Quality of sleep

[erinlia]

Every morning i wake up feeling terrible and very exhausted...like i have not slept good.  Have you learned any tricks for improving quality of sleep?  

[Roxy]

Have they ruled out sleep disorders…

[Sarah Tee]

I haven’t found anything that helps yet.

This lecture might have some useful info:

https://vimeo.com/357910876

(I watched it a while ago and can’t remember the details.)

[erinlia]

I guess ive never looked at sleep disorders.  I just assumed sleep issues were part of POTS.  Do you guys wake up feeling like you got the sleep you needed??  

[erinlia]

Thanks for this video link.  It looks like good info. 

[Sarah Tee]

@erinlia, I don’t have POTS, but I do wake up feeling unrefreshed. (I have chronic orthostatic intolerance.)

Funnily enough, I usually feel better in the evening, so I go to bed feeling okay and wake up feeling fatigued. Rinse and repeat, every day.

 

This is a survey of 5000 people with POTS that is handy for checking symptoms (noting that it’s important to get symptoms checked out in case they are not POTS):

https://pubmed.ncbi.nlm.nih.gov/30861229/

The article mentions poor sleep quality as being a common symptom, but oddly it wasn’t included in the survey as far as I can tell. So not that relevent for your question, but maybe useful in the future, and interesting if a bit sad to read.

[Jason_X]

My sleep quality tends to be absolutely terrible.  I’ve always been an extremely light sleeper. Here is what helps for me:

CPAP machine: A sleep study didn’t detect apnea, but it did show several Respiratory Effort Related Arousals (RERAs). Light snoring will wake me up before an apnea occurs. I LOVE my CPAP device. My sleep quality improved dramatically from it, but did didn’t fix everything. I use my CPAP even if I take a nap.

Avoid Monosodium Glutamate (MSG), Carrageenan, autolyzed yeast extract, and Torula yeast.  They are all pretty much the same thing in that they contain free glutamates. All will increase my heart rate and destroy my sleep quality.

Meds to slow my heart rate: Corlanor (Ivabradine) and Bystolic:  I will not sleep well with an elevated heart rate.  Both of these meds degrade my sleep if taken in higher doses, but a small dose is definitely helpful if my heart rate is up.

Amitriptyline: I can’t take it anymore because it speeds up my heart. However, it used to work REALLY well in tiny doses. The smallest pill is 10 mg, and ~2.5 mg was enough to improve my sleep significantly. I used to break it up.

 

Gabapentin:  100-300 mg. This stuff also GREATLY improves my sleep quality. It’s supposed to be safe in that it’s virtually impossible to die from an overdose from it.  It is commonly prescribed in doses >1000 mg/day for nerve pain. It’s also used in high doses for seizures. I know someone who takes +2000 mg/day.  However, it seems to lower my mood with time, and I have horrible withdrawal if I discontinue it too abruptly. I’ve spoken to two doctors who have never had this reaction from their patients, though I’ve seen others report similar withdrawal symptoms online.

[Dysmama]

My 17 yr old daughter has Dysautonomia but not diagnosed POTS specifically, yet. Her sleep quality was very low till she was put in Cyproheptadine 8mg for migraines plus I started giving her Sleep All Night by Akeso. With that combo (they do not help without the other), she falls asleep rather quickly and wakes less through the night, which were two big issues for her. But she would still often have a very hard time waking up in the mornings. We started taking her bp each morning and discovered a correlation with poor waking and low bp, often times extremely low (i.e. 89/48). About 6 weeks ago she started 2.5mg Midodrine, prescribed via cardiologist. Game changer! She used to pass out 5-7 times daily. That has all stopped! And most mornings she is waking up better with a decent bp level. It doesn’t work perfectly every morning, especially if she has pushed hard in her schedule or stressed out, but we are having more good mornings than bad with these three changes in her routine. I do give it to her about 30-60 min before she has to get out of bed. And the best part is less salt intake, which always made her feel even more nauseous and gave her stomach aches. 

[Ginger_]

I’ve been lucky enough to never struggle with sleep quality. I often fall asleep within 20 minutes of laying down and sleep straight through the night for 9 hours. 
 

i do find that with caffeine beyond mid afternoon can affect the time it takes to fall asleep, taking an extra half hour. Being on my phone (even in night shift mode) will also prolong how long it takes for me to fall asleep. 
 

recently I found I can tolerate melatonin supplements (2.5mg) and I will sleep even more soundly with that. Initially I could not tolerate melatonin at all, it would exacerbate POTS symptoms quite drastically, but my diet has since changed for the better and now I can tolerate it.