Tanzanite

If you want something natural use about 10-20 drops of pure tea tree essential oil in a 500ml spray bottle of water. It's an excellant disinfectant. They used to use it to clean hospitals! (perhaps they should go back to it !)

I was on prednisolone, put on a lot of weight and developed the lovely attractive (not!) moonface. I'm now off it and taking fludrocortisone for POTS. Even though I'm on that I have noticed my face going down and some weight coming off (some of it water retention) even months later it's still going down slowly. Apparently it can take up to 2yrs. The other week I looked as if I had suddenly dropped a stone of weight within days. It's as if the weight and fluid retention from the prednisolone went almost overnight. I still have a lot of weight to lose though and it'll be even harder because of the florinef and the water retention from that, it makes me look bigger than I probably am.

I took it years ago but it had no effect on me, no side effects either. So have now been on metoclompramide (Reglan) for ten years. Works fine, no side effects.

Oh yes, all the time. I'm not well enough to go out but even just searching in a cupboard for something does this to me, or the stairs but I've only used the stairs a couple of times as I can't manage them. It's so frightening, feels like you're going to stop breathing or something.

Yes there is. It wont CAUSE a yeast infection but if you already have systemic candida it will make it worse. I have systemic candida and found some relief through pro-biotics and garlic pills but I need to do the whole anti-fungal drugs thing which I'm dreading as they make me so ill.

I've had them for years all over my legs.

Just a reminder, you musn't take St Johns Wort if you are taking birth control pills as it reduces the effect of them.

I drink 3.6 litres a day, give or take. Some days I need an extra 450ml. I can drink that much and still feel thirsty! Of the 3.6 litres, about 500-750ml of that is a sports drink. Amazing for someone who used to only drink about 1.6 a day

True you shouldn't worry about these things but I can be a worrier! I think too deep sometimes Just been getting so much sensitivities to chemicals etc lately that I do worry about suddenly having a severe reaction to something including food.

It was just a hypothetical question.

If you have excess adrenaline with your POTS as a part of it, you know when say someone is allergic to peanuts, bee stings etc and they have an anaphalatic shock and need to be given adrenaline. What happens if you have to have adrenaline due to an anaphalactic shock but because of the POTS your body will produce more adrenaline because of the stress on the body as a result of the allergic shock reaction. Would the allergic reaction be less because you produce enough of your own or would being given extra adrenaline kill you? I knwo that all sounds complicated but I hope you know what I'm getting at! Can't think properly today, having a bad patch with the POTS.

It's only been happening first thing then goes away. Always the eye the side I've been laying.

Just wondered if anyone else has had this. This morning, I woke up and went to the bathroom, peeked in the mirror and saw my left eye was kind of bloodshot, as if all the blood has rushed to it. I had been laying on my left side asleep for the last hour. Is it possible to have blood pooling in your eye?! This illness never ceases to amaze me sometimes what it can do.

On the 5th day of Christmas I felt dizzy and nearly fell over, I could see '5 gold stars'....

The endocrine system can be messed up in POTS so it's possible the adrenals struggle to cope with physical and emotional stress. If I'm wrong, someone please correct me, but I believe the adrenals is where all the adrenaline comes from.

Very much so. It's so bad for me, I actually have to block my emotions all the time. Even if I am the slighest bit sad, upset etc I will always get the most horrendous stomach upset sometime in the next 12hrs. I can't even allow myself to cry anymore when sometimes I really need too because I just can't face going through the most agonising stomach pains and being on the loo for hours, vomiting and nearly collapsing. Because of having to block feelings of sadness and being upset, I am quite irritable and snappy to family, I hate what this illness has done to me. In times of acute stress, I have exactly the same symptoms as you do. Immense stress is what brought my POTS on badly.

My son had problems but it was due to illness, some time ago we took him out and now home ed. It's difficult in a little one to know what is due to what. Maybe ask her questions about how she feels, without being too leading, maybe give a few dysautonomia symptoms, anxiety symptoms and some completely random symptoms. See which one she picks. Put the dysautonmia symptoms in the middle because kids tend to pick the first or last thing thing you say. Worth a try. Also, speak to a Dr or specialist without her being around, say you're not sure if it's school or signs of dysautonmia and get her checked over.

It's good news but then why does it take a so called celeb before dr's start taking our illness seriously?! It's crazy! Unfortunately, they're not as well known in the UK so I doubt it'll make much difference to us.

A Hysterectomy If you're on the pill, you dont actually need to stop to have a bleed. They only built in the withdrawal bleed to make women feel more happy about taking it and feeling safe that they had a 'period' (yeah right!). The lining doesnt build up, it only starts to build up when you a week free of the pill because of lack of hormones.

Right, though over the past couple of years I've been using my left hand more for some reason, don't know why! My OH is left handed, he has POTS and CFS and possibly EDS 3.

I very rarely go out and when I do I have to use a wheelchair. One time, my mum was pushing me in it across the road and she had trouble with the kerb so she ended up half tipping me out of it, there was a pub across the road and some man was staring at us. We were laughing our heads off. Mostly people ignore you, pretend you're not there. At least in my experience. Funnily enough, (it was a hired wheelchair) as mum was bringing it home my son who was quite young at the time hopped in for the ride and had all these people looking at him and you could tell they were thinking, that poor boy. When they ignore me, I feel like getting out of the wheelchair, throw my hands up above my head and yelling, 'It's a miracle!' Just because people's general ignorance is to think that those in wheelchairs are wheelchair bound.

I have CFS, I dont feel that weak or tired! Do up your potassium though, it could have fallen over the last 2mths.

I was prescribed it. My specialist told me he had done a study on it with people like us and found the majority felt better taking it. He told me to take 500mg a day in whatever form I could get it, even chocolate Never had a Dr prescribe me chocolate before!!

Lack of potassium can cause extreme weakness, it happened to me.

Yep, though not quite as bad now. I also get this weird thing where if I've been in a car and then we stop I start feeling dizzy and for sometime after, also with things like lifts, I still feel as if I'm moving for ages afterwards.