Alison

Lyla - thanks for the link, She has some great recipes on her site. I think it's going to be a lot of work, cooking all this gluten free food, I'm not sure whether to try giving up meat too. Are you going to give up meat?

I didn't expect to find so many others had the explosive burps too! I'm not aware of having any other digestive problems, I have no pain, the only thing is I've sometimes been aware that I have undigested food hovering around for a long time, if I go to yoga I might taste it a bit when I invert. I'm planning to give up gluten and sugar and go on a really 'clean' diet. I'm worried about it being time consuming - having to do more cooking, and difficult to follow when I'm not at home.

I do lots of explosive burps, they barely sound like burps, I sound almost like Donald Duck. My kids tell me that my burps smell too. I would love to know what is causing it and how to prevent it. I burp in the morning even before I've had breakfast.

Sorry you are not feeling the greatest. It's quite a lonely place to be - especially when those around you can't fully comprehend it. I sometimes feel/hear my heartbeat in my head. I've never had a bad day as bad as yours. When I'm feeling really lightheaded I try to do some light exercises on a mat, it helps me, but, as I say, I only have mild symptoms in comparison to others. Hope tomorrow brings a better day.

I bought some sports tights from the company called 'skins' I phoned up their customer helpline and asked about the compression , they were helpful, they were aware people wear them for health reasons too. They said they were something like level 1 or 2 compression, whereas medical tights will be level 3 or 4. I have bought some medical tights too now, and I see that on a bad day they are more helpful than the sports tights. Your post made me laugh, at least you would provide some amusement for the paramedics who carted you off to hospital...

I'm sorry you aren't feeling well. Your English is great though - perhaps better than you think!

I've also been wondering if the weather effects me. I live in the UK, I usually feel okish in the summer, But feel lousy in the winter. My vitamin D levels are not too bad, so it doesn't seem to be that that is causing the difference. I've started to wonder if it is weather related. I have been feeling worse this winter than ever before, and we have had low pressure day after day, it is the rainiest, stormiest winter in my lifetime. Last year we went to Morocco at Easter and I was fine, the lightheaded ness lifted, but as soon as we came back the lightheadness returned, and finally lifted by May/June..

I find hot showers really bring on my lightheaded ness, I love hot showers, like you I find them relaxing, but I feel lightheaded for hours after. I've been finding it really hard to turn the tap to cool - I feel so cold, but when I don't I have a bad day. I find yoga helps to lift the lightheadness.

I find stairs hard too, I can run 5 km without too much difficulty (the first km will be the hardest), but I climb two flights of stairs and I am breathless. I wonder if it is somehow related to the running - the fact that the first km is the hardest - it takes my body a long time to get itself together - for the muscles to start working - maybe if we carried on climbing it would get easier when the muscles get going? I've considered stairs to be 'good' and try to use them. I realise I'm different to a lot of people on here who couldn't run 5 km, but I do still have POTS and am cognitively debilitated by it.

Hi Ice, I was also thinking of posting a question about diet. I'm also thinking of dietary changes. My thoughts for me are: Try the Atkins diet - I had always thought this was not a good diet as I thought we all needed our complex carbs, but I see that I am very bloated after a meal of carbs, so I've decided to try it, particularly no carbs for my evening meal. I'm wondering whether I'll get enough calories/ energy from this and have been wondering whether I should eat more sugar - I do a lot of exercise, and I feel I need calories for this - for a Potsie is sugar a way of getting this that is easily digested? I'd be interested in people's thoughts on this. I'd always thought sugar was bad. Try to eat easily digested foods - I'm not sure what these are, I have googled and have come up with chicken, fish and cooked vegetables. I wish I could see a POTS nutritionist to advise on this - I don't suppose there is one. Try to eat a diet that doesn't stimulate a histamine reaction. I looked briefly on the internet and one of the things you had to exclude was tomatoes which I eat every day, so I'm a bit reluctant, but I think I should try it. Bio yoghurt seems a good idea that might help with digestion. Try to eat food rich in nutrients as I think maybe I'm not getting enough - things like chia seeds, avocados, bananas. I'd love to hear other people's thoughts

I'm glad you had a good visit

Thanks for your replies, on reflection it seems I'd probably be best seeing both, which I thin k my health insurance will allow, I'm inclined to start with the neurologist and go from there.

Hi big sky, I read your post with interest, I too have been wondering what else might help. I plan to try acupuncture.

Chaos I hadn't heard that - that is interesting - I'm not sure I get why - I thought blood pooled in the legs due to gravity?

I have been working part time up to now, and looking after my three kids. When I was diagnosed in December I decided to stop working for a while in the hope that it might help to make me better - my husband works long hours so I find that I am generally on the go all the time and don't usually stop to chill out until about 9.30pm. I'm stopping work next week. One reason I decided to stop is that each year I have been feeling slightly worse than the last, I was worried where it was going to lead if I didn't. If I don't feel any better I will go back to work. Pink - that sounds like a really full on life.

Thanks Yogini, I'm in the UK and will probably see someone in London, I have a list of doctors from the Potsuk site. some of the doctors are neurologists, some are cardiologists. I was also wondering if an endocrinologist would be better as I have some symptoms of hyperadrenalism?

I have full length compression stockings - they are like leggings. I saw the bike shorts for sale, but I would have thought that potsies would need ones that go down to the ankle as I thought a big problem is the lower legs not pumping the blood back? I'm surprised your doctor suggested the bike shorts? They also sell compression tops, I don't know whether they would help to wear? I found them by googling sports compression tights. I have no idea if the cheaper ones are as good- the ones I have have had quite a bit of research done into the design, and they have had reserach trials published in academic journals.

I haven't seen a specialist yet, just my GP and I'm wondering which I'd be best seeing. I think my POTS is probably hyperadrenergic pots.

Lynnie I would urge you to give the compression stockings a go - I was a bit reluctant at the start, but they have made such a difference. If I don't wear them I feel a lot more lightheaded. I wear some pretty expensive sports ones (they cost about £80), when I first put them on they felt more like a hug than being strangled. I think they are not as tight as the non sports ones. I had no idea but - professional athletes wear them - the increase in cirulation is good for them too. The first time I went to my weights class with them on I found myself thinking - 'I've improved, must be because I've been coming regularly, I can lift heavier weights next time...' then I realised it was the stockings that made it easier. I've found with yoga that the inversions sometimes makes me nauseous - even downward dog. It doesn't make me dizzy though.

My resting heart rate is low - usually about 50. That's interesting that I'm able to tolerate more exercise than others with a higher resting heart rate. Last year my heart rate was sometimes as low as 40. When I queried this with my doctor (I did not have a diagnosis of anything at this time) he said to me that as the heart is a muscle I could consider it good that it was beating so little as I wasn't wearing it out. I think that was a bit of an absurd thing to say.

I am going back next Wednesday. I will stick with this GP - she is the one who diagnosed me, the one I saw last year is a cardiology specialist, but he didn't diagnose me. I wish I could leave my health in my doctor's hands and have her figure out what is going on with me, instead of feeling that I have to do it myself. Like yours, SarahJane - I don't think she is doing any research - but how do they have time with all the other patients to see. I have considered cancelling the appointment and just trying by myself with alternative medicine - accupuncture, medication and deep yoga breathing, but maybe I should try to get a better understanding of what is going on with me? I have a couple of new things which I hadn't thought to mention, but now I have googled them they seem quite relevant to me - I don't know what she'll make of them.

I was diagnosed with POTS in December. I do a huge amount of exercise - I play hockey (field hockey for you americans), which means I train for 1 1/2 one evening a week and play a match most Saturdays. I sometimes go running - this Sunday I ran about 5km with friends. I go to a 1 hour weight lifting exercise class once a week and go to yoga. What I notice is that on the days I do the weight lifting and the yoga I have good days, I think they increase my blood flow and my light headedness lifts slightly. On the days that I do hockey and running I feel drained - I don't think they are good for me, I think they are too much for me. I can't bring myself to stop them, I LOVE playing hockey and I enjoy running with friends - we chat as we run. My personal view is that more research needs to be done on the type of exercise that Potsies should do. I think it is likely that non aerobic exercise such as doing weights, yoga and pilates will be found to be best. I've always felt that I was the weakling in my weights class, I don't lift heavy weights. I've just started wearing sports compression tights, and amazingly I was instantly able to increase my weights. I'm also now wearing them for running and hockey and I think they are helping. I actually only restarted playing hockey last autumn after a break of 12 years. I think that it is possible that it is the hockey that has tipped my POTS symptoms into becoming a problem. I hope this helps - I don't want to put anyone off exercise, we are all different. I think my POTS may be related to too much of the hormones that come from your adrenal glands, I think aerobic exercise increases them.

I was googling an odd symptom that I have and it came up with hyperadrenalism and cushings. Are these pretty much the same as hyperpots? The websites didn't mention pots, but they did say that hyperadrenalism can cause hypovolemia. One of my odd symptoms is that my breasts have grown (I'm 44). Has anyone else experienced this? It seems that it might be related to having a high level of prolactin.

Thanks for your replies. A daily headache sounds pretty unpleasant SarahJane. Hope you get some improvement. I think I probably will ask for a referral to a specialist. I'm dreading going back to my GP, I'm wondering if I've become a heart sink patient to her. During the last consultation, when I mentioned that I have tingling in my face she suggested it might be my teeth. (Of course it's not my teeth, what is she thinking!) I felt she is really not on the most helpful wavelength. I was so gobsmacked that she said that I didn't actually say anything back to her. Also my brain doesnt work that fast at present to be able to reply to things people say articulately. How I wish my problems had turned out to be related to my thyroid or diabetes - how simple that would be.

I feel for you too, this is such a misunderstood condition, and it is so hard when those closest to us misunderstand it. Your parents sound like they are very caring, and truly concerned, and clearly they think they are doing the right thing - I can imagine they might be feeling pretty desperate at seeing their wonderful daughter so ill. I guess they must be feeling pretty helpless. What about talking over it together with a counsellor?