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#1 Cheri1216

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Posted 10 October 2009 - 07:26 PM

I was basically diagnosed by medical history. At the time of my tests I was taking all of my normal medicines except for Adderral XR 20. I was off that for 4 days. I also was allowed to take Lunesta, the night of the study. The sleep doctor who diagnosed me is not treating me because he believes I am a bit to complex of a case for him to treat. The doctor who is treating me is a neurologist/sleep doctor, who sees N as cut and dry. He has told me that he is not sure I have N, but doesn't really know what else it could be. I keep going to him because my insurance will only pay for Xyrem if it is written by a neurologist or a pulmonary doctor. I am going to put my results on here, and if you are so inclined, tell me what you think. Oh one more thing, during the MLST I feel a sleep in between naps, and the tech even fussed at me about it, but did not note that in her report.



Basic Overnight Polysomnography 14 Channel Montage Utilized.

Sleep efficiency=Studied for 456 minutes, slept for 408.5 minutes for a sleep efficiency of 89.6%

Sleep latency=Normal @ 89.6 minutes.

REM latency=long at 162 minutes

Stage N1 usually accounts for 2-5% of total sleep time, =7.4%

Stage N2 represents 45-55% of total sleep time, = 55.2%

Stage N3 (delta or slow wave sleep) constitutes 5-15% of total sleep time, =0%

REM represents 20-25% of total sleep time, =32.8%

Review of the sleep histogram shows increased REM sleep.

Nocturnal Myoclonus: 40 periodic limb movements for an index of 5.9

Cardiac Arrhythmia= none

Respiratory Events= 2 respiratory events during REM sleep.

Impression: No evidence of sleep apnea

Multiple Sleep Latency Test

Five nap studies @ 7:48 am, 9:48 am, 11:45 am, 1:49 pm, and 3:37 pm. She fell asleep during 3 naps at 13 minutes, 14 minutes and 13 minutes. There were no sleep onset REM episodes.

Impression: No pathological sleepiness



Conclusions: Patient presented with history of Excessive Daytime Sleepiness for duration of at least 6 months, with sleep paralysis, and episodes suggestive of mild cataplexy. Currently patient is on Lunesta for sleep, but maintains it takes her an hour at least to fall asleep and at least 5-6 awakenings each night. Although MLST does not support Narcolepsy, I feel that this patient does indeed have Narcolepsy, opposed to Hypersolmence. I believe she will be a complicated case, and intend to contact Dr. Roth in Detroit, before starting treatment.







#2 Saraiah

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Posted 11 October 2009 - 01:16 AM

Hi Cheri! I am very much looking forward to learning from everyone's interpretations of your sleep study data. If you'd feel comfortable disclosing some or all of the meds and their dosages that you were taking at the time of the sleep study, it would be interesting to know what they were. I ask because I am sure that some meds affect sleep study results, so knowing that info will help us all make sense of your findings.

I've been too overwhelmed,exhausted, and disorganized to request a copy of the results of the PSG and MSLT that resulted in my being diagnosed with N. Now you've got me curious to ask for a copy the next time that I see my sleep doc.

Cheers,
Saraiah

#3 Cheri1216

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Posted 11 October 2009 - 12:43 PM

Sariah thanks for your answer. I was a bit out of it when I first posted so I will add my meds. and maybe clarify my situation a bit now. I had been on 20 mg Adderall XR for about 1 year for EDS, given to me by my GP. I had been suffering with this for at least 10+ years but the last two years before she put me on it, wer getting worse. I have hypothyroidism, and was tested every 6 months to make sure my tiredness was not due to the thyroid. Every blood test came back good so she decided I needed a sleep study. At the sleep clinic my score on the ESS was 19, and I was dosing in the waiting room, to where my husband woke me because he was afraid I was going to fall. The symptoms I related to the doctor were: trouble going to sleep at night when I went to bed, I could lay on couch to watch TV and fall asleep within 10 mins. As soon as hubby woke me up for bed, I would take my Lunesta and be awake for at least 1 hour, and wake up about every 2 hrs for 10-15 mins at a time. I had severe SP to the point I was afraid to go to sleep. The SP was while falling asleep, alot of nightmares, and just as tired when I got up as when I went to sleep. I also related that I seemed to trip over my own feet quite a bit expeciallsy if I was upset, or in a big hurry, and that my knees were weak when I stood up, when nervous or stressed about something. The results I posted are not from the actual readouts of the tests, but from a letter the doctor send to my GP. I was off of the Adderall XR for 4 days before test. Since diagnose I have been on Xyrem and Adderrall XR starting with 40 mg, now down to 30mg, and I am hoping to get off of it all together, as I have developed a rapid resting heart rate. Since being on Xyrem I have had no SP, no nightmares, no tripping over myself, nor no weak knees. I have lost 40 lbs , and lost most of my appetite. I have tried provigil and Nuvigil but had allergic reactions to both. I will be at the convenction and am hopeing I can find some more information there. Unfortunaley the doctors where I live do not see much in the way of Narcolepsy, and are still under the impression it is a "rare disorder" which needs to fit the criteria 100%.

The medicines I was on at time of tests.
Taken in Morning on day of night time test, and morning of MLST
Zolfolt-100mg--Aniexty\Depression
Xanax XR-1 mg- Aniexty \ Panic Attacks
Prevacid--30mg--Gerd
Lisinopril--10mg--High Blood Pressure
Clartin OTC--10 mg --Allergies
Taken at Noon on day of nightime test and Noon of MLST

Levothyroxine---50MCG--Hypothyroidism
Cytomel--12.5MCG--Hypothyroidism

Taken @ bedtime night before nighttime test and night of test.
Junivia--100 MG--Type 2 Diabetes
Aspirin--81mg--aortic spasms
Lunesta 3 mg--sleep aide.
Thanks to anyone who reads this and can give me your insight.
Cheri
































































































#4 sleepless sleeper

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Posted 25 October 2009 - 01:59 AM

I apologize, but I can't read everything right now. You say that they say it is a rare disorder so it must meet the criteria by 100%? I just so happen to have this link quite handy at this very moment. I have no idea if it will help or not because as i said, I am having problems reading.

http://www.ninds.nih..._narcolepsy.htm

Go to the 2nd topic, Who Gets Narcolepsy, and check out the first sentence.

#5 bandido mustang

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Posted 12 November 2009 - 11:40 PM

I was basically diagnosed by medical history. At the time of my tests I was taking all of my normal medicines except for Adderral XR 20. I was off that for 4 days. I also was allowed to take Lunesta, the night of the study. The sleep doctor who diagnosed me is not treating me because he believes I am a bit to complex of a case for him to treat. The doctor who is treating me is a neurologist/sleep doctor, who sees N as cut and dry. He has told me that he is not sure I have N, but doesn't really know what else it could be. I keep going to him because my insurance will only pay for Xyrem if it is written by a neurologist or a pulmonary doctor. I am going to put my results on here, and if you are so inclined, tell me what you think. Oh one more thing, during the MLST I feel a sleep in between naps, and the tech even fussed at me about it, but did not note that in her report.



Basic Overnight Polysomnography 14 Channel Montage Utilized.

Sleep efficiency=Studied for 456 minutes, slept for 408.5 minutes for a sleep efficiency of 89.6%

Sleep latency=Normal @ 89.6 minutes.

REM latency=long at 162 minutes

Stage N1 usually accounts for 2-5% of total sleep time, =7.4%

Stage N2 represents 45-55% of total sleep time, = 55.2%

Stage N3 (delta or slow wave sleep) constitutes 5-15% of total sleep time, =0%

REM represents 20-25% of total sleep time, =32.8%

Review of the sleep histogram shows increased REM sleep.

Nocturnal Myoclonus: 40 periodic limb movements for an index of 5.9

Cardiac Arrhythmia= none

Respiratory Events= 2 respiratory events during REM sleep.

Impression: No evidence of sleep apnea

Multiple Sleep Latency Test

Five nap studies @ 7:48 am, 9:48 am, 11:45 am, 1:49 pm, and 3:37 pm. She fell asleep during 3 naps at 13 minutes, 14 minutes and 13 minutes. There were no sleep onset REM episodes.

Impression: No pathological sleepiness



Conclusions: Patient presented with history of Excessive Daytime Sleepiness for duration of at least 6 months, with sleep paralysis, and episodes suggestive of mild cataplexy. Currently patient is on Lunesta for sleep, but maintains it takes her an hour at least to fall asleep and at least 5-6 awakenings each night. Although MLST does not support Narcolepsy, I feel that this patient does indeed have Narcolepsy, opposed to Hypersolmence. I believe she will be a complicated case, and intend to contact Dr. Roth in Detroit, before starting treatment.






Dear Cheri1216,

Please let us know the final diagnosis.

It is significant that Sleep latency was 89.6 minutes. and REM latency was long at 162 minutes. That's well over an hour for you to enter REM sleep after you went to sleep. Thats perfectly normal (not narcoleptic). Many of us enter REM as soon as our head hits the pillow (well, within a few minutes anyway.) Also, there were no sleep onset REM episodes during the five nap study. Typically a narcoleptic enters REM at 30 seconds to 5 minutes during the nap study, initially black and white dreams and later color dreams (if they let you stay asleep.)

Sounds like you are tired (sleepy) all day because the quality of your nights sleep is poor and maybe not as long as you need. There is a misconception that narcoleptics don't get enough sleep. I get 10 hours of sleep most nights, but its almost all REM sleep, very vivid and active dreams, can't move when I first wake up in the morning, audio and visual hallucinations and sometimes nightmares. I get up every hour or so during the night, mostly for no particular reason and sometimes wakeup standing in the kitchen (in front of the refrigerator, of course.)

My wonderful wife suffered for years before I finally realized I needed to move my dog and pony show into another bedroom. She is, in her words, "eternally grateful."

I recently had a Doctor carefully review all my meds, and we DID find several drugs I no longer need. It may be that some of your meds are contributing to the problem.

It is worth noting (unusual) that you can fall asleep during the day but take an hour to get to sleep during the night. This suggests to me that your day/night orientation may be out of whack. I have heard that one remedy for this is to get up at the same time each morning and saturate a room with bright light and spend 20 minutes or more there each morning.

I hope some of this helps. I'm not a doctor, but I've been around several blocks more than a few times.

Keep us posted.

Bandido Mustang1%ER

Growing old ain't for sissies!