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Diagnosed Sleep Apnea, Non Diagnosed N W/cataplexy


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#1 alyshari

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Posted 26 February 2009 - 12:15 PM

I was just diagnosed with Apnea, but it is believed I have Narcolepsy as well...(refer to previous post). They are trying to figure out, wether they should do a daytime sleep study, or put me on the CPAP for 6 months first. Just this morning I found out that my Aunt has Diagnosed Narcolepsy, and my Grandfather had it too. If I happen to carry the gene for it, will it be easier to get a diagnosis without going through the 6 months with a CPAP??? Any advise would be fantastic!!! My Husband is leaving in April to go into the Military, and that is going to leave me with my 3 year old son alone. I just want to get this taken care of if at all possible before he goes. Thanks so much!!!!!

#2 chimbakka

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Posted 26 February 2009 - 08:29 PM

QUOTE (alyshari @ Feb 26 2009, 10:15 AM) <{POST_SNAPBACK}>
I was just diagnosed with Apnea, but it is believed I have Narcolepsy as well...(refer to previous post). They are trying to figure out, wether they should do a daytime sleep study, or put me on the CPAP for 6 months first. Just this morning I found out that my Aunt has Diagnosed Narcolepsy, and my Grandfather had it too. If I happen to carry the gene for it, will it be easier to get a diagnosis without going through the 6 months with a CPAP??? Any advise would be fantastic!!! My Husband is leaving in April to go into the Military, and that is going to leave me with my 3 year old son alone. I just want to get this taken care of if at all possible before he goes. Thanks so much!!!!!


i would vote for going for the day mlst before the cpap. then if nothing shows try the cpap. that depends on which is more affordable though smile.gif

#3 loki

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Posted 26 February 2009 - 08:40 PM

You should definitely use the CPAP machine for a while first! You can fall asleep quickly and enter REM quickly if you are chronically sleep deprived, which you would be if you have sleep apnea. So in other words, you can get a false positive on an MSLT if you have untreated sleep apnea. You should also get a data capable CPAP machine so you can make sure it's actually working well for you before having an MSLT to check for narcolepsy.

#4 alyshari

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Posted 26 February 2009 - 08:44 PM

QUOTE (chimbakka @ Feb 26 2009, 08:29 PM) <{POST_SNAPBACK}>
i would vote for going for the day mlst before the cpap. then if nothing shows try the cpap. that depends on which is more affordable though smile.gif



Thank you so much for your response! I haven't heard their reccomendation from the doctors office yet. I had them fax over the overnight sleep study results to me today, and it specifically states that I be referred to a MSLT for Narcolepsy. Is it easier to get a diagnosis if I carry the gene??

#5 loki

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Posted 27 February 2009 - 02:27 PM

I know my reply probably isn't what you wanted to hear so I hope that you are working with a doctor who specializes in sleep and understands what sleep deprivation can do. There is a reason they usually do the MSLT after a PSG (night time sleep study, and I mean *right* after, like the next day) and that is to make sure you got sufficient sleep during the night so as not to get a false positive on the MSLT. Some have even argued that one night of good sleep might not be enough when there is a sleep debt built up from something like sleep apnea. Again, sleep deprivation (from apnea or whatever) can look exactly like narcolepsy on a MSLT. You would be wasting your time and money if you aren't being treated for sleep apnea first. And depending on where you are there may be other ramifications on your life, such as losing your driving license or taking medications you may not need. I wish you the best of luck anyway.

#6 alyshari

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Posted 27 February 2009 - 08:46 PM

QUOTE (loki @ Feb 27 2009, 02:27 PM) <{POST_SNAPBACK}>
I know my reply probably isn't what you wanted to hear so I hope that you are working with a doctor who specializes in sleep and understands what sleep deprivation can do. There is a reason they usually do the MSLT after a PSG (night time sleep study, and I mean *right* after, like the next day) and that is to make sure you got sufficient sleep during the night so as not to get a false positive on the MSLT. Some have even argued that one night of good sleep might not be enough when there is a sleep debt built up from something like sleep apnea. Again, sleep deprivation (from apnea or whatever) can look exactly like narcolepsy on a MSLT. You would be wasting your time and money if you aren't being treated for sleep apnea first. And depending on where you are there may be other ramifications on your life, such as losing your driving license or taking medications you may not need. I wish you the best of luck anyway.


loki- Thank you for your response. Your reply is honest and that is what I am looking for. That does make a lot of sense, regarding treating the apnea first. I didn't end up putting my symptoms in this post so here it is:

1. Excessive tiredness all the time-self explanatory
2. Falling asleep while doing anything-Driving(I have to pull over and take naps if I am in the car for more than 20min), eating, drinking(wake up with liquid in my mouth), in meetings, during work, having a conversation, writing..pretty much anything. Always attributed it to working to much.
3. Callapsing-I first experienced this when I was 6. My knees started buckling under me. I went to numerous doctors, specialists, MRI's, X-rays....they all said there was nothing wrong with me, it was just growing pains. Well, still happens all the time. If I am angry, stressed, rushed or really excited... I fall.My thought was that my knees gave out at the worst times...my Mother always said I was the clumsiest person she ever knew.
4.Sleep Paralysis-Ok...this one is kind of embarrassing...I have always had this. I will be consious, but paralyzed. I would get the awful images that felt so real! I would see evil spirits standing over me, I could hear myself trying to scream, but I couldn't open my mouth to get it out. This happens to me about three times a week. My dreams are always vivid. I remember a lot of my dreams from when I was a little kid, in extreme detail, such as times and specific dates, etc.
5. Constant confusion of what I was saying, about to do, or meetings that I am supposed to attend. I get lost going to work....doesn't make any sense.




These are just a few...I could go on and on...you have heard it all before. I can't read a book to my son without falling asleep. I hope whatever they decide to do, I just get the right treatment. I really appreciate everyone's advice!! Thank you!





#7 shallow_water

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Posted 01 March 2009 - 09:20 AM

Diagnosis is a tricky thing unless you have the right Doctor!!!

I have N and recently dx'd with Upper Airway Resistance Syndrome. I wish they would have found enough hypopneas and low oxygen levels to warrant a trial of cpap the first time. Here it is just over a year of being dx'd with N and on xyrem that the breathing bugger came out full force now requiring cpap. My neuro has a few other patients with N and they have night time breathing disturbances as well.

Hopefully the cpap is all you need. I would have much rather tried cpap first than being on all these meds.


Best wishes ~

#8 alyshari

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Posted 20 June 2009 - 07:23 PM

I haven't posted anything in a while. I wanted to post an update, because all of your responses were so very helpful! I had the MSLT done after using the CPAP for a couple of months, and my final diagnoses for everything is severe sleep apnea, and N with Cataplexy, I just had my doctors appointment today. He put me on 200mg of Provigil to start off. I took it today, and felt absolutely no relief! I slept all day, and was tired as usual. Is this something that I should be feeling right away??? He also told me not to take any naps during the day so I get quality sleep at night, and I should not be using my CPAP for more than 7 hours. Right now I am using it for about 10 hours. Does this seem normal? I can't avoid the nap thing, if the meds aren't working....I was hoping to feel at least a little better from taking the meds.Any suggestions??? Thanks so much!!!!

Alysha

#9 Lais02

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Posted 20 June 2009 - 07:51 PM

QUOTE (alyshari @ Jun 20 2009, 06:23 PM) <{POST_SNAPBACK}>
I haven't posted anything in a while. I wanted to post an update, because all of your responses were so very helpful! I had the MSLT done after using the CPAP for a couple of months, and my final diagnoses for everything is severe sleep apnea, and N with Cataplexy, I just had my doctors appointment today. He put me on 200mg of Provigil to start off. I took it today, and felt absolutely no relief! I slept all day, and was tired as usual. Is this something that I should be feeling right away??? He also told me not to take any naps during the day so I get quality sleep at night, and I should not be using my CPAP for more than 7 hours. Right now I am using it for about 10 hours. Does this seem normal? I can't avoid the nap thing, if the meds aren't working....I was hoping to feel at least a little better from taking the meds.Any suggestions??? Thanks so much!!!!

Alysha


The part where he tells you to not take naps, so you get quality sleep at night sounds weird to me. We don't try to nap during the day, we just need to. I napped less when I was on Provigil, so just give it a couple days and see how it goes. I think if you need a nap, you should go ahead and allow yourself to take it. Good luck smile.gif

#10 ohiolor

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Posted 21 June 2009 - 01:21 PM

My husband also has sleep apnea along with N (no C). I chatted with him about your post because some of the doctor's suggestions sounded a bit strange to me. You should be using your CPAP any time you sleep (including naps). We've never heard of a limit of 7 hours and have no clue why your doctor would have told you that. As far as not taking naps so you get better sleep at night, I believe that all information that I have come across for N treatment includes taking a nap or two each day (in addition to your meds) to help with the excessive daytime sleepiness. Just how familiar with sleep disorders is you doctor? We've found that often my husband knows more about his sleep disorders than his doctors (especially primary care docs). Does your current doctor specialize in sleep problems? If not, I strongly recommend finding one that does, so that you can get the best treatment for your conditions.

Lorrie

#11 jenji

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Posted 21 June 2009 - 01:48 PM

Alysha.

Your doctor is clearly not familiar with the particulars of sleep disorders. It's best to find a doctor who is a member of and certified through the American Academy of Sleep Medicine, otherwise you're going to run into discrepancies and inaccurate advice and prescription.

It's actually quite simple: a narcoleptic cannot get "quality sleep" at night without Xyrem. It is the only drug known to restrore proper restful sleep patterns (we're talking brain wave patterns; to prevent intrusive REM sleep at the wrong time and restore slow wave sleep for longer periods of time) and provide the narcoleptic with "quality sleep," as we are deficient and disordered in our sleep patterns due to neurological misfires. It's not a matter of will.

My doctor was quite adamant and thorough in this explanation about "quality sleep", for I actually mentioned to him that a previous doctor (not a specialist) had suggested that I skip my naps for better nighttime sleep. He reinforced that skipping daytime naps would in fact be detrimental to my treatment. He's a neurologist and a sleep specialist, the latter certified through AAof Sleep Medicine.

For a doctor to tell a narcoleptic to avoid naps during the day is absoutely absurd, misinformed and I would argue dangerous and negligent. A narcoleptic nap is not a choice and to put one off or to fight one off could be dangerous if you intend to drive and/or work with machinery. He is in essence telling you to hold off on naps to better tire yourself out and therein obtain better sleep at night due to exhaustion. It doesn't matter if you never nap again, your nighttime brain waves that control "quality sleep" will still be disordered. Absolute ignorance. I'm frustrated for you.

You need to find a better informed doctor. Here is the link to the American Academy of Sleep Medicine. They have provided information regarding sleep centers and doctors in various cities. It's worth a look.

You're not imagining that this advise doesn''t make sense. It doesn't make sense and is in fact, wrong.

best
jenji

#12 alyshari

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Posted 21 June 2009 - 03:52 PM

Thank you for all of your responses!! He does specialize in sleep disorders, so when he gave me this advise I was surprised. As all of you already do, I have spend hours researching my sleep disorders. My understanding, is that it is beneficial to take short naps throughout the day. He said he was starting me on the provigil first and see how I do with it. This is my second day taking it, and I don't feel any different...very frustrating! I am going to give it a week or so, call him, and find out what he wants to do. If he doesn't give me some better advise, I will seek out another doctor. I have heard so many horror stories from people on here regarding the amount of time it takes for a doctor to take you seriously, and give you treatment, that I am almost worried to switch my Doctor. I have had 3 Sleep studies, and have started all of my treatments within 4 months. He has had a sense of urgenct with everything. I have copies of all of my sleep studies which is a good thing. I also wanted to say, that I have gotten so much fantastic information on here by listening to all of you tell your stories, and that has prepared me when talking to my Doctor. Thank You!!! Any further advise would be so appreciated!!!

Alysha



#13 angellus

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Posted 09 July 2009 - 11:47 AM

Thank you for all of your responses!! He does specialize in sleep disorders, so when he gave me this advise I was surprised. As all of you already do, I have spend hours researching my sleep disorders. My understanding, is that it is beneficial to take short naps throughout the day. He said he was starting me on the provigil first and see how I do with it. This is my second day taking it, and I don't feel any different...very frustrating! I am going to give it a week or so, call him, and find out what he wants to do. If he doesn't give me some better advise, I will seek out another doctor. I have heard so many horror stories from people on here regarding the amount of time it takes for a doctor to take you seriously, and give you treatment, that I am almost worried to switch my Doctor. I have had 3 Sleep studies, and have started all of my treatments within 4 months. He has had a sense of urgenct with everything. I have copies of all of my sleep studies which is a good thing. I also wanted to say, that I have gotten so much fantastic information on here by listening to all of you tell your stories, and that has prepared me when talking to my Doctor. Thank You!!! Any further advise would be so appreciated!!!

Alysha



I was diagnosed with apnea and suspicion of narcolepsy.. but after all my apnea symptoms were treated 100% effectivly I still had a wicked mslt score.. i dreamed in every test and asleep in like 3 minutes on each one. I tried cpap first for 6 month then after no improvemnet they moved me to the oral appliance which has worked 100 percent for me. Although i dont feel any different..casue i have narc... but i continue to wear the mouth piece every night