Received Sleep Study Results

[cvincent]

Hey everyone. I know some of you were interested in my sleep study results, so here's what I found out.

First, the reason why my doctor wanted me to have a sleep study done was because of the following symptoms:

- excessive daytime sleepiness

- very vivid dreams, even right after I layed down to go to sleep

- excessive dreaming

- waking up a lot at night

Also, I will try and put everything I found out in this post, but I'm having a hard time remembering things and am pretty exhausted from my appointment today.

So I met with my sleep doctor's nurse practitioner, who was very nice and very professional. She sat down and talked with me about my POTS/Dysautonomia and seemed to be somewhat educated on it. ( Which we all know can be a major advantage ) She then got out the results from my overnight sleep study and my daytime sleep study. She went over all the results very thoroughly and made sure I understood everything.

According to the results, my overnight sleep study, overall, was normal. Which I was not expecting because I am so tired during the day and whatnot. Here are the results for my overnight sleep study;

- Sleep latency was prolonged at 54 minutes

- REM latency was prolonged at 163.5 minutes

- The patient ( me ) obtained 600 minutes of sleep during the recording time of 735 miutes, giving an impaired sleep efficiency of 82%

- There was no detectable snoring during the study. There were only some respiratory effort related arousals and a rare hypopneic event. There was no oxygen desaturation.

- There were no cardiac rhythm abnormalities. Periodic leg movements were not seen.

-IMPRESSION: The patient had prolonged duration of sleep but with some fragmentation and there was mild impairment in sleep efficiency. There were no features of significant sleep-disordered breathing or of periodic leg movement disorder of sleep.

Next was my daytime sleep study. During the daytime sleep study I had to take a 20 minute nap every two hours. She told me that normally, it takes the normal/average person 10-15 minutes to fall asleep for a nap. The results showed though, that for the 4 naps that I took during the day, I consistently fell asleep around 7 minutes. Here are the results;

-IMPRESSION: The mean sleep latency of 7.5 minutes indicates moderate daytime sleepiness. REM sleep was not recorded, so full criteria for narcolepsy were not met, but that alone would not conclusively rule out narcolepsy. The findings suggest the need for wake-promoting medication.

So, a quick summary. Before I had my sleep study my sleep doctor suspected that I had narcolepsy. Now, because I never entered REM sleep during my 20 minute naps it is not definitive that I have narcolepsy. So after my appointment today, the nurse practitioner ordered blood work to check for narcolepsy. I'm not sure exactly how they do this but it will be sent to Mayo and I won't know the results for a few weeks. She also mentioned narcolepsy without cataplexy and hypersomnia. I did a little research and found that there are a few different types of hypersomnia ( due to different causes ). So overall we are not certain on the narcolepsy but it is still a possibility. At this point the tests, along with my symptoms, show that I do have some type of sleep disorder, whether it's narcolepsy or some type of hypersomnia. She gave me a sample of Provigil to try and see if it helps at all with the daytime sleepiness. I just have to be careful due to the fact that this drug is a stimulant and could cause a raise in blood pressure( I am being treated for high bp and tachycardia ) / heart rate/ arrythmias ( I am already at risk for arrythmias due to the fact that I am currently taking a beta blocker along with a calcium channel blocker ) and I also have MVP and some PVC's . SO I will have to see how things go. I hope this helped those who were wondering about my test results and hopeing to receive some insight to their own sleep difficulties.

( and I guess that summary wasn't very quick, was it? )

Candace

[Ernie]

Hi Candace,

Do you feel that the kind of sleep you had during your study is similar to what you have at home? If not, you could ask for a repeat study.

[bizbiz]

Thanks for sharing your results.

After reading your symptoms on a previous post I was sure your sleep study would show more...?

Apart from waking up at night, your symptoms are exactly the same as mine. I was going to do a sleep study, but now I'm wondering if it is worth it.

Like Ernie, I was also going to ask if the sleep you had while you were undergoing the study was the same type or similar to the sleep quality (or lack of...) that you usually have while at home? Also, apart from he excessive daytime sleepiness, are there any other symptoms you have during the day which are typical of narcoplepsy (sudden attacks of sleep, cataplexy etc?)

[momofsara]

Candace, Sara had a sleep study also. Hers showed narcolepsy, and she was put on Provigil. It will raise b/p somewhat and also cause rapid heartbeat. With her, the raise in b/p is a good thing, however the rapid heartrate is troublesome. It does help her stay awake and that is very helpful for doctor visits, etc. She still has a problem sometimes with staying awake while eating, watching TV, and even having a conversation. If you are given the Provigil, I hope your insurance will pay, because it is very expensive. Medicaid will pay for part of it with a physician authorization.

Hope this helps a little

Susan

[cvincent]

Ernie and bizbiz,

I was thinking that the sleep study would show more due to my different symptoms also. For the most part I slept about the same as I would at home, the only difference that I can think of is that it took me a little longer to fall asleep. Also, I don't have the other symptoms of narcolepsy such as sudden attacks of sleep. She did mention narcolepsy without cataplexy, however I'm thinking that it's probably not likely that I have narcolepsy. It is probably more likely some type of hypersomnia.

Momofsara,

The doctor did mention that if the Provigil works, she is going to have to fight with my insurance company. I do have medicaid/molina but if I have to make a copay I probably won't be able to take it, seeing to how I don't have a job oh well, it's all in God's hands. Anyways, I stopped and seen my doctor after my sleep study appointment and he wasn't to big on me taking a stimulant. We have been working for a long time to get my bp and heartrate under control so maybe it would just be better if I ended up not taking the Provigil. I'll have to see how things turn out.

Thanks for everyone's input

Candace

[mjan]

Well your post is very much appreciated. I am going through testing again.. to figure ME out !! Sorry for ALL you have been going through.

I had a sleep study done last year and it showed sleep apnea..(I also have daytime apnea) but whatever it takes to qualify for the daytime MSLT test I di not qualify. The whole purpose of the sleep study was to confirm one neurologists suspicion that I had narcolepsy WITH capaplexy that brings me to the ER all the time. And the "spacing out" I do is actually MICRO SLEEP..which the brain shuts down a few seconds or more to catch up on deprived sleep. Clever eh? ONLY...this is where I make mistakes..BIG ones sometimes at work. I just did again last week..and I was so embarrassed. Eventually it could cost me my job. And I have no one to support me.

So now the Autonomic neuro wants ONLY the MSLT performed if possible. BUT unilke the TYPICAL cataplexy precursors of EMOTION..laughing etc that set off typical Narcolepsy WITH cataplexy. What leads to these episodes (N with C) I guess..is AUTONOMIC symptoms.. tachy..Bp goes up high..usually and I feel like I will lose consciousness. Then if I dont take my emergency betablocker..I end up unable to move..remain alert..but.. I can HEAR. Thats why they really think I have cataplexy.

What I am afraid of is being diagnosed and losing insurance in future.. or..driving privileges.

OH.. I was on Provigil..when they thought my chronic fatigue was part of MS..the neuro had to get me qualified..I loved it..but if I took ONE pill too late in morning then I was up till 2-3 AM..thats how much a stimulant it was. But since I NEVER had energy.. I thought that was great. Cant remember if it had any side effects..like higher BP or not. I stopped only becuase I was seeing a nutritionist and trying to use less and less man made meds.

PLEASE stay in touch.. After seeing my PCP in a few weeks..I'll see if I really want to go through sleep study or not. What will it help? They will ONLY give me meds anyway... I just dont know

Warmly, Jan

[Dizzysillyak]

There was no detectable snoring during the study. There were only some respiratory effort related arousals and a rare hypopneic event. There was no oxygen desaturation.

This caught my attention ... I wonder why you'd wake up for this ... I'd have to google hypopneic event ... Is it possible to have sleep apnea without snoring ? Or to have just a little sleep apnea ?

I was looking at this thread because I have nocturnal myoclonus which means my body jerks as I go into REM. Did your sleep study look for this ? I didn't see it ... I'm not sure why this happens but I'm assuming it was related to gluten since it's not happening now unless I accidently eat it.

Also, I had the daytime test for narcolesy the next day too but since I jerk myself awake when entering REM of course I tested negative for narcolepsy. how did the doc miss that one ?

I took provigil about 5 times before giving up on it. It worked great at keeping me awake but it kept me awake most of the night too ...

Not to beat a dead horse, but within a week of getting the wheat out of my diet I stopped nodding off like this ...

However, in the last year or so, I've found out that if I eat too much chicken or turkey (tryptophan) I have excessive daytime sleepiness .. I went on a turkey and dressing eating binge once where I ate it for a few days in a row and just could not wake up ... That was how I figured this one out ..

Hot flashes are waking me up nowadays, so I've been experimenting with melatonin but read that chicken / tryptophan converts into melatonin so I decided to try it instead ... I don't know what's worse ... waking up at night or being too sleepy to function during the day ...

HTH ... Marcia

[cvincent]

Well your post is very much appreciated. I am going through testing again.. to figure ME out !! Sorry for ALL you have been going through.

I had a sleep study done last year and it showed sleep apnea..(I also have daytime apnea) but whatever it takes to qualify for the daytime MSLT test I di not qualify. The whole purpose of the sleep study was to confirm one neurologists suspicion that I had narcolepsy WITH capaplexy that brings me to the ER all the time. And the "spacing out" I do is actually MICRO SLEEP..which the brain shuts down a few seconds or more to catch up on deprived sleep. Clever eh? ONLY...this is where I make mistakes..BIG ones sometimes at work. I just did again last week..and I was so embarrassed. Eventually it could cost me my job. And I have no one to support me.

So now the Autonomic neuro wants ONLY the MSLT performed if possible. BUT unilke the TYPICAL cataplexy precursors of EMOTION..laughing etc that set off typical Narcolepsy WITH cataplexy. What leads to these episodes (N with C) I guess..is AUTONOMIC symptoms.. tachy..Bp goes up high..usually and I feel like I will lose consciousness. Then if I dont take my emergency betablocker..I end up unable to move..remain alert..but.. I can HEAR. Thats why they really think I have cataplexy.

What I am afraid of is being diagnosed and losing insurance in future.. or..driving privileges.

OH.. I was on Provigil..when they thought my chronic fatigue was part of MS..the neuro had to get me qualified..I loved it..but if I took ONE pill too late in morning then I was up till 2-3 AM..thats how much a stimulant it was. But since I NEVER had energy.. I thought that was great. Cant remember if it had any side effects..like higher BP or not. I stopped only becuase I was seeing a nutritionist and trying to use less and less man made meds.

PLEASE stay in touch.. After seeing my PCP in a few weeks..I'll see if I really want to go through sleep study or not. What will it help? They will ONLY give me meds anyway... I just dont know

Warmly, Jan

Jan, I'm so sorry you have to go through all of that. It sounds like you have a lot of stuff going on. I'm surpirsed that you didn't qualify for the MSLT the first time. As for getting the sleep study or not, it might be a good idea because they might figure out what is really going on. I do tend to feel the same way that you do though. I don't like being on a ton of meds and I am sometimes hesitant to get tests done. I just feel like, what's the point? they won't be able to cure me and they will probably just stick me on some meds that cause side affects. I think though, that if you are showing symptoms that warrant getting a test done then it probably should be done. At least having the proper diagnosis and having an answer would help. And if you did get the sleep study done and they decided to put you on some meds, you could always see if they helped. If they didnt then you could talk to your doctor about going off of them. Who knows, maybe they will figure something out to help you feel better. I have been learning lately that accepting this illness and this new kind of normal isn't giving up. I always thought that if I accepted it, then I would be giving up, but that's not true. Accepting this means that I am going to live in this new kind of normal to the best of my ability and to keep hoping. Getting tests done it often stressful, exhausting and a lot of times can be depressing, especially when they come back normal and once again we have no answers. But if I never hoped for something better, then I might miss that one opportunity where one test could have made a difference. I know that for me, I can rest in the fact that I don't have to worry about my future or what the tests will show. Because God already knows, and He is in control. Keep your chin up and keep fighting. Going through all of this has undoubtedly made you a stronger person.

Hope some of this helped,

Candace

[cvincent]

There was no detectable snoring during the study. There were only some respiratory effort related arousals and a rare hypopneic event. There was no oxygen desaturation.

This caught my attention ... I wonder why you'd wake up for this ... I'd have to google hypopneic event ... Is it possible to have sleep apnea without snoring ? Or to have just a little sleep apnea ?

I was looking at this thread because I have nocturnal myoclonus which means my body jerks as I go into REM. Did your sleep study look for this ? I didn't see it ... I'm not sure why this happens but I'm assuming it was related to gluten since it's not happening now unless I accidently eat it.

Also, I had the daytime test for narcolesy the next day too but since I jerk myself awake when entering REM of course I tested negative for narcolepsy. how did the doc miss that one ?

I took provigil about 5 times before giving up on it. It worked great at keeping me awake but it kept me awake most of the night too ...

Not to beat a dead horse, but within a week of getting the wheat out of my diet I stopped nodding off like this ...

However, in the last year or so, I've found out that if I eat too much chicken or turkey (tryptophan) I have excessive daytime sleepiness .. I went on a turkey and dressing eating binge once where I ate it for a few days in a row and just could not wake up ... That was how I figured this one out ..

Hot flashes are waking me up nowadays, so I've been experimenting with melatonin but read that chicken / tryptophan converts into melatonin so I decided to try it instead ... I don't know what's worse ... waking up at night or being too sleepy to function during the day ...

HTH ... Marcia

Marcia,

You know, I also wondered about the respiratory related arousals but she ( the nurse practitioner ) didn't really mention anything about it. At least, she didn't say it was abnormal. I guess I probably should have asked some more questions. I was pretty tired when she was explaining everything, that sleep center building is always so quiet and peaceful She did say that it didnt show any evidence of sleep apnea. She also showed me that whenever I changed to a different stage of sleep, I would wake up.

I do know that you can have central sleep apnea and there isn't any snoring with that. However this form is generally more rare. In central sleep apnea the problem isn't with snoring or with your throat. It happens because your brain just stops/forgets to tell your muscles to make you breathe. Central sleep apnea is usually related with neurological diseases.

I'm not sure if they looked for nocturnal myoclonus or not. I know that going into the study they were already looking for narcolepsy.

During my MSLT I also did not go into REM sleep during my naps. But the thing is, the naps were only 20 minutes long. So was that even long enough for me to go into REM sleep? I know when I'm at home, if I take a nap I usually end up sleeping for 2-5 hours. And I happen to sleep really well during naps. I hardly can remember my dreams and I don't usually toss and turn like I do at night.

I am on 100mg of the Provigil right now and then after two more days they want me to increase to 200mg. I'm a little concerned with this because it has already raised my bp a little today. I also hope that it doesnt keep me up all night...wouldnt that kinda defeat the purpose? if it kept you up all night then you would be just as tired the next day and that would just end up causing more problems with your heart and bloodpressure because your heart wouldnt be getting the rest that it needs...lol what a mess

Candace

[morgan617]

I've had 2 sleep studies now. I have virtually no stage 3 or 4 sleep, which is the restorative. Every single thing was abnormal except I don't have apnea.

The first result was reported as normal and the second as no stage 3-4, but no hypersomnia, although i fell asleep at all the 2 hour intervals, but like you did not have REM. I just gave up. morgan

[Pokey]

Hey everyone. I know some of you were interested in my sleep study results, so here's what I found out.

First, the reason why my doctor wanted me to have a sleep study done was because of the following symptoms:

- excessive daytime sleepiness

- very vivid dreams, even right after I layed down to go to sleep

- excessive dreaming

- waking up a lot at night

Also, I will try and put everything I found out in this post, but I'm having a hard time remembering things and am pretty exhausted from my appointment today.

So I met with my sleep doctor's nurse practitioner, who was very nice and very professional. She sat down and talked with me about my POTS/Dysautonomia and seemed to be somewhat educated on it. ( Which we all know can be a major advantage ) She then got out the results from my overnight sleep study and my daytime sleep study. She went over all the results very thoroughly and made sure I understood everything.

According to the results, my overnight sleep study, overall, was normal. Which I was not expecting because I am so tired during the day and whatnot. Here are the results for my overnight sleep study;

- Sleep latency was prolonged at 54 minutes

- REM latency was prolonged at 163.5 minutes

- The patient ( me ) obtained 600 minutes of sleep during the recording time of 735 miutes, giving an impaired sleep efficiency of 82%

- There was no detectable snoring during the study. There were only some respiratory effort related arousals and a rare hypopneic event. There was no oxygen desaturation.

- There were no cardiac rhythm abnormalities. Periodic leg movements were not seen.

-IMPRESSION: The patient had prolonged duration of sleep but with some fragmentation and there was mild impairment in sleep efficiency. There were no features of significant sleep-disordered breathing or of periodic leg movement disorder of sleep.

Next was my daytime sleep study. During the daytime sleep study I had to take a 20 minute nap every two hours. She told me that normally, it takes the normal/average person 10-15 minutes to fall asleep for a nap. The results showed though, that for the 4 naps that I took during the day, I consistently fell asleep around 7 minutes. Here are the results;

-IMPRESSION: The mean sleep latency of 7.5 minutes indicates moderate daytime sleepiness. REM sleep was not recorded, so full criteria for narcolepsy were not met, but that alone would not conclusively rule out narcolepsy. The findings suggest the need for wake-promoting medication.

So, a quick summary. Before I had my sleep study my sleep doctor suspected that I had narcolepsy. Now, because I never entered REM sleep during my 20 minute naps it is not definitive that I have narcolepsy. So after my appointment today, the nurse practitioner ordered blood work to check for narcolepsy. I'm not sure exactly how they do this but it will be sent to Mayo and I won't know the results for a few weeks. She also mentioned narcolepsy without cataplexy and hypersomnia. I did a little research and found that there are a few different types of hypersomnia ( due to different causes ). So overall we are not certain on the narcolepsy but it is still a possibility. At this point the tests, along with my symptoms, show that I do have some type of sleep disorder, whether it's narcolepsy or some type of hypersomnia. She gave me a sample of Provigil to try and see if it helps at all with the daytime sleepiness. I just have to be careful due to the fact that this drug is a stimulant and could cause a raise in blood pressure( I am being treated for high bp and tachycardia ) / heart rate/ arrythmias ( I am already at risk for arrythmias due to the fact that I am currently taking a beta blocker along with a calcium channel blocker ) and I also have MVP and some PVC's . SO I will have to see how things go. I hope this helped those who were wondering about my test results and hopeing to receive some insight to their own sleep difficulties.

( and I guess that summary wasn't very quick, was it? )

Candace

Candace, I am sorry to learn of your frustrations. If you can get your full report, including amount of time spent in the different sleep stages, I can help you interpret it. I am betting that you are getting alpha intrusions that are preventing delta sleep such that you are not getting restorative sleep. That fact that you slept 10 hours during your sleep study, and still did not feel well rested, and then fell asleep for naps in 7.5 minutes, is highly suggestive of something materially wrong with your sleep.

I've taken Provigil, and it may keep you up, but it wont resolve feelings of tiredness if you are not getting restorative sleep. It's possible that it will help consolidate sleep, such that it is less fragmented, but I dont think it's likely to make a material difference.

If you can get your full report and post it, or send it to me in a private message, I'd be glad to help out.

Best,

P

[cvincent]

I've had 2 sleep studies now. I have virtually no stage 3 or 4 sleep, which is the restorative. Every single thing was abnormal except I don't have apnea.

The first result was reported as normal and the second as no stage 3-4, but no hypersomnia, although i fell asleep at all the 2 hour intervals, but like you did not have REM. I just gave up. morgan

Morgan,

So did the doctor ever mention what could be wrong? If everything was abnormal, why didn't they do anything? I'm really sorry, that must be so frustrating.

Candace

[Pokey]

I've had 2 sleep studies now. I have virtually no stage 3 or 4 sleep, which is the restorative. Every single thing was abnormal except I don't have apnea.

The first result was reported as normal and the second as no stage 3-4, but no hypersomnia, although i fell asleep at all the 2 hour intervals, but like you did not have REM. I just gave up. morgan

This is all too common in POTS, CFS and FMS patients. Often times, there are alpha intrusions which prevent stage 3 and stage 4 sleep. Every time stage 3 starts, your autonomic system activates, and your back to level 1 or level 2.

Morgan, did you have much REM sleep? Usually, with this kind of pattern, you don't get much REM either. And this can contribute to cognitive issues, as REM is believed to be important for memory consolidation.

My sympathies that you all are going through this. FWIW, you are not alone.

[cvincent]

Pokey

,

They only gave me two papers with the results on them. Most of it is in graphs and such, and the rest that is in writing is what I posted on here. Would my doctor recieve a more detailed report?

Candace

[Pokey]

Pokey

,

They only gave me two papers with the results on them. Most of it is in graphs and such, and the rest that is in writing is what I posted on here. Would my doctor recieve a more detailed report?

Candace

Your doctor must have more data, including a histogram showing the stages of sleep you were in, minute by minute.

Do any of the graphs state the stages of sleep, and the % in each? If so, let 'em rip.

Unfortunately, the practice of many sleep docs is to DX and treat apnea; it's a bit of a boondoggle. Unfortunately, many of these docs are not attentive to the issues attendant to fragmented sleep.