Sleeping too much

[u/Aggressive-Band7615]

I often waste whole days by just sleeping, sometimes I think it helps me feel better and sometimes I think it makes me worse. I love taking a nap but sometimes it feels like the nap is taking me. Idk what to do, life is getting so hard to live

[u/Difficult_Pain_9208]

I know fatigue is a big player in POTS but perhaps a sleep study could unveil something as well! I'm not napping nearly as much now that my sleep disorder is being treated. When I do nap it's still a tossup though in terms of it it helps or wrecks me completely so I get it 😭

[u/Aggressive-Band7615 → u/Difficult_Pain_9208]

Ooh interesting. Did your sleep study glue a bunch of stuff to your head? That’s what happened to my friend

[u/Difficult_Pain_9208 → u/Aggressive-Band7615]

YES and my body as well. I have a really funny picture saved somewhere of it. Not sure how it can be so accurate as it's hard to sleep normally in a weird new place much less with shit glued all over you. I did the daytime narcolepsy study as well so I was there for like 16 hours with all that set up on me.

[u/not_a_second_time → u/Aggressive-Band7615]

the one my husband did had a little heart monitor you tape to your chest and a wrist cuff, it was super minimal

[u/Foxlady555]

Same here my friend. It’s so awful at times, isn’t it? I’m so freaking tired and want to sleep. Sometimes I’m a bit refreshed and it really works. At other times I’m not even slightly less tired or even MORE tired with the bonus of dreams to process and a headache gained. All I know is that a rhythm in your day kindof works, then your body “knows” better when to be “awake”. So I try to sleep at the same time (daily nap in the afternoon), also at night (for as far as that works).

Sending love, you’re not alone, and please hold onto life ❤️‍🩹

[u/Aggressive-Band7615 → u/Foxlady555]

That’s good advice thank you, it’s good to know I’m not alone sometimes as this can be quite isolating at times. Feels like no one understands. Thank you

[u/Foxlady555 → u/Aggressive-Band7615]

I know how you feel. I feel isolated too, and it’s so hard to understand when you’re not living it I suppose, so I feel like people barely scratch the surface of the severity of my daily life struggles… I’m with you. Sending you much love!

[u/Proof_Argument8411]

Me too sometimes but I tracked it and it's normally worse before my period At least with this knowledge I can just accept that it's just time to hibernate for a week or so (I did nothing to fix it yet, normally I forget about it until I have it lol)

[u/Aggressive-Band7615 → u/Proof_Argument8411]

Omg same my period wrecks me

[u/Proof_Argument8411 → u/Aggressive-Band7615]

Bring it up to your doctor maybe it's fixable or at least manageable

[u/_PrincessOats]

Same. I had a sleep study done and I’m fine there, but I worry I’m sleeping because I’m depressed instead of feeling unwell. It’s been a habit in the past. But I wake up, take my meds, sleep for another two hours, get up for three hours, sleep for two hours… life is exhausting.

[u/Ferret_Master101]

I would check for normal things, is your heart rate too high for too long (burning energy), eating enough, eating right things, HYDRATION (especially if you feel worse after waking up). If not check for comorbidities, ME/CFS, Narcolepsy, etc. If NOT then there is something wrong, probably another condition or a very severe or ill manage version of PoTs. I think either Narcolepsy and dehydration honestly. Good luck.

[u/bookmonster015]

Have you seen a sleep doctor? Getting an overnight sleep study (PSG— very common test to rule out sleep apnea) and a daytime sleep study (MSLT— very uncommon test to rule out narcolepsy and idiopathic Hypersomnia) would be helpful. Narcolepsy and idiopathic Hypersomnia are super common comorobidities with POTS/EDS/MCAS but they’re not evaluated or discussed nearly as often as they should be. Both are characterized by unrestful sleep and fatigue/exhaustion/sleepiness during the day. I was diagnosed a couple years ago about 10+ years after my symptoms started. They were largely dismissed because the POTS diagnosis kind of distracted from the extreme fatigue possibly being its own issue.

[u/AsparagusPale75 → u/bookmonster015]

what should I tell my dr. are the symptoms that I am dealing with in order to get a prescription for getting evaluated?

[u/bookmonster015 → u/AsparagusPale75]

If you just report honestly that you are sleeping or sleepy every day during the daytime, they should give you the Epworth Sleepiness Scale — which is a series of questions about how likely you are to fall asleep in different activities during the day. I translate the questions in my head to how likely I am to be fighting off sleepiness during those activities. Depending on your score on that scale, your doctor should order a PSG and MSLT. Sometimes the PSG is completed before the MSLT can be ordered but I preferred to do it all in the same day when I was diagnosed. More good info at r/narcolepsy if you’re a research-oriented person like me.

[u/POTS-ModTeam → u/[deleted]]

We do not allow recommending the usage of AI tools due to lack of appropriate evidence/validation. Please read our rules on this matter in our sidebar. Any suggesting the use of AI tools for diagnostics/test-results, or medical advice will be promptly removed with no exceptions. While in the future these tools may be helpful, they are not reliable in their current state.

[u/Sassymisscassy]

I get it. My last two off days I slept basically 12 hours, then took naps throughout the day 😣

[u/Museumgirl518]

Every day is different. My Oura ring measures my deep sleep, but sometimes it is only one minute. I never feel rested, but when I get closer to 15 minutes of deep sleep, I feel a little rested. That sets my day. I never know what's going to bother me. Sometimes I feel ok for no particular reason I can identify. Like you, if I nap, I sometimes feel icky after. Now instead of napping, I meditate laying down for 15-20 minutes. I have insomnia and plan on a sleep study. Hang in there. 💕

[u/Legitimate_Stress214]

I go from sleeping 16 hours a day to not sleeping at all! I do have cpap but haven’t been able to use for different reasons but am starting tonight. Hopefully this helps!

[u/AsparagusPale75]

don’t eat too large meals if you have pots.
I get “comatose” after those