"please keep me updated about oximeters "
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Fascinating Interview on Chronic Fatigue Syndrome and Fibromyalgia
Sorry, but I neglected to let SleepGuide know about Tuesday night's interview (9/15) with Dr. Jacob Teitelbaum, one of the pioneers in the education, research and treatment of people with chronic fatigue syndrome. We covered considerable material on the relationship between chronic fatigue syndrome and OSA. We also talked about why some people who are fully compliant with their sleep apnea treatment and are still tired.
Here's the link to the mp3 recording. It's time limited for only a few days.
Here's the link to the mp3 recording. It's time limited for only a few days.
Views: 25
Replies to This Discussion
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Permalink Reply by susan mccord on
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I'm very disappointed to report that I missed the teleconference tonight. I lost my cell phone (again) today, and still haven't found it. I didn't actually connect with the fact that the conference was phone only. When I got online to sign in, I realized I couldn't.
I was totally looking forward to this teleconference--have been registered ever since it was announced. This ongoing fatigue I have commands a lot of my attention, and I'm certain I would have benefitted from hearing you guys talk about it.
Was just talking with Jackie on SG re: 'the fog', misplacing things, etc. How long before I can hope for some clearing of thought process? It interferes with my life in some significant ways.....
Again, I'm really sorry to have missed tonight's teleconference. The last one was really good. I was looking forward to this one.
Susan McCord
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Permalink Reply by Tim on
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Thank you for the link, I will be able to listen to it tomorrow on the way to work.. I am beginning to think that the "treatments" for FMS are worse than the FMS itself. At least Lyrica did nothing at all; Cymbalta worked for a few weeks and then stopped working; the short time of the relief wasn't worth the withdrawal . I just started taking amitriptyline and it sounds like it has nasty withdrawal too.
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Tim, I've taken nearly every kind of antidepressant on the planet over a lot of years. I'm having really good success now with Wellbutrin XL. (regular wellbutrin didn't work that well--the XL stuff is extended release). I'm certainly not here to give medical advice--not an MD--but I'm familiar with amitryptiline side effects--a lot of people, including me, have accelerated appetite/weight gain, excessive fatigue, a lot of sedation, etc. It's a good Rx for agitated depression, and it worked for me with MY depression, but the side effects can creep up on you before you know it. Like I said prior, I'd NEVER give medical advice on here--I'm just sharing what I know in terms of myself and others I know who take antidepressants.
Susan McCord :-)
Tim said:Thank you for the link, I will be able to listen to it tomorrow on the way to work.. I am beginning to think that the "treatments" for FMS are worse than the FMS itself. At least Lyrica did nothing at all; Cymbalta worked for a few weeks and then stopped working; the short time of the relief wasn't worth the withdrawal . I just started taking amitriptyline and it sounds like it has nasty withdrawal too.
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Thanks Susan,
My rheumatologist explained that amitryptiline may work better for FMS than Cymbalta because it is a scattergun antidepressant; it affects many types of receptors, not just the serotonin and norepinephrine receptors. This scattergun effect also means that there are lots of side effects. This is the last anti-depressant that I will be taking for FMS; it is very sedating and I can see why it would cause weight gain. I will give it a decent trial, but I don't have much faith that it will work, I really wish that Lyrica would have worked because it didn't have any side effects; it had absolutely no effects at all.
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Permalink Reply by Mack D Jones, MD, SAAN on
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I enjoyed hearing Dr Tietelbaum's point of view regarding the cause and treatment of Fibromyalgia and Chronic Fatigue Syndrome. As a neurologist, I believe that they are both caused by OSA and the first line treatment is an APAP machine. It is well known that the response to PAP is varied, ie, some patients respond by an improvement in there symptoms and others do not.
The assumption is that it you do not respond favorably to PAP treatment within the first few days or weeks, then the cause couldn't possibly be OSA because if it were, the treatment should have gotten rid of the symptoms, right? Wrong! This is where the non neuro educated specialist can miss the boat, so to speak.
In my opinion, the cause of Fibromyalgia and Chronic Fatigue Syndrome is an accumulation of white matter or axonal strokes involving critical areas of the brain, (ie, hypothalamus, prefrontal and sensory cortex, for example) created by long standing, repeated obstructions (hypoxemia and other complications). These areas of brain damage may or may not recover with PAP treatment right away. The speed of stroke recovery varies considerably (from none to complete), depending on many factors. PAP must be continued and where necessary adjunctive therapies added. In time, with brain recovery, the adjunctive therapies can be selectively withdrawn. (See my recently published book, "Deadly Sleep" for more details).
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I have been on CPAP for ~15 years and started developing FMS about five years ago; I was "diagnosed" about two and a half years ago. . I am, and have been, 100% compliant with CPAP. I got an autoPAP about three years ago and started measuring my AHI, it has consistently been between 2 and 3, The autoPAP pressure has either been set to my prescribed pressure or within a very narrow range about my prescribed pressure.
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An AHI of zero is the goal. Two to three apneas per hour over years can be deadly according to Dr Barbara Phillips, past president of the NSF. Repeated hypoxia of +/-20 to 120 seconds does a number on every living cell in your body. It's the accumulation of repeated insults that finally catches up with you. An MRI-DTI brain scan, if it were available, would help settle any question as to how much damage OSA has actually been done to central pain reception and control centers.
Regardless of the findings in such a hypothetical study, the treatment remains the same. Avoid apneas when asleep.
Tim said:I have been on CPAP for ~15 years and started developing FMS about five years ago; I was "diagnosed" about two and a half years ago. . I am, and have been, 100% compliant with CPAP. I got an autoPAP about three years ago and started measuring my AHI, it has consistently been between 2 and 3, The autoPAP pressure has either been set to my prescribed pressure or within a very narrow range about my prescribed pressure.
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