nooniegirl

I have suffered from weak legs on numerous occasions and about two years ago I had lots of nerve testing on my legs but the results were all clear so I was told most likely to be another POTs symptom

I have been messing around with my diet since the beginning of the year trying to see what helps the POTs symptoms. It seems that carbs have a big impact on my tachycardia and I always watch my caffeine intake. Today I had to have some chocolate and now I am suffering my HR is the highest its been in a while, I feel breathless and generally wired. 'd be interested to hear anyone elses diet do's amd don'ts

Hi

I used the forum a while back when I was struggling to get a diagnosis. I am now an offical potsie and wondered if there are any London or UK people I could bombard with questions?? All help much appreciatd

Jess

I developed symptoms around 6 months after the birth of my second child and finally got diagnosed a year later. I have good and bad days and I am not on medication yet, my consultant wants me to try lifestyle changes for the next few months (water, salt, stockings etc). I am fainting on average 4-6 times a month but I have it alot more under control since I got diagnosed. I am also having my iron levels monitored as they think my body can't retain iron and this may be making things worse.

I have been told the POTs may well disappear as quickly as it came on so here's hoping!

I too suffer from the fear of fainting, in fact it has at times been so bad that it over shadows the POTS. I worry about fainting on the street, which I have done, fainting when holding the kettle, crossing the road, when I am alone with my children, when I use the bathroom (I don't lock the door), the list goes on. I also worry about who will help if it happens when I am out with my two children, I had a nasty inccident when it first happened and a drunk had started to walk away with my pushchair and my baby!! The other ridiculous thing is I worry I won't come round.

I suffer from a severe hospital phobia which has not been helped over the last year with all my POTs inccidents. I have been referred for Cognitive Behaviour Therapy to help with the phobia and I am hoping they may help me deal with the fear of fainting.

I feel really silly about it all and life before pots was never filled with so much anxiety.

Jess

The thing is at the first sign of it I freak and believe that I am going to pass out. I guess it just takes some getting used to.

being lightheaded is very common with POTS. i dont think i have gone one day in 3 years without some sign of this symptom. i get it when my bp is low or when i am about to pass out. You would naturally have it if you over did it. Laying down and drinking more fluids usually helps but sometimes you jsut have to ride it out..

its a pain in the behind! haha

Hi

I got diagnosed two weeks ago with POTs and the consultant I have been seeing thinks I am coping well without medication and I tend to agree. I have increased my fluid and salt intake and have been wearing the support stockings and knickers and hadn't until yesterday suffered a collapse in almost 8 weeks! Yesterday however I collapsed in the hospital (I only popped in to use the cashpoint) and ended up spending 14 hours in A&E, after which I was basically told to get home and not to get overconfident because I do have something wrong with me!! I was soooo cross!

Ok but the point of this message is to ask about collapses and lightheadedness. How do you all cope with these symptoms? Do you worry about collapsing while you're on your own? How do you stop the lightheadedness?

Any tips much appreciated.

Thanks for all the positive replies. I have today been wired up to a 7 day heart monitor. See the consultant on the 12th so fingers crossed they'll be some news

Hi

I am halfway through testing for suspected POTs and I was hoping to meet some people that have been diagnosed in the UK. I am having my tests done through Kings College Hospital