Caffeine, Limping, and Narcolepsy Sx
Howdy! First time poster here!
I couldn't find a useful answer anywhere through traditional search terms, and as of current I'm just not sure the literature on Narcolepsy addresses my specific problem, so I'll go ahead and describe it in hopes that someone else has the same thing going on.
Back in 2018 when I was working in a rehab setting as a psychometrist, one of my coworkers (a psychologist with neuroscience background) noticed that I had a pronounced limp in the mornings, but it went away usually around my second cup of coffee. There's been a lot of research done about motorband disruption caused by the same axis of disorder that Narcolepsy comes from (and why Parkinsonsism exists as an observational diagnosis), but I've found very little lab or research wise looking at psychomotor enhancement from caffeine in regards to Narcolepsy.
I have Type 1 symptoms with cataplectic episodes most notable when I am in bed (can look like a short full body seizure), and I'm keenly aware that without a 200mg caffeine tab in addition to the rest of my medication, my narcolepsy symptoms are far more severe. The problem for me, aside from not having specialized medicine for narcolepsy due to insurance problems, is that the threshold for caffeine is very high for good clinical effect (excess of 400mg/daily). I have other comorbid disorders of hormone and endocrine systems, so I gather that's why I am not having any issues with such high dosages daily.
Of peculiar interest is that my fine and gross motor abnormalities are alleviated by caffeine. I've done some small scale control tests between days where I skip tabs and coffee, and days where I do not, and my limp in particular seems most tied to that effect. The limp itself is pretty stiff on both legs, but I think the direct impact is my right leg, not sure.
If anyone else has similar experiences or thoughts about this, holler at me. I'm curious to know how many people might relate.
Thanks for sharing your story
. I have quite similar symptom but the differences is I got cataplexy and EDS in the morning right after pooping. It sound quite riddiculous, I know... 😁 But it indeed interfere with my day, because the sleep attack last more than 15 minutes. If I poop twice, then two sleep attack coming...! I also notice when I am hungry in the morning, or before lunch, then I got narcolepsy attack. Although, it's not as severe as the morning poop symptom. I wonder how on earth hungriness can trigger narcolepsy... But I got GERD, maybe my symptom correlated with my gut.
On another note, sometimes I also feel limp after waking up, even though I got a decent hours of sleep. Of course, it's not a kind of sleepiness after waking up, it is narcolepsy symptom 😀
My narcolepsy symptom goes worse after eating, any kind of food. I find caffeine works for me only if I consume it at 30 min or 1 hour before eating. But ofc caffeine will interfere with my sleep. My doctor said maybe we need to avoid caffeine on 9 - 12 hours before bed if we have narcolepsy. That means, only ingest caffeine in the morning.
Been a minute since I had a chance to check in! What I read in some of the literature is that Dopamine, the neurotransmitter responsible for motivating and rewarding action, is separated into a few subtypes. The big two are Dopamine 2 and Dopamine 3, you can think of Dopamine 2 as "Go Juice", and Dopamine 3 as "No-Go Juice". As far as I've been able to gleam, part of the motor issues and sleep issues are attached to how these are balanced, excess of Dopamine 2 is implicated in Schizophrenia, but too little of it seems to cause ADHD and Narcolepsy.
What also is interesting is that Dopamine 2 is a key neurotransmitter in aiding digestion. The Small and Large intestines use Dopamine 2 to generate Dopamine 2 (a little circular I know), so if your levels are low overall, bowel movements and digestion can be very suddenly exhausting. That's likely the cause of the sleep attacks around those events, and caffeine is only so much of a neurostimulant. I've had clinicians write me scripts for a self-researched medication plan of Bupropion (blocks Dopamine from reabsorption) and Adderall (I do have ADHD -- this medication stimulates release of Dopamine, Serotonin, among other things), as well as Metoprolol Tartrate (this blood pressure medication also regulates the pathway of neuron activation responsible for the wake/sleep cycle).
I'd take these above findings with a tablespoon of added salt as they're based on loose review of medical literature I am not nearly qualified to make advice for, but I hope they can help you look at your symptoms with a different perspective!
PS: Fun fact is something called the "Brain Skin Gut Triangle", those of us with Dopamine related disorders tend to have brain issues, bowel issues, and skin issues! bowel issues,Go figure!thank you so much! Wow, I don't know that there is a connection between dopamine and gut reaction. That makes more sense because beside experiencing EDS and cataplexy, I indeed realize I have a very low motivation nowadays. Next time I will take your answer here to my doctor. So I am curious, do you still take Bupropion and Adderall, or you just take the caffeine tab to manage your symptoms?
That is so interesting,
. I have no experience with this, but I hope you get some responses. I would love to hear what the community has to say. You mentioned insurance issues. Have you been able to see a neurologist? If so, have you brought up the potential caffeine connection with your doctor? Wishing you the best. - Lori (Team Member) I've sadly had marked difficulty in finding a Neurologist who can take me in a timely manner. Some limitations to my insurance include having a special 'community focus' group designation, so often it's like pulling teeth to get coverage. I'm still fighting my insurance company over their lack of payment to my sleep doctor last Summer (it was even approved by them to go to that doctor), so the battle is very real and very infuriating. How maddening,
. No one should have to go without care because they can't afford it or insurance won't cover it. It's wrong on so many levels. Have you ever considered clinical trials? At the very least, you would likely get a thorough evaluation out of it. Here is an article about clinical trials that might interest you: https://narcolepsy.sleep-disorders.net/research. Please don't stop fighting for coverage. I know it's exhausting, but the system won't change without lots of self-advocacy. Did you at least go ahead and schedule an appointment well into the future with a neurologist? You can always cancel if you find someone who can take you more quickly. Thinking of you. - Lori (Team Member)
