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Anyone on here got POTS?

(6 Posts)
Allfurcoatandnoknickers Sun 22-Dec-19 16:28:28

Reason I ask is I’m 53 and had pots since a teenager but only diagnosed in my 40s.
When I get a virus (cold etc) it always seems to trigger off my Pots.
Anyone have the same? I’ve been really virally and run down this week and felt v faint yesterday.

OP’s posts: |
girlofthenorth Sun 22-Dec-19 17:09:51

My daughter has POTS , DD19. When she gets run down or infection she usually gets them really bad and knocks her out . She gets dizzy and it sets her heart rate off . We usually encourage her to drink more and have more salt, stick legs in the air and rest. Her POTS is badly controlled though and she's having a bad year. So always everything is much worse than if she was fitter and stronger , if you see what I mean .

RemusLupinsBiggestGroupie Sun 22-Dec-19 17:42:39

I'm not diagnosed but was having many of the symptoms before I was prescribed Fludrocortisone. Even a slight cold makes me feel very dizzy and wobbly, and my specialist said it's often the case.

Lifeaback Sun 22-Dec-19 17:58:09

I was diagnosed with POTS 2 years ago. I have a congenital heart defect so have a yearly scan and check up with a cardiologist, for as long as I can remember I’ve experienced dizziness every time I stand up but had noticed that this had worsened and I had started to black out so was concerned maybe my condition had worsened. The doctor decided to investigate as my symptoms didn’t match my condition so performed a tilt table test and diagnosed me. Researching the condition explained so much to me- I suffer badly with faintness and have lots of triggers which don’t seem to affect most people, for example the heat completely wipes me out and I struggle to function, eating lots of sugary foods makes me feel faint and hangovers make me extremely dizzy.

After increasing my salt intake and strengthening my calf muscles at the gym (this sounds strange but my cardiologist recommended, something to do with the link between your blood pressure dropping and your legs), I’ve been able to manage my condition so much better. I still have episodes where it affects me, especially if I’m very run down or the weather is too hot but these are far less frequent now.

It’s nice to read that other people are in the same boat- no one I know has even heard of POTS, it really isn’t a very well known condition even though it can be incredibly debilitating for some people.

Becca19962014 Sun 22-Dec-19 18:05:59

I've dysautonomia which is related to POTs. I've not found anything that helps me. All support seems to be in America, nothing much outside of London for the uk. I did buy a handbook for dysautonomia project which is here www.amazon.co.uk/Dysautonomia-Project-Understanding-Autonomic-Physicians/dp/1938842243/ref=sr_1_1?s=books&keywords=Dysautonomia&tag=mumsnetforu03-21&qid=1577037777&sr=1-1 On Amazon which I found really helpful. I actually got one for the local hospital as well as I'm sick of being told by useless medics its "just" fainting and to look into getting a job.

Summer the last two years has been hellish for me and I've struggled with recent weather as its not that cold yet everywhere has a lot of heating on which is a moo trigger for me. I've found as I get older my system reacts more and more oddly.

Perimenopause at moment as well so every two weeks having a flare as can't have hrt.

I thought, stupidly once I had a reason for everything that was happening (I also have Ehlers danlos) things would be easier with medics but now I just accused of spending too much time on dr Google!!

Allfurcoatandnoknickers Sun 22-Dec-19 18:06:18

I started with it in my teens and over the years standing for any length of time, eating big meals, viral illness, periods/hormones and stress seem to be my triggers. It’s reassuring to hear from other people and know you’re not alone smile

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