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Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
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  1. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Even six hours of sleep, particularly six hours of non-restful sleep, can take it's toll over time.

    As you say, there are thing other than benzos that can be used to help sleep. I am trying a variety of OTC products to help with sleep and have reduced my benzo dose.

    IIRC, Dr. Cheney said that taking a benzo will protect the brain from further damage until the ME is resolved.
    heapsreal likes this.
  2. kelly138

    kelly138

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    the link I posted is one of many lectures / interviews being done by Dr. Steven Park - I have been listening to many of his guests this past year or so -

    here's a link of all the guests he has had - yes the theme is sleep apnea- there is a lot of discussion of anatomical issues too - for example I was bottle fed so my jaws didn't develop fully - I have OSA but also have cranial facial issues and have found many of the talks target my own health problems

    http://doctorstevenpark.com/expert-interviews

    these are doctors (and dentists) who are willing to think outside the box

    What I like about Krakow's talk (and this is the second one I have heard) is he is willing to do things that don't involve prescribing addictive drugs to help the patients. Park is willing to treat the symptoms and not the "numbers" too. NO not everyone can get to one of these docs - wish we all could.

    there has to be a reason why we have worsening physical symptoms - what is triggering them - what can be done to alleviate them or slow down this worsening of them

    no the average person can't find treatment from their GP - I had to take control of my OSA treatment long ago and I know my treatment isn't optimal by any mean.

    What I am finding interesting is as I am gradually adding the methylation supplements is that my sleep data is also improving. Whether or not it will continue I don't know. My data includes my APAP data (air flow graphs with interpretations) as well as a pulse ox worn all night. I still have many awakenings and difficulty falling asleep but the data is much better than a month ago; not great but better.
  3. kelly138

    kelly138

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    I am not familiar this;

    my question would be - what about the person who is addicted to the benzo? How much protection can there be when the person is taking a dose of exactly what they are addicted to and making the GABA receptors harder to heal?
  4. arx

    arx Senior Member

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    ^read the pr article about klonopin..its mentioned there about klonopin and neuro protection.. its shared somewhere in this thread i think
  5. kelly138

    kelly138

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    apnea is cessation of breath - sleep apnea is while sleeping - there has to be sleep yes but the sleep isn't measured in the manner we are used to - it is measured by EEG tracings from what I understand

    I have a diagnostic study several years ago; I read the report. They had me asleep almost immediately. Was I? not according to me; I spent 2 hours is a semi-twilight pattern where I was very aware of my surroundings; I didn't consider it sleep they did.

    You might want to look up UARS - upper airway resistance syndrome; I am not an expert on it by any means - it precedes OSA for many people (months or years) - treatment is XPAP. There isn't the full 10 second stoppages of breathing required for an apnea or the full 10 second decreases in airflow with O2 sat drops required for a hypoapnea. But the net result is excessive daytime fatigue and more.

    I think there is more research that can be done using these non drug approaches.
  6. kelly138

    kelly138

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    Thank you

    I will look for it tomorrow

    I haven't found my way around this forum yet.
  7. kelly138

    kelly138

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    this one?

    http://phoenixrising.me/archives/12200
  8. arx

    arx Senior Member

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  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    The sleep study i was in i only had to short bursts of sleep lasting 10-15mins, definately no twilight sleep, but they stated it was enough to diagnose sleep apnea for which i tested neg too.

    The doctor in link just doesnt sound right to me, he sounds like he is trying to sell something, something doesnt sit right as he is pushing every cause of insomnia towards the machine he is mentioning. He states that he listens to his patients and an example is when a patient comes into him stating that her sleep problems are breathing related which he believes her but then others who dont think their insomnia is breathing related he doesnt believe. Im just skeptical as he is making it sound like a cure for all sleep problems, im sure it helps people but im getting a bad vibe, sorry. He just sounds like a psychologist putting his 'spin' on things.

    He sounds alot like a doctor i saw once for my insomnia and no matter what i said he just kept pushing it back to sleep apnea, he wouldnt even consider cfs. then when i went for my sleep study they told me to sleep on my back so they could catch the sleep apnea even though i told them i never sleep on my back, and then they never picked up any apneas, probably because i didnt sleep much but no different to any other day of the week then.

    There was even a part of the link where the doctor said if a person had insomnia but the numbers measured didnt indicate sleep apnea or UARS he still recommended the sleep machine as it would solve the problem.

    I think what this doc is saying may help some and i hope it helps u but im getting a bad vibe, again, sorry Maybe its my bad experience with these sleep doctors??
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i think cheney is saying cfs/me is what is damaging the brain/sleep and not gaba receptors being damaged. if one wasnt sleeping well prior to sleep meds then there are other ongoing issues causing this, not neccesarily sleep meds damaging gaba receptors. Doctors have to find whats causing the sleep problems, me/cfs on its own can be the cause of the sleep problems. most sleep docs dont recognise cfs/me so they arent going to say its the cause of the sleep problems but may get a diagnosis of depression as a cause of sleep problems.

    There are many causes of sleep dysfunction, but cfs/me itself is also a cause of sleep dysfunction, just not recognised yet as the psychobabblers have convinced many docs we are nut cases.,
  11. kelly138

    kelly138

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    I have seen plenty of poor docs myself - they have done more harm than good - they would have done less harm if they hadn't done anything.

    Krakow is selling his service; I am not suggesting flying to ABQ to see him by any means. Just be open on other ideas as it will be these docs who are promoting other ideas which will be the ones that help us. Unfortunately many of us (perhaps most) are unable to determine on our own if these docs are just con artist out to fleece us or are really out to help us.

    Did you look up UARS? My understanding is it is a fairly "new" diagnosis and not all sleep labs have staff capable of making it yet and insurance won't necessarily cover a CPAP for it at least here in the states - I have heard in OZ CPAP isn't covered anyhow.

    If using an XPAP lets me sleep better, makes me feel better the next day (that took many months to reach it) and doesn't fill me with addictive drugs, I am all for using it.
    heapsreal likes this.
  12. kelly138

    kelly138

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    IMO - damage to GABA receptors is pretty serious- benzos do cause long term brain damage even though most medical providers will not admit to it and taking further doses of benzos/z-drugs makes it worse - even with a drug holiday
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Im not sure if they test it (UARS) in australia but have read about it in dr teitelbaums book a few years ago.
    I have had a sleep study done which didnt show anything but i believe for me it is a dysfunctional cortisol rhthym thats my issue, since i have been treating it my sleep has improved even though i have lowered my sleeping doses, from a 1-2 zopiclone to a 1/2-1. My aim is to not use any meds for sleep but until i get everything sorted, these meds help me to fit into the normal world etc to work. ALso i think my general improvement on valcyte is also helping. 20yrs plus of shift work doesnt help me either.

    I think you bring up some good points and everything needs to be ruled out first, breathing disorders seem easy enough to treat if u have one but i also think there are better ways to use sleeping pills that help one avoid side effects. Most people seem to get into trouble with sleep meds when they start increasing the doses but alot of docs just dont seem to care. Using a benzo equivilancy chart, if someone is needing >10mg of equivilant to valium then they need to start backing off some how, if 10mg doesnt help then change meds or to a different drug class altogether. On some of the benzo withdrawal sites I cant undertsand how people get prescribed the doses of benzo's they take a day, some upto 50-100mg valium or 10-15mg klonopin, i think its people that are using these big doses that end up with alot of problems. I also think what could help people avoid alot of these problems is docs checking everything breathing problems being one as well as adrenal hormones and rhthyms, im sure there are other things that also dysrupt sleep. If one needs sleep meds then there is a limit dose one uses.

    thats what i think and in general sleep is poorly treated by docs.

    cheers!!
  14. kelly138

    kelly138

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    the benzos and zdrugs are counter indicated if you have untreated OSA - do doctors screen first for OSA before they script them? now there is a suggestion of limiting how many doses one should take but from what I recall, when Ambien CR was first approved it was approved for long term use not the 10 days or so now suggested.

    I thought the zolpedim was a "savior" for years - I put off trying to get off it - I have since learned how bad it really was and how much more damage my body has because of it- my GABA receptors are very damaged - they have healed some since I have been off now for over 2 years but still they are damaged and I don't expect to every fully recover as I have never fully recovered from the benzos I was given 35 years ago.

    I am not going to say taking the meds was my only medical problem; I have had toxic exposures several times landing up in the hospital ICU for 5 days one of them. I elected not to go that route 5 years ago expecting to die here at home from liver failure; the liver pain was very bad and I have lived all my life with liver problems so I knew how bad it was.

    I thought I would either die or recover fairly fully (never fully is what I had learned over time). It is now 5 years later and I have made progress on recovery this past year or so with diet changes and getting off as many Rx meds as possible. I am hoping this methylation will further that recovery.

    Benzos are NOT my friend.
  15. Nielk

    Nielk

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    Hi kelly138,

    I'm sorry to hear about all your problems. This is not an easy road for us. do you think that your liver problem is due to the benzo-z-drugs or is it an unrelated problem?
  16. kelly138

    kelly138

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    original liver problems were when I was a toddler - benzos weren't around then

    did benzo use make it better? probably not-

    I have learned over the years to live with the liver problems - I have had to watch what I eat and can't drink often without aggravating it - I should note that I didn't have to do with prior to my first benzo dose but have had to since. Was it the reason why? hard to know as I could have had these problems anyhow. I showed signed of MCS years before and there could have been liver problems I was not recognizing yet back then.

    some of the meds I have been given (for example depokote (edited to depakene) about 30 years ago for headaches which were benzo withdrawal related) have increased the liver and gall bladder problems - it is just that particular med sticks out above the rest as far as making the liver / gall bladder problems worse (I had no known gall bladder prior to taking it - I did afterwards)

    did benzos or zolpidem contribute to the liver problems 5 years ago - indirectly - as my liver was unable to handle the toxic exposure - could I have handled it if I had never taken a benzo or a z-drug? hard to know based on my history

    I hope this helps answer your question
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  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    what sort of dosages were u using of sleep meds?

    I agree that sleep breathing disorders need to be ruled out first. i would like to see docs do 4 times a day saliva cortisol testing as well as melatonin testing and maybe other neurotransmitters that affect sleep/wake cycles.

    I think for some especially those trying to work and need a certain amount of sleep to be able to function safely, long term sleep meds are necessary but the dose per night should be limited. In my line of work i have seen many people addicted to many different drugs so when i first starting taking sleep medicines i limited myself to a set low dosage, if that didnt work then i didnt sleep but wasnt going to take more as it just seems to end up in a viscious cycle of ever increasing doses. I just think there has to be smarter was to use them. it would also be nice if they did more research into sleep medicine and try and develop medications with less side effects etc etc

    I have been able to greatly improve my sleep through different supplements by trying to manipulate different hormones and neurotransmitters. I think because i have been able to keep my sleep med doses low, this has allowed me to be able to cross over much easier to other forms of treatment without problems related to benzo withdrawal etc

    So Kelly how did u get on benzo's? Did u cross over to valium and do a slow taper or something else??
  18. kelly138

    kelly138

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    the benzos were old history - over 30 years ago -

    the z drugs were more recent and I was reassured they didn't act like benzos - didn't work the same way at all - total lies - I knew not to ever take a benzo again based on my experiences 30 years ago

    taking 20 mg zolpidem wasn't unusual - wasn't where I started however - and I slowly tapered off them - no switch to a benzo

    I am not going to say I didn't take benzos while on zolpidem - I was given them for heart arrhythmia as I couldn't take the other suggested meds - I decided to put up with the heart problems instead
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    is your sleep still crappy or have u found other ways to help sleep as well as a cpap machine or similar?
  20. kelly138

    kelly138

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    my sleep quality varies - there is a long history of sleep problems so I didn't expect miracles

    I have many awakenings - I have times I can't get back to sleep - the CPAP has helped but then I also was diagnosed with Obstructive Sleep Apnea many pounds back.

    Will I ever have a night I will go to bed, fall asleep fast, not wake up for hours? I have no idea. I couldn't do this on zolpidem after the first month of so on it without increasing the dosage and I couldn't keep increasing the dose.

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