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Machair

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Posts posted by Machair

  1. 8 hours ago, bumpkin said:

    It's funny you mention mealtime posture, my own compensating has recently reached the extreme of taking to eating my meals while laying in bed propped up by a couple pillows, a strategy which has not been great for the ol' acid reflux, but feels like it keeps the cognitive symptoms from getting too much worse. 

    Carbs are a real challenge, I need them in order to feel alive again for five minutes, but seem to only tolerate them half decently earlier on in the day (but I'll settle for the air hunger over the racing heart), and really can't much handle any normal portion of them during late evening without experiencing the adrenaline surge.

    But I've thankfully made it a few weeks without the adrenaline surges now after experiencing them every week for a month, and I mostly credit that to having only smaller meals and eating more frequently, and keeping the carbs to a minimum (and balancing them with some kinda fat and protein if I do have 'em), and absolutely no pasta 💔 But I was practically eating like a diabetic for awhile there and felt so much worse for it, once I added some balanced carbs and sugar back in during the day, things got more manageable.

    If I start feeling that I've screwed up and waited too long to snack again, before the crash can hit I'll have a quick spoonful of fruit jelly (the natural kind made with a lil real sugar, not the high fructose corn syrup kind) to bump my sugar back up while hurriedly fixing some real food to munch on. Avoiding high fructose corn syrup is also helping..that stuffs been added to things you'd least expect. And having some kinda light snack before I go to sleep seems to help keep the 3AM nightsweats and 6AM adrenaline surge at bay, usually a stick of beef jerky or a small protein bar is enough to help. 

    I've also come to love regular organic chicken broth during the day, for some reason I'm finding that really puts some life back in me. Tried bone broth for awhile but oooh wee, was that stuff an acquired taste... the regular kind may not be super fancy nutrient-wise but it seems like it has plenty enough electrolytes to get the job done. 

    I've also been adding 1.5g salt to 16-20oz water to start drinking before meals to try to help get blood volume up, in the hopes of getting ahead of the gut rush after eating. But I know everyones salt needs and tolerance are different, and our appetites aren't always the best, drinking water and eating usually just means more acid reflux.. It's tough to strike a balance with this stuff.

     

    I am exactly the same. Carbs are very hard if I eat them late. They can cause adrenaline surges at night and prevent sleep. Thank you so much for reply and I hope you continue to stay well with your strategies!

  2. 15 hours ago, Water Lover said:

    Yes, I experience this sometimes. It's definitely related to meal size, and, much as I wish it weren't, does seem to be carb-related.

    But the factor that's bigger than size or carb content is time upright around the meal. I can deal with larger dinners at home with (usually) lesser symptoms because I've often been reclining before the meal, and once I'm done I can go lie on the couch. At home I also sometimes sit at the table in compensatory postures (legs tucked up under me, or on a bad day one leg tucked under me and one leg with my foot on the chair and my knee up above the table!). I've done that instinctively all my life—my parents tried to work on getting me to sit more normally when I was a kid. It was interesting to find out there's a reason I do it.

    Dinners out are harder because I've had to sit up driving to/from the restaurant, have to sit properly through the meal (can't get away with weird postures!), and the meal itself takes longer. Work dinners and things like that can get brutal—I become progressively less able to carry on conversation as I go because the pressure in my head is building up and my heart is pounding and I'm just trying to focus on keeping it together until I can leave!

    Lunch on days I work in the office (I am in a profession where partial WFH is possible, but I have to do several days in office each week) can be rough for similar reasons: I'm sitting up in a chair or standing for hours before lunch and hours after. That's where the small meals, low carb thing particularly seems to pay off some. It still gets worse, but not as much worse. (I've also started sometimes sitting on the floor around lunchtime—I'm in a space that's private enough that I can get away with that, although I get some odd looks sometimes!)

    So if you haven't, I totally recommend lying down after the meal (and perhaps a bit before, if possible). It may help! (I'll note that I am very sensitive to sitting upright in a chair, which I know not everyone is, so YMMV.)

    This is exactly the same for me. I am sure that it is the upright posture before during and after meals that is so hard. Breakfast rarely causes me issues as I have been reclining but lunch is challenging, especially if I have been upright all the time as I often am looking after my granddaughter. As for meals out they are so hard especially if they involve a drive and then talking in a hard back chair over a meal! Thank you so much for your reply it means the world.

  3. Has anyone else suffered with bloating and gurgling after eating especially midday meals? I am sure it isn't Coeliac as I tested for that, and I don't think it is lactose as I can eat that at other times and it is fine. I am wondering if it is related to prolonged sitting before the meal - for example today I was working on the computer for a couple of hours before lunch and a sandwich was enough to start off the bloating 30 minutes later and loud gurgles. I had wheat cereal for breakfast with no symptoms but I had been lying in bed beforehand. Has anyone noticed a correlation between upright posture and poor digestion especially wind bloating and gurgling? I was wondering if I have SIBO caused by slow digestive transit but it seems to be related to posture so not sure if I want to go down that testing route.

  4. Does anyone get rushes of adrenaline after eating? It doesn’t seem to be related to foods or carbs as it can happen anytime. I eat small meals now but still it can happen. I have noticed if I stand a lot preparing food that it is often likely to happen more after eating. I try not to stand and have taken to preparing meals in advance but sometimes when I have family around it is unavoidable. Anyone else? It is usually about 20 minutes after eating so I am guessing it is blood rushing to the gut. 

  5. Jyoti this is so helpful thank you. I think this is exactly the way I am and have been for 27 years. It has been such a struggle. I am thankful I can still do things but the payback is horrific in terms of the adrenaline if I exceed limits, and sleep is so vital if nothing else to escape from the horrid alternative of being awake 24 hours in a wired state.

    How are your mornings do you find them difficult? I find they can be difficult if my BP is low and this makes me anxious.

    I find even going out in the evening, which I rarely do but love to, is a risk for a very poor night afterwards. For example I went into London a couple of weeks ago for a concert and just missed the train so ended up on the last one. I felt ok till I sat down and a sudden panic attack started which was absolutely terrifying. I am sure the cause was being upright for far too many hours causing an adrenaline surge but even so it wasn't good. Luckily these don't happen often but they are all associated with too long upright. I get minor surges of adrenaline but the full blown panic attacks are much harder to cope with. These can also happen at night if I haven't had a restful evening and have even woken me up from sleep.

  6. I have a theory about this as I suffer from dreadful sleep issues and can be too wired to sleep and have horrid adrenaline surges. If I stand sit and lie down the difference in my BP is incredible. Standing is often 73/58, sitting 90/60 and lying 115/70. I have ME as well as dysautonomia. I think if I am upright for too many hours without getting flat, even for just 10 minutes, or let my fluid intake fall, the only way blood is getting round is by adrenaline. I think it is keeping me alive and has done for 27 years since diagnosis. However at bedtime this is all running through my system and causes surges and even panic attacks. If I do something really silly like have a hot bath before bed this will make things so much worse, I will literally be awake for hours in a wired state. I think the only success I have had is with very calm evenings and early nights, and nothing that triggers adrenaline so no talking on the phone or eating late meals and a host of other things that increase this likelihood which can be terrifying.  

  7. On 11/24/2023 at 11:58 PM, Scout said:

    Currently having a bad flare up with hyperPOTS.

    I can't be upright without feeling so ill and symptomatic.

    My pulse pressure is also very narrow (about 20), and salt and fluids isn't doing much.

    I think I'm posting on here as I just need some positivity and support.

    Hope you all have a nice day 💕

    I just wanted to say I hope you are feeling better. Low pulse pressure is awful I get this too 89/70 in flares xx

  8. Does anyone else find being upright generates horrid panic feelings and if prolonged causes bowel upsets? I find in flares that standing causes my bowel to churn and often requires several toilet trips if it is a bad day along with all the other usual symptoms of dysautonomia. It is horrid as I have to be aware of the location of bathrooms. 

  9. Does anyone else find that some days are so much better than others? I can do the same things on two consecutive days and one day will be reasonable and the next impossible or very difficult. It is impossible to predict which will happen. 
     Recently for example I went away to somewhere warm. One day I was able to walk in the sun  for a short time and sit in the shade comfortably,  but another day the same activity caused panic feelings sweating irritable bowel dizziness palpitations etc only relieved by dipping my feet into a cold fountain that helped somewhat. 
    Anyone else see this difference from one day to another? 

  10. Has anyone noticed that if they sit outside in the hot  sun for any length of time it causes GI symptoms? I rarely sit in the sun as I know it is bad for dysautonomia, but if I do sometimes it invariably causes panic and bowel urgency which is loose and not the normal constipation. I have a theory that it is caused by the blood rushing to the skin to cool the body leaving nothing left for the gut. It is especially worse if I eat in the sun too. Anyone else have this? 
     

  11. Does anyone else wake up in the late part of the night around 4 or 5 am with adrenaline surges that wake them up from sleep? Heart pounding sweating panic etc. I have had this during the entirety of being ill with dysautonomia and it is really horrible. I don't have blood sugar issues or diabetes, and I have fluids and electrolytes before bed so I think I have covered that. I am recently post menopausal in the last 4 years and I know a lot of my friends who don't have dysautonomia say they often wake up like this, so is it hormonal or not?- but I had it since diagnosis almost 3 decades ago when I was not lacking in oestrogen.

    Anyone else get this?

  12. Thank you so much for your replies. I feel so sorry for you erinlia- I think you must have small children which is super hard. I was very lucky as I got ill 27 years ago when my 4 children were all at school. I am now looking after my granddaughter so there is a lot more responsibility and I am trying to find ways of managing the mornings. Extra salt tablets (Vitassium) seem to help a little as they are helping to push my morning blood pressure to 100/60 rather than 80/60 which is far too low. I am trying to get up slowly and allow things to normalise before leaving the house as it otherwise causes enormous adrenaline rushes which are so unpleasant.

    Wishing all of you who replied all my very best wishes.xxx

  13. Morning are becoming very difficult as I have new family responsibilities that mean there isn't as much time as there was to get up slowly. I am finding that by 10am I am very panic stricken and symptomatic and it causes more bathroom trips palpitations and general feelings of panic. How do you manage mornings and do others find rushing the getting up process triggers worsening symptoms? Thank you so much.

  14. I am exactly the same and I have always thought this to be dehydration in the morning as I am more symptomatic then, but meals will also bring on symptoms even in the evening. As a general rule though morning are far worse and always have been. I have had dysautonomia for 27 years now ( Coxsachie Virus) and the symptom pattern remains worse in the morning better in the evening, but I can wake up far too early symptomatic at 4am drenched in sweat in a panic which will improve with a 16oz glass of water in 20 minutes so blood volume I am sure is too low as the night wears on. My morning blood pressure is usually low, especially the pulse pressure standing, eg 90/75 and the heart rate is too high. By the evening this is normally a bit better but not always. I wish I knew the cause and the cure as lifestyle measures are the way to improve things but they don't always work!

  15. Has anyone noticed their symptoms get worse towards the end of winter? I read somewhere that some patients need to increase their meds in times of bad weather as they are more symptomatic. I certainly get a lot worse with dysautonomia after a long period of winter even though I take vitamin D and have optimum levels. Heat is of course a trigger ,but sunlight and gentle warmth seem to improve symptoms a bit whereas long winters makes thing a lot worse. Anyone else have an insight into this or has found they too suffer more? I am in the UK where we really do have 4 seasons! Lately I have pronounced symptoms on lying down at night again as well as dreadful mornings with low BP and high heart rate - plus heaps of anxiety brought on by palpitations and all the usual symptoms.

  16. Thank you so much for your replies.

    I think it is something many of us have and as you say Pistol it is mostly gastroparesis. I think that is easier to deal with than the opposite times of high adrenaline which makes being out of the house tricky. Not knowing when it is going to be one or the other is also very difficult to predict, but one thing I have noticed which might help someone is that when I have the diarrhoea or loose bowel situation my pulse pressure standing in the morning is low and my heart rate is high, in fact sometimes it can't read it standing so I think adrenaline is being pushed out to keep the blood moving up to the brain. Historically I will see 90/75 standing on a bad day or 85/70 with a very high pulse which is well documented in folk with ME/CFS which I also have. On those days I try to increase fluids salt and electrolytes.I agree about the meals and avoiding large dinners and carbs as this makes thing so much worse.

  17. When my POTS is flaring in the morning, especially if I have to stand for any length of time, anxiety type feelings are massive, adrenaline surges and with them comes the dreaded IBS type symptoms ie the need to have loose bowels/ diarrhoea. This is worse in hot weather.  Now normally constipation is the situation, but when the pots is flaring on standing it swings the other way which is very inconvenient and embarrassing. I have tried all sorts of elimination diets and there is no improvement, and it is definitely related to all the other symptoms that occur at the same time and is triggered by standing. Has anyone else experienced this and do you have any tips to manage it? I have had these symptoms for over 25 years so it isn't a recent thing, but other than taking Immodium if I know it could happen and I have to be somewhere in the morning I have run out of ideas! What GI symptoms do you have and is diarrhoea one of them? Thank you to you all for helping.x

  18. What do you all eat for dinner and what sort of time? I ask as I have noticed that in order to have any kind of restful sleep I have to limit food intake after 5pm. My gut is very slow and if I eat late at night it causes a very poor sleep with worse OI in the morning. Being vegetarian my diet is often full of fruit and veg which I find hard to digest in a pots flare especially if eaten late.

  19. Thank you so much for this it is incredibly helpful. I think I am going to quit the 3 meals and try your regime because I am so symptomatic after meals generally. I think it is the thing I have never tried and also there is certainly an increase in symptoms after meals containing 2 courses.

    I might look at HRT but I have had two ops for fibroids and polyps so with the recent stress of those in the last few months I am reluctant to add oestrogen.I had late menopause at 59 too so was lucky there.Two GA for 2 procedures wasn't fun and it wasn't good for POTS either!

    I hope you are doing well yourself and thank you for all your help.xx

  20. Thank you so much Pistol for your very helpful reply which is appreciated so much.

    Yes menopause may be the issue, I only recently went through this so I think it could partly be the culprit.

    Do you avoid any foods or drinks that make it worse? Do you have any advice for eating during the day?

    I had been thinking about getting a weighted blanket so will do so now.

    I agree about the daily routine affecting sleep- I am sure it is the build up of adrenaline. I know because when I go on air travel or long car journeys this triggers bad nights. Usually though I recognise them and try to do the right thing.

     

  21. After a good few years of being relatively stable I have been getting worse recently, and last night it all came to a head with a 4 am panic attack that woke me up from sleep. Anyone else have these? I normally wake up hot most days with a headache and it gradually goes with a large glass of fluid and then intensive morning hydration, but today it was a full blown panic state that I haven't had for a few years. I think it is my fault as I have been paying less attention to the illness and had 3 late nights last week.

    I am wondering if I should be sleeping flat as I know this also causes fluid loss in the night? Any experiences with 4am panic and do you sleep flat or raised?

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