Alison

I try to spend some time sitting with my feet up - I always do when I watch tv in the evenings.

I have also been thinking about nerves following this experience: I was at my physiotherapists - someone who knows nothing about POTS. I mentioned my stress incontinence. She said that she could do a quick technique to restore the nerve connection from my bladder to the brain (she may have put it differently). She did the technique which involved pressing with two fingers at the top of my bladder and manovering my legs. I didn't think it would have any impact. A few days later I was using my electronic pelvic floor stimulator and I noticed a difference. Whereas lately I've just felt a sort of buzzing sensation when I use it, on that day I felt my muscles contracting in response to it. After a few days this sensation stopped and I went back to feeling the buzzing sensation. The technique is called Emmett. I have arranged to go back for more. No idea if it will help. I started a vegeable based diet last week and I've noticed that I get a bit of a contraction with the electronic stimulator this week, I'm wondering if the diet will help the nerve connection in some way too?

I think that probably 90% or more of women think that their husbands don't help out enough in the house and with the children. I certainly think my husband doesn't (he would give a hurt look if he saw I'd written that). We women are also more touchy about this when we are pregnant and probably struggling a bit, hormones up and down. I can see you have a really difficult situation - even if your partner understands to some degree, she is probably struggling with being pregnant and looking after two children and just wishes you were well. Are you able to sit on the bed while playing or reading to the children? In that way you would be helping as well as putting your feet up - I often play board games in bed with my kids?

I had autonomic testing this week. I've never fainted before, but after being upright for so long I started to pass out. They took blood straight after. I think I read that this blood test is to look at your epinephrine and norepinephrine. Just before I started to faint I could feel that my body had mobilised a huge amount of adrenaline. My question is - does this happen to everyone just before they faint - if so what is the point in doing the blood test - what is it really showing? I'm trying to get an understanding of it so I know what to ask the doctor when I go for my follow up. Thanks.

Does it relate to the heart then?

"all gone" is an interesting phrase for it - who calls it that?

I've also wondered if my twitches/jerks were related to epileptic activity?

Mine is more like a line of brain cells doing a little twirl for a second, perhaps whilst driving over a hill. Do you think it could be some kind of epileptic activity? Or what?

I feel lightheaded, and also on some days I get a number of moments that last about a second where I get a dizzy sort of feeling in my head - it does not effect my balence in any way, it is almost as if there is a tiny seizure in my head - but I don't think it is a seizure. I notice I get them more if I have a hot drink, also after a meal or last week I, perhaps foolishly went to a yoga class in a warm room and had a lot of dizzy moments the next day - I think I got deydrated. Does anyone else get this dizzy feeling. I have been thinking maybe it is caused by missed heart beats? I don't really know how to describe it to my doctor.

I also sometimes find I can't think straight, I forget what I was doing. It's horrid! I feel kind of spacey at times.

My doctor told me recently that I am hyper mobile - I don't know if that means I have EDS type 3. I think I felt the opposite to you on getting that diagnosis - sort of relieved. Relieved I have an explaination, I know what is causing it and I think there are things that can be done to help. I've always felt that a weights class that I go to helps, I'm going to try and go more often (I always lift moderate weights), I'm hoping that dietary changes will help.

Your physical symptoms sound pretty unpleasant, hope you get to the bottom of it.

If overdoing it is related to the twitching it is strange that it is coming out now for me when I have recently stopped working, and am now doing less, and am presumably less stressed, my job was a bit stressful. I'm still quite busy being a mum, but have more time to be a mum and take care of myself.

I usually feel bad in the winter and okish in the summer. However I had a bad day yesterday too, I thought it was becasue I'd gone to a yoga class the previous day in quite a hot room, but maybe it was the change in the weather - here in the UK it was the first warm day of spring (don't know where you are, whether you are in the UK too).

I don't take much medication. It seems that it is a phenonema that is not understood - there must be something causing it. I wonder if they could get to the bottom of it it might give a clue to the cause of other problems?

I started having twitches about 3 months ago, about one a day, now I am getting them all the time, sometimes one every couple of minutes. Anyone got any clue why? What it means? I have googled and google talked about low electrolyte levels (dehydration) and low magnesium. I have re-started taking magnesium (I had been forgetting to take it). I have bought some bath salts as I read these can increase your magnesium level in your tissues by 30%. I haven't used them yet as warm baths make me lightheaded, and I won't enjoy a tepid bath. I'm wondering why I'm getting the twitches now, I've had the rest of my symptoms for years?

I use 'zeros' they are a tablet that you add to water, they have zero additives. I mainly just have them when I exercise.

Thanks for you support guys, it went fine, I kept my eyes closed, and nearly fell asleep.

I meant to put 'hypermobile' in the title, by the way.. My joints aren't particularly loose, I've never dislocated anything, nor can i I can't bend my fingers back. Two of my daughters have very long fingers, I think they might be hypermobile, and I was wondering if the long fingers is an indication of something. Is my dry cough and the fact that I choke quite regularly related?

Thanks, I was wondering if you had a way to call out - not that I will, but knowing that I can will make me feel better I think.

I have this, but only the side I lie on, I have assumed that it is because my circulation is so poor I can't push the blood round the side I am lying on. It s a pain as it wakes me up. I had wondered about wearing some kind of compression on my arms at night.

Thanks for the advice, that makes me feel better, I had thought about a cough sweet, but didn't think it would last. I also have a slight tendency for claustrophobia. I'm just hoping that if I close my eyes and relax I'll be ok

Has anyone had one? Will it matter if I cough? I have this dry cough and usually sip water to manage it - I'm not sure how I'm going to manage this during my MRI.

I was told I was hypermobile this week, which I hadn't realised. I'm curious as to what proportion of people with Pots are hypermobile? and whether there are differences in Pots for people who are or who are not hypermobile? From what I've read about hypermobility since being told the whole thing now makes sense to me . I read that to counteract the slack blood vessels your body makes adrenaline, so hypermobile people can lead very busy lives without feeling tired - this is me. I'm finding it really hard to change as well, though I can now see how destructive is given the symptoms of brain fog I have.

How to switch off anxieties is such a hard question to answer. Is it partly because none of your doctors has taken responsibility in sorting out your health for you - you feel that you have to do it yourself? I'm only suggesting that because that is what I fel I have to do and what I feel many if the people on this forum have to do. I'm sorry your POTS is still so severe after this length of time.