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Thursday, August 17, 2017
I have a 13 yr history of a sleep disorder that began after a flu like illness in 1997. I have been told that I perhaps had encephalitis that was mild yet enough to damage sleep centers in the brain. I quit searching for a cause or name to what ails me years ago and simply want to feel better.
The hallmark of the sleep disorder is 7 to 8 hours sleep that are completely unrestful. In fact I feel like I have been up for days and have associated orbital pain and fatigue. The initial sleep study showed that I had very little SWS and that it was often interrupted by arousals. No apnea, restless leg or PLMD or narcolepsy was diagnosed. I was placed on Klonopin and for the 1st time in 2 yrs I felt rested but it did not last as the klonopin tolerance grew. I was then put on neurontin 800mg qhs and that helped a great deal but was never perfect. Over the years I have found things that were triggers for unrefreshing sleep (allergies, alcohol, cold rooms, caffeine) and have worked to control them.
I have largely done well over the last 4 yrs until recently when my sleep took a turn for the worse after having only 3 alcoholic beverages. I have not had just a bad nights sleep but over 50% of my nights have been poor quality and basically punishing to me. Over the years I learned that if I just quit my medications for two days (not advised but when desperate you will do anything) and then resumed them I could get things back on track so to speak. Not this time though. Also, I am now awakening about 2 to 3 hours after sleep onset which never occurred before. I usually get back to sleep but do not feel entirely rested.
I went to my sleep doctor due to this. He had me do another sleep study. The results show that I fell asleep in 18 min and progressed into stage 1 sleep and then to stage 2 sleep for the duration ( 6 hours total ). I had zero min in SWS and zero in REM. No apneas, hyponeas, RLS, narcolepsy or other sleep disorder was noted. Some arousals were noted of various duration and they all occurred in stage 2 sleep.
My question is: I have a known however elusive sleep problem. High grade sleep fragmentation with abscence of SWS of unknown etiology, which has gotten much worse suddenly seemingly due to small amount of alcohol but there could be another cause I guess. I am not a drinker and rarely have anything so I did not think this would bother me for weeks. But with my disorder, once my sleep is off track, its like a person who has AFIB and you simply cannot cardiovert them; that`s me except it is my brain/sleep centers. Any thoughts on what to do, where to go, who to see about this? I will drive fly anywhere but am not convinced anyone has a magic bullet so to speak.
I have recently thought that instead of quitting neurontin cold turkey for two days I could lower my dose from 800 mg to 100 mg or to zero over a week or two and then reintroduce it after a week or two. When I suddenly quit neurontin I feel extremely bad, have a great deal of periorbital pain and it is simply to punishing for me to keep doing. I am still on the klonopin (stuck on it is more like it). I have wondered if the alcohol and klonopin caused this as they compete for the same receptors but I don`t know how the brain chemistry would be upset for wks. I take 4mg of klonopin qhs.
Otherwise I don`t know how to get things back on track and my doc is a bit stumped also. I am perhaps one of his hardest cases. Aside from hypothyroidism that is controlled I have no other health problems. I do not have anxiety/depression, CAD, COPD, Apnea, diabetes, obesity, arthritis, nor do I live a stressful life.
So, it is a perplexing case. How does one get good sleep back (it can be done, as I have had some good nights even in the midst of this recent issue.) And along with restful sleep how can I stop these annoying awakenings that I never had before? Would any brain scans be of use. I had a negative MRI brain in 2003 and in 1997 but am wondering if something is worse or the technology is better.
I am an otherwise healthy 40 y/o male with an ideal body weight, and the only other med I take is synthroid. All of my labs have been normal including CBC, CMP, TSH, B12 and FT4 as of 2 wks ago.
Thanks much for any advice you can offer. I tried to be thorough for you as I am not an easy case.
It sounds as though you have a very complicated and difficult problem on your hands. While I can attempt to begin to address some of your concerns, without a thorough review of your history, medical records and examination, I will not be able to provide you with the answer you seek (namely, to return to good, consolidated, restful sleep).
You are reporting disruption of your sleep architecture as well as problems with insomnia. Normal sleep includes a predictable pattern of shifting sleep stages that recurs throughout the sleep period. These stages include stage-I, stage-II, stage-III (slow wave sleep (SWS), and rapid eye movement sleep (REM). The normal transition may be disrupted by the presence of sleep disorders such as sleep apnea, insomnia, or periodic limb movement of sleep. In the absence of sleep disorders, the sleep stage distribution can vary depending upon prior sleep deprivation, time allowed for sleep, caffeine, alcohol, medications, medical or psychiatric disorders, and environmental factors. Medical disorders such as heart burn, arthritis, chronic pain, and asthma can cause sleep disruption.
It is very common, even in normal individuals who have no sleep disorders, to have a disrupted night sleep when they present to the sleep lab. This is related to the new and strange sleep environment, and is similar to spending the night in a different place than what one is used to. It is hard to say with any degree of certainty that an abnormal sleep pattern seen on a single night sleep study, even in the absence of any sleep disorder, represents the usual sleep pattern of a certain individual. Several conditions can cause decreases in SWS and REM sleep on a sleep study. It is clear from your studies that you did not have one of the more common sleep disorders that would result in disrupted or abnormal sleep architecture. What the sleep architecture seen on your sleep studies means needs to be placed in the context your history and clinical symptoms. In your case, these factors include medication effects, depression, and fibromyalgia. A consistent effect of benzodiazepines, like Klonopin, is a predominance of stage-II sleep and decreased SWS and REM sleep. Depression is often associated with poor sleep continuity, especially in the early morning hours. Chronic fatigue syndrome and fibromyalgia are also reported to be associated with decreased SWS and increased arousals. Therefore, one or all of these factors could be playing a role in the changes noted in your sleep architecture.
Insomnia is a very common disorder that can range from a transient condition to a life- long problem. Some of the causes of insomnia include social stress, lifestyle, medications, mood disorders such as depression and anxiety, and medical disorders such as heart disease and chronic lung conditions. In many cases, no other disorder or condition can explain insomnia, and it is considered primary, idiopathic or stand-alone insomnia. Insomnia can manifest as sleep-onset insomnia in which the patient struggles with falling asleep; but they often stay asleep after the initial struggle. It also can manifest as sleep-maintenance insomnia, in which the patient awakens repeatedly during the night. It should be noted that it is common to experience several arousals per hour in normal individuals with or without insomnia. Only if these arousals exceed certain duration, would we remember them. Otherwise we have no recollection of the vast majority of arousals that we experience in our sleep. If someone experienced several awakenings, each lasting over 2-3 minutes in close succession, possibly 5-10 minute apart, then this person may think that he or she was awake throughout the whole time. This accounts for a condition called “sleep state misperception” that is common in patients with insomnia.
It is difficult to conclude that one diagnosis explains your presentation. However, idiopathic insomnia with an effect of klonopin on your sleep architecture is possible. Also, other mood disorders or chronic fatigue syndrome should be considered. The combination of fatigue and insomnia are part of the presentation of chronic fatigue syndrome, but also of several other disorders. Chronic fatigue syndrome is still not well understood, certainly in terms of its causes and natural course. The relationship between Epstein-Barr virus and chronic fatigue syndrome is suspected but not well proven. Depression is a mood disorder that often produces these symptoms.
In any case, brain magnetic resonance imaging (MRI) is not likely to reveal anything in the absence of neurological symptoms in this context. MRI is not part of the diagnostic work up of either CFS or EBV infection. As far as the alcohol, it is unlikely that the onetime consumption would have this long lasting effect.
Getting a second opinion from another Sleep Specialist may be reasonable to help determine the cause of your poor sleep and thus the ideal treatment for you. Good Luck!
Rami N Khayat, MD
Clinical Associate Professor of Pulmonary, Allergy, Critical Care & Sleep
College of Medicine
The Ohio State University