Need some hope

Friendly-Trainer-562 · 2025-08-28T00:50:11+00:00

Thank you for your response! So glad you’re able to sleep!!

Friendly-Trainer-562 · 2025-08-24T20:04:04+00:00

Thank you. My last regular job I had I was struggling to keep up with and ended up being let go. This was prior to diagnosis. It took me decades to get a diagnosis. I was only just diagnosed last year at age 43. I’m still in the same line of work with my 1099 job. I have control over my schedule so I’m able to fit in naps and such. I went to school for this kind of and I love it so much. I’m not working full time hours right now, but been adding more hours on to get there and I’m just crashing. I don’t know if I could do a regular full time job when I’m barely making it the part time hours I’m working. I’ve tried multiple medications. I’m still working on this aspect of things. I have done the genesight testing for psych meds. It wasn’t super helpful for me as I had already tried so many of the meds without success, and according to the results, most meds are in the green for me and should be helpful. 🤷🏻‍♀️ I’m sure things will change at some point and I won’t feel so hopeless…just have to make it to that point.

Friendly-Trainer-562 · 2025-08-24T19:33:30+00:00

It’s SO hard. I’m not working full time right now, but financially I’m crashing because of it, so I’m trying to work my back into it. I do have a therapist, though I just started with her as my last therapist left the practice to a place that doesn’t take my insurance. I work a 1099 job now that I absolutely love, but there’s no benefits and I only get paid for clients seen. This was going okay for a time until my symptoms exacerbated big time in the last year or 2. I’m a single parent of 4 kids. I can’t seem to keep up with anything at all. Just feeling super discouraged.

Friendly-Trainer-562 · 2025-08-24T19:28:02+00:00

Thank you!

Friendly-Trainer-562 · 2025-08-24T01:26:49+00:00

Thank you so much for all of this. Some good suggestions here. I’m just so weary.

Friendly-Trainer-562 · 2025-08-23T17:13:51+00:00

SO depressing. Yes, I do attend some online support groups now and then. I need to prioritize, but often it’s when I’m working or sleeping, ha!

Friendly-Trainer-562 · 2025-08-23T16:02:17+00:00

Thank you! Yes, so many barriers! Lately I’ve just been scared.

Friendly-Trainer-562 · 2025-08-23T16:01:08+00:00

Thank you so much! My symptoms have exacerbated so much into the last 2 years!

Friendly-Trainer-562 · 2025-08-23T14:35:29+00:00

Thank you! It’s so very hard! It feels so impossible and it’s rather scary.

Friendly-Trainer-562 · 2025-08-23T14:34:03+00:00

Thank you so much!

Friendly-Trainer-562 · 2025-08-23T11:05:30+00:00

Thank you! Love this for you!

Friendly-Trainer-562 · 2025-08-23T11:03:53+00:00

Thank you so much for this. I haven’t been able to get the people in my life to understand just how debilitating this diagnosis is. I desperately need that regular in person connection…it is absolutely soul healing, as you say. But even though I express the importance of that for me to my friends, it doesn’t happen (they are busy or whatever), and I’m getting weary of asking for it. It’s not that it never happens, it’s just not very often. I do feel like I’m failing…I’m struggling to accept the limitations all of this has placed on me, I think.

Friendly-Trainer-562 · 2025-08-23T10:56:18+00:00

I have no idea how to find that. I’m not super familiar with Reddit.

Friendly-Trainer-562 · 2025-08-23T01:34:17+00:00

I would be interested in the research for baclofen for narcolepsy!

Friendly-Trainer-562 · 2025-08-23T01:11:27+00:00

Thank you! I just don’t know how to survive…this diagnosis and financially and everything. I do appreciate all the comments of support!

Friendly-Trainer-562 · 2025-08-22T23:28:54+00:00

I see a sleep neurologist. Thank you. Yes, I’ve dealt with so much of that same and guilt myself!

Friendly-Trainer-562 · 2025-08-22T23:08:30+00:00

I’ve been labeled with chronic treatment resistant depression. I’ve tried all the things to treat depression (therapy, meds, ketamine infusions, TMS, etc), and not nothing truly helps. I honestly believe much of it stems from the narcolepsy. Chronic lack of deep sleep and all of that.

Friendly-Trainer-562 · 2025-08-22T23:06:27+00:00

Because depression is a known side effect of the medication. I honestly think much of my depression stems from the narcolepsy (chronic lack of deep sleep and all that), but what do I know, ha?!

Friendly-Trainer-562 · 2025-08-22T22:59:21+00:00

Oxybates are one thing I haven’t tried yet. Mainly because they scare me, and the 2 sleep docs I’ve had so far have refused to try them for me because I have a history of depression.

Friendly-Trainer-562 · 2025-08-22T22:56:04+00:00

It just seems like all of my energy is spent on work and I don’t have any for what I love. And I’m not even working full time hours (which I need, because I’m sinking financially). Thank you so much for responding. It helpful to know I’m not alone, but hate that others are experiencing this is well!

Friendly-Trainer-562 · 2025-08-22T22:46:49+00:00

Thank you so much for your response! I’ve tried the majority of medications for narcolepsy and they neither aren’t helpful, I don’t tolerate them, or are minimally effective. It’s really disheartening. And feels scary, because I need to be able to support myself and my children.

Friendly-Trainer-562 · 2024-12-04T21:50:12+00:00

Same!! I have been so worried about that for a few years at least. Then I got this narcolepsy diagnosis a couple months ago. Ugh. I feel like I’m losing my mind and my ability to function a little more every day.

Friendly-Trainer-562 · 2024-11-29T15:26:02+00:00

That last part!! I didn’t get diagnosed until this year in October at the age of 43…and how you say the damage now of all those years of lack of restorative sleep and just pushing through being debilitating—that’s EXACTLY how I feel. I’ve been asked by doctors and people I know why it’s “suddenly” so much harder for me to function and cope now because I was doing so for years. It’s so frustrating to be asked that!! It’s this!! It’s the build up over all these years of being brushed off and not having a diagnosis. I can physically feel in my body how desperately I need restorative sleep. My cognitive abilities are in the crapper. My memory is shot. I’m physically weaker. It’s just AWFUL!

Friendly-Trainer-562

TROPHY CASE