Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 In a message dated 08/16/2002 5:24:38 PM US Eastern Standard Time, cats_meow429@... writes: > I am following > up because he is supposed to be excellent with medication and since my > internist is not taking any interest in me, he wants to try and take > over and change my medications with regard to depression and anxiety. > Wish me luck!!!! Andi, I do wish you lots of luck...let me know the kind of results that you get....I might consider going to a sleep clinic myself. I think I have restless leg syndrome as well..my current b/f and my ex b/f is/was all the time telling me I kick and move my legs alot in my sleep I also grind me teeth. I have TMJ bbaaddd. (no I'm not a sheep..hee hee) Please do keep me updated and I wish you the bestest of luck..hugzzz Allicia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 In a message dated 08/16/2002 5:24:38 PM US Eastern Standard Time, cats_meow429@... writes: > I am following > up because he is supposed to be excellent with medication and since my > internist is not taking any interest in me, he wants to try and take > over and change my medications with regard to depression and anxiety. > Wish me luck!!!! Andi, I do wish you lots of luck...let me know the kind of results that you get....I might consider going to a sleep clinic myself. I think I have restless leg syndrome as well..my current b/f and my ex b/f is/was all the time telling me I kick and move my legs alot in my sleep I also grind me teeth. I have TMJ bbaaddd. (no I'm not a sheep..hee hee) Please do keep me updated and I wish you the bestest of luck..hugzzz Allicia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 In a message dated 08/16/2002 5:24:38 PM US Eastern Standard Time, cats_meow429@... writes: > I am following > up because he is supposed to be excellent with medication and since my > internist is not taking any interest in me, he wants to try and take > over and change my medications with regard to depression and anxiety. > Wish me luck!!!! Andi, I do wish you lots of luck...let me know the kind of results that you get....I might consider going to a sleep clinic myself. I think I have restless leg syndrome as well..my current b/f and my ex b/f is/was all the time telling me I kick and move my legs alot in my sleep I also grind me teeth. I have TMJ bbaaddd. (no I'm not a sheep..hee hee) Please do keep me updated and I wish you the bestest of luck..hugzzz Allicia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 As we all know, sleep disorders are a very common problem with Fibro-CFS. I have suffered from sleep disorders for years. I am so disabled between CFS-Fibro and sleep disorders that I just don't function at all. I am on my fourth sleep clinic. I have well known and well understood sleep disorders and I have found that if the sleep specialists are not familiar with Fibro-CFS, they don't want to bother with complicated cases. It took 3 days alone for them to get my complicated history. I went to the first appt and was so exhausted and had such a bad crash that thank goodness they understood me so well, they did the rest of the history on the phone, 1 hour each time. Then I had to wait a month for an appt to follow-up and see the head of the sleep clinic which won't be until August 28th. I did meet the doctor and was impressed by him and hope I had good judgment. I am following up because he is supposed to be excellent with medication and since my internist is not taking any interest in me, he wants to try and take over and change my medications with regard to depression and anxiety. Wish me luck!!!! I wrote this because sleep clinics are a place that we don't know what is going on. For any of you that go, use your judgement, try to be sure that you trust the doctor and the clinic and remember that in this field there are alot of doctors who do not know what they are doing. Also make sure they are sleep certified. This can make all the difference. Also when they want to do a sleep study, most of them are done for sleep apnea. When I had mine, I found out that I had Restless Leg Syndrome and Periodic Limb Movements so it was worthwhile but I will never do one again. I would be interested in hearing from anyone that has bad sleep disorders. Inability to sleep or fall asleep, hypnagogic hallucinations, sleep paralysis and Restless Leg Syndrome and Periodic Limb Movements. Feel free to write me privately or through the group. Thanks, Andi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 As we all know, sleep disorders are a very common problem with Fibro-CFS. I have suffered from sleep disorders for years. I am so disabled between CFS-Fibro and sleep disorders that I just don't function at all. I am on my fourth sleep clinic. I have well known and well understood sleep disorders and I have found that if the sleep specialists are not familiar with Fibro-CFS, they don't want to bother with complicated cases. It took 3 days alone for them to get my complicated history. I went to the first appt and was so exhausted and had such a bad crash that thank goodness they understood me so well, they did the rest of the history on the phone, 1 hour each time. Then I had to wait a month for an appt to follow-up and see the head of the sleep clinic which won't be until August 28th. I did meet the doctor and was impressed by him and hope I had good judgment. I am following up because he is supposed to be excellent with medication and since my internist is not taking any interest in me, he wants to try and take over and change my medications with regard to depression and anxiety. Wish me luck!!!! I wrote this because sleep clinics are a place that we don't know what is going on. For any of you that go, use your judgement, try to be sure that you trust the doctor and the clinic and remember that in this field there are alot of doctors who do not know what they are doing. Also make sure they are sleep certified. This can make all the difference. Also when they want to do a sleep study, most of them are done for sleep apnea. When I had mine, I found out that I had Restless Leg Syndrome and Periodic Limb Movements so it was worthwhile but I will never do one again. I would be interested in hearing from anyone that has bad sleep disorders. Inability to sleep or fall asleep, hypnagogic hallucinations, sleep paralysis and Restless Leg Syndrome and Periodic Limb Movements. Feel free to write me privately or through the group. Thanks, Andi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 As we all know, sleep disorders are a very common problem with Fibro-CFS. I have suffered from sleep disorders for years. I am so disabled between CFS-Fibro and sleep disorders that I just don't function at all. I am on my fourth sleep clinic. I have well known and well understood sleep disorders and I have found that if the sleep specialists are not familiar with Fibro-CFS, they don't want to bother with complicated cases. It took 3 days alone for them to get my complicated history. I went to the first appt and was so exhausted and had such a bad crash that thank goodness they understood me so well, they did the rest of the history on the phone, 1 hour each time. Then I had to wait a month for an appt to follow-up and see the head of the sleep clinic which won't be until August 28th. I did meet the doctor and was impressed by him and hope I had good judgment. I am following up because he is supposed to be excellent with medication and since my internist is not taking any interest in me, he wants to try and take over and change my medications with regard to depression and anxiety. Wish me luck!!!! I wrote this because sleep clinics are a place that we don't know what is going on. For any of you that go, use your judgement, try to be sure that you trust the doctor and the clinic and remember that in this field there are alot of doctors who do not know what they are doing. Also make sure they are sleep certified. This can make all the difference. Also when they want to do a sleep study, most of them are done for sleep apnea. When I had mine, I found out that I had Restless Leg Syndrome and Periodic Limb Movements so it was worthwhile but I will never do one again. I would be interested in hearing from anyone that has bad sleep disorders. Inability to sleep or fall asleep, hypnagogic hallucinations, sleep paralysis and Restless Leg Syndrome and Periodic Limb Movements. Feel free to write me privately or through the group. Thanks, Andi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 Hi Andi, AAAAH, stupid sleep tests! I agree, I never, ever want to do one again! Unfortunately, my results came back inconclusive and they want me to do another one. It would cost me over $2000 to have another sleep test taken and there is no way I can handle that right now. My doctor thinks I have either sleep apnea or narcolepsy and/or cronic fatigue... So far all tests are inconclusive and I am very frusterated. I fall asleep driving half the time and lately I've been so tired I fall asleep in meetings at work!! That is so incredibly embarrassing and makes me look horrible, especially since I just started this job not too long ago!! *sigh* Charity --- cats_meow429@... wrote: > As we all know, sleep disorders are a very common > problem with > Fibro-CFS. I have suffered from sleep disorders for > years. I am so > disabled between CFS-Fibro and sleep disorders that > I just don't > function at all. I am on my fourth sleep clinic. I > have well known and > well understood sleep disorders and I have found > that if the sleep > specialists are not familiar with Fibro-CFS, they > don't want to bother > with complicated cases. It took 3 days alone for > them to get my > complicated history. I went to the first appt and > was so exhausted and > had such a bad crash that thank goodness they > understood me so well, > they did the rest of the history on the phone, 1 > hour each time. Then I > had to wait a month for an appt to follow-up and see > the head of the > sleep clinic which won't be until August 28th. I > did meet the doctor > and was impressed by him and hope I had good > judgment. I am following > up because he is supposed to be excellent with > medication and since my > internist is not taking any interest in me, he wants > to try and take > over and change my medications with regard to > depression and anxiety. > Wish me luck!!!! I wrote this because sleep clinics > are a place that we > don't know what is going on. For any of you that > go, use your > judgement, try to be sure that you trust the doctor > and the clinic and > remember that in this field there are alot of > doctors who do not know > what they are doing. Also make sure they are sleep > certified. This can > make all the difference. Also when they want to do > a sleep study, most > of them are done for sleep apnea. When I had mine, I > found out that I > had Restless Leg Syndrome and Periodic Limb > Movements so it was > worthwhile but I will never do one again. > > I would be interested in hearing from anyone that > has bad sleep > disorders. Inability to sleep or fall asleep, > hypnagogic hallucinations, > sleep paralysis and Restless Leg Syndrome and > Periodic Limb Movements. > Feel free to write me privately or through the > group. > > Thanks, Andi > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 Hi Andi, AAAAH, stupid sleep tests! I agree, I never, ever want to do one again! Unfortunately, my results came back inconclusive and they want me to do another one. It would cost me over $2000 to have another sleep test taken and there is no way I can handle that right now. My doctor thinks I have either sleep apnea or narcolepsy and/or cronic fatigue... So far all tests are inconclusive and I am very frusterated. I fall asleep driving half the time and lately I've been so tired I fall asleep in meetings at work!! That is so incredibly embarrassing and makes me look horrible, especially since I just started this job not too long ago!! *sigh* Charity --- cats_meow429@... wrote: > As we all know, sleep disorders are a very common > problem with > Fibro-CFS. I have suffered from sleep disorders for > years. I am so > disabled between CFS-Fibro and sleep disorders that > I just don't > function at all. I am on my fourth sleep clinic. I > have well known and > well understood sleep disorders and I have found > that if the sleep > specialists are not familiar with Fibro-CFS, they > don't want to bother > with complicated cases. It took 3 days alone for > them to get my > complicated history. I went to the first appt and > was so exhausted and > had such a bad crash that thank goodness they > understood me so well, > they did the rest of the history on the phone, 1 > hour each time. Then I > had to wait a month for an appt to follow-up and see > the head of the > sleep clinic which won't be until August 28th. I > did meet the doctor > and was impressed by him and hope I had good > judgment. I am following > up because he is supposed to be excellent with > medication and since my > internist is not taking any interest in me, he wants > to try and take > over and change my medications with regard to > depression and anxiety. > Wish me luck!!!! I wrote this because sleep clinics > are a place that we > don't know what is going on. For any of you that > go, use your > judgement, try to be sure that you trust the doctor > and the clinic and > remember that in this field there are alot of > doctors who do not know > what they are doing. Also make sure they are sleep > certified. This can > make all the difference. Also when they want to do > a sleep study, most > of them are done for sleep apnea. When I had mine, I > found out that I > had Restless Leg Syndrome and Periodic Limb > Movements so it was > worthwhile but I will never do one again. > > I would be interested in hearing from anyone that > has bad sleep > disorders. Inability to sleep or fall asleep, > hypnagogic hallucinations, > sleep paralysis and Restless Leg Syndrome and > Periodic Limb Movements. > Feel free to write me privately or through the > group. > > Thanks, Andi > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 Hi Andi, AAAAH, stupid sleep tests! I agree, I never, ever want to do one again! Unfortunately, my results came back inconclusive and they want me to do another one. It would cost me over $2000 to have another sleep test taken and there is no way I can handle that right now. My doctor thinks I have either sleep apnea or narcolepsy and/or cronic fatigue... So far all tests are inconclusive and I am very frusterated. I fall asleep driving half the time and lately I've been so tired I fall asleep in meetings at work!! That is so incredibly embarrassing and makes me look horrible, especially since I just started this job not too long ago!! *sigh* Charity --- cats_meow429@... wrote: > As we all know, sleep disorders are a very common > problem with > Fibro-CFS. I have suffered from sleep disorders for > years. I am so > disabled between CFS-Fibro and sleep disorders that > I just don't > function at all. I am on my fourth sleep clinic. I > have well known and > well understood sleep disorders and I have found > that if the sleep > specialists are not familiar with Fibro-CFS, they > don't want to bother > with complicated cases. It took 3 days alone for > them to get my > complicated history. I went to the first appt and > was so exhausted and > had such a bad crash that thank goodness they > understood me so well, > they did the rest of the history on the phone, 1 > hour each time. Then I > had to wait a month for an appt to follow-up and see > the head of the > sleep clinic which won't be until August 28th. I > did meet the doctor > and was impressed by him and hope I had good > judgment. I am following > up because he is supposed to be excellent with > medication and since my > internist is not taking any interest in me, he wants > to try and take > over and change my medications with regard to > depression and anxiety. > Wish me luck!!!! I wrote this because sleep clinics > are a place that we > don't know what is going on. For any of you that > go, use your > judgement, try to be sure that you trust the doctor > and the clinic and > remember that in this field there are alot of > doctors who do not know > what they are doing. Also make sure they are sleep > certified. This can > make all the difference. Also when they want to do > a sleep study, most > of them are done for sleep apnea. When I had mine, I > found out that I > had Restless Leg Syndrome and Periodic Limb > Movements so it was > worthwhile but I will never do one again. > > I would be interested in hearing from anyone that > has bad sleep > disorders. Inability to sleep or fall asleep, > hypnagogic hallucinations, > sleep paralysis and Restless Leg Syndrome and > Periodic Limb Movements. > Feel free to write me privately or through the > group. > > Thanks, Andi > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 -All of my life my natural sleep pattern seems to be to go to bed around midnight or 1 a.m. and get up around 10 a.m. or 11 a.m. When I get scheduled which is rarely, I feel better. I have also had spells usually in the morning after daylight when I feel like I am awake but cannot open my eyes. I have also had spells where it feels like my whole body is shaking and I cannot open my eyes or move. I will eventually get myself awake but cannot fully wake up. I will open my eyes for a few seconds and then right back to sleep and do it again. It eventually stops and I go back to sleep. It seems like I will do this in spells and then it will stop for a few months or a year or so. What is this? - In @y..., cats_meow429@w... wrote: > As we all know, sleep disorders are a very common problem with > Fibro-CFS. I have suffered from sleep disorders for years. I am so > disabled between CFS-Fibro and sleep disorders that I just don't > function at all. I am on my fourth sleep clinic. I have well known and > well understood sleep disorders and I have found that if the sleep > specialists are not familiar with Fibro-CFS, they don't want to bother > with complicated cases. It took 3 days alone for them to get my > complicated history. I went to the first appt and was so exhausted and > had such a bad crash that thank goodness they understood me so well, > they did the rest of the history on the phone, 1 hour each time. Then I > had to wait a month for an appt to follow-up and see the head of the > sleep clinic which won't be until August 28th. I did meet the doctor > and was impressed by him and hope I had good judgment. I am following > up because he is supposed to be excellent with medication and since my > internist is not taking any interest in me, he wants to try and take > over and change my medications with regard to depression and anxiety. > Wish me luck!!!! I wrote this because sleep clinics are a place that we > don't know what is going on. For any of you that go, use your > judgement, try to be sure that you trust the doctor and the clinic and > remember that in this field there are alot of doctors who do not know > what they are doing. Also make sure they are sleep certified. This can > make all the difference. Also when they want to do a sleep study, most > of them are done for sleep apnea. When I had mine, I found out that I > had Restless Leg Syndrome and Periodic Limb Movements so it was > worthwhile but I will never do one again. > > I would be interested in hearing from anyone that has bad sleep > disorders. Inability to sleep or fall asleep, hypnagogic hallucinations, > sleep paralysis and Restless Leg Syndrome and Periodic Limb Movements. > Feel free to write me privately or through the group. > > Thanks, Andi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 -All of my life my natural sleep pattern seems to be to go to bed around midnight or 1 a.m. and get up around 10 a.m. or 11 a.m. When I get scheduled which is rarely, I feel better. I have also had spells usually in the morning after daylight when I feel like I am awake but cannot open my eyes. I have also had spells where it feels like my whole body is shaking and I cannot open my eyes or move. I will eventually get myself awake but cannot fully wake up. I will open my eyes for a few seconds and then right back to sleep and do it again. It eventually stops and I go back to sleep. It seems like I will do this in spells and then it will stop for a few months or a year or so. What is this? - In @y..., cats_meow429@w... wrote: > As we all know, sleep disorders are a very common problem with > Fibro-CFS. I have suffered from sleep disorders for years. I am so > disabled between CFS-Fibro and sleep disorders that I just don't > function at all. I am on my fourth sleep clinic. I have well known and > well understood sleep disorders and I have found that if the sleep > specialists are not familiar with Fibro-CFS, they don't want to bother > with complicated cases. It took 3 days alone for them to get my > complicated history. I went to the first appt and was so exhausted and > had such a bad crash that thank goodness they understood me so well, > they did the rest of the history on the phone, 1 hour each time. Then I > had to wait a month for an appt to follow-up and see the head of the > sleep clinic which won't be until August 28th. I did meet the doctor > and was impressed by him and hope I had good judgment. I am following > up because he is supposed to be excellent with medication and since my > internist is not taking any interest in me, he wants to try and take > over and change my medications with regard to depression and anxiety. > Wish me luck!!!! I wrote this because sleep clinics are a place that we > don't know what is going on. For any of you that go, use your > judgement, try to be sure that you trust the doctor and the clinic and > remember that in this field there are alot of doctors who do not know > what they are doing. Also make sure they are sleep certified. This can > make all the difference. Also when they want to do a sleep study, most > of them are done for sleep apnea. When I had mine, I found out that I > had Restless Leg Syndrome and Periodic Limb Movements so it was > worthwhile but I will never do one again. > > I would be interested in hearing from anyone that has bad sleep > disorders. Inability to sleep or fall asleep, hypnagogic hallucinations, > sleep paralysis and Restless Leg Syndrome and Periodic Limb Movements. > Feel free to write me privately or through the group. > > Thanks, Andi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 -All of my life my natural sleep pattern seems to be to go to bed around midnight or 1 a.m. and get up around 10 a.m. or 11 a.m. When I get scheduled which is rarely, I feel better. I have also had spells usually in the morning after daylight when I feel like I am awake but cannot open my eyes. I have also had spells where it feels like my whole body is shaking and I cannot open my eyes or move. I will eventually get myself awake but cannot fully wake up. I will open my eyes for a few seconds and then right back to sleep and do it again. It eventually stops and I go back to sleep. It seems like I will do this in spells and then it will stop for a few months or a year or so. What is this? - In @y..., cats_meow429@w... wrote: > As we all know, sleep disorders are a very common problem with > Fibro-CFS. I have suffered from sleep disorders for years. I am so > disabled between CFS-Fibro and sleep disorders that I just don't > function at all. I am on my fourth sleep clinic. I have well known and > well understood sleep disorders and I have found that if the sleep > specialists are not familiar with Fibro-CFS, they don't want to bother > with complicated cases. It took 3 days alone for them to get my > complicated history. I went to the first appt and was so exhausted and > had such a bad crash that thank goodness they understood me so well, > they did the rest of the history on the phone, 1 hour each time. Then I > had to wait a month for an appt to follow-up and see the head of the > sleep clinic which won't be until August 28th. I did meet the doctor > and was impressed by him and hope I had good judgment. I am following > up because he is supposed to be excellent with medication and since my > internist is not taking any interest in me, he wants to try and take > over and change my medications with regard to depression and anxiety. > Wish me luck!!!! I wrote this because sleep clinics are a place that we > don't know what is going on. For any of you that go, use your > judgement, try to be sure that you trust the doctor and the clinic and > remember that in this field there are alot of doctors who do not know > what they are doing. Also make sure they are sleep certified. This can > make all the difference. Also when they want to do a sleep study, most > of them are done for sleep apnea. When I had mine, I found out that I > had Restless Leg Syndrome and Periodic Limb Movements so it was > worthwhile but I will never do one again. > > I would be interested in hearing from anyone that has bad sleep > disorders. Inability to sleep or fall asleep, hypnagogic hallucinations, > sleep paralysis and Restless Leg Syndrome and Periodic Limb Movements. > Feel free to write me privately or through the group. > > Thanks, Andi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2002 Report Share Posted August 18, 2002 In a message dated 08/18/2002 5:52:33 AM US Eastern Standard Time, catstamp@... writes: > " I can't move " feeling, but since you're still partially awake, you're > fighting it. > I get this all the dang time....I'll be laying there in bed...and I can hear the t.v. or whatever noise...but I can't get awake....no matter how hard I try I can't wake up....and then I will drift off for alil' while longer then BOMB back to trying to wake up again.....this will go on for what seems like forever. Allicia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2002 Report Share Posted August 18, 2002 In a message dated 08/18/2002 5:52:33 AM US Eastern Standard Time, catstamp@... writes: > " I can't move " feeling, but since you're still partially awake, you're > fighting it. > I get this all the dang time....I'll be laying there in bed...and I can hear the t.v. or whatever noise...but I can't get awake....no matter how hard I try I can't wake up....and then I will drift off for alil' while longer then BOMB back to trying to wake up again.....this will go on for what seems like forever. Allicia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2002 Report Share Posted August 18, 2002 reds_henry wrote: > >I have also had spells > usually in the morning after daylight when I feel like I am awake but > cannot open my eyes. I have also had spells where it feels like my > whole body is shaking and I cannot open my eyes or move. I will > eventually get myself awake but cannot fully wake up. I will open my > eyes for a few seconds and then right back to sleep and do it again. I wonder if you're getting caught in the stage between awakeness and sleep. I do what sounds like something very similar if not the same. It's like the building is on fire/being robbed/ something desperate that you *must* open your eyes for, but no matter how hard you try, you can't get them open or just for a second, and then you're back to trying again. I think it's where I'm starting to head into sleep, but am conscious enough to know what's going on, but the paralyzing sleep chemicals your body puts out are already present. That's what gives the " I can't move " feeling, but since you're still partially awake, you're fighting it. Just my thoughts Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2002 Report Share Posted August 18, 2002 reds_henry wrote: > >I have also had spells > usually in the morning after daylight when I feel like I am awake but > cannot open my eyes. I have also had spells where it feels like my > whole body is shaking and I cannot open my eyes or move. I will > eventually get myself awake but cannot fully wake up. I will open my > eyes for a few seconds and then right back to sleep and do it again. I wonder if you're getting caught in the stage between awakeness and sleep. I do what sounds like something very similar if not the same. It's like the building is on fire/being robbed/ something desperate that you *must* open your eyes for, but no matter how hard you try, you can't get them open or just for a second, and then you're back to trying again. I think it's where I'm starting to head into sleep, but am conscious enough to know what's going on, but the paralyzing sleep chemicals your body puts out are already present. That's what gives the " I can't move " feeling, but since you're still partially awake, you're fighting it. Just my thoughts Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2002 Report Share Posted August 18, 2002 reds_henry wrote: > >I have also had spells > usually in the morning after daylight when I feel like I am awake but > cannot open my eyes. I have also had spells where it feels like my > whole body is shaking and I cannot open my eyes or move. I will > eventually get myself awake but cannot fully wake up. I will open my > eyes for a few seconds and then right back to sleep and do it again. I wonder if you're getting caught in the stage between awakeness and sleep. I do what sounds like something very similar if not the same. It's like the building is on fire/being robbed/ something desperate that you *must* open your eyes for, but no matter how hard you try, you can't get them open or just for a second, and then you're back to trying again. I think it's where I'm starting to head into sleep, but am conscious enough to know what's going on, but the paralyzing sleep chemicals your body puts out are already present. That's what gives the " I can't move " feeling, but since you're still partially awake, you're fighting it. Just my thoughts Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2002 Report Share Posted August 18, 2002 --- I never had " flying dreams " until I had fibro. I also have incidences where my mind is awake but my eyes won't open. I prefer the flying dreams to this experience. In @y..., Darcy Stockstill wrote: > > > reds_henry wrote: > > > >I have also had spells > > usually in the morning after daylight when I feel like I am awake but > > cannot open my eyes. I have also had spells where it feels like my > > whole body is shaking and I cannot open my eyes or move. I will > > eventually get myself awake but cannot fully wake up. I will open my > > eyes for a few seconds and then right back to sleep and do it again. > > I wonder if you're getting caught in the stage between awakeness and > sleep. I do what sounds like something very similar if not the same. > It's like the building is on fire/being robbed/ something desperate that > you *must* open your eyes for, but no matter how hard you try, you can't > get them open or just for a second, and then you're back to trying > again. I think it's where I'm starting to head into sleep, but am > conscious enough to know what's going on, but the paralyzing sleep > chemicals your body puts out are already present. That's what gives the > " I can't move " feeling, but since you're still partially awake, you're > fighting it. > Just my thoughts > Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2002 Report Share Posted August 18, 2002 --- I never had " flying dreams " until I had fibro. I also have incidences where my mind is awake but my eyes won't open. I prefer the flying dreams to this experience. In @y..., Darcy Stockstill wrote: > > > reds_henry wrote: > > > >I have also had spells > > usually in the morning after daylight when I feel like I am awake but > > cannot open my eyes. I have also had spells where it feels like my > > whole body is shaking and I cannot open my eyes or move. I will > > eventually get myself awake but cannot fully wake up. I will open my > > eyes for a few seconds and then right back to sleep and do it again. > > I wonder if you're getting caught in the stage between awakeness and > sleep. I do what sounds like something very similar if not the same. > It's like the building is on fire/being robbed/ something desperate that > you *must* open your eyes for, but no matter how hard you try, you can't > get them open or just for a second, and then you're back to trying > again. I think it's where I'm starting to head into sleep, but am > conscious enough to know what's going on, but the paralyzing sleep > chemicals your body puts out are already present. That's what gives the > " I can't move " feeling, but since you're still partially awake, you're > fighting it. > Just my thoughts > Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2002 Report Share Posted August 18, 2002 I have apena, narcolespy. Some of the issues you describe....sound like narcolespy dee Pray for me as I for you, And may God's hedge of protection surround you all. I am off line more than on. God Bless You All rugratturner@... (off line) dee --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2002 Report Share Posted August 18, 2002 I have apena, narcolespy. Some of the issues you describe....sound like narcolespy dee Pray for me as I for you, And may God's hedge of protection surround you all. I am off line more than on. God Bless You All rugratturner@... (off line) dee --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2002 Report Share Posted August 18, 2002 I have apena, narcolespy. Some of the issues you describe....sound like narcolespy dee Pray for me as I for you, And may God's hedge of protection surround you all. I am off line more than on. God Bless You All rugratturner@... (off line) dee --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2002 Report Share Posted August 18, 2002 Suzi: We are all suffering from sleep disorders as is very common with FMS/CFS. I have been through exactly what you and others are going through. Since I brought up the subject, I feel I should contribute what I know. I have webtv so when I am writing on the internet, I am laying in my recliner. When I fall asleep while writing an email, I too wake up to find that I wrote gibberish because we are in a sleep/wake state. I maybe sleep for 1/2 - 1 hour and during that time have written a gibberish email and had a nightmare, felt like I slept for hours and all that happened in maybe 1/2 hour. My new sleep clinic has explained to me that something in the brain where sleep is for some reason has broken down completely. They don't know why but when it breaks down, it is normal to develop hypnagogic hallucinations, the very real dreams and sleep paralysis where we are actually paralyzed in our sleep and the hallucinations and paralysis usually come together. Why it is so common with CFS/FMS, is not known because nothing is known about this illness. Forgetfulness about what happened during the day is short term memory loss which is again a symptom of FMS/CFS. I think your husband is quite selfish about your sleep problems and he is only aggravating your condition. I have to admit that I don't think anything except the proper treatment would help your sleep. I am not sure I can be helped at the sleep clinic but I have to try. I also have different forms of nightmares and I don't think we are able to get past the sleep state to sleep deep enough for these dreams to stop. I am so exhausted that I am sick everyday and never feel decent and sometimes when I sleep for 15-20 hours, I know it has to be due to total exhaustion but that is rare and not normal either. I will keep you all informed about what happens to me with the sleep clinic. andi << : I think I understand where you are at. For years I have been so sleepy that I can't read a book or watch tv. The minute I sit down I start to fall asleep. Often I fall asleep at the computer while I am typing and I snap awake and see that I have typed gibberish. Sometimes it takes me several minutes to write a small email and then I have to get up and find something else to do. In order to stay awake I have stayed on my feet never sitting down except of course to go to the bathroom! But staying on my feet for 10-14 hours per day has contributed to my constantly painful feet problems. I used to really enjoy reading, but I can't do it anymore. The second my head hits the pillow I am out like a light. The problem that I have is that I am constantly aware of my surroundings and never feel like I am asleep. My family is insistant on watching tv til all hours and no matter what room I try to lay down in it seems someone is watching tv. My husband gets mad if I shut off the tv or ask that it be shut off. He thinks I am being selfish even though I have tried to explain how hard it is for me to sleep proper with the tv on. What happens to me is that I dream about what's on tv, but in my dreams things get all messed up. Like the night that Roy died I dreampt that it was someone else. I can't remember who anymore, but I got up and told someone that this other person had died. See I can't even tell the difference often times if I am awake or asleep. I will dream conversations with my husband or children or other people and the next day I have to think very hard to try and decide if the conversations were real or not. Because I dream nearly all night every night I wake up feeling just exhausted and like I really did all the things in my dreams! I have some dreams that just come over and over and if I do wake up I just fall back to sleep and dream the same dreams with a hundred minor variances. Often times in my dreams I am completely aware that I am dreaming and I can manipulate the dreams and mak e them go any which way I want. It's very strange. Â Â Â Â Â Â Â Â The ironic thing is, that when I am awake late at night I can have a real conversation with someone and the next day they will tell me all about it and I won't remember. I had some very scary times when I was letting daycare children out. Their mothers would come in the middle of the night and I would forget that I let them out. A couple of times I had to call them in the middle of the night freaked at not remembering when I let them go home. Their mothers would tell me we stood there and had a conversations. I swear people I have never taken a drink in my life! Fortunately these mothers knew that I was sleep deprived and they trusted me. Sometimes my children or my husband would be up late watching tv so I could ask them if I let so and so out. Â Â Â Â Â Â Â Â Â Â My sleep disorder centers around getting up to go to the bathroom anywhere from 2-10 times per night. On top of that I will have to change my daughter at least once in the night. The cat will wake me up by stepping on my hair at least twice. My husband will fling his leg on me waking me up at least 2-3 times. The television or some freaky dream will wake me up 1-5 times per night. After years of answering the door I will wake up and still wonder if I have kids to let out or if my older kids need checked on. I sleep with my 2 year old so I don't have to worry over her, but I still do. Â Â Â Â Â Â Â Â For many years I tried sleeping in another room on the couch. But my husband always thinks I am mad at him and then our relationship gets all out of whack. I am trying really hard not to do that though I have slept on the couch a couple of times lately. I just wish my family knew how much I need real sleep! The other night I took a sleeping pill. I still woke up a lot of times, but I just felt horribly groggy when I needed to go to the bathroom and my mouth was dry. The next day I felt even more tired and groggy, so what's the point? Â Â Â Â Â Â Â Â I am pretty much convinced that these sleep issues have brought on my other problems. Â Â Â Â Â Â Â Â Funny thing is, I feel really good when I sleep. I love getting to the end of the day so I have a legitimate excuse to lay down. I would sleep during the day if I could, but my husband would also come unglued if I didn't get enough done. ttyl Suzi << Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2002 Report Share Posted August 18, 2002 Suzi: We are all suffering from sleep disorders as is very common with FMS/CFS. I have been through exactly what you and others are going through. Since I brought up the subject, I feel I should contribute what I know. I have webtv so when I am writing on the internet, I am laying in my recliner. When I fall asleep while writing an email, I too wake up to find that I wrote gibberish because we are in a sleep/wake state. I maybe sleep for 1/2 - 1 hour and during that time have written a gibberish email and had a nightmare, felt like I slept for hours and all that happened in maybe 1/2 hour. My new sleep clinic has explained to me that something in the brain where sleep is for some reason has broken down completely. They don't know why but when it breaks down, it is normal to develop hypnagogic hallucinations, the very real dreams and sleep paralysis where we are actually paralyzed in our sleep and the hallucinations and paralysis usually come together. Why it is so common with CFS/FMS, is not known because nothing is known about this illness. Forgetfulness about what happened during the day is short term memory loss which is again a symptom of FMS/CFS. I think your husband is quite selfish about your sleep problems and he is only aggravating your condition. I have to admit that I don't think anything except the proper treatment would help your sleep. I am not sure I can be helped at the sleep clinic but I have to try. I also have different forms of nightmares and I don't think we are able to get past the sleep state to sleep deep enough for these dreams to stop. I am so exhausted that I am sick everyday and never feel decent and sometimes when I sleep for 15-20 hours, I know it has to be due to total exhaustion but that is rare and not normal either. I will keep you all informed about what happens to me with the sleep clinic. andi << : I think I understand where you are at. For years I have been so sleepy that I can't read a book or watch tv. The minute I sit down I start to fall asleep. Often I fall asleep at the computer while I am typing and I snap awake and see that I have typed gibberish. Sometimes it takes me several minutes to write a small email and then I have to get up and find something else to do. In order to stay awake I have stayed on my feet never sitting down except of course to go to the bathroom! But staying on my feet for 10-14 hours per day has contributed to my constantly painful feet problems. I used to really enjoy reading, but I can't do it anymore. The second my head hits the pillow I am out like a light. The problem that I have is that I am constantly aware of my surroundings and never feel like I am asleep. My family is insistant on watching tv til all hours and no matter what room I try to lay down in it seems someone is watching tv. My husband gets mad if I shut off the tv or ask that it be shut off. He thinks I am being selfish even though I have tried to explain how hard it is for me to sleep proper with the tv on. What happens to me is that I dream about what's on tv, but in my dreams things get all messed up. Like the night that Roy died I dreampt that it was someone else. I can't remember who anymore, but I got up and told someone that this other person had died. See I can't even tell the difference often times if I am awake or asleep. I will dream conversations with my husband or children or other people and the next day I have to think very hard to try and decide if the conversations were real or not. Because I dream nearly all night every night I wake up feeling just exhausted and like I really did all the things in my dreams! I have some dreams that just come over and over and if I do wake up I just fall back to sleep and dream the same dreams with a hundred minor variances. Often times in my dreams I am completely aware that I am dreaming and I can manipulate the dreams and mak e them go any which way I want. It's very strange. Â Â Â Â Â Â Â Â The ironic thing is, that when I am awake late at night I can have a real conversation with someone and the next day they will tell me all about it and I won't remember. I had some very scary times when I was letting daycare children out. Their mothers would come in the middle of the night and I would forget that I let them out. A couple of times I had to call them in the middle of the night freaked at not remembering when I let them go home. Their mothers would tell me we stood there and had a conversations. I swear people I have never taken a drink in my life! Fortunately these mothers knew that I was sleep deprived and they trusted me. Sometimes my children or my husband would be up late watching tv so I could ask them if I let so and so out. Â Â Â Â Â Â Â Â Â Â My sleep disorder centers around getting up to go to the bathroom anywhere from 2-10 times per night. On top of that I will have to change my daughter at least once in the night. The cat will wake me up by stepping on my hair at least twice. My husband will fling his leg on me waking me up at least 2-3 times. The television or some freaky dream will wake me up 1-5 times per night. After years of answering the door I will wake up and still wonder if I have kids to let out or if my older kids need checked on. I sleep with my 2 year old so I don't have to worry over her, but I still do. Â Â Â Â Â Â Â Â For many years I tried sleeping in another room on the couch. But my husband always thinks I am mad at him and then our relationship gets all out of whack. I am trying really hard not to do that though I have slept on the couch a couple of times lately. I just wish my family knew how much I need real sleep! The other night I took a sleeping pill. I still woke up a lot of times, but I just felt horribly groggy when I needed to go to the bathroom and my mouth was dry. The next day I felt even more tired and groggy, so what's the point? Â Â Â Â Â Â Â Â I am pretty much convinced that these sleep issues have brought on my other problems. Â Â Â Â Â Â Â Â Funny thing is, I feel really good when I sleep. I love getting to the end of the day so I have a legitimate excuse to lay down. I would sleep during the day if I could, but my husband would also come unglued if I didn't get enough done. ttyl Suzi << Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2002 Report Share Posted August 18, 2002 Hi Charity: My previous sleep study came out inconclusive. I did find out I had Restless Leg Sydrome and Periodic Limb Movements and that I slept excellent. That was the funniest one. They charged Medicare $5,000 which they didn't pay and only paid $2,000 and they did nothing for me. I am at a new sleep clinic. I think if they want you to do a new sleep study, they should eat up the cost because they didn't do something right. I would never go back there even if you decide to go back for one. I have two cousins with sleep apnea and they show up very clearly. Narcolepsy is a possibility and they were very careless to let you leave and drive thinking you may have Narcolepsy. Because I pushed myself for years at work, due to there not being a diagnosis called CFS/FMS, I finally completely broke down. I was so deathly sick with two years of bronchitis and pneumonia that when I finally went on SSDI and had to stop working, as sick as I was, I realized I should have stopped working years before but I could not get SSDI. If you have CFS/FMS, you may be overdoing it by still working and stressing yourself out. I am very frightened when you talk about driving and narcolepsy. I have a good idea. This is what I did now. Why not try a consultation with another sleep clinic. No sleep study, just a consultation. Where I am now which is one of the top hospitals in NYC, it took them 3 days to get my full history because I became so complicated of so many years of illness. The first hour visit I went to the city for. Then I became so sick from the trip that they were kind enough to understand and they did the other two hours over the phone. I am not going for another study because we know what showed up. Not every sleep disorder requires a sleep study. I don't think your sleep study was done properly or they may not even be certified. Anywhere you go, make sure of their reputation and that they are certified. Good luck!! Andi << Hi Andi, AAAAH, stupid sleep tests! I agree, I never, ever want to do one again! Unfortunately, my results came back inconclusive and they want me to do another one. It would cost me over $2000 to have another sleep test taken and there is no way I can handle that right now. Â Â My doctor thinks I have either sleep apnea or narcolepsy and/or cronic fatigue... So far all tests are inconclusive and I am very frusterated. I fall asleep driving half the time and lately I've been so tired I fall asleep in meetings at work!! That is so incredibly embarrassing and makes me look horrible, especially since I just started this job not too long ago!! *sigh* Charity >> Quote Link to comment Share on other sites More sharing options...
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