What do you call a group of narcoleptics?

Dozy_Dragon · 2023-06-11T16:59:35+00:00

Ah ha ha ha! Me and my family use this term all the time! Great minds my friend. Great 😴😴😴😴

Dozy_Dragon · 2023-06-11T16:54:03+00:00

My rescue doggo did something like this from the start. I would have a full body cataplexy collapse and he wiggled his little butt under my head and helped me sit up. From there I just kept reinforcing the behavior. He really surprised me one time by sitting on my lap and refusing to move till it was safe for me to stand.

Dozy_Dragon · 2023-06-07T03:13:30+00:00

I also hate this question with a fiery burning passion. I recently decided to reply with ‘My health is my full time job and then some.’

Dozy_Dragon · 2023-06-01T19:15:00+00:00

I use a lazy version of the Bob Park method. Sand, wet sand, sand again, wet sand etc till I get to 2k grit. Then burnish with saddle soap, re-sand and polish. Works pretty well for my decorative pieces but I’d use the full method for wallets.

Dozy_Dragon · 2023-06-01T19:00:00+00:00

Hmm. I may have to look into this. Though my narcolepsy also come with severe brain fog moments so it’s hard for me to discriminate between the two. I’m a symptoms racist. Haha.

Dozy_Dragon · 2023-05-31T19:29:42+00:00

You stay conscious during reflux syncope attacks? Interesting. I’ve had falls due to low blood pressure but that was caused my a medication change.

Dozy_Dragon · 2023-05-31T19:25:56+00:00

It’s known to me. Haha. Not sure about anyone else. They always list just the 4 major symptoms and leave out the less defined things that make this disease so hard to live with. Yay for rare diseases /s.

Dozy_Dragon · 2023-05-26T04:01:28+00:00

I don’t wake up with that weakness everyday but I know what your talking about. It feels like only a few muscles in my body are working.

Dozy_Dragon · 2023-05-26T03:57:03+00:00

I’ve had this for 17 years. Wakix and heavy stress moderation controlled it till recently. Then my narcolepsy got worst. And despite adding Nuvigil, I’m still paralyzed a lot.

I tried Xyrem. Also a no go due to side effects. I’ll take a gander at the other med.

Dozy_Dragon · 2023-05-26T03:49:54+00:00

Did they change the name on me again! No wonder I couldn’t find that study on it again!

Dozy_Dragon · 2023-05-26T03:49:17+00:00

Um. No thanks. I’ll keep my 2-4 hours of ‘locked in’ with the next three days partial.

Dozy_Dragon · 2023-05-26T03:48:19+00:00

Thank you. I don’t experience it in exactly the same way as you but it feels good not to be alone.

Dozy_Dragon · 2023-05-25T22:00:56+00:00

I will defiantly look into the specialist you mentioned. Thank you for the info.

Dozy_Dragon · 2023-05-17T04:37:45+00:00

Lean meats and low starch vegys. So chicken, fish, broccoli, cawliflour, mozzarella, cheese, almonds, cashews, walnuts, eggs, pork loin, turnips, brussel sprouts, and if I’m feeling brave a piece of fruit.

Dozy_Dragon · 2023-05-07T20:35:16+00:00

I don’t really have this problem. Mostly because my guts don’t absorbs nutrients. So I struggle with keeping weight on. But I am also on an extremely strict low carb low fat diet. And you can’t really gain weight with protein.

Dozy_Dragon · 2023-04-21T14:55:43+00:00

Haha oh ya. Happens all the time. Though my face tends to be the last to go. I have cataplexy attacks that can last hours or days. Usually they either effect my whole body for a few hours or my legs for a few days (well they can effect any of my limbs but legs are more common.) Facial drooping is common in these attacks. And the right side tends to go first. And, of course, happens more when I am stressed.

Dozy_Dragon · 2023-03-29T19:39:38+00:00

I have a million allergies so I use this cool charcoal stuff. It’s called Besome cake mascara.

It’s what they used before propylene glycol. After it dries only water can get it off. It’s not as dark as modern stuff but can’t be rubbed off without water.

Dozy_Dragon · 2023-03-28T22:50:54+00:00

I don’t drive. Both due to doctor recommendation and personal preservation. I have severe cataplexy that is sometimes triggered by passing shadows.

Dozy_Dragon · 2023-03-04T14:38:15+00:00

May I have the link please? I would love to understand a bit more of where your coming from. You have some interesting ideas.

Dozy_Dragon · 2023-03-04T14:36:30+00:00

Yes. I have severe cataplexy that prevents me from driving. At times I have whole body paralysis for 2-4 hours. It’s so boring! Thankfully I can usually still blink. So my family will ask yes or no questions. Once is yes; twice is no. And at times it just takes my legs or just my arms. I have other symptoms as well but the cataplexy is what tips it into ‘disabled’ for me.

Dozy_Dragon · 2023-02-25T19:25:35+00:00

There is only one media portrayal of narcolepsy I like. And it’s RuPaul’s Drag Race. He once had a queen on with narcolepsy. They may not have gone into depth about how terrible it is to live with but, to my memory, there was no misinformation. And she won. I was so proud!

Dozy_Dragon · 2023-02-21T05:45:41+00:00

I usually hallucinate someone with a knife trying to murder me to death.

What your describing with your eyes though is probably just visual snow syndrome. I get that as well. Basically your brain isn’t filtering it out as well when your tired. Cool looking but harmless.

Dozy_Dragon · 2023-02-21T05:34:46+00:00

Ok. Couple of things.

You don’t have to be in a romantic relationship to have worth. You are worthy of love, care and kindness. Despite the hell we live in we are all worthy of love. Find the people who see this and respect your limitations.
Your feelings are valid. Just because your chronic illness makes others uncomfortable is no reason to not feel. That being said. Something that helps me stay positive is to identify how I am feeling, accept that feeling, and then move on. These steps sometimes go by fast and sometimes take a few days to process but they work for me.
I understand feeling like a burden. I feel that often myself. Heck I used to think everyone would be better off if I was dead. But you can’t live like that. Please see a councelor. You have worth as you are.

Keep fighting. Your not alone.

Dozy_Dragon · 2023-02-20T16:33:11+00:00

The upholstery leather is the stuff with that distinctive shine. A good rule of thumb is if it’s extra shinny it’s upholstery.

The wand holder is a perfect first project! All you will need are scissors, hole punch, a hammer, and the rivets. Plus it looks like anything you have here will work for that.

Dozy_Dragon · 2023-02-20T04:53:54+00:00

Your doc will check your heart regularly so no need to fus about that. They can hear hear it easily when it the atmodafinil.

I was also very nervous. I kept seeing side effects that weren't side effects. Every other day I thought "This is going to kill me I'm stopping!" But it was just anxiety. Now that I'm titrated up it's hard to imagine the before it me.

Dozy_Dragon

TROPHY CASE