11 replies to this topic

[demart03]

I have had issues with always feeling tired for as long as I can rememeber. I have fallen asleep several times while driving or sitting at a stop light. I have no energy and can sleep 14+ hours a day and never feel rested. I have no issues falling asleep. As soon as I lay down with in a few miniutes I'm alseep. When I go tanning (10-20 mins) I fall asleep and most of the time I dream. I just recently had my PSG and MSLT. The PSG showed no signs of apnea or RLS. And after my MSLT my doctor stated it tested positive for N. However, I wonder if that is accurate??

Here were my scoring/analysis observations:
EEG: EEG was unremarkable. Stages N1 and N2 sleep achieved. No epileptiform activity noted. ECG: Normal sinus rhythm. General: Patient's mean sleep latency was 5:17 minutes. No SOREM observed. Patient coughed off and on throughout the study causing arousals. She stated she had not been feeling well the last couple of days.
IMPRESSION: Abnormal MSLT with a mean sleep latency of 5.3 minutes. No sleep onset REM. Toxicology screen was negative. Prior OPSG notable for relatively early REM sleep. This combination of findings can suggest disorder such as CNS hypersomina, narcolepsy, or circadian rhythm disorders.

My MD underlined narcolepsy and states that I tested positive for N. Now I'm confused.....

From everything I have read, in order to be dx with N you will have REM in 2 of the 5 naps. I didn't reach REM in any of my naps. However, I was coming down with a cold and had a cough. And that did disrupt my naps. I asked the tech if that would alter the results and she said that she was noting every time I woke due to coughing. Also, just to inform everyone that I didn't do my MSLT following the PSG. That was about 2 weeks apart. The sleep center wouldn't do them back to back for some reason.


Sorry for rambling. I'd appreciate any imput.

Thank you,

Dana

[veillettecathy]

I have no Rem onsmin et and my sleep latency is less than a 1 minute to 1.5 minutes, my HLA testing was positive . My sleep studies 10 in all all showed the same non-Rem onset and the 1 min to 1.5 min to sleep. I suffered from HH since teens and had to take naps, had other strange things which I know today is N/C. After being misdiagnosed for years ( I never disclosed my symptoms til my 30's due to more frequent rearend auto accidents and embarrassing sleep episodes while having conversations) first with seizure disorder, then questioned psychiatric, I was diagnosed with Narcolepsy in 1996 but finally a sleep specialist NP diagnosed Cataplexy. I have had to leave my profession as a RN and go on SSDI because of neurologist's ignorance of the disorder knowing there is no cure and worse fear of the drugs used to treat it as in my situation I require high doses of Dexedrine 60 mg. ER and prn 40 mg short acting for break thru hypersomnia, I am suppose to be on Zyrem but missed 1 to many appointments and I was dropped as a patient. My neurologist knew of my August car accident and still refused to treat me and it was and never has been reported top DMV. My son was just diagnosed with Narcolepsy he is 32 y.o.
I wish I was well because something has to be done about these neurologist ( lose there license for refusing to treat a serious disorder in which the patient has injured themselves repeatingly from cataplexy falls and fractures and the multiple auto accidents which in my case was mostly rearenders and totalled 2 autos) No patient should be neglected and allowed to suffer and if I gave treatment to my patients when I was a nurse I would of been brought up for patient negligence and been brought before the board of nurses, reprimanded, put on probation, made to take classes, supervised under another nurse and if not remedied lost my license to practice and good chance of being sued by the patient. I can not get my head around how these "professionals" are continued to practice medicine, but nothing is ever done to protect patients with this disorder, and I have gotten to sick from years of neglect from my providers that I am basically useless today at age 55 y.o.

It breaks my heart to hear the stories and it angers me too! But I am unable to help myself

[veillettecathy]

I also wanted to add about the REM confusion with a diagnosis for Narcolepsy as I have read every medical article I could get my hands on cause if my doctors did not want to understand it I did!! There are several reports out in medical journals regarding Rem onset and the many things that can affect it like age, head trauma ( I think my poor head has been thru the mill as I frequently fell sleep on the toilet and then woke up with a thud on my head! Oh yes a pretty picture and embarressing when your sister in law worries cause your have been in bathroom too long and she comes in and sees you asleep with you falling forward but thankfully she has known you since your teens and she was pretty familiar with sorry sites like this. We laugh about it today as she almost had her third child while she was in severe labor and I was suppose to take her to the hospital but she could not wake me. We were both on the couch that day, and for some lucky reason my sister and her husband happened to stop by and took her to the hospital, she delivered her daughter 5 minutes after being wisked in the ER.

[sweetsurrender]

I was also (recently) diagnosed with Narcolepsy without having REM in any of my naps. I think my average latency was 6.4 mins. My doctor told me that we don't really have any "hard facts" to prove it because of no REM, but she was comfortable diagnosing based on my other symptoms, including one very dramatic cataplexy episode. She also expressed her distaste for the sleep lab that I went to and said we could repeat the MSLT in their office, but I would have to wait longer for medication if we did that. She said we could do it if I wanted the hard proof, but she thought it would be better to just start treatment unless I start having other symptoms that would lead us to believe it is something else.

I think the biggest thing with the MSLT is it is used to confirm a diagnosis, not to refute one. So if you had REM in 2 or more naps then it would be clear cut yes, but if you didn't that doesn't mean a clear cut no.

[sleepywriter]

Two naps with REM is the standard diagnostic criteria for naroclepsy. However, for many insurance policies, you HAVE to do the MSLT immediately following the PSG for it to be considered a valid test. I really hope your insurance company does not deny covering your medications because of faulty testing procedures! Given those results, I'm surprised you weren't diagnosed with hypersomnia. Do you have cataplexy? As sweetsurrender mentioned, the presence of cataplexy almost always indicates narcolepsy. There have been some people who have been diagnosed on their symptoms alone when cataplexy is present.

[demart03]

Thank you very much for all of your responses. To answer some questions....I have never had any symptoms of C or ever had an episode. I have had hallucinations and talk very regularly in my sleep. In regards to having the MSLT after the PSG. My insurance wouldn't cover the MSLT until the results were determined in the PSG. Weird I agree and contray to everything I have read. I too hope there are no issues with the INS covering the medications. In the meantime I just started a dose of Nuvigil through a free 1 month supply from the manf. I too feel I qualify more with hyperinsomia verses narcolepsy. Usually with hyperinsomia you never feel rested after naps. As such in my case. However, from what I have read treatment is the same. I am just excited to feel a difference just from a few days of being on nuvigil.

Again, thank you for taking time to write.

Dana

[veillettecathy]

Two naps with REM is the standard diagnostic criteria for naroclepsy. However, for many insurance policies, you HAVE to do the MSLT immediately following the PSG for it to be considered a valid test. I really hope your insurance company does not deny covering your medications because of faulty testing procedures! Given those results, I'm surprised you weren't diagnosed with hypersomnia. Do you have cataplexy? As sweetsurrender mentioned, the presence of cataplexy almost always indicates narcolepsy. There have been some people who have been diagnosed on their symptoms alone when cataplexy is present.

[veillettecathy]

Regarding insurance reimbursement for " accurate diagnosis" of a MSLT/PSG is most often caused by inaccurate medical coding and/or documentation. As I have stated prevously in a post I suffered from all the classic symptoms that I know now as Narcolepsy since my teens which I hid from others except my immediate family for years as 1 short nap every day after school or work was suffient to allow me to function normally the rest of the day. The HH was a issue since my teens but luckily subsided somewhere in my 40's. Cataplexy was the diagnostic nightmare for me as too many specialist disagree on what it is!! Some say you have to lose muscle strength or muscle weakness or fall but without losing consciousness, which was hard for me to say as I was always a clutz but then one day I was sent to a NP who told me that something as muscle loss in the mouth area etc is indicative of Cataplexy. There is alot still unknown about Narcolepsy as well as too many uneducated "Specialist" that claim to be experts in Narcolepsy. There needs to be compassion and caring for a patients quality of life 1st and foremost in the medical community and with anyone suffering from Hypersomnia that negatively impacts one's life,, My MSLT/PSG, all 12 indicated similiar results; no-rem onset but with sleep onset of less than a minute to 1.5 minutes, also HLA positive, some experts refused to treat my hypersomnia even though they were aware of my multiple auto accidents, few falls with fractures and sprains, my inability to support myself or carry insurance but these experts still expected me to retested at their sleep lab and " You can set up a payment plan".. I have seen too many greedy doctors and insurance companies all at the expense of a patients right to care?? Just because someone does not have rem onset or the specialist can not decide if they have Cataplexy does not rule out Narcolepsy!! And if the insurance does not cover which has never happened to me it probably is incorrect documentation by the provider,,

[Nezzy]

From what I have heard from my sleep specialist and read around the internet is IH does not include the HH like you have so regularly in fact the reason I was diagnosed with after only having one nap with REM in my MLST is because of my prominent HH combined with my 5.5min average SL (my polysom was completely normal). I am still not completly convinved my insurance company seems to be, and I have a managed care plan so I was surprised, so I am on Xyrem and ritalin. I can't take nuvigal because it interacts with birth control lol.

[thecatnapper]

I just went for my follow up visit today for my second sleep study. I wasnt' able to sleep during the first PSG and did not qualify for the MSLT. My doctor felt certain of N based on clinical symptoms of HH, SP, and what appears to be mild cataplexy but wanted me to have another study to make it easier to get approved for Xyrem. He told me to take something to help me sleep for the second study which I hesitated to do because I know that many psychotropics can suppress REM sleep but I went ahead a took the Seroquel so that I could hopefully get enough sleep to qualify for an MSLT. I slept most of the night and fell asleep in all 5 naps. I remember dreaming only a short time that night compared to my average sleep when I feel like I dream excessively but he said I was only in REM for 45 min all night. He said although I fell asleep in all naps I never went into REM but asked me if I dreamed and I said yes that I remember dreaming. He said that the studies were definitely positive for IH but that I have so many symptoms of N even without REM in the naps that he felt comfortable putting me on Xyrem. He feels like I do that the Seroquel affected the amount of REM sleep. He also said that I had several leg jerks during the night but not enough to disqualify me for the MSLT or rule out IH or N. I also believe the Seroquel caused that too as that is why I hesitate to take it when I can't sleep because it makes my body feel very strange.

[Megssosleepy]

I just went for my follow up visit today for my second sleep study. I wasnt' able to sleep during the first PSG and did not qualify for the MSLT. My doctor felt certain of N based on clinical symptoms of HH, SP, and what appears to be mild cataplexy but wanted me to have another study to make it easier to get approved for Xyrem. He told me to take something to help me sleep for the second study which I hesitated to do because I know that many psychotropics can suppress REM sleep but I went ahead a took the Seroquel so that I could hopefully get enough sleep to qualify for an MSLT. I slept most of the night and fell asleep in all 5 naps. I remember dreaming only a short time that night compared to my average sleep when I feel like I dream excessively but he said I was only in REM for 45 min all night. He said although I fell asleep in all naps I never went into REM but asked me if I dreamed and I said yes that I remember dreaming. He said that the studies were definitely positive for IH but that I have so many symptoms of N even without REM in the naps that he felt comfortable putting me on Xyrem. He feels like I do that the Seroquel affected the amount of REM sleep. He also said that I had several leg jerks during the night but not enough to disqualify me for the MSLT or rule out IH or N. I also believe the Seroquel caused that too as that is why I hesitate to take it when I can't sleep because it makes my body feel very strange.

My doc also said I didnt dream during either of my test, but I remember dreaming! Wonder whats that about? They didnt have a doubt in their minds even without the REM. During the night I woke no less then 20 times and in the naps I fell asleep with in 54 sec. all 5 times lol
I just started taking Xyrem (6 days now) the first night was pretty awful, but I can see some difference already and am so happy I got over being scared and just went for it!!

[The Dreamer]

They said there wasn't any REM during my PSG or MSLT.

Though they didn't tell me to stop any of my meds leading into the PSG/MSLT. So, maybe I was REM suppressed. But, I had dreams during the MSLT. And, I was sure that I was a sleep faster than they said I was. Questioned whether they were only counting the second sleep of the nap as the nap, but doc didn't want to listen to me. Told me straight out that he was going to ignore me, until I stopped talking about the MSLT. Yeah, I'm paying a specialist with all his claims of fancy degrees and extra certifications...so he can just ignore me.

Later, my neurologist reviewed the MSLT, and said there was indication of REM before a couple of the naps....but I woke and then napped. But, he wouldn't make the narcolepsy diagnosis. And, since the spinal tap was also borderline... he used it as reason to give up and call it IH.

Then, a few months back...I'm in the ER.... Cataplexy. Doc says he has to do all this special documentation to put that diagnosis into my file. Which he does twice in my presence, because the first time he discovered that he forgot to start the tape recorder. Mentions he did an online search, and Xyrem might be the treatment.

But, next time I see him....I have Cataplexy, but not Narcolepsy...and he has no interest in getting approval to prescribe Ecstacy.

At least he finally knows what Cataplexy is. When I had asked him about it a few years ago, he rattled off the definition for Catalepsy, and told me no and ignored me when I told him he got it wrong. It was supposed to be my new year's resolution to fire him.....but I just haven't gotten around to it.

Finally, I end up seeing a psychiatrist...he reviews my MSLT and says it supports a Narcolepsy Diagnosis...and he says if it looks like a duck, quacks like a duck, then its probably a duck called narcolepsy. Plus he's the only doctor that actually treats narcolepsy patients in the city....and the only doctor in Xyrem success. Since he handles so many more real sleep patients than anybody else...he's thinking of taking control of the sleep lab and getting it accredited. (behavioral health and the sleep lab share the same section of the old hospital. The current head of the sleep lab started out as a sleep tech with sleep apnea...)

He asked if I had been taking anything that might have suppressed REM.... I've heard from other narcoleptics that Provigil can.... while it is listed as a common side effect for Lunesta that it disrupts REM sleep. Recall reading that it was interesting that Serzone, while it also suppressed REM....had the property of increasing stage 3&4 sleep. I used to be on Serzone. But, it isn't on the market anymore....due to liver toxicity. Don't recall if I looked to see what the other anti-depressants they've tried do....though generally they say most suppress REM. Some even eliminate it.

Anyways....I'm entering week 3 on Xyrem. I guess I did surprisingly well today, considering I just discovered that I forgot to take my meds this morning....

The Dreamer.