Pots Episodes At Night In Bed- Heart Fluttering, Paralysed

[persephone]

I've had this on and off since last year, but only very rarely.

But now it's happened to me the last two nights in a row, which has never happened before.

I feel like I'm half awake/dreaming but I'm conscious enough to know what's happening and to think to myself "is this pots?" I can hear my heart rate going absolutely bananas- like it has never done before. Must be the fastest ever because it sounds like a hummingbird, a constant hum with no space between bets at all.

Then I notice that I am utterly unable to move. I try to call out for my mum but I can't move or make any noise. It's horrible. I also get ringing and buzzing in my ears that is so loud it deafens me. What on earth is going on?!

I'm getting scared to go to bed it's getting so frightening- and I'm not easily scared.

Anyone else ever had this and had it investigated? If it's relevant, I woke up yesterday and today absolutely parched. And I sinned majorly on the food front- treated myself to a regular wheaty sandwich and some milk chocolate- just to make sure I'm still intolerant to those things! (but surely that couldn't cause this type of bizarre reaction, could it?)

[Gena]

Persephone,

So sorry to hear about your scary episodes. I am one of those whose symptoms mainly occur at night and mostly in bed while I'm sleeping -- or trying to sleep. My cardio at Mayo says find it interesting that I have this mostly "nocturnal POTS" thing going on.

Anyway, I've had the heart symptoms and adrenaline rushes and the loud buzzing in the ears, but never the paralysis. I will dream about being symptomatic b/c that's my body's way of saying "hey, wake up dummy and do something fast!". I find taking a tiny bit of beta blocker or a small dose of Klonpin can help -- either prior to or during these episodes. YOu should talk to your doctor if these are new symptoms for you or continue to increase.

By the way, you mentioned eating sandwiches and milk. Eating things like wheat and dairy, if you have intolerances to them, can wreak havoc on your neurological system, immune responses and other functions. I know from experience, as I have celiac and absolutely cannot eat any gluten. Prior to getting dx and going gluten free, I had all sorts of weird buzzing and ringing in the ears, twitches, whole body buzzing feelings, crazy heart rates and other strange symptoms. After going gluten free those symptoms went away. I still get some occasional ear sounds or buzzing, but usually only during a POTS adrenaline rush. It is well documented in research papers about celiac disease and other food intolerances disrupting other functions in the body. It is not just a digestive centered problem, as doctors used to believe (and many still do).

I hope you find some answers soon.

Hugs

Gena

[MNsue]

I have had a number of night time POTS episodes. I can induce one if I eat a high carb dinner and have something sweet for desert. Sometimes I don't know what I did to induce an episode. After a particularyly bad episode, I woke up the next morning unable to go up stairs because my left leg was so weak. I still have some left side weakness.

I hope you start to feel better. It is no fun to have these.

Rhonda

[Dizzy Dame]

Persephone,

I have similar episodes without the paralysis. The fluttering I feel is also accompanied by flashing lights in my head. I have these about once a week, and usually if I'm awoken suddenly...my cat jumping on me in the night is the most common cause of these episodes.

I'm going to see a neuro at Hopkins in a few weeks, and I plan to ask him about my episodes. While ours are slightly different, I'll let you know what he says.

In the meantime, you might want to go see a neuro yourself. Parylasis is no joke!

Hugs,

Lauren

[Be Still]

It could be something related to sleep paralysis. It's normal to experience paralysis when sleeping (otherwise we'd act out our dreams, hmmmm . . . ), but sometimes this kicks in before going to sleep or before fully waking.

I thought you'd like this link, because sleep paralysis is also related to lucid dreaming:

http://www.angelfire.com/co/SleepParalysis...oreInfoPar.html On this page, it describes some odd sensations associated with this phenomena, some of which you are describing.

There are many cultural references to this event, you might find it an interesting search.

[persephone]

That *IS* really interesting- thanks! Especially as dream visions are my area of research in my medieval literary studies.

But I still don't get the whole fluttery heart thing...that irks me slightly.

Thanks anyway tho!

[dizzygirl]

Persephone--hi dear--

I wanted to tell you that I know exactly what you are speaking of!!

that humming bird feeling in your chest... i get that.. only i call it the vibrating in my chest.. i get it sometimes before i am going to have a bad paralysis spell or right before my heart is going to take off and beat like mad..(200-240-ish heart rates)YUCKY

the parched feeling.. i get that too.. i'm sorry i dont know why.. during a bad spell in february.. right as the stinging was starting in my mouth.. my mouth got very very dry.. and I was beyond thristy-- and my tongue was stuck to the roof of my mouth.. and with in a matter of seconds i passed out cold..

the humming and stuff in your head.. does it sound like the vibrations or the sounds that refridgerator makes?? its what is sounds like to me.. did you pass out after the humming and buzzing got to loud??

I cant relate to what you are saying.. and going thru.. I wish that I had some advice to offer you to stop it or what it is.. but i dont.. my docs here in the states are stumped at the moment... and dont know what is causing these things to happen...

IS this the first time that you have woken up like this? Have you had spells like this in the past?

I ask b/c I have a few different types of paralysis spells.. once that you described.. and a few others.. none of which I' d care to go thru again...

PM or email me if you want to talk!

Can you ask your mom to stay with you thru the night for the next few nights to give you some peace of mind?? or talk to her and ask her to please check on you often thru out the night??

take care dearie!!

BIG HUGS

dizz

[persephone]

Linda, everything you describe- yeah, I passed out when the buzzing got too loud! Scary coincidence. but I've followed Gena's advice (I tihnk it was Gena) who said if you avoid wheat/lactose it goes away- it does seem to have improved things that I'm back wheat free again.

Why don't you cut bread and pasta for a week and see if it makes a difference?

I'm back in Oxford now so I can't ask my ma to check on me() but I'll be home again on Friday. I'm seeing the Cardio up here on Thursday and my GP again at home on Friday, so I can ask them about it then. I wondered if this could also in some way be linked to the MAOI I'm on- are you on anything similar?

I have had these episodes in the past, but only a handful of times.

[sstephan]

Hi,

When I was going through a very difficult POTS time about a year ago, I used to wake up in the middle of the night so severly nauseated and my heart would be racing. I would get the shakes and then wake my husband up to stay with me. He doen't wake up easily, and I would really be scared if I couldn't wake him up. I know how scary this is....I remember just staying up past midnight because I was scared to go to sleep. They ususally happened around twelve or one, so I thought that maybe if I stayed up late it wouldn't happen. God I do not want to relive those times. However, it got better for me and I know it will for you too. I guess it just seems as though this illness goes through good patches and rough patches. I just tell myself that I am not going to die and I try to slow my heart through deep breathing and the vasalva (sp?) Manuever.

Hang in there,

Susan

[Guest CyberPixie]

I get exactly the same thing, nothing to do with what I eat or drink, just if I've overdone it, have stress, my routines been thrown out etc. Can last up to 3hrs for me.

I've had it for years but it has got worse as the POTS has.

I also get it if I'm not asleep by 12am.

Kind of getting used to it now but whenever I tell a Dr about it they look at me as if I'm nuts!

[Lukkychrm42]

I've never had the paralysis bit, so sorry you're dealing with that, and hopefully a neurologist can help with that. I get the fluttery sensation a lot when I sleep. Not only does it drive me crazy and make it impossible to sleep, but it's also incredibly uncomfortable, and for me usually accompanied by shortness of breath. So last night I just got up and watched an episode of Gilmore Girls, and it eventually calmed down enough to fall asleep again. It's weird though, cuz on nights like this, I can't even sleep on my side without having difficulty breathing. Before, I would have taken another propranolol, but now I'm on different meds.

Sorry I'm not much of a help, but I hope you get through it ok.

[Dizzy Dame]

Persephone,

I just wanted to check on you to see how you're doing? Have you had any more episodes?

Hugs,

lauren

[Wufflebear]

I get something once in a while that might be similar...

I will wake up, (has happened anytime between 1am and 4am) but I am kind of locked in that half awake half asleep mode and I am in incredible pain, like paralizing pain. Usually the pain is right in the middle of my back like a stabbing pain that then seems to spread, it starts in a spot just below my left wing. And my heart is going a mile a minute and I am gasping for air and I cant move and feel totally panicked. I never feel panicked except when this happens it is like being locked in ****. Then It gets worse and I cant take it anymore, and I dont know what happens ,but everything goes silent (symptoms anyway) and then I 'wake up' and usually my face and pillow are soaked with tears and I am usually still crying...If I try and get up to get a drink of water and go to the bathroom ( I am usually parched at this point) I am guaranteed to have syncope or near syncope as soon as I stand up.

I dont like it at all.... I dont know what triggers it but it only happens every 2 or 3 months usually, but comes in little waves...like a few nights in a row...then it will go away for a while.