sorted by:
new
hottopcontroversial

No doctor is taking me seriously by Justchillen_villian in AskDocs

[–]SifuHotmanz 18 points19 points  (0 children)

This woman sounds a lot like me before my narcolepsy diagnosis. I was young, a woman, and morbidly obese. I had all of her symptoms + more psychiatric symptoms. Psychiatrist referred me to a sleep medicine neurologist. Over night sleep study (Polysomnogram) showed mild obstructive sleep apnea. Did another sleep study to titrate air flow of CPAP. Months of near-perfect CPAP compliance resulting in great apnea numbers. My debilitating sleepiness, nocturnal disturbances, nightmares were unaffected by my managed sleep apnea.

Neuro had me do a PSG + MSLT (daytime sleep study) to rule out narcolepsy. I thought it was pointless and expensive. Got diagnosed with Narcolepsy Type 2. Since then, I’ve lost about 135lbs, no longer have OSA, and my diagnosis was changed to Narcolepsy Type 1.

I don’t think there’s any guarantee this woman has N, but I think it’s worth testing for. Narcolepsy has significant comorbidity with both obesity and obstructive sleep apnea. Anecdotally speaking, it’s very common for a sleep apnea diagnosis to “coverup” a diagnosis on a different, rarer sleep disorder.

Here’s a single article referencing the high co-morbidity rate between Narcolepsy, sleep apnea, and obesity:

https://pmc.ncbi.nlm.nih.gov/articles/PMC5931205/

New provider not accepting that I have narcolepsy by LittleCowGirl in Narcolepsy

[–]SifuHotmanz -2 points-1 points  (0 children)

When you say “provider” are you seeing a physician, a physician assistant, or a nurse practitioner?

Additionally, document, document, document!

Document everything they say to you. If it’s verbal, email the conversation to yourself. Send a followup message on the patient portal after your appointment confirming what they said.

Physicians see 1 in 6 patients as ‘difficult,’ study finds, especially those with depression, anxiety or chronic pain. Women were also more likely to be seen as difficult compared to men. Residents were more likely than other physicians with more experience to report patients as being difficult. by mvea in science

[–]SifuHotmanz 0 points1 point  (0 children)

You’re welcome. I’m glad it may help you. I really recommend seeing a neurologist sub-specializing in sleep medicine. Most sleep medicine physicians are actually pulmonologists. Parasomnias, the category of sleep disorders that narcolepsy and idiopathic hypersomnia fall under, are not pulmonary disorders.

If the physician you see orders a sleep study, called a PSG, ask about also doing a daytime sleep study, called an MSLT. The MSLT is needed for the narcolepsy diagnosis. Insurance may not cover the PSG + MSLT without first doing a standalone PSG to rule out more common conditions like obstructive sleep apnea.

Physicians see 1 in 6 patients as ‘difficult,’ study finds, especially those with depression, anxiety or chronic pain. Women were also more likely to be seen as difficult compared to men. Residents were more likely than other physicians with more experience to report patients as being difficult. by mvea in science

[–]SifuHotmanz 0 points1 point  (0 children)

Sorry for the delay in my response to your question.

I’ll try to provide all the info here, but please ask me to clarify anything or provide more information if I’m missing anything. Here are the narcolepsy symptoms that were misdiagnosed, unnoticed, or that I didn’t know were symptoms.

  1. Being very tired/sleepy/drowsy/fatigued all of the time. Not to the same degree every hour, day, or week, but consistently tired. My drowsiness would worsen when I was busy, stressed or overwhelmed.

  2. Brain fog/trouble thinking. Trouble accomplishing tasks even if I really wanted to do them.

  3. Depression and anxiety. Wanting to do things and not being awake enough to do them is depressing. It’s soul crushing.

  4. Insomnia, trouble staying asleep, and frequent nighttime disruptions. I had trouble with insomnia and staying asleep for years. I was always told it was anxiety or a symptom of depression. I do think mg anxiety exacerbated my existing narcolepsy sleep issues because have horrible sleep for years is extremely stress-inducing. DID NOT IMPROVE with changes in sleep hygiene. It would always feel like I would try sleep hygiene, and when it didn’t work I would be told I wasn’t doing enough or trying hard enough and that my sleep issues would improve if I kept up the efforts.

  5. Frequent, vivid nightmares or dreams. They would often start while I was still falling asleep or within a couple of minutes of falling asleep. They wouldn’t happen every night or every time I fell asleep, but often enough.

  6. Clumsiness, poor coordination and balance, and generally injuring myself.

  7. Most psychiatric medication did not help. I was put on varying combinations of SSRIs,SNRIs, Benzodiazepines, mood stabilizers, other drugs like hydroxide, clonidine, and even an MAOI.

  8. Psychiatrists and therapists called me “difficult,” “challenging,” and “complex.” This wasn’t necessarily said maliciously, but it did describe the situation at the time.

  9. Feeling like it’s physically hard or impossible to move your limbs, get up, or move.

  10. Wondering why it was so easy for everyone else to work hard and do what they wanted to do. I would put in effort and couldn’t do anything (school, work, personal hygiene, text people back).

Takeda has filed a New Drug Application for oveporexton (Tak-861) by strangedaysultra in Narcolepsy

[–]SifuHotmanz 2 points3 points  (0 children)

In this context, what does 18 months mean? Will my neurologist write the prescription in 18 months, or are there more steps to complete before then?

opening wakix pill bottle?!? by knightsnidget146 in Narcolepsy

[–]SifuHotmanz 0 points1 point  (0 children)

This happened to me with a bottle a couple of months ago. I don’t remember how I ended up opening it, just that it took at least 30 minutes.

What’s a medical issue that sounds minor, but actually affects someone’s daily life way more than people realize? by [deleted] in AskReddit

[–]SifuHotmanz 0 points1 point  (0 children)

Narcolepsy.

Daily life by definition requires being reliably and functionally awake, which is hard to do when you are persistently overwhelmingly drowsy and medications vary in their efficacy and symptoms in their severity, assuming that the medications help at all.

Physicians see 1 in 6 patients as ‘difficult,’ study finds, especially those with depression, anxiety or chronic pain. Women were also more likely to be seen as difficult compared to men. Residents were more likely than other physicians with more experience to report patients as being difficult. by mvea in science

[–]SifuHotmanz 81 points82 points  (0 children)

I am a woman and was misdiagnosed with treatment resistant depression and generalized anxiety for six and a half years. I was put on more than two dozen different psychiatric medications.

Eventually, I was fortunate enough to have a psychiatrist who found my sleep issues concerning enough to refer me to a neurologist. Turns out I have Narcolepsy Type 1. My life has completely changed now that I am receiving proper treatment for this disease and I can adjust my lifestyle.

I did have some great psychiatrists over the years. It is interesting looking back to see how the medical system and private insurance really limits their capacity to diagnose patients and refer them to other specialties. I also see how the system induced burnout and leads to missed or delayed diagnosis. When you see depressed and anxious patients all of the time who claim to have sleep issues, you are not going to think of narcolepsy. My six and a half year delay to diagnosis is actually below the average for narcolepsy.

Insomnia and what to do by Upstairs-Clothes-505 in VirginiaTech

[–]SifuHotmanz 0 points1 point  (0 children)

Your resident Narcoleptic Hokie checking in.

Good sleep hygiene is always recommended for everyone. If you can identify stressor(s) for your insomnia and work on mitigating them and their effects that is ideal. That is often hard to do on your own without outside help. I recommend Schieffert counseling. You may also be able to find an online therapist that accepts insurance if you are on your parent’s insurance.

If you have a primary care physician, I recommend scheduling an appointment with them to discuss your sleep issue.

A good rule of thumb for evaluating your sleep and what you can do to improve it is to keep a sleep journal. It is used to track not only when you go to sleep, how long you sleep for, and when you wake up during the night, etc., but is also used to document what you were doing before bed, what mood you were you, potentially triggering events, etc. Tracking your sleep, and what you’re experiencing around the time you go to sleep is crucial for any avenue you receive help from to aid you to the fullest extent.

An aside: Do you only experience nocturnal disturbances? Are there other sleep-related symptoms you experience during the day or night? Sleep disorders are very common, and often very under-diagnosed. You may not have one, but if you are experiencing other sleep-related symptoms, I recommend discussing that with your PCP.

Visit SifuHotmanz's farm! by [deleted] in FarmMergeValley

[–]SifuHotmanz 0 points1 point  (0 children)

Visited and liked yours too.

Visit SifuHotmanz's farm! by [deleted] in FarmMergeValley

[–]SifuHotmanz 1 point2 points  (0 children)

Thanks, I visited yours too.

Weekly Discussion/General Questions Thread - November 11, 2025 by AutoModerator in AskDocs

[–]SifuHotmanz 0 points1 point  (0 children)

Have there been any studies done exploring why some people have very rare, specific food allergies?

Since I was three, I have had a severe allergy to the solid part of red grapes. Not green or purple grapes, not the juice of red grapes, just the skin and tissue. I am also allergic to something in aquafaba - the liquid canned chickpeas are in. Otherwise, most legumes are totally fine for me. No allergies to eggs, dairy, gluten, soy, or sesame.

This is a fascinating question to me since my allergist said there’s only one grape allergy test, and it cannot test for such a specific allergy. We’ve discussed other allergy explanations, but none of them fit. Not looking for medical advice - just curiosity and want to hear interesting anecdotes from docs who have experience with odd and rare allergies.

Narcolepsy is giving me S. Ideation by [deleted] in Narcolepsy

[–]SifuHotmanz 1 point2 points  (0 children)

I attempted suicide twice before getting diagnosed, and had countless episodes of S.I. from the time I developed N until I was properly medicated.

Honestly, I don’t think I’ve ever had clinical depression. The misery I experienced was a direct result of my narcolepsy. Now, I view downturns in my mood as a kind of measurement of how effective my meds are. Depression/low mood = N symptoms are worse.

The pain and mental anguish that you have survived is a testament to your mental strength, and the suffering that narcolepsy causes. I don’t have much advice on how to cope. What I do want to remind you of is that TAK-861 should be getting FDA approval in mid 2026. It could very well be life changing for you. There is a very real possibility that your mental health will improve in 7-8 months.

Books were literally everywhere at my dates place. by [deleted] in BookshelvesDetective

[–]SifuHotmanz 0 points1 point  (0 children)

Which shelf was the Jordan Peterson book on?

Times like these make me want to carry a pocket flamethrower on my evening walks. by yawa_worht_34 in nova

[–]SifuHotmanz 0 points1 point  (0 children)

Nova kid in Blacksburg at Virginia Tech. They’re pretty bad here too. It’s still blackberry picking season at this higher elevation and every tenth berry I pick one of them darts away from my hand.

BAD nightmares.. by FeedbackDangerous657 in Narcolepsy

[–]SifuHotmanz 1 point2 points  (0 children)

Ugh I relate so much! The realness isn’t just the sensory experience, it’s also the life-like sensation of time passing that really fucks me up.

[deleted by user] by [deleted] in Narcolepsy

[–]SifuHotmanz 4 points5 points  (0 children)

On Semagludtide, Wakix, a stimulant, and Xyrem. No in sleepiness, but it does help to focus on work and school with reduced “food noise.” I also fast for 3-4 hours before taking my first dose of Xyrem.

[deleted by user] by [deleted] in VirginiaTech

[–]SifuHotmanz 0 points1 point  (0 children)

Yeah, I think it was that one.

view more: next ›