POTS insomnia

[DickinsonsMeadow]

I've been having a lot of trouble getting to sleep. Part of it may be all the lying back I do during the day, but I wonder if anyone has suggestions outside of the usual sleep hygiene tips.

[bumpkin]

I think my sleep routine didn't settle down until I got into a habit of doing the breathing exercises (there's breathing apps where you can adjust the counts to what works best for you.. 6 seconds in/6 seconds out has worked well for me)

There's also some frequency/meditation/white noise type tracks out there on youtube and spotify that can have a calming effect when used along with the breathing

The symptoms can make it troublesome to fall asleep, so whatever you can do to get those under control during the day can help a lot leading into bedtime.. I found getting my blood sugar more stable throughout the days helped a ton. Also having a protein snack before going to sleep seemed to get the night sweats and the middle of the night heart racing episodes in check. 

Magnesium biglycinate powder was also helpful for me before bed, worth asking your doctor about. I try to remember to take it but nowadays my daily routines pretty good to where I'm usually wiped out enough to nod off, as long as my blood volume is alright.. sometimes I go to doze off but just feel like death and need more salt water or electrolytes first. 

[DickinsonsMeadow]

Thank you so much, @bumpkin. Those are great suggestions, and I will definitely try them.

[MikeO]

14 hours ago, bumpkin said:

Also having a protein snack before going to sleep seemed to get the night sweats and the middle of the night heart racing episodes in check. 

check \| haha. i listen to space patrol gets my mind of not being to fall asleep. i even jump into a episode as a character and due dream some out it. Lol

[bumpkin]

1 hour ago, MikeO said:

check \| haha. i listen to space patrol gets my mind of not being to fall asleep. i even jump into a episode as a character and due dream some out it. Lol

Yeah now that you mention it that does sound like it could be helpful, sometimes you just have to find the thing that'll take your mind off of the panicky dying feeling. An old coworker once told me about an absurdist/surrealist story podcast they liked listening to at night, think it was called Nightvale. The narrator had a sedating voice lol.

I dig stuff like that but once the overstimulation strikes it tends to be too much for me to listen to anything more than ambient noise by that hour, sucks cuz I love video games and listening to interviews and shows and stuff, but that's only a good time if the ol nervous system can handle it, it's been a long while since I've played any games. 

[bumpkin]

2 hours ago, DickinsonsMeadow said:

Thank you so much, @bumpkin. Those are great suggestions, and I will definitely try them.

Np yeah it's worth a shot, thankfully a lot of the tricks don't cost anything or aren't expensive if they do. Vagus nerve exercises are also another good one to look into, there's long lists out there of basic little actions that can help calm your nervous system. Nighttime with dysautonomia is just real overwhelming until you can finally figure out what routine makes sense for you.

[MikeO]

2 hours ago, bumpkin said:

once the overstimulation strikes it tends to be too much for me

yeah i get overstimulated at times mostly with too many things happening at once (pharmacy on a busy day is one). never got the adrenal rush term my take this is palpitations even in the DM world a release of adrenal is associated with palps do to high blood sugars.  

[bumpkin]

2 hours ago, MikeO said:

yeah i get overstimulated at times mostly with too many things happening at once (pharmacy on a busy day is one). never got the adrenal rush term my take this is palpitations even in the DM world a release of adrenal is associated with palps do to high blood sugars.  

Adrenal rush feels different than this for sure. My heart never raced that much when under intense stress/anxiety, had plenty of those moments growing up with a Vietnam vet for a father picking aggressive arguments with me all the time. Had me so sick to my stomach from getting in trouble over nothin most days that I used to pop Pepto chewablea like they were candy. 

The reactive hypoglycemia is a different kinda rush, the body wayyy overshoots when it comes to raising the heart rate. Messes with the gut a bit too but feels way different than anxiety.

The overstimulated panic/dying feeling is also different for me from the reactive hypoglycemia or anxiety/adenaline, it'll feel like my brains just run outta gas and it bricks on me, I'll do what I can as far as electrolytes and hydration and blood sugar go, but mainly have to lay down in quiet to wait it out. 

[Water Lover]

From what you’re saying about day activity levels, this may not be the case for you, but my physical therapist believes (and I think this probably correct) that insomnia is a PEM/PESE symptom for me. Our bodies are so paradoxical sometimes. I get this very particular form of insomnia that sometimes comes 2-3 nights after high levels of exertion (though it also pops up same night when I’m massively overstimulated shortly before bed). Working on pacing and energy management has helped, particularly against the backdrop of increasing exercise. (I don’t have ME/CFS. This is just POTS-related PESE.) It would be worth keeping track of activity and exertion levels just to make sure there isn’t any delayed correlation or anything. I wouldn’t have figured it out without the physical therapist noticing that it tended to hit 2-3 days after recumbent bike sessions, just because the delayed pattern is hard to notice and it’s so counterintuitive that exertion would make it harder to sleep.

The experience I’m describing feels different from ordinary just not being able to fall asleep. I become really oversensitive to sensory stimuli, feel shaky, have restless leg, get and get hot. It’s a distinct and specific kind of insomnia.

[bumpkin]

1 hour ago, Water Lover said:

my physical therapist believes (and I think this probably correct) that insomnia is a PEM/PESE symptom

My severe ME partner also gets this pretty badly after overexertion, will pop awake every couple hours all night long until the PEM eases and gets caught up on rest

[MomtoGiuliana]

When I am in a POTS flare I typically have insomnia and I am not sure sleep hygiene really helps much for me. Although it does help me to get up at the same time each morning regardless of whether I slept or slept much even if I am too unwell to do much more than move to the sofa.  Also, I think being out of the bedroom most of the day helps me.  Otherwise I am not sure what to suggest.  My last flare up insomnia was absolutely terrible.  Went as long as three nights in a row with very little to no sleep and many nights sleeping only 3-5 hours--waking up after only short times asleep, repeatedly jerking awake etc.  I had a lot of trouble with hypoglycemia like symptoms disturbing my sleep.  I tried lots of meditation, I tried yoga nidra recordings (which at least helped me get to a state of relaxation), I tried xanax (which did help some nights I think).  In desperation I tried ambien that did nothing for me--only took it two nights.  I tried magnesium--not sure if it helped or not.  The insomnia improved as my other symptoms improved.