7 replies to this topic

[grussman]

Since I was in High school struggling to make it through the day, right up until now, I have had a real problem with extreme sleepiness. When my symptoms set in i get out of sorts, somewhat sureal and feel as though I am dreaming. No matter how much I have slept the previous night. In my meetings at work, my eye's will begin to cross, sometimes when I am driving I must close one eye. I will then pull over to get fresh air. The problem is that this is exhausting, it is every day of my life. I take my sleep test this week and I know that I have severe symptoms of narcolepsy, but am afraid what if I am too nervous to fall asleep? I don't know I have never been told to take a nap and we will monitor you. This is the first sleep doc that I have seen and his bed side manor was awful, he made me feel very uncomfortable and he was borderline rude. I am a pleasant friendly person and easy to get along with. This guy would ask me a question and before I could answer it he would interupt with another question. I have recently had a blood test to discount any phyical ailment and it came back perfect and I have no sleep apnea.

This is really impiortant to me and I am very nervous, I wonder if someone can give me some advice? I would appreciate it!

[exanimo]

I am so sorry to hear that your sleep doctor wasn't very helpful! It makes diagnosis really hard when medical professionals are rude!! But you are taking the most important step: finding help! I hope that your sleep study technologists are better than the doctor! Remember to go over all of the information they gave you about the sleep study. In my experience, they gave me a packet with a bunch of paperwork to fill out and whatnot. I got all of it done beforehand so I didn't have to worry about it the night of my sleep study. If you can, try not to take a nap the day of the study. (But I know that this is hard, and I ended up dozing off some on the day of mine!) Avoid any stimulants (caffeine, etc) the day of as well. And any medications you are taking to help you stay awake (usually you should be off any of these for a few weeks prior).

My sleep clinic allowed me to bring a blanket and pillow from home. Be sure you bring suitable pajamas. They will be hooking you up to various wires, mostly on your head, but they also place them on your chest (to monitor heartrate) and on your legs (monitor any leg movements). I would recommend a pair of pajama shorts, or loose pants, and a loose t-shirt or tanktop. These wires ARE uncomfortable, but they are not impossible to work around. Toothbrush, a snack or two as well. And some water. The clinic I was at did not offer any food accomadations, and this isn't so bad for the night study (PSG) but if you do end up staying for the MSLT the next day, you will want food! My clinic actually ordered food from a local restaurant that they put on my bill. But just in case, bring something easy to make. I also brought a packet of oatmeal for breakfast.

I have read on other posts here that you are allowed to use sleep aids such as ambien. If you have it, take it with you if you think it will help you. As for positioning during the night - I slept on my back and on my left side (to avoid the wires coming off in the middle of the night). And they do recommend that you shower and wash your hair prior to the study because if you have oils (from not having washed your hair or body) they can make it easier for the wires to come off or not stick properly. I used some relaxation techniques to help me relax and fall asleep. Deep breathing, images, etc. Kind of a light form of meditation. It helped. I don't know if they allow you to bring an ipod or mp3, but maybe bring one and ask if you can use it. If you think that might help you relax and sleep better.

Also bring something to do for the next day (if you end up staying the MSLT). If you have a difficult time staying awake reading, though, I would NOT recommend a book. I took a book and I ended up dozing off a few times while trying to read. (and you're not supposed to fall asleep in between the naps!)

I hope some of this helped. Just remember to relax. And I really hope that you sleep technologists are nice and have a good bedside manner! Mine did, as well as the receptionist and it made all of the difference in the world!

Good luck! Be sure to let us know how it goes!

[thecatnapper]

Best of luck tomorrow night. I know EXACTLY how you are feeling. I'm so exhausted and my quality of life is so lacking due to my sleep issues that I NEED a diagnosis. I need it for 2 reasons, 1 - so that I don't have to wonder if I am going insane anymore and 2- so that I can hopefully get some treatment that will allow me to get more restorative sleep so that I can regain my previous levels of activity and get back on some sort of schedule with sleeping and eating so that I can hopefully lose at least a good chunk of the weight I've gained. Like the previous poster said, just try to relax. I would recommend trying to focus on anything other than what they may or may not find during your studies. I laid there and worried so much when I couldn't stay asleep that I psyched myself out and only slept 90 minutes all night and couldn't stay for my MSLT. I'm sorry that the sleep doc was a jerk. One of my doctors is like that as far as asking me questions and not giving me time to answer so I know it's frustrating. I've worked with many doctors professionally and it seems that many times, the smarter they are the harder time they have relating to other people who aren't doctors. I'm not sure about where you live but there are not many Neurologists that specialize in sleep in my area so there aren't many choices. There are only two in my county but one doesn't take my insurance and the other has negative patient reviews online so I opted for choice #3 who's office is over an hour drive away from my home but he's been very good so far so I don't mind the drive too much. Hopefully your doc will be nicer once you are through the testing and have a diagnosis. If not, I'd say try to find another if you can. With something like this you need a doc that understands your needs.

[grussman]

Best of luck tomorrow night. I know EXACTLY how you are feeling. I'm so exhausted and my quality of life is so lacking due to my sleep issues that I NEED a diagnosis. I need it for 2 reasons, 1 - so that I don't have to wonder if I am going insane anymore and 2- so that I can hopefully get some treatment that will allow me to get more restorative sleep so that I can regain my previous levels of activity and get back on some sort of schedule with sleeping and eating so that I can hopefully lose at least a good chunk of the weight I've gained. Like the previous poster said, just try to relax. I would recommend trying to focus on anything other than what they may or may not find during your studies. I laid there and worried so much when I couldn't stay asleep that I psyched myself out and only slept 90 minutes all night and couldn't stay for my MSLT. I'm sorry that the sleep doc was a jerk. One of my doctors is like that as far as asking me questions and not giving me time to answer so I know it's frustrating. I've worked with many doctors professionally and it seems that many times, the smarter they are the harder time they have relating to other people who aren't doctors. I'm not sure about where you live but there are not many Neurologists that specialize in sleep in my area so there aren't many choices. There are only two in my county but one doesn't take my insurance and the other has negative patient reviews online so I opted for choice #3 who's office is over an hour drive away from my home but he's been very good so far so I don't mind the drive too much. Hopefully your doc will be nicer once you are through the testing and have a diagnosis. If not, I'd say try to find another if you can. With something like this you need a doc that understands your needs.

Thanks for the feed back, I really need it. Right now I am at work(for another hour or so) and I feel like I have been up for days. I litterally begin to dream while I am awake. I am not looking forward to the ride home. I have been shot for the last 6 hours. Hopefully they will diognose me, at this point I don't care whehther it is narcolepsy or idiomatic hypersomnia, I just want to be treated. I wish yo0u the best with your situation. I can't wait to let everyone know what happened. Thanks again!

[grussman]

I finally went to the sleep study, slept all the way through on wed. night. Each of the five naps the next day I fell asleep in less than 5 minutes. I wanted to keep sleeping, the last nap they let me sleep for 40

minutes. They showed me that my breathing is irradict at night, but not enough to qualify for sleep apnea. They said they will diognose me with narcolepsy without cataplexy. They sent me home with a breather

for night time sleep because they said that it will make my symptoms for narcolepsy less. I think it is an insurance scam. I don't know I haven't had sleep apnea since high school and my oxygen never went below

90. Also there was never more than a 3 point difference in my oxygen, from 96 to 93 or from 94 to 91. I wonder if other people with narcolepsy have had that issue? The doc said he would treat me with NuVigil,

but they want me to sleep a week with this breather to see how much it might reduce my day time sleepiness? Wierd. I am grateful for this forum. I am not the type of person who likes to share his issues but it

seems helpful and everybody here seems so nice.

[thecatnapper]

Oh good, I'm so glad you were able to sleep and that they got enough info to diagnose you. I've heard several people who don't have Narcolepsy say that they think the CPAP thing is a scam but I don't know that much about it. The tech that did my study said that everyone has times during sleep that they stop breathing for a short time and that it is normal in certain phases of sleep. The doctor told me that someone has to stop breathing more than 6 times before he will consider diagnosing sleep apnea. I guess every doctor or clinic has different diagnostic criteria but it does seem that every friend of mine that has had a sleep study at a free standing sleep center got sent home with a CPAP.

[grussman]

Yeah, that's wierd. Maybe they make more money that way. However if it helps lessen the effect of the narcolepsy I am all for it.

[sleepywriter]

I would get a copy of your sleep study results and get a second opinion to see if you really do need the CPAP. If they aren't diagnosing you with sleep apnea, how will insurance cover it? There are some people on the forums here that have been diagnosed with both.