Alison

So sorry to hear of your horrible experience. A few months ago someone else from Ireland posted a really similar story on here - I can't remember his name - I think it was here. I wonder if it was the same psychiatrist? You certainly seem to have trouble in Ireland with acceptance of this condition.

Am I the onlyone who feels the opposite - I can manage a slow run, but when I walk I feel lightheaded. I'm also a tennis player, I played tennis tonight.

I've bought a yoghurt maker, I'm planning to try coconut milk yoghurt. Has anyone got any tips?

On Christmas day my kids are opening all the presents, excited to find out what they are. I too am sometimes sitting there just as curious, I bought and wrapped them but have no idea what they are.

Rosey, so great to hear how well you are doing with your dietary changes. I've been trying to decide whether to try the paleo diet, but have decided not to for now, I don't see how I can manage without grains - rice, oats and quinoa are the one's I'm mainly eating. I also feel that I'd like to try a diet with not much animal meat, as advised in the China Study, though I want to carry on eating a bit of organ meat and bone broth. Hope you get to the bottom of your weight gain Ifreem02. If I put weight on it also goes only on my mid section. I have skinny legs.

Friedbrain is it a from of neuropathy that causes it - the nerve connection to the brain is not working? I to make a lot of urine. My bladder quickly fills up and then I am really uncomfortable till I can get to a bathroom

Thanks for that link. All this healthy eating is so time consuming - in the preparation. It's taking over my life a bit. And I'm so bored of food. I wish I had a chef.

I agree with you it is so restrictive and so hard. I haven't stopped eating potatoes which is maybe helping me to stick with it, i had been feeling that eating the potatoes - roasted or baked - felt too good to be allowed. I haven't figured out what is bad about raw olive oil so have still been adding that to salads - I thought it was a good oil? I saw a specialist pelvic floor physio yesterday, I have EDS type 3, she was telling me how the EDS means I have poor quality collagen. Got me thinking about bone broth, which I have started making, and whether eating this could improve my collagen. Has anyone considered this? I generally boil the bones up for about 2 hours, I read on the net that you should boil I.t for 12-24 hours - does this really get more stuff out of the bones? I was glad I looked it up as I hadn't known to add vinegar which the net also says removes more goodness from the bones. I'm glad the diet is helping Mike.

Let us know how you do on the Wahl's protocol, Makemeerised. I've never tried mashed cauliflower, but will give it a go. Ifreem02 that's is so surprising that you are having weight gain on a plant based diet. Have you found any explaination? I'm also reading the China Study. It is a bit of a contrast to the Wahl's Protocol book. I'm undecided whether to eat meat or not having read both of them.

I've been reading a lot of nutrition books and have decided to try not to use supplements, but to try and get these things in my diet. I'm eating platefuls of vegetables and juicing. Sodium is present in many foods, I haven't got around to researching the ones it is most prevalent in, I know one is celery (I've never really liked it but am eating it and juidng it). I add quite a lot of salt to my food (makes the vegetables more papatable), but I'm going to try cutting it down to see if it makes a difference. I had been adding loads and loads to my food, then had a blood test which showed I was low in sodium. I think this is because I was drinking so much water - I decided that simply adding salt to my diet may not actually be achieving anything apart from making me very thirsty. I've also bought Himalayan bath salts, I read that bathing in epsom salts increases your level of magnesium in your tissues by 30%. I have bought a sports electrolyte supplement called Gu which I used to use a lot, don't know if it helped. I'm also in the UK. And also have no guidance from anyone.

Sorry you are having a bad time XX

I've been wondering about this too. I know women who have trouble with their pelvic floor (me) find it worse just before and during their period. I have been wondering what physical changes there are that seems to make the pelvic floor muscle weaker at that time? I'm rading the China Study at the moment (a nutrition book) one of the things it cites is evidence that a diet low in animals and high in plants lowers your levels of estrogen. This sounds like it would be beneficial to a person with POTS as the symptoms are worse when estrogen is high?

I'm not eating chocolate so I won't try the white chocolate. I haven't had any sweets, cakes or biscuits for 6 weeks, nothing with any glucose in it. I feel that this is one of the things that is helping me feel better. Does anyone eat chia seeds? After reading in Wahl's book about how seeds start producing a good enzyme if you soak them for 24 hours at least before eating I've been soaking them. What I am wondering is if I still need to grind them after soaking them - I read we get more of the nutrients if they are ground.

Thanks for the suggestion about eating almonds Makemeerised. I am eating quite a lot and don't want to eat too many, I'm also using almond milk. I also found Wahl's book to be inspirational. I'd like to try her full diet, but I'm going to hold off for now as I am getting so much improvement without it. Goodluck on the diet. What keeps me going on my diet plan is the thought that I should eat as much as I possibly can - and the thought that this is my only hope really of recovery. Westernmess I'm loving coconut old too, and have also been putting it on dry hands, but it doesn;t seem to help them. Looney mom is coco butter easy to get hold of? I've never bought it, but will try it. HAs anyone tried the full Wahl's diet?

I'd be interested to hear how you find it if you try it.

Six weeks ago I stopped eating gluten, dairy, eggs and glucose. I'm starting to feel a bit better. My head feels really different. It's hard to put it into words, it makes me realise how odd my head had been feeling. I couldn't say what I feel is normal now because I've no idea what normal ,is - ive long since forgotten. I feel sort of 'smooth' inside. I'm still burping, my muscles are still twitching, I'm still a bit lightheaded on some days. I'm sleeping really well, I'm now falling asleep easily and sleep about 7 1/2 hours without a bathroom trip. I really believe this healthy eating is helping, and I'm convinced I'm going to continue to feel better as more time passes. I've no idea what aspect of the diet is responsible. I'm eating a huge amount as I'm tring not to lose weight. I must be getting a huge amount more nutrients than before. I'm trying to eat every vegetable i can find, particlularly leaves, lots of seeds, nuts, a lot of quinoa. I started off not eating meat, just fish, but after two weeks went back onto meat. After I read Wahl's protocol I started eating organ meats and bone broth, yesterday I bought seaweed. I started off making vegetable smoothes but now have a juicer as they made me more lightheaded. I'm thinking of trying some kind of anti inflammatory diet, I'd also like to try the Wahls' diet - but I'm worried about losing weight on it, also not sure if my stomach will tolerate all those veggies. I've been eating Wahl's fudge daily to prevent weight loss, but the last couple of days the thought of it makes me sick, I'm hoping to be able to eat it again as I felt it was helping my head to feel better. I'd love to hear other people's stories, what wonderful things are you eating? It's so wonderful to feel a bit better.

Sorry you are feeling miserable. Sending you some hugs.

Sorry you are having such a bad time. My symptoms are a lot milder than yours, but I have also reached the point of feeling that the doctors just aren't/can't help. I live in the UK and I think we have less access to doctors who might 'get it' here (depending on whereabouts we live). I think my husband was somewhat frustrated with me yesterday. I was driving and my husband (sat beside me) commented that he was wondering if I was ok to drive given all the jerking I was doing (I too wondered that when the jerking first started, but I seem to be ok). He asked me what the doctor said about the jerking. I had to confess that I had never mentioned it to the doctor.

I've just read The Wahls Protocol which someone on here recommended (thanks so much whoever it was, its a fabulous book). This describes a healing diet which involves ketosis, but she says it is a different type of ketosis as it is a high fat diet. I don't fully understand the difference. she gives a compelling argument for why this is helpful, and they are doing research on the diet with people with MS, and are seeing promising results. I would really love to try the diet ishe recommends, but my problem is the opposite of yours, I am losing weight, and don't need to. I've given up sugar, dairy, wheat and soy and am eating lots of vegetables, grains, nuts and seeds, plus fish and meat. I'm eating a huge amount, and juicing too, so am getting lots of nutrients in, but Im gradually losing weight. If my weight loss continues I'm going to have to change something but I have no idea what. The Wahls book gives a recipe for a high fat treat for if weight loss is a problem, which I am eating daily. Maybe I need to eat more of it.

Sorry to hear about your concussions Jen. I can identify with not wanting your husband to worry. I also feel that way.

I read that only 30% of people *** POTS pass out. Not sure how 'people with POTS' is defined as most of the population with it is probably not diagnosed...

Thanks I had the feeling I didn't quite get the constriction / dilation issues. So we have dilation in the stomach area and feet, yet constriction of the extremities when cold?

Is it the veins constricting that causes blood pooling? If so then would it be a good idea to avoid hot drinks (and food) as heat causes constriction? I have noticed that hot drinks sometimes make me feel worse (even plain hot water). Has anyone figured out what can be done to reduce constriction? I've been thinking of trying cold showers, but each day I chicken out.

I'd never heard of it. I've looked it up after reading your post. I suppose anything is worth a try.

Has anyone tried this? Some Buddhist monks demonstrated that they could keep warm in extreme temperatures by doing vase breathing. I have tried it (following instructions online). It feels beneficial. You do abdominal breathing without completely exhaling between breaths (if I've got it right). Maybe this means your body continues to be able to absorb oxygen from the lungs even on an out breath?