r/POTS•
banksiaman

Does any of this sound familiar to POTS sufferers?

Hi everyone. I'm doing one of those posts, sorry if you're sick of them - I realise you all can't diagnose me but I'd like to be informed as possible before going to the cardiologist, so I can be a good advocate for myself. A specialist told my GP I should consider POTS. I have a cardiologist appointment coming up in January so I'm not using this as a substitute - I'm really just wondering if there's anything in my scenario that resonates with anyone here. Feeling a bit alone and bewildered.

I've been really sick for about a year, and not-very-well for probably about two. It has been a long desperate search for diagnosis. I've been on total medical leave for about six months just unable to work. The overriding issue is fatigue, but it's not like sleepiness - I often feel a weird mixture of being utterly without energy and quite wired. All my bloods are normal - I have done exhaustive blood tests, multiple times, including thyroid and hashimotos antibodies.

Sometimes I wake up in the morning feeling like I have been injected with adrenalin overnight - jittery and with a fluttery heart but also exhausted. This will gradually settle down over 5 days and I will have more standard fatigue symptoms but then it will return again. Alcohol is not the cause - I stopped drinking and I did not really improve overall - but it is a trigger. If I have a couple of drinks I will be tired but okay the next day, but the day after that I will be a pale tremulous wreck for about a week (I don't drink any more). My liver is in perfect shape.

I presented to my GP with 140bpm heart rate one day a couple of months ago and this is the first time we started thinking about the heart, although she was not really familiar with POTS. Since then I have noticed I can often feel my heart pounding away in my chest quite fast (although not 140bpm more like 100-110) at times when I'm just chilling out - e.g. when I wake up and am dozing in the morning. 24-hr holter monitor and echocardiogram came back normal. ECG says sinus arrhythmia. A couple of different doctors have noticed my heart is racey when I am quite calm. Other symptoms include Raynaud's syndrome and sometimes blurry vision after a hot shower.

I haven't fainted, my blood pressure is normal and I don't specifically notice getting dizzy upon standing up.

Is this story ringing bells with anyone? I know ultimately what I need to do is wait and see the cardiologist, but in the mean time I'm just interested to hear from anyone about their similar/divergent experiences. Thanks mates.

PS I'm a 30 year old woman.

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Posted Dec 16, 2018, 11:09 PM UTC · edited

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