Light therapy for resetting circadian rhythms for better sleep, anybody?

[Sasha]

I was googling around for info about melatonin and found (here) the following:

As mentioned above, the need to use melatonin indicates a circadian rhythm disorder because sufficient melatonin is not in your system when you need to sleep. Melatonin on its own doesn't regulate circadian rhythms, because your body's control center relies on bright light to reset its daily sleep/wake rhythms. Melatonin can aid in shifting rhythms, but most of the effort in regulating circadian rhythms involves suppressing daytime melatonin. The problem isn't that your body needs more melatonin - it produces enough, but when your body clock malfunctions, it produces melatonin at the wrong time of day, and specialized light keeps melatonin out of your system at the wrong time of day, so your body will produce it at the right time.

I feel like death when I wake up and although I leave my shutters open overnight (it's very dark outside where I live), the morning light doesn't wake me. My bedroom faces north and maybe doesn't get enough light. Also, I'm pretty much housebound and although I spend much of the day in a south-facing room, I wonder if it's the same as being outside, light-wise.

Has anyone tried the kind of light therapy that this article talks about to help reset their body clock and sleep better? I had good results on a short course of melatonin (all that is recommended) but am back to square one now that the course is over. I'm not doing well with sleep meds and would like to try something non-pharma if it has a good chance of working.

I'm specifically wondering about what kind of light you'd need. I bought a "sunrise alarm clock" a few years ago that was so dim it barely registered and most certainly didn't wake me or even illuminate the room as much as my 60W lamp. Unless it's going to be a few hundred watts I don't think it's going to impinge on me!

Does anyone have any experience with this?

 

[ukxmrv]

I've tried natural sunshine and a SAD lamp to try and do this several times over decades. Both make feel feel intensely uncomfortable and nauseous. The morning sun is very unpleasant for me. This procedure didn't help me in the slightest - and my level of disability was much worse. My problem may be cortisol rather than melantonin.

Suspect that this procedure is for non-ME people who need to reset an otherwise working system.

I've used melatonin to help sleep at night. Lots of PWME do, it's common. Some people are getting it on the NHS now. It can be hard to find the right dosage (i.e. not to leave one groggy in the morning). Also it just plain stops working after a while and I need to have a break. In my case I use it with a combination of other things and cycle between them when / before they stop working.

Taking melatonin at night doesn't "reset my body clock". It's still the same as before but the melatonin works to put me asleep earlier sometimes.

 

[Sasha]

Hi ukxmrv - that's interesting that you benefit from melatonin but not from bright light in the morning. I recently had what my GP said was the maximum course of melatonin - 21 days - and even that was off-label because (he said) it has only been approved for over-65s (not that there's anything to suggest it's dangerous for anyone else, I think it's just that it hasn't been tested).

When I asked to continue on it he was insistent that it's not a sleeping pill - he took the same line as that in the link I provided, that it's about resetting your bodyclock and is not for long-term use.

I'm sorry to hear you have such an unpleasant reaction to natural sunshine. It's amazing what a range of symptoms PWC have - perhaps we're back to the subsets issue! I don't know whether I have cortisol issues.

I think I will perhaps ask my GP if I can maybe try a "week on, week off" longer term cycle with melatonin, and also perhaps try out one of these lamps. It's possible to rent them before you buy (in the UK) from the SAD Shop (!) so I could rent one for a month and see what happens. They have ones (including "sunrise alarm" ones) that are clearly much more powerful than the one I bought a while back.

Still curious to know if anyone on PR has had a good experience with these SAD lamps and sleep?

 

[ukxmrv]

You can always buy melatonin on the internet if your GP won't write another prescription. It's banned but available.

Maybe in "well" people (like after traveling) the melatonion does get them back to the normal rhythm. For me, it's only useful to put me to sleep a little earlier and have a deeper sleep. I come from a family of night-owls but since having ME it has got a lot worse. Sometimes if I have an appointment the next day it is useful to sleep earlier.

Photo-phobia's common in PWME.

Good luck.

 

[SOC]

I've had various incarnations of these lights over 20+ years. While they did help me feel less groggy during the day in the winter, they didn't do anything for my sleep cycle which has been a mess all my life. That may just be my physiology; YMMV.

 

[*GG*]

You can always buy melatonin on the internet if your GP won't write another prescription. It's banned but available.

Maybe in "well" people (like after traveling) the melatonion does get them back to the normal rhythm. For me, it's only useful to put me to sleep a little earlier and have a deeper sleep. I come from a family of night-owls but since having ME it has got a lot worse. Sometimes if I have an appointment the next day it is useful to sleep earlier.

Photo-phobia's common in PWME.

Good luck.

Melatonin is banned also? WOW!

 

[caledonia]

Don't bother with the light. Get your adrenals checked using the 24 hour saliva test.

 

[Sasha]

I've had various incarnations of these lights over 20+ years. While they did help me feel less groggy during the day in the winter, they didn't do anything for my sleep cycle which has been a mess all my life. That may just be my physiology; YMMV.

Even feeling less stunned would be good! But I was able to sleep normally without medication both pre-ME and during a long remission so I'm hoping that somewhere in me I've got the potential for a normal night's sleep again. I'm sorry it didn't help with your sleep cycle.

 

[Sasha]

Don't bother with the light. Get your adrenals checked using the 24 hour saliva test.

Hi caledonia - I'm not familiar with the stuff on adrenals so I had a quick google and see that some of the insomnia symptoms posited for adrenal insufficiency are mine (difficulty getting to sleep, staying asleep, and waking unrefreshed in the morning). If this isn't regarded as mainstream in the UK NHS, though, I've got no chance of getting it either tested or treated. I'll look into it further. Thanks!

 

[Sasha]

My problem may be cortisol rather than melantonin.

Caledonia mentions adrenal insufficiency which (after a quick google) appears to be a failure to produce enough cortisol. Have you tried to investigate this within the NHS? I've just read up on Addison's disease on the NHS Choices site so the idea that one might not be producing enough cortisol seems mainstream. I'm wondering whether to ask my doctor for a test and if so what test(s). Hypothyroidism runs in my family but I've been tested for it periodically and there's no sign of it. I'm wondering if I might need a referral to an endocrinologist or something.

What a shame we have to tackle our disease in bits like this! I'd love to see a neuro-endocrine-immunologist!

 

[ukxmrv]

Sasha,

I've had ME for over 25 years. Yes, of course, I've looked at Addison's disease and been right through the NHS's process. Had private testing and tx as well. Cortisol supplementation was fashionable about 15 years ago. Some patients still try it of course and there is a lot of debate (esp with XMRV now).

There should be some way of indicating on this forum a "tried everything" symbol

I commented on your question because it's one that has been discussed on ME groups for decades.

My NHS experience wasn't happy. They have any interest in Addison's disease but not any sort of other cortisol problem. It was an endocrinologist.

If you do a search for CFS and Cortisol you will find medical papers on the internet. Plenty out there. People with CFS and ME who take their private cortisol readings to a consultant are usually treated dismissively by the NHS. Very common.

 

[Sasha]

Sasha,

I've had ME for over 25 years. Yes, of course, I've looked at Addison's disease and been right through the NHS's process. Had private testing and tx as well. Cortisol supplementation was fashionable about 15 years ago. Some patients still try it of course and there is a lot of debate (esp with XMRV now).

There should be some way of indicating on this forum a "tried everything" symbol

I commented on your question because it's one that has been discussed on ME groups for decades.

My NHS experience wasn't happy. They have any interest in Addison's disease but not any sort of other cortisol problem. It was an endocrinologist.

If you do a search for CFS and Cortisol you will find medical papers on the internet. Plenty out there. People with CFS and ME who take their private cortisol readings to a consultant are usually treated dismissively by the NHS. Very common.

Thanks, ukxmrv - I've also had ME for 25 years (but with a 10-year remission in the middle, hence I find I've missed some stuff!). Sorry to hear of your bad experience with the NHS on cortisol. Depressingly familiar.

I see on the NHS site that the treatment for Addison's is fludrocortisone, same as one of the treatments for orthostatic intolerance (which I also think I have). I'm quite nervous about fludrocortisone and have the same dilemma as everyone, I think - whether to take some potentially risky meds now that might improve my QoL in the short term but also carry some risks of permanent damage and only mask the symptoms, or wait (possibly a few years) for the XMRV situation to pan out, which has the potential for treatments actually getting at the root cause.

So maybe I'm back to renting a SAD lamp for now! At least any side-effects would be transient.

I like your idea of a "tried everything" symbol! I've tried nothing for a long time and seem to having a burst of trying things again. Just part of the cycle, I guess.

 

[Mark]

New research on a breakthrough finding regarding circadian rhythms today, I've created a thread:
http://forums.aboutmecfs.org/showthread.php?9766

 

[caledonia]

UK and NHS - oh boy. I'm in the US and I have a naturopath helping me with the adrenal treatment. I'm paying for this out of pocket. What it basically boils down to is getting the 24 saliva test, to make sure you have a problem. Then if you do, you would take an adrenal glandular and possibly a few other supplements to assist. It's actually not that expensive in the scheme of things, and it's been one of the best things I've tried so far, which is why I'm excited about it.

You should of course test for Addison's, because if you have it, you would take a cortisol replacement, and then like my doc said that would be like a cure. Plus that would be supported by mainstream docs.

My doc tested me for Addison's awhile back and it was negative, while my adrenals showed up horrible on the 24 hour test. However, my doc wants me to retest for Addison's in the near future. It sounds like it's not always a cut and dried thing, just like the thyroid.

For the thyroid, you should get a complete thyroid panel, not just TSH. You need TSH, free T3, free T4, and thyroid antibodies. My TSH was normal, while my antibodies were extremely high, indicating autoimmune thyroiditis (the thyroid is attacking itself). I've been on Armour thyroid for many years for this.

Here's something very cheap and simple you can try for your adrenals, no need for a doc. Dissolve some sea salt in a glass of water and drink it 3 times a day. The amount will vary depending on your need, but if you add enough to make it taste pleasantly salty, that will be the right amount. I was taking 1 tsp at one point, now I'm down to about 1/2 tsp.

Your adrenals control the salt and electrolyte balance in your body, so you may be craving salt or salty foods (potato chips yummm), also you may have problems with muscle cramps or restless twitchy legs at night disturbing your sleep. If you have the restless legs, try adding magnesium. You may need quite a bit. I'm doing 2000 mg a day - it's a powder mixed in with my sea salt water.

 

[caledonia]

One more thing I found out recently:
Adrenal insufficiency appears to be caused by a partial methylation block. If you have problems tolerating chemicals, meds, etc. consider looking into that. Again, the supps for that aren't very expensive. I've been doing methylation and adrenal supps in combination and it's been a good combo for me.

Here's the real kicker:
Methylation blocks may be related to XMRV - at least Judy Mikovits and Jill James (autism/methylation researcher) are both interested enough to be investigating the possibility.

 

[Sallysblooms]

I make sure my bedroom is dark and I have an eye mask on. No light can come into the eye or the melatonin will not make enough. That is important.

That said, I have balanced my hormones (important) with a compounded pharmacy. I had blood tests to show what I needed with hormones, vit d, thyroid etc. Getting everything you need helps your health of course, but sleep. I sleep 10 hours a night now. Before I started with my supplements I could not sleep at all, it was horrible. We heal when we sleep, so it is critical.

When I was finally getting my body what it needed, I used Melatonin. It helped a lot. I do not need it now.

 

[Sasha]

Hi caledonia - I'm glad you tracked down a thryoid problem, that can be hard to do. I've had the full panel and it all came up negative but I get them done again every so often because hypothyroidism can show up any time.

I tried upping my salt intake a while back but found it made me drink loads and pee loads (sorry!) - my body just wouldn't retain the extra fluid, which I think a lot of PWC with OI find.

I'm hoping to talk on the phone to my doc later today about the failure of my latest sleep med and I'll ask him about his views on both melatonin and light boxes. He's a reasonable guy - but like all of us in the UK, I can only get off him what the NHS will provide! If it's a conventional diagnosis with a conventional available treatment then it's clear sailing, generally, but otherwise we're on our own.

 

[Sasha]

One more thing I found out recently:
Adrenal insufficiency appears to be caused by a partial methylation block. If you have problems tolerating chemicals, meds, etc. consider looking into that. Again, the supps for that aren't very expensive. I've been doing methylation and adrenal supps in combination and it's been a good combo for me.

Here's the real kicker:
Methylation blocks may be related to XMRV - at least Judy Mikovits and Jill James (autism/methylation researcher) are both interested enough to be investigating the possibility.

Interesting again (you know lots of interesting stuff!). I've been reading up on PR about Rich van K's protocol and people seem to have had very varied experience with it, with some getting worse, and it seems quite complex. I'm nervous about trying stuff that might set me back permanently, especially if I'm doing it without medical support. It's nuts that it has to be this way, of course.

Interesting that Judy M is looking at it - I wonder if it's part of HIV treatment? Or whether ARVs just solve the problem upstream?

 

[Sasha]

I make sure my bedroom is dark and I have an eye mask on. No light can come into the eye or the melatonin will not make enough. That is important.

That said, I have balanced my hormones (important) with a compounded pharmacy. I had blood tests to show what I needed with hormones, vit d, thyroid etc. Getting everything you need helps your health of course, but sleep. I sleep 10 hours a night now. Before I started with my supplements I could not sleep at all, it was horrible. We heal when we sleep, so it is critical.

When I was finally getting my body what it needed, I used Melatonin. It helped a lot. I do not need it now.

I agree sleep is critical. Getting my sleep sorted out during my first period of ME (seven years bedbound) seemed to be the start of getting better (I had a long period of remission) but as far as I can remember, all I did was use better sleep hygiene (fixed time for getting up and going to bed, etc.). That worked really well even though I had complete sleep reversal (i.e. sleeping in the day, awake at night) to begin with. That doesn't seem to be working for me this time.

 

[kerrilyn]

I use the SAD light therapy (10,000 lux) and melatonin. I only realized a couple years ago that I think I have Seasonal Affected Disorder, and only this winter how much I'm really affected by it. The light therapy makes a huge difference. For example, I didn't use it yesterday morning because a workman came and disrupted my schedule and by last night I was weepy. I'm a completely different person the days I forget. I've only been using the light from fall to spring but I don't get out much, so may experiment using it on other non-sunny days of the year.

Not long ago, because I think someone on this forum or Prohealth mentioned it, I heard about Delayed Sleep Phase Syndrome http://en.wikipedia.org/wiki/Delayed_sleep_phase_syndrome

I've had this problem since I was a teenager. Prior to early December, when I remembered to use the light therapy everyday again, I was going to bed at 2 - 4 am and not waking up before 10 am - noon. For many years I always got my best sleep between 6 am-10 am and if I woke up before 10 am, I'd be very sick for the rest of the day. I realize I have POTS and cortisol is likely an issue too but I'm wondering about this DSPS too, which I've read can be difficult to correct. Light therapy and Melatonin are recommended for DSPS, and so is dimming the lights in the evening. I've started to wear sunglasses inside after 8 pm when watching TV and I always wear a sleep mask so the room is very dark.

I've used melatonin long term for quite a few years (in Canada). Although I've gone through spells where I forget to take it and my sleep will become worse again. I had a doctor tell me to take it at 7 pm, but that just made me dizzy and nauseous. I must take it by 10 pm to be most effective. I will get sleepy within in an hour or so if taken before 10 pm, but if I forget (as I did last night), sleepiness is delayed or not happen and I will have trouble falling asleep.

I don't know if the light therapy/melatonin combo is what has helped me, but since mid-December I've started to go to bed at 10:30-11:30 pm (sleeping all night) and getting up usually by 7-8 am. (Or 5 am if I drank too much tea right before bed - dumb!). I rarely sleep past 9 am, and I'm no longer really sick when I get up. YAH. I can't believe I'm now sleeping on 'normal people' hours. It still takes me about 1/2 hr before I feel strong enough to rise from bed, but I think that is a POTS thing.