Guest guest Posted November 27, 2001 Report Share Posted November 27, 2001 Greetings Jim & Peg! Thank you for presenting information about Peg's sleep study. You noted: > Still the electrodes weren't measuring anything > unusual except snoring. While we continue to > agree with JBF that sleep studies can be important > for Multiple System Atrophy patients, perhaps Peg > is an exception to the rule. Actually, I don't think so. The lack of apnea events rules out this as an fundamental cause of sleep disturbance. Knowing what the problem is NOT can be just as important as knowing what the problem IS. In the previous two sentences, you also noted: > Interestingly Peg showed all the problems she > normally has except perhaps the 4:00 AM problems > - difficulty in getting to sleep, having to get > up three or four times to urinate, screaming in > the middle of the night, etc. etc. The technician > said she had never seen anyone sleep like her. First, the technicians observations that " she had never seen anyone sleep like her " is telling. This subjective input is provided to the doctor along with all the subjective input from the sleep study. The subjective input .. the input from those electrodes. For example, during my last sleep study, a very experienced technician discovered that even with CPAP, I could not attain good sleep. He decided to switch to BiPAP (Bi-Level Positive Airway Pressure). It showed improvement. But at the time he could not quantify why. However, when I saw the sleep specialist a few days later, he was able to show me a report produced by the sleep lab that demonstrated why. It was clear on the sleep cycle graph that I was unable to attain deeper levels of sleep until the technician switched to BiPAP. Jim, you noted: > We visited the doctor a few days after the sleep > study and talked with him. Why not the next day? It could be arranged. The answer is the sleep lab needed to reduce the mountain of information into a fairly standard report that showed Peg's progression through sleep. It includes subjective and objective data. With that information in hand (even if the doctor did not show it to you), he was probably wondering what things might cause problems with sleep. His experience with PD and probable experience with (or at least study of) Parkinson's Plus syndromes, he probably knew to look at medications as a possible factor. But it sounds as if he is good at using diagnostic techniques. He asked plenty of questions to uncover her history (medical and medicinal). From this he could rule out other contributing factors and focus down onto his assumption. You also noted: > The other caveat is that while snoring and throat > blockages can lead to sleep apnea, there apparently > is a rarer kind of apnea that is neurologically > caused and doesn't always show itself. Sigh! This was definitely the case for me. The two types of sleep apnea are obstructive and central sleep apnea. Obstructive Sleep Apnea (OSA) results from an obstruction to the airway. It is very common. Fortunately, it can also be readily managed with CPAP / BiPAP. Sometimes additional measures are needed to correct the problems, but that is rather unusual. Central Sleep Apnea (CSA) is EXTREMELY rare and results from problems in the central nervous system. More specifically in the autonomic nervous system. Ouch! Does that sound familiar? What can be more automatic than breathing while asleep. Unfortunately, it does sometimes go awry. But it is VERY rare. Though obstructive sleep apnea is a concern, central sleep apnea is more of a concern for MSA patients. It is not accompanied with snoring. So there are no tell-tale signs. Just the cessation of breathing. Sometimes a sleep study can uncover a pattern of central sleep apnea. Often it does not. Jim, you noted that: > about 4:00 AM every morning Peg seemed to go through > some kind of spell which included difficulty breathing. This probably coincides with her deepest levels of sleep. While I my sleep problems got very bad, I would also have episodes of central apneas. My wife observed that I would simply fail to even initiate the inspiration breath. With an obstructive event, I would try .. even to the point of almost seeming as if I was attempting to regurgitate .. the muscle movements are similar. Of course, being in a sleep lab means that you just don't sleep as soundly as normal, so I did not attain the deep sleep that appeared to also come with those 'fail to even initiate' events. So, the central apnea was not present in the sleep study report. What's the good news? Well, once I got my other sleep problems under control, the problems with the central apneas also decreased. My wife notes it still happens sometimes. But not with the frequency, nor duration as before. I suspect this is just another way that stress can magnify symptoms. And the stress of not sleeping well can have serious consequences. WARNING: Please remember, most of this is SPECULATION based on my own experience. Yes, I did lots of reading, and talked with folks with central sleep apnea. But remember, I am not a physician. So anyone with sleep problems, discuss ONLY the SYMPTOMS with a physician .. let the physician sort out all the extraneous stuff. At this point, my problem does not appear to be advancing and has improved with better sleep. Jim, I guess my advice from here would be to monitor her through sleep as she starts to sleep more effectively. Hopefully, Peg will also have a similar experience .. that is as the overall quality increases, her 4 AM events will decrease. Oh yes. A final few thoughts: Central sleep apnea is very rare. Sometimes it takes a concerned and assertive team of patient and spouse to convince the doctor that something is wrong. Central sleep apnea typically occurs during any level of sleep. But as I've noted, other sleep disturbance problems can arise during very deep sleep. One way to overcome lighter sleep when in the hospital is to request an in-home test. This will perhaps let the patient sleep more soundly. Our breathing reflexes is complex. Complex in that several different processes are involved. The amount of CO2 in our blood not only drives breath. It also drives the amount of air we breathe. Also you will note a pattern to breathing while asleep. There is always a series of breaths, followed by a pause then a deep breath. The pause, then deep breath is normal and helps us maintain properly inflated lungs. Our breathing reflexes is also extremely well guarded by the body. Breathing is preprogrammed into the body. We don't have to learn it. We just do it. Failure in this mechanism leads to very early death. Some researchers now think SIDS is essentially a failure of this mechanism. Even when the rest of the autonomic nervous system is under attack, this is one of the last to succumb. Unfortunately, though central sleep apnea may contribute to death in MSA patients it can be one of the most difficult symptoms to detect and treat. Ventilation support during sleep may be required. But by that point many patients are simply tired of the fight, and look forward to moving forward. Sorry everyone for this very long note. But thought it might help some that struggle with sleep. It is VITAL for MSA patients (really any patient with a neurological problem) to get proper sleep. Length does not count. It must be effective. Seeing a sleep specialist can be a vital step in that direction. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2001 Report Share Posted November 27, 2001 Greetings Jim & Peg! Thank you for presenting information about Peg's sleep study. You noted: > Still the electrodes weren't measuring anything > unusual except snoring. While we continue to > agree with JBF that sleep studies can be important > for Multiple System Atrophy patients, perhaps Peg > is an exception to the rule. Actually, I don't think so. The lack of apnea events rules out this as an fundamental cause of sleep disturbance. Knowing what the problem is NOT can be just as important as knowing what the problem IS. In the previous two sentences, you also noted: > Interestingly Peg showed all the problems she > normally has except perhaps the 4:00 AM problems > - difficulty in getting to sleep, having to get > up three or four times to urinate, screaming in > the middle of the night, etc. etc. The technician > said she had never seen anyone sleep like her. First, the technicians observations that " she had never seen anyone sleep like her " is telling. This subjective input is provided to the doctor along with all the subjective input from the sleep study. The subjective input .. the input from those electrodes. For example, during my last sleep study, a very experienced technician discovered that even with CPAP, I could not attain good sleep. He decided to switch to BiPAP (Bi-Level Positive Airway Pressure). It showed improvement. But at the time he could not quantify why. However, when I saw the sleep specialist a few days later, he was able to show me a report produced by the sleep lab that demonstrated why. It was clear on the sleep cycle graph that I was unable to attain deeper levels of sleep until the technician switched to BiPAP. Jim, you noted: > We visited the doctor a few days after the sleep > study and talked with him. Why not the next day? It could be arranged. The answer is the sleep lab needed to reduce the mountain of information into a fairly standard report that showed Peg's progression through sleep. It includes subjective and objective data. With that information in hand (even if the doctor did not show it to you), he was probably wondering what things might cause problems with sleep. His experience with PD and probable experience with (or at least study of) Parkinson's Plus syndromes, he probably knew to look at medications as a possible factor. But it sounds as if he is good at using diagnostic techniques. He asked plenty of questions to uncover her history (medical and medicinal). From this he could rule out other contributing factors and focus down onto his assumption. You also noted: > The other caveat is that while snoring and throat > blockages can lead to sleep apnea, there apparently > is a rarer kind of apnea that is neurologically > caused and doesn't always show itself. Sigh! This was definitely the case for me. The two types of sleep apnea are obstructive and central sleep apnea. Obstructive Sleep Apnea (OSA) results from an obstruction to the airway. It is very common. Fortunately, it can also be readily managed with CPAP / BiPAP. Sometimes additional measures are needed to correct the problems, but that is rather unusual. Central Sleep Apnea (CSA) is EXTREMELY rare and results from problems in the central nervous system. More specifically in the autonomic nervous system. Ouch! Does that sound familiar? What can be more automatic than breathing while asleep. Unfortunately, it does sometimes go awry. But it is VERY rare. Though obstructive sleep apnea is a concern, central sleep apnea is more of a concern for MSA patients. It is not accompanied with snoring. So there are no tell-tale signs. Just the cessation of breathing. Sometimes a sleep study can uncover a pattern of central sleep apnea. Often it does not. Jim, you noted that: > about 4:00 AM every morning Peg seemed to go through > some kind of spell which included difficulty breathing. This probably coincides with her deepest levels of sleep. While I my sleep problems got very bad, I would also have episodes of central apneas. My wife observed that I would simply fail to even initiate the inspiration breath. With an obstructive event, I would try .. even to the point of almost seeming as if I was attempting to regurgitate .. the muscle movements are similar. Of course, being in a sleep lab means that you just don't sleep as soundly as normal, so I did not attain the deep sleep that appeared to also come with those 'fail to even initiate' events. So, the central apnea was not present in the sleep study report. What's the good news? Well, once I got my other sleep problems under control, the problems with the central apneas also decreased. My wife notes it still happens sometimes. But not with the frequency, nor duration as before. I suspect this is just another way that stress can magnify symptoms. And the stress of not sleeping well can have serious consequences. WARNING: Please remember, most of this is SPECULATION based on my own experience. Yes, I did lots of reading, and talked with folks with central sleep apnea. But remember, I am not a physician. So anyone with sleep problems, discuss ONLY the SYMPTOMS with a physician .. let the physician sort out all the extraneous stuff. At this point, my problem does not appear to be advancing and has improved with better sleep. Jim, I guess my advice from here would be to monitor her through sleep as she starts to sleep more effectively. Hopefully, Peg will also have a similar experience .. that is as the overall quality increases, her 4 AM events will decrease. Oh yes. A final few thoughts: Central sleep apnea is very rare. Sometimes it takes a concerned and assertive team of patient and spouse to convince the doctor that something is wrong. Central sleep apnea typically occurs during any level of sleep. But as I've noted, other sleep disturbance problems can arise during very deep sleep. One way to overcome lighter sleep when in the hospital is to request an in-home test. This will perhaps let the patient sleep more soundly. Our breathing reflexes is complex. Complex in that several different processes are involved. The amount of CO2 in our blood not only drives breath. It also drives the amount of air we breathe. Also you will note a pattern to breathing while asleep. There is always a series of breaths, followed by a pause then a deep breath. The pause, then deep breath is normal and helps us maintain properly inflated lungs. Our breathing reflexes is also extremely well guarded by the body. Breathing is preprogrammed into the body. We don't have to learn it. We just do it. Failure in this mechanism leads to very early death. Some researchers now think SIDS is essentially a failure of this mechanism. Even when the rest of the autonomic nervous system is under attack, this is one of the last to succumb. Unfortunately, though central sleep apnea may contribute to death in MSA patients it can be one of the most difficult symptoms to detect and treat. Ventilation support during sleep may be required. But by that point many patients are simply tired of the fight, and look forward to moving forward. Sorry everyone for this very long note. But thought it might help some that struggle with sleep. It is VITAL for MSA patients (really any patient with a neurological problem) to get proper sleep. Length does not count. It must be effective. Seeing a sleep specialist can be a vital step in that direction. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2001 Report Share Posted November 27, 2001 Greetings Jim & Peg! Thank you for presenting information about Peg's sleep study. You noted: > Still the electrodes weren't measuring anything > unusual except snoring. While we continue to > agree with JBF that sleep studies can be important > for Multiple System Atrophy patients, perhaps Peg > is an exception to the rule. Actually, I don't think so. The lack of apnea events rules out this as an fundamental cause of sleep disturbance. Knowing what the problem is NOT can be just as important as knowing what the problem IS. In the previous two sentences, you also noted: > Interestingly Peg showed all the problems she > normally has except perhaps the 4:00 AM problems > - difficulty in getting to sleep, having to get > up three or four times to urinate, screaming in > the middle of the night, etc. etc. The technician > said she had never seen anyone sleep like her. First, the technicians observations that " she had never seen anyone sleep like her " is telling. This subjective input is provided to the doctor along with all the subjective input from the sleep study. The subjective input .. the input from those electrodes. For example, during my last sleep study, a very experienced technician discovered that even with CPAP, I could not attain good sleep. He decided to switch to BiPAP (Bi-Level Positive Airway Pressure). It showed improvement. But at the time he could not quantify why. However, when I saw the sleep specialist a few days later, he was able to show me a report produced by the sleep lab that demonstrated why. It was clear on the sleep cycle graph that I was unable to attain deeper levels of sleep until the technician switched to BiPAP. Jim, you noted: > We visited the doctor a few days after the sleep > study and talked with him. Why not the next day? It could be arranged. The answer is the sleep lab needed to reduce the mountain of information into a fairly standard report that showed Peg's progression through sleep. It includes subjective and objective data. With that information in hand (even if the doctor did not show it to you), he was probably wondering what things might cause problems with sleep. His experience with PD and probable experience with (or at least study of) Parkinson's Plus syndromes, he probably knew to look at medications as a possible factor. But it sounds as if he is good at using diagnostic techniques. He asked plenty of questions to uncover her history (medical and medicinal). From this he could rule out other contributing factors and focus down onto his assumption. You also noted: > The other caveat is that while snoring and throat > blockages can lead to sleep apnea, there apparently > is a rarer kind of apnea that is neurologically > caused and doesn't always show itself. Sigh! This was definitely the case for me. The two types of sleep apnea are obstructive and central sleep apnea. Obstructive Sleep Apnea (OSA) results from an obstruction to the airway. It is very common. Fortunately, it can also be readily managed with CPAP / BiPAP. Sometimes additional measures are needed to correct the problems, but that is rather unusual. Central Sleep Apnea (CSA) is EXTREMELY rare and results from problems in the central nervous system. More specifically in the autonomic nervous system. Ouch! Does that sound familiar? What can be more automatic than breathing while asleep. Unfortunately, it does sometimes go awry. But it is VERY rare. Though obstructive sleep apnea is a concern, central sleep apnea is more of a concern for MSA patients. It is not accompanied with snoring. So there are no tell-tale signs. Just the cessation of breathing. Sometimes a sleep study can uncover a pattern of central sleep apnea. Often it does not. Jim, you noted that: > about 4:00 AM every morning Peg seemed to go through > some kind of spell which included difficulty breathing. This probably coincides with her deepest levels of sleep. While I my sleep problems got very bad, I would also have episodes of central apneas. My wife observed that I would simply fail to even initiate the inspiration breath. With an obstructive event, I would try .. even to the point of almost seeming as if I was attempting to regurgitate .. the muscle movements are similar. Of course, being in a sleep lab means that you just don't sleep as soundly as normal, so I did not attain the deep sleep that appeared to also come with those 'fail to even initiate' events. So, the central apnea was not present in the sleep study report. What's the good news? Well, once I got my other sleep problems under control, the problems with the central apneas also decreased. My wife notes it still happens sometimes. But not with the frequency, nor duration as before. I suspect this is just another way that stress can magnify symptoms. And the stress of not sleeping well can have serious consequences. WARNING: Please remember, most of this is SPECULATION based on my own experience. Yes, I did lots of reading, and talked with folks with central sleep apnea. But remember, I am not a physician. So anyone with sleep problems, discuss ONLY the SYMPTOMS with a physician .. let the physician sort out all the extraneous stuff. At this point, my problem does not appear to be advancing and has improved with better sleep. Jim, I guess my advice from here would be to monitor her through sleep as she starts to sleep more effectively. Hopefully, Peg will also have a similar experience .. that is as the overall quality increases, her 4 AM events will decrease. Oh yes. A final few thoughts: Central sleep apnea is very rare. Sometimes it takes a concerned and assertive team of patient and spouse to convince the doctor that something is wrong. Central sleep apnea typically occurs during any level of sleep. But as I've noted, other sleep disturbance problems can arise during very deep sleep. One way to overcome lighter sleep when in the hospital is to request an in-home test. This will perhaps let the patient sleep more soundly. Our breathing reflexes is complex. Complex in that several different processes are involved. The amount of CO2 in our blood not only drives breath. It also drives the amount of air we breathe. Also you will note a pattern to breathing while asleep. There is always a series of breaths, followed by a pause then a deep breath. The pause, then deep breath is normal and helps us maintain properly inflated lungs. Our breathing reflexes is also extremely well guarded by the body. Breathing is preprogrammed into the body. We don't have to learn it. We just do it. Failure in this mechanism leads to very early death. Some researchers now think SIDS is essentially a failure of this mechanism. Even when the rest of the autonomic nervous system is under attack, this is one of the last to succumb. Unfortunately, though central sleep apnea may contribute to death in MSA patients it can be one of the most difficult symptoms to detect and treat. Ventilation support during sleep may be required. But by that point many patients are simply tired of the fight, and look forward to moving forward. Sorry everyone for this very long note. But thought it might help some that struggle with sleep. It is VITAL for MSA patients (really any patient with a neurological problem) to get proper sleep. Length does not count. It must be effective. Seeing a sleep specialist can be a vital step in that direction. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2003 Report Share Posted July 18, 2003 Wolfie, I went for my sleep study and it was SO FUNNY! They hook you up to like a million electrodes. They put cream in your hair and put electrodes to monitor your brain waves and they put electrodes all over your face and neck and on your legs and around your chest and on your stomach. They video tape you sleeping and speak to you over the intercome whenever they want something. It was a nightmare for me because I can only sleep on my tummy and I weigh too much for the monitors to be able to read anything when I was on my tummy. If you can make sure you take a camera with you and have them take a picture of you. You look like a space person whose just escaped from a mental assylum . If they won't take a picture of you then go to the bathroom and look at yourself in the mirror. At least you will have a good laugh! GOOD LUCK! And don't be shy to ask for whatever you need. My room was like a hotel room and the aircondition was nice and cool and I had tons of pillows I didn't need anything but if you need something ASK for it! Vicky > well the 22nd I go for my sleep study. Then the nutritionist and Ill be on my > way. I just hope and pray I will not have any problems with the sleep study > but if I do I just have to take it in stride and go forward with it. I have an > angel that will be with me and help me out so I am relieved about that. Sure > do hope this happens quickly. I am ready to get on the losing side! > WOLFIE > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2003 Report Share Posted July 19, 2003 In a message dated 7/19/2003 12:37:54 AM Central Standard Time, ravigold@... writes: > GOOD LUCK! And don't be shy to ask for whatever you need. My room > was like a hotel room and the aircondition was nice and cool and I > had tons of pillows I didn't need anything but if you need something > ASK for it! > > Vicky > Hey Vicky, Read your post and got so tickled. I usually sleep on my side but I prefer to sleep on my tummy. They will have to give me something to sleep I sure. I cannot imagine having all those wires hooked up to me. But one thing for sure it cannot be near as stressful as the bs i have had to endure for the last month. lol. But thats another story in and of itself, lol. Take care girl and thanks for the early morning laugh. WOLFIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2003 Report Share Posted July 19, 2003 > Hey Vicky, > Read your post and got so tickled. I usually sleep on my side but I > prefer to sleep on my tummy. They will have to give me something to sleep I sure. > I cannot imagine having all those wires hooked up to me. But one thing for > sure it cannot be near as stressful as the bs i have had to endure for the last > month. lol. But thats another story in and of itself, lol. Take care girl and > thanks for the early morning laugh. WOLFIE > Hi Wolfie, I am having my sleep study on the 30th. It is the last pre-op reguirement (FINALLY!!!!) and I'm not much looking forward to it either. Vickie's post eased my mind about the whole thing, but I'm wondering how to prepare. Should I not sleep much the night before so that I am super tired? Or will they give me something to help me sleep? I wish I didn't have to go through it, I really don't think I have sleep apnea but I guess they have to be double-sure. I don't sleep on my stomach, so I don't have to worry about that issue. BTW - that's probably a habit you'll have to break by surgery time anyway LOL. I will be anxious to hear how your test goes. Let us know! Quote Link to comment Share on other sites More sharing options...
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