Sleep in ME/CFS

The sensor helps gather some important objective information - when the patient goes to sleep, when she is awake, her heart rate and movement, when the patient awakes. One can quibble that the measurement of various types of sleep are only estimations, but I maintain that over time one gets an idea about what one might be able to do to improve sleep. Certainly, over time, one can decipher a better night's sleep from a worse night's sleep. One can detect patterns of improvement or regression. One can ask why and try various supplements or drugs. 

Let me make some suggestions as to what might help. None of this should be taken as medical advice. I am not a doctor and have never had the slightest interest in being one (although I have taught a number of terrific doctors!).

Vasoactive Intestinal peptide

Vasoactive Intestinal Peptide (VIP) is a neuropeptide with a host of activities in the human body. In ME/CFS, it was studied by Don Staines about ten years ago. Very little follow up study in ME/CFS has been done of this neuropeptide. One wonders why. Both Dr. Paul Cheney and Dr. Ritchie Shoemaker used it in their practices with varying success (until they retired). Dr. Shoemaker describes it here, as it applies to CIRS.  It appears to have broad activity. Dr. Cheney believes it helps reboot the deranged sleep cycle in the illness. The idea is that it needs to be taken from 9-18 months to have effect. VIP is taken in very small amounts by mouth several times a day. VIP can be procured by prescription from one compounding pharmacy in the US. Various testimonials can be found on VIP activities in ME/CFS by searching online, although not a whole lot is available. VIP is a vasodilator that seems to potentiate other drugs or supplements. It is believed to help with sleep. As part of the Cheney protocol it is described here.  This is from several years ago. Testing VIP levels can be done at ARUP labs. Other labs appear to be unreliable.

B12

In the last two or three years, I have learned about transdermal or liposomal delivery of various items, including B12. B12 can be very effective when injected, either methyl or hydroxyl or both. However, for certain patients, injections present a real problem. One very nice solution is the transdermal b12 oils, made in Australia. They can purchased through b12oils.com. This company makes an adenoysl B12 spray as well as both methyl and hydroxyl and various other combinations, including a transdermal b-complex. The oils are delivered by a predetermined sized spray to be rubbed directly on the skin. There are several discussions of b12 oils on Phoenix Rising. This product increases B12 on an OAT test. B12 is closely linked to B2. One can also buy or make several different liposomal b12s. Liposomal products generally are better absorbed. Taking methyl b12 can help with sleep.

Magnesium

A number of years ago I began looking around for ways to get magnesium in the body other than through pills or injections. I came upon a magnesium sulfate cream made by KirkmanLabs. This is effective for short durations, perhaps an hour or two. Ultimately, I explored how to make transdermal magnesium myself. This could be both cheaper and allow me to make larger amounts. Through the internet I have learned to make a transdermal magnesium chloride cream that allows a serious uptake of magnesium. It is especially helpful if applied prior to sleep. It is relatively inexpensive, and it works. Applied in enough volume to the skin, magnesium is critical in putting a person on the road to sleep. Its duration of activity seems to be two hours at the most. To further increase magnesium, I have learned to make emulsified or liposomal products.  Specifically, I have learned how to liposomalize magnesium threonate. This really helps taken prior to sleep or during the night, and it lasts considerably longer than the lotion. In my view, magnesium is a key to solid sleep. Various liposomal magnesium products can be bought online or from compounding pharmacies. They tend to be expensive. 

5-htp, SAM-e, Uridine

It is very difficult to determine what might help slow wave sleep. A few supplements have some anecdotal testimonies. Among these are 5-htp and SAM-e and Uridine. All are mentioned as increasing deep or slow wave sleep. Both of these can be put in a protocol and tested against a sleep sensor. One can quickly determine in a few weeks whether a particular item might improve sleep. 

Piracetam

Piracetam is a prescription drug in Europe. In the USA, it is available as a supplement. It was the first of what are known as nootropics. Piracetam is widely studied but not in ME/CFS. It is hard to believe that there is so little research on this substance in ME/CFS. However, there is some good  information on Piracetam on various sites. The first is cfsremission and can be read here. Scroll down on this page by Maija Haavisto and read what she says. The third is included in a book and website by Erica Verrillo here. In certain cases, Piracetam can have a profound affect on sleep. As is usual, the opposite can happen also. Two more widely employed studies on Piracetam and oxidative stress can be found here and here. Piracetam can be liposomalized. 

Other items

Other items that are worth testing for sleep are GABA/theanine liposomal spray, glycine, l-ornithine, melatonin, valerian root, bacopa, and others. All need to be tested as trial and error.

Drugs

Several drugs are suggested for restoring deep sleep in ME/CFS. Among these are Trazadone and Xyrem. I don’t not know much about Trazadone, but I myself would be worried about a dependency on an anti-depressant. Many drugs are double-edged swords. Some believe that severe ME is the result of negative drug reactions - and. from my own situation, I would tend to believe this. Xyrem is a miracle drug for some patients, with ME/CFS and otherwise. It was studied a few years back by Klimas, with favorable results. Xyrem is capable of putting some patients into regular and sustained deep sleep. It can bring significant benefit to ME/CFS patients, provided they can tolerate the drug. As with many drugs, Xyrem appears to lose efficacy over time - and it also seems to have various unpleasant side effects for some, including heightened daytime anxiety and driving hunger. Xyrem is heavily regulated and controlled by Jazz Pharmaceuticals, which holds a monopoly. Back when it was held by Orphan drugs, Dr. Enlander was interested in doing trials for ME/CFS. In the 1990s, GBH could be procured in a health food store for $30. Xyrem now costs thousands of dollars. It is prescribed mostly for Narcolepsy and Cataplexy.  By definition one cannot have narcolepsy without cataplexy. In my opinion, ME/CFS is a cataplexic illness. All patients should qualify for taking this drug. I have seen this work in certain patients and it is impressive. In 2009, Klimas was onto this treatment, but she seems to have been discouraged by the difficulties in procuring it. 

Low dose oxygen

For years ME/CFS patients have taken nasal oxygen. Generally it seems to relax patients and help prepare them for sleep. Oxygen at higher levels is believed to be toxic to ME/CFS. At lower levels it works in a paradoxical fashion, as recently described by Dr. Paul Cheney. The closer one can take low-dose oxygen to sleep time, the more effective it can be. Certainly a trial of taking low-dose oxygen during the first part of the night is warranted. It seems to blunt awakenings caused by a stress response to low oxygen saturation. One can get a hint of this on a sleep sensor program. More particularly, oxygen saturation can be measured by a simple device placed on the finger and wrist at night. This device measures oxygen saturation and heart rate, so that the problem can be identified. It appears that a good number of patients respond well to low-dose oxygen during sleep. 

And then there is hemp and marijuana based CBD
These CBDs, along with CBN and THCa, and maybe CBG are incredibly promising as a sleep treatment in ME/CFS. I will write a bit about this in my next post.