7 replies to this topic

[luckyhunny]

Hello everyone,

A little background info about me, I am a 31 year old female that is overweight-it has been getting worse over the last 5 years for no reason at all. I have been sleeping with a CPAP machine for a year now and still feel just as exhausted after sleeping all night. Sometimes after sleeping 12-15 hours I still feel terrible. The sleep doctor said that I will feel better after 2 months sleeping with machine, now a year later I am still exhausted. Following is the results of my PSG:

Nocturnal polysomnography with CPAP titration using standard protocol.


Sleep Architecture/EEG:
Moderate sleep fragmentation was observed during the study with a sleep efficiency of 66%. Sleep latency was moderately prolonged at 142 minutes and REM latency was not applicable. No REM sleep was demonstrated. No abnormal EEG activity was evident during fragmented sleep.


Respiratory Events:
With the CPAP at 7cm of water pressure, only mild sleep-disordered breathing was demonstrated with an apnea-hypopnea index of 7.9.


Arousals:
No significant respiratory event-related arousals were noted.

Periodic Limb Movements:
No significant PLM's were observed.

Cardiac:
Normal sinus rhythm with rare premature atrial and premature ventricular contractions were noted.

Other:
On the post study questionnaire, the patient noted she slept very poorly and did not fall asleep for several hours.

IMPRESSION:
SLEEP-DISORDERED BREATHING WAS EFFECTIVELY TREATED WITH NASAL CPAP AT 7CM OF WATER PRESSURE ALTHOUGH SLEEP WAS SEVERELY FRAGMENTED AND MILD RESIDUAL RESPIRATORY EVENTS WERE DEMONSTRATED.


Basically, he went on & on (the Dr. that read my test was the sleep dr. that I saw last year) that you shouldn't drive with EDS etc... but I never have fallen asleep while driving. I went to a Neurologist to get help because the sleep dr. said I should feel better in 2 months which didn't happen. Thinking back, this has been going on for about 5 years. I have Hypothyroidism that is controlled with medication.

When I did my initial sleep test I slept very poorly. I went back to use the CPAP and be tested but ended up leaving in the middle of the night because I couldn't sleep with the hot air that the machine was blowing and the guy snoring in the next room, so I was never retested with the CPAP machine. I am being effectively treated with this CPAP now.

My questions are, has anyone heard of not getting into REM sleep. I have done some online research but it is only from people that "suspect" they aren't getting into REM, not one that has been clinically proven not to get into REM. I did have 2 dreams that night, so I am surprised I didn't get into REM at all.

Would this be considered narcolepsy?

I have been working for 2 years at a job that is 2nd shift & it helps out a lot with how awake I am at night. I work 4-midnight. I am wide awake until 2-4 am and sleep till about noon-1pm (unrefreshing sleep all the time) with no energy to do anything whatsoever all day, then around 5pm I am awake and somewhat can function at work. I cannot think straight anymore and it's getting worse. I have a Dr. appt tomorrow. I have no other symptoms besides the EDS & I had an out of body experience a couple of times where I woke up and couldn't move, then I tried to scream & nothing came out then I was able to wake up. It was terrible. But, nothing else since then.

The doctors in NY are terrible. They all try to tell me it's my weight, etc... not wanting to listen and give me the easiest & obvious answer, but I am telling you I am not crazy and that the weight may be a small part of it, but I am feeling terrible and need some advice or direction, if this is even narcolepsy at all. I have been heavy my whole life & it has gotten worse in the last 5 years for some reason, but I have never in my life slept as poorly as I am now. I can sleep all night fully and toss & turn before actually falling asleep but feel like I never slept at all the next day.

Thank you for reading! Please help me! How can someone not experience ANY REM sleep while sleeping the full 8 hours at the sleep center?

[JCosmo]

Have you been diagnosed with narcolepsy before? My understanding is that without cataplexy, the doctor needs MSLT results to diagnose narcolepsy, and a "positive" is average sleep onset within 8 minutes with REM sleep in at least 2 of the naps. REM normally doesn't begin until 1.5 hrs into sleep. The PSG showed fragmented sleep - maybe you're constantly waking up before you ever get to REM.

Someone correct me if I'm wrong. I'm still waiting to hear the doctor's interpretation of my sleep studies, but I've been reading a lot in the meantime and that's what I've gathered about it.

Also, if taking 142 minutes to fall asleep is "moderately" prolonged sleep latency, what do they consider severe??? Can you get a second opinion? I know it sucks to have no sleep AND no answers

[luckyhunny]

Have you been diagnosed with narcolepsy before? My understanding is that without cataplexy, the doctor needs MSLT results to diagnose narcolepsy, and a "positive" is average sleep onset within 8 minutes with REM sleep in at least 2 of the naps. REM normally doesn't begin until 1.5 hrs into sleep. The PSG showed fragmented sleep - maybe you're constantly waking up before you ever get to REM.

Someone correct me if I'm wrong. I'm still waiting to hear the doctor's interpretation of my sleep studies, but I've been reading a lot in the meantime and that's what I've gathered about it.

Also, if taking 142 minutes to fall asleep is "moderately" prolonged sleep latency, what do they consider severe??? Can you get a second opinion? I know it sucks to have no sleep AND no answers

hi,
No, I haven't been diagnosed with anything yet. I can be up all night and sleep immediately if given the opportunity to do so during the day (if I wake up early that day, I can return to bed and be out within minutes). I slept pretty much all night that night without waking up that I recall and I was there for 8 hrs., but it wasn't detailled on my report for some reason.

I know, 142 minutes was a very long time, I finally fell asleep about 5am and slept till noon & felt like a train wreck all day. Depending on what I hear tomorrow, I have some 2nd opinion doctors that were recommended to me that I will make appts with. I cannot continue to go on like this. It has been getting progressively worse and I cannot stand it anymore.

[luckyhunny]

I should also mention that the sleep dr that read the test (before he actually read & analyzed it) when I spoke to him on the phone, he told me he offered me Nuvigil last year (I don't remember this at all) to help with the OSA he said that may be keeping me awake which he now says is clearly under control. IDK why he would even want to give me a stimulant-I would think now that he analyzed my results that he would want to give me something to help me get a better nights sleep & then the EDS will be resolved. I have an appt with sleep dr in a month. My neurology appt is tomorrow. The sleep center tech told me based on what he saw that he would think I had Narcolepsy because someone my age doesn't "not" get into sleep like this until they're much older. He said they may want to do the MSLT from what he's seen with others in the past. I hope to have all of the answers I want tomorrow. Also, the cardio part of the test with the abnormalities kind of concerns me as well.

[JCosmo]

I'm not a doctor obviously and this is not official medical advice but I hope I can reassure you somewhat with the cardiac findings, at least. Normal sinus rhythm means it's regular, normale rate, and the electrical impulse is coming from the right place. PACs and PVCs (premature atrial or ventricular contractions) happen when some part of the heart tries to start the beat instead of going along with it, so the top of the heart (atria) or the bottom of it (ventricles) beat before they should. In this case, they're rare, meaning once in a while it'll happen (usually seen when the blood oxygen starts to drop and the heart wants to get in that extra kick to push out some more oxygenated blood). It's not uncommon with sleep apnea. Only a problem when it's frequent or when every beat is starting from the atria (atrial fibn, atrial flutter, etc) or every beat starting from the ventricles (ventricular fibrillation, ventricular tachycardia, junctional rhythm, etc.)

[Contemplative]

I have had 0 REM sleep which has made me feel terrible on numerous occasions. Most of MY situation stemmed from antidepressants and benzodiazepines, esp klonopin, and remember I'm spreaking about myself only and my own experience. The medications suppressed my REM sleep which is helpful if one has REM Sleep Behavior Disorder and severe nightmares. In order to get an accurate sleep study, I had to have a long supervised drug holiday where I went off all my meds. So sorry for the frustration and the exhaustion. I find it unbearable at times, myself. Keeping you in my thoughts. Best of luck with your appts. Keep us posted.

[LauraL]

As Contemplative noted, anti-depressants can interfere with REM sleep. I slept for 7+ hours during my sleep study and only had 12 minutes of REM. I take 40mg of celexa. Not sure if that applies to you. Could the hypothyroid medication be interfering? Definitely you want a 2nd or 3rd opinion!

As far as Nuvigil for EDS, I went back to see my primary care doctor a few weeks after my sleep study (was still waiting for the follow-up with my sleep doctor). At that point, we still had no idea what was going on, but the EDS was so severe that I was barely functional, and worried about job consequences from all the work missed and from falling asleep during meetings and such. My doctor gave me nuvigil, just so that I could be functional while waiting for things to get sorted out. It was a major help!

I wouldn't put too much stock in what the sleep tech said--he/she is not a doctor. My sleep tech said he thought I had hypopnea, but my apnea/hypopnea index ended up being 0.6, which is well within the normal range. And I totally sympathize about the weight issues, and doctors wanting to put all your problems on that. I am also overweight, and the sleep doctor looked at me and said, "Oh, you have apnea because of your weight, I'm sure of it." And then continued, "Well, you either need to lose 40 pounds or grow four feet--your choice." I was so mad! Completely unsympathetic.

I read recently that a lot of times onset of narcolepsy is accompanied by unexplained weight gain. It made so much sense when I read that. Around the same time the severe EDS started, I gained about 30 pounds, almost overnight. It was around the holidays, so I was eating more treats than usual, but certainly not enough to gain 30 pounds! Nice to know I wasn't going crazy.

Best of luck! Hang in there,
Laura

[Since1967]

I read recently that a lot of times onset of narcolepsy is accompanied by unexplained weight gain. It made so much sense when I read that. Around the same time the severe EDS started, I gained about 30 pounds, almost overnight. It was around the holidays, so I was eating more treats than usual, but certainly not enough to gain 30 pounds! Nice to know I wasn't going crazy.

Best of luck! Hang in there,
Laura

You might want to ask them to check your thyroid hormones including Free T4 and T3. Docs are usually just testing TSH these days so ask them to also test Free T4 and T3. It has been shown http://ajpendo.physi...5/E892.full.pdf that with narcolepsy, TSH can be low or low normal when T4 and T3 are normal. So this means if your T4 or T3 fall below normal, your TSH will rise but probably still be in the 'normal' range and the doc will not pick up the low thyroid condition which can be associated with weight gain. Depending on the doc, you may have to be insistent to get the actual T4 and T3 thyroid hormones measured instead of just the TSH which can be unreliable with narcolepsy.