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    4 children - 31-39 years. One gorgeous little baby granddaughter. One son lives in Hawaii, one daughter in Wales, one daughter in Scotland and one son in England
    Love remote places, Shih Tzu dogs and Persian cats. Summer days, spending time with my husband and family.

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  1. 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. 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. I just wanted to send you all the love in the world and to say I hope you are feeling better. You have helped me more than words can say and my heart goes out to you xxx
  8. 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
  9. Thank you so much for the replies. Pistol I really understand what you are saying it is horrid though isn’t it? Have you found anything that helps to prevent attacks?
  10. 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.
  11. 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?
  12. 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?
  13. 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?
  14. Could you describe your gut symptoms and how you treat them? I have small meals low carb and no food in the evening after 6pm. I still have bloating IBS type symptoms that swing from one extreme to the other and a general feeling of gut dysfunction. Peppermint oil tablets help as does avoiding fodmaps. Nothing eliminates it completely though - anyone else in this boat?
  15. 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
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