Several people posted comments, and I posted a note about specific sleep disruption problems and questions I’ve been having. Kiralynx responded to me in the thread, and SAG and I have been conversing via PMs.
I didn't intend to hijack OldLincoln's post, but it seems that's what I did (sorry, OL!!). Also, I think it’s best to have a discussion like this in the forum, in case others might benefit. For these reasons, as well as the fact that more than two of us are talking about it, I decided to separate it out from OldLincoln’s thread and start this one. Without including any repeated quotes, here are what appear to be the pertinent posts, as well as the PM conversation between SAG and me:
Snoredog wrote:Typical Press Release by a drug company. Every study ever done for jet-lag shows OTC melatonin helps with jet-lag, only difference is you cannot make MONEY on unregulated melatonin. They try to scare everyone into taking meaning-less low doses of OTC melatonin so they can show it don't work. One study done was using 300mcg of melatonin, not strong enough to put a rat to sleep much less a human being. Then they used college students who were under 35 who by age produce more melatonin naturally than those over 50.
Think I'm going to stick with the bottle of 300 tablets of Schiff brand Melatonin I get at Costco for $6 bucks, that bottle lasts me a nearly a year and it works great for me.
All regulation does is pad the price you have to pay for it. We seen how well the SEC has regulated Wall Street, how well the Fed has regulated the banks.
luke wrote:Interesting stuff.....my question is:
What is a normal dose of OTC Melatonin and how much can be tolerated? I take 2 of the little pills..I think they're 3 each. Can't say they help me fall or stay asleep though. Don't want to overdo it.
georgepds wrote:(to Snoredog): What dose is effective? What dose do you use?
Kiralynx wrote:How much melatonin is effective depends on the individual and the situation. I have seen melatonin packaged in .5, 1 and 3 mg. It can also be obtained (usually by prescription) in 20 mg capsules. (This latter has been used by some naturopaths for cancer treatment.)
Snoredog is correct about the "warning" about "unregulated supplements." Melatonin can't be patented, and it's relatively easy to synthesize, hence, there's no profit in it, and it is in the pharmaceutical companies' best interests to steer people away from it. Similarly, niacin is good for cholesterol, but unpatentable. And then there's CoQ10 (CoEnzyme Q10) which is top mark for heart issues, energy, and etc. It's one of the safest and most effective products around for congestive heart failure. (I had the pleasure of reading some discussions with one of the primary researchers in COQ10.) But again, unpatentable, so therefore, no Company research, and relatively few doctors are aware of it. There's also at least one small study which indicates CoQ10 is anti breast cancer.
However, I digress. I typically took one 3 mg capsule of melatonin at bedtime, then read for awhile before turning in. Melatonin never "made" me sleep, but it allowed me to drift off, and usually stay alseep. Well, until my apnea began causing hip pain which woke me up, but that's another story. Took almost seven years for someone to figure out the hip pain was caused by apnea.
Earlier this year, I has a diagnosis of endometrial cancer and my stress levels went through the roof. I ended up taking 6-7 3 mg capsules to get to sleep and stay asleep. After my successful surgery, I dropped back to three 3 mg capsules.
After about two weeks on CPAP, I was finding myself waking up, and then dr-a-a-g-g-ing my way through the day, and wondering what the <bleep> was wrong with my therapy, 'cause I'd mostly gotten the leaks under control and the AHI is decent, if not what I'd like to ultimately achieve. Then it dawned on me. I was sleeping better because of the CPAP and didn't need as much melatonin to achieve the same amount of deep sleep. I've dropped back to my original one 3 mg capsule, and that's much better. However, I may pick up some 1 mg capsules the next time I hit the Vitamin Shoppe, and see if I can get it to the minimum dose necessary.
My suggestion would be to start with one 1 mg capsule and see how you do for a few nights. Then adjust up if needed. Most people I have known use one 3 mg capsule, but it's hard to split one of those if you need to adjust down.
Songbird wrote:Snoredog & Kiralynx (and any other knowledgable someone who wishes to chime in), I'm still chasing that "boy, did I sleep well" feeling, even though I've been on the hose since mid-August, have great leak rates and generally have an AHI of 0.0 to 0.3 w/ 1.5 being the highest since I adjusted my 9 cm Rx up to 12 a couple of months ago.
Actually getting 7 or 8 hours of sleep is a big problem, though, and I'm sure there are other things involved:
-- my age, which is 57.
-- PLMD, which is under control with 0.25 mg. Mirapex daily (0 and 0.1 arousals in titration studies 1 & 2, respectively).
-- Adderall usage for ADD; I'm in the process of weaning off it and have worked my way down from 60 mg. daily to 20 mg. daily w/ last dose ideally no later than 2 p.m. (ideally meaning the toughest thing for someone w/ ADD is to remember to take the stupid medicine). I'll be down to 10 mg. daily starting Sunday and zippo two weeks later. (Aside: If anyone knows of a good Adderall substitute that doesn't disrupt sleep, I'd be ecstatic. But Strattera didn't help with my focus issues at all.)
-- DJD (degenerative joint disease) pain, primarily in both knees, which is somewhat under control (meaning I can keep the sharp pains away) w/ a pillow under my knees when laying down plus 200 mg. Naproxen (Alleve) twice daily and 65 mg. propoxyphene/APAP (Wygesic) at bedtime.
-- Possibly insufficient deep & REM sleep. I hit all the stages during my initial PSG, but mostly stages 1 & 2; stages 1 and 2 and a little stage 3 during the two titration studies I've had since then; and no stage 4 or REM in the two titration studies. Unfortunately, although I have the program, I haven't gotten Encore up and running yet (requires setting up a new computer; working on it; perhaps this coming weekend), so I don't know how much I'm getting in any of the stages. Am I right in thinking that's a key question?
I've been taking 6 mg. melatonin for about a month and have been sleeping a little better, but that time frame also jives with weaning off Adderall, so I don't know if it's due to one or the other or both. But I'm still dragging during the day and still have very little energy.
I know a little about vitamins & supplements in general, and there are some brands that I trust more than others for certain things. What about melatonin? Is one brand about the same as another? In other words, Snoredog, do you go with the Schiff brand because it's the best price (because they're all about the same) or because you believe Schiff has a better product quality than others?
What's a good dosage for CoQ10? And again, is one brand better than another?
Until I actually have facts about my sleep stages, should I be taking a different dosage of the melatonin instead of the 6 mg. I've been taking?
OldLincoln wrote:This [meaning getting the Schiff brand @ Costco that Snoredog mentioned] sounds appealing to me. I currently take low dose Sonata but am considering alternatives. Any idea if Melatonin will do that? What strength do you buy?
Kiralynx wrote: [all of this is in response to Songbird]
(re: reported low leak rate and AHI) <chuckle> I've only been on the hose a month. Most AHIs are around 2.0, and I think, with the purchase of two new side sleeper pillows, I may have found a solution for a decent leak rate, though I still haven't sorted out why I have more hypopneas sleeping on my right side than on my left.
(re: Songbird saying she’s 57) I'm not far behind you, at 56.5 years.
(re: PLMD) Can't speak to this as I know nothing about it, except what I've learned here on CPAPTalk.Com!
(re: Adderall... weaning off & looking for replacement) Look into dietary treatments. Boot sugar, starch, high fructose corn syrup and other crapola in the keister and get it out of your diet. ADD runs in my family. I've gotten my symptoms under control with the Specific Carbohydrate Diet. THere was a short off-topic thread about it here: viewtopic.php?f=1&t=36152&p=312315&hilit=SCD#p312315 <evil grin> My co-author often says she wishes I'd have LESS focus, 'cause I'm driving her crazy.
(re: DJD) That, too, is no fun. I thought I had it... but interestingly, getting my therapy going has significantly reduced my pain issues. Ask about getting water therapy -- and then make it a point to do your therapy at least three times a week. It helps. Really.
(re: possible insufficient deep and REM sleep) Not my area of expertise. I hope to have Encore Pro up when I get the new computer. Then I'll know more about me.
(re: Adderall and melatonin) I don't know enough about Adderall to really say... but you may find that you need less melatonin as your Adderall dose decreases. Too much melatonin at night can result in day-time dragginess. Also, if you have that dragginess, look into taking some B12 first thing in the morning, as that can help your body get rid of excess melatonin, and help you stay awake.
(re: is one brand of melatonin better than another?) I'd look for straight melatonin, without the added B6 that some brands have. B6 can make some folks hyper, although please don't ask me where I got that from.
(re: what's a good CoQ10 dosage, and is one brand better than another?) That depends on what you;re using it for. Prior to my cancer diagnosis, I was using about 100mg in divided doses. I used significantly more when I was healing from the surgery. Now I'm back down again. The older you get, generally, the more is needed.
(re: should I change my current 6 mg. melatonin dose?) If you're dragging during the day, it may be too much for you, especially as you reduce the Adderall. You might consider dropping down to 3 mg.
Kiralynx, thanks for your thoughtful response. Just a couple of replies....[conversation between SAG and Songbird]
(SAG) Well, I read though all your posts, and overall it looks like you've gotten a good understanding of everything, and have a good plan. If you want to post all of your sleep studies, there might be some pertinent information there. Yet, if the reason you're cutting down on Adderal is to improve your sleep architecture, and that's in fact what happens, then they might not be really representative any more. Course, you never know till you look.
(Songbird) I don't have a scanner or access to one, and I'm not terrific with computers, so unless there's a way I don't know about, I'm pretty sure I can't post my sleep studies. I could type the info, but that wouldn't show you the graphs. Wouldn't it be the graphs that would show you what you need to know?
(SAG) Yeah, the graphs are quite important, especially the architecture. Maybe you can find a fax machine that scans to pdf files or Staples might have a cheap service that makes scanned files.
(Songbird) Okay, I'll check around. Thanks a lot.
I remember reading that post about the Specific Carbohydrate Diet. Well, just the beginning of it. I seem to recall moving on to something else when Babs said chocolate was a no-no. You've inspired me, though, and I would like to actually start living again, so I'll give it a serious look. Thanks.
About reducing melatonin from 6 mg. to 3 mg., I've never been one to remember my dreams, and I've been particularly without them for the past few years (no longer wondering why, though). I gotta tell ya, last night I had a great dream involving Eric Clapton and woke up with a BIG smile on my face and the acoustic version of "Layla" running through my head. Don't think I'm gonna go down to 3 unless there are NO other choices.
SAG (and anyone else), is it your experience that taking any Adderall is always a sleep disrupter, or is it a "try it and see" kind of thing? I'll try to explain my line of thinking...
What moved me to wean down or off the Adderall is that my BP was up to 140/90 and my pulse was running about 108-110, despite the fact that my pulse has always been within the "normal" range and my BP was usually in the neighborhood of 110/70 or so. No doc had suggested that the Adderall might be causing my insomnia, which has been my main problem through all of this (!), and I hadn't thought about it because so much is backwards with my ADD brain (caffeine doesn't keep me awake; Adderall slows down and focuses my superball-like brain rather than making me hyper, as it would with a non-ADD person, etc.). I started reading about meds, vitamins and supplements to see what might up the BP and pulse, and that's when I saw that Adderall can do it AND disrupt sleep. I bounced some questions off -SWS and decided the Adderall had to go, or at least the dosage had to go down. So yes, in part it's about sleep architecture, but also to get my BP and pulse back in the safety zone. BTW, I haven't checked it in the past few days, but my BP's been consistently down to about 120/80, and my pulse in the 80s/90s, for the past 2-3 weeks. Also, I've taken ginko biloba for quite a few years and quit that two weeks ago after quizzing my sleep doc and making him take a serious look at every med, vitamin and supplement I've been taking. He said the GB also could elevate BP.
At any rate, I've been wondering if my 60 mg./day dosage of Adderall was, in fact, helping me to cope with my SA as well as my ADD, and since I'm now getting restorative sleep, that my BP and pulse were elevating because whatever part of the 60 mg./day was "treating" my SA symptoms was no longer needed and therefore sending my system into overdrive. And if that is true, is it possible that I could still take 10 or 20 mg./day without it disrupting my sleep? (If all of that makes sense to you, congratulations!! )
Marsha