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Everything posted by misseb

  1. Very late to the party but really interested to read this. I am even eating lying down now as it stops the huge crashes after food that result in me being in a semi unconscious state for hours after. When I say eating: a carb free half a cup full and that's it. Wait a couple of hours have the other half.
  2. Hey lovely people BP this morning on sitting was 88/58 and my pulse raises by 32 on standing but BP barely changes. It's always been low but not normally as low as this. I don't know if it's a lockdown sedentary thing but I've been really struggling the past two months with huge crashes after I eat - can't move for 4 hours and go into a practically passed out sleep - then I pop out of it fatigued but very strung out. I'm now eating a few forks of food then leaving it a while, and recently am lying while eating and making sure I don't attempt food if I've been on my feet or sitting for a while. Lie and rest first. Am grain and carb free or else it's impossible - and I get heavy fatigue the next day too. Does anyone else find that lying down with your legs raised before eating - nibbling to be more realistic - helps? Wondering if there are any other tips at all ? It can all go wrong so quickly. I am drinking litres of water a day. Salt is 10g a day. I'm speaking to my POTS specialist in two weeks and I want to talk about meds to help me too. What's a good option have you found best? I have MCAS too and am on antihistamines and sod crom. Thank you Emma
  3. The list is endless and often no two days are the same. These are the main glamorous ones. After taking sodium cromoglicate four times daily and antihistamines. Breathlessness. Panic. Dizziness. Surreal sense of confusion. Tight throat. Blurred vision. Edema - normally in right calf. Flushing. Itching. Burning sensation in body as if you're on fire. Tremors. Adrenal rushes in body. Tinnitus. Hives. Rosacea. Thrush. Hungover feeling without alcohol. Feeling of having not slept even though you have. Insomnia. Racing heart. Severe brain fog. Fatigue. Nausea. Vomiting. Diarrhoea. Weakness. Light sensitivity. Sore tongue. Severe cramps and pains in legs. on lying down. Stomach ache. There's a longer list here on the healing histamine blog - https://healinghistamine.com/histamine-intolerance-symptoms/ My symptoms are much worse on waking up or towards the end of the day. I can tolerate some foods before 2pm after 2pm is more dangerous. This is a common time frame with MCAS.
  4. I have MCAS and have to be very careful around perfumes, beauty products, cleaning products, paints etc or I flare and become very faint. This whole hand gel bleach product C-19 thing has been tough as everyone is blasting these products everywhere.
  5. It definitely helps me. As does Diet coke and chocolate - but only if it's low in cocoa content or I mast cell flare. If my blood pressure these help get it back up. Breaks all the POTS rules but I can't get by without them. If I go a day without them I crash after food straightaway. I'm sure this is not healthy but it's keeping me on the bouncy crazy tight rope.
  6. 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 !!!
  7. 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.
  8. 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.
  9. Thank's so much for taking the time to answer. I will look into it.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. 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.
  16. 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.
  17. 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.
  18. 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.
  19. 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 ?
  20. 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.
  21. 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.
  22. 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.
  23. 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.
  24. 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.
  25. 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.
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