Very Bad Night

[Elenapap11]

I woke up again last night around 3am and i felt like fainting.My heart felt weak and i couldn't move my legs and hands.I tried to speak to my fiance who was asleep but the words wouldn't come out.It was really hard to concentrate and when i tried to stretch my hand to get my bottle of water my hand felt heavy.When my fiance woke up he was asking me if i was alright and i could barely say i am ok.I felt irritated and when i was trying to say something i was annoyed by the fact that i had to think hard to come up with the words.It took me an hour to feel a bit better.I've had such crisis before but i was sweating and shivering which i didn't yesterday.Yesterday i felt like something was wrong with my head.It was very scary.

Has anyone experienced that?I am thinking of having a new MRI to see if there is something else going on.

[Maisie87]

Elena,

YESS I have had this. It happens to me about one or twice a week. I wake up feeling like I don't have a body.. or my heart isn't strong enough to pump and my head is floating but too heavy to lift.. The words don't come out- my muscles have quit- and I feel like nothing is real, or I'm watching a hand that's not mine reach for the water. I'm scared but it's almost as if my body doesn't have the reserves to even panic. Like I[m kicking and screamin on the inside but have no way to show it because my body is completely detached from my mind.

It takes me a couple hours to recover enough to go back to sleep, until then, though, I stay awake because I'm to scared to let go and go back to sleep when my body is feeling like this.

I've taken my BP and HR during these episodes but the numbers were normal. I don't know what it is or why it happens- I think just another thing POTS throws at you. I know it's hard to think something like that could happen with nothing really wrong other than POTS.

When was your last MRI? Well doesn't matter, peace of mind is half the battle. Get another one to rule out anything new, and most importantly, to give you peace of mind.

dream sweetly

maisie

[Rachel Cox]

I have too. a nurse once told me that the body is at its weakest in the wee small hours. the defenses are down. apparently that is the time of night in hospitals and nursing homes when they have the greatest number of deaths too. not to say that we are dying, not at all, just that our bodies work pretty hard all day and I guess we wind down more than most some nights. it does make you wonder ...and fear for the worst. Interestingly, my pacemaker recorded an incident at 4am when i felt that way. It had to pace to get my heart rate back up, I had gone from 80 to 180 and back to 50 in less than a minute, without me even moving! I must have been having a pretty good dream!!

[Elenapap11]

Oh Maisie you've described exactly how i feel!I've read other people's stories so i know that it's a POTS symptom.I keep telling that to myself...it's just that recently i've been told by a doctor that what i am having is epileptic seizures and he also told me that i need to take meds for it otherwise i'm in danger of having a fatal seizure(!!)Of-course two other doctors ruled out that possibility and told me to keep taking my beta blocker.But you know how it is.You start wondering:'What if he is right?what if i need antiepileptic treatment?' Sometimes i've even wondered if i have a brain tumour which was not seen in my MRI.I'm sorry if i sound like a drama queen.I'm usually brave and optimistic.I don't discuss my worries with my family because they're scared enough already so here it's the only place where i can honestly say how i feel and what my fears are.

Thanks for listening (and replying ofcourse)

[ramakentesh]

Yeah that is how I first developed full blown POTS. After a run I felt dizzy, had a shower and felt better, went to bed and woke up at 2am with a pounding heart and nearly fainting WHILE LYING DOWN.

[lissy]

Maisie, You also described me also its the craziest feeling sometimes it happens to me even when I'm not awoken in the middle of the night. In a way I don't really know if its a surge or the feeling brings on a surge . A few times while drifting off to sleep I suddenly awaken like I wasn't breathing and it takes about 30 minutes to go back to sleep.

Lissy

[Maisie87]

Elena that's interesting what your doctor said about seizures. My doctors didn't seem very concerned.. and I know what you mean about coming to the forum with your worries instead of your family. It can be a lonely disorder- and I freak out enough, I don't want the people around me freaking out, too! haha. I guess when it comes down to it, I'd probably talk to them if I believed they'd really understand how I'm feeling. But I think only POTSers can do that.

Lissy, sometimes those episodes happen to me during the day as well. Not always in the middle of the night, but usually.

I also have the same problem when trying to go to sleep. I will start to dose off and slip into sleep and my body will jolt and I'll pop awake and alert, gasping for air, eyes wide open as if someone blew an airhorn in my ear.

In order to fall asleep, we have to completely relinquish control of our body and mind. We spend all day mentally monitering (at least I do.. can't help it) our BP/HR/water intake/salt intake/ medications you name it. And then all of the sudden we are supposed to just let it all go and allow our bodies to fend for themselves for 8 hours?? I don't think so..

It's just our bodies' alarm going off from percieved danger of losing control. Protective mechanism..

I just say to my body and mind, "thank you for trying to protect me, but I don't need you right now". This is what helps me.

rest and restore

Maisie