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Top Doctors on Sleep: What the Experts Recommend for CFS & FM Patients

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If you are a CFS and/or FM patient, you know the drill all too well: insomnia, unrestful sleep, followed by crushing fatigue. Ironically, you’ve spent plenty of time in bed, trying in vain to rest. And the next day, it begins again. It’s a cycle that must be broken if you are to make any progress on the road to recovery. Fortunately, there are both pharmacologic and alternative treatments available to those of you who are desperately seeking a good night’s rest. Read what a few of the leading CFS and FM physicians recommend.

Editor’s Note: The following information is excerpted from each expert’s complete treatment plan. The upcoming HEALTHwatch Treatment Guide will feature complete new interviews about a range of important issues that affect CFS and FM patients, with Charles Lapp, M.D., Daniel Clauw, M.D., Mark Pellegrino, M.D., David Bell, M.D., and Derek Enlander, M.D. Additionally, you will find complete treatment protocols from leading doctors at ImmuneSupport.com.

Charles Lapp, M.D.

Charles Lapp, M.D., is nationally recognized and sought after as a medical consultant for CFS and FM. From 1992-95, Dr. Lapp acted as Medical Director of the Cheney Clinic in Charlotte, North Carolina. He currently maintains a private practice of medicine and pediatrics in Raleigh, North Carolina, and is Physician and Medical Director of the Hunter-Hopkins Center, P.A.

In sleep management, one of the best things we have found is Klonopin and Doxepin, but you don’t have to start off with prescription medication. I really recommend that if you are not having too much of a problem, you might want to start with something simple like Valerian root, which is a medieval preparation that has been used since the earliest centuries of man. It still works fine. You may even want to try an over-the-counter preparation. We’ve had great success with Excedrin PM and Tylenol PM. A lot of people are talking about using melatonin, which is also an excellent therapy.

With melatonin there are a couple of things I would point out. We don’t know as much about it as we would like, although we know a lot. Needless to say, I don’t recommend it for children younger than the upper teens. Generally the dose is 3 mg if you are under the age of 50 because it is age dependent. 3-6 mg if you are over the age of 50. It’s taken at bedtime. If you are going to use melatonin, that is how you do it.

I like to couple melatonin with light therapy in the morning, because melatonin really doesn’t knock most people out. It’s not a sleeping pill. What it does is increases your sleep efficiency so you sleep better and you are more likely to wake up feeling refreshed in the morning. The best way to benefit from melatonin is to take it at night. Then, when you get up in the morning throw open the blinds and get all the light you can. Turn on the lights, too, and get as much light as you can for the first three or four hours. That’s how it works best.

Melatonin is the body’s natural sleep inducer. For that reason, we use it and have the best success in those patients who have, what we call, ‘phase shifted.’ Many of you probably used to fall asleep at ten or eleven o’clock. Now that you have contracted CFIDS or FM, you don’t want to fall asleep until one or two in the morning. What that means is that your body clock has phase shifted. Melatonin is great for shifting back. For those people who stay awake all night and sleep all day, it’s a great drug for getting you back in the swing of things again.

Drugs for Sleep

If that doesn’t work, we go to prescriptives like Klonopin and Doxepin in very, very low doses. Just one Klonopin at .5 mg. I recommend 10 mg of Doxepin, which is about 1/15th of the normal dose of Doxepin. So, very, very small doses in CFS. We have excellent luck with Trazodone (brand name: Desyrel), at 50 mg nightly. The nice thing about Trazodone is it doesn’t cause dry mouth and it doesn’t stimulate your appetite, so people don’t tend to gain weight on it like they do on Doxepin. The other thing is that it works best in the early morning hours. It puts you into a deep stage three and four sleep. If you are one of those persons who falls asleep pretty readily, but then wakes up every hour, or wakes up wide awake and can’t go back to sleep, Trazodone may be the thing that you want to take because it works best for that sort of problem.

If those don’t work, then we turn to the typical hypnotics: Ambien, Halcyon, Restoril, Dalmane, Doral, Prozon. There are probably a dozen hypnotics available. Most of them are related to the Valium type drugs including Ativan and Xanax, and they have side-effects of their own, but if we need them, we use them for sleep. Sleep is very important. If you don’t get a good night’s sleep, you are going to wake up cranky, irritable, and achy.

So, that is the first step. The second step is what I refer to as ‘central activation.’ We do this for two reasons. One is to increase energy. The second is to increase motivation. We do this generally by increasing serotonin. Virtually all studies of brain transmitters have shown that patients with FM and CFS have low levels of serotonin, and sometimes low levels of dopamine in the brain. If you can increase those, it increases your energy and motivation level, so we try to use SSRIs (Selective Serotonin Re-uptake Inhibitor) like Prozac. Prozac is the prototype drug. But now we have Zoloft, Paxil, Effexor, Luvox, and several other drugs that act like the SSRIs as well.

Paul Cheney, M.D.

Paul Cheney, M.D., Ph.D., is one of the most recognized names in CFIDS (Chronic Fatigue Immune Deficiency Syndrome) treatment and research. He has treated over 3,000 patients with CFIDS from 48 states and 15 countries. He is currently Professor of Medicine and Chair of the Nutrition Department at Capitol University of Integrative Medicine in Washington, DC.

Klonopin (generic: clonazepam) (0.5mg): This is a long-acting benzodiazepine, and my most effective drug over the years. It can improve sleep and reduce NMDA receptor mediated neurotoxicity. The injured brain fires at lower stimuli, resulting in increased sensitivity to light and noise, as well as pain amplification. Klonopin and magnesium raise the sensitivity threshold, blocking this brain response, and may be two of the most important treatments for patients. Recommended dosage is two or more tablets at night.

Paradoxically, very small doses (usually a quarter to a half a tablet in the morning and mid-afternoon) improve cognitive function and energy. If the daytime dose is low enough, patients will actually get a lot clearer and think better. If the daytime dose is too high patients will become drowsy. Patients need to adjust their dose for maximum benefit. Adjust the morning dose first, then take the same amount mid-afternoon if needed, then take three to four times the morning dose at bedtime. Consider doubling the dose during severe relapses.

Doxepin Elixir (10mg/ml): At low doses, this tricyclic antidepressant acts as a very potent antihistamine and immune modulator. I suspect it's the most powerful antihistamine known to man and gets into the central nervous system. I think it adjusts the histamine receptors, which are the ‘grand maestro’ of the central nervous system, and down regulates it, which is beneficial. It acts synergistically with Klonopin for sleep, and may improve pain. Patients are very sensitive to Doxepin, which can cause morning fog and fatigue if the dose is too high (5 to 10 mg. or higher). I recommend starting at two drops a night and advancing for sleep improvement vs. morning fog, up to half a cc. Elavil may prove more beneficial for some (10 to 75 mg at bedtime).

Mark Pellegrino, M.D.

Mark J. Pellegrino, M.D., is Board Certified in Physical Medicine and Rehabilitation and Electrodiagnostic Medicine, and is one of the nation’s leading experts on fibromyalgia. Dr. Pellegrino is the author of numerous books and articles about fibromyalgia, and despite having the disease himself, he maintains an active medical practice with over 10,000 patients cared for. He was recently named in “Best Doctors in America.”

Various medicines can treat insomnia, including analgesics, antidepressants, and muscle relaxants. True sleep modifiers include benzodiazepines like Restoril and the hypnotic non-benzodiazepines such as Ambien. The most common reported concern about using sleep modifiers, especially benzodiazepams, is the habit-forming potential. Ambien is reported to be less habit-forming, but can cause rebound insomnia when it’s stopped. Sonata is a newer sleep modifier that is not habit forming, and doesn’t cause rebound insomnia.

Sometimes sleep modifiers are prescribed in short intervals only.
I have found that sleep modifiers improve deep sleep, and particularly improve the morning perception of a good night’s sleep. This improved sleep can carry over into a better day. Sleep modifiers are short-acting medicines, so they work during the night and are usually eliminated from the body by morning, hence the low chance of a morning hangover. Some people report nightmares with these medicines, but usually these medicines are “silent,” that is, one doesn’t realize any medicine was taken, other than knowing that sleep was better.

Jacob Teitelbaum, M.D.

Jacob Teitelbaum, M.D., is the renowned author of “From Fatigued to Fantastic,” one of the premier texts on treating Chronic Fatigue Syndrome and fibromyalgia, as well as the editor of a newsletter by the same name. He remains at the forefront of research and treatment for both CFS and FM.

Valerian is a mild sleep aid that has the interesting effect of calming people when they are anxious, while at the same time acting as a stimulant when people are fatigued. Although not strong enough by itself to normalize sleep in the early stages of treating CFS and FM, it decreases the amount of sleep medication needed. When symptoms have been resolved for six months and sleep medications are weaned off, some patients like to continue using it to ensure good sleep. Although used as a flavoring in food processing, I would avoid using Valerian during pregnancy. Valerian interacts well with other sleep medications and can also be taken with Melatonin 3/10 mg at night.

Sleeping aids for fibromyalgia: You can try these in the order listed or as you prefer based on your history. Adjust dose as needed to get 7-8 hours of solid sleep without waking or hangover. No going to the bathroom if you wake up unless you still have to go 10 minutes later. Mixing low doses of several treatments is more likely to help you sleep without a hangover than a high dose of 1 medication. You can take up to the maximum dose of all checked off treatments simultaneously.

Do not drive if you have next day sedation. If you're not sleeping 7-8 hours a night without waking on the checked off treatments, do not wait until your next appointment to contact your physician! Ambien, Klonopin, Xanax and Soma are considered potentially addictive -I've never seen this happen though, with the recommended dosing below. If you have next-day sedation, try taking the medications (except the Ambien) a few hours before bedtime. The antidepressants (e.g., Prozac/Paxil) can improve sleep a lot after six weeks.

Taking your Magnesium and/or Calcium at night also can help sleep.
Ambien (zolpidem): 10 mg – ½ to 1 at bedtime. If you tend to wake during the night, leave an extra 1/2 to 1 tablet at bedside and you can take it as needed to help you sleep through the night.

Desyrel (trazodone): 50mg – ½ to 6 at bedtime. Although sedating, it can be used (50-250mg at a time) for anxiety. Do not take over 450mg a day (or 150mg a day if on other antidepressants).

Passion Flower (Passiflora): 100 to 200mg at night. This is also good for anxiety during the day.

Klonopin (clonazepam): ½ mg – begin slowly and work your way up as sedation allows. Take ½ tablet at bedtime increasing up to 6 tablets at bedtime as needed. Can be effective for sleep, pain and Restless Legs.
Melatonin: 3/10 mg -1 at bedtime. Don't use a higher dose, unless you find it to be more effective (3/10mg is usually as effective as 5mg- and may be safer).

Doxylamine (Unisom For Sleep): 25 mg at night (an antihistamine).
Soma (carisprodol): ½ to 1 at bedtime. This is very good if pain is severe.
Flexeril (cyclobenzaprine): 10 mg- ½ to 2 at bedtime. Muscle relaxant – can cause dry mouth.

Kava Kava: 30% extract -250mg capsules -1 to 3 capsules at night (if a rash develops add a B-complex at night -and stop/decrease the dose/frequency of use. If the rash persists, see your family doctor). 3
5 HTP (5 Hydroxytryptophan): 100 to 400mg at night. Naturally stimulates Serotonin.

Remeron (mirtazapine): 15mg -1 to 3 tablets at bedtime (especially helpful if you feel like you're "hibernating" during the day).

Elavil (amitriptyline): 10 mg- ½ to 5 tablets at bedtime. May cause weight gain or dry mouth. Good for nerve pain and vulvadynia.

Xanax (alprazolam): ½ mg – ½ to 4 tablets at bedtime. This is short-acting and gives a good 3 to 5 hours sleep with less hangover in the morning.
Sinemet 10/100: 1 at 6 to 9PM each evening for Restless Leg Syndrome.

Derek Enlander, M.D.

Derek Enlander, M.D., is originally from Belfast, Northern Ireland, and is Physician-in-Waiting to the British Royal Family and to several members of the British government during their visits to New York. He is presently in private practice in New York where he sees CFS and FM patients, is on the faculty of a major New York Medical School and serves as President of the Israel Medical Research Foundation.

Good, deep, refreshing sleep is a major key to helping other symptoms of CFS/FM. Most patients have sleep disturbances to their normal cycle. This includes falling asleep, staying asleep, and quality of that sleep. Sleep studies may be beneficial to determine sleep apnea, etc. For instance I treat patients with sleep apnea with extreme caution regarding any type of sleep medication. If the patient’s breathing became obstructed or disrupted, a sleep medication could potentially worsen the condition.

I prescribe various medications and treatment plans to help improve sleep. I start the sleep adjustment with the least provocative substance that will not be habit- forming, diphenylhydramine. If that is not effective, I may use an older drug like Trazodone (deseryl) to help establish a more stabilized pattern of sleep. Or I may use drugs such as ambien, sonata, klonopin, flexeril, zanaflex and others. I am cautious over long-term use of certain drugs due to their addictive or dependent qualities and will short term swap medication to lessen the habit effect.

I often caution patients about using alternative methods or over the counter sleep aids. I am not opposed to all such substances [alternative methods], but I feel strongly that as your doctor I need to know ALL medicines/substances you are taking as there can easily be a cross reaction and damage to the body can occur. Substances bought over the counter for sleep and other symptoms can in fact provide the opposite effects.

I may also prescribe a muscle-relaxant helping relax the muscles to further better sleep. I try to help the patient establish a routine that will aid in establishing a sleep goal.HW

Source: Pro Health's HEALTHwatch newsletter. (c) 2002 Pro Health, Inc.

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4 thoughts on “Top Doctors on Sleep: What the Experts Recommend for CFS & FM Patients”

  1. LifeIsSweet says:

    I’m stunned and distressed by the doctors’ universal recommendation of benzodiazepines. NEVER take benzodiazepines for sleep. Just don’t go there. They will lead to dependence and horrific anxiety if they are used regularly. Not one doctor recommended Cognitive Behavioral Therapy (for insomnia), which should be the first thing to try. It makes me want to cry that these doctors are so ill-informed.

    1. atl0774 says:

      It is simply not fair to those of us with chronic, debilitating insomnia to say that you shouldn’t use benzodiazepines for sleep. I have gone through two sets of cognitive behavioral therapy (CBT) for sleep, and I was never able to get the 7-8 hours of sleep I need most nights of the week. Sleep deprivation is a part of that therapy, and it does nothing for those of us with FMS/CFS. One thing I have learned is that Fibromyalgia is NOT the result of a mood disorder such as anxiety or depression, which are treated with CBT. The best thing is to find a good psychiatrist who knows his meds and can regularly meet with you to switch them around so as to avoid tolerance.

    2. hbg007 says:

      I’m a psychotherapist and even I must admit that CBT often has only modest benefit for people suffering from insomnia and/or chronic pain. I agree benzodiazepines probably should not be used as a first line treatment for insomnia, they should not be ruled out for people who have not found relief with other medications.

    3. accidentallyaddicted says:

      I was prescribed Xanax .25 mg. as a sleep aid. Within a year or two my prescribed dose went up to 3 mg. per 24 hours. After moving and changing doctors 2-3 times my prescription stayed at 3 mg. for several years. Unbeknownst to me I had become tolerant, dependent and as years went by addicted to Xanax. It took me a long time and quite a bit of online research to realize that I was addicted to benzodiazepines and experiencing what is known as “inter-dose withdrawal symptoms” which included more anxiety, fear, pain, insomnia, severe headaches, heart palpitations and super pink / red flushing of my face and neck.
      After 10 years being prescribed benzodiazepines I stopped “cold turkey” by using Kava Kava and basically going through a horribly scary and super painful 30+ days until my body adjusted. I couldn’t work, drive, sleep, walk, or think straight. I had a difficult time finding words and couldn’t even spell correctly. It was pure terror and potentially fatal and I would never recommend that to anyone. Many doctors & experts believe the two most dangerous (and potentially life threatening) withdrawals are from alcohol and benzodiazepines.
      That being stated, not everyone is as receptive as some individuals are to benzos. As I understand they work on some of the same GABA receptors as alcohol and I do believe people who have any issues with alcohol should really research benzos and only take them at the advice of a VERY knowledgeable & super experienced doctor. Under the care of a physician who has a great deal of experience benzodiazepines are excellent to control panic attacks, anxiety, help people fall & stay asleep and to reduce the symptoms of alcohol withdrawal. It is of the utmost importance to be aware of the risks of tolerance, dependence and addiction to benzodiazepines for the doctor as well as the patient whenever using benzodiazepines for any reason. I hope what I have learned will help someone else to make a well informed choice 🙂

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