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misseb

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Posts posted by misseb


  1. 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. 


  2. 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. 

    🥶🥵 🥶🥵 🥶🥵 🥶🥵

     


  3. 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'

     


  4. 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 

     


  5. 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. 


  6. 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 

     

     

     

     


  7. 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. 

     


  8. 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. 


  9. 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. 


  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. 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. 


  13. 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.


  14. 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. 


  15. 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 ? 

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