Newbie says, "RLS + N24? Plus Adrenergic POTs, FMS, IBS, and other letters of the alphabet."
I found a few scattered versions the topic of RLS +N24, most many years old and the most recent was 6 months ago and I could not respond so I'm starting a new thread by way of my introduction to the group. I used the blog/personal article flair but very much welcome comments/discussion/relating, etc. I seek to feel less alone in this sleepy madness!
Part I - RLS
"Normal" sleep has always eluded me for as long as I can remember. That is, being asleep when others wanted me asleep. I energize at night regardless of how tired I am, so I called it "night owl. But I have also always slipped around the clock in terms of when I am able to fall asleep. When allowed to sleep as long as I want to, I used to, in my younger days, sleep a good 9-10 hours once I did sleep. As I aged another issue got worse and worse, which is RLS, which would also get worse at night and improve when the sun came up, enforcing a stay up all night, sleep as long as possible, and then be miserable the rest of the day lifestyle. That slid around tho, was never stable for any period of time.
My mom and I called the RLS sensation "jumpy legs" and thought it was a quirky family trait because she had it too. My first memory of it was around 6 or 7. I also have Periodic Leg Movement, which became clear when my first husband asked me why I kick him exactly every 13 seconds at night. I'm 63 as of this writing. I was around 30 when I first randomly read about RLS in a "rare and undiagnosed conditions" book that came across my path. I could NOT believe my eyes when I read exactly what I experienced on paper, in a book. I marveled at how the official condition had as stupid a name as what I already named it. Restless Leg Syndrome vs Jumpy Legs. Heh.
At this point, it is referred to by my sleep neurologist as severe and refractory. After trying everything else, I have been taking 5mg of Methadone and 75 mg of Dipyridamole every night for several years with pretty good success. Everyone agrees I need more serotonin, but SSRIs make it so bad I can feel it in my spine, and even my arms and legs and head will start to jerk. So that's a non-starter for me taking that class of drug. I'll just have to stay kinda borderline depressed. That said, my RLS is mostly bearable most days unless I become sleep-deprived, which is a complicating chronic problem as it makes RLS worse, because...
Part II - N24?
As of this moment, I am undiagnosed, but my RLS doctor, who is also on this Reddit's list of sleep neurologists, is also apparently a circadian rhythm disorder specialist. I lucked out on that one. I was explaining to him that I was convinced I had a 25-hour circadian rhythm a few months ago and had had that conviction for decades, but I realized there was nothing I could do about it and it probably sounded crazy. He informed me, at 62 years of age, that there is a name for it and a medication for it as well. Gob-smacked is the word I have for how that felt, and I'm not even from the UK.
He explained how there was a drug that could force me into a 24-hour clock that was made for the blind, but that out of pocket it cost about 26-28K per month or year; I can't remember which because I almost fainted at the number. Either way, no. But that insurance could make it manageable. To get them to pay for it, I have to go through a 3-week diagnostic process where I just sleep when my body wants to, and then once I have the diagnosis, it would take several appeals to get the insurance company to agree to it. That sounded so hard to do, actually, because of a lifelong habit of NOT sleeping when my body wants to. I am assuming it would be challenging to actually not fight it, especially during the day. That sounded like a frustrating and exhausting process, so I thought, nah...now that my RLS is sorted, I probably just have to try harder.
Yep, at 63, I still had the notion that trying harder would ever help anything I have fought my entire life. I guess it's because RLS was the more immediate and agonizing of the two and masking it, and between that and the fact I haven't worked for years because of POTS and FMS (both of which have their own sleep complications) I kind of got away with sleeping during the day sometimes. I didn't get to have children or a career because of all of this, so those things don't impose themselves on me since I stopped working a "regular" job about 25 years ago, thanks to a partner who has been able and willing to take care of our basic needs. But now I am officially aware that I may not be imagining the whole 25-hour clock thing, and my RLS is almost under control, and aside from random adrenaline dumps from my POTS, the cycling around the clock thing is way more obvious than it's ever been. And frustrating. So I finally told the doc, yeah, let's start it.
But then I realized I may be on Medicare in the next few years, and they absolutely will not cover this unless I am completely blind. So I'm sort of afraid to get that kind of potential relief just to have it yanked away from me after a few years and face my old age without it. So I got myself .5 mg of melatonin capsules and a 10,000 watt UV free sunlamp, with warnings from my eye doctor that it might burn my skin or retinas because I am apparently also photosensitive from the other meds I take, and tried to use that last week. Good news is that melatonin is actually good for my adrenergic POTS, which is a fine surprise given that most things that are good for one thing are bad for a another of my conditions. But after a week it isn't working. I wanted it to so bad. But I am back to cycling. My doc wrote back in the portal to say it was a good start, but won't be as effective as the med. Apparently not.
I then tried to write out a schedule for myself to see what it would be like to just go ahead and cycle around the clock and intentionally arrange my life that way. It was very confusing to write down what a month like that would be like. And still be able to take the meds for all my other issues like thyroid and RLS in a way that makes sense and that I won't completely mess up and end up under or overdosing myself. Honestly, on paper it looked kind of impossible, even without a job or family demands. So now I'm back to trying that drug again, even if it's just something I get for only a few years. I could be hit by a truck tomorrow, so maybe it's worth it for a day to be relatively normal. To know what it is like to be rested. I've always been curious.
I want to add here, that chronic sleep deprivation is a big contributor and trigger for my RLS, POTS, ANS dysregulation, IBS, Fibromyalgia, ADHD, chronic inflammation (resulting in dry eye disease), autoimmune hypothyroid, and inability to keep my weight down (I'm over 100 lbs overweight with an extremely slow metabolism)---it is at the bottom of everything that makes my life hard, and it's the only life I've ever known. So actual regular sleep...it could change everything.
I feel hopeful and hopeless in equal parts, but I'm really glad to have found this group, because it feels like I may have met my people at long last. Reading your experiences--wow....so familiar. This is my life.
If you read this far, here's the medal you richly deserve!