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

1. MrsP1983 24 April 2012 at 13:41PM
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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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2. coggy 24 April 2012 at 22:06PM

   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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3. MrsP1983 25 April 2012 at 08:14AM

   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.

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4. midgemac 26 April 2012 at 20:16PM

   There is a support group for POTS patients on http://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 http://stars.org.uk (you need to register with STARS to access the list).

   Good luck.

   Midge

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5. Emis Moderator 27 April 2012 at 11:41AM

   There is also this article http://www.patient.co.uk/health/Postural-Orthostatic-Tachycardia-Syndrome.htm on http://Patient.co.uk which was written by the Stars organisation if it helps.

   Emis Moderator.

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