Tanzanite

If you take Florinef in the evening your cortisol levels will be sky high as it does have some cortisol like effect. I've always heard that it's best not to take it late in the day as this can long-term cause your adrenals to become affected and possbily cause Addisons.

I have been taking it spaced out throughout the whole day otherwise I end up peeing every 2mins at night and don't sleep but very worried bout taking it at night. So I'm trying to change it now to taking it first thing, then around 2/3pm and thats it. Even though the specialist says take it all in one go first thing but that doesnt work for me and I think most POTs people. He doesnt know a huge amount about POTS , I think he only knows that you take Florinef for Addisons and you take it all in the morning, hence what he said to me.

The other day I learnt a technique to stop you passing out. Apparently pilots do it when they're battling g-force. You tense all your muscles and kind of strain as if you're constipated! Though I wouldn't fancy doing it when you're in a store! LMAO!

I always thought if you strain you're more likely to pass out (if you're doing it for bathroom reasons!) but I heard this technique from a Dr.

I take a capsule with 4 billion in them. Meant to take 2 a day.

There's has been some talk that the yoghurt drinks aren't worth the bother. Yakult is the best one. But that capsules are even better as more are likely to reach where it's needed. Then they say you have to get one thats been tested to see if there is actually as much in there as they say there are! Many don't. I know one of the best was Multibionta which is vitamins and minerals with probiotics.

Unfortuantely, the best ones seem to be rather expensive. I'm paying ?15 for one bottle of capsules.

I have and it turned out to be my ribs underneath and to the side. Not sure how you spell it, something like chostochondritis.

Absolutely! Incredibly familiar!

The only way I know not to get it is not to do much when you have the surge of wanting to get up and do things. Incredibly hard not to give in to it. But if I do then I end up being *high* for up to 2-3 days and I can't sleep either.

Maybe the others will have some suggestions.

The people where you get your Gatorade/Lucozade Sport from think you must be such a dedicated athlete for buying so many tubs of it at once and so often (I always feel like they might stop me buying it anymore!).

When you don't know what season it is because your a/c is always on.

When people start saying they can't wait for summer to come you look at them like they're demented.

When you don't understand why people think it's so great to drink, we feel dizzy and disorientated most of the time, why would anyone want to inflict that on themselves?!

Love the people buy you bedding one! I think it's worth buying really decent, luxury bedding as I'm in it all the time! Spent so much on bedding it's crazy! One set of purple velour bedding (just over ?200) 2 sets of micro fleece bedding, sooo comfy! (Just over ?150) and a black fur throw (just over ?100). Makes me feel good to have lovely comfy bedding that also looks luxurious.

I also think the faking being normal is brilliant, so true!

Just reading your post has made me cry, got tears running down my face now. All I can offer is empathy and hugs.

I don't crave salt. Have you had your adrenals checked because problems with that can make you crave salt.

My whole life. I'm 29 in 3 weeks.

Tanzan

You wrote your blood sugar was "8". That had to be a typo!

No, wasn't a typo. Was definitely 8. They done it by pricking my finger and sticking it in a monitor. Maybe they use different levels in this country. I think it's meant to be about 5. I know 10 is high.

My BP goes up when standing to 140/90 not sure if it's only been that way since the Florinef, didn't have a monitor til I was on it. But a lot of the time I suspect it falls because I get dizzy and lightheaded when standing for awhile. If I lay down it goes under 100/70 at varying levels and gets worse the longer I lay down, I start to go all spaced out and lightheaded. My whole body goes numb and my heart races and I can't breathe properly. If I sit my BP is around 120/80 though sometimes can be less.

My pre diabetes test was normal. Yet when I had to go to ER in an ambulance, they took my blood sugar levels and it was 8 and I'd had a peice of toast and a glass of Ribena about hour and a half before. Apparently that's close to a high reading.

Not the noises but I get the choking, oh so many times a day. Because of it I now have a very poor gag reflex and always seem to be heaving or vomiting on something, even my own spit! I get an awful rush of heat up my body , into my head and down my arms, my arms hurt so much and feel weak and tingy. My head hurts so bad it feels like it'll explode and of course the gasping for breath.

It's really not nice. Some days I go without any choking fits, others I can have probably 20 a day. I can sympathise.

Yes, that people with POTS are meant to have low blood volume.

So we're meant to have low blood volume. Shouldn't we be getting transfusions every so often? Would it help?

Message received I have been on metoclompramide/reglan for years. No problems here, works well for me. My OH is on it too and he's fine too.

I take metoclompramide which is an anti-sickness drug and also speeds up the rate of things going through the stomach. Domperidone just turns off the vomit centre, not sure why they give you this instead of metoclompramide.

I didn't even have a TTT. They diagnosed me by symptoms but then I had practically every symptom going and was in a real bad way at the time. Plus I already had a dx of Autonomic dysfunction from 5 years ago so it seemed pretty obvious.

Could be a migraine as you can get various visual disturbances with it but you might want to see an optician too as some fairly serious eye probs can cause a black dot(s).

It made me extremely lightheaded like I would pass out every 2 mins.

I have had PCOS since periods started at 11 as well as endo. I also have a very low oestrogen output and high progesterone when it shoould be low and vice versa.

Every Dr I ask says I can't use it because the risks of a blood clot are much higher with a lack of mobility. I've just asked my Endo again but he'll no doubt say no.

Welcome. Try apricots, they have more potassium than Bananas. I have to force nanas down everyday, making me feel sick thinking about it!

Can I ask those that are on bc pills what your level of mobility is? I was on the pill and it did wonders but they took me off it because I'm in bed all the time apart from general pottering about. My periods are a nightmare, I go months without one then I suffer so much when I do get one, it's awful. Also my hormone levels are terrible, I'm practically making no oestrogen but no one seems to care and wont do anything about it.

I get a lot of headaches due to my neck problem with the EDS. But all my life I've had the dizzy then headache or vice versa. I used to get vertigo attacks that would last 16hrs and if I took a migraine pill, it seemed to stop the vertigo a lot of the time but I wouldn't describe the headache as what you'd think of as a migraine.

How about, 'you look like you've put some weight on' That might stop them LOL