Guest guest Posted November 11, 2005 Report Share Posted November 11, 2005 I have been on this list since the beginning but don't post that much. Yes I have CFS. My life has been one big fatigue. Cannot write all my history, would be too long. I was tested at a hospital for sleep apnea 5 years ago and received my c-pap with vaporizer. They said it would help my constant migraines and give me some energy but didn't help much along with all the other things that I have tried. Recently ask my PCP for oxygen was going to use it for something else (won't go into that) when the people at the oxygen place found out I had a c-pap, they were very aggresive and said that perhaps I need oxygen at night, I thought this was far fetched but they insisted and they gave me this oxygen meter to wear all night and to my surprise my oxygen level was low enough to qualify for insurance. Think for at least 5 minutes my oxygen was below 80%. I stopped using the c-pap and have only been using the oxygen because I am very sensitive to EMF's (most people don't believe this, especially Drs.)and there was two electric machines at my bedside. Another Dr. I went to today said that I should go back to the c-pap with the oxygen so I will and maybe I won't be so groggy tomorrow, will see. This oxygen is supplied without pressure, using nasal cannula, when not connected to my CPAP machine? Have a large tank of oxygen in my bedroom. About the sleep study test I really believe that I have Narcolepsy and have thought so for years. This runs in the family. My son was diagnosed with narcolepsy and takes Ritalin several times a day which isn't a good thing to be on speed for the rest of your life. I told the Dr. that I thought that I had Narcolepsy, maybe that's why I wasn't diagnosed with it. I have some Ritalin that I used to take. My son can only get a month's supply at a time. The wreck only happened 2 weeks ago. I have always had a high pulse rate but the stress probably made it go higher. Want to raise my Gluthathione levels I have 50 mg. Reduced Glutathione sublingual tablets from Source Naturals but I only take one a day. I can't take so many things. Do you think that these would help if I took more? Thanks, H. From: " rvankonynen " <richvank@...> Subject: Re: CFSMExperimental: For Richr: glutathione & Oxygen Hi, . I'm sorry about the wreck and that you feel so bad. I don't think I know enough about your situation to be able to offer well-based suggestions. What was the sequence of events in all of this? Since you're on this list, I presume you have chronic fatigue syndrome, is that right? Did you have sleep apnea before the wreck, or was that a result of it? How about the rapid heart rate? Did you have that before the wreck? Was the sleep apnea diagnosed with a sleep lab study? If so, is it obstructive or central sleep apnea? Did the doctor rule out narcolepsy? You said you've been prescribed oxygen for use at night, but it hasn't helped your daytime alertness. Is this oxygen supplied without pressure, using a normal vented oxygen mask or nasal cannula, or do you have a CPAP machine? Rich > > Hi Rich and all, > I get the digest and it is really hard to post to the list. I recently had a wreck that totaled by car and I have a compression of the 8th thoracic v. Well my problem is I want to sleep so much of the time. I have access to methyl pred and thinking about taking that it to up my energy level. The only think is my pulse is already high (95-100) most of the time. I have sleep apnea and have been prescribed oxygen at night, I was told that it would make me feel more alert during the day but that hasn't happened. Do you or anyone know of side effects of supplemental oxygen? About the glutathione, I am sure I am low, tried taking some of the powders some time ago but couldn't tolerate them. Now I have 50 mg. Reduced Glutathione sublingual tablets from Source Naturals but I only take one a day. > Any suggestions, I really feel lousey. > Thanks, > H. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2005 Report Share Posted November 13, 2005 Hi, . Thanks for the additional information. It sounds as though you have some very challenging issues. Concerning narcolepsy, you probably already know quite a bit about the symptoms, since it runs in your family. Nevertheless, I will review them, so that you can perhaps get a better idea about whether you might indeed have it yourself. Full-blown narcolepsy has four characterisitic symptoms: narcolepsy, cataplexy, hypnagogic hallucinations, and sleep paralysis. Milder forms may have only part of this set of symptoms. Narcolepsy means daytime sleepiness in the absence of problems in sleeping at night. The daytime sleepiness can take the form of sudden sleep attacks without warning. Cataplexy means having the muscles go limp as a result of some emotional cause, such as laughing. Hypnagogic hallucinations means vivid dreams or hallucinations just as you are falling asleep or waking up. Sleep paralysis means being physically paralyzed except for muscles used for breathing and moving the eyes, as you are falling asleep or waking up. If you have some of these symptoms, I think narcolepsy is a possibility. A sleep lab study can determine this with more certainty. I don't know if your diagnosis of sleep apnea in the hospital resulted from an actual sleep lab study (using EEG measurements among other things) or not. If not, maybe narcolepsy could have been missed. Migraines can be caused by several things. In CFS, there is usually a magnesium deficiency, and this is known to produce migraines as well as muscle twitching, especially in the eyelids, and also heart arrhythmias. If you have these other symptoms in addition to the migraines, you might consider ways of boosting your magnesium, such as magnesium choride (or sulfate) and taurine injections. Baths in Epsom salts may also help. Concerning your nighttime arterial oxygen saturation, 80% is definitely low. Whether or not you have narcolepsy, I think this does demonstrate that you have sleep apnea. I don't know whether it is central or obstructive sleep apnea from what you have said. the following questions pertain to sleeping without the CPAP machine: Do you tend to snore? Do you have a relatively large neck size? Are you aware of obstruction in your nasal passages at night? Do you wake up sometimes with a snort or a gasp? In CFS, I think some people have central sleep apnea, caused by low carbon dioxide production because of a low rate of metabolism, secondary to partial blockades in the oxidative metabolism of the skeletal muscle cells. The brain stem respiratory center decreases the rate and depth of breathing in order to raise the carbon dioxide level in the blood. If you have central sleep apnea, you may do better with a BIPAP machine, rather than a CPAP machine. The oxygen may help, particularly if it is applied via the CPAP machine, but if it's central sleep apnea, a BIPAP machine with oxygen would probably help more. Your high heart rate may be an attempt by your brain to compensate for low cardiac output. Do you have orthostatic hypotension (tendency to faint when you stand)? You asked about side effects of supplemental oxygen. It's true that people who are given pure oxygen or nearly pure oxygen on a continuous basis do develop lung damage. According to the Cecil Textbook of Medicine, the limit on oxygen percentage above which lung damage occurs is not known, but it is generally thought that levels below 80% oxygen are O.K. The lung damage occurs because of the generation of oxidizing free radicals, so I think that what happens is that the person runs low on glutathione in their epithelial lining fluid, and thus they lose their protection against the oxidizing free radicals. This would suggest that a person with glutathione depletion, such as a PWC, might be more vulnerable to oxygen toxicity in the lungs. (Personally, I think that intensive care units should give people nebulized glutathione when they are on ventilators, and I think that would save a lot of lives, but so far it isn't done, as far as I know.) You asked whether I think taking more reduced glutathione orally would do you some good. Well, it might. It's hard to say for sure. If you've been reading my recent posts, you know that I had a big revelation when I went to the DAN! meeting, which was that most likely the glutathione depletion in CFS is tied to problems in the methylation cycle. I have therefore been focusing my effort on encouraging people to get their genetic variations affecting this part of their biochemistry characterized, and to try supplements such as methylcobalamin, folinic acid and trimethylglycine to improve their methylation cycle, partly as a means of helping to build their glutathione. I don't know about your methylation situation, but something like this might help you, too. I guess that's about all I can say, given that I don't know your whole story. I hope this helps. Rich > > > > Hi Rich and all, > > I get the digest and it is really hard to post to the list. I > recently had a wreck that totaled by car and I have a compression of > the 8th thoracic v. Well my problem is I want to sleep so much of > the time. I have access to methyl pred and thinking about taking > that it to up my energy level. The only think is my pulse is already > high (95-100) most of the time. I have sleep apnea and have been > prescribed oxygen at night, I was told that it would make me feel > more alert during the day but that hasn't happened. Do you or anyone > know of side effects of supplemental oxygen? About the glutathione, > I am sure I am low, tried taking some of the powders some time ago > but couldn't tolerate them. Now I have 50 mg. Reduced Glutathione > sublingual tablets from Source Naturals but I only take one a day. > > Any suggestions, I really feel lousey. > > Thanks, > > H. > > Quote Link to comment Share on other sites More sharing options...
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