Non-24 Hour Circadian Rhythm Sleep/Wake Cycle Disorder

[sharkey]

I saw the sleep specialist the other day and he took one look at my sleep logs and said "there's no pattern here at all!", actually it looked like it was advancing every day around the clock to me but he didn't like the way my logs looked, they confused him. Then he said I should go to bed at the same time and wake up at the same time every day

IDIOT!

I guess I never tried that before

Almost forgot, I asked about the light box and he said open a window.

[Norway]

Good gods!! They probably don't allow too strong language on these boards, so perhaps

IDIOT!!

is the best one can do. I get furious when I hear about doctors like that. There are all too many of them. Granted, circadian rhythms didn't make it into medical school curriculum until recently. But those people should be able to use Google at least as well as I. There is no excuse for such ignorance!!

So what do you do now? Educate yourself and treat yourself? In your spare time? I feel like I've done a pretty good job educating myself about DSPS, but without kind and expert guidance I doubt I'd manage to treat myself.

If you want to see "all I know" about DSPS including some links, it's at
http://blog.360.yahoo.com/blog-EkVtCKc_dqe59aJ1wEY-?p=2
if Yahoo doesn't change the URL again

Good luck. Keep us posted.

[sharkey]

Where I go from here is to give up.

I was better off sleeping through Saturdays and skirting by with being late almost every day. I'll have my two understanding Dr.'s authorize a return to work. I'm sure I'll be fired but I can start over at a new job, I've seen a few that pay only slightly less. I'm sure the benefits won't be near what I had but apparently I don't have the benefits I thought I did anway.

I will check out your site though, thanks. I think I've been all about me on this board.

[Norway]

[alwayslateforwork]

Sharkey

Believe me I know how hard it is to keep trying when faced with idiots. I'm having a rare good few days so I'm feeling more optimistic. I have Apnea, PLMD, DSPS & /or N-24, major depression and diabetes. They all interact to mess each other up.

Just treating the apnea alone doesn't work for me. My arousals from PLMD are just as disruptive to my sleep. Xanax at bed time is what finally worked for me. As for the CPAP keep trying and complaining until you get it working ok for you. That message board is very helpful, but everyone is different in what works for them.

I also had to increase my antidepressants - actually added a second one because I was at maximum dose for the first. The weight of the depression with out the meds makes everything seem too hopeless. Even with the meds I sometimes lose hope. The diabetes has to be managed too, because if I don't keep my blood sugars balanced then that leads to fatigue and anxiety. I feel like I live in a house of cards and doing one tiny thing wrong makes it all fall down.

I bought the GoLite on line for $134 from Amazon.com. It really does seem to help - just 15 minutes in the morning (If I've managed to get up in the morning). My doctor told me to take the melatonin about 4 or 5 pm, but I start feeling very sleepy 30 minutes after taking it.so i take it just before I need to go to bed. I was even able to stop my Ambien.

My sleep cycle just happened to finally get to the point the last few days so that I am once again getting up in the morning and going to bed at night. I am praying that with the light and the melatonin I can keep it there.

Other things to try. Ask for work place accommodations under the ADA. I live in California so I know we have more protections than people in other states, but it might be worth a try. It sounds like you have been diagnosed with sleep disorders, that you currently have no adequate treatment for. Sleep is a major life activity. You are not not able to sleep adequately so you are disabled. Are there any modifications to your work schedule that could be made to make it easier for you. For instance after a year and a half of trying, I finally filed a complaint with the Department of Fair Employment and suddenly my work place could allow me flexibility in my morning start time. I am still suppose to be there by 8 am, but I'm not considered late unless I arrive after 9 am.. I still work an 8 hour day so my quitting time varies according to my arrival time. I have to have my supervisor sign my time card as soon as I arrive to document my starting time. This still may not save my job. I still have days when I sleep through my alarms (I use two). I'm currently in the last few days of a month off with out pay as a disciplinary action for my tardies. I can't imagine there being another worse disciplinary action so I imagine the next step is being fired.

Finding what works is a process. When they beat you down like that blankety blank doctor did, use this board to help scrape yourself up off the pavement again and to get ideas of what to try next. Yes I know it's hard, but those of us who are used to living without sleep know how to hang in there even when things aren't easy. We have no choice

Did that help? Maybe if I can convince you there is hope I can convince myself.

[foamy_fan20]

non-24, sleep disorders are a disability. so why aren't we under the disability act? there is no mention of sleep disorders on it at all. like we don't exsist or something. i got told by my sleep disorder doctor that it is a disability. so what is it, mental or pyhsical.

i find i have to explain myself alot, when meeting people. especially when they ask, oh do you go to uni or work? and i say no, i have a rare sleep disorder. and they ask what it is and i say non-24 circadian rhythm disorder. and they're like, oh whats that? and i say...my internal body clock is broken. it's the easier way to explain it i find. than pages and paragraphs of complicated explaining.

[KimberlyL]

have any of you tried Rozerem? my doctor put me on it for a 1-month trial and I found that I had pretty good results with it. I have OSA, MS, Grave's disease with post treatment hypothyroidism, resultant horrendous arthritis, and what seems to be some sort of circadian rhythm disorder. I cannot fall asleep, and then once I do, I cannot stay asleep. The CPAP treatment for the OSA has helped me in terms of the number of hours I can sleep at 1 time, but it has not addressed the staying asleep issue. I'm up to about 4 hours consecutive sleep on a good night. I have also begun using Montmorency Tart Cherry Juice Concentrate, which helps with my night-time pain issues from the MS and arthritis, as well as being very, very high in melatonin and helping with the initial falling asleep. Again, though, it does not help with staying asleep.

Anyhow, long story short, the 1 month on Rozerem I slept better than I ever have. It doesn't affect your memory centers like Ambien does. You do have to take it every night though for it to be effective. It was originally developed to treat jet lag, but they have found that it is helping people with circadian issues that don't respond to otc melatonin. the first 4 or 5 nights I really didn't notice much difference, but after then I noticed that I slept more soundly, and even though I still woke up, I was able to make a trip to the potty and go back to sleep pretty easily. I never noticed any side effects, i.e., drunken feeling, memory issues, etc.

[Norway]

Thanks for the report on Rozerem, Kimberly. Seems like there's been less talk about it, positive or negative, than usual with new sleep aids.

I have DSPS, use light box + melatonin (which definitely is not otc here; as in many other places it's closer to illegal). Responding to melatonin + phototherapy seems to be a confirmation of the circadian rhythm disorder diagnosis - tho' there are DSPSers who have issues there, too.

With your pain and OSA problems, I imagine it would be more difficult than usual to diagnose a circadian rhythm disorder. And, of course, there are still way too few doctors who know anything about it.

As I'm sure you know, Rozerem is supposed to affect some of the melatonin receptors directly instead of just pumping melatonin into the blood in greater quantity or earlier than usual. The only interesting comment I've heard about it (other than some griping about its non-effect), is that it only works at right around the time you should be nearing sleep anyway. Someone who'd found it helped in the evening, experienced no effect at all when she tried it at 8 a.m. after getting off a night shift.

As I understand it, it is our wake-up time which is more or less hard-coded, whether that is 5 a.m. or noon. Both melatonin & Rozerem aim at helping us get to sleep at a reasonable time. I don't think there are claims that either of them lengthens the "sleep episode" other than by getting it started right. But I haven't visited Rozerem.com since before release. Should maybe read up more.

Hope that others, too, will report on their experiences with Rozerem. Good luck.

[KimberlyL]

since the 1 month freebie trial (he gave me 30 days worth of pills) and having to pay for the drug, I've been very stingy about using it because of the cost involved. It definitely does not work as well if you don't take it every night. I also had no luck with it when trying it other than when aiming for a 10 to 11 p.m. go to sleep time, i.e. taking it at 9 to 10 p.m. so that I felt sleepy about 1 hour later. Now, the cherry juice that I'm using - honey, like clockwork - 35 minutes tops after swallowing that stuff, I'm yawning my head off and ready to get to bed.

I think I'm not going to fill the Rozerem anymore because I just cannot afford to take it every night cost-wise because the other medications that I absolutely have to take to maintain my life from my thyroid standpoint and then 2 other drugs to counteract what the 3 thyroid meds do to me run me around 300/mo.

The cherry juice is about 15/mo; that I can afford - found it online through King Orchards in michigan - just google them and they'll pop up. I had gotten it through a local health food store and it was costing 50/mo so it was on its way out too until I found this more reasonable supplier - the only thing is the stuff through King Orchards has to be either refrigerated or frozen until use, whereas the stuff at the health food store was "shelf stable" and only had to be refrigerated after opening the bottle. So, if you don't have a lot of frig/freezer space available, you cannot take advantage of the savings buying by the case unless you have friends that want to go in on a case with you.

I have yet to actually be diagnosed with CRD, but given my response to Rozerem and my detailed sleep logs - there is a very strong suspicion that this is the problem. Again though, it will be nearly impossible to be actually diagnosed because of the other issues going on with me. It is no wonder that people just absolutely give up pursuing diagnosis and treatment for these disorders is it?

[turtlecat]

So glad I found this place! My son (almost eighteen) has N-24, has since about 14. He's trying so hard to "keep to a schedule," and has done fairly well for 2-1/2 weeks, but it started drifting too much again, so since he's almost 18, we're going to try Ambien a couple nights a week to try and bump him back and then stay okay for another week, etc. Don't know if it's going to work though. He took 5 mgs last night and went to sleep in 40 minutes. Tonight he took 5 mg's tonight, went to bed, and got up 2 hours later. He got sleepy, but not sleepy enough, and then after two hours, was wide awake. I guess we'll try 10 tomorrow.

I will say that I found something new and very interesting on this board (and one other place I found tonight)--seems a few people with N 24 have thyroid issues (some just borderline) And many people have borderline thyroid issues and don't even know it, so even more people with N 24 (or DSPS) could have thyroid issues and just don't know it.

I just found out several months ago that I have Graves' Disease (hyPERthyroid). Becaue of this, I asked my son's doctor at his physical last week to test his TSH (thyroid stimulating hormone). Don't have the results yet. Wonder if there's any connection?

II'm about to fall asleep myself (it's 2 a.m. and he's still awake).

Will be back here later tomorrow! ( Hope you guys are still around.)

[KimberlyL]

I have grave's disease as well. Underwent I131 ablation treatment about 8 years ago. I had gone into a thyroid storm and it nearly killed me; so, I had to make a decision fast - ablate or surgery - since I couldn't afford to miss 8 weeks of work - I ablated.

I've also had circadian problems my entire life. If my thyroid hormone levels are okay with supplementation I have less problems - if they are wonky I can go days without feeling sleepy - I'm exhausted, but cannot fall asleep.

[Norway]

Hi turtlecat and kimberly,

Thyroid. I take 75 microgram thyroxine daily which isn't much, I think. I, too, have wondered whether there might be a connection to circadian rhythm issues, or not. Haven't found anything scientific about that. Anecdotally there would seem to be a connection as it gets mentioned a lot. But the thing is that anyone mentioning sleep issues to a doctor gets checked for thyroid. The rest of the population mostly doesn't get checked. Somebody should do a study checking thyroid in a large number of normal sleepers to find out if their percentage is the same as ours...
....If that made sense.

K, your reports about Rozerem seems about like most of them. Seems like it should work for more people than it does. It's reported to be very well studied. Even at the price, it would seem unlikely to pay for all that research and marketing if it doesn't work for more than just a few people. Strange.

tc, I've heard about so many teens lately just like your son: DSPS or Non-24 starts at about 13-14 but doesn't get really unmanageable until about 17. (Can also start earlier - and is sometimes pretty well unmanageable from the start.) It can have nasty social effects - parents and school don't believe the kid is really trying, punish him or her by kicking off the athletics program or whatever. It's a touchy age and I think the most important thing is that at least one parent really believes and supports and is willing to fight! Being taken seriously at that age is so important.

Has he got a diagnosis from a doctor who knows what s/he is doing? (Seems like most of them don't know enough about our circadian rhythms!) Have you kept sleep logs and shown them to an expert? Have you tried bright light in the a.m. and melatonin in the evening? Getting the timing right is real tricky, but it has good effect for quite a few of us. Sure wish I'd known more at 18!

Good luck!

[turtlecat]

Thank you for the quick responses!

I'm late getting to a doctor's appointment, but I had one quick thing I wanted to mention. Rozerem apparently has been associated with decreased testosterone and increased prolatin levels, which may be why it's not "out there" as much as you'd think. I was overjoyed when I first heard about it, but not so sure about it now with this possible side effect information. Just thought I'd throw that in.

Pam

[KimberlyL]

I have ended up not even messing with the Rozerem anymore - it just doesn't work very well on an "occasional" basis, and I cannot afford to be on it every night - so yet another promising idea down the tubes

[turtlecat]

Hi all. Man, that Ambien idea was sure awful! He took 10 milligrams last night, went right to bed, but didn't go to sleep. Had hallucinations, extremely dizzy, threw up several times, saw five of everything, the bed was moving...Never again. Finally went to sleep about 3 hours after he took it. He's still dizzy and a little nauseous today, but not as much as last night.

Anybody know a good sleep doctor in Virginia--someone who actually has some knowledge/experience with sleep cycle disorders? I took him to one at 14 and got the usual, oh, just make him get up at the same time each day and go to bed at the same time each night. We all know how well that works! Did get a light box at her suggestion, but didn't use it much. Will probably try starting that back up next week. Haven't tried melatonin yet, but am thinking about it. I'm also going to set up an appointment with a the nutritionist/pharmacist at a compounding pharmacy to talk about the melatonin and the large doses of methyl B12 that I've read can help this. What I read on the internet says all this is safe, but I just want to get with someone who knows more about this stuff that I do to make sure! I looked over his website and emailed him about it and he would very much like to talk with us.

The diagnosis of N-24 is mine, due to his symptoms and what I've researched for years! As mentioned, most docs have never heard of sleep cycle problems at all, much less this one! But I do want to find a doc so I can have it medically diagnosed and in his records, and hopefully help some!

Has anyone had to do an overnight sleep study for N-24? I don't see that it would do much good. (I did a sleep study myself 10 years ago for regular insomnia, so I know what the studies are like.)

Kimberly--I think I probably missed something, but does cherry juice have something to do with N-24?

Hope everyone is doing okay!

Sorry this is so long!!
Pam