Sleep Disturbances

[ajw4790]

Hi,

I know there has been some talk about this before, but it has recently got really annoying again for me, and was wondering if anyone had any tidbits of knowledge or how many people experience this???

It is really hard to describe, because after the fact I do not remember much of what went on, but I know for the most part I have a hard time getting to sleep and staying asleep. I used to never dream (or at least remember anything), and since being on some of these meds (some worse than others) cause more vivid and memorable dreams. There is a lot more of dreams that seem to go all night and make me wake up more tired than I went to bed. Recently there have been a few that occur over and over, one dream is this hilly highway with a lot of cars and semi trucks... one of the semis jackknifes another one hits the breaks hard runs into the other. More semis jackknife and all of the cars are left to try to get through the maze... I am driving a car, and someone else I know is in a car behind me. So, it seems sometimes like all night I am making my way through this dream or similar ones. They are exhausting!!! I actually think I had this dream over 5 times before I remembered it during the day, and even now it took me a while to remember it. It is weird...

I have also been getting a lot more of the falling sensation as you go off to sleep. It isn't like when you nod off in class and startle awake, but the feeling like you are falling many feet (like off the bed). This does wonders for startling me and jumpstarting an ANS overreaction when I don't need it (not that I often do ). Sometimes this is multiple times a night... It is very annoying! Do others get this often?

Also, I see quite abit on here about narcolepsy and cataplexy, but I don't really think that I understand the whole spectrum of these disorders. Is there a good place of info anyone can recommend? How do most of you who have this or think may have it symptoms go? Sounds like many don't appear like the "average" narcoleptic?...

I used to fall asleep VERY easily during the day whenever sitting. In high school I could nod on and off a whole class period, every period, it was bad!!!!!! And I was in the front row, right next to the teacher. Very similar situation in undergrad, I actually think I slept through about 80% of Biology. I had the same problem some in grad school, but was normally when I just had a med adjustment. I also would continously nod off during standardized tests!!!!!!! I fell asleep during the state testing to move on a grade, I think for minutes at a time. I fell asleep like 30 TIMES during the PSAT. I also managed to nod off a couple times while taking the SAT!!! This was always so frustrating... I actually tried to keep mints and hard candy for something to do and a burst of sugar in my backpack during high school. I only helped a little!

Thanks for any insight!!!!! (or me too stories! )

[janiedelite]

I have also been getting a lot more of the falling sensation as you go off to sleep. It isn't like when you nod off in class and startle awake, but the feeling like you are falling many feet (like off the bed). This does wonders for startling me and jumpstarting an ANS overreaction when I don't need it (not that I often do ). Sometimes this is multiple times a night... It is very annoying! Do others get this often?

Okay, I was actually talking with my sleep doctor about this TODAY because it happened 2-3 times last week during my sleep study. He said that feeling of jerking awake during phase sleep sometimes is accompanied by the feeling of falling also. I notice it very frequently when my symptoms are flared. He said it was simply a result of being over-fatigued. For me, I notice it more often on days that I'm having more adrenaline/sympathetic symptoms. If anyone else has insight into this, I'd love to hear it!

Shortly after my POTS symptoms began, I started having vivid nightmares EVERY night that someone was trying to kill me. Since getting a diagnosis I still have vivid dreams most every night but they aren't usually so violent. Often, though, I find myself driving in my sleep over some bridge that appears to dead-end over a canyon or cliff, or I get lost while driving. Often my dreams are extremely emotionally or mentally taxing, and I can relate to feeling more fatigued afterward than when I went to bed.

If I go to sleep when my pain level is high, or adrenaline is pumping, my sleep and dreams totally reflect this.

[ana_22]

Before POTS i could fall asleep within 1/2 to 1 hour but i would sleep all through the night from 10pm to 8pm, i could even sleep till noon (i was at university!)

Since the day i crashed into POTS i find it hard to fall asleep and stay asleep, i often wake up 3-6 times a night. And i get up very early 6am.....i have no need to set alarms cos i know i will be up! previously i needed an alarm set all the time!!!! i cant even dose off during the day.....impossible....have not done it for a year.

i used to LOVE my sleep and now even thats gone.....i think it would be easier for me if i could sleep....cos then i wouldnt be conscious to my symptoms as much!

i hate pots.

[ramakentesh]

Ana 22 - im the same - i used to be a big and long sleeper, now its always interupted. I have vivid dreams when my POTS is bad and I also often wake up with a start or what you might call a hypnagogic jerk.

[firewatcher]

I am thinking that we have our "dream awareness" wired in, where most people have to take caffeine before bed to do this! The excess brain stimulation from the heightened fight or flight response actually brings us closer to what many scientists are calling lucid dreaming. OUR brains don't shut off the way they should while sleeping. I am very often aware that I am dreaming when I am asleep, and when I try to nap, I can sleep, dream and hear and be aware of the noises in the house (they just weave in and out or become part of the dream.) For most people, REM sleep (dreaming) is the closest in brain waves to being awake, that is why it is supposedly easier to wake someone in REM than nonREM. I think that for us, since our ANS is hyperactive, REM sleep is even closer in brain activity to being awake! No wonder we are so tired! The brain wakes up even while it is supposed to be shut down!

[Broken_Shell]

I think people have discussed this in the past, but I just wanted to throw in a note that the beta-blocker medications are known for causing vivid dreams and disturbed sleep. This is a side effect from them that many doctors and pharmacists forget to mention.

~ Broken_Shell

[EarthMother]

The new theory on the "purpose" of dreams seems to be that they are used as tactical training for the brain. In countries all over the world, researchers found that people universally dreampt about common themes, like escape or strategies for survival.

I think in POTS people we often incorporate a nocturnal ANS event into our dream plot -- by way of the mind trying to make sense of our Body sensations. (But that's just my theory ;-)

Despite my condition I still fall asleep easily at night. The vivid dreams and nightmares are intense and I often wake up in full arousal, or as last night with an audible scream and a jolt upright in bed. But I fall back asleep without muchado. I figure my body is working out whatever it needs to do to heal.

Sweet dreams

~EM

[potsgirl]

Hello Fellow Dreamers~

One of the most frustrating aspects of this disease to me is the inability to fall asleep and stay asleep. I have very vivid dreams, usually nightmares, and wake up several times a night. I'm so tired I usually turn out my lights by 8:30, and hopefully I'm asleep by 9-9:30. It never fails that I start waking up around 3 or 4 am, and then toss and turn until I give up and get out of bed by 5 or 6 am. Ugh...Sometimes I get so tired I'll take a Benadryl for my allergies and try to take a nap after lunch, but that usually doesn't work. I commiserate with the rest of you...If anyone out there has any ideas on how to sleep thru the night, please let everyone know!

Ciao,

jana

[Heiferly]

I take trazodone at bedtime because I was thrashing my feet like crazy at night and actually kicked a hole through our fitted sheet. (Tearing up the good high tc Egyptian cotton sheets was the last straw, so my sympathetic GP suggested trying the trazadone and it worked perfectly--the kicking stopped the first night I took it and hasn't returned.) I also take promethazine every 6 hours (including overnight, 24-hour dosing schedule) for nausea, which probably has a synergistic effect with the trazodone in promoting drowsiness.

Now that I just got diagnosed with narcolepsy, I'm not sure if the sleep neuro will want to change my bedtime meds, but for now, that's what works for me. I do have some awakenings from vivid dreams occasionally, but not as often as before I started the trazadone. And occasionally I wake with sleep paralysis, but I guess that's a separate issue.

I definitely have NO problem napping during the day--chalk that up to the narcolepsy I suppose. I drift off frequently whenever I'm only passively engaged in something (watching TV, reading, etc.) I did notice I wasn't drifting off as much throughout the day like normal while on vacation; I was much more hypervigilant in a foreign environment and that seemed to keep me awake a lot more.

[Guest tearose]

I have had more trouble for about a year and a half now. It is the dreaming that melts into daytime awareness and lack of restorative sleep...I can't tell how to make sense of these dreams. I want to let them go but some part of my consciousness understands that there is value in something there. It will go on for a few days and then pass. I am starting to understand that it may be the poor sleep on top of ANS issues that makes for these dreams.