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| wish I could sleep this well... |
I don't have severe narcolepsy, but it is bad enough to interfere with my life on a daily basis. I never sleep well, struggle with insomnia, wake up tired (I always feel worse than I did when I went to bed), and want to fall asleep throughout the day. I've been fighting the urge to sleep during the day for so long that I've just interpreted it as being tired, but after some reflection, I've realized it's sleepiness and my body trying to fall asleep.
18 years ago I was on Provigil (generic = modafinil) to help me be more alert during the day and Amytryptiline to help me sleep at night. Amytryptiline is actually what I took as a teenager to combat the phantom pain I was having in my shoulder from nerve damage when I was hit by a van. It's also an antidepressant, I believe, but it has proven helpful in a variety of situations, like mine.
I wasn't tested for narcolepsy at the time, just given meds to help the symptoms I was dealing with. The meds worked, but after a year or so I stopped taking them because we wanted to get pregnant and you can't do so while taking those meds. I didn't have a resurgence of my symptoms after I stopped taking the meds, other than just being tired all the time. But isn't everyone? Plus, I wasn't gluten free at that point and was still dealing with those issues, which muddied things.
Going gluten free more than 9 1/2 years ago helped a lot, but since the boys were born, I've been getting worse again- more tired, less energy, more disordered sleeping. I just blamed it on being older and trying to keep up with the boys, but in hindsight, I don't think they were completely to blame.
In August my symptoms became noticeably worse, causing me to bring it up when I went to the doctor for a physical so I could go to Wood Badge. I thought it was just anemia or a thyroid issue, but all my blood work came back normal. We did another round of blood work to test for some more random things, but that came back normal as well. The doc did a screening test that showed I might have sleep apnea. So I was referred to a sleep specialist, who had me do a sleep study.
The night time sleep study showed I don't currently have sleep apnea (though there's a good chance I could develop it later on, as I did show low level symptoms of it). The daytime sleep study showed I have narcolepsy, manifesting as excessive daytime sleepiness (EDS), disordered sleep patterns, and insomnia. There's some other symptoms of narcolepsy, but I don't currently exhibit them.
From what I've learned from others with narcolepsy, milder symptoms seem to be better managed through non-medical means than the more severe symptoms. Those who have more severe symptoms don't see the results and have to rely on medication, which even then doesn't always work.
I mentioned not too long ago that I was doing a lot of things to stay functional without taking medication. As you'll see, I wasn't lying about that.
What doesn't work for me:
I tried a low dose of modafinil to help me be more alert during the day, but only lasted four days. The stabbing migraine, mental fog, and lethargy just weren't worth it. There's other meds I could try, but for now, I'm trying to manage it as much as possible without medical intervention. Given how I reacted to this one (and how in general I don't react well to most medications), I don't have a lot of hope that I would react well to the others.
Caffeine (soda, monster drinks, etc) just make me jittery, not alert, and they will give me insomnia if I drink them too late in the day. I don't drink coffee, but I can't imagine it would be any better than a caffeinated soda.
Here's some things I do that have helped me cope and be more functional:
- Happy light in the AM while on the treadmill or bike. This is on days I'm not hiking outside in the morning. Sunshine seems to be helpful for general alertness and mental clarity.
- Shower as early as possible- this helps me wake up faster. I even take a shower before races just to make sure I'm awake and functioning.
- Get out of bed and get moving as early as possible. Laying around in bed makes me more tired and groggy. There are definitely mornings where I have to talk myself out of bed, though.
- Plexus products- Triplex (Slim, BioCleanse, ProBio5) X-Factor, and VitalBiome for energy, gut health, and cleansing.
- MCT oil (1 tbl twice a day) to help with fat intake and energy
- I'm on the keto diet (high fat, moderate protein, low carb) to decrease narcolepsy symptoms (it also helps with my PCOS and celiac disease) and improve gut health.
- Advanced TRS by Coseva to help flush heavy metal toxins and improve gut health. So far, this has helped reduce the brain fog, making it easier to focus on tasks.
- I drink lots of water to flush everything out.
- Essential oils: Balance (by DoTerra) helps with mood and hormones- less anger/irritation/mood swings (from being so tired). I started using Balance after the boys were born to combat postpartum depression (it wasn't severe, so diffusing Balance every night as I slept was enough to combat the PPD).
- Regular, moderate exercise, 5+ days a week (sometimes- I'm still working on consistency). Nothing too strenuous right now, though I do want to train for more races again. I'm not sure if I'll be up for a half marathon this year, but I definitely want to be able to do one next year.
- Naps. This is still a work in progress, though the times I've taken one, I did feel a lot better than I'd expected, and it didn't give me insomnia. Giving myself permission to take a nap isn't always successful, but I'm working on it. Even just laying down and reading for a while is proving helpful.
- Weighted blanket at night to help me fall asleep faster (staves off the insomnia), to help me stay asleep through the night, and to go back to sleep faster if I do wake up. Not sure how it works, but it does.
- Consistent bed time. I'm still working on this one, but it's worth working on.
- Comfortable mattress- we've had it about 10 years now, and we love it. The mattress we had before that was so uncomfortable and neither of us slept well on it. Pressure points on the hips and shoulders made it so hard to sleep. The chiropractor I was seeing at the time recommended the Intelligel mattress she'd bought, so we looked into it and bought one. The gel matrix goes a long way to eliminating pressure points and allowing us to sleep better.
- Regular chiropractic care. I don't know if it directly helps with the narcolepsy, but it helps keep the headaches at bay, so it helps me be a more functional person. Being functional is good.
Coping
- I rarely sit still for very long, as I find it hard to stay awake. As in, I very rarely sit and watch a TV show or movie. I cope by keeping moving in some way- typing on my laptop, twitching/fiddling my hands, etc. I'm always tapping away at my laptop while waiting for doctor appointments. Partly to be productive, partly to stay awake. My chiropractor always jokes that he'll know something's really wrong if he comes in and I'm not working on my laptop.
- Sacrament meeting (church) would be the hardest if I wasn't trying to keep Ocean quiet- he has a hard time sitting still and not talking. I did struggle in Sunday School and Relief Society, but I haven't attended them on a regular basis in years. First because of the boys (it's so hard to go to class once they're walking, but still too young to go to nursery) and now because I'm in the Primary presidency. There's always something to be doing in Primary, so I don't have too many problems there.
There's a few other things I can try, but I need to give my current supplements a bit longer before I add anything new.
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