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Everything posted by misseb

  1. Thank's so much for taking the time to answer. I will look into it.
  2. Hey People I have hEDS, POTS and MCAS. I can be lying on the sofa feeling utterly rotten, shaky, breathless, blurred vision and the usual myriad of strange feelings these disorders bring, stagger to the swimming pool, push myself and do a fast swim and raise my BP, and then I walk away from the pool symptom free and feeling like a different person. For the rest of the day I can eat without crashing into fatigue afterwards, and can eat a wider range of foods etc. It doesn’t add up as due to POTS I should be exhausted and the chlorine should nail me. If I am stressed at work or busy I don’t crash after food either and don’t have fatigue episodes. I’m at my worst when I am carb, sugar and caffeine free - which doesn’t add up as they are POTs triggers. I have to eat something sugary every 2 hours to stop me dropping. Roads are leading me think it’s cortisol levels and sugar levels at play here. I can’t get my doctor to refer me even though my private POTS specialist wanted all endocrine tests carried out so going to pay now. Feeling ready to move things along again and get more answers. If anyone has any tips I'd be so grateful. Thank you. I am not sure what to test for - thyroid, cortisol levels etc. Or what this could be.
  3. Keto makes me so fatigued now. I need some sugars or I'm crosseyed, fatigued and useless. But fructose spaces me out, gives me tremors and fatigues me. It's like walking a tightrope to keep the show on the road as best I can. I think I'm going to start monitoring my blood sugar. When I come out of an attack I'm craving salt and sugar. I think we also retain a lot of fluid at times due to the salts, dehydration, and general body confusion. When I'm bad my fingers feel swollen and fluidy - maybe that is something to do with your weight changes.
  4. Yep. I am at my best when I am snacking every 2 hours. If I leave it any longer than say 4 hours I hit a wall and that's it for the day as I am totally faint, tired and exhausted.
  5. Interesting. Unlike most POTs sufferers I am safer with what I eat earlier in the day than later. It gets more dangerous as the day goes on too. Last time I ate a large evening meal it put me in bed for two days. I have also observed that sugars are a problem, fruit especially, it's as if I am collecting fructose and sugar as the day goes on making me awful by the afternoon. My SIBO test was negative. Have you looked at SIBO ? Also something is happening in the night. I have read that mast cell activity is increased by the chemicals our bodies admit to aid sleep. I get really bad pains and cramps in my legs and huge adrenaline surges when I sometimes lie down. I have MCAS too. I had an MRI scan today on my small bowel for gastroparesis.
  6. I hear you on the reacting to everything you eat. I've had 5 weird heavy heavy fatigue unable to move attacks in 10 days, all food triggered. I am down to oatmeal too, and some white fish and salad. And small amounts or over the edge I go. Been looking for meal replacement drinks but there's so many triggers and gums in them I'm at a loss. Also unable to eat after 4/5 pm or the next day is a brain fog, light sensitive, in bed heavy fatigue right off. Pushing to see another GI specialist as can't get anyone to take me seriously.
  7. I'm back on 40mg of Loratadine and suddenly have a clarity of thought again. It's got to the point where I am so bad for days that the temptation to eat food that are high histamine and triggers just isn't so much a problem. I suffer too much it's not worth it. It's a shame it's happened the hard way but in a way it makes things easier.
  8. 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.
  9. 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.
  10. 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.
  11. 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 ?
  12. 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.
  13. 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.
  14. 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.
  15. 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.
  16. 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.
  17. 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.
  18. 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 ?
  19. 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.
  20. 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.
  21. 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
  22. 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.
  23. 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.
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