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I am new to this is everyone diagnosised by sleep study Dr's? They have really only prescribed me medication and have not given me a whole lot of advice or direction on what or where my journey is going or how to track progress even.

January 23
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A MyNarcolepsyTeam Member

Actually, you probably need a Sleep Medicine Specialist. They specialize in this extraordinary condition. I have other medical issues. However, Narcolepsy is at the very top, of the list.

February 3
A MyNarcolepsyTeam Member

When you have your appointment, tell the Dr to explain everything to you in layman's words, not textbook. Ask him what the course of action is. Just keep asking him questions. Make him/her work for their money. Far too often Drs will hurry through an exam not explaining what the diagnosis is from test results. Write down all your questions and concerns. Do not let them shove you aside or intimidate you. Remember, you & your insurance is paying the bill. They have no right to treat you like a peon. Let us know the outcome. Sending hugs for healing.

February 3
A MyNarcolepsyTeam Member

Exactly!!!!

February 3
MyNarcolepsyTeam

What questions should you ask at your appointment when medications haven't helped, and how can you better understand your narcolepsy journey?

It's completely understandable to feel uncertain when treatments aren't working and you're not getting clear guidance. Here are important questions to ask your doctor today:

About Show Full Answer

What questions should you ask at your appointment when medications haven't helped, and how can you better understand your narcolepsy journey?

It's completely understandable to feel uncertain when treatments aren't working and you're not getting clear guidance. Here are important questions to ask your doctor today:

About Your Medications:
- Why haven't these medications worked for me?
- Are there other medication options we can try?
- What side effects should I watch for with any new treatments?
- How long should I expect before seeing improvement?

About Tracking Progress:
- Should I keep a sleep diary to track my symptoms?
- What specific symptoms should I be monitoring?
- How often should we reassess whether treatment is working?

About Your Overall Care:
- What lifestyle changes might help alongside medication?
- Should I be taking scheduled naps, and if so, when?
- Are there sleep hygiene practices that could improve my nighttime sleep?
- What should my treatment goals be? Regarding Diagnosis:

Yes, most people with narcolepsy are diagnosed through sleep studies. A typical diagnostic process includes:

- Polysomnography (overnight sleep study) that monitors your brain waves, breathing, heart rate, and other markers while you sleep
- Multiple Sleep Latency Test (MSLT), also called a daytime nap study, which measures how quickly you fall asleep during the day

Your doctor should also review your medical history, lifestyle factors, and may order blood tests to rule out other conditions.

If you haven't had these tests yet, ask your doctor whether they're needed to confirm your diagnosis or if additional testing might help guide your treatment plan.

January 23

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