galatea

Sitting upright in a chair for long is almost like standing for me. I would recommend a foot stool so your feet are higher (this helps so much!) and constantly changing position, especially sitting with your feet up on the seat.

I’ve had every single one of these – it totally defines the experience of having POTS. The one that bothers me most is ‘I get that too’, I just want to scream ‘NO YOU DON’T!’ Unbelievable the amount of people who when I try to explain my symptoms and condition just refuse to take it seriously (including doctors of course).

I started acupuncture but I’ve stopped it now because it’s impossible to know what’s going on with changes of medicine and dose etc. If I’m eventually drug free I’ll definitely give it another shot, but the whole ‘natural balancing’ part, for me, didn't really seem compatible with medication changes. You don't lose anything by trying though!

I have that quite often in my legs and feet, when I have one leg over the other – like I can feel all the blood going rapidly backwards and forwards, so strange!

I’ve done 8 hour flights several times with no problems or consequences. What saved me was carrying a small portable fold up stool for all the queues at the airport. Also, if you’re going with someone, I’d recommend they do everything (get luggage, queue etc.) wherever possible and then join them at the end while you relax somewhere.

Yogini, I haven’t tried any other medicines apart from midodrine and fludrocortisone. I have seen a cardiologist more locally but he didn’t seem to know anything about pots, so I really only rely on the person I see once a year in London.

Hi Corina, Interesting to hear what you say, how long have you been on it for? Sorry to hear about your gallstones, but it’s good to hear that overall it was worth it for you. Unfortunately I only get to see my doctor once a year, but I suppose if I have the octreotide trial I’ll have to see him then (hopefully!)

My POTS doctor is considering putting me on octreotide, but from what I’ve read it’s used for people who have a lot of gut pooling/ feeling terrible after meals. I only have this a bit, and have mostly managed this by having small frequent meals. Does anyone know anything about the long-term effects of this drug? I really don’t know whether to consider it as it seems so invasive and powerful but works so well for some people! Also, the doctor says I should just carry on with the florinef and midodrine despite no benefits after 7 months, he hasn’t given me any reason and he never answers my questions when I email him, can anyone thing of any reason to carry on taking them? I’m considering just coming off them slowly despite what he says.

Not sure if you’ll all be convinced of this but I’d be interested to hear if anything similar applies to any of you. I think I’ve had POTS to some degree since early adolescence, but stopped being functional in my first year of university. I think what might have triggered the sudden drastic decline is an excess of adrenalin because of essay crises and being up all night once a week for a period of time. So because I already had ‘low-level’ POTS my body couldn’t cope. If I’d been diagnosed earlier I would have been more careful and maybe it would never have got to this! Anyone else have something similar or feel that adrenalin affects you a lot?

Great! I suppose we’d choose location according to where most people live. We’ll first have to see how many people are interested.

Would it be unthinkable to organise some sort of informal meeting? I’m not sure where it would be, but definitely somewhere comfortable where we could put our feet up and relax maybe bring some salty snacks. I know travel is hard for a lot of us, but it would be nice to share experiences.

I did the Dr Levine exercise project 2 years ago for a full 4 months with the hope of the cure that was half promised. It required a lot of discipline but it didn’t make me feel any better- the levels of exercise were really exhausting. However, after the four months I gave up and for the following 3-4 weeks I felt almost completely better. After that I went back to my normal state. I worked out that I felt so well when I’d just given up because I had very strong leg muscles to pump up the blood, but without the feeling exhausted with the exercise. I’ve read and been told that the only thing that improves the prognosis for POTS is exercise, and that patients who have an exercise routine get better sooner. Also my doctor said that medications are only useful in that they can allow you to do more exercise. I personally find that I feel worse if I don’t exercise every day, but I can’t do more than a half hour walk at the moment.

Thanks for the interesting replies! Good to know I’m not the only one. I sometimes think that a lot of ME patients actually have POTS but never get the diagnosis. I was diagnosed with ME originally but the official criteria didn’t completely correspond so I had to literally beg for the tilt test after reading about POTS on the internet. Just a thought, but maybe CFS doesn’t actually exist, and is just the name they give you when they don’t know what you have. A lot of people diagnosed with it seem to years later discover they have some rare disease or illness. Possibly there are a variety of illnesses which haven’t even been discovered yet. When I asked the POTS specialist about the fatigue aspect he just said that they don’t understand why some patients experience severe fatigue and others don’t. It’s unfortunate that the doctors understand so little about the fatigue aspect of neurological illnesses. I just sometimes wonder if I have something else as well, especially because even when the medicines I’ve taken have had some effect on my bp and heart rate, my tiredness/weakness levels don’t improve, which is my main concern! Dianne, thanks – I’ll look into that website.

I live in the UK, and am registered with Prof Mathias’s clinic. Anyone else in despair at the waiting times?

Since a lot of the symptoms are similar and a lot of people with POTS have extreme fatigue, how do you know if it’s just POTS or ME as well? Also, does anyone else get episodes of 10 mins-2 hours in my case where you’re too weak to move or even talk? I think it’s called ‘collapse.’

Does anyone else get severe blood pooling at night? Any ideas about why this happens since I’m lying flat? I always sleep with a bucket of cold water next to me, and have to get up after a couple of hours because of the boiling sensation in my feet- I put them in the water and the blood shoots straight back up again and I can go back to sleep. I think it’s because the blood vessels constrict with the cold. When I asked my POTS specialist about why this happens he just looked confused.

My weirdest is probably that I sometimes get grey feet, no idea why. That's when they're not purple/red.

I should have said earlier that it’s more commonly called Migraine Associated Vertigo (MAV) or Vestibular Migraine. Here’s a useful overview: http://emedicine.medscape.com/article/884136-overview#a1

Does anyone know what proportion of people with POTS are able to work? I had to drop out of university and haven’t really been able to do anything because of the extreme fatigue.

I saw a neuro-otologist. They did all sorts of tests to rule out other conditions. I’m going to start doing the diet I found on this website although I’ll have to come up with some ideas about what to eat instead. http://balancemd.net/uploads/Migraine-Related_Dizziness.pdf

Hanice, yes when I’m really dizzy even turning my head can be really dizzying. I normally go through worse and better periods, but when I’m bad, I can’t look to the side at people when having a meal for example. I have to get people to sit next to each other to be able to talk looking at them so as not to turn my head. They’ve now told me that restricting head movements is the worst thing you can do and that you have to force yourself to look around. At first it feels terrible but it’s really important to do this. If you sort out the problem while you’re young the brain can somehow ‘re-wire’, but if you leave it for too long it’s harder to cure. If you think you might have this I would really recommend getting a referral so that they can give you all the eye exercises. I hadn’t been able to read a book in over a year, which I always thought was due to mental fatigue caused by POTS, now I realise that it’s been partly a dizziness problem even though I wasn’t always consciously dizzy while trying to read. I think it can also cause quite a lot of mental tiredness and in my case a lot of nausea. Corina, thank you! This is the first time I use a forum

I was diagnosed with ‘migraine associated dizziness’ which is dizziness without the migraines. People who have this often had migraines in adolescence even if never again. Years later you get episodes where head and eye movements, especially side to side provoke extreme dizziness, making even reading and looking sideways really difficult. I always thought it was just POTS, but it turns out it isn’t. I was referred to a neuro-otology clinic and they’ve given me eye movement exercises which will hopefully cure it. It's a very slow process though! Just wanted to raise awareness about this in case it’s common for others with POTS, especially since something can be done about it. It's just as debilitating as POTS.