I saw a sleep specialist on 5/14 for insomnia. He asked me some strange questions and I was floored when he said he suspected narcolepsy! I've been going to doctors with this since high school (I'm 25) but no one has ever suggested that! All I knew about the disorder is that some people with narcolepsy fell asleep in the middle of activity, which was not a problem for me. Since then, I've been reading a lot about it and it fits my symptoms - EDS, frequent awakenings, hypnagogic hallucinations, automatic behavior, dreams after 15 minutes of sleep - though most of the things he asked about were things I never would've thought were relevant to report to a doctor.
5/17 was my PSG with an MSLT the next morning. I slept better than usual that night, but thought I was awake during all the naps, though the tech said I'd slept in all of them. I remember hypnagogic images and sounds but no dreams. After all this time, I finally found a doctor who thinks he knows what's going on, and now I'm afraid I messed up my sleep studies and there won't be anything on the results to point to a diagnosis! My follow-up appointment is this Thursday (5/24) and it's going to be the longest two days of my life.
The doctor said if it doesn't show on the MSLT, he'd probably diagnose idiopathic hypersomnia and the treatment would be the same. I don't care if he calls it leprosy if he thinks he can help me! But will insurance cover the same treatment if it's IH? Also, would IH explain the hypnagogic hallucinations or be valid if I only sleep 5 to 7 hours a night?
He also asked about cataplexy, if I experience weakness with strong emotion. I don't often experience strong emotion to begin with, but at the time, I thought it meant complete loss of consciousness. He gave me a list of questions to ask family members, a "Narcolepsy and You" booklet, and told me to think about it. Now I know that cataplexy is not always as severe as my original understanding of it, but I'm still not entirely sure I understand it. When I get a 'shock' (usually when I realize I've forgotten an appointment, made a big mistake, or left something important at home), I get this 'numbness' that goes from head to toe and my arms and hands feel weak, but I'm fully conscious, I don't feel like I'm going to fall, and it only happens with this particular emotion. I assumed that was part of what shock/surprise felt like. Is this worth mentioning to the doctor?
Any advice or insight will be very much appreciated.
Psg And Mslt Done. Now, I Wait...
Started by
JCosmo
, May 22 2012 06:48 PM
4 replies to this topic
#2
818sis
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Posted 22 May 2012 - 09:11 PM
Wow! Your story is so similar to mine that I actually had to double-check that I wasn't reading one of my own posts!
I don't have many answers for you, because I was diagnosed with IH on May 10th.
And the way you describe realizing you've missed something very important sounds very similar to what I go through. But I might have just brushed it off as a cold sweat before you mentioned it. Now I'm going to pay more attention next time it happens.
Some doctors will give you a narcolepsy diagnosis just so that your insurance will cover the meds. Also, I do have hallucinations both before falling asleep and after waking. But I had rarely paid any attention to them, just figuring that they were just my imagination. The Narcolepsy and IH symptoms are very similar, and overlap even with "normal." Most people will experience some of the symptoms at some point in their lives, so figuring out where the line is between normal and narcolepsy is difficult. At least that's what my Neurologist said. Also, the biggest difference between narcolepsy and IH is that with IH you do not have as many REM cycles during your MSLT naps, also you do not have severe cataplexy - these two things appear to be the main ways to concretely determine narcolepsy.
Anyone out there can correct me if I'm wrong. I'm new to all this.
I don't have many answers for you, because I was diagnosed with IH on May 10th.
And the way you describe realizing you've missed something very important sounds very similar to what I go through. But I might have just brushed it off as a cold sweat before you mentioned it. Now I'm going to pay more attention next time it happens.
Some doctors will give you a narcolepsy diagnosis just so that your insurance will cover the meds. Also, I do have hallucinations both before falling asleep and after waking. But I had rarely paid any attention to them, just figuring that they were just my imagination. The Narcolepsy and IH symptoms are very similar, and overlap even with "normal." Most people will experience some of the symptoms at some point in their lives, so figuring out where the line is between normal and narcolepsy is difficult. At least that's what my Neurologist said. Also, the biggest difference between narcolepsy and IH is that with IH you do not have as many REM cycles during your MSLT naps, also you do not have severe cataplexy - these two things appear to be the main ways to concretely determine narcolepsy.
Anyone out there can correct me if I'm wrong. I'm new to all this.
#3
Nezzy
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Posted 23 May 2012 - 06:44 AM
I could not help but respond to this because it sounds kind of like my story as well. I went in because I was having the hallucinations and was caught off guard by some of the questions she was asking me as well. When she left the room to consult with the head Dr (she was an RN) she came back with the "narcolepsy and you" pamphlet and said that is what we are going to test you for, then explained it wasn't the seen on tv version of fall down sleeping and there are varying degrees of it. Now to my point. The night before my test I had a horrible night sleep and only really got about 2 hours all around so when it came time for my overnight test I slept like a baby...in fact it was the first time in months that I did not have a hallucination! I was so upset because i wanted them to see me when I had those because i wanted proof that i wasn't crazy. I had the MSLT during the day and did not feel like i spet through all of the naps but i was extra tried all day. I even fell asleep in between on of the naps!
Anyways my PSG came back normal in fact I had gotten 6.5 hours of sleep ....thats the most I've gotten in years lol. But they said I slept for everyone of the naps, with in 4 minutes and had REM intrusion in one. That combined with the fact that I slept well so any other person should not have been able to take 5 naps the next day and my prominent hypnogogic hallucinations gave my Dr the go ahead to through the N diagnosis my way. I was in disbelief but like you i can pin point some if not all of the symptoms at sometime in the past few years. My cataplexy is so mild I even forgot to mention it to my Dr. I get the face droopy slured words type thing when I get over emotional.
I hope this helps a little before you get your results in and be sure to let us know how it goes. All is not lost either way I know it took me some time to cope with the diagnosis because I just did not expect it and sometimes I doubt it after reading others stories on here who have it way worse then me but i am glad I am getting things figured out.
BTW real quick; I researched IH and from what i can tell the big difference between N and that, besides the cataplexy but some people with N do not have cata at all, is the absence of hypnogogic hallucinations so perhaps there is an answer there.
Good luck!
Anyways my PSG came back normal in fact I had gotten 6.5 hours of sleep ....thats the most I've gotten in years lol. But they said I slept for everyone of the naps, with in 4 minutes and had REM intrusion in one. That combined with the fact that I slept well so any other person should not have been able to take 5 naps the next day and my prominent hypnogogic hallucinations gave my Dr the go ahead to through the N diagnosis my way. I was in disbelief but like you i can pin point some if not all of the symptoms at sometime in the past few years. My cataplexy is so mild I even forgot to mention it to my Dr. I get the face droopy slured words type thing when I get over emotional.
I hope this helps a little before you get your results in and be sure to let us know how it goes. All is not lost either way I know it took me some time to cope with the diagnosis because I just did not expect it and sometimes I doubt it after reading others stories on here who have it way worse then me but i am glad I am getting things figured out.
BTW real quick; I researched IH and from what i can tell the big difference between N and that, besides the cataplexy but some people with N do not have cata at all, is the absence of hypnogogic hallucinations so perhaps there is an answer there.
Good luck!
#4
JCosmo
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Posted 24 May 2012 - 10:35 PM
Welllll the doctor said that yeah, it's cataplexy. The PSG showed a sleep latency of 3 minutes, though a normal REM onset time (168 minutes). Much of it was stage 1 and there was absolutely no stage 3. 76 arousals during the night and a lot of movement. I'll post the numbers when I get a chance. The average sleep latency from the MSLT was 5.something (5.3?) minutes. No REM, but he diagnosed narcolepsy based on the rest of the symptoms, the rest of the sleep study results, and the cataplexy.
It's been a week and a half since he first mentioned the possibility of narcolepsy, so I've had some time to adjust to the idea, but it's still kind of a shock. He gave me a prescription for Vyvanse, a pack of info about Xyrem, and scheduled a follow-up in a week, at which time he'll prescribe Xyrem if I decide I want to take it. I've read some accounts of great outcomes, but I've read some terrible reports as well.
(Thanks, 818sis and Nezzy, for your response
.)
It's been a week and a half since he first mentioned the possibility of narcolepsy, so I've had some time to adjust to the idea, but it's still kind of a shock. He gave me a prescription for Vyvanse, a pack of info about Xyrem, and scheduled a follow-up in a week, at which time he'll prescribe Xyrem if I decide I want to take it. I've read some accounts of great outcomes, but I've read some terrible reports as well.
(Thanks, 818sis and Nezzy, for your response
.)
#5
Nezzy
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Posted 25 May 2012 - 05:33 PM
Welllll the doctor said that yeah, it's cataplexy. The PSG showed a sleep latency of 3 minutes, though a normal REM onset time (168 minutes). Much of it was stage 1 and there was absolutely no stage 3. 76 arousals during the night and a lot of movement. I'll post the numbers when I get a chance. The average sleep latency from the MSLT was 5.something (5.3?) minutes. No REM, but he diagnosed narcolepsy based on the rest of the symptoms, the rest of the sleep study results, and the cataplexy.
It's been a week and a half since he first mentioned the possibility of narcolepsy, so I've had some time to adjust to the idea, but it's still kind of a shock. He gave me a prescription for Vyvanse, a pack of info about Xyrem, and scheduled a follow-up in a week, at which time he'll prescribe Xyrem if I decide I want to take it. I've read some accounts of great outcomes, but I've read some terrible reports as well.
(Thanks, 818sis and Nezzy, for your response
I went home with the Xyrem packet as well and after reviewing everything decided to at least try the 30 day free trial. It came on tuesday and I have had some weird effects but I guess from everything I've heard you have to give it a good old college try and at least give it a few weeks for the weirdness to stop (if there is any) and the benefits to kick in. So I guess my advice would be to at least try it. My insurance may not even cover the stuff so my struggle may be for naught and I can just go back on my ambien and supplement with stimulants throught the day. I also think that reading all the reviews and accounts on Xyrem made me has some psychosomatic symptoms as well so maybe keep an open mind and just see how it goes for you.
Good luck and take care!
