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rose28

218d

How do I tell my doctor I think I might have POTS. I've had ongoing issues with my heart for years and many symptoms of POTS but the doctors office refuses to take me seriously. I went and had a 48 hour ecg recently but I have yet to get the results. How can I make my life easier and less restrictive in what I do?

Top reply
    • Maviis

      15d

      Continue to advocate for yourself. It took years for me, but I finally saw a doctor that listened to my concerns and I was diagnosed with it.

    • Maviis

      15d

      Continue to advocate for yourself. It took years for me, but I finally saw a doctor that listened to my concerns and I was diagnosed with it.

    • Gloria

      206d

      Go to a different doctor's office.

    • Christie86

      208d

      Yes u can

    • Christie86

      208d

      rose28 I know it's hard I been to 3 different hospitals and they keep telling me the same things I just want them to fix the problems. I pray u can find a doctor to take u seriously sometimes u have to do it own research to find u the best doctor I know it's not easy but give it a chance

      • rose28

        208d

        @Christie86 I've been saying for years that something isn't right. Am I okay to dm you?

    • Christie86

      208d

      U might need another doctor

      • rose28

        208d

        @Christie86 I'm trying to get a full referral to a cardiologist who will take me seriously

    • Letter

      209d

      Go to an Electrophysiology. You'll need a referral and it costs a hundred bucks

      • rose28

        208d

        @Letter I can't do that

        • Letter

          208d

          @rose28 do you want to private message me why

    • LOUIE889

      209d

      … It’s incredibly frustrating…. I never even heard of POTS until I was at physical therapy. Every single time I would go to sit up from the physical therapy table my heart rate would jet up at least 35 to 50 bpm. It wasn’t until my PT therapist Said I had POTS THAT I pushed for a diagnosis. Thankfully my doctors were very much on board with pushing for the diagnostic testing to really get the diagnosis via post concussion syndrome. All I can say is be your own best advocate and it’s your health so be adamant about the testing that you want. I would start with the poor man’s table test… Google it. You can also start with monitoring your heart rate. You can get a finger heart monitor on Amazon pretty inexpensively. I myself keep track with it on my Apple Watch. I would also do a Google search on POTS symptom list, because you could have a variation of POTS. I know that my blood pressure and heart rate go up, but I know others whose blood pressure goes down and heart rate goes up. Hang in there, I know it’s frustrating but just find doctors who will listen to you.

      • rose28

        209d

        @LOUIE889 I have order a finger pulse thing just waiting for it to turn up. I'm calling the cardiology unit tomorrow as I haven't heard about my ecg results but at the same time I've been saying for atleast 10 years that I have something wrong with my heart to doctors and it wasn't until I went to urgent care with a heart rate of 133bpm that they actually took me seriously

        • LOUIE889

          209d

          @rose28 the great thing (could) be is that your rapid heart rate doesn’t have anything to do with the actually heart. That was one thing I had to kind of really go into research mode about because I was so scared with my heart rate skipping from like 70 to 165 that my heart was going to explode… But what having POTS comes back down to is your autonomic nervous system. To be honest I had to go back and school myself with an online biology class. But the gist of it is that for at least my diagnosis of POTS-it is due to sympathetic overdrive in the autonomic nervous system. What that means is I’m stuck in flight or flight. There’s an imbalance between my sympathetic nervous system and my parasympathetic nervous system. Once I started doing the research I remember that the sympathetic is the part of your body responsible for the “fight or flight” and parasympathetic is for the “rest and digest” -something about the syndrome is that it knocks the two systems out of balance… So that’s why more than likely your heart rate is going up tremendously and blood pressure gets crazy because your body is looking to either throwdown with somebody or it has enough room for you to be able to run away. Really try to find a doctor that you can talk to that knows that you’re being honest about your symptoms. A lot of the symptoms mimic anxiety, depression, and a slew of other ones, which leads us POTIES to get a ton of meds we more than likely do not need…, The best thing that my doctor from Johns Hopkins has told me was the data from a Buffalo stress test-that was a treadmill test that gave DATA to help get me back to balance.

    • jellycats

      213d

      im in the same situation. so far the tips i recommend is to 1) find a doctor that at least seems compassionate and listens to you, because i saw a cardiologist and he was in the room for less than 5mins. 2) make a list or chart of all your symptoms, when tehy started, what makes them better or worse, etc. 3) and just keep telling them what you think because i had to tell my general dr multi times before she said fine and scheduled an appointment to just talk about my fainting/dizzy spells

      • jellycats

        213d

        @jellycats oh also! i did the "poor mans table tilt test" thing at home with my dad and twin to watch over me and that would be an important thing to chart too since thats basically the test they do at the drs to see if you have pots!

        • rose28

          213d

          @jellycats what's the "poor man's table tilt test"

    • Whistler

      213d

      I use to do the salt packet thing. They have these packets called Liquid IV that work as well. Or you can make your own electrolyte with: -1 cup coconut water -1 cup filtered water -1 teaspoon honey or maple syrup -1 lemon or lime juice -1/8 teaspoon of seasalt

      • rose28

        213d

        @Whistler this is very interesting I will have to Try this out

    • emokitty

      216d

      My doctor at pavilion family medicine just asked me questions after I told her my symptoms and she diagnosed me with everything I said.

    • Ash.G

      218d

      I am wondering about the same thing. Though my palpitations are usually panic attack or heat related. Exercise tires me out a lot though. Hopefully, you get the help and support you need.

    • Healforhealth

      218d

      Hi there! You should definitely speak with your doctor. Explain all your symptoms to them, and help them understand why you are concerned that you might be dealing with POTS and that you would like to get some diagnostic testing done. If your doctor is set against this testing, then it might be time to move on. Try and find a doctor who will be more open to listening to your concerns and be more on the same page with you. If you are unable to break away from this doctor, try printing out some information for them. Record your vitals for a few weeks, like sitting blood pressure and heart rate as opposed to standing, blood sugars, sleep cycles, and give that info to them and explain (with proof) why you have these very valid concerns. I'm sorry that you are in a position like this, and I hope you get the testing you need and deserve very soon. 🙏❤️

      • rose28

        218d

        @Healforhealth 🙏I had a 48 hour ecg recently I'm awaiting results but it's been over 5 years fighting to get this far and its scary that I have no support on this

    • MelRad

      218d

      If you haven't seen a neurologist for this issue that's what you need to do. To lessen your symptoms try liquid Iv and keep packets of salt handy. That way if you feel like passing out you have it. Drink water all day long and stay hydrated. My doctor put me on propranolol and told me to drink water until my pee was pale in color

      • rose28

        218d

        @MelRad how would salt help? I haven't heard of this would you be okay if I message you and we can talk about this further

        • MelRad

          218d

          @rose28 sure you can message me privately

    • RainbowNarwhal

      218d

      If they continue to not take you seriously after those results, ask for a tilt table test. If they won't do that, I would suggest finding a different doctor. Doctors who don't listen honestly aren't worth your time unless you have no other options. For managing POTS, I've found that adding electrolytes (Liquid IV) to my water consistently has really helped. I've also joined FB groups where people share their experiences and what works and doesn't work for them, kinda like this app.

      • rose28

        218d

        @RainbowNarwhal my doctors basically don't care so I ended up going to the hospital and they had me on a 48 hour ecg (holter monitor) I'm waiting on the results it's been about 5 days or so but the palpitations, breathlessness and dizziness makes it hard to function. Would you be okay if I message you so we can talk further about this?

        • RainbowNarwhal

          214d

          @rose28 Yeah, feel free to message me!

☝ 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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One of the patients suggested to find a cardiologist and ask for a POTS evaluation. This may include an ECG (sonogram), Holter Monitor for 14 days, and a Tilt Table Test. It's also recommended to keep a detailed journal of your symptoms. The ECG will look for any abnormal issues with the structure, and the monitor and TTT combined will give a detailed profile at how your heart reacts to the changes that occur when you move.

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