Machair

Hi Janey Yes I have exactly this as you described and at my worst I too had diarrhoea during these night time episodes,often in the early hours of the morning. I have improved since then, but still have this happening in the day sometimes, and it is horrid. I would be very interested what your doctor says about these events as they worry me too.

Sometimes at night I feel as if I have to stay awake almost to control my breathing which borders on hyperventilation at times. It feels like I am literally soaking in adrenaline and can't relax. Does anyone else feel like this? I wonder if it is due to all the adrenaline produced to keep the blood flow going during the day when upright that is left in the body at night. Sometimes it also causes vivid nightmares when I finally drop off where I am rushing for things and missing them, like appointments or plane departures.

Does anyone find that if they get up too quickly during the night to visit the bathroom that they feel very dizzy and unstable? I had this last night and had to grab hold of the wall.

I get this exactly as you described and my blood pressure is also low as yours was at the time. I am unsure whether it is vertigo or pots, but am inclined to go with pots as it isn't usual to have low BP with vertigo. Whatever the cause it is frightening and I get this from time to time, mostly at night or if I get up too quickly in the morning when my blood pressure is at its lowest before I have drunk anything.

Yes I too have very low blood pressure after lying in bed all night and it is similar to yours. I think it is why I find getting up do hard in the morning and why I am often dizzy even lying in bed sometimes. I also Have ME and I think this is why I have the low blood pressure. My pulse rises with standing though dramatically.

I was reading recently in an online article that many patients experience spells of supine or standing vertigo with pots. I think it depends on how severe it is and if you have low blood pressure at night and maybe are dehydrated. I certainly get symptoms lying down but these are much less common that standing, and it is the standing which sees the dramatic rise in pulse rates. My symptoms when lying down seem to be related to times when I have spent a lot of time standing during the day and so the problems are so much worse anyway. Hope this helps.

Last weekend I made the mistake of doing too much and forgot to keep my fluid levels up. Added to that I also rather stupidly stood in several queues which I try to avoid, and these were lengthy. I also had a lot of stress as well as a dear friend passed away last week. So I woke up in the night drenched in sweat with the room spinning and feeling like I was having a full blown panic attack with palpitations. BP was ok though I was hyperventilating which I do when I get exhausted. Hubby got me a large glass of water followed by Gatorade and then symptoms slowly abated, though the vertigo continued until the morning. This left me wiped out for a couple of days but as I have got my fluid up I have much improved, though my mornng BP is still very low at 90/54 and pulse shoots up dramatically on standing. These events are not new to me but occur when I stop following the POTs rules! Does anyone else have these dreadful adrenaline rushes and does anyone have the room spinning when they happen? I am so sure that stress, coupled with standing in one spot for too long, and not drinking enough sets off this dreadful chain of events, but I just wondered if I am alone or if anyone else can identify with this.

Having just returned from holiday I had two bouts of diarrhoea which occured suddenly after meals. I had been sitting in the shade prior to lunch, though the temperature was 31, and it was after eating that I suddenly felt panic stricken and urgent diarrhoea followed. I have noticed this before on holiday as any form of heat seems to make my gut highly sensitive. My last holiday was much worse than this and it happened all the time.The only way I seemed to have coped is to eat tiny meals and not to sit with the family afterwards in upright chairs. Does anyone else find that heat makes their gut highly problematic?- and any ideas how to stop this as it is horrid and makes me nervous, and of course you can't rely on it to perform normally. I think it may have something to do with adrenaline and digestion, and of course the intense heat of a hot holiday destination. Any help would be really appreciated.

I have had severe symptoms after flying and am going long haul tomorrow. This forum has helped me so much and I hope what I say helps too. I suffer more the day after than on the flight, although I do get some palps at altitude. However the next day I usually have a full blown crash and try to keep hydrated and take as much electrolyte as I can. That said it can be a rough ride and it takes several days to even get stable. Big meals are a no no as my stomach rejects them and it bloats and causes problems. Hot sun is also a killer especially if humid. The palpitations are dreadful and sometimes I can't stop them for days. I am hoping to get on top of this problem as I want to go to Tucson to visit my son next year which will be the longest I have flown long haul to date.

Thank you so much for posting this, it is really helpful and I have never seen anything like this before when researching the condition.

Hi Karakal Any ideas how to help this? Mine seems to be severe after meals-running to the bathroom and also in the morning, but mostly if I have gone without sleep or overdone it. The worst thing is it is urgent and I hate the lack of warning I get. Is this your experience?

I can't tell you how much I appreciate this forum being here. I was just about to post the same question as I too have bouts of this especially when I overdo things. Most common time is early morning especially if I shower before eating but also after meals. Actually I can't shower any more but have to bath as just standing in a hot shower makes me so ill.

Hi Gary Well I agree with you totally about the variability of the symptoms from one day to another. Sometimes I am ok for days and then for no apparent reason the problems start again. I have also noticed them in bed at night as well as when I stand up, especially last thing, and I can't queue for anything as standng on one spot is impossible. I was tested for Lyme but it was negative so the enterovirus seems to be the cause with me. I am always ill in certain situations though and long haul air travel is one of them, especially if the destination is hot and humid. My son now lives in Arizona which is a 12 hour flight from the UK, has anyone any advice how to cope with this?- as I would dearly like to see him soon. Have you been treated with antibiotics for the Lyme and did it help?- as I understand you have to treat it early to be 100% successful.

I have all the symptoms you mention in your episode list and the triggers you talk about are mine too. I have pots as a symptom of ME/CFS which I got in 1996 after contracting an enterovirus related to Polio. I can't tolerate heat, it sends my heart crazy, and as you say the bathroom trips are a major problem. Periods are a trigger as well and sugar is too, but the worst one is alcohol - a glass of wine would have me up all night with these attacks. You are not alone.