me to be a diagnosed hypochondriac because of so much invalidation, but knowing that im actually valid for having these concerns and it directly being corresponded with this is so reassuring. ss the tips you gave me, gunna order some compression socks and for now up my gatorade intake (that’s all we have w electrolytes lol). i appreciate this more than you know🤍🤍🤍

    • SmileySnail

      636d

      With diagnosis you may run in to an issue getting diagnosed because your BP doesn't drop when standing - mine doesn't drop either, it's just my HR goes up. I've been diagnosed with inappropriate sinus tachycardia, which is a similar kind of dysautonomia, but I'm still unsure because I feel like BP (orthostatic hypotension) shouldn't be a diagnostic requirement for POTS if HR goes up upon standing. Sorry for the rant, I just wanted to warn you about the hurdles I've been running into

      • carlussy

        636d

        @SmileySnail but thank you so much for the heads up, i appreciate you!🫶

      • carlussy

        636d

        @SmileySnail oye vey, when thinking of pots it’s not directly corresponded with BP bc that would be considered hypotension, it’s more circulatory issues so i’m confused as to why that could be- but i’m definitely going to look more into it. such a pain having these symptoms every day to no avail, been 5 years and it’s tiring not getting an explanation. :/

        • SmileySnail

          635d

          @carlussy yeah I'm very confused about that too, it didn't sound quite right to me either but here we are I guess. The IST diagnosis works decently well for me either way cause my resting heart rate is generally ridiculously high anyway, so I guess we'll figure it out eventually. If I somehow luck in to a bunch more money I might try to go to a dysautonomia expert, but the nearest one is 4 hours drive away from me.

    • Dorkasaurus

      637d

      I'm gonna comment so I remember to come back and give a proper reply! It's just late right now I'm going to bed, but I want to help later :)

      • carlussy

        636d

        @Dorkasaurus you’re a sweetheart thank you!!🤍

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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