Guest guest Posted April 23, 1998 Report Share Posted April 23, 1998 Alice, My daughter and I were also talking today about my severe varicose veins and she was pointing out the poor blood circulation in relation to not moving the oxygen around the body. It's funny the last Dr. asked me about doing a sleep study when I told her I had to pull over in the car at times when I would become so sleepy it was a drugged feeling and it was that or fall asleep driving but I ignored her thinking, " What is she talking about? " I thought I do this in reaction to eating certain foods and what does that have to do with a sleep disorder. I'm not wasting money on that. Now I'm beginning to get the picture. So if sleeping upright or with the window open is not enough do you sleep with an oxygen mask or something? Or is there some medicine they can give you to help? Is low blood pressure anything to do with this? I'll ask the Dr. all this tomorrow when I go for my urine infection & see what he says. Wow, that could be exciting if I need and could get more oxygen then maybe it would help me think better or with my senses working better so I could " feel " (like my nervous system). Hopeful thinking maybe. S. Re: Pain in Mito >> >> >>> >>> >>>Alice- >>> >>>Things will get better with the CPAP. I still awaken somewhat when I turn >>over (have to move the hose), >>>but I go back to sleep immediately. Give it a little longer and then ask >>for some help if things don't >>>improve. I went 6 months being awake more than before the CPAP. I finally >>made an appointment with the >>>sleep doc. Part of my problem was my mask. It didn't fit properly. I tried >>several of them at the sleep >>>lab and found one that works so very much better. I was still waking a >lot. >>The doc started me on 1 L. of >>>oxygen in the CPAP. That made a big difference. I didn't even get up to go >>to the bathroom last night. >>>That is very unusual, but you get the idea. I use a cool pass-over >>humidifier. My nose plugs up >>>immediately without it. >>> >>>My sleep doc said that I could start the Klonopin now that I am on the >>CPAP, but I'm hoping to get along >>>without it. I hope your Indocin starts helping you. I'm certainly not >pain >>free, but the >>>anti-inflammatory does help. >>> >>>Laurie >>> >>>PS - Yay for recliners. >>> >>>> My physician has recently put me on an anti-inflammatory med. called >>>> Indomethuacin, but I haven't noticed much relief. Of course, I am >>supposed >>>> to take it three times a day and I have not followed that regiment yet. >>>> >>>> About the Clonazepam - well, although I have seep apnea, the sleep >>>> specialist has told me that it's ok to take one .5 mg. tablet each night >>and >>>> I have continued to do so. I have been on CPAP for about four weeks now >>>> and, just last night, used the heated humidifier for the first time. My >>>> comments about the CPAP are that I like the effect of not gasping for >air >>in >>>> the night, but I am stiil waking up every two hours. I am wondering if >>that >>>> will ever stop. >>>> >>>> Alice >>> >>> >>> >>> >>>------------------------------------------------------------------------ >>>Tired of empty chat rooms and out of date bulletin boards? >>>http://www.ONElist.com >>>ONElist: Making the Internet Intimate >>>------------------------------------------------------------------------ >>>Brought to you by www.imdn.org - an on-line support group for those >>affected by mitochondrial disease. >>> >> >> >>------------------------------------------------------------------------ >>Are you hogging all the fun? >>http://www.ONElist.com >>Friends tell friends about ONElist! >>------------------------------------------------------------------------ >>Brought to you by www.imdn.org - an on-line support group for those >affected by mitochondrial disease. > > >------------------------------------------------------------------------ >Did you know that knowledge is power? >http://www.ONElist.com >Join a new ONElist e-mail community and strengthen your mind! >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 1998 Report Share Posted April 23, 1998 Laurie, What is a CPAP? S. Re: Pain in Mito > > >- > >You might want to consult a sleep specialist. Usually a sleep study is required to determine apnea or >very slow shallow breathing like I have during sleep. That is the reason that I use the oxygen - because >my oxygen level is low during sleep even with the CPAP. > >Laurie > >> How would you check this out? Would just sleeping with the window open >> (altho I will freeze) give me enough fresh air or sleeping more upright or >> using a humidifier (which makes it easier to breath)? >> S. > > > > >------------------------------------------------------------------------ >You can now easily share photos and documents with your fellow list members >http://www.ONElist.com >Check out our homepage for details on how to use our new shared files feature! >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 1999 Report Share Posted April 21, 1999 Joanne- Kent had severe abdominal pain for years. I don't think he ever got through a day without spending part of it on the cot in the office because of it. Finally at age 15, he was evaluated in a head pain clinic for his migraines. They suspected abdominal migraines as the cause of his tummy pain. Once his migraines were well controlled, the abdominal pain only appeared once in a great while. It was later discovered that he was having nocturnal seizures and then the question came up of abdominal seizures. He would get white as a sheet and his pulse would drop and become thready when he had the pain. Have the girls been checked for these? I have muscle pain every single day. Some days it is worse than others. I also have tightness which causes secondary tendonitis which causes it's own pain. Maintaining a position, such as standing, is more painful than moving. I also have a complex I defect. Laurie Joanne Kocourek wrote: > What type of experiences have other list members had regarding " pain " > related to mito disease? My daughters have a Complex I defect with > extremely different clinical presentations, yet has complained of > severe abdominal pain since December/January. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 1999 Report Share Posted April 22, 1999 Joanne Kocourek wrote: < What type of experiences have other list members had regarding " pain " related to mito disease?>>snip I have disfuse skeletal muscle pain on a continuing basis. It has been my primary complaint for years and years. Doctors couldn't make a diagnosis based on my complaints. Then in 1994 a mito dx was made based on a fresh muscle biopsy. The pain is increased with activities but I just " carry on " as the most of you. I take pain rx but if I get too ambitious then the pain shuts me down. As the years have progressed I now have severe pain in my legs as a result of what others would call normal activities. I also have developed other symptoms that have confirmed the diagnosis of mitochondrial myopathy, chronic progressive external ophthalmoplegia. A clearer diagnosis has not been pursued such as DNA studies. Yes, pain is part and parcel of the disease. I have also learned that certain foods and their additives (MSG and such)and certain medications severely aggravate the muscle pain. Linna, with CPEO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 1999 Report Share Posted April 23, 1999 , I agree with Laurie on this issue. I found myself waking up gasping for air and when I had the sleep study done, I found out that I have 19 sleep apnea episodes a minute, some which last as long as 45 seconds. This means that I literally stop breathing for 45 seconds out of a minute. Kinda scary - but that explains the gasping feeling. I also feel more rested after a snooze in my recliner. It is my favorite place to be and for those of you who chat with me on Sunday nights at the MGH room, that is where I am usually sitting - with my laptop (picture that would you). I actually would much rather sleep in the chair than in my bed. Tell your PCP about these experiences and ask him to set you up with a sleep specialist. Don't waste time with this. It is not something you want to fool around with. It can be very dangerous - in more ways than one. Good Luck !! Alice Re: Pain in Mito > > >> >> >>Alice- >> >>Things will get better with the CPAP. I still awaken somewhat when I turn >over (have to move the hose), >>but I go back to sleep immediately. Give it a little longer and then ask >for some help if things don't >>improve. I went 6 months being awake more than before the CPAP. I finally >made an appointment with the >>sleep doc. Part of my problem was my mask. It didn't fit properly. I tried >several of them at the sleep >>lab and found one that works so very much better. I was still waking a lot. >The doc started me on 1 L. of >>oxygen in the CPAP. That made a big difference. I didn't even get up to go >to the bathroom last night. >>That is very unusual, but you get the idea. I use a cool pass-over >humidifier. My nose plugs up >>immediately without it. >> >>My sleep doc said that I could start the Klonopin now that I am on the >CPAP, but I'm hoping to get along >>without it. I hope your Indocin starts helping you. I'm certainly not pain >free, but the >>anti-inflammatory does help. >> >>Laurie >> >>PS - Yay for recliners. >> >>> My physician has recently put me on an anti-inflammatory med. called >>> Indomethuacin, but I haven't noticed much relief. Of course, I am >supposed >>> to take it three times a day and I have not followed that regiment yet. >>> >>> About the Clonazepam - well, although I have seep apnea, the sleep >>> specialist has told me that it's ok to take one .5 mg. tablet each night >and >>> I have continued to do so. I have been on CPAP for about four weeks now >>> and, just last night, used the heated humidifier for the first time. My >>> comments about the CPAP are that I like the effect of not gasping for air >in >>> the night, but I am stiil waking up every two hours. I am wondering if >that >>> will ever stop. >>> >>> Alice >> >> >> >> >>------------------------------------------------------------------------ >>Tired of empty chat rooms and out of date bulletin boards? >>http://www.ONElist.com >>ONElist: Making the Internet Intimate >>------------------------------------------------------------------------ >>Brought to you by www.imdn.org - an on-line support group for those >affected by mitochondrial disease. >> > > >------------------------------------------------------------------------ >Are you hogging all the fun? >http://www.ONElist.com >Friends tell friends about ONElist! >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 1999 Report Share Posted April 24, 1999 - Most people who have sleep apnea use either a CPAP or biPAP machine. I use a CPAP. You wear a mask at night. The machine puts the normal room air under pressure. This helps deliver the air to you in a way that obstructive sleep apnea is minimized. The pressure setting is determined by the doctor from the results of the sleep study. If the oxygen saturation in the blood stays low, even with the CPAP, then the doctor can order supplimental oxygen which is added to the flow of pressurized air. I have this also. The doctor determines the amount of oxygen that is needed. I have an oxygen concentrator which takes the room air and captures the oxygen. It is a type of compressor. Laurie > It's funny the last Dr. asked me about doing a sleep study when I told her I > had to pull over in the car at times when I would become so sleepy it was a > drugged feeling and it was that or fall asleep driving but I ignored her > thinking, " What is she talking about? " I thought I do this in reaction to > eating certain foods and what does that have to do with a sleep disorder. > I'm not wasting money on that. > Now I'm beginning to get the picture. > So if sleeping upright or with the window open is not enough do you sleep > with an oxygen mask or something? Or is there some medicine they can give > you to help? Is low blood pressure anything to do with this? > I'll ask the Dr. all this tomorrow when I go for my urine infection & see > what he says. Wow, that could be exciting if I need and could get more > oxygen then maybe it would help me think better or with my senses working > better so I could " feel " (like my nervous system). Hopeful thinking maybe. > S. Quote Link to comment Share on other sites More sharing options...
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