Guest guest Posted April 21, 1998 Report Share Posted April 21, 1998 We only have suspected mito and I still feel it has to do with the pyruvate dehydrogenase complex. Pain has also been an issue for us forever and most people don't believe it. My 3rd daughter complained daily of headache and tummy ache and would lay around white as a sheet for years. She also has always complained of back pain. Just today I was going thru the leg pain thing with 1 of the 4 yr old grandsons. I gave him a fizzy drink with the Bvit and minerals and C in it. I think that helps us some. He was limping around. Different ones of us will awaken in the night with terrible leg cramping. Kody is now beginning the bad headache and backache issue. He is still having the bathroom problem. I don't even get it now as sometimes he is not even constipated yet still says it hurts and can't go. We have noticed at times he has extremely large movements even when soft. Several other kids in the family are doing the tummy ache thing. The schools and Dr.s like to brush these off as they insist it is emotional or power plays. It makes me feel very angry. I take the magnesium for my own back pain and it seems to give me muscle strength like I have better posture but I also have fallen bad twice. My older sister has deteriorating discs as may my daughters. S. Pain in Mito > > >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. She has had an extensive GI >workup that has had a variety of inconsistent findings, ie there one clinic >visit not the next. Constipation/dysmotility is an issue that we are >treating aggressively. lies has had intermittent complaints of milder >abdominal pain for almost a year but recently is complaining for pain more >frequently and the intensity is clearly increasing. also complains >of intermittent chest and/or leg pain, lies of leg and/or severe back >pain. > >At one time one of our primary docs said pain was a part of the disease >process, yet on Saturday before was discharged from the hospital, I >was told that " even though this is a nasty disease, one good thing about it >is that the kids don't have pain associated with it " . 's comment on >the way home was, " just because my tummy looks good now, but that doesn't >mean it doesn't hurt " . > >I feel that I must believe my girls when they complain of pain and that the >pain they are feeling is very real even if the medical community can't >identify a direct etiology of that pain at the moment. To date, neither >daughter has given me any reason or indication to not trust them to be >honest when it comes to medical issues. > >Do others have similar pain, sometimes debilitating in nature? How do you >manage it? What strategies have been helpful in maintaining >function/activity in spite of the pain? > > > > > > > > >Joanne Kocourek >The University of Chicago >jskocour@... > >------------------------------------------------------------------------ >Did you know that ONElist hosts some of the largest lists on the Internet? >http://www.ONElist.com >Our scaleable system is the most reliable free e-mail service on the Internet! >------------------------------------------------------------------------ >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 22, 1998 Report Share Posted April 22, 1998 Laurie and anyone else -Something in this post just hit me like a brick. It's one of those AHA! experiences. Only I have no idea if I'm right or not, may be way off base but it just clicked. Maybe when I wake up every night or wee early hours of the morning it is because I am having trouble breathing. I have many times had to run to the door or open a window and stick my head out telling my husband I HAVE to get air. My chest feels heavy and the air feels SO still. Many times I don't know what is waking me but it is so sudden and so complete (takes me hours to go back to sleep). I have so far attributed this awakening to past abuse issues thinking maybe I had a nightmare I'm not aware of or something. I've also had problems just falling asleep anywhere with no control. But another thing that just clicked with this post is the recliner comments as I have had the strangest thing happen to me a number of times. When I fall asleep in the daytime in an upright or barely reclining position I get more rest-deep deep sleep- & feel more refreshed with 10-30 min. of sleep than all nite sleeping. I even have the sensation of that refreshing it's a new start feeling I've heard others say they feel in the mornings whereas I always feel just as tired in the morning and it's never a new start. I always wondered what chemical difference there was in sleeping upright and now I'm thinking DA, you probably need plenty of oxygen to rest and refresh your mind and body while I'm probably fighting to get enough. I know I have a problem with oxygen like I have hyperventilated for no reason and when I've gotten enough it's like the light goes on in my head. Now I'm even wondering if this isn't why Tylynn (grandson) opted continually to sleep in grandpa's recliner until he was so large we made him go to his bed at night-like 5 yrs old. People instinctively know what they need with out even conciously knowing many times. 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. 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. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 1998 Report Share Posted April 22, 1998 Laurie and anyone else -Something in this post just hit me like a brick. It's one of those AHA! experiences. Only I have no idea if I'm right or not, may be way off base but it just clicked. Maybe when I wake up every night or wee early hours of the morning it is because I am having trouble breathing. I have many times had to run to the door or open a window and stick my head out telling my husband I HAVE to get air. My chest feels heavy and the air feels SO still. Many times I don't know what is waking me but it is so sudden and so complete (takes me hours to go back to sleep). I have so far attributed this awakening to past abuse issues thinking maybe I had a nightmare I'm not aware of or something. I've also had problems just falling asleep anywhere with no control. But another thing that just clicked with this post is the recliner comments as I have had the strangest thing happen to me a number of times. When I fall asleep in the daytime in an upright or barely reclining position I get more rest-deep deep sleep- & feel more refreshed with 10-30 min. of sleep than all nite sleeping. I even have the sensation of that refreshing it's a new start feeling I've heard others say they feel in the mornings whereas I always feel just as tired in the morning and it's never a new start. I always wondered what chemical difference there was in sleeping upright and now I'm thinking DA, you probably need plenty of oxygen to rest and refresh your mind and body while I'm probably fighting to get enough. I know I have a problem with oxygen like I have hyperventilated for no reason and when I've gotten enough it's like the light goes on in my head. Now I'm even wondering if this isn't why Tylynn (grandson) opted continually to sleep in grandpa's recliner until he was so large we made him go to his bed at night-like 5 yrs old. People instinctively know what they need with out even conciously knowing many times. 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. 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. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 1998 Report Share Posted April 26, 1998 Thank you for explaining this in detail Laurie. I will see my Dr. May 10th and discuss the sleep/breathing issues with him then. S. Re: Pain in Mito > > >- > >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. > > > > >------------------------------------------------------------------------ >Shop.theglobe.com * One-Stop Shopping * Free Shipping in U.S.! >Live Personal Shopper * Satisfaction Guaranteed * No Hassle Returns! >Accessories, Apparel, Jewelry, Kids, Sporting Goods, Apparel, More!! > http://www.onelist.com/ad/shoptheglobe0 >------------------------------------------------------------------------ >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 26, 1998 Report Share Posted April 26, 1998 Thank you for explaining this in detail Laurie. I will see my Dr. May 10th and discuss the sleep/breathing issues with him then. S. Re: Pain in Mito > > >- > >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. > > > > >------------------------------------------------------------------------ >Shop.theglobe.com * One-Stop Shopping * Free Shipping in U.S.! >Live Personal Shopper * Satisfaction Guaranteed * No Hassle Returns! >Accessories, Apparel, Jewelry, Kids, Sporting Goods, Apparel, More!! > http://www.onelist.com/ad/shoptheglobe0 >------------------------------------------------------------------------ >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 26, 1998 Report Share Posted April 26, 1998 Thank you for explaining this in detail Laurie. I will see my Dr. May 10th and discuss the sleep/breathing issues with him then. S. Re: Pain in Mito > > >- > >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. > > > > >------------------------------------------------------------------------ >Shop.theglobe.com * One-Stop Shopping * Free Shipping in U.S.! >Live Personal Shopper * Satisfaction Guaranteed * No Hassle Returns! >Accessories, Apparel, Jewelry, Kids, Sporting Goods, Apparel, More!! > http://www.onelist.com/ad/shoptheglobe0 >------------------------------------------------------------------------ >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 20, 1999 Report Share Posted April 20, 1999 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. She has had an extensive GI workup that has had a variety of inconsistent findings, ie there one clinic visit not the next. Constipation/dysmotility is an issue that we are treating aggressively. lies has had intermittent complaints of milder abdominal pain for almost a year but recently is complaining for pain more frequently and the intensity is clearly increasing. also complains of intermittent chest and/or leg pain, lies of leg and/or severe back pain. At one time one of our primary docs said pain was a part of the disease process, yet on Saturday before was discharged from the hospital, I was told that " even though this is a nasty disease, one good thing about it is that the kids don't have pain associated with it " . 's comment on the way home was, " just because my tummy looks good now, but that doesn't mean it doesn't hurt " . I feel that I must believe my girls when they complain of pain and that the pain they are feeling is very real even if the medical community can't identify a direct etiology of that pain at the moment. To date, neither daughter has given me any reason or indication to not trust them to be honest when it comes to medical issues. Do others have similar pain, sometimes debilitating in nature? How do you manage it? What strategies have been helpful in maintaining function/activity in spite of the pain? Joanne Kocourek The University of Chicago jskocour@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 1999 Report Share Posted April 20, 1999 My grandson has terrible pain. He has complex 1 and is to little to not be honest. In fact he is 3 years old and the pain is unbearable and we also have terrible mobility issues. We also have no answers to the pain. We don't know why either but he will wake from a dead sleep in horrible pain. So far we just give him motrin and tylenol every 3 hours alternating. He sees his ped. sur. in a week. We are supposed to keep track of how much he can tolerate in oz. per feeding. He has a g-tube and hasn't eaten orally since December to speak of. We are thinking his stomach is just too full because he can't digest quickly enough. However, he has only been getting 2 teas. per hour and still the pain. Today he is swollen which is common for him and it lasts as long as 3 or 4 days. He suffers so and crys in his sleep. How can you fake that? This is all new to us having only gotten a positive answer as to what is wrong with him last December and everything has been down hill for us with his health. I am beginning to believe it will be a quess at best why the pain. The doctor we are going to see isn't to up on mito and so we don't know what to expect with him at this appointment. His stomach surgery went well for vomiting and the g-tube has saved his life but we really don't know where to go from here as to help him symptomatically. My best to you and if I find out anything I will post. Yours truly (grandmother to 3 years old) Complex 1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 1999 Report Share Posted April 20, 1999 >I would love to hear from some of the rest of the list with regard to this > >topic. Hi Alice, I have LOTS of pain as well. I have constant muscle pain and sometimes very severe nerve pain. I also have spells of diarrhea frequently that are accompanied with pain from which I break out in a sweat and nearly pass out with. I have sharp pains in my head and constant burning sensations in my brain. Then I take spells where my whole body vibrates and at those times my face gets real numb and often will twitch. And I also have frequent spells of a heaviness in the back of my head. I have had spells of such significant nerve pain in my left arm that just a sheet gently placed over my arm would cause excruciating pain. Drafts cause a lot of problems too. Not to mention if I keep trying to do something that I can't really do at the moment, I will then get cramping in my muscles. Sometimes if one of my children just bump up against a certain part of my legs, it will hurt (areas that have sunk in spots from atrophy). My children have pain as well. My nearly 16 year old was once debilitated from severe muscle pain. He improved once he started on coq10. My youngest gets sharp pains in his head and will pass out immediately. My 13 year old has intermittent pain as well. He had one episode of a severe sharp pain in his head from which he nearly passed out. His doctor agreed it sounded a little suspicious like possibly he was trying to have a stroke like event. I take one medication for the muscle pain, another for the nerve pain as well as I take motrin. My youngest takes phenergan with codeine at night if he gets severe leg pains. Cheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 1999 Report Share Posted April 21, 1999 Joanne, I am an adult and have suspected mito due to my daughter's diagnosis and my symptoms. It is interesting that you bring up this topic. I have suffered almost constant pain over the last several years. I just thought it was getting older - I am now 55. The pain that I feel is basically everywhere. My entire body aches at times. I have had a tremendous amount of back pain for the last 15 years - and for the last 4 have very uncomfortable siatica. But that is only part of it - and it is difficult to explain because the pain can chose where it wants to go at any given time. Unfortunately, I have not found anything that relieves it. When I try - my head roars much worse than it ordinarily does and the little bit of hearing that I have left in my right ear is gone almost completely. I would love to hear from some of the rest of the list with regard to this topic. Alice Pain in Mito > > >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. She has had an extensive GI >workup that has had a variety of inconsistent findings, ie there one clinic >visit not the next. Constipation/dysmotility is an issue that we are >treating aggressively. lies has had intermittent complaints of milder >abdominal pain for almost a year but recently is complaining for pain more >frequently and the intensity is clearly increasing. also complains >of intermittent chest and/or leg pain, lies of leg and/or severe back >pain. > >At one time one of our primary docs said pain was a part of the disease >process, yet on Saturday before was discharged from the hospital, I >was told that " even though this is a nasty disease, one good thing about it >is that the kids don't have pain associated with it " . 's comment on >the way home was, " just because my tummy looks good now, but that doesn't >mean it doesn't hurt " . > >I feel that I must believe my girls when they complain of pain and that the >pain they are feeling is very real even if the medical community can't >identify a direct etiology of that pain at the moment. To date, neither >daughter has given me any reason or indication to not trust them to be >honest when it comes to medical issues. > >Do others have similar pain, sometimes debilitating in nature? How do you >manage it? What strategies have been helpful in maintaining >function/activity in spite of the pain? > > > > > > > > >Joanne Kocourek >The University of Chicago >jskocour@... > >------------------------------------------------------------------------ >Did you know that ONElist hosts some of the largest lists on the Internet? >http://www.ONElist.com >Our scaleable system is the most reliable free e-mail service on the Internet! >------------------------------------------------------------------------ >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 Laurie, The only place I seem to get comfort is in my recliner. I have gotten up many nights and gone there just to try to get a little sleep. 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 Re: Pain in Mito > > >Alice- > >I know what you mean about the pain choosing it's spot. I have found that if I am using my back muscles >to sit or stand, then it is worse. If I am able to sit in my lounge chair then I might not have so much >pain in my back the next day. > >I do take an anti-inflammatory (prescription) which helps the tendonitis. The Dilantin I take to reduce >spasms and cramps also helps. I did take Klonopin which helped too, but have stopped taking it as a >result of the diagnosis of sleep apnea. > >Laurie > >> I am an adult and have suspected mito due to my daughter's diagnosis and my >> symptoms. It is interesting that you bring up this topic. I have suffered >> almost constant pain over the last several years. I just thought it was >> getting older - I am now 55. The pain that I feel is basically everywhere. >> My entire body aches at times. I have had a tremendous amount of back pain >> for the last 15 years - and for the last 4 have very uncomfortable siatica. >> But that is only part of it - and it is difficult to explain because the >> pain can chose where it wants to go at any given time. >> >> Unfortunately, I have not found anything that relieves it. When I try - my >> head roars much worse than it ordinarily does and the little bit of hearing >> that I have left in my right ear is gone almost completely. > > > > >------------------------------------------------------------------------ >New hobbies? New curiosities? New enthusiasms? >http://www.ONElist.com >Sign up for a new e-mail list today! >------------------------------------------------------------------------ >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 Alice- I know what you mean about the pain choosing it's spot. I have found that if I am using my back muscles to sit or stand, then it is worse. If I am able to sit in my lounge chair then I might not have so much pain in my back the next day. I do take an anti-inflammatory (prescription) which helps the tendonitis. The Dilantin I take to reduce spasms and cramps also helps. I did take Klonopin which helped too, but have stopped taking it as a result of the diagnosis of sleep apnea. Laurie > I am an adult and have suspected mito due to my daughter's diagnosis and my > symptoms. It is interesting that you bring up this topic. I have suffered > almost constant pain over the last several years. I just thought it was > getting older - I am now 55. The pain that I feel is basically everywhere. > My entire body aches at times. I have had a tremendous amount of back pain > for the last 15 years - and for the last 4 have very uncomfortable siatica. > But that is only part of it - and it is difficult to explain because the > pain can chose where it wants to go at any given time. > > Unfortunately, I have not found anything that relieves it. When I try - my > head roars much worse than it ordinarily does and the little bit of hearing > that I have left in my right ear is gone almost completely. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 1999 Report Share Posted April 22, 1999 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 1999 Report Share Posted April 22, 1999 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 1999 Report Share Posted April 22, 1999 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 1999 Report Share Posted April 22, 1999 - 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 1999 Report Share Posted April 22, 1999 - 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 1999 Report Share Posted April 22, 1999 - 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. Quote Link to comment Share on other sites More sharing options...
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