Machair

I can honestly say that yes mornings are a complete nightmare and I also agree with misseb about evening meals. I have come to the conclusion that eating after 5pm is pointless as it leads to a very poor night and worse morning symptoms. I think the stomach needs to be completely empty or it competes with other systems for blood. Imagine eating a massive dinner- you feel dreadful right? but even some smaller meals eaten too late or eaten at stressful times can be very difficult. I know this as I will forget and eat dinner and dessert and then wonder why I can't sleep and then wake up worse. It doesn't stop the issue though as after a long night of sleep I am like a Zombie and it is dreadful. Heat makes everything worse and we have a heatwave here in the UK just now. Anyone got any tips about the best sleeping position? - I heard lying flat is not recommended as it worsens symptoms in the morning.

Does anyone ever get a low grade fever during what seems like a pots attack? I haven't had this very often maybe 3 or 4 times in 10 years but very very occasionally I have had an episode when I have gone to bed and will be woken up with shivering and sweating - a temp of 37 (98.6). Next I will have a fast heart beat and what feels like a panic attack. Stomach cramps and excessive urination will follow and eventually I fall asleep, and although wiped out the next day the event will be over. I just wonder if it is like a build up of adrenaline as it happens after prolonged standing or sitting the previous day or maybe not hydrated enough?. Do you get actual pots attacks and do they resemble this? Luckily my autonomic dysfunction is mild and controlled, but overdoing things can lead to this scenario and often happens out of the blue. It feels like flu but it isn't as it lasts only for a few hours and is luckily very infrequent

Has anyone noticed that they pass very concentrated urine in the morning and have you found ways to really help this as I think it is making me worse. The urine is quite dark and sometimes looks a bit foamy or bubbly. It clears after I get up and start drinking, and becomes clear afterwards all day as I drink a lot, so I think it is due to excessive overnight dehydration. Do you drink through the night or not and does this help if you do? Mornings are so hard with the low blood pressure and getting going is not an easy task. I am torn between drinking during the night and risking even more interrupted sleep from bathroom trips!

Thank you all for your comments they are appreciated so much 😁 Does anyone wake up feeling well or normal any more?

Has anyone been advised by their doctors on the number of pillows to sleep on at night in order to wake up with the most blood volume in the morning to lessen symptoms. I tend to sleep on one pillow and as I sleep on my tummy it is quite a flat pillow. Towards the morning things get difficult as I will wake up sweating around 4-5am, which I presume is due to the low blood volume causing the body to release adrenaline to keep blood moving. Also nights when I sleep well are worse as I am much more orthostatic on rising than when I am up and down all night restless. Does anyone else find this?

That is interesting - have you personal experience of this and have you treated it? I have CFS which by definition causes low cortisol so this may be important.

Can anyone describe the horror of the first couple of hours each morning, as I am really struggling and it seems like it is taking me all day to get stable. Are you all in this boat? Mornings seem to be dreadful - it is sheer willpower getting me out of bed and I am waking up boiling hot again at dawn. Had my thyroid checked that is ok though T3 on the borderline of low. Vitamin D was low so that is being treated- everything else ok. Is it the time of year as we have very very low pressure here in the UK and I have noticed I seem to be worse at this time of year generally- end of the winter. Anyone else find mornings dreadful and also low pressure weather?

Does anyone else find lying flat at night makes them so much worse. I have always enjoyed one thin pillow, but it makes me wake up in the night sweating, and if I don't get another pillow to lift my head by the morning I can be dripping in sweat and sometimes it gives me muffled ears. I know the symptoms are so much worse when upright, but they are not necessarily ameliorated by lying down either at least not flat. Has anyone been given advice on this issue by the medics and a reason why lying flat isn't a good idea overnight?

Anyone wake up deaf in one ear and sinusy which clears through the morning? Think this could be a symptom as it seems to happen if I sleep lying flat. I wondered about allergies but I think it might be due to blood flow issues. I have tried several pillows but I find I have thrown them off by the morning.

If I sleep I wake up with a massive headache and often in a pool of sweat, if I can't sleep then I am just full of adrenaline and will toss and turn all night. At least with the headache and the sweating I have some rest but it is like waking up with the flu. Anyone else have this?

Yes I have this and it is dreadful. I actually dread being in company when this happens as it is not nice at all. I think it is one of the worst symptoms for me, as it is often so difficult to manage if you are out of the house, or in situations where there is no toilet. How do you all cope with that?

Congratulations to you on the arrival of your new dear little baby.x

I have been flaring very badly recently, and have noticed that my diastolic blood pressure rises a lot and has on occasions reached 90 with the systolic being more unstable- sometimes as low as 111 making a low pulse pressure on standing. Do you see the diastolic rising on standing and by how much? I have noticed this happens when my pulse shoots up a lot- it is like the diastolic is rising to push the blood round. Anyone else? Normally I have lowish BP but in flares it can reach pre-hypertensive levels diastolically speaking.

How many people experience dizzy spells and palpitations for a few minutes after they go to bed to sleep at night? I have this on days when I have been upright too long - it is literally within a few moments of reclining. I know this is an illness related to difficulty remaining upright, but for me anyway an additional symptom seems to be there when going from standing to lying down for the night. Has anyone been given an explanation for this?

I also get dizzy when lying down at first for a few minutes if I am in a flare. It seems to be related to days when my pulse pressure is low say 90/75 standing. Flying also does this to me the night after. I suspect low blood volume. It is my experience that although the illness is about difficulty remaining upright, I am not symptom free lying down, and sometimes the first few minutes changing position can be frightening, especially when lying down to go to sleep at night when I can be very dizzy at first. Anyone else have this?

Has anyone noticed that during a flare they get cloudy urine with lots of sediment? I seem to get this especially in hot weather and often during the night I notice it when I get up due to POTS making me restless. I wonder if it is dehydration as it clears after I drink. Anyone have this?

Thank you so much for that Jackie - it is appreciated so much

Heat is a major relapse trigger for me, and one of the things I have struggled with for 17 years is that sitting upright, especially in hot places, causes rushes of adrenaline, palpitations, and sadly an urge to visit the bathroom, as it causes loose bowels, or worse still diarrhea. I also get it in shops if I am standing looking at things so I know it is orthostatic intolerance. The problem is that if I get well enough to go out with friends for a meal, which I can do very infrequently, this issue is very difficult to cope with as no one want to eat a meal with a person who is running back and forth to the toilet. I know it is orthostatic, because if I eat the same meal in a cool place, without having to also make conversation, it doesn't happen. Has anyone experienced this and do you have any ideas to cope with it? I have tried taking anti diarrhea meds before going out and this does help- then I only get the palpitations and know it won't affect the gut which gives me peace of mind, especially if I am going to be a wedding for example. Heat makes the issue so much worse. Anyone else got this and has any medication helped with this?

Thank you so much Volo- I will try this. What happened before to you if you ate meals as normal- were your symptoms similar to mine?

I have a lot of problems with digestion when my dysautonomia is at its worst. Bloating and a feeling as if food is very slow to move through the gut. This often makes my breathing worse during the night as pressure from my stomach seems to make things more difficult. I'll often wake up with a hyperventilation episode. The other night I had a very light tea- just a plain omelette and ate really early- before 6pm and I slept so much better. This has made me think that in order to sleep more soundly I will have to really eat less at night, and eat much more bland foods with less roughage.This is difficult as I am a wholefood loving vegetarian, but I am not sure that beans pulses and green vegetables agree with my digestive system and make me more ill. I also have CFS/ME so digestive issues are a constant battle. What do you all eat in the evening and do you find meals really affect sleep? Do you have tiny portions? I almost wonder about cutting out dinner altogether. Any opinions would be really welcome- thank you to you all.

Does anyone wake up hyperventilating at night? On my worse nights I don't sleep because of the disordered breathing pattern I have when I am in bed, and so I only sleep very lightly and wake up frequently as if to take over my breathing consciously. On the nights when I do sleep I wake up sweating during the night but at least it is more restful. Does anyone have these symptoms? I wonder if it is because I sleep on only one pillow as I find more rather uncomfortable is this likely? Thank you all so much.x

In bad patches when I wake up I am drenched in sweat- usually around 4-6am. I often feel full of adrenaline then and try to keep calm until it settles. When severe it will persist and then I may have a urgent trip to the bathroom (loose bowels). Sometimes dizzy too but not every time. Luckily this isn't every day but it is when I am very potsy, and generally follows a day when I have tried to do something challenging. Shopping and standing in queues will also make me feel adrenaline filled and often requires toilet trips too. Can anyone identify with this and any ideas how to stop it.

I just got back from holiday and all was ok until the return flight which was 11 hours. I haven't flown long haul much since being ill, but this time I tried to do everything right, but suddenly as lunch was being served I started to experience the really high heart rate and knew an attack was imminent. The problem was I was flying from a hot humid country back to the UK and was probably less hydrated than I should have been but the main problem was the severe panic I felt as the attack also affected my gut. During the holiday digestion was very difficult and slow due to the heat- it felt as if food was just going nowhere so I ate very light meals. However with the dreadful panic and anxiety it made things swing to the other extreme and I was in and out of the aeroplane toilet. It wasn't diarrhoea but I felt as if it could become so, and so I took Immodium to make sure that it didn't become an issue which in extreme cases I have suffered in a POTs attack. The palpitations went on for 20 minutes or so and I was pretty sick and wondered how I was going to cope for another 6 hours. I think eating lunch set off the attack as all the blood must have rushed to the gut triggering the symptoms. Has anyone else experienced this during a flight and have you any ideas how to prevent it?

I am in a relapse at the moment and was wondering if any of you have adrenaline rushes when you wake up in the morning. I will often feel like I am in a panic and am sometimes also dizzy even before I have tried to get up. It is always when I am feeling at my worst, and it settles with calm breathing and fluids and a very gradual return to being upright. I am wondering if the one pillow I sleep on is enough and if I am lying too flat for too long. Anyone else have this horrid symptom?

I have a problem with urgent diarrhoea and for me it usually occurs after a meal if I am sitting upright and eat too much in one sitting. I think this is why it becomes a more severe issue when I am out somewhere with family or friends as at home I eat tiny portions. Of course when you are out is exactly what you don't want as it scares me so much. Last weekend I only just made it to the toilets in a restaurant, and I had eaten a large carbohydrate meal with a fizzy drink which was fatal. I also wasn't adequately hydrated as I had travelled in a car for four hours first. I have at times been too late which is a nightmare and always on days when my pulse pressure was too low - 80/65 standing. It is a recurring problem and one that few of us want to talk about as it is really horrid.