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Anyone on here been diagnosed with POTS?

(14 Posts)
Allfurcoatandnoknickers Thu 31-Jan-13 14:49:08

Been for initial test and waiting for tilt table test. My symptoms are worse when premenstrual, and always have been. always thought i had asthma and was anxious, but now it seems may have been POTS all the time. I'm menopausal now so symptoms seem worse at the moment.
What are other people's POTs experiences, and how was the tilt table test if you have had it?

topsi Thu 31-Jan-13 14:58:15

Hello Furcoat. No I have not been diagnosed but wonder if I have some of the symptoms. I get dizzy on standing and am always tired. I tried the standing up test and did have a drop of 30 (I think this figure is correct). I never pass out though.
Can I ask your symptoms please and whiat you know about the condition.

IShallWearMidnight Thu 31-Jan-13 15:04:09

DD2 has PoTS -look at STARS and POTS UK for more info.

Her tilt test was not as bad as she was expecting -when you remember that it's designed to get you to faint (with any accompanying symptoms) then it's not going to be exactly fun, but it was OK. Currently she faints a couple of times a week, but it comes in bursts, so she'll have a month with nothing, then a few weeks with faints. This book is fun, and pretty informative to let people know what's happening to you.

DDs treatment is salt, salt and more salt, water, water and more water, and exercise, exercise and more exercise. She's also just started betablockers which have made a huge difference, and she no longer feels dizzy all the time.

Other things to google are autonomic dysfunction and dysautonomia - don't be put off by american sites, as that's where the latest research and treatment is coming from -DDs doctor visited the Mayo Clinic and has has changed everyone's treatment now grin.

DD felt a lot better mentally when she got an actual diagnosis, and it meant that other doctors took her seriously.

IShallWearMidnight Thu 31-Jan-13 15:07:21

Diagnostic criteria is a heart rate rise of at least 30 bmp within 10 minutes of standing, can be accompanied by a drop in BP, but not always (there are different "varieties" of PoTS apparently).

DDs symptoms are all listed here - she has almost a full house.

topsi Thu 31-Jan-13 19:21:51

yes I have the increase in heart rate and dizzyness on standing but never faint.

SchroSawMargeryDaw Thu 31-Jan-13 19:39:51

I had the increase and drop on standing and had been hospitalised for it a few times but my tilt test only showed an increase in heartrate (went to 140) and not really much of a drop in BP. confused So have been told by GP that it can't be POTS.

I still feel rotten but haven't heard anything from then since.

magso Thu 31-Jan-13 20:43:23

I don't have a diagnosis of PoTS but am soon to have tests, and suspect it. Quite by accident I found a salty hotel suddenly got me feeling normal ( for the first time in several years of presumed chronic fatigue syndrome) so i have increased my salt levels and lots of fluid and feel somewhat better. Not as good as staying in the hotel. I got medical staff worried during recentish surgery with very high heart rate again- something that happened also last time I was in hospital also. I think if it is post tachycardia - the nil by mouth thing makes it more apparent. I have not ended up on the floor for quite a while. Obviously no one should eat a high salt diet without medical advice so I am waiting till I see the specialist, but am interested to see salt mentioned here.

IShallWearMidnight Thu 31-Jan-13 21:57:28

DDs doctor told her to eat as much salt as she could physically bear, it might kill the rest of the family, but for her it was good smile. We're struggling a bit, because I don't tend to add salt to my cooking, and there's only so much you can sprinkle on a meal before it become inedible. Plus most salty snacks are also high in saturates (crisps etc), so it's hard.

Allfurcoatandnoknickers Thu 31-Jan-13 22:20:18

Great replies thanks, good to know we are not alone. I would say my symptoms started in my teens and have in the whole improved. I have always been fainty, especially premenstrually and during my period, and after big meals which I could never explain. I have been advised to up my fluid and salt intake. I hopefully will have the tilt table test soon. My GP had never heard of POTs and was really dismissive initially. He is now making more referrals, as he has read more abut it, so hopefully it will help others too. Will let you know how tilt test goes.

IShallWearMidnight Thu 31-Jan-13 22:27:21

Postprandial syncope is a condition as well. I did read somewhere that some people faint post-poo, so it could be a lot worse wink

IShallWearMidnight Thu 31-Jan-13 22:39:43

Anyone in SE England (or who can travel to London) - the leading clinic for PoTS is run by a Professor Matthias at St Marys in London. There's a stupidly long waiting list (at least 9-12 months I think), but I understand they do extremely thorough testing (over several days). Otherwise try for a "Falls Clinic" usually aimed at elderly people, as they are a bit more aware of autonomic dysfunction.

Also PoTS is linked with hypermobility (Ehlers Danlos - hypermobility type/Joint Hypermobility Syndrome), so anyone trying to get a diagnosis who is also hypermobile, could maybe try via Rheumatology.

But as a first point of contact I thoroughly recommend STARS who have a helpline and loads of information, including slides from the last two Patient Days which had a big PoTS focus. They saved my sanity (and got DD to a doctor who had a vague idea what was wrong with her) when she first started fainting and her then paediatrician decided it was due to "deep rooted childhood trauma" and that she needed a psychiatrist shock. Apparently the average time trying to get a diagnosis is 10 years shockshock

Allfurcoatandnoknickers Fri 01-Feb-13 07:30:03

I've seen an excellent specialist nurse in our local Cardio dept. have had thorough testing but not the tilt table test... I am hypermobile too, did the test, can't remember what my score was now but it was quite high.
It's good to think after all these years i am closer to a diagnosis, that more is known about this, and that it's not just all in people's heads!

magso Tue 12-Feb-13 08:56:01

OK so I do have a marked drop in BP on standing- was tested when attending ENT for dizzyness and pulsitile tinitus. I am still waiting to see cardiology, (and have MRI and doppler scans) but in the meantime is there anything I can do to counteract the drop in BP? I read about wearing compression garments. Would support tights give compression? I already keep my fluid levels up and eat salty food. My ability to think and speak deteriorates when upright.

Allfurcoatandnoknickers Thu 18-Apr-13 19:23:45

Have had the tilt table test done today. Not exactly my idea of a good time, but was a very "positive" result in that my bp dropped and I fainted when tilted upright. There was no change in my actual heart rate. The nurse said it wasn't POTS but vasovagal syncope. I've got to go back to clinic for a follow up appointment.

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