This is my first post. Nearly two years ago I was totally incapacitated with daily, severe fatigue. I am currently on disability with my company as an airline pilot. I have not worked since April of 2003. I was finally diagnosed with Upper Airway Resistance Syndrome (UARS) in December 2003. Treatment with cpap and indicated surgeries gave some relief. During the past year while using cpap and submitting to surgery to open the upper airway, I ignored an increasingly problematic sensation in my right calf. The sensations were intermittent and mild initially but were rapidly becoming more frequent and severe. Ultimately it could no longer be denied (key word). I had been referred to this web site by sleepnet.com. After spending time reading this site, I realized in addition to UARS, I also had rls.
This was confirmed by my gp in October 2004. He prescribed .5 mg of klonopin. I did not like this med for several reasons. While I slept more soundly and had more energy, it gave me a mental/drug hangover affect. I also began to feel a psychological dependency towards this drug; as a recovered alcoholic for 28 years, I was paranoid about long term use. When I discontinued it's use, I experienced increased insomnia.
In December 2004 I had an appointment with a sleep physician that is a neurologist. She prescribed 300 mg of Neurontin at bedtime. This had a significant and positive impact on my ability to sleep and improved my fatigue levels overall. Specifically it diminished the rls sensation in my calf and improved the soundness of my sleep.
Unfortunately, I am still not experiencing 100% recuperative sleep. While I have been able to increase my levels of exertion mental and physical with the Neurontin, I am still limited by fatigue that is less severe. The residual rls sensations that I now experience in my right calf seem insufficient to preclude sleep onset or sleep maintenance. I have noticed that I continue to experience this lesser fatigue even in the complete absence of rls sensations in my right calf over periods of several weeks.
Is it possible that rls can continue to precipitate degraded sleep function in lieu of the absent rls sensations in my calf over protracted periods with the use of Neurontin? If yes, would a higher dosage of Neurontin rectify this?
During the current period of treatment with Neurontin, I have begun to realize that physical and emotional exhaustion can bring on the rls sensation in my calf . I assume this was happening before; I am just now making the connection . Additionally, prior to the onset of the fatigue, exercise enhanced the soundness of my sleep; now when I am fatigued and I exercise the soundness of sleep is diminished. Also, I have had since childhood a predisposition towards transient insomnia brought on by stress or excitement. It seems to me that this inclination towards transient insomnia worsened after the onset of the fatigue. Are any of the aforementioned variables related to or precipitated by rls? It is logical to me that they at a minimum complicate rls.
Prior to the onset of the severe fatigue, I had been running about 3 days a week with a clinical psychologist. Additionally, I completed psycho therapy last year with a different clinical psychologist for issues relating to childhood sexual abuse. Both psychologists indicate they do not think my fatigue and sleep issues are related to depression. However, I suffer reactive depression due to the interruption the fatigue has imposed on my quality of life. After reading postings on this web site, I do not need to go into detail about that.
I know this is a lot, but I would appreciate any insight or information as it relates to my experience.
I am improved with Neurontin but not 100%
Welcome wbfann
It's Jan
I'm glad you four our support site, but sorry you have RLS. I've suffered from it for over 25 years.
Frankly, your symptoms sound typical. We are all different and RLS effects each of us differently, but there are certain things we all have in common. Let me address each of your questions separately.
I take Klonopin and have for over five years. I understand, given your situation, why you are hesitant to continue with this drug. However, it works for me. And, yes, it is somewhat addictive, but I had to weigh quality of life against developing an addiction to a drug for a syndrome that is incurable. I chose the drug. I am also on Mirapex, a dopamine antagonist. As far as Neurontin, I know many people have good luck with that drug. Concerning the fact that you have trouble sleeping even on Neurontin, have you had a sleep study done? Have you heard of PLMD? That is periodic limb movement disorder. After falling asleep, your legs could continue to jerk or kick. My husband has counted to 20, and every 20 seconds for at least a half hour, my legs will jerk or kick, after I fall asleep. Obviously, PLMD will interfere with you getting restorative sleep.
I also know that exercise can exacerbate RLS, especially exercise at night. On the pull down menus at the top of this page, you will find a link to the So. California Support Group. There is a free medical card which you can download. This card has listed quite a few drugs that exacerbate RLS and drugs which can be substitute. This is very important! You should carry this card with you at all times. I know from experience, having had gall bladder surgery, that even the drugs given in pre-op made my legs go crazy! You need to know what you can and cannot take and make sure you give this information to your physician.
Again, welcome to this site. There are many people here who are willing to help you in any way they can. Some of us have been around for quite awhile, but we sitll learn from everyone! We're a family here, and you've found a home. I hope you stay!
Jan
I'm glad you four our support site, but sorry you have RLS. I've suffered from it for over 25 years.
Frankly, your symptoms sound typical. We are all different and RLS effects each of us differently, but there are certain things we all have in common. Let me address each of your questions separately.
I take Klonopin and have for over five years. I understand, given your situation, why you are hesitant to continue with this drug. However, it works for me. And, yes, it is somewhat addictive, but I had to weigh quality of life against developing an addiction to a drug for a syndrome that is incurable. I chose the drug. I am also on Mirapex, a dopamine antagonist. As far as Neurontin, I know many people have good luck with that drug. Concerning the fact that you have trouble sleeping even on Neurontin, have you had a sleep study done? Have you heard of PLMD? That is periodic limb movement disorder. After falling asleep, your legs could continue to jerk or kick. My husband has counted to 20, and every 20 seconds for at least a half hour, my legs will jerk or kick, after I fall asleep. Obviously, PLMD will interfere with you getting restorative sleep.
I also know that exercise can exacerbate RLS, especially exercise at night. On the pull down menus at the top of this page, you will find a link to the So. California Support Group. There is a free medical card which you can download. This card has listed quite a few drugs that exacerbate RLS and drugs which can be substitute. This is very important! You should carry this card with you at all times. I know from experience, having had gall bladder surgery, that even the drugs given in pre-op made my legs go crazy! You need to know what you can and cannot take and make sure you give this information to your physician.
Again, welcome to this site. There are many people here who are willing to help you in any way they can. Some of us have been around for quite awhile, but we sitll learn from everyone! We're a family here, and you've found a home. I hope you stay!
Jan
No one is alone who had friends.
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cornelia
Welcome to the group!
I agree with Jan: the first important thing to do is have a sleep study done
and educate yourself on this disorder, because docters don't often know about it, or not enough and in a lot of cases the educated patient knows more. Be adamant about the sleep study!
I myself am on Neurontin, together with Requip. In daytime on Tramadol, as I have 24/7 RLS and lost my job of it. After having read many posts I found out that Neurontin is most of the times used as an add-on.
When you visit your docter take with you the RLS-Algorythm: this is very important! It will show him/her what meds are the best for RLS. This is a difficult disorder, because we have to be treated differently and find the right combo through trial and error. The Algorythm can befound on this board actually.
I think you have so much to gain. Once you are on the right meds for you you feel much better. I myself was extremely fatigued, but not anymore.
So good luck to you and pls let us know about how you are doing.
Corrie
I agree with Jan: the first important thing to do is have a sleep study done
and educate yourself on this disorder, because docters don't often know about it, or not enough and in a lot of cases the educated patient knows more. Be adamant about the sleep study!
I myself am on Neurontin, together with Requip. In daytime on Tramadol, as I have 24/7 RLS and lost my job of it. After having read many posts I found out that Neurontin is most of the times used as an add-on.
When you visit your docter take with you the RLS-Algorythm: this is very important! It will show him/her what meds are the best for RLS. This is a difficult disorder, because we have to be treated differently and find the right combo through trial and error. The Algorythm can befound on this board actually.
I think you have so much to gain. Once you are on the right meds for you you feel much better. I myself was extremely fatigued, but not anymore.
So good luck to you and pls let us know about how you are doing.
Corrie
Jan and Corrie, Thanks for the reply. I had three sleep studies in 2003. None of them indicated PLM. The first was a waste of money as they were not set up to diagnose UARS. The second study diagnosed UARS and the third was a titration. I know it is possible that PLM has developed since Dec 2003 when I had the titration study. In fact, I have on occasion in the past year had the bizarre experience where I have awaken because my bed was rocking. At first I was afraid someone had broken into my house and had bumped the bed. Then I began to be only slightly aware of the fact my body had jerked just prior to the bed rocking. But this has only happened to me a handful of times that I can remember. The few nights that I remember this happening there were multiple episodes during the night. I know it could be happening more frequently without my awareness.
Because of two surgeries on my throat, tongue and nose since that titration study, the surgeon has ordered a diagnostic sleep study to measure the results of the surgery. The study will be done in May. With UARS and RLS, it is difficult for me to sort out which is having the greater impact on my sleep. The sleep study in May should help. I don't do well on cpap, but continue to use it because I seem to deteriorate without it. I switch between that and an oral appliance to help with tolerance problems with the cpap mask.
Since taking the klonopin and neurontin, I am convinced that the failure of my treatment for UARS as indicated by continued fatigue had more to do with RLS than it did with inadequate treatment for UARS.
I have reviewed the Algorithm and I will take it along to my next appointment with the sleep physician, which is already scheduled later this month.
I am having a difficult time accepting the fact that my continued failure to get good recuperative sleep is solely due to the RLS. I never had daily RLS. It was periodic. It was however becoming more intense and frequent. I am surprised by continued fatigue even on days when the night before I was not feeling the RLS in my leg. Is there any insight that someone can give me on this? I keep thinking because the fatigue has continued after nights when there was no RLS sensation that I must have other problems the Doctors have missed.
This has been a very traumatic experience for me overall as I know it has been for all of you. Before the chronic fatigue began in 2003 I was a captain with a major airline, I owned and flew my own aerobatic airplane, I flew gliders, skied advanced to intermediate, rode mountain bikes, back packed and fly fished, ran 6 miles three days a week at an eight minute pace and lifted weights twice a week. Physical activity and recreation defined my being. Losing the capacity to exercise these activities feels like losing my life. In fact the reason I am on this web site is because I am at Tahoe trying to ski. I am extremely depressed with my inability to ski anything but beginning and intermediate runs for two half days out of seven days. The two half days I skied back to back at a fairly aggressive level has taken me four nights to recover. This roller coaster of hope and despair at times seems more than I can take. Fortunately I have a loving, understanding wife that can listen and empathize. I am on this web site because I feel like I need more. Because of my overall healthy lifestyle, I never dreamed that in my early fifties I would become what feels like to me as being a physical , mental and emotional invalid. I do hope I can find a combination of medications which will give me normal energy levels. I think now that is my best hope. Unfortunately the medications will preclude an FAA physical and flying professionally as well as recreationally.
Because of two surgeries on my throat, tongue and nose since that titration study, the surgeon has ordered a diagnostic sleep study to measure the results of the surgery. The study will be done in May. With UARS and RLS, it is difficult for me to sort out which is having the greater impact on my sleep. The sleep study in May should help. I don't do well on cpap, but continue to use it because I seem to deteriorate without it. I switch between that and an oral appliance to help with tolerance problems with the cpap mask.
Since taking the klonopin and neurontin, I am convinced that the failure of my treatment for UARS as indicated by continued fatigue had more to do with RLS than it did with inadequate treatment for UARS.
I have reviewed the Algorithm and I will take it along to my next appointment with the sleep physician, which is already scheduled later this month.
I am having a difficult time accepting the fact that my continued failure to get good recuperative sleep is solely due to the RLS. I never had daily RLS. It was periodic. It was however becoming more intense and frequent. I am surprised by continued fatigue even on days when the night before I was not feeling the RLS in my leg. Is there any insight that someone can give me on this? I keep thinking because the fatigue has continued after nights when there was no RLS sensation that I must have other problems the Doctors have missed.
This has been a very traumatic experience for me overall as I know it has been for all of you. Before the chronic fatigue began in 2003 I was a captain with a major airline, I owned and flew my own aerobatic airplane, I flew gliders, skied advanced to intermediate, rode mountain bikes, back packed and fly fished, ran 6 miles three days a week at an eight minute pace and lifted weights twice a week. Physical activity and recreation defined my being. Losing the capacity to exercise these activities feels like losing my life. In fact the reason I am on this web site is because I am at Tahoe trying to ski. I am extremely depressed with my inability to ski anything but beginning and intermediate runs for two half days out of seven days. The two half days I skied back to back at a fairly aggressive level has taken me four nights to recover. This roller coaster of hope and despair at times seems more than I can take. Fortunately I have a loving, understanding wife that can listen and empathize. I am on this web site because I feel like I need more. Because of my overall healthy lifestyle, I never dreamed that in my early fifties I would become what feels like to me as being a physical , mental and emotional invalid. I do hope I can find a combination of medications which will give me normal energy levels. I think now that is my best hope. Unfortunately the medications will preclude an FAA physical and flying professionally as well as recreationally.
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ViewsAskew
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WBfann, I can empathize with the self-image thing. Elfreida just posted about that in another thread, too. My best friend has lupus and is cannot do anything she used to, my DH has celiac and sleep apnea, and we have all talked about this. My DH had a revalation that since his sleep is so disrupted without the CPAP, he would never be able to do the hiking/camping we used to do. He was a recreational pilot, and with the drugs he takes will never fly again. I recently almost lost a contract (am self-employed) because the client thought I looked fatigued and was not engaged. These issues have a tremedous impact on how we gauge our worth and how we see our value. Several of us here have talked about how there is a mourning process we have to go through. That in itself can be fatiguing and depressing and create incredible sadness.
If you are not having any RLS, IMHO, that is not the cause of your fatigue, since RLS is only a waking thing or something that awakens you. Since PLMs often accompany RLS and you haven't had a sleep study since your RLS got worse, that is a possibility. Not a doctor, but unless you have PLMs, not sure how increasing the neurontin would help.
If you are not having any RLS, IMHO, that is not the cause of your fatigue, since RLS is only a waking thing or something that awakens you. Since PLMs often accompany RLS and you haven't had a sleep study since your RLS got worse, that is a possibility. Not a doctor, but unless you have PLMs, not sure how increasing the neurontin would help.
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cornelia
WBfann, I can sympathise with all your feelings. RLS can have a devastating effect on life, I can tell you. But I still think there are options for you.
You have RLS when you have the creepie-crawleys and an irrisistable urge to move. You do have them, don't you? Otherwise it is NO RLS. And as Ann already said, 80% of patients have PLMD too.
Neurontin is good for PLMD, as is Klonopin, the latter can be quite addictive, but not for all of us.
RLS without PLMS (Periodic Limb Movement while asleep) exists too. I myself have had 2 sleep studies witch were excellent. But I was extremely tired and had to quit my job, as I already said. But I have severe PLMW (Periodic Limb Movement while awake) and for that the Neurontin is helping. I am in very good health otherwise.
What I want to say is that RLS (without PLMS) itself can cause extreme fatigue. So if your sleep studies did not show PLMS you still can be extremely tired from RLS only and RLS cannot be seen in a sleep study. There is no clinical test for this.
Hope this is clear, as Rnglish is not my native language.
Corrie
You have RLS when you have the creepie-crawleys and an irrisistable urge to move. You do have them, don't you? Otherwise it is NO RLS. And as Ann already said, 80% of patients have PLMD too.
Neurontin is good for PLMD, as is Klonopin, the latter can be quite addictive, but not for all of us.
RLS without PLMS (Periodic Limb Movement while asleep) exists too. I myself have had 2 sleep studies witch were excellent. But I was extremely tired and had to quit my job, as I already said. But I have severe PLMW (Periodic Limb Movement while awake) and for that the Neurontin is helping. I am in very good health otherwise.
What I want to say is that RLS (without PLMS) itself can cause extreme fatigue. So if your sleep studies did not show PLMS you still can be extremely tired from RLS only and RLS cannot be seen in a sleep study. There is no clinical test for this.
Hope this is clear, as Rnglish is not my native language.
Corrie
Apparently I am having problems articulating my question regarding the RLS and it's impact on fatigue. I do have RLS and I do have the creepy, crawly feeling in my right calf. Only now it seems to have been drastically reduced by the Neurontin. Prior to taking the Neurontin, my RLS symptoms were periodic. The symptom or sensation in my right calf was, however becoming severe and I was starting to get them during the day watching TV as well as at night when laying down to sleep. I understand that it is the sensation in the leg that precluded sleep onset and sleep maintenance and that it was this aspect of RLS that was the most obvious cause of my fatigue. I am guessing that up until the time I started taking the Neurontin the RLS symptom in my right calf would occur 4 days out of 10. I can understand why I was fatigued the day after a night of not sleeping well because of the sensation in my leg; especially after four nights in a row. What I couldn't understand is why I was still fatigued on the 6 days out of 10 when I was not experiencing the RLS sensation in my leg. I would feel better, but still a lesser level of fatigue. I had deduced that the fatigue on those six days when I was not experiencing the RLS sensation in my leg was due to one of three possibilities. One, the UARS treatment was still inadequate. Two, there was some arcane neurological characteristic about RLS that precluded recuperative sleep even when the RLS sensation was not being felt in my leg. Three, there is another medical problem or syndrome which complicates the sleep disorders I have already been diagnosed with.
When I went to the sleep physician in Chicago last December, I asked her this very question. Basically I asked her if RLS could disrupt sleep even on the nights I was not experiencing the sensation in my leg. Her answer was somewhat bizarre. She said if she was a sleep physician in Europe the answer would be yes. In Europe they recognize the fact that there is an aspect of RLS that neurologically precludes recuperative sleep even when the sensations are not being felt. She said in the US that fact is not always recognized. She also stated that some people who get treatment for sleep disordered breathing problems do not always get a 100% recovery. She explained that with different brains people get various levels of recovery. Ultimately , I guess that could be the source of the residual fatigue I am experiencing.
It would be nice to support the hypothesis that RLS can disrupt sleep even without the sensation in the leg through anecdotal evidence on this web site. Unfortunately, I have not read where anybody on this site or the sleepnet.com site experience the fatigue absent the RLS sensation. Ultimately the sleep study in May will shed more light on this problem. I am also going for a neuropsych evaluation in March.
I greatly appreciate the opportunity to share and brain storm with you and hearing your comments and experience.
wbfann (Will)
When I went to the sleep physician in Chicago last December, I asked her this very question. Basically I asked her if RLS could disrupt sleep even on the nights I was not experiencing the sensation in my leg. Her answer was somewhat bizarre. She said if she was a sleep physician in Europe the answer would be yes. In Europe they recognize the fact that there is an aspect of RLS that neurologically precludes recuperative sleep even when the sensations are not being felt. She said in the US that fact is not always recognized. She also stated that some people who get treatment for sleep disordered breathing problems do not always get a 100% recovery. She explained that with different brains people get various levels of recovery. Ultimately , I guess that could be the source of the residual fatigue I am experiencing.
It would be nice to support the hypothesis that RLS can disrupt sleep even without the sensation in the leg through anecdotal evidence on this web site. Unfortunately, I have not read where anybody on this site or the sleepnet.com site experience the fatigue absent the RLS sensation. Ultimately the sleep study in May will shed more light on this problem. I am also going for a neuropsych evaluation in March.
I greatly appreciate the opportunity to share and brain storm with you and hearing your comments and experience.
wbfann (Will)
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ViewsAskew
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wbfann wrote: What I couldn't understand is why I was still fatigued on the 6 days out of 10 when I was not experiencing the RLS sensation in my leg. I would feel better, but still a lesser level of fatigue. I had deduced that the fatigue on those six days when I was not experiencing the RLS sensation in my leg was due to one of three possibilities. One, the UARS treatment was still inadequate. Two, there was some arcane neurological characteristic about RLS that precluded recuperative sleep even when the RLS sensation was not being felt in my leg. Three, there is another medical problem or syndrome which complicates the sleep disorders I have already been diagnosed with.
When I went to the sleep physician in Chicago last December, I asked her this very question. In Europe they recognize the fact that there is an aspect of RLS that neurologically precludes recuperative sleep even when the sensations are not being felt. She said in the US that fact is not always recognized. She also stated that some people who get treatment for sleep disordered breathing problems do not always get a 100% recovery. She explained that with different brains people get various levels of recovery. Ultimately , I guess that could be the source of the residual fatigue I am experiencing.
It would be nice to support the hypothesis that RLS can disrupt sleep even without the sensation in the leg through anecdotal evidence on this web site.
wbfann (Will)
Since I am in Chicago, I'm curious who you saw, Will. Interesting hypothesis on her part. Guess this is something that Jumpy could add into his survey. I can only answer for me and my direct family that has RLS. When I had intermittant RLS, as my sister, mother and brother do now, I did not have any fatigue when I did not have RLS. I was like that for over 20 years - no meds, only RLS sometimes. My family is still like that - no fatigue if no RLS. It was the PLMs that destroyed my energy and sleep. I took meds for the PLMD and the meds gave me daily RLS. Even so, as long as the meds controlled the PLMs and the RLS, no fatigue. The fatigue came back when the meds did not control the PLMs.
I thought of three things. First, there can be a fourth hypothesis: the meds you are taking are part of the fatigue. I cannot take neurontin without feeling VERY tired and spacy. Since these drugs are not developed for RLS, they don't affect each of us the same, nor do they work on our RLS the same, person to person. It's sort of like playing slots: sometimes you get all cherries with a drug while the next person gets a lemon with their fruit
. Second, maybe people who ONLY have RLS have a different experience than those of us with PLMD or PLMW. Since I have PLMD, my experience is different from those that don't. Third, maybe people with intermittant RLS are the people who should be responding. Those of us with RLS daily have a different experience than you do.
Not sure this helps any, but am interested in hearing what other people say and how it works out for you.
Ann
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ViewsAskew
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I just went through my notes from the RLS conference. I didn't find anything about continued fatigue IF RLS is under control with meds. Doesn't mean it isn't so, but no one talked about it in any of the sessions I went to. Some things I did find that may be pertinent:
-RLS does cause some cognitive function loss over time. This dismayed me tremendously.
-RLS is primary or secondary. People who get it before the age of 45 are usually primary. Those who get is after get it because of another issue or due to aging. By the time we are all old, most of us have it to some degree.
-RLS that is secondary can be caused by fibro, kidney disease, spinal injury, spinal surgery, pregnancy and other things.
Will, do you think this is a secondary case? Did you have it when you were younger, or is its onset completely related to the UARS at an age after 45? If so, seems from what I was reading in my notes from the conference, it's more likely to be related to treating the UARS or finding another cause.
Ann
-RLS does cause some cognitive function loss over time. This dismayed me tremendously.
-RLS is primary or secondary. People who get it before the age of 45 are usually primary. Those who get is after get it because of another issue or due to aging. By the time we are all old, most of us have it to some degree.
-RLS that is secondary can be caused by fibro, kidney disease, spinal injury, spinal surgery, pregnancy and other things.
Will, do you think this is a secondary case? Did you have it when you were younger, or is its onset completely related to the UARS at an age after 45? If so, seems from what I was reading in my notes from the conference, it's more likely to be related to treating the UARS or finding another cause.
Ann
Since I am in Chicago, I'm curious who you saw, Will.
I thought of three things. First, there can be a fourth hypothesis: the meds you are taking are part of the fatigue. I cannot take neurontin without feeling VERY tired and spacy. Since these drugs are not developed for RLS, they don't affect each of us the same, nor do they work on our RLS the same, person to person. It's sort of like playing slots: sometimes you get all cherries with a drug while the next person gets a lemon with their fruit . Second, maybe people who ONLY have RLS have a different experience than those of us with PLMD or PLMW. Since I have PLMD, my experience is different from those that don't. Third, maybe people with intermittant RLS are the people who should be responding. Those of us with RLS daily have a different experience than you do.
Ann[/quote]
Ann,
Thank you for taking the time to educate me and help me brainstorm.
Is there an acceptable and appropriate way to give you the name of the Doctor I saw in Chicago? Also, I would be interested in knowing who you go to as I live in Poplar Grove, IL., which makes going to Chicago a feasible proposition.
The Neurontin does make me feel mildly spacey. That is a small price to pay given the fact that it has significantly improved my energy levels. Also, the mental fatigue or fog has been dramatically reduced. I am not sure why it has helped because it does not make me feel sleepy when I take it. I just know I sleep more soundly. Also, the Klonopin use to force me to sleep in spite of the RLS sensation in my leg; whereas the Neurontin has significantly reduced the sensations to a level where they are insufficient to notably delay sleep onset. Now whether or not there are RLS sensations in my leg while sleeping that preclude or disrupt stage 3 or 4 sleep is another matter; I do not know how that can be measured or diagnosed. I have read that RLS can disrupt sleep maintenance. Do you think RLS sensations in the leg could cause the same problems that UARS causes for me? One of the characteristics of UARS patients is being highly sensitive to even minor pressure differentials in the thoracic cavity due to mild obstructions in the upper airway. This is detected by the brain and precipitates what is called a mini arousal. A mini arousal, as you probably already know, is a momentary wake-up in the brain and is measured and indicated in a sleep study by the EEG. In my first sleep study I was waking up 32 times an hour and I was not even aware of it. Last night when I laid down to sleep I had what I consider mild RLS sensations in my leg. It delayed sleep onset at most by 5-10 minutes. Do you think that after I fell asleep the RLS sensation in my leg could have been sufficient to preclude deep sleep or maybe even caused mini arousals similar to what the UARS precipitated? I do feel more mental fatigue and physical tiredness today than I did the past two days when there was no RLS sensations in my leg prior to sleep onset. Again, I know PLM will cause arousals and the sleep study in May will help with that.
I am hopeful that others on this web site with intermittent RLS will respond to our posts.
Will
I thought of three things. First, there can be a fourth hypothesis: the meds you are taking are part of the fatigue. I cannot take neurontin without feeling VERY tired and spacy. Since these drugs are not developed for RLS, they don't affect each of us the same, nor do they work on our RLS the same, person to person. It's sort of like playing slots: sometimes you get all cherries with a drug while the next person gets a lemon with their fruit
. Second, maybe people who ONLY have RLS have a different experience than those of us with PLMD or PLMW. Since I have PLMD, my experience is different from those that don't. Third, maybe people with intermittant RLS are the people who should be responding. Those of us with RLS daily have a different experience than you do.
Ann[/quote]
Ann,
Thank you for taking the time to educate me and help me brainstorm.
Is there an acceptable and appropriate way to give you the name of the Doctor I saw in Chicago? Also, I would be interested in knowing who you go to as I live in Poplar Grove, IL., which makes going to Chicago a feasible proposition.
The Neurontin does make me feel mildly spacey. That is a small price to pay given the fact that it has significantly improved my energy levels. Also, the mental fatigue or fog has been dramatically reduced. I am not sure why it has helped because it does not make me feel sleepy when I take it. I just know I sleep more soundly. Also, the Klonopin use to force me to sleep in spite of the RLS sensation in my leg; whereas the Neurontin has significantly reduced the sensations to a level where they are insufficient to notably delay sleep onset. Now whether or not there are RLS sensations in my leg while sleeping that preclude or disrupt stage 3 or 4 sleep is another matter; I do not know how that can be measured or diagnosed. I have read that RLS can disrupt sleep maintenance. Do you think RLS sensations in the leg could cause the same problems that UARS causes for me? One of the characteristics of UARS patients is being highly sensitive to even minor pressure differentials in the thoracic cavity due to mild obstructions in the upper airway. This is detected by the brain and precipitates what is called a mini arousal. A mini arousal, as you probably already know, is a momentary wake-up in the brain and is measured and indicated in a sleep study by the EEG. In my first sleep study I was waking up 32 times an hour and I was not even aware of it. Last night when I laid down to sleep I had what I consider mild RLS sensations in my leg. It delayed sleep onset at most by 5-10 minutes. Do you think that after I fell asleep the RLS sensation in my leg could have been sufficient to preclude deep sleep or maybe even caused mini arousals similar to what the UARS precipitated? I do feel more mental fatigue and physical tiredness today than I did the past two days when there was no RLS sensations in my leg prior to sleep onset. Again, I know PLM will cause arousals and the sleep study in May will help with that.
I am hopeful that others on this web site with intermittent RLS will respond to our posts.
Will