Posted by back_to_school on August 12, 2013, at 23:31:17
Good evening --
I've been on Emsam 12mg for close to two years now, and to this day I can't believe the difference it has made in my life.
Unfortunately, I started having episodes of extreme daytime sleepiness late last year, despite using a CPAP at night for severe sleep apnea. My doctor prescribed Provigil, went as high as 200mg twice daily, but it did not help. Also tried Nuvigil, but I can't remember the dosage. Doc says Emsam doesn't mix well with stimulants (Ritalin, etc), and honestly I would prefer to avoid anything of that nature.
After the Provigil and Nuvigil failed, doc recommended me for an MSLT in January, which gave a positive diagnosis for narcolepsy. I purposefully avoided doing research on narcolepsy, as I'm the type that will read about a symptom and begin experiencing it the next day. However, in March I began having episodes of sleep paralysis - not knowing about this, I thought I had a stroke/heart attack after the first episode. In June, I began having auditory hallucinations as I was dozing off - again, not knowing about the hypnagogic hallucinations associated with narcolepsy.
I did read about Xyrem, but doc says that is also contraindicated with Emsam.
I'm at the point where I can no longer just "deal" with the narcolepsy: some days and nights are fine. Sometimes I have to pull to the side of the road while driving because out of nowhere, I cannot keep my eyes open. Sometimes I just lay in bed sobbing, because I'm exhausted but I can't fall asleep. The sleep paralysis is possibly the worst piece - even after all these months, each episode is still utterly terrifying.
My biggest problem is that the Fall semester begins in two weeks. I'm a 27 year old college sophomore, because I had to put my education on hold while a series of psychiatrists tried what seems like a thousand different combinations of meds to treat my depression. After a particularly serious suicide attempt, involving two days under general anesthesia and on dialysis, I was referred to my current doctor, who was the first to even mention MAOI's.
I really can't give up Emsam, it has had such an incredible impact on every aspect of my life. I never want to go back to that place of darkness and despair - I'm a real person now, I have a life, and I plan on staying this way.
I'm hoping someone out there has had a similar difficulty, and found a solution that works. ANY insight would be hugely appreciated.
As a secondary question, has anyone been on Emsam for a long period of time, or greater than two years? I asked my doc if the effectiveness is known to ever wear off, but he only has one other patient on Emsam, and for a shorter period than me.
Thanks again for any response.
poster:back_to_school
thread:1048892
URL: http://www.dr-bob.org/babble/20130730/msgs/1048892.html