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choco.creme96

602d

Anyone else have a lot of trouble adjusting to narcolepsy from a mental health standpoint? It's been so hard adjusting to the frustrations and limitations that this diagnosis can bring. On top of that, some of the meds I've been on have made my anxiety worse (looking at you, Adderall and Ritalin 🙃). I don't have any side effects with modafinil, but unfortunately, it's not strong enough on its own to help me, and we haven't figured out a better alternative to the older stimulants yet.

Top reply
    • pugbug1231

      534d

      I have found mental health to be highly overlooked when treating narcolepsy. For me, stress triggers narcolepsy and strong emotions used to cause cataplexy. If I had any advice, it would be seeing a psychiatrist along with your narcolepsy doctor and getting them to collaborate on your care. This was a game changer for me. I did not realize I had untreated bipolar disorder (which was a killer for my narcolepsy) and I was able to get treatment which has allowed me narcolepsy medications to do their job. I still have a great deal of anxiety, but it made me realize my narcolepsy is respondent to my mental state. I’d also recommend regular support group meetings and therapy. The diagnosis is not something to handle alone and I’ve found having people around who understand what it’s like makes the process 20x easier. There are online support groups at narcolepsy network for free and people are incredibly welcoming and friendly (at least for me). ☺️ I wish you the best of luck and while you’ll never feel normal, life does get better as you find medications that work for you so you can start to learn how to work with your “new normal”

    • pugbug1231

      534d

      I have found mental health to be highly overlooked when treating narcolepsy. For me, stress triggers narcolepsy and strong emotions used to cause cataplexy. If I had any advice, it would be seeing a psychiatrist along with your narcolepsy doctor and getting them to collaborate on your care. This was a game changer for me. I did not realize I had untreated bipolar disorder (which was a killer for my narcolepsy) and I was able to get treatment which has allowed me narcolepsy medications to do their job. I still have a great deal of anxiety, but it made me realize my narcolepsy is respondent to my mental state. I’d also recommend regular support group meetings and therapy. The diagnosis is not something to handle alone and I’ve found having people around who understand what it’s like makes the process 20x easier. There are online support groups at narcolepsy network for free and people are incredibly welcoming and friendly (at least for me). ☺️ I wish you the best of luck and while you’ll never feel normal, life does get better as you find medications that work for you so you can start to learn how to work with your “new normal”

    • Vic782

      558d

      Absolutely. I was in my second year of college when I started getting symptoms and would only be able to do the bare minimum in life. I was taking 5 hour naps OFTEN, studying as soon as I woke up- then I get COVID as soon as I’m feeling great with modafinil and my mental health suffered for quite a bit. Barely made it through the year. It gets better when you find the right meds- right now I’m on a low dosage of modafinil and I’m seeing it work again as my long COVID symptoms die down. Ask if your dosage can be upped because I know there is a pretty big gap before tolerance is built up.

    • Musiclover22

      563d

      I find that I go through cycles of “this sucks, but it’s manageable” for a while and then I reach a breaking point where I feel so frustrated. Frustrated about having it, frustrated about everything else I deal with, frustrated that other people don’t understand how exhausted I feel, etc. I also feel like I still haven’t learned how to maintain a baseline.

    • Amiwwa

      575d

      I'm on both Adderall and modafanil and it's changed my life. Of course everyone responds differently. But I went from literally falling asleep at my desk while on just Adderall for my adhd, to making it through an entire work day and having the energy to pick up my son from daycare and even get a few things done after he falls asleep at night. I can actually get things done without having to stop halfway through because I'm falling asleep.

    • AlPal1993

      590d

      Yes, yes, and yes!! I also have paranoid schizophrenia. When I first started to notice symptoms of narcolepsy well before I got my diagnosis after my sleep study I was told by all of my doctors that sleepiness is a side effect of my antipsychotics. Funny thing is that’s why I take them at night. Nobody would believe me that it wasn’t the darn antipsychotic. Still to this day, even after my sleep study results my psychiatrist does not want to admit she was wrong. On the mental health standpoint it is so hard for me to talk about my narcolepsy with family and friends because I feel like nobody believes me or wants to listen. I’m just “lazy” or “not getting enough sleep” or “oversleeping.” Certainly makes my brain feel like crap

    • WallyWasTaken2

      591d

      Absolutely. I've had to switch meds again and again (seems like every month or two months) because my liver is too sensitive to let anything be processed through it, and what it is okay with isn't ever strong enough. One med im taking I would probably be better if they upped the dosage, but it's past the set maximum dosage even if theyve tried + seen good results with the dosage I'd be taking during clinical trials & my doctor was one of the ones doing the clinical trial. It just really sucks, and it can be pretty frustrating not to be at your best or where everyone else is when you know you could be. I know exactly what you're going through.

    • becbecmuffin

      592d

      Adjusting mental health wise is really tough. I'm still trying to learn to give myself grace when I can't do things. I take adderall but i also have adhd so it's an attempt to kill two birds with one stonem i couldn't take it until my anxiety got better though cuz it really sucked there. My anxiety got better with getting on a good antidepressant.

      • choco.creme96

        591d

        @becbecmuffin Thank you! I have ADHD as well. That's exactly what I'm struggling with right now. I never lowered my expectations for myself after my narcolepsy diagnosis, and that's caused a lot of anxiety for me. It's been pretty debilitating, but I'm slowly getting better with individual therapy and IOP. Unfortunately, my anxiety used to be pretty well controlled by Cymbalta, but now I'm at the max dose and it's still not helping anymore. I'll be starting the process of getting on Wakix tomorrow, so hopefully that'll help so I can get off the stimulants, at least for a while.

    • xSkyGemx

      593d

      I want to try adderall but my doctor won’t do it. Sometimes cannabis helps but it can cause munchies which doesn’t help for my weight.

      • choco.creme96

        591d

        @xSkyGemx I use cannabis to help with my chronic pain, but unfortunately, more energizing strains tend to make me more anxious too.

      • choco.creme96

        591d

        @xSkyGemx I think it's one of those things that you really have to try for yourself to see how it'll affect you (as long as you don't have any major contraindications). My best friend started Adderall XR for ADHD right as I was starting Adderall IR for narcolepsy. We both have pre-existing depression and anxiety, but Adderall actually helps with her mental health issues, while it made mine worse. It was a great reminder of how everyone reaponds differently to medications

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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