Dr. Teitelbaum on Maximizing Use of Sleep Drugs

Resource Dr. Teitelbaum on Maximizing Use of Sleep Drugs

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Cort submitted a new resource:

Dr. Teitelbaum on Maximizing Use of Sleep Drugs - A program for better sleep using sleep drugs

Dr. Teitelbaum believes that getting a solid eight to ten hours of restful sleep is absolutely critical to the healing process in ME/CFS and may require taking as many as five or six different sleep aids.

Since most of the side effects (and fewer of the benefits) come at higher doses, he believes patients can maximize their benefits by taking small amounts of several sleep aids at once....
Read more about this resource...
 

Who Me?

Well-Known Member
Although Teitlebaum is right about sleep it's just not that easy.

I can take the same concoction 2 nights in a row and have a completely different outcome.

There are are too many variables to be consistent with sleep. Did I sleep the night before? Did I do something that caused me to be tired but wired? Are the neighbors blasting music?

His SHINE protocol just isn't as easy as he makes it seem. I'd never get past the S. lol
 

Who Me?

Well-Known Member
@Strike me lucky Have you ever anyone else talking about the sleep initiator sleep sustainer protocol? I want something in writing for my doc. There is lots of discussion amongst us but that's not going to fly with a doc.
 

Onslow

Active Member
From my own experience, yes sleep is very important, but I'm not sure if sleep aids are really the way to go. An upset sleep cycle is really just another aspect of the disruption in hormone rhythms that tends to happen in CFS. The cure for that is sufficient non-stressful activity during the day, along with sunlight in the morning. That will also help CFS in general, so it's a kind of vicious circle. Obviously care needs to be taken not to overdo it, as that can make things worse (recent research suggests that too much activity -- especially late in the day -- actually causes the body clock to shift ahead in CFS patients).

Has anyone tried using melatonin to reset their sleep cycle? I never knew about melatonin when I had CFS, so I'm not sure if it would help. However, I do still occasionally use melatonin to reset my sleep cycle in autumn (when it sometimes tends to get screwed up), and it seems helpful.
 

Who Me?

Well-Known Member
@Onslow if you had my sleep issues you wouldn't being saying sleep aids aren't the way to go. And your solution is a real oversimplication of the sleep issues I have.

I absolutely will not sleep without several things to knock me out, keep me out and put me back to sleep when I wake in the middle of the night. I'm not exaggerating. I will not sleep. Over 20+ years of being sick I have tried pretty much everything there is and as my disease evolves and F's with my brain even more, I adapt.

Melatonin, some sunlight and no stress is not the answer for me or for @Strike me lucky who has many of the same sleep problems I have.

I asked for documentation on using sleep initiators and sustainers. I'm not interested in suggestions of what will help me sleep. Been there done that for 20 years.
 

Onslow

Active Member
Well, I had zero hours sleep, which is what prompted me to look for solutions. I'm not really a fan of "dick measuring" things like this, but I'm pretty sure you can't get worse than that :)

>Melatonin, some sunlight and no stress is not the answer

I think the key is activity during the day. That is what really normalises the sleep cycle, and is also helpful with CFS in general.

I still maintain that you can sleep without sleep aids, and that is by far the best (and in fact *only*) long-term solution. However you're welcome to disagree with me, and I won't try to convince you otherwise.
 

Who Me?

Well-Known Member
I'm housebound and sofa bound. Exactly what activity do you propose? You see for me, any activity is stimulating and Amps me making sleep worse.

I'm Glad it worked for you but after 20 years i'm pretty sure I know what will and will not work for me.

Oh and not having a pissing contest. You just can't make a blanket statement like that. One size don't not fit all. Strike me explained it below.
 

Who Me?

Well-Known Member
@Strike me lucky found this but nothing about sleep initiators and sleep sustainers

.
Cycling Sleep Medications to Avoid Tolerance
Developing drug tolerance is a significant concern for many people who need long-term pharmacologic sleep support. Some experts suggest avoiding drug tolerance by alternating the type of sleeping medication used. Here is a potential prescription drug schedule to treat chronic insomnia for a person who has never taken prescription sleeping pills:

  1. Valium, 2.5 mg, taken only at bedtime for 30 days
  2. During the next 30-day cycle, 5 to 10 mg Ambien® taken only at bedtime
  3. During the next 30-day cycle, 1 to 3 mg Klonopin® taken only at bedtime
At some point, patients may find that they do better by taking Valium® one night, Ambien® the next night, and Klonopin® or Lunesta® the third night. The drug Sonata® in a 5 to 10 mg dose provides about 5 hours of sleep and can be helpful on occasions when only a limited amount of sleep time is available. If heavy alcohol is consumed, these types of drugs should be avoided on the same night.

A person with chronic insomnia must develop a close relationship with a physician who understands that some people need sleep medications on a routine basis or their lives will be miserable and they will be at a higher risk of contracting a serious degenerative disease.
 

Onslow

Active Member
Theres a lot of contradiction in what you say. How does one with moderate to severe cfsme keep their activity high enough to induce sleep. Usually the opposite happens as one becomes tired and wired. Increased activity can increase inflammatory cytokines and lack of sleep also increases the inflammation.

I have tried almost every natural treatment and combination of and they have done very little. Even when cfsme has been mild and activity and sunlight have been increased.

Melatonin by itself i have found does nothing by itself but with sleep meds can help sleep cycle some but definitely not earth shattering.

I think theres a subgroup of cfsme who have damage done to their hypothalamus from infections etc and one of its functions is to regulate sleep.

If one doesnt need sleep medsor gets by with things like valerian and melatonin, then they probably dont have the same degree of damage done to their sleep centre in the hypothalamus.

The only inhibitory neurotransmitter we have are gaba receptors. Other sedating meds work by blooking neurotransmitters that keep one awake etc like histamine or certain serotonin receptors. In the end the only real off button we have is controlled by gaba receptors??
All CFS patients seem to have a disfunctional hypothalamus (I certainly did). However it doesn't seem to be "damage" as such, more like temporary, reversible functional disfunction.

As for what to do to recover? I don't have all the answers, but in a nutshell it seems to be some combination of reducing negative stress and gradually increasing positive activities. (Or at least, that appears to be part of the answer). It doesn't require a significant amount of energy to do this, and definitely shouldn't be something that gets you "amped".
 

Who Me?

Well-Known Member
What exactly are you basing your idea on? I've never heard that "all CFS patients have hypothalmus dysfunction." As I said I'm glad what you're doing works for you but it is not the answer for me.

Edit: 20 yrs ago everyone thought the HPA axis was the problem. That was way before they knew about viruses, infections, inflammation, mitochondria etc. sure there are people still with that issue but I don't think now that all patients have it. This is my own thought on this based on the MECFS convo right now.

Itdoesn't require a significant amount of energy to do this, and definitely shouldn't be something that gets you "amped".
"significant amounts of energy" means different things depending on your level of sickness. I get winded reaching for the remote. @Strike me lucky and I are saying activity amps us. We are both saying without meds we will not sleep. And there are many others like us.

I think either of us, if we had the choice would prefer not to take meds, but given the alternative, which is maybe 2 hours of sleep a night, we have to.
 
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Onslow

Active Member
Temporary dysfunction ??? It may be for you but not for others.
By temporary I meant reversible. I didn't mean it lasts a day or two. It may last a year, or 10 years.

To say reducing stress implies cfsme is sometype of depression anxiety disorder which it isnt.
Stress seems to be a factor in many people's CFS. Most CFS patients have a low stress tolerance...that was certainly the case with me.

Excessive stress causes symptoms such as anxiety, depression, pain, fatigue, and immune/autonomic dysfunction in everyone. In CFS it just happens with much lower levels of stress (and for shorter periods) than in normal people. And anxiety and depression are very common in CFS (at least, when people push themselves), so I don't think it's useful to try to distance CFS from anxiety and depression.
 

Onslow

Active Member
What exactly are you basing your idea on? I've never heard that "all CFS patients have hypothalmus dysfunction."
Research in the past 15 years show that CFS is associated with reduced diurnal cortisol variation, enhanced negative feedback of the HPA axis, and blunted HPA axis responsiveness, indicating HPA axis dysfunction which appears to be clinically relevant as it is associated with symptoms, disability and response to treatment (Papadopoulos, 2011).

"significant amounts of energy" means different things depending on your level of sickness. I get winded reaching for the remote. @Strike me lucky and I are saying activity amps us. We are both saying without meds we will not sleep. And there are many others like us.
I mean: less energy than it takes to reply to reply to my post here. Mental activity is as good as physical, although both are probably ideal.

*EDIT* no matter how low your physical ability is, it's always possible to gradually improve it. See for example:

https://www.theguardian.com/society/2016/feb/15/it-was-like-being-buried-alive-victim-of-chronic-fatigue-syndrome

Obviously it's not the only factor. Mental stress may also be a contributor (perhaps from the illness itself). If that's the case then something like CBT might be helpful.

I think either of us, if we had the choice would prefer not to take meds, but given the alternative, which is maybe 2 hours of sleep a night, we have to.

Lunesta is perhaps your best option, as it doesn't (appear to) develop a tolerance...at least, from the clinical trials I've seen. However I still think the long-term goal should be to try to gradually remove all medications and supplements.
 
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Who Me?

Well-Known Member
I mean: less energy than it takes to reply to reply to my post here. Mental activity is as good as physical, although both are probably ideal.
This is not true for me. Mental activity is even more exhausting for me than physical activity.

*EDIT* no matter how low your physical ability is, it's always possible to gradually improve it. See for example:
Again, no it isn't. One of the criteria for ME, which I have is that no matter what you do you cannot increase your tolerance for exercise. It's called PEM.

Obviously it's not the only factor. Mental stress may also be a contributor (perhaps from the illness itself). If that's the case then something like CBT might be helpful.
WTF? This completely minimizes the physiological cause of our sleep dysfunction and makes it seem like if we control our anxiety and stress we'll sleep. Again, not true.

Lunesta is perhaps your best option, as it doesn't (appear to) develop a tolerance...at least, from the clinical trials I've seen.
People who stop taking Lunesta after long-term use will most likely suffer withdrawal symptoms, such as insomnia and anxiety. Due to these uncomfortable symptoms, overcoming an addiction to Lunesta can be difficult
Any Z drug has the potential for addiction. And if you've ever taken lunesta you know it leaves a disgustingly foul metallic taste in the mouth which is why so many people don't use it.

However I still think the long-term goal should be to try to gradually remove all medications and supplements.
Again I say , I'm glad it works for you but as @Strike me lucky and I have pointed out to you, your ideas will not work for us, and it isn't for lack of trying on our part. As we both said, but which you don't seem to want to listen to, is activity actually wires us up and makes us "Twired" Tired and wired.

You just can't take one theory and say it will work for everyone. If it was that easy we'd all be cured sleeping like babies.
 

Who Me?

Well-Known Member
Patients taking eszopiclone, or any hypnotic agent, may develop dependence and experience withdrawal symptoms when discontinuing use.
http://www.centerwatch.com/drug-information/fda-approved-drugs/drug/877/lunesta-eszopiclone

Over the 6-month study period, adverse events were reported in 81.1% of patients in the eszopiclone group and 70.8% of patients in the placebo group. The most common events in both groups were unpleasant taste, headache, infection, pain, nausea, and pharyngitis. The vast majority of infections (~85%) were related to the common cold, and none resulted in discontinuation from the study. Headache was the only adverse event reported in more than 10% of the patients in both groups. Over the 6-month period, the rate of discontinuation due to adverse events was 12.8% in the eszopiclone group and 7.1% in the placebo group (P < 0.05). The most common reasons were somnolence (2.2% for eszopiclone, 1.5% for placebo), depression (2.0% and 0%), unpleasant taste (1.7% and 0.5%), headache (0% and 2%), asthenia (1.0% and 1.5%), and insomnia (0% and 1.5%).
CONCLUSIONS

The current data suggest that the use of eszopiclone in hospitalized patients offers no distinct advantage over other currently available hypnotics. Like other nonbenzodiazepine agents, eszopiclone has been shown to be efficacious in sleep induction and maintenance, and its pharmacokinetic and pharmacodynamic parameters are similar to those of zolpidem and zaleplon. Dosing should begin at 2 mg for nonelderly patients and may be initiated at or increased to 3 mg if clinically appropriate. However, there are currently no efficacy studies that directly compare eszopiclone with other hypnotic agents, including zolpidem or zaleplon, or with nonpharmacologic treatments. The acquisition cost of eszopiclone is comparable to the cost of zolpidem and zaleplon but much higher than that of older hypnotic agents. Lastly, the distinguishing feature of eszopiclone—approved labeling for long-term use—is not an overriding consideration in the decision to administer this medication to hospitalized patients.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1325284/

my bolding
 
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Onslow

Active Member
Again, no it isn't. One of the criteria for ME, which I have is that no matter what you do you cannot increase your tolerance for exercise. It's called PEM.
Yes, I'm aware of that, and I experienced severe PEM, but now I don't. The trick is to find activities that help with getting rid of PEM, rather than activities that aggravate it.

WTF? This completely minimizes the physiological cause of our sleep dysfunction and makes it seem like if we control our anxiety and stress we'll sleep. Again, not true.
No, it doesn't. The hypothalamus is physiological, and is a big factor in sleep dysfunction, but is highly influenced by stress. For example, animal experiments show that negative psychological stressors suppress the HPA axis, and we know a lot of the pathways through which that happens.

Again I say , I'm glad it works for you but as @Strike me lucky and I have pointed out to you, your ideas will not work for us, and it isn't for lack of trying on our part. As we both said, but which you don't seem to want to listen to, is activity actually wires us up and makes us "Twired" Tired and wired.

You just can't take one theory and say it will work for everyone. If it was that easy we'd all be cured sleeping like babies.
I'm well aware of the "tired but wired", as I experienced it myself. Again, the key is to find activities that don't cause that, as well as dealing with any psychological stressors that may be causing problems. (And that isn't minimising the physiological issues, just taking into account the reality that psychological stress suppress the HPA axis). Please don't say things like "you don't seem to want to listen to", as it's untrue and not helpful. The whole point of me posting here is to listen to people and offer suggestions.
 

Onslow

Active Member
I'm not sure why you posted that, as I don't disagree with you. All sleep medications have side-effects, which is why I don't think they're a good idea except perhaps in the short term. That article doesn't actually show any evidence that a tolerance develops to Lunesta, and the study that looked into it found there is no tolerance. However the study was funded by the drug company, and I think it's plausible that it could cause tolerance because any medication that screws around with neurotransmitters is likely to cause tolerance.
 

bobby

Well-Known Member
in a nutshell it seems to be some combination of reducing negative stress and gradually increasing positive activities. (Or at least, that appears to be part of the answer). It doesn't require a significant amount of energy to do this, and definitely shouldn't be something that gets you "amped".
hey @Onslow not here to start an argument, was just a bit surprised to see you saying these things about increasing positive activities, sunlight etc. and that it shouldn't get you amped. I'm wondering if you know that there are PWME who get amped from the littlest things like the sound of their own breathing, or the sound of their own heartbeat, or the pressure of their own bodies against the mattress? this doesn't involve any negative or anxiety related thoughts, it's just utter physiological hypersensitivity to sound, touch, etc.

I'm glad you've found something that works for you, but I hope you realize there are people who are physically trapped in a vicious cycle they can't get out of. If sleep or pain medication is a way to get them to a comfortable place, I am all for it. We suffer enough as it is! :(
 

Onslow

Active Member
hey @Onslow not here to start an argument, was just a bit surprised to see you saying these things about increasing positive activities, sunlight etc. and that it shouldn't get you amped. I'm wondering if you know that there are PWME who get amped from the littlest things like the sound of their own breathing, or the sound of their own heartbeat, or the pressure of their own bodies against the mattress? this doesn't involve any negative or anxiety related thoughts, it's just utter physiological hypersensitivity to sound, touch, etc.

I'm glad you've found something that works for you, but I hope you realize there are people who are physically trapped in a vicious cycle they can't get out of. If sleep or pain medication is a way to get them to a comfortable place, I am all for it. We suffer enough as it is! :(
Yes, I'm aware of that, having experienced hypersensitivity to sound when I had CFS. I still think that psychological factors are still important in dealing with that vicious cycle. There is generally a lot of anger, fear and other negative emotions, especially in severe CFS, and dealing with those seems to be helpful in recovering. I agree that sleep/pain medications can be helpful. I'm just saying that it isn't really a long-term solution.
 

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