POTs Syndrome? Call me Dr Goggle - GP thinks its aniexty?!

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Hi everyone, looking for some advice. I am a 28yr old previously healthy mother of two. Youngest was born 8 months ago. Not long after she was born I started having some odd symptoms. Including palpations, chest pain, feelings of breathlessness, leg cramps, dizziness, one episode of blurred vision to name a few. After one scary episode of chest pain I had a 24hr tape during which nothing happened. SInce I have developed racing heart just on standing and walking around. I had bloods done which showed low potassium - doctors are in process of retesting and retesing until they get a borderline normal result I presume (im current awaiting 3rd set of blood results!) I have a blood pressure monitor in the house and have notived that whilst im lying down my pulse ranges from 55-70 at most. When standing it goes up to over 100 - up to 120 just walking.

The gp is keen to write my symptoms off to aniexty but Im not convinced. Part of me is starting to think maybe I am crazy. Im constantly exhausted and struggle to make it through the day if Im honest. Any input or advice would be appreciated. Thank you in advance.

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  • Posted

    hello, as a practice nurse I would advise you to go to the surgery, next time you have the palpitations and see if there si someone to do an ecg on you. There are various reasons why you coudl be experiencing these but if your heart is racing , it needs to be treated and the heart rhythm recorded. I had a pateint who had 24 hr tape x2 over last week, nothing showed up as he had no palpitations, then last week came to us when he had it. We took ecg, he needed treatment and is now feeling mmuch better now he is on the right medication. Sometimes however people feel they have palpitations but infact the heart is beating correctly. You just need ot havean ecg when u have condition to be sure x
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  • Posted

    Hi Coggy,

    Thank you for your reply. I had an ecg during an episode when the paramedics came adn they said it was abnormal - prolonged gap before the repolarisation wave (I forgot what that is - the t wave i think) and an absent u wave (which is quite common Im told) by the time I got to the hospital it was normal again. I ended up discharging myself as I sat for 3hrs behind a curtain with not a single person coming in. No follow up since.

    Ive got an appointment at the start of may with a doctor to see what to do next ? Hopefully ill get some answers. sad

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  • Posted

    There is a support group for POTS patients on potsuk.org. In the 'pots for medics' section, there is a pdf printable guide for GPs. It may help to take this to your consultation. The last paragraph describes the 'stand test' which can be done in a GP surgery.

    If your GP suspects you have this condition, they may refer you to an electrophysiologist (cardiologist with an interest in heart rhythm problems). There is a short list of doctors with knowledge of PoTS on the potsuk website and a longer list on the STARS website stars.org.uk (you need to register with STARS to access the list).

    Good luck.

    Midge

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  • Posted

    Hi there. I'm 30 years old and a mother to two boys. I have been diagnosed with panic disorder since I was in my early 20's although I knew that wasn't it. In the last year, I was feeling all these symptoms coming on stronger. Im guessing they get worse as I get older. I met with me cardiologist a couple weeks ago and did a stress test and echo. When I went to get up my heart rate went to 124. He automatically knew what was going on. I feel like crap

    Most of the time. Very tired, no energy, figit all of the time, dizzy sometimes. My Dixie prescribed me fludrocortisone and said to drink 2-3 liters of water a day plus my sodium intake needs to be 3,000-10,000 mgs a day too. I have good days and bad days. I just wish I felt normal again.

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    • Posted

      Hi

      Just wondered if the salt and water's making you feel better yet? I ve got the same symptoms and just started the same treatment but with out the meds. Really hoping to feel better soon as I feel soooo washed out all the time!

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    • Posted

      Hello! It's been helping a little. I've only been on it for about a month now. If I drink lots of water, I feel pretty good. Guessing it helps the blood volume. I hope you get some good luck out of doing the same things I have to do. It's not fun feeling so crummy all of the time. Take Care.
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