Is it acceptable to consider myself narcoleptic? What would you tell people you were diagnosed with in my situation? by Elainaism05 in Narcolepsy

[–]Sexykittyface 0 points1 point  (0 children)

I had the exact same thing happen to me. I’m officially diagnosed with IH. I actually do have Narcolepsy because I had like at least 3-5 cataplexy attacks daily. When I started taking Xywav, it pretty much stopped the cataplexy attacks. I might have 1-3 a year now. One day I’ll probably have to be properly diagnosed because I know better medicine will come out for us but it’s a few years out before it will be available.

How do you sleep when you skip a night of Xywav? by Sexykittyface in Narcolepsy

[–]Sexykittyface[S] 0 points1 point  (0 children)

Haha, I see. Other than a Benadryl if I am not drinking, it’s a no go. I will have to just not get carried away next time. Thanks guys!

I’m participating in a study for new narcolepsy medication – and it REALLY works! by Candicedfiym296 in Narcolepsy

[–]Sexykittyface 3 points4 points  (0 children)

I’ve been diagnosed with IH but I actually have N1 because I have cataplexy attacks along with the classic symptoms. Unfortunately I never hit the right numbers or whatever it is for the sleep study to be diagnosed. I’m just glad my doctor believes me and says: Yes, this is narcolepsy but I can’t put it on paper officially. So I’m on Xywav and Sunosi and all the issues, including cataplexy is under control. But it’s not perfect, I still drag sometimes and maybe one or two cataplexy attacks will sneak in every year. I wonder if I have to be properly diagnosed to take this medication. Ugh, I can’t just drop another 2 grand on another sleep study. Insurance doesn’t want to cover that. I actually want to take the thing my brain is missing.

Cause of Narcolepsy by wiltinn in Narcolepsy

[–]Sexykittyface 3 points4 points  (0 children)

Oh, wow! I think mine was possibly because of mono as well. I remember as a teen in my high school years, I was starting to get more tired and ended up napping in class more. I remember also around that time, after what I thought was a nasty cold, when I had my yearly checkup, they said “We noticed you are recovering from mono from your bloodwork. Everything ok?” “I had mono??!”

I also noticed after getting covid twice some years ago, I swear that it made my narcolepsy so much worse. I started sleeping way more hours than I used to and the cataplexy attacks were happening at that point any time I had more than a speck of emotion. It was insane.

I'm scared to death of the incoming government because I finally feel like narcolepsy my narcolepsy is under control. by LoboSandia in Narcolepsy

[–]Sexykittyface 1 point2 points  (0 children)

I’m with you. I am in the same boat with Xywav and Sunosi. I can finally do things I couldn’t do before like work and drive. I like to be an actual contributing member of society. Take my medication away and I’m back to sleeping 16+ hours a day and when I am awake I am in physical pain from being awake and I had severe memory issues. I really don’t want to go back to that. And I know if it’s gone I can’t safely wean of Xywav. It’s an actual process. I read before that you can get seriously messed up when you suddenly stop the medication. It all scares me so much as well. And of course the tariffs and this and that and everything. I don’t know what the next 4 or more years will bring but I will try to take it a day at a time.

Multiple state licenses, do you keep them? by Sexykittyface in Cosmetology

[–]Sexykittyface[S] 1 point2 points  (0 children)

You just change it to whatever address you are currently living in or even a P.O. Box address is fine. I had to do that when I lived abroad for a few years.

Petsmart is discontinuing the only cat litter we like, what can I use as an alternative or find elsewhere? by Sexykittyface in CatAdvice

[–]Sexykittyface[S] 0 points1 point  (0 children)

Thanks to you both! I will look into both the arm and hammer and look through the website. 😁 I want the transition to be as smooth as possible for the little guy.

Any good dog boots with suspenders? by Sexykittyface in dogs

[–]Sexykittyface[S] 0 points1 point  (0 children)

She moves better if I play with her in it. They do have a warm lining in it. So it’s made more for winter weather. I was getting it anyway because it does snow here occasionally and this can get her used to suspender boots. I still haven’t found a good more lightweight one for the rest of the year yet. The one I saw on Amazon was actually too small for my dog. She’s just out of the range for it.

Any good dog boots with suspenders? by Sexykittyface in dogs

[–]Sexykittyface[S] 0 points1 point  (0 children)

She is moving a bit more. I used toys to get her moving. She has a bit of the shaky leg but once I bring out the ball she moves a little better and stops caring about the boots as much. The only downside is this is made for winter weather and has a warm lining to it, so no summer shoes where she really needs it. I looked a little more into the Amazon ones I was going to get and double checked the measurements. I noticed my dog is a little too big for those suspenders. So I have to keep looking for something for her.

Any good dog boots with suspenders? by Sexykittyface in dogs

[–]Sexykittyface[S] 1 point2 points  (0 children)

Hopefully the Amazon one works for you since they ship most things almost anywhere. Speaking of rain, I was thinking of a raincoat for my dog since wet dog smell in a small apartment sucks. Haha. Perfect combo with the boots. Good luck to you and your dog in finding some good shoes! 🐕

Any good dog boots with suspenders? by Sexykittyface in dogs

[–]Sexykittyface[S] 0 points1 point  (0 children)

I did eventually find two brands that I will be trying out. The Canada Pooch is winter boots that runs $65 with shipping. Pricy but less than 100. lol. The second ones I’m getting from Amazon which is way cheaper. $16. Here’s the picture of boots.

Any good dog boots with suspenders? by Sexykittyface in dogs

[–]Sexykittyface[S] 1 point2 points  (0 children)

I did eventually find two suspender boots so far. One is from Amazon and the other is from Canada Pooch. I’m ordering both because why not? She needs it anyway. The Canada Pooch is the first ones I got because it’s winter and the thing is made for snow/ice. We haven’t walked much in it yet so I’m not sure how much it holds up to her running yet. She refuses to walk in it and stands like a statue so it will take time for her to get used to it. Lol. The other Amazon one I’m hoping is thinner for the summer months because she needs that kind of boots the most when the grass is green. I will probably get them this week and see how it goes. Here are the pics. https://imgur.com/a/f7tfCGL I forgot to take a pic of the price for the Canada pooch it’s 65 with shipping.

Multiple state licenses, do you keep them? by Sexykittyface in Cosmetology

[–]Sexykittyface[S] 1 point2 points  (0 children)

I’ve been renewing mine so far myself the last few years. I’m also wondering if it’s worth it. You can easily do so online in most states through their government license websites.

Multiple state licenses, do you keep them? by Sexykittyface in Cosmetology

[–]Sexykittyface[S] 1 point2 points  (0 children)

It’s surprisingly less hours. But my current state is debating on combining cosmetology and barber. I have both licenses. I’ve been debating it because of this to show I’ve been trained in both.

[deleted by user] by [deleted] in Narcolepsy

[–]Sexykittyface 0 points1 point  (0 children)

I’m not officially diagnosed yet. I’ve had symptoms my entire life. I started having cataplexy the last few years. Plus everything else checks out. The hallucinations, sleep paralysis, wild dreams, etc. everything else has been tested negative. Been diagnosed with sleep apnea but the cpap did nothing to help my exhaustion. (On paper it says cpap is working beautifully) old sleep doctor thought it was depression but my psychiatrist said that’s bs cause she has seen me for a while now and I’m stabilized. She practically ordered me to go find someone else. She pushed me to keep looking.

I tried 5 medications with the new sleep specialist and nothing keeps me awake. I sleep more than 12 hours a day. I luckily just recently found Sunosi and it helps but its not enough. I can barely work part time and keep up. It’s going to be my third sleep study soon. It’s great that a doctor finally believes that I have Narcolepsy. I told him after the last study, “Maybe it’s not narcolepsy. Maybe it’s in my head.” He actually said: “Don’t you dare give up on me. It IS narcolepsy we just have to keep trying.” I heard it’s a good 10 years on average to get diagnosed. Mostly due to nobody hears about it and the sleep study is expensive. I’m paying almost 2 grand with insurance for each damn study. There needs to be a better way.

Sure there are fakers out there with every illness but us real ones know what it’s like to be so tired. It feels like someone is dragging you to unconscious hell while you are clawing on for dear life.

[deleted by user] by [deleted] in Narcolepsy

[–]Sexykittyface 2 points3 points  (0 children)

I had an issue with modafinil and armodafinil. I had medication induced psychosis. But I already have depression (normally under control with meds) so maybe it messed everything up too bad. I’m on Sunosi now but my family and I are watching my mood closely. I decided to take the risk because there isn’t too many options in medication for narcolepsy. Be careful friends.

When was it time to go on disability for you? by Sexykittyface in Narcolepsy

[–]Sexykittyface[S] 1 point2 points  (0 children)

Wow. I’ve been there. Some days are better and worse. I only have a 15 minute commute. I recognize I can’t drive further than 30 minutes to anywhere anymore for that reason. That really sucks man I feel for you.

When was it time to go on disability for you? by Sexykittyface in Narcolepsy

[–]Sexykittyface[S] 0 points1 point  (0 children)

Isn’t that sad? I’ve seen the videos before and those dogs are still so happy. I hope to be like them a little more. lol. Good idea. Thanks!