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Everything posted by misseb

  1. Just stumbled across this. I'm only ever able to eat such a small amount of food to keep my BP up that I struggle to keep weight on. I feel so much better when I dont eat that it's hard to get myself to. I'm a boney US size 6.
  2. Great talk - Watch under recording to view. A lot of the slides are scientific and baffling but his argument around salt is interesting. I’ve never really felt the benefits from salt - fluids yes, but salt no. It might explain https://dysautonomiainternational.salsalabs.org/dysintlbloodvolumewebinar_newlink?wvpId=f076ccdb-3f04-41a0-85e2-d51486eff391
  3. I think if we let go of perceptions of how we are meant to eat it also really helps. So what if we don't have meals. It's what works for us that matters.
  4. It's a small price to pay when my alternative is being incapacitated in bed. I have much more energy and focus when I am snacking. It's made life possible again. Big meals really dont work and we adapt to what we give our bodies . Hope you find a magical path
  5. You could try playing with quantities and timing too. I have given up on breakfast as it's too hazardous. I have a few nuts or a few segments of orange after a few hours of being awake and drip feed myself all day until around 3pm when my blood pressure is up and I can eat more. Nuts are my friend in the morning despite my MCAS I have managed to reintro them. Seeds give me fatigue. I also focus on liquid foods - miso, cacao hot chocolate - the cacao raises my adrenaline which for once helps, weak coffee with cashew cream, veggie juices - not fruit as I have fructose malabsorption probs. Anything to help get calories in and not send blood to the stomach to digest. I will often lie down at 11am for 20 mins to get blood from my legs to help the day along. I am terrible with anything grainy, high fructose - bananas + dates, avocados, eggs, HIGH FODMAP, dairy, pulses. It's a daily tightrope walk especially when I am trying to work and sitting sedentary. I have to be so so careful.
  6. This is interesting as I was just looking here for migraines. When I have "overdone it" food wise, am stressed or simply try to do too much I have a 24 - 48 hour attack and get slurred speech, am very unstable on my feet, have very slow response times, drop things and am very light sensitive - but all without a headache. All POTS specialists I have mentioned this to say these are not POTS symptoms. I wonder about the autonomic link and migraines symptoms. Typing this with one eye closed feel exactly as above. YAY.
  7. Oh love. I hear you on the panic. It feels like a constant battle to keep anything functioning. A foot wrong and it all comes tumbling down - if it wasn't already down there, smile. And the deconditioning happens so quickly, for me it's even a few days. I live in constant fear that "this is it" and that I will remain like this forever or get worse. But we will get better, bit by bit. We have done it before and can do it again. Hang on in there. You're in my thoughts. I know how hard it is, and thank you for giving me support.
  8. I know when I'm about to have an attack as I start to feel very cold, often after eating and standing, it's as if the life is draining out of me. My vision blurs, I can't think and then feel very cold. Often my temperature drops to 34 degrees Celsius and I'm shivering. Interesting to understand why. Thank you Pistol. 🥶🥵 🥶🥵 🥶🥵 🥶🥵
  9. Urfffff. I've been really struggling the past few weeks. My resting BP is 80/40 at times and my pulse between 50 - 62. I feel so weak and tired. I have to keep on moving to raise my pulse or I sink into a faint weak state. My last 24 hour BP reading 3 months ago led to a diagnosis of inappropriate sinus tachycardia as all readings other than while asleep were over 100, but that seems impossible now as my pulse is low. Anyone else have these extreme swings ? I felt so much better then than now. If I move about it raises my pulse - but not my BP - and I feel a bit better for say 30 mins then I have to keep on moving again. I can't get to see my cardiologist due to C-19. Any tips to help this problem ? I am not on meds, only on high water intake, salt, and snack sized 'meals'
  10. The mornings can be a beast. I drink a litre of salted water before even getting out of bed and give myself 30 mins to wake up and move my arms and do calf pumps before getting out of bed. I also have to be very very careful what I eat after 4pm. It's as if I have a BP crash hangover if I eat even the smallest of meals late, and grains and carbs are an enormous no no. 'Dinner' will literally be a few nuts. If I eat too late I can sleep for up to 12 hours almost passed out, and am then a fatigued wonky stumbling mess the next day - which really is a bed ridden write off. Maybe worth looking at your evening meal and seeing if changes can be made to it etc. Please just ask this forum things when you are struggling. It can be so scary and isolating. But you are not alone. x
  11. 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.
  12. 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
  13. 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.
  14. 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.
  15. 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.
  16. 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 !!!
  17. 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.
  18. 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.
  19. Thank's so much for taking the time to answer. I will look into it.
  20. 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.
  21. 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.
  22. 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.
  23. 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.
  24. 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.
  25. 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.
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