misseb

I have but I get so dizzy and fatigued I have stopped. It was a GI specialist in London. He said it's really good for POTS.

Yep. Im dairy, gluten, sugar , fruit, fermented products free, and follow a low histamine diet. And not eating in the evening is a game changer too for me.

Thank you. Responses mean so much. I did see Prof Aziz. I really like him. He referred me for lots of tests. But my insurers pulled out. I can't afford the tests and he doesn't practise on the NHS. So I had to see another Dr. I'll keep pushing for another referral.

Hello hello I have had a terrible time with a GI specialist in London. She has put all my GI problems down to an eating disorder that I had 20 yeas ago. I just can't get her to agree that there is a relation between POTS and GI problems. She u turns back to the eating disorder. She's a terrible bully in the room too, has me sobbing. In my last notes she wrote "in all my knowledge there is no autonomic disorder that is affected by carbohydrates or meal size." She has discharged me as she says I am failing to accept the professional advice given and that they can no longer help me. I'm really struggling. I can't eat after 4pm otherwise I wake tasting the food and I have terrible autonomic symptoms. I last ate a small meal in the evening a few months ago and was terrible for 2 days. Have to be so careful what I eat or im in a fatigue state. Does anyone know of a good GI Specialist in London that works for the NHS ?

Yes, and my ears are itchy and sore inside too. But I have MCAS and if I have controlled my histamine well then it goes.

I was told to take 1200mg of magnesium citrate a day, but I can't get over 200mg without having autonomic symptoms. I am stumbling around, and really light sensitive the next day if I take more.

I get it. I don't recognise my street. I'm constantly getting locked out of my bank accounts. I've left the front door open and gone to work. I say the wrong words. Can never remember the names of things. Start a sentence and then am throwing in extras words to give myself time to remember what I was going to say. When really bad my speech is slurred too. My POTS specialist puts it down to my depression. But I know it's not. It's too surreal to be depression. And it goes when the POTS symptoms lessen. Not eating after 4pm has really helped for me. They still don't know what is happening to me while I sleep. But if I eat too late then I have terrible autonomic symptoms the next day. And the brain fog is appalling. I have cried on waking as I know what the day is going to be like.

Mine is low. Sadly I'm unable to tolerate any more than 200mg of magnesium a day despite being told I have to build up to 1200mg. Anymore than 200mg and I'm a stumbling fatigued Potsy mess the next day, and waking up is a real problem.

Thank you all for responding. I haven't been tested for an auto immune disease but will pursue that. DNRS sounds incredibly interesting I will look into this too. I am open to trying anything right now, and one thing I am learning on this journey is that I have to stay curious.

Thank you so much. It's hard not to feel like you're going mad after a moment like this. I'm finding this journey so lonely and today was another blow. I was referred by my POTS specialist to her and she has knowledge of EDS. I couldn't help but feel that she took pleasure in saying all this. Quizzing me on why I thought things were a trigger in a horrid cruel way. She was even saying that rapid gastric emptying is not possible with POTS and debunking things my previous GI Prof had diagnosed - Prof Aziz - who has multiple papers and even personally raises money for EDS. I can't continue to see him as my private insurers have pulled out. I am intolerant of all high histamine foods even down to tomatoes, and fermented foods are a killer. I have been tested for histamine intolerance by a mast cell specialist immunologist but it came back negative in the histamine tests. But it's often hard to test for histamine intolerance. I'm wondering if histamines simply trigger my POTS. Garlic and onion leave me in bed the next day shaking and with blurred vision. She again said she doesn't see how that is possible. Good advice - I think I'll go back to my autonomic unit and ask to be seen by someone else.

I have POTS and Hypermobile EDS.. Suspected mast cell problems. I have chronic fatigue and presyncope after the smallest amount of food and fermented foods leave me shaking, hungover and bring on POTS attacks the next day. Just had a tough first meeting with a Gastroenterologist. They basically told me that my assumed food triggers for POTS are psychosomatic. That there is no proof that a large meal can cause a fatigue attack more than a small. She sighted POTS as a benign disorder. They pointed at my childhood trauma as being the cause of my poor relation to foods. That my brain is wired to see certain foods as unsafe. And that my fear around foods is now causing the symptoms. I tried to explain that a fork full of rice can have me gasping for air and unable to move for hours but she wasn’t listening. That chocolate leaves me rushing with adrenaline. That my limbs swell after foods but she said I can’t see a connection between foods and POTS. She probed me “ What do you think the treatment for chronic fatigue is Emma ?” Through the tears I said no it is to encourage movement. “Well then you need to encourage yourself to eat.” I just sat and sobbed throughout the consultation. Felt bullied actually throughout and left exhausted having to fight my corner. I feel in a spin and so down right now. I’ve lost so many days to eating the wrong thing and it setting me off for a few days unable to do anything. I’m walking a type rope with foods and I really needed help today. Only yesterday I was on the sofa for hours unable to stand not recognising my surroundings after eating lunch. Want to stay positive and open it up and see if anyone else has had this reaction before. To stay open and think that maybe is it in my head ? Can I therefore try to change this ? Any one have any knowledge on the psychosomatic relationship between POTS and food ?

I tried it and it brought on palpitations and I woke up feeling like I hadn't slept, all adrenally and flushy. Guess the blood didn't like going to my feet.

I have H-EDS, POTS, GI probs and MCAS and a whole load of other EDS things. The EDS is the cause of the POTS I have been told by my autonomic specialist. The collagen defect has caused both nerve damage and vein damage in my body leading to POTS. EDS collagen defect manifests itself differently in each person, so some may have EDS but not POTS, but then might have others things.

Thank you so much for taking the time to respond. It’s the first time I’ve posted things here and knowing you are out there to help means the world. I find this illness so isolating. The mornings aint sexy. I’m drinking a litre of salted water before getting out of bed and allowing 30 minutes to make the move from bed to standing. I have had to eliminate a lot from my diet and now have to control everything. These have gone: all high histamine foods, fermented foods, nightshades, citrus fruits, strawberries, tomatoes, spinach, shellfish and most fish, yeast, vinegars, chocolate, alcohol, wheat, all dairy now only have coconut, refined sugar, carbs - in high amounts, garlic, entire onion family, MSG, processed foods. Some of them ruin me for days. I now shop online and don't go to the supermarket to avoid the temptation of brightly coloured packaging screaming my name. The low histamine chef has been a saviour. I have tried to follow Deliciously Ella but there are still so many things she uses that I can't eat. I have managed to reintroduce eggs, avocados and salmon. Fan fare and complete mega happiness and this gives me a protein pass. Garlic and onion I’m struggling to work out. I wonder if it’s the diuretic effects of them. If I have a tiny bit before say 4pm I can manage the next day, after 7pm it’s game over. In and out of bed the next day blurred vision and staggering unbalanced. I wonder if it’s because I’m able to get my fluids up more if earlier in the day than just before bed. I actually wonder if this is the case for eating in general for me. If there is a sodium levels effect from eating later in the day. I’m drinking about 4 litres of water a day and having 10g of salt. I also can’t let my insulin levels drop too low otherwise I fatigue really badly when I do eat - however small it is. I have to snack every two hours - nothing over 150 / 200 calories - or it’s fatigue. And it has to have something naturally sugar’d. A too keto a diet is really bad news for me even though it would make sense to work given the carb thing. This is a stream of words. Sorry. But maybe something in here might also help someone else. Big love. xxx

Hello I have EDS, POTS and MCAS. I struggle so much with the evening meal. Can't eat more than about 200 calories after 7pm otherwise I am zonked out for nine plus hours and then can barely stand the next day and feel terrible. I have tried increasing my fluids and salts after eating in the evening but it's not helping. If I have something important the next day I can't eat later at all. During the day I can only eat small amounts too otherwise I'm in a state of fatigue. I can't seem to work out the logic of the evening meal and was wondering if anyone else struggles too.

I take magnesium and was told to go up to 1200mg daily. I raised it from 400mg to 600mg last night and I feel awful today. It brings on POTS attacks for sure. I can hardly keep my balance today and am really detached sensorially. Think I'm going to stop it all together.