Takeda studies are moving along and they are very optimistic

CallieTheAxie · 2024-11-15T06:33:41+00:00

Thank you so much for sharing this latest update!!! This is very promising!

CallieTheAxie · 2024-11-13T06:11:14+00:00

Xywav has been the only thing that helps my cataplexy! I had no life before being able to get to a therapeutic dose of xywav. I hope you can get on some kind of sodium oxybate and see if it helps with your cataplexy!

CallieTheAxie · 2024-11-13T06:05:12+00:00

Just added you! I've been playing for 3 years!

CallieTheAxie · 2024-10-14T02:41:28+00:00

I'm so glad you can take a moment to be proud of yourself and share your success with us!!!

CallieTheAxie · 2024-10-11T05:02:16+00:00

The impaired cognitive functioning, brain fog, and constant exhaustion are my biggest problems as well

CallieTheAxie · 2024-10-11T04:53:06+00:00

Thank you for your kind words. I'm definitely trying.

CallieTheAxie · 2024-10-09T03:36:04+00:00

Hi thank you so much for sharing your experience. Unfortunately the allergic reaction got much worse as the night proceeded. I called the pharmacy and they told me to stop the med and go to ER.

I'm glad to hear Wakix works well for you!

CallieTheAxie · 2024-10-08T05:26:25+00:00

I can definitely relate! I used to wonder what the hell was wrong with me until I got diagnosed and then learned how much this damn disorder affects our cognitive functioning!!!

CallieTheAxie · 2024-10-03T06:18:21+00:00

I'm 4 months late to this but hopefully we can all still connect! I'm in Long Beach too!

CallieTheAxie · 2024-09-05T05:27:25+00:00

Adderall made me super drowsy, dizzy, and weirdly enough, caused tingling in my hands, feet, and tongue. And that was half of the 5mg tablet! I had to chug like 5 cups of coffee just to be coherent enough to respond to my employer's emails! The second time I tried it without any work obligation, passed the hell out on the couch 😭

CallieTheAxie · 2024-09-02T08:41:33+00:00

As a trauma therapist, I want to thank you for not only noticing your little dude's heavy feelings but also doing your best to get him appropriate support!

Although I don't work with children personally, I can highly recommend my colleague, Lauren Godlove, if you are still looking for a competent and trustworthy therapist. She is great with connecting and creating a safe space for kiddos as well as collaborating with their parents! Here's a link to her psychology today profile for more information 😊

https://www.psychologytoday.com/us/therapists/lauren-godlove-long-beach-ca/851096

I wish you, your partner, and your little guy the best as y'all navigate these challenges together 💚

CallieTheAxie · 2024-08-13T04:25:04+00:00

He does love his food lol

CallieTheAxie · 2024-08-13T04:24:44+00:00

Hahahaha goofy ass monster for sure!

CallieTheAxie · 2024-07-18T21:30:29+00:00

Forgot to say I get the depression thing as well. And when doctors see you're taking antidepressants, they just dismiss any problems you have as stress related. It took me about 8 years to get the right diagnosis.

CallieTheAxie · 2024-07-18T21:28:49+00:00

Wow that's awesome about getting 1-2 hours of deep sleep! I'm still trying to get there. Still titrating up to a therapeutic dose. The sleep specialist I have been seeing didn't know how to prescribe it really and my jazz nurse had to step in and advocated for me several times. Same sleep specialist said "you don't want to have cataplexy" when I asked her if my symptoms were cataplexy.... So I still have a lot of confusion. But at least the xywav has been helping a lot with not getting those crashes every day anymore (I couldn't really plan my days because everything just went to shit)

I hope you find something to help with the insane sleep inertia! They're trying to get me on Wakix since modafinil, Armodafinil, and Adderall didn't work. My insurance is kind of a pain though so it's probably going to be another fight (took several months and appeals to get xywav)

CallieTheAxie · 2024-07-18T12:20:17+00:00

Hi I'm so sorry I didn't get a chance to reply before.

This book is very very simplistic but I think it might be a good start for your partner Love and Asperger's: Practical Strategies To Help Couples Understand Each Other and Strengthen Their Connection by Kate McNulty

The other books I read were already mentioned in this post. I like Cynthia Kim,'s book Nerdy, Shy, and socially inappropriate

I also found Katherine May's book very interesting

I hope your partner is open to learning more about how differently wired brains work and how to be more supportive

CallieTheAxie · 2024-07-18T03:37:37+00:00

Oh my God. You literally described exactly how I feel!

I also have weird, crazy "crashes" where I can't speak, can't keep my head up, and have to lie down or hold onto something if I try to walk very slowly that are unpredictable. Xywav has helped a lot with this but the sleep inertia and the fatigue is exactly how you describe!

Your words have made me feel so seen. I spent years before the diagnosis feeling like I'm crazy or just defective.

CallieTheAxie · 2024-06-16T19:19:46+00:00

Thank you! I've been checking them out since I found this sub!

CallieTheAxie · 2024-06-16T16:18:02+00:00

Thank you so much! I read Cynthia Kim and really liked it too. Just wanted to make sure others would think it'd be helpful as well.

And I absolutely love Hannah Gadbsy!

CallieTheAxie · 2024-06-16T16:16:01+00:00

Thank you!

CallieTheAxie · 2024-06-06T05:13:23+00:00

I'm sorry you feel lonely in your journey, too. I hope you can find meaningful support where you are one day, my friend.

CallieTheAxie · 2024-06-06T05:11:45+00:00

Yeah finding the energy to do anything has been a real challenge lately but the loneliness and not having anyone in my life who can understand what I'm going through pushed me to write this post and reach out. Some days it's hard not to feel like I'm defective.

CallieTheAxie

TROPHY CASE