This doesn't happen EVERY night...probably 10 days out of the month, every month.
It seems that almost immediately after I get into bed all of my symptoms start up. It has to be related to laying flat(with a pillow)because I can lay on my reclining sofa with no problems.
The symptoms I am talking about are:
-racing heart
-shortness of breath
-pain and pressure in my head, eyes and face
-muscle twiches
-It felt as though I had the chills on the inside of my body(weird, I know)
-inability to sleep(it takes hours to fall asleep)
-nausea/gagging
-I get very agitated. Not in the sense of being frustrated. Just completely agitated inside and out.
-Every time I begin to doze off I am overcome with a startled feeling.

BTW, this is extremly intensified if I am stimulated earlier in the evening. By stimulated, I mean if I went out to dinner, or if I was at a social gathering(I do not drink alcohol so that is not an issue for me). A couple of weeks ago my husband and I had dinner at a restaurant that had a blues band playing and when I tried to go to sleep that night I went into a major flare. It felt as if my body went into complete shock from all of the stimulation. It was hellish. It felt like the night would never end. I will not be going back there for a long time(if ever!) because of how sick I got that night.

I am just wondering if any of you experience anything like this. Does anyone know if it is the dys? I will be seeing my doctor on the 13th and I will bring this up to him again. Last time I asked him about it he said he wasn't sure what would cause this.
I am trying to get a new doctor, he is within the same clinic as my current doctor, but they are giving me problems about switching. They say it is an ethical issue. The one I want to see is supposed to be really good with dys so hopefully I can get that worked out soon.

In the meantime I wanted to see if any of you have any ideas on the cause of this. I have my own thoughts on it, but maybe someone has some factual info.

Thanks,
Molly

Maybe something is pressing on the vagal nerve? Or have you been double checked for other types of dysautonomia? The more frightening ones come to mind when you say that laying flat causes you problems...


I guess I'm lucky I can at least relax when I lay down, sometimes that's all I can do.

When you say more frightening types of dysautonomia come to mind, which are you referring to?

I do get symptoms while lying down, most of the time my heart races. I rarely get tachy, but when I do it's while being flat on my back. I also have an issue with adrenaline, feeling too much of it or getting startled very easily. I wonder if it's something like that when you're getting ready to go to bed.

michelle

strange-wings - how would one know if there is something pressing on their vagal nerve - is there a test for that?

Mollybees - maybe it was just too much stimulation for your ANS and it went into complete overdrive when you got home.

Does anyone know what the other, more frightening types of dys are? I would like to read up on them and their symptoms.

Hi, Mollybees,

I don't really belong here, as my "wacky nervous system" (actual doctor quote LOL) doesn't really bother me to the degree that most people here experience.
That said, what brought me here in the first place was/is something like a very very mild version of what you are describing.

Simply put what seems to happen to me (started about a year ago, so I noticed it and not just put it down to "pshaw! yet another way in which I'm bad at sleeping/falling asleep", 2 distinct periods of this so far (that can't be blamed on drinking too much or such), now I have a beta-blocker to help me) is this:

I lay down. My bloodpressure drops, as it should.
My heart (or whatever mechanism that "syncs" heart rate & blood pressure) thinks the pressure is dropping too much => ups the heart rate to compensate.

This *shouldn't* be a problem, it is normal regulatory mechanism. It is just that sometimes the "gear" gets stuck a bit too high (nothing dramatic, 85-110 bpm), and the "gear" for bloodpressure gets stuck a bit too low (nothing dramatic again, 100/55). And it feels really lousy. And a heart rate of even 85bpm is just not compatible with sustaining sleep.

So far I haven't been extensively tested, just some blood work-up and an EKG, that showed that *most probably* nothing bad is going on. A beta-blocker helps - it's just inconvenient because it takes ~1h for it to kick in.

Upping my intake of salt, and licorice, also seems to work (slowly - after 1-3 weeks of lots of salty candy etc and I start to forget where I put the betablockers).

When this nightly dis-adjustment was combined with some bad day-time stress, and before I had betablockers to bring my pulse down, I too started to feel quite agitated and anxious after a few days of constant mild tachy-cardia. I am very not prone to anxiety, and I *knew* it was quite natural, but it was still very, very nasty.

Thanks for all of the feed back.

I am wondering if anyone can elaborate on the vagal nerve thing or even on the other types of dys that could be causing the symptoms I mentioned above. I am hoping that by finding out why this is happening I can at the very least minimize how often it happens.

One more thing, I also experience a constricting feel under my ears, in my throat and front and sides of neck. Not sure if that could be a sign of vagal nerve constriction.

I don't remember which form of dysautonomia you have - most here have POTS so I'll assume it's probably that, but which type? If hyperadrenic then your symptoms could be explained by adrenaline. If not, then I wonder if your sympathetic nervous system is getting out of hand some how? Is it possible to switch or progress types?
Maybe it's just me - I would consider that form worse and a bit scary, but then I wouldn't even know what to do if I ever had my blood pressure swing high.

As for the vagal nerve, that I could only see if you had some sort of neck instability and/or a lesion on the nerve. Who knows..

Aspsusa - My BP drops when I lay down, more as I relax and who knows how low when I sleep. While it's a "normal" response, I don't think behaves as it does in healthy people.

I suspect my HR falls into the 40s bmp when asleep and BP may even drop to 40s/20s sometimes - 50s/30s while awake is common. How low is too low? And when is it damaging due to lack of blood and oxygen?

I dread going to bed at nights because lying down does make my symptoms worse. I'm much better when propped up by cushions on the couch with my feet elevated.

The worst is going to sleep. Because I wake up from sleep feeling like hell or sometimes 'worse than that' if it's possible.

I can't lie flat with just one pillow and if I wake and find I am lying flat on my back and with no pillow under my head I also find I have a very bad migraine.

I'm hoping that they will find out I have sleep apnea and that a CPAP machine will help.

I do have many symptoms while lying down including near syncope sometimes. When I lie down at night I have to prepare myself for several minutes of feeling like I'm rocking on a boat or falling through my bed. Mollybees, like you, this is worse when I have been very active. I often say I have to readjust to gravity each time I stand up or each time I stop and sit or lie down.
I never lie completely flat at night but keep myself propped up on lots of pillows like blueskies.
The vagal nerve runs from the base of our brain all the way down our entire spine. It is affected by many things on the way down. Any pressure on it (for me sneezing, coughing, bms, digestion, etc.) can potentially trigger a reaction. For some of us, we have very overactive vagal nerves.
It's all so complicated. I wish I had definite answers.....

i just posted a question about the vagus nerve, before reading this one, because i suspect problems with mine as well.
maybe we'll get some answers!
as far as you becoming symptomatic when you lie down, i can't completely relate as i am symptomatic all the time these days, but i did have a wierd response during the tilt table test, when i was lowered into a lying down position. i didn't have anything happen when i was put up, which tends to be the case in everyone diagnosed with dysautonomia, but i had a severe bout of sinus tachycardia when i was lowered. my doctor told me that this was the most unusual thing he has ever seen, and has still been completely stumped as to why it happened when i was lying down, not when i was put into the standing position. it is the opposite of what he expected in someone with autonomic dysfunction.
so, although i was diagnosed with pots, i didn't have the "pots response."
hope you learn more about this! i'm very interested!

Gracie - I was diagnosed with POTS and IST. I think you said you have IST. My understanding is that IST episodes can happen while lying down, sitting down, whenever the signal gets tripped (as I like to describe it). My POTS episodes are specifically related to my standing or sitting up but I do have those episodes while I'm sleeping (have shown up on my monitor) or lying or just sitting watching TV. These are usually considered to be IST related. Straight IST can often be treated successfully with ablation but if you have POTS or other dysautonomia along with it, that makes an ablation difficult and not always advisable. Anyway, just sharing with you what I was told. Hope it helps some....

I know that some of you have Chiari malformation or are familiar with it, can that compromise the vagal nerve? I had the Chiari malformation decompression surgery two years ago, but still have a lot of neck and neuro problems (I have significant congenital spinal stenosis which probably causes most of my remaining neck and neuro symptoms) I had a large syrnix before the operation, that has now reabsorbed itself. Could any of these things affect the vagal nerve.

I haven't done any of my own research on this yet because it just occurred to me that this could be a contributing factor ( that is, if I have a vagal nerve issue). I guess the "light went on" so to speak, after reading these last few posts. I will see if I can find anything on the web in addition to discussing it with my neurosurgeon. But if anyone knows anything about this I would love to hear your thoughts!

-Strang_wings,
Yes, I have POTS. I am going to ask my doctor if my sympathetic nervous system could be out of wack. Maybe that is a possibility.

-Blueskies,
That is exactly how I put it to my family, I dread going to bed. I can't wait to crawl into bed after a long day, then I get there and my body goes completely haywire. Then I can't wait to fall asleep and wake up in the morning just to get it over with. It is awful. Sometimes I feel like there is no end to all of this. I am sick during the day and then comes night which can literally be a nightmare (no pun intended!) I sure do hope this will get better one day.

I have also noticed that stacking pillows can make a difference sometimes. There are other times where everything is just too out of control. The only thing that helps is letting time pass and trying to stay as relaxed as possible while it is happening. My husband is really good at doing what he can to relax me during these episodes so it helps to have that support. I wish that everyone who is going through any form of dys had a good support system. I know that some people feel alone in this illness and my heart truly goes out to those of you who feel that way. I can't imagine dealing with this alone.
Molly

My son's doctor says that sleeping on a tilt is much better than stacking pillows. Put something like blocks of wood at the head of the bed, between the mattress and boxspring, to create about a 30 degree tilt. It took a little while for my son to get used to it, but he did. The doc said that when you sleep with extra pillows, your upper body is elevated but your lower body is completely flat, and that cause more problems. Something like that.