andybonse

Hello, When I stand I feel a headrush and my heart rate also goes up by 30 usually, I inflated the cuff once before standing then stood and it showed my bp drops for like 10 secs. But goes back up to normal after 5 secs along with my faster hr. Is this still POTS?

How long have you had it? Also how was SFN diagnosed? I hope we get rid of it on its own.

If you had heart failure your ejection fraction would be low even when laying down. Exercise will increase sizes if too low

Thanks Dave, Your also seeing improvement which is good, as your heart gets bigger and stronger should see more! Are you on any meds for pots?

I live in the UK and paid private, but could of done it free but would of been a longer wait. I did the MRA to check my coronaries are in the right place as you can be born with them in the wrong place and cause angina. It wont check for blockages, there are special ways to try but only done in studies, I would opt for ct angiogram if I thought it may be blockages, its non invasive and accurate.

a 31 year old female is at low risk of heart disease. family history? smoking? obese? etc.. all factors to be considered. But again, if you get chest pain and your cardio suggests a ct scan, get it done. Better than waking up in hospital needing surgery or not waking up at all.

Male here also, I couldn't believe it when I read its almost always females who get it, my luck I thought, not that id wish it on male or females. I think its important for anyone who has POTS to learn as much as they can, that way you can try different things, learn how to cope and how to feel better etc. We HAVE to keep up with the research and new treatments ourselves as no doctors truly understand and only small studies are being carried out so we have to keep tabs. Oh the potsy world we hate you, youve taken a lot of our lives.

I've been exercising for 3 1/2 weeks on the floor cardio, I can now do 40 minutes at hr 150bpm. My heart rate was going from 70's sitting to 110-120 standing, now it will go up that of a normal person or a little higher. I continue to exercise and plan to get to 1 hour at 150bpm and then start with interval training. My plan is to get my heart as fit as an athletes, such as increased cardiac output and strength will get more blood up when you stand, the force of it will also stop blood pooling as much. Next, I plan to build my legs as much as possible to try get to a more fitter state. I believe exercise can be very very useful with POTS, I dont have any cause of POTS though and its not hyper either so not sure about other people, I hope it retrains my brain also as an added bonus and sorts me out! I've learnt, never give up hope.

The ct scan is the best non invasive way to see blockages, I have the EXACT issue, but when I exercise on the floor I dont get the pain at all, so I put it down to POTS. I've had, Ecgs, stress ecg, echo, cardiac mri/mra, 24 hour ecg, bloods all normal. Im 22 and was offered the ct if I really really wanted but they didnt want me to have it. Now I exercise on the floor I know its not heart blockages as position would not effect it. However, if it bothers you so much, ct scan is a good way and the radiation is worth it if your going to be constantly thinking about it for the rest of your life.

Hi all, As I've not been very well the past 3 months, I've had pots a few years, seems to be a little worse. I went to my doctor and demanded tests instead of being ill, and my new doctors so much better! To start off shes giving me: full blood counts electrolytes infection indicators inflmmation indicators thyroid vitamin b12 and folate coeliac disease random glucose lyme disease, Im so happy shes testing for Lyme after reading a lot of people having it, at least its something on my check list to say ive done. I know the tests not 100%, so how many times should i test for it? quite a tricky one imo. Then in 2 weeks, im off to see prof mathias in London autonomic neurologist who treats pots in the UK, thank god someone who knows what im talking about!! Just a big journey for me to make, get to the train station and then the train station in london it is a 1 min walk to him so not too bad? See what happens from there! Any recommendations for tests to request while im there?

Hello, Tonight, I am sitting bp 125/74 hr 59 stood up 127/75 hr 68, I feel completely normal as if I could get up go to the pub or work etc. Then tomorrow it will be back to square one, hr going high etc.. Anyone get these sort of times where they go back to normal for a little while then bang hits ya again? I really dont get it.

Also my necks going forward at the top

AHA, my dad has ankylosing spondylitis, I get bad lower back pain sometimes, it can cause pots. Might be onto something.

I will do! Does the QSART make you sweat all over? If it was peripheral neuropathy id be shocked, I dont have anything, not diabetic etc, nothing autoimmune that im aware of.. ah will soon see though I guess.

HR is around 125-130 and BP 140-150/90-100, however remembering I am exercising so thats quite normal I believe. I just don't get it, my hearts fine. But adrenalin could make sense as you say. I notice I dont sweat in a lot of places when I exercise, I only sweat on hands, feet and arm pits. I have noticed if I have headphones on my ears will sweat a little. So this concerns me. I was exercising on my back the other day and my back was sticky after and I was laid on the floor so can only assume that was sweat. Arghh so many things with these illnesses its hard to cope!

Yeah I will do, I doubt its mast cell though, usually theres all sorts of other symptoms with it, and I don't get this lying down.

Does anyone have something that sounds like this? When I walk fast for like 10 mins and start to feel hot, I get a weird chest pain and my face feels really hot and flush, so I stop and sit down and cool off and the pain goes after a few seconds? I have had it for years, since I first got pots. I've had all sorts of heart tests and there all normal, I can only assume I'm getting over heated and then my body dilates the arteries and more blood drops due to gravity and pots and I get less blood to the heart? When I exercise on the floor with my bike and use a fan I get my heart rate high and don't get any pains or over heated etc..

How much has exercise improve heart rate when standing? Also how long did it take to notice improvements? Thanks

Hi, I was reading caffeine is a vasoconstrictor, so shouldn't it help us if blood pools / falls down to our legs? I wouldn't mind drinking a cup of tea a few times a day, I havent since I got pots and was too scared to!

I have a private referal just come through for prof Mathias in London UK. Quite exciting to see someone who knows everything to check!!

I took it 30 seconds to 1 minute to be normalised. I'll feel ok at one point and then the next when seated even just a weird spacey feeling just not myself and I dont know how to explain how I feel. Blood pressure and hr always normal ranged never low or too high either, it *****.

Hello, I just had a ecg done and a standing test. I didn't have a virus, well, one day I had a tight chest and it hurt when I breathed in and a clicking noise came from it to the heart beat, I went to hospital as it was that painful but they didn't find anything apart from higher than normal white blood cells, which indicates an infection, I've had that twice before POTS, so not sure if that triggered it off. When I was 16 I broke my collarbone on a bike going up a ramp, also slammed my back but was fine after. It all began around 17-18 years old. No idea what to do now, my cardiologist who knows about POTS says to try and get on as best I can with my life. I'm not terrible and sometimes feel ok, but its getting me down a bit now feeling crap all the time.

Hello, Well, I stand up my bp goes from like 125/71 to 105/71 but after a few seconds its back to normal? Doctors say its not hypotension as it doesn't stay low for long? Any ideas?

Hello, I was reading teenagers can get POTS which actually gets better, I got mine around 16-17 and now 22, not sure if this is the same thing?

Hello, I am trying to find a specialist neuro in the UK who treats POTS and knows about it etc.. What tests do I need to request? I only have POTS and dont think I have any other known causes as far as I'm aware?