Another trembling night

[ramakentesh]

I had another night of weird symptoms.

I get this sort of uncomfortable feeling in my upper stomach and find it hard to relax, then all my veins dissappear and my skin goes clammy, then my heart rate starts up and i feel like i cant get enough air. Then my vision goes weird and i feel dreadfully cold despite having a lower than normal body tempature (unlike a fever).

then my body trembles violently as if i am freezing for an hour or so and then it goes away - i cant sleep for the rest of the night well.

What is happening? Has anyone else had this kind of experience? Im worried.

[Guest tearose]

ramakentesh...you certainly have been going thru something...do you have a virus? Do you have a infection somewhere? Are you doing anything different during the day?

Is this only when you go to sleep?

feel better, tearose

[MomtoGiuliana]

All of those symptoms are POTS symptoms, and I have had similar cascading of symptoms like that (where one gets started and then another--kind of like a massive, lengthy "attack", one symptom seemingly building on another), although not exactly as you describe.

Can you talk to a doctor about these episodes soon? Have you had a holter monitor during such events? What do you do while having these episodes? Is there anything that helps stop them? Do you think panic could be playing a role (many POTS patients have "panic" attacks)?

Take care,

Katherine

[Gena]

I agree with Katherine...they are most likely POTS symptoms. I used to get those symptoms often (over the summer) and they are usually part panic attack for me and part POTS...i don't know which comes first, the chicken or the egg, but, either way I beleive it's all part of the layers of complexity that POTS brings upon us. I too will sometimes shiver and tremor uncontrollably like I'm cold after these attacks. But first my body usally gets hot first. I've never had panic attacks until I got POTs about 6 months ago, so it's something I've finally learned to accept. I get the same heart racing, funny vision, kind of surreal, dizzy feeling, and then sometimes I get the tremors and sometimes I don't. I've had the tremors last for a while. (These attacks only happen to me at night, I dont' know why). I always wondered if the tremors are your body's way of adjusting everything back to normal, (HR, BP, temperature, etc).?? Just a theory.

[violahen]

Hi:

These sound like typical POTS symptoms to me. I have had many of this type of episode...always at night in bed.

My body tends to be extremely sensitive to postural changes like lying down. I know lying down is supposed to be helpful, but my blood volume and BP tend to be so low that lying down is problematic. It just makes everything even slower/lower. Ther body's reaction is then to try to conteract it....that's where the racing heart comes in.

The disappearing veins sound like a drop in blood pressure. For this all I can suggest is super-hydrating yourself. Drink A LOT of fluids. OFTEN. This can help boost up the volume.

In terms of the postural stuff. I ALWAYS need to lie down with at least two pillows under my head. I actually can't lie down with anything under my head without fainting. I recently found out that the reason why is because my heart actually STOPS beating if I lie flat. This was documented in the hospital after I complained about the problem. You may have a similar type of problem. Again, the body's reaction to that type of thing is to freak out and an have the heart race out of control.

Good luck!

Kristen

I had another night of weird symptoms.

I get this sort of uncomfortable feeling in my upper stomach and find it hard to relax, then all my veins dissappear and my skin goes clammy, then my heart rate starts up and i feel like i cant get enough air. Then my vision goes weird and i feel dreadfully cold despite having a lower than normal body tempature (unlike a fever).

then my body trembles violently as if i am freezing for an hour or so and then it goes away - i cant sleep for the rest of the night well.

What is happening? Has anyone else had this kind of experience? Im worried.

<{POST_SNAPBACK}>

[Guest GayleP]

I get something similar and I think I posted before that Dr Low called it an autonomic storm. Name seems to fit. At least that's what he thought by my description. I can get that feeling for a whole day, it really is awful.

I'm also usually very cold when I feel that way and my temp is very low. Not much helps except riding it out, sometimes with 1/2 an ativan and heat.

I hope you don't get to many more of these events. It's like being on a rollar coaster ride.

[ramakentesh]

Before when ive had these cascade or attack of symptoms ive really feaked out and as such panicked and thought that maybe its to do with panic attacks, but the last two times i have been quite calm and detached and just sat there trying to document everything that is happening - the initial pain in my upper stomach, the sudden feeling of being unable to get air - like you breath in but your still needing air when your fully breathed in - then i get a surging feeling in my neck and head and my vision goes weird - surreal is the perfect description - it will also fill up like when you have ust seen a bright light, and then i will get sooo cold and start to tremble violently - inderal does help, but the incomfortable feelingi still present.

Ive had this happen seven times since i got POTS and 5 out of seven times were at night just after i hoped in bed, and they were precipitated by alcohol use about one to three days before (we are talking moderation here though - like a glass of red wine or a light beer at a friend's bbq).

I remember my grandma telling me about her dad who had 'nerve complaints' and used to 'tremble' for an hour then be spaced out - sounds identical to these sudden attacks.

Autonomic storm - that describes it perfectly. The sympathetic nervous system going into chaos...

The first time it happened i was at the emergency department sitting there passing out and losing it and they were like 'um, we dont know whats going on - your blood pressure seems fine, but your passing out.'

[Guest GayleP]

I like your description of things being surreal when you get that feeling. My vision also does that, in fact it often feels like I'm having a bad side effect from a medication except that I haven't taken anything.

You mentioned alcohol. Sometimes 1 beer makes me feel a little better. I'm not sure if there something in the beer, like hops or B Vitamines that helps calm the autonomic stuff down.

I know with me that nothing really triggers an" autonomic storm", I just get them from time to time for no reason and then am really happy when the feeling goes away.

[MomtoGiuliana]

One glass of wine can bring on POTS symptoms for me. I can actually feel the blood draining from my upper body after I drink alcohol. So I avoid it! Over time this has gotten less pronounced though.

[ramakentesh]

Thanks all for replying to me - its reassuring to realise that others are going through with the same stuff that you have to deal with from time to time.

The feeling usually sort of stays around for about three days or so and now its cleared thankgod...