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misseb

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  1. 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
  2. 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.
  3. 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
  4. 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. An
  5. 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.
  6. 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.
  7. 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. 🥶🥵 🥶🥵 🥶🥵 🥶🥵
  8. 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 th
  9. 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
  10. 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.
  11. 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 f
  12. 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. L
  13. 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.
  14. 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.
  15. 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 !!!
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