I am 39 & I was diagnosed over a decade ago with narcolepsy and cataplexy after battling it my entire life.
After all the medication changes (and basically all the different personality changes) I finally found a medication combo that worked.
I have been on 60mg of desoxyn and adderall since 2000. My doctor retired and my new doctor is asking to do a repeat PST & MSLT. I completely understand all the stigma attached to these medications and all the “red tape” that puts pressure on physicians writing these scripts. It’s almost like I’m just as scared of him as he is of me. This vanderbilt sleep neurologist with excellent credentials.
It’s tearing me up thinking WHAT IF the rug gets jerked out from under me?
My question is how in the heck will I be able to produce an accurate PST & MSLT that shows the classic diagnosable narcoleptic symptoms when I’ve been on my medication for this long?
Before I was medicated I was in REM sleep on 4 naps an average of 3.5 min.
Since I’ve been medicated I do have to “chill” for about 15 mins a day and sometimes I do nap for a while but I don’t always totally fall asleep furring the day time. I go to bed at night around 10 or 10:30 and wake up at 5 or 6pm…
Is this what this physician is looking for or is he looking to make sure I am getting normal sleep? I know he needs to make sure I’m not abusing them and I absolutely understand that. I wouldn’t trust him if he just handed me scripts and walked out, that would be irresponsible on my part after all the blood sweat and tears that’s been shed for the first 28 years of my life.
I just don’t understand what they’re looking for and I’m actually afraid to look too stressed and anxiety stricken because I don’t want to be labeled as a junkie.
Wow! My sister is in the same situation -- she was diagnosed in 1986. She has a new neurologist because of a separate issue with her carotid artery and that dr. wants her to repeat the PST and MLST. Have you been diagnosed with sleep apnea, too? The whole issue with somatic disorders is that we never get the stage IV sleep that allows the body to heal and rejuvenate itself. It may be worth the inconvenience of testing again to see if you have apneas during the sleep cycle. A CPAP (Continuous Positive Air Pressure) device can help minimize these "seizure-type" episodes and protect your heart from undue stress.
You are not a junkie! You are trying to function with a very serious disorder that changes with time (age). Read my story if you want to see how life can change very quickly. Good luck and God bless you.
Some advice I just thought of that may help you. I was on Venlafaxine (an anti-depressant that delays the onset of REM sleep). I tried to go off the medicine before my PST and MSLT and wound up in a zombie state -- so bad that my husband had to call the paramedics to get me to wake up. During the PST which was the day of my sleep attack, I took the venlafaxine and went to my night time study. The central apneas that were recorded were so bad that the dr. called off the MSLT when he came in the next morning and diagnosed me with hypersomnia. He said he didn't have enough data to diagnose narcolepsy. I went back for another PST and MLST with another dr. I took my regular dose of venlafaxine (Effexor) that day and had a good PST using my CPAP machine during the night study. They were able to continue the study the next morning (MSLT). I had to give them a urine sample to show I wasn't using any medications that would induce sleep. During this study, I had onset REM sleep 4 out of the 5 naps within 2-5 minutes. I was also tested for the genenic marker which was positive. I have always known that I have narcolepsy as it runs in my family and I discuss the symptoms with my siblings on a regular basis. I was able to function, like you, for years until my medications stopped working and I was falling asleep at work on a regular basis. I have an anxiety disorder that worsened my reaction to this change and had no choice but to take a leave of absence. During this time, I knew that my test results would determine whether my disability benefits continued or were denied. It was very stressful. About a month later, I wound up in the psychiatric ward of the ER. The dr.'s believed I was suicidal and they forced me to go to a mental health facility. All I wanted to do was sleep, but once I got to the Psychiatric Hospital, they wouldn't let me. This is a very complicated illness and you have to get medical providers who understand your daily challenges and want to help you. This may be one of the most challenging things you will have to endure in your lifetime. I will pray for you that everything works out to your benefit.
Is it even possible to do accurate tests when you are on all kinds of medications? Over the years I've had 5 "sleep studies". Besides the "N", I have OSA, RLS and a bunch of other boring stuff.
Honestly, I felt the "sleep doctors" that I saw were "quacks". Two of them before I was diagnosed with "n", Just told me after the tests - "your machine is working" hummm? Number one - Dr. I'm not "the machine", why do I pass out all of the time? zzzz?
The best advice I could give is make sure you have a good caring doctor who understands and you like them.
Thank you all for the replies!
I was able to do something totally different than the normal PSG & MSLT that I would completely recomend. My doctor suggested I wear this ActiWatch device for two weeks. It recorded my sleep/wake times, nap times, how much light I was exposed to etc… It was also less stressful than the overnight sleep study. I was able to remain on my normal meds and continue my daily routine. I just had my appointment & returned this watch. It only took a few minutes for the data to be downloaded and printed. It was amazing the information this watch recorded!
The doctor said it was a good clean study and showed him what he needed to know; therefore, no further testing needed besides my normal blood work and urine tests.
Thank GOD!!
When I took my last PSG, years ago, there were no snoring noted and only one partial apnea. Rem latency = 1 min. On both PSG’s I had it showed I was barely within normal limits on stage II sleep. Normal being 45-65% and I was at 65% on one and 64.5% on the other.
My MSLT showed rem latency on 1st nap = 2 minutes, 2nd nap = 1 min, 3rd nap = 1.5, and 4th nap = 30 seconds.
I’ve tried what seems like every possible combo of meds a spectrum of antidepressants and every narcolepsy/ADHD medication till I landed on the desoxyn/adderall combo. The desoxyn has NEVER failed me and has been consistent the 12 years I’ve been on it. The adderall can be hit and miss at times but as strange as it seems I’ve found the adderall to be most effective if I take it right before I call asleep. When I started doing this I was able to hear the alarm for the FIRST time in my life! That sure would have helped when I was in college…
Thank you again for all the replies, I appreciate y’all taking the time to help.
Ranger. That was my question as well. How could one have An accurate reading on meds but the flip side to that question is how could one have an accurate reading OFF of meds, especially when someone has been on them for years.
Yes, the flip side is also true thank for pointing that out. I just check out the ActiWatch - thank you for mentioning it, as I've never heard about it.
A lot of problems come up when changing doctors and we need to find the right one for the best care. It can be a long search.
Thank again for the info re the watch. I looked it up and its pricy $$$ but lower than the cost of one sleep study!!!
Take care and thanks, Ranger
PS: New question: Does any one have a problem of "not knowing if they are awake or not" - "when they wake up?" It sounds odd to ask that, but that is what I feel these days...I don't know how else to put it or explain the experience. I don't know if I'm awake or not...
They loaned me the watch for two weeks. I had to sign something stating if I didn’t return it or etc… I’d be charged $1,000. So I treated it like a Rolex.
I’m so sorry to hear that… That gave me anxiety reading it.
That’s why I’m selective to which hospital I go to and the physicians I see.
That’s horrible
copingwithnarcolepsy said:
Some advice I just thought of that may help you. I was on Venlafaxine (an anti-depressant that delays the onset of REM sleep). I tried to go off the medicine before my PST and MSLT and wound up in a zombie state -- so bad that my husband had to call the paramedics to get me to wake up. During the PST which was the day of my sleep attack, I took the venlafaxine and went to my night time study. The central apneas that were recorded were so bad that the dr. called off the MSLT when he came in the next morning and diagnosed me with hypersomnia. He said he didn't have enough data to diagnose narcolepsy. I went back for another PST and MLST with another dr. I took my regular dose of venlafaxine (Effexor) that day and had a good PST using my CPAP machine during the night study. They were able to continue the study the next morning (MSLT). I had to give them a urine sample to show I wasn't using any medications that would induce sleep. During this study, I had onset REM sleep 4 out of the 5 naps within 2-5 minutes. I was also tested for the genenic marker which was positive. I have always known that I have narcolepsy as it runs in my family and I discuss the symptoms with my siblings on a regular basis. I was able to function, like you, for years until my medications stopped working and I was falling asleep at work on a regular basis. I have an anxiety disorder that worsened my reaction to this change and had no choice but to take a leave of absence. During this time, I knew that my test results would determine whether my disability benefits continued or were denied. It was very stressful. About a month later, I wound up in the psychiatric ward of the ER. The dr.'s believed I was suicidal and they forced me to go to a mental health facility. All I wanted to do was sleep, but once I got to the Psychiatric Hospital, they wouldn't let me. This is a very complicated illness and you have to get medical providers who understand your daily challenges and want to help you. This may be one of the most challenging things you will have to endure in your lifetime. I will pray for you that everything works out to your benefit.
Desoxyn is methamphetamine. If my insurance company won't approve focalin for use, I doubt they would approve methamphetamine with adderall. I don't know what I;m going to do to try live normally -- meaning being able to stay awake for more than a few hours a day. I'm disgusted with this whole mess. I don't even care what they give me next.
Bless your heart!! Will your insurance company pay for any narcoleptic medications? What is their reason for not paying?
copingwithnarcolepsy said:
Desoxyn is methamphetamine. If my insurance company won't approve focalin for use, I doubt they would approve methamphetamine with adderall. I don't know what I;m going to do to try live normally -- meaning being able to stay awake for more than a few hours a day. I'm disgusted with this whole mess. I don't even care what they give me next.
