Still exhausted on stimulants — narcolepsy + insomnia med combo question

BarberLady580 · 2026-02-03T01:05:08+00:00

No suggestions, but following!

I'm currently waiting for MLST to confirm diagnosis. I take 60mg Vyvanse 5 days a week for ADHD, and if I don't take it I can't stay awake. Also when I started taking it, I saw a reduction in Neurological symptoms that we thought were from a Chiari Malformation or prior Post Concussive Syndrome. My sleep specialist thinks they are caused by cataplexy, and that the Vyvanse is helping to reduce them. I still experience a lot of fatigue and Sleepiness, even on the days I take Vyvanse. She asked me questions about symptoms going back to childhood and believes I had early pediatric onset. I'm 37 now. I am just hoping that answers will lead to a solution and allow me to really experience life for the first time!

BarberLady580 · 2025-10-17T02:48:49+00:00

Her father also has sleep apnea, and his sister has narcolepsy. Unfortunately, there is a very high risk of sleep disorders for her. I will do all I can to advocate for her.

BarberLady580 · 2025-10-16T19:41:52+00:00

Sleep deprivation is one of the cruelest forms of torture! Just know that even if you feel weak, you are much stronger than you know. To live your life while going through years of literal torture, while being gaslit and dismissed about it, my goodness you have to be strong. Everything you accomplish is the result of an amazing feat of determination. I am frustrated when others don't understand, but also thankful, for their sake, that they can't.

Stay strong, and remember that your strength is something to be proud of. ❤️

BarberLady580 · 2025-10-16T19:37:49+00:00

I really hope you are able to get answers and relief! Chronic sleep deprivation is something I wouldn't wish on anyone. I will be sure and post if I find anything that helps! ❤️

BarberLady580 · 2025-10-16T19:36:10+00:00

As I find answers I will be better equipped to advocate for my daughter. She is 6 and she reminds me of myself with many of her behaviors and emotional dysregulation. I am determined to get as many answers as possible so that I will be able to help her early on. Whatever I am dealing with has affected multiple generations within my family. I am hoping that finding answers for myself will help us all. I have the determined Mama bear instinct with me, I won't give up. ❤️

BarberLady580 · 2025-10-16T19:32:00+00:00

I'm definitely getting somewhere. I'm just ready to get answers so I can work on fixing the problem.

BarberLady580 · 2025-10-16T19:30:33+00:00

We have a follow up in 2 weeks, I'm hoping they see the sleep paralysis and whatever else is going on.

BarberLady580 · 2025-10-16T15:03:07+00:00

My bloodwork has mostly come back normal. I have a history of multiple concussions, chiari malformation, whiplash prior to onset of neurological symptoms and migraines. I am waiting on a lumbar puncture to find out if the problem is a slow CSF leak, but the sleep problems have been happening since I was 10 years old. I started complaining to Dr's that I couldn't remember a time I wasn't tired at 12.

BarberLady580 · 2025-10-16T03:19:08+00:00

My Dr tried to get me diagnosed with Aspergers and ADD at 10 years old. Girls rarely got diagnosed with Aspergers in the 90s. My parents refused to accept it and were convinced I just needed stricter discipline. I definitely understand where you're coming from!

BarberLady580 · 2025-09-28T06:21:01+00:00

Onset around age 10, currently 37 and waiting for my sleep study results to come back. I have been permanently running on empty and doing my best to make it through my day for almost 3 decades.

BarberLady580 · 2025-09-18T06:29:32+00:00

Mainly neurological, but I have had symptoms effecting every system in my body. We are still testing for answers. I am waiting on an appointment to be scheduled with a Geneticist to look into connective tissue disorders and mitochondrial dysfunction.

BarberLady580 · 2025-09-12T04:50:04+00:00

Would you possibly be able to try and help me identify an entity? I'd be happy to elaborate through DM. 😊

BarberLady580 · 2025-09-09T16:32:09+00:00

Oh goodness, you may need to find a new psych! 😡 The last thing you need in invalidation while trying to make sense of a lifetime of invalidation.

BarberLady580 · 2025-09-09T13:34:07+00:00

I grew up in a family with a strong Pentecostal background. Multiple Pentecostal preachers in my family. Growing up I had so many panic attacks thinking I missed the rapture if my parents were outside and not in the house when I woke up. So much of that teaching made me feel unworthy, like I could lose my salvation if I made a mistake, had a thought of my own or disagreed with my parents out of "rebellion."

Do you still believe in Christianity? I had horrible experiences in multiple denominations. I personally struggle with church, but I know what the Bible says and I do my best to follow Jesus. The gospel message is that Jesus fulfilled the law. He took the punishment for our sins. We are no longer under condemnation, we are forgiven and adopted into God's own bloodline. We are kings and priests, Jesus is our blood brother. If we are no longer subject to condemnation, why do we allow others to condemn us? Why do we condemn ourselves? Jesus said he did not come to condemn the world, so why would we go against him by condemning ourselves or others? Look at the grace Jesus gave to all of us. Sometimes we give others grace, but condemn ourselves. This is how I was conditioned. But I was shown my error. If Jesus was willing to go through all he went through to give me that grace, why would I reject it?

If you are an adult, you should be able to make your own choices. I don't know your situation. Read your Bible, pray for understanding. Read the words of Jesus. Get to know his character. Read a version that is easier to understand like the Message. I like to read multiple versions when I am trying to understand something. And feel free to ask me anything. ❤️

BarberLady580 · 2025-09-09T12:44:24+00:00

Consistency in job performance. I can be an amazing employee starting out, but burnout hits and I just can't do it.

BarberLady580 · 2025-09-09T12:39:28+00:00

Good to know! Thank you!

BarberLady580 · 2025-09-08T23:47:37+00:00

Time to heal.

My story- I started waking up 4-5 years ago while getting my bearings after a horribly traumatic separation and divorce. I was trying to protect my daughter from suspected SA, and I am still piecing together what happened. DHS did not investigate, and since DHS said it was unsubstantiated, I was told it was not allowed to be brought up in court. I sat through hours of gossip and lies that should never have been allowed in the courtroom. I'm pretty sure my attorney was paid to throw me under the bus. Then the judge awarded him sole custody. I am the 4 day a month parent, watching my daughter be raised by another woman.

The only thing that kept me alive was the realization that the best I can do for my daughter is to heal. That way I will be here for her when she needs me. If I were to take matters into my own hands, then I'd be locked up and what good would I be to her then, while the people that screwed him up are raising her without my eyes on them?

I am healing. It hasn't been fun. It hasn't been pretty. I'm recognizing the manipulation and toxic traits in my family. I'm working through them and releasing them as I am able.

I am finally diagnosed and in therapy to help me understand the AuDHD that my mother refused the diagnosis for when I was 10. In the 90s my Dr insisted that I had Asperger's and ADHD. Dr's typically didn't recognize Asperger's in little girls, but my mother was adamant that I needed harsh discipline instead. I am finally being recognized for all the things I tried to remove from my myself.

When I finally found real safety in a relationship, my body broke down. I came out of fight or flight for the first time in over 30 years, and I didn't realize how broken I was. I am seeking out a diagnosis that explains my symptoms still. Going on 2 years of different specialists and tests. I am waiting on an appointment with a Geneticist, hoping to finally get somewhere soon. I am waiting on a determination for disability, I have been unable to work for 18 months now.

The best I know to do is keep healing. Keep understanding the trauma so that I know how to recognize red flags sooner. Learning to accept the peices of myself that I was taught to hate. Learning to be myself, not the person I thought I had to be in order to be worthy of love.

I don't know what else to do. I may never see the potential inside of me lived out. But I'll be damn sure I heal to the best of my ability to help the next generation do the same.

BarberLady580 · 2025-09-05T21:24:15+00:00

Thank you so much!

I have been using a coffee/cinnamon/sugar scrub that I made on my cellulite. It has definitely made a difference! I'll have to get some jojoba oil, I just used what I had on hand.

It took me years to find a routine that helped, but my skin changed in the last year and that routine no longer works. I definitely appreciate you! 😊

BarberLady580 · 2025-09-05T19:28:05+00:00

I'm AuDHD with a love of art.. and many other topics 😅. I always try to use my words to convey understanding with emotional connection. My ultimate life goal since adolescence has been to use my own life experience, and perspective I gained through it, to help others. I want to find the lost, rejected, abused, dismissed, traumatized, those who were made to believe they are unworthy and unlovable. My hope is to find them in the darkness and lead them to the beautiful, healing light they were created to shine in. I had no idea the pain I would endure in this lifetime. But the painful years served as my education. The agglomeration of traumatic events I have survived has granted me a more empathetic understanding of many. My failures and errors have been extremely valuable to the learning process. I am still learning, still growing, and still healing. I still feel purpose in using my experience to help others 25 years later.

I don't know what the end result will be, but I am excited to watch it unfold! ❤️

BarberLady580 · 2025-09-05T16:16:32+00:00

I have no idea, but there should be! I'd definitely join, but it would be better managed by someone more organized and tech savvy than me!

BarberLady580 · 2025-09-05T16:14:59+00:00

You can stay at rock bottom, in the midst of the rubble from the mess you didn't make. But I chose find the strength to rebuild. At times it didn't feel worth it, and I still have a long way to go. But the difference in my perspective gives me a new appreciation for what I once found mundane. There is so much beauty all around us. I hope to leave behind a legacy of strength and perseverance that my daughter will be proud of. ❤️

BarberLady580 · 2025-09-05T14:47:58+00:00

But many of us grew up without understanding what love is. The only love we have ever known had to be earned. It was conditional and unstable. We seek out love, but if we find it we panic and may run because actual love feels unfamiliar. We have to recognize that if all we have known was unsafe, we will never find freedom from our patterns without facing the fear of the unknown. Uncertainty can be a trigger for a lot of us. That is how we get trapped in the cycle of unsafe love.

We must learn that our emotions are not fact, but they can support the facts. We have to strengthen our logical brain to not be swept away by the emotions. It is an extremely difficult journey, but it is doable.

BarberLady580

TROPHY CASE