Machair

I have two sorts of nights and I was wondering if anyone else has these. On a really bad POTS night I can't seem to regulate my breathing pattern and I hyperventilate all night, have restless legs and hardly sleep, but I feel full of adrenaline and worn out in the morning. On a better night, when I do sleep, I will wake up with night sweats or all clammy, and sometimes if I sleep all night, which is rare, the mornings are very difficult as I almost have a panic attack on waking where my heart races, and sometimes I have to run too the bathroom, like I am a wash with adrenaline. Anyone see this pattern - either way I dread the nights almost as much as the days, but the mornings are the worst however I sleep.

I was wondering how many of you have dizzy spells as a result of the illness and when these occur and how they feel. I have two sorts- one is vertigo where the room spins violently, but this is less frequent than the other kind I get which occurs when I change position from lying to standing, or even from standing to lying. The second kind is more like head pressure at the back of the head and is often accompanied by sweating or palpitations.Do any of these sound familiar?

I have CFS/ME and NMH and POTS so yes I am one of the 90% who have dysautonomia. The documentary is brilliant and I think you will find it very comforting.

I was wondering if anyone has flares during their period. I get really bad on the worst two days which are generally days 2 and 3 of the bleeding. Being almost 51 I keep thinking I must be in menopause soon, but so far it appears not. Last night (day2) was horrific. I went to bed and had dizziness most of the night and a crashing headache, palps and tachy -the lot. I think I let myself get dehydrated yesterday which didn't help.Anyone else have this, and if you are about my age any idea when I could expect this to all end?

I was wondering if any of you experience dizzyness when you first lie down at night to go to sleep. It doesn't always happen but sometimes when I put my head on the pillow I will feel these dizzy sensations -sometimes with palpitations. Occasionally the room looks as if it is moving a little as well.Most of my symptoms occur when moving from lying to sitting or standing, but changing any posture including lying down (though to a lesser extent) seems to affect the POTS.It makes me feel dreadful. Has anyone else had palpitations or dizziness when they first lie down at night?

I was wondering if any of you experience dizzyness when you first lie down at night to go to sleep. It doesn't always happen but sometimes when I put my head on the pillow I will feel these dizzy sensations -sometimes with palpitations. Occasionally the room looks as if it is moving a little as well.Most of my symptoms occur when moving from lying to sitting or standing, but changing any posture including lying down (though to a lesser extent) seems to affect the POTS.It makes me feel dreadful. Has anyone else had palpitations or dizziness when they first lie down at night?

This is exactly what has been happening to me lately. I will sleep quite well until 4 and then I wake up suddenly with palpitations/sweating and generally feeling very adrenaline filled.I have to really try to calm down and get back to sleep, or I lose 3 hours of the night and the day is a trial then.I am trying a high protein diet with a protein shake just before bed to see if that helps.

I have recently noticed that if I lie on one pillow at night that I will often feel so much worse in the morning, and will sometimes wake up very symptomatic at 4 or 5am. This can be sweating, heart racing etc. Sleeping more propped up seems to help, but I hate this position as I am so used to lying flat. How do you all sleep and does lying flat at night make symptoms worse by the morning? Has anyone had their cardiologist tell them to sleep propped up and avoid the supine position?

I am very much like yourself in that I have slow digestion. However, every now and then the reverse occurs. This is especially the case in hot and humid weather.It can also affect me during what feels like adrenaline surges, and is also common during my period.I am very nervous about it as it can be unpredictable, but luckily it is much less common than my main problem which is slow digestive transit.A large meal with a lot of fibre can also cause this in me so I avoid these. Hope this helps.x

Congratulations- this is such wonderful news!

Yes mornings are what I dread, and if I have dizziness and vertigo this is when I am most likely to experience it. I can feel so ill I think I should go to the ER some days, but by the evening I can actually sometimes feel remotely human! My BP readings are at their worst in the morning. Standing I can have 90/75 which doesn't show much blood flow is happening. This improves during the day with fluids.

My pulse pressure is a major issue especially in the mornings and it's worse in hot weather. Sometimes it is too bad for my machine to read it, but 90/80 is not uncommon for me and this will usually cause dizzyness and headaches. This is my warning to drink more and take in more salt.

I have been feeling a lot of head pain these last few days- not dizzy yet but imminent I think. I stood for too long in the sun and ended up having what felt like a panic attack or rush of adrenaline. I am sure heat makes me so much worse. The headaches are dreadful and last all day. Hope you feel better from the dizzy spells soon.x

Sue- I am 50 too and have these symptoms but I think they are pots. I too have the " light sweat in weird places like the inside of my elbows(bent arms)". I am still having regular periods and must be heading for menopause, but this sweating is something I have been having for many years. Do you get it between your toes as well?- as I have noticed that when lying down, especially in the morning when I wake up.

Hi Lissy, We are all human and want to have a good time sometimes and a drink or two. My problem is that if I drink I will get a racing heart when I lie down which can go on all night. It is dreadful. Is that your experience - feel ok and then as soon as you lie down the trouble begins? Food with a drink is sometimes possible with me, alcohol on an empty stomach or with a light meal like a salad is a disaster. I go on to have a very disturbed night full of adrenaline as my heart beats forcefully all night - that's why I rarely drink anymore.x Sue x

I wonder if anyone can identify with what happens to me when my POTS is bad. I actually had quite a good day yesterday, and even had enough energy to clean the bathroom! I did though feel quite full of adrenaline, which usually accompanies these "good days" Then as soon as I tried to sleep I could feel my heart racing, and I was agitated and felt strong palpitations. In many ways I think these episodes I get mirror those felt by Austin on the superb DINET DVD, who said hers occured during the night. I didn't sleep much and as a result feel rather shattered today. I did notice earlier in the week some low BP and low pulse pressure readings especially on standing and some giant pulse rises- so guess it's a flare. Can anyone else identify with these heart episodes at night? Thank you Sue xx

The difference between the top and bottom readings is very small for me when I stand. Sometimes it can be as low as 85/70. I have always had this since getting sick so you are not alone! Mornings are so much worse before I have had a chance to drink enough.

Yes Erik I understand exactly where you are coming from. I too have CFS and sometimes it is difficult to see what is another infection and what isn't. My POTS is part of having CFS and find that the symptoms overlap so much.

I can't stay in bed for any longer than 8 hours as I get too dehydrated and it makes everything so much worse. I think getting to bed early and getting up early seems to be the best plan, as prolonged periods in bed make me very ill indeed.

I get this when I am in a bad patch-which is right now. I had no sleep last night because of this and feel shattered.xx

Doea anyone find that when they are really ill with POTS that they also feel very flu like? This week my POTS symptoms have been very bad, but I also have sinus pressure, vertigo, and a fast pulse on standing-worse than my normal bad, if you see what I mean. I feel like I have a massive head cold but without the fever or flu. Does this sound like something anyone else has experienced?

I will often get dizzy lying down, especially when moving position, and often towards the morning when I am dehydrated. The headaches are worse then too, and I often wake up in a pool of sweat, especially my toes and hands. Despite many problems being to do with standing I am sure that many symptoms persist at night, as I am often woken up from sleep with vertigo and the room spinning. Anyone else?

Hi there from a very chilly Essex! I am in the same boat as you but find eating salty foods does help. I use Nuun rehydration tablets first thing when I am like this and they really help. You can buy them online and they contain electrolytes,you just add a tablet to water. I also make a lot of soup and add salt to those. Hope this helps xx

Does anyone wake in the night in a pool of sweat? I am suffering with this a lot at the moment and wonder if it is connected with POTS as this is also flaring up dreadfully just now. It is snowing outside but I will often wake up in the night to open the window, and yet yesterday I went out in the snow for a few minutes, and could not warm up at all until I had a hot bath hours later. Does this sound familiar? The back of my hair is dripping in the night at times and between my toes, and this will always be in the nights when I get up and find my pulse racing in the morning on standing. Can anyone identify with this and any ideas to reduce it?

Mornings are the worst time for me until I have had a few drinks to get hydrated. The main issue seems to be low blood pressure which is usually less than 90/60. On rising the pulse shoots up by 40 or so, and the already low BP numbers get closer together, until there is very low pulse pressure between them-so 80/65 is not uncommon for me,when I first stand up. Does anyone else have this low blood pressure after a night in bed, and what if anything helps to avoid it falling too much? When I go to bed it is often not too bad-110/60 is quite common, but a night lying flat seems to cause it to drop like a stone.