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About misseb

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  1. Gawd. Yes. Like Im on a boat. Sometimes I'm stumbling around too. Yesterday I had a panic as I thought my car was rolling forward while parked but it was me still moving in the previous flow of traffic !!!
  2. Yes. I frequently get an ocean sound in one ear. And when I am reacting to food (I have MCAD) I actually get itchy inner ears and a high pitched loud ringing in both.
  3. Hey Jim, just reaching out as I remember we had very similar eating profiles and struggles - getting more fatigued by food as the day went on and pretty much only eating oats. Fine eating breakfast but then crash as soon as I used to eat anything substantial again. Finally I've found the main trigger for my fatigue - grains and especially oats - the thing that I thought was my number one friend. I have been able to put fruit, vegetables, fish and almonds back in since I removed oats and all other grains three weeks ago. Feel the best I've felt for a few years. Going out in the evenings and everything now, where before I couldn't get past 8pm without sleeping. I was just hanging on to oats fearfully as it felt like I couldn't eat anything else. What put me on to it was the SIBO pre test diet where I ate only 'safe' plain white rice and was so fatigued I couldn't stand up, and then I went on a trip to Beirut where I didn't have oats. My SIBO test is positive, maybe it's part of the cause. Sharing in case this is of help.
  4. Thank's so much for taking the time to answer. I will look into it.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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 ?
  15. 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.
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