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Avatar universal

Narcolepsy – Cataplexy – Sunosi and Adderall Oh My!

Greetings all,

Over the last 10+ years I have been having issues sleeping I have a Cpap I use all the time, I’ve done 5 sleep tests over the last several years and I am still having issues staying awake / focused.

Always feel I am zoning out but I know what is happening and I am able to participate in in depth conversations.
De-motivated – I have house projects and other things personal and work related that I just don’t want to do.

I have good days and bad days.  My last good day I would say was about 2 weeks ago on a Saturday I was able to clean my basement and get stuff done around the house, but this is hit and miss. I try and go to the gym 5 days a week to keep my energy up by doing weight lifting and walking on a treadmill,  I am even down 20 pounds to where I use to be.

I have what I think to be a good medical staff trying to help me but they also have other patients.  
So far we have tried the following meds at their normal maximum doses
Modafinil – Gave me a headache
Armodafinil – worked for a little bit but didn’t keep me awake for long periods of time.
Armodafinil + Adderall Twice a day – This worked for maybe a week or two but still doesn’t seem to help.
Sonosi + Adderall Twice a Day – Same thing the first day maybe two my body was able to stay awake but I took this around 8am today and its now around noon, I feel as though I could take a nap.

Our next steps:
Looking into if this is related to Cataplexy, but since this is a muscle weakness I don’t think that is the case.  My lifts at the gym would have gone down I think and I might not be able to do as much.

Look into other issues with my primary care providers office regarding any other symptoms or concerns around family health history.

We are also debating going over to a tertiary center that would specialize in Narcolepsy.

I am a computer person that is really good at troubleshooting issues,  I think of things like is it my adrenal glands that are having issues since I really don’t get excited to much and when I start to get upset or mad my body kind of calms itself down maybe?
Lives issues and making sure my liver is working correctly

I am trying to think of it from the ground up, it feels like I’ve gotten this far but I am stumped on where to go or what to do next.  In the computer world some times the best thing to do is start back at ground zero and go from there form the simple tests that could reveal new data to the in depth ones that might take a CT scan.  

If anyone could provide some help, insight or ideas of what to try next it would be a great help, I am definitely struggling to understand what is going on and why I cant function.

Thank you
- AJ
1 Responses
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Avatar universal
Key is to identify and address underlying cause.  What do your doc say?  For anything medical, continue working with your doc.  Beware the possibility of overlap with non-med issues though, that's very common.  For the non-med portion, use a CBT sleep training system.  Those methods are substance-free and the usual standard of care.
Helpful - 0
This is my last update from my APNP, my doctor retired.

Thanks for the update.  It sounds like the Sunosi isn't making much difference.  Do you feel like the Adderall works better?  We could stop the Sunosi and have you do the Adderall three times a day.  90mg is typically the max we try to keep the dosing around for Adderall, but accomodations can be made.

I'm suspicious if some of the symptoms you are experiencing during the day is related to Cataplexy? This is typically associated with some form of muscle weakness. Not sure if you notice any of those symptoms at all?  In the event this was cataplectic episodes, adding SNRI in the form of Venlafexine. This can help to counter some of the daytime symptoms of Narcolepsy with cataplexy.

I also again do think it would be pertinent for you to reach out to your primary care providers office regarding your symptoms and concern of family history of diabetes and heart problems. These are things that could be looked into as well, but that would have to come from their office.  I do not do any testing for alternative causes.

In the event we are still struggling to control the narcolepsy, we could also consider sending you to a teritary center that specializes in Narcolepsy management as well, such as XXXXXXXXXXXXX, wherever would be in your network.

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