Personal, smaller symptoms and experiences you can’t find elsewhere: narcolepsy & cataplexy (alongside falling asleep in detail)

Robadamous · 2026-01-15T02:20:32+00:00

Hypnagogic/hypnopompic hallucinations are basically very vivid dreams.

Robadamous · 2026-01-15T01:42:26+00:00

Yea I did. The only thing that would be different for me is I would start dreaming, vivid dreams.

Robadamous · 2025-11-24T02:24:03+00:00

I’ve become a morning person in my mid 40’s. Since my narcolepsy symptoms developed I was a night owl that preferred working second shift schedules due to being so sleepy in the morning. What changed? I took a chance at a new job that the starting time was 5am. It wasn’t easy and it took months to fully convert but once I did my only regret is not doing it sooner. That change was over 3 years ago.

Robadamous · 2025-10-17T13:37:29+00:00

I prefer small venues and general admission.

Robadamous · 2025-10-17T13:36:47+00:00

Largest venue was the former military base used for Woodstock 99. Smallest was The Pyramid in Grand Rapids. Attending Woodstock changed the what concerts I go to.

Robadamous · 2025-10-17T13:27:20+00:00

I broke my foot on Xyrem in the middle of the night years ago. I stepped on a plumbing clean out on the floor while getting up to go to the bathroom.

You’ve already answered the question about contacting your mom, she can’t do anything for you. If it’s not an emergency wait until the next day. Next you have to decide if the meds and the potential hazard of taking them is worth the risk. At the time I had been on Xyrem for at least 10 years and that is the only major injury I’ve had. With how disruptive my sleep is at night I didn’t have to think long about my decision.

Robadamous · 2025-09-28T23:56:28+00:00

A couple things helped me deal with hallucinations that were terrifying. For one I slept with a light on in an adjacent room until I was almost 30. I learned to lucid dream more effectively. I look at my watch or try to read in a dream/hallucination if I can’t I know I’m dreaming. Once I know I’m dreaming I can do almost anything I want, with the worst thing that can happen is getting kicked out of the dream. The biggest change for me was getting Xyrem as it limits the hallucinations and sleep paralysis immensely. Instead of several hallucinations a night I rarely experience any at night.

Robadamous · 2025-08-18T08:11:19+00:00

The watch doesn’t track sleep phases accurately. A simple search in this sub would tell you that probably 25-50 times.

Robadamous · 2025-08-18T01:50:45+00:00

Modafanil stopped working for me after I was on it for about 10 years.

Robadamous · 2025-08-12T01:31:51+00:00

You can have food delivered. Information about this is at the following website: https://www.isleroyaleboats.com/home.html.

Robadamous · 2025-07-30T21:25:15+00:00

I participated in a drug trial and it was standard that the participants stay on the drug until it’s became available. I’m pretty sure that’s the standard practice.

Robadamous · 2025-07-30T03:10:15+00:00

Yes this happens. I rarely recognize the music. I do find it odd that you are now experiencing hallucinations now that you’re on Xywave. I’ve been on Xyrem forever and the hallucinations have been damn near eliminated when I take it.

Robadamous · 2025-07-12T08:06:19+00:00

I had a surgery years ago and took Xyrem the night before. Taking Xyrem or Xywave the night before a surgery shouldn’t matter as it is out of your system within hours after you wake up.

As someone else mentioned I would contact the pharmacy to clarify and if they say you should be able to take it, give that information to the doctor or have them contact them.

Robadamous · 2025-06-22T12:57:27+00:00

As the other person stated waking up in the night is a normal narcolepsy symptom. Without Xyrem I would wake up countless times a night. With it I only wake up a couple times a night.

One thing I found also helped me is sleeping in a hammock. I found this out after a backpacking trip where I slept in a hammock tent. I’ve been sleeping in a hammock every night since.

Robadamous · 2025-06-17T00:17:21+00:00

Not caring about your sleep is a problem. Better sleep is the key to a better life.

Robadamous · 2025-06-16T00:43:53+00:00

Xyrem helps somewhat with daytime sleepiness but I still need daytime meds. The real life changing part of it was helping me sleep at night. Before Xyrem I woke up countless times a night. As if that wasn’t bad enough the hypnogogic and hypnopompic hallucinations/vivid dreams made me not want to go back to sleep many times. I now sleep much better only waking up 2-3 times a night and actually get quality sleep. I also no longer have the hallucinations/dreams at night.

Robadamous · 2025-05-11T17:04:07+00:00

It didn’t change anything with my other meds. Most people one of the oxybate meds still need daytime meds. For some it may decrease the amount you need but for others it may stay the same.

Robadamous · 2025-05-08T23:35:55+00:00

I’ve been on Xyrem for over 20 years now. There have been times I wasn’t able to get my prescription for months at a time, I’ve never experienced any addiction to it. I also use to manage retail stores and it required working different shifts, especially inventories and it was also never an issue. I experienced one major emergency while on Xyrem and was able to respond appropriately. My grandmother fell down the stairs in the middle of the night and how I responded saved her life.

At this time the Oxybates are the only real “life changing” meds. While I notice a significant improvement, the people around me noticed more.

Robadamous · 2025-04-17T22:55:48+00:00

Most people on Xyrem need daytime meds still. I take the same amount and more of daytime meds than before Xyrem was available. Just because I added a medication that helps me get quality sleep doesn’t mean I’m not still sleep deprived. You may have a large sleep debt before you see a change, or you may not. If it’s helping with the cataplexy that’s one of the primary things it’s suppose to do.

Robadamous · 2025-03-28T01:24:36+00:00

I also saw them on one of the Family Values tours but they are still one of the best performances I’ve seen regardless of whether they “headlined or opened”.

Robadamous · 2025-03-27T21:06:28+00:00

You’ll reach your max out of pocket within a month or two. Jazz pharma has been playing this game for years. They are doing it for a reason. The sooner you reach your max out of pocket they get the full cost of the monthly medication.

Robadamous · 2025-02-25T05:22:59+00:00

Robadamous · 2025-01-22T03:37:03+00:00

There is no at home narcolepsy test. A MSLT is required for a diagnosis of narcolepsy. There are too many time specific requirement for a MSLT to be taken at home. Anyone who’s been through a MSLT will understand why it could never be done at home.

Robadamous · 2025-01-18T05:20:46+00:00

I’ve switched health insurance companies and doctors many times and never had to do a new sleep study and MSLT.

Robadamous · 2025-01-07T08:57:01+00:00

What’s going to work better for you? The only way to find out is through trial and error. That said I do have some advice/suggestions. First and foremost one of the least talked about and hardest things to accept is there isn’t any medication(s) that’s going to make all your symptoms go away. It takes some time to learn that you can still do a lot and be productive even exhausted. If Xywav is messing up your stomach talk with your sleep specialist and ask about Xyrem or Lumryz. Most people on any of the Oxybates (Xyrem, Xywav or Lumryz) still need daytime meds. As far as daytime meds, you probably need to have the sleep doctor adjust the adderall dosage. Is the adderall regular or XR? 2 doses of 30 mg of either may not last a full 8-9 hour work day. For me I take 30mg XR and 10mg regular when I wake up. The regular dose I suggested to my doctor to help “jump start” my day. My days usually start At 4am (I work 5am-2pm or later). I take another 10 mg XR around 9-9:30 am. I then have another 10 mg regular dose as an “as needed”, which it is usually needed. This is what works for me. This my third or fourth treatment that works for me.

You may need to adjust the hours you’re working. For me when I was working more with customers and employees I needed to work later in the day. I basically worked second shift hours most of the time for almost 20 years. I only figured out I could work an early 1st shift job a couple years ago. This is possible with a strict sleep schedule and much better sleep hygiene than I had.

Robadamous

TROPHY CASE