Resource Dr. Teitelbaum on Maximizing Use of Sleep Drugs

A program for better sleep using sleep drugs

  1. Cort

    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

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  2. bettersoon

    bettersoon Member

    Agreed! That's imperative!
    Who Me? and Strike me lucky like this.
  3. Who Me?

    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
    bettersoon likes this.
  4. Who Me?

    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.
  5. Onslow

    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.
  6. Who Me?

    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.
    Strike me lucky likes this.
  7. Onslow

    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.
  8. Who Me?

    Who Me? Well-Known Member

    Thanks I'll look around. This is the only thing I can find so far.
  9. Who Me?

    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.
    Veet likes this.
  10. Who Me?

    Who Me? Well-Known Member

    @Strike me lucky found this but nothing about sleep initiators and sleep sustainers

  11. Onslow

    Onslow Active Member

    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".
  12. Who Me?

    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.

    "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.
    Last edited: Jul 21, 2016
  13. Onslow

    Onslow Active Member

    By temporary I meant reversible. I didn't mean it lasts a day or two. It may last a year, or 10 years.

    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.
  14. Onslow

    Onslow Active Member

    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).

    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:

    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.

    Lunesta is perhaps your best option, as it doesn't (appear to) develop a 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.
    Last edited: Jul 21, 2016
  15. Who Me?

    Who Me? Well-Known Member

    This is not true for me. Mental activity is even more exhausting for me than physical activity.

    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.

    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.

    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.

    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.
    garnet10, Hope and Strike me lucky like this.
  16. Who Me?

    Who Me? Well-Known Member

    my bolding
    Last edited: Jul 21, 2016
  17. Onslow

    Onslow Active Member

    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.

    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.

    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.
  18. Onslow

    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.
  19. bobby

    bobby Well-Known 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! :(
    Who Me? likes this.
  20. Onslow

    Onslow Active Member

    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.