Anyone have any experience with POTS?

chloeanne
chloeanne Online Community Member Posts: 14 Connected
edited April 2023 in Rare, invisible, and undiagnosed conditions
Hi, I’ve been researching pots for a couple of months and a lot of it seems to fit me. I think I naturally have quite a high heart rate anyway, my resting heart rate is about 85/90 bpm but when I stand up it consistently jumps higher. Usually to around 130 bpm, it goes back down to 95/100 bpm in about 5 minutes. I’m 23 female if that makes any difference. But I also get dizzy when I stand more often than not, everything goes black and I can hear wooshing in my head that lasts for a about a minute. I’ve also been extremely fatigued this past 8 months, I’ve been to the drs for it and they’ve taken my bloods and done an ecg but everything’s come back normal. 

I get heart palpitations all the time, seemingly at random or when I stand, constant headaches, I sweat all the time even when I’m cold. When I do even light exercise like walking along flat even ground for 5 minutes my heart rate can rise to over 150/160. When I went to the gym I constantly felt like I was about to faint and my heart rate was up at 190! 

Does this sound like it could be pots? Obviously I know no one can diagnose me, I just want to know if it’s worth going to drs about. How do I go about trying to find some answers if it is? Any and all advice is appreciated

Comments

  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    edited March 2023
    If you're feeling at all worried or concerned @chloeanne then I'd encourage you to chat again to your GP about what you've been noticing. I'd say it's certainly worth asking about, even if for your own peace of mind!

    Your doctor should be be able to talk things through with you, and answer any questions you might have, and if not, they might be able to refer you on to other specialists you can help support you. What did the surgery say after your bloods and ECG came back normal?

    Speaking from my own experience of PoTS-like symptoms- bearing in mind it's different for every body- I find when I'm on my period, I can feel faint and dizzy and have a higher heart rate when I get too hot in the bath. It might be worth keeping an eye on any hormonal changes as well as the symptoms you've described, but I'd always advise to speak to your doctor :) 
  • chiarieds
    chiarieds Online Community Member Posts: 16,829 Championing
    As Alex says, please do try to raise your concerns with your GP. I think for your own peace of mind you need, as Alex also says, to rule PoTS in, or out.
    I don't have a diagnosis of PoTS, rather orthostatic hypotension & dysautonomia due to having a genetic disorder (Ehlers-Danlos Syndrome in which PoTS is common).
    If, & as yet it's an 'if,' it's PoTS, then, as you've probably already read, tilt table testing may be helpful.
    Co-morbidities of any other problems you may have could be looked into; if you have joint hypermobility, then Ehlers-Danlos Syndrome is a possibility. With you mentioning fatigue, then fibromyalgia (where blood tests are essentially normal), or ME are again possible.
    For now, try to avoid anything that exacerbates your symptoms; Alex mentions hot baths, which are best avoided, I have problems with blood pooling in my legs with a shower (not hot), & have a faulty thermostat where I can also sweat in cold weather, or even eating, i.e. gustatory dysautonomia, where I have to squat down on the kitchen floor to avoid problems with my low blood pressure & those 'dizzy as a coot' moments.
    Ensure you're well hydrated, as the commonest cause of a headache is not doing so. Before standing, do try contracting your abdominal muscles as this may help. When sitting, have something to rest your feet up on (this helps both my son & I, who have EDS + orthostatic hypotension, as well as tightening our abdominal muscles prior to standing).
    As you may see, your symptoms may or may not indicate PoTS, but your GP is your first port of call. Should you want to read more about PoTS, then I suggest reading this pdf by Dr. Rowe: https://dysautonomiainternational.org/pdf/RoweOIsummary.pdf
    If you need to see a PoTS expert in the UK, then try to seek a referral to a neurologist such as Dr. Mathias in London: https://www.ehlers-danlos.com/christopher-mathias/ 




  • Dot2710ken
    Dot2710ken Online Community Member, Scope Member Posts: 44 Connected
    Jumping on this thread, been searching  on here to find peeps with conditions like mine(obvs not very well). I have been diagnosed with POTS, LC and other dysautonomic symptoms. I have a faulty thermostat too,  goosebumps and cold shivers in the shower. Sweating like mad after a bath or the slightest exertion. or non-exertion.  I'm currently medicated for my tachycardia. and meds to increase my BP. plus sodium tables, and sexy compression garments. 

    I've had to be redeployed from a career that i absolutely love. my life has changed so much. I used to work 50/60 hours a  week, as i did overtime just cos i loved my job. I went to the gym 2-3 times a week. and had an active social life.  Now......now i stay at home and WFH. and even that is hard going. 


  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,866 Championing
    @Dot2710ken Welcome to the community! :) 

    I'm sorry to read that you have had to change so much of what you love because of your health. There are many members who will be able to empathise with that, myself included.

    We have a Coffee Lounge if you want to play games and make friends :) 

Categories