Almost 40, severe sleep problems since age 14 — DSPD, Non-24, or something else? Looking for advice

Hello all.

I’ve had severe sleep problems since I was around 14 years old, and I’m now approaching 40. Over the years, I’ve seen neurologists, primary-care doctors, sleep specialists, and other medical professionals, but I still feel like I have never received a clear explanation or an effective long-term treatment plan.

I’m not asking anyone here to diagnose me. I’m mainly hoping to hear opinions from people who recognize this pattern, along with advice about what type of specialist to seek out, what treatments have helped others, and what questions I should be asking doctors.

The biggest thing I struggle to explain is that my sleep schedule is not simply “late.” My falling-asleep times can vary dramatically, sometimes anywhere from around 3 a.m. to 5 p.m.

Occasionally, if I’m lucky, I’ll get onto what feels like a “normal” schedule. I might fall asleep sometime between 9 p.m. and 1 a.m. and wake between 5 and 10 a.m. I can sometimes maintain that for a little while, possibly even several weeks, but eventually it goes away and my sleep becomes severely delayed and unpredictable again.

Once the schedule breaks, getting back to normal feels almost impossible. That may actually be my biggest problem: not necessarily maintaining a normal schedule once I have one, but getting back to it after it has collapsed. I cannot seem to reliably move my sleep back into place.

Pulling an all-nighter does nothing. Staying awake for an extreme amount of time does not reset me. I may stay awake all night and through the next day, only to sleep at another strange time or get a few hours of sleep and remain completely out of rhythm. Attempts to force a reset often leave me more sleep-deprived without actually fixing the schedule.

I don’t know whether this sounds like severe delayed sleep-wake phase disorder, sighted Non-24, an irregular sleep-wake pattern, or something else. The fact that there is so little consistency is part of why I’m confused.

One of my worst symptoms is severe sleep inertia. When I wake up, I often feel heavily sedated, cognitively impaired, irritable, confused, and barely able to communicate. It does not always pass after 30 minutes or an hour. It can last for most of the day, and on the worst occasions it feels as though I remain impaired for close to 24 hours.

This has severely affected the direction of my life. I have largely structured my life around my sleep disorder. It has limited my ability to maintain employment, make plans, attend appointments, socialize consistently, and be dependable for other people.

It has severely stifled my life, as I’m sure a lot of people here can relate to. I feel like nearly every major decision has had to be made around the possibility that I may be asleep, exhausted, or unable to function at a normal time.

My reset attempts are brutal. Fixed wakeup times and/or staying awake for extended times to shift a "normal" schedule are mostly comprised of 7-10 days of fragmented sleep at varying times that never really gets me to where I want to be.

Some potentially relevant information:

• I have had these problems since adolescence.
• I often sleep around seven to nine hours when I am able to follow whatever schedule my body is currently on.
• My sleep times can vary by many hours from one day to the next.
• I occasionally maintain a normal schedule for several weeks before it collapses again.
• Once it collapses, I may remain severely delayed or chaotic for months.
• Pulling all-nighters has never reliably reset my schedule.
• I have moderate sleep apnea but have struggled to tolerate CPAP.
• Modafinil helped my daytime functioning considerably.
• Zaleplon caused relatively little next-day impairment compared with other medications I have tried.
• I use caffeine and nicotine, although the timing and amounts have not always been consistent.
• My light exposure, activity level, and daily structure have also varied.
• I do not currently have work or school acting as a fixed daily wake-time anchor.
• My sleep inertia is often as debilitating as the sleep timing itself.

I would appreciate advice about any of the following:

1. Does this sound more like severe DSPD, sighted Non-24, an irregular sleep-wake pattern, or something else?
2. Can DSPD produce sleep times that are this unpredictable, rather than simply consistently late?
3. What kind of doctor or clinic is best equipped to evaluate a complicated circadian-rhythm problem?
4. Should I specifically look for a circadian-rhythm specialist rather than a general sleep clinic?
5. What melatonin dosage and timing has helped you? I’m especially interested in whether very low doses worked better than standard doses.
6. Have any sleep medications, wake-promoting medications, or antidepressants helped your sleep timing or sleep inertia?
7. What sleep-hygiene habits actually made a meaningful difference beyond the usual generic advice?
8. Has anyone else had sleep inertia that lasted for many hours or most of the day?
9. Has anyone been able to maintain a normal schedule temporarily, lose it, and then remain severely delayed for months?
10. How do you get back to a normal schedule when all-nighters and forced resets do absolutely nothing?

I understand that medication experiences are highly individual, and I would discuss anything with a doctor rather than treating Reddit as medical advice.

I know that Reddit isn't littered with Doctors giving out medical advice, but thats not what Im looking for. I'm looking to hear from others who have endured similar circumstances and hear how they found ways to improve their life / sleep situation.

Thank you to anyone who took the time to read this. I’ve been dealing with this for most of my life, and I’m just trying to get a better understanding of what is actually happening.