u/Unfair-Reindeer-5433

Age: 22
Sex: Female
Height: 5’10”
Weight: 181 lbs
Smoking status: I smoke weed occasionally
Medications: Currently tapering off desvenlafaxine ER (previously 125 mg), methylphenidate ER 27 mg, Volnea birth control.

I’ve been struggling with severe insomnia for awhile, and it has progressively gotten worse. Falling asleep is incredibly difficult, staying asleep is just as hard, and I rarely ever feel like I’m getting deep, restorative sleep. I wake up constantly throughout the night for hours at a time, and during the day I’m exhausted but still can’t nap no matter how tired I am. I’m tired all the way down to my bones. I feel it everywhere this constant deep tiredness. I feel delusional almost and want to cry/scream because I want sleep so bad. I have mildly restless legs sometimes too. But overall just a deep tiredness that takes over me.

I’ve tried what feels like everything. No phone before bed, moving from the couch to my bed, changing my sleep environment, warm baths, stretching, sleep hygiene, and other lifestyle changes. Nothing has helped.
Every doctor I’ve seen seems to just prescribe another medication, but none of them have actually worked. I’ve tried clonidine and trazodone, and neither helped. I feel like everyone keeps treating the symptom instead of trying to figure out why I can’t sleep in the first place.
My iron levels are normal, so it doesn’t seem to be related to iron deficiency.

I was recently told I have beginning stage lupus based on my autoimmune workup, although my doctors said it isn’t fully diagnosable yet because my disease markers aren’t high enough. I also have POTS and sinus tachycardia. Along with the insomnia, I experience significant fatigue, brain fog, dizziness, joint pain, temperature regulation issues, and other symptoms that have been getting worse over the last couple of years.

The only place I’ve consistently been able to sleep was during a two-week psychiatric hospitalization. Outside of that environment, nothing has helped, and it only worked because they gave me medication (this was December 2025). Even when I’m physically exhausted, I just can’t fall asleep or stay asleep.

At this point I’m wondering if there’s an underlying medical reason everyone is missing. Could POTS, an autoimmune disease like early lupus, or something else cause insomnia this severe? Has anyone experienced anything similar or have suggestions for testing or specialists I should ask about? I’m tired of just being given another sleep medication without anyone trying to figure out what’s actually causing this.

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Age: 22
Sex: Female
Height: 5’9”–5’10”
Weight: 181 lbs
Country: United States
Smoking status: Non-smoker. I don’t drink and occasionally smoke weed.
Current medications: Methylphenidate ER 27 mg, Volnea birth control, currently tapering off desvenlafaxine (SNRI).
Medical conditions: Sinus tachycardia, possible POTS (currently being worked up), positive autoimmune blood work. My rheumatologist believes I’m in the beginning stages of lupus, but I don’t meet the full criteria for a diagnosis yet.
Duration: About 1 year, progressively worsening.
Has anyone experienced something like this or have any ideas what could be causing it?

For the past year my sleep has completely changed. From what I’ve read, my situation doesn’t seem to fit what most people describe because I can get 6+ hours of sleep sometimes. The problem is it’s almost never continuous. I’ll sleep for 2 to 3 hours, wake up, eventually fall back asleep, wake up again, and repeat all night. Even on the nights I get what should be a full night’s sleep, I’m still waking up throughout the night.
No matter how much I sleep, I never wake up feeling rested. I’m exhausted every single day. It’s not just being sleepy. It’s a deep, whole-body exhaustion that feels like it’s in my bones. I have no energy, and even small amounts of activity can make me feel worse afterward.

What’s weird is that even though I’m exhausted all day, it’s still incredibly hard for me to fall asleep. I can barely nap during the day even when I feel like I desperately need one. Falling asleep is difficult, staying asleep is difficult, and it feels like I never get deep, restorative sleep.

I’ve tried sleeping on the couch, sleeping in my bed, avoiding my phone before bed, warm baths, stretching, good sleep hygiene, and sleep medications. Nothing has made a difference.

I’ve tried clonidine and trazodone, and neither helped. It feels like every doctor immediately prescribes another sleep medication instead of trying to figure out why this is happening.

I wear both a smartwatch and a smart ring, and they consistently show around 10-11% REM sleep and about 10% deep sleep, with the rest being light sleep. I know they aren’t perfect, but they’ve both shown the same pattern for months.
I don’t snore, I’ve never been told I stop breathing in my sleep, and I don’t wake up gasping for air. I do get an uncomfortable urge to move my legs at night sometimes, but my iron levels are normal, so I don’t think it’s related to iron deficiency.
Along with the sleep issues, over the past year I’ve also developed brain fog, chronic fatigue, joint and bone pain, hair loss, temperature regulation problems, sinus tachycardia, possible POTS that I’m currently being worked up for, dizziness, lightheadedness, GI issues, and positive autoimmune blood work. My rheumatologist told me they think I’m in the beginning stages of lupus, but I don’t meet the criteria for a formal diagnosis yet, so they’re continuing to monitor me.

I’m also in the process of tapering off my SNRI in case it’s contributing, but these sleep problems started long before I began tapering.

I’m honestly just tired of feeling tired all the time. It feels like my body never gets restorative sleep no matter how long I’m in bed. I feel the exhaustion in my bones. It’s always there no matter what I do or how much or how little sleep I get.
The only place I’ve ever consistently slept well was during a two-week psychiatric hospitalization. Outside of that environment, I’ve never been able to get consistently restful sleep.

Has anyone experienced something similar or eventually figured out what was causing it? Does this sound like it could be related to POTS, early lupus/autoimmune disease, another sleep disorder, or something else I should ask my doctors about? I’m open to any ideas because I feel like I’m running out of answers. I just want someone to help me figure out the underlying cause instead of giving me another medication that doesn’t work.

Has anyone experienced something like this or have any ideas what could be causing it?

For the past year my sleep has completely changed. From what I’ve read, my situation doesn’t seem to fit what most people describe because I can get 6+ hours of sleep sometimes. The problem is it’s almost never continuous. I’ll sleep for 2 to 3 hours, wake up, eventually fall back asleep, wake up again, and repeat all night. Even on the nights I get a full night’s sleep, I’m still waking up throughout the night.

No matter how much I sleep, I never wake up feeling rested. I’m exhausted every single day. It’s not just being sleepy. It’s this deep, whole body exhaustion that feels like it’s in my bones. I have no energy, and even small amounts of activity can make me feel worse afterward.

What’s weird is that even though I’m exhausted all day, it’s still incredibly hard for me to fall asleep. I can barely nap during the day even when I feel like I desperately need one. Falling asleep is difficult, staying asleep is difficult, and it feels like I never get deep, restorative sleep.

I’ve tried sleeping on the couch, sleeping in my bed, avoiding my phone before bed, warm baths, stretching, and sleep medications. Nothing has made a difference.
I wear both a watch and a ring, and they consistently show around 10 to 11% REM sleep and about 10% deep sleep, with the rest being light sleep. I know they aren’t perfect, but they’ve both shown the same trend for months.
I don’t snore, I’ve never been told I stop breathing in my sleep, and I don’t wake up gasping. I also get an uncomfortable urge to move my legs at night sometimes. My iron levels have been normal, so I don’t think it’s related to iron deficiency.

Along with the sleep issues, over the past year I’ve also developed brain fog, chronic fatigue, joint and bone pain, hair loss, temperature regulation problems, sinus tachycardia, possible POTS that I’m currently being worked up for, dizziness and lightheadedness, GI issues, and positive autoimmune blood work. My rheumatologist told me they think I’m in the beginning stages of lupus, but I don’t meet the criteria for a formal diagnosis yet, so they’re continuing to monitor me. I’m also in the process of coming off my SNRI in case that’s contributing.

I’m honestly just tired of feeling tired all the time. It feels like my body never gets restorative sleep no matter how long I’m in bed. I feel the tiredness in my bones. It’s always there no matter what I do or how much or how little sleep I get.

Has anyone experienced something similar or eventually figured out what was causing it? I’m open to any ideas because I feel like I’m running out of answers.

It feels like every doctor jumps to sleep meds like clondine and trazadone (both don’t work lollll)

I’m a 22F with POTS and endo, and I’m currently being worked up for other health issues (possibly lupus). I’m essentially bedbound and take an SNRI daily.

Yesterday morning around 9 a.m. I took 0.3 mg of clonidine (three 0.1 mg tablets), which is the dose my psychiatrist prescribed and told me I could take for my insomnia. Later that night my heart rate dropped into the low 50s and even hit 45 bpm at one point. My resting heart rate has mostly been around 50–54 bpm since then. My typical resting is between 85-100. Usually staying past 90. I felt really nauseous, weak, and just generally awful. My blood pressure has stayed on the lower side but still within a normal range throughout this. Today, more than 24 hours later, my resting heart rate is still around 54 while lying down, and my blood pressure is about 101/63. I haven’t taken my SNRI for the day because I don’t know what’s going on.

One thing that’s really strange is that I normally feel like I’m having a 24/7 hot flash. I’m constantly burning up and haven’t actually felt cold in months. Since this happened, I actually feel normal or even cold, which is very unusual for me.

Another weird thing is that I normally have pretty constant pain from my illnesses and what my doctors think is lupus/autoimmune disease. My baseline pain is usually around a 7/10, but since this started it’s probably closer to a 4/10. It honestly feels nice not having my heart racing all the time or constantly feeling overheated, but it almost feels like those symptoms have been replaced with a completely different set of problems instead.

I also haven’t been able to eat because of severe nausea. I’ve only managed a few bites of food over the past couple of days, although I’ve been able to drink chocolate protein shakes/milk. Oddly, after drinking one, my heart rate spikes while my oxygen saturation drops, but I actually feel like I can breathe better. Then, after a while, my heart rate drops back down, my oxygen goes back up, and I start feeling like it’s harder to breathe again. I have no idea if those things are related.
It’s now been over 24 hours since I took the clonidine, so I expected it to have worn off by now, but I’m still having these issues.

On top of that, my arms ache and feel sore, and when I lie on my side, my ribs/chest hurt. I always have some chest pain because of my health issues, but this feels different.
Has anyone with POTS or anyone who’s taken clonidine experienced something like this? Did your heart rate stay low for over a day? I have a cardiologist appointment on the 8th, but I’d really appreciate hearing if anyone has had a similar experience because this has honestly been weird. I’ve also never had not being able to eat do this to me. I usually stay the same just nauseous and cranky.

Has anyone dealt with this before? I could really use some advice.

I have an Allianz travel insurance policy through American Airlines. My trip is next month, but over the past several months my health has gotten much worse. I’m currently being evaluated for an autoimmune disease and possible POTS, and I’m dealing with severe fatigue, dizziness, weakness, and other symptoms that make me feel like I can’t travel safely.

The problem is that Allianz says I need a doctor’s note stating I’m medically unable to travel in order to qualify for a refund. I don’t have a primary care doctor, and my appointments with my specialists aren’t until after my trip. I’ve already seen them before, but I don’t know if they’ll complete the paperwork without another appointment.

I’m also under a lot of financial stress because of my medical expenses, so losing the money from this trip would be really difficult.

Has anyone been in a similar situation? Were you able to get the required documentation from a specialist, urgent care, or telehealth provider? Any advice on what worked for you would be greatly appreciated. Thank you!