Continuation- is POTS & Dysautonomia reversible

Hey Aerose.....I just thought I'd check the forum before going to bed. (It's 11:35 p.m. here)

I had sleep issues for a long time prior to treatment....and even for months after treatment started.
Not quite the same...but possibly caused by dysautonmia.

I would get to sleep, but would be jolted awake every couple of hours - in a panic, and sweating.

Then after awhile of treating the infections....slowly they resolved during the night, but would still have the morning waking - with anxiety and sweating.
Now...I don't have the sweating anymore.....except a mild sweating on the backs of my hands (used to be also on my face and back).

I hadn't attributed it to dysautonomia ...but I also have the POTS - ie raised heart rate upon standing from sitting...so it likely is that.

Don't give up....

This for me is every single night. I honestly can't remember the last time I slept. it's one of if not the worst things I deal with. No matter how tired I am my body just wont let me sleep

I think you mentioned DNRS in a recent post. How long have you been doing DNRS? I ask because within the first couple of weeks, the nervous system can fight back against being rewired, and there can be troubling neuro symptom flares. The videos don't mention this phenomenon because they don't want to set the expectation, I guess, but my LLMD talked to Annie Hopper at a conference and she said it was very common to have a rough first few weeks. For me, the rough part dissipated mostly within ten days and entirely within a month of consistent practice. (And by "practice" I mean not just the steps, but the 24/7 mindset changes, which can be way harder!)

Not getting to sleep feels like torture. It's such a crappy thing to deal with. Do you notice any help from CBD?

People shrug off essential oils, but I have not had any sleep issues since I used them for a few weeks at bedtime a few years back. I just put a few drops on a handkerchief and set it beside my head on the pillow.

Try using that unwanted awake time to practice meditation, guided visualization, progressive relaxation, or other mindfulness practices that are compatible with staying in the dark in your bed. Then, even if it doesn't get you back to sleep, then at least you won't feel like your time in bed was wasted.

Some people also have this trouble when they are chronically sleep-deprived, and going to bed earlier (even if you don't fall asleep earlier) can help.

Do you follow the guidelines for sleep hygiene - dark room and/or eye mask, no screens near bedtime, no stressful thoughts or conversations, no food after 7ish, consistent sleep and wake times, etc.? I find that any jolting awake can become a habit that's so hard for the body to break. Do you get plenty of sunlight, any exercise? Are you herxing right now? What about time on the earth or an earthing mat? Do you sleep near the wifi router, or in a room above it?

Just throwing out ideas....

I hope you find some restful sleep soon! This absolutely will not last forever.

Girlie- thats exactly what I have. But its every night, all night. I def have tried Valerian in the past, I'll try it again. Theanine is usually my go-to but that doesnt help.
darn. I treated lyme and bart and got nowhere. I'm at the point of believing its autoimmune and my gut must be playing a role

Aerose91 said...
Saraeli-

Thanks for your kind words. Firstly- my sleep hygiene is really good. No artificial lights at all after sundown, only some red if I'm reading something. I also try meditating during periods of wakeups (which ends up being all night) but I can never get into a zone- my body is too worked up. I'm just riddled with anxiety.
I cant exercise because the exercise intolerance is too bad but my circadian rhythms are on point. I get hours of sun every day, especially first thing in the morning.
I tried CBD, didnt help. Actually made my brain feel more shut down.

I did recently restart DNRS, I had sort of forgotten it for a bit. I encounter a couple problems currently. One is the level of my derealization. Its horrendous. A side effect t of this is that I cant feel anything. No emotions, feelings, presence, time... nothing. As awful as it is, it doesnt allow me to see through the DR. Its like a world you're stuck in.
The other problem I encounter is what you mentioned- I spend a lot of time so upset over this and seeing where my friends are at in life that I am often comparing or in a crappy mood because I'm down. Never sleeping just makes that worse. On top of it there are a LOT of things I want/wanted to do in my life and when I got sick at 26 I hadn't even scratched the surface on the meaningful parts of my life. It's nearly impossible for me not to think of those and all that's been lost. Very hard. And again, not sleeping exhaserbates everything.

Sorry for droning here, I just had a rough night and a difficult day. Sometimes I just have to put it out there. Thanks a lot for chiming in.

I know what you are going through. I also got sick at 26 (now 32), and had really bad sleep disturbances as you describe. They are called Hypnic Jerks and are a real PITA. I guess a minimal amount are acceptable in the healthy population and I do remember getting some before I was sick, but just not near as frequent. I would go to bed at 9pm only to jerk myself awake at the onset of sleep until 3 or 4 in the morning when I would finally fall asleep, only to hear my alarm clock go off at 6am. It’s the worst. Pain is fine and manageable, but sleep deprivation is just not fair.

Anyway, they are pretty much gone. I still get them but very infrequently. They seem to come in waves when I do (2-3 nights in a row, maybe 3-4 jerks each night), and do coincide with stress and anxiety I have noticed. I just kept on treating with abx and they eventually got better. Not certain there is a magic bullet. Try to relax before bed and take a bath and when you do jerk, don’t freak out and try to resume sleep, no matter how frustrating. One thing I have noticed is they are more common when I try to nap. Probably related to sleep schedule irregularities as well because I don’t nap that often.

Post Edited (Fronton) : 6/8/2020 10:05:46 PM (GMT-6)

I think another aspect of hypnic jerk is restless leg syndrome, where my leg has some unfinished business to suddenly do while I'm sleep-paralyzed, it was diagnosed during a sleep study...I take Doxepin and Trazodone, low dose of each and sometimes use peppermint and lavender oils on my hands and pillow. Maybe you could try those if you haven't. Now if I can only be mindful enough to always remember, and before I'm too exhausted, to use my sleep apnea machine...otherwise my body mostly hurts the next day if I don't get some good hours of sleep, only those Rx does that for me right now, or if I had a 60% energy day to do a few things, that little exercise sometimes makes better sleep.