This topic contains 7 replies, has 3 voices, and was last updated by Ferret 1 month ago. This post has been viewed 140 times
- December 17, 2018 at 4:06 am #8528
Hi Everyone…I have had the majority of symptoms of Narcolepsy and mild cataplexy since I was 11 or 12 years old. I dont remember all of the specifics, but from what I was told, I would randomly fall asleep and get hurt, but due to parental neglect, treatment was never thought. I was started on antidepressants at 16 and have now been on them for 30 years. I tried once to taper off, and after a 6 month taper and two weeks off, I went into such bad discontinuation syndrome, I was hospitalized. After a week of admission, I was essentially restarted just to open the bed.
Question 1) do I need to be off my meds for a truly diagnostic MSLT?
Next question….I was diagnosed with a bad essential tremor in my late teens and over the years, it progressed to the point where 3 years ago, I had a Deep Brain Stimulator surgery. The surgery has done great for my tremor, but I recently turned it off to see if the stimulator was effecting my sleep. The tremor has become so significant, that I was unable to turn the stimulator back on. With special thanks to Siri, I was able to call 911 and be taken to the hospital where neurology was able to turn it back on.
Question 2) is it feasible to have an effective MSLT with a neurostimulator?
I have read different literature and it is conflicting. My neurologist specializes in movement disorders and is completely unsure. I finally have a referral to a sleep center, but do not know how long it will take, and I am trying to gather as much information as possible.
I know, it is a lot of information, but if anyone sleep medicine providers are reading this forum, please feel free to contact me. I am a medical provider (PharmD/PhD) and from what I have read, I could be an interesting case report.December 17, 2018 at 7:41 am #8530
I think perhaps you are the only one who can give advice on the above poster’s question.December 17, 2018 at 4:20 pm #8534
Welcome, you are certainly right about one thing what a great case study!
We have had patients unable to stop antidepressants prior to a study, I have not done done a study with a DBS in place for some time, but to the best of my recollection the only alteration was in the presence of alpha waves during the test. If we are looking to evaluate for narcolepsy our focus would be on sleep onset latencies and REM onset latencies. The DBS will not interfere with sleep stages.
It is VERY important that both the Sleep Physician and the technologist performing the study be aware that these factors are present. Prior to the availability of the MSLT narcolepsy was still diagnosed and treated.Please be sure your physician is intimately familiar with narcolepsy.
It would be interesting if you dont mind to hear about the symptoms you experience on a daily basis.
The antidepressants will alter the results of your testing, however if your physician is aware he/she will know what to look for.
If I may ask is the physician treating you familiar with narcolepsy? because there is way to diagnose narcolepsy according to DSM IV criteria as a Psychiatrist.
I wish you all the best and if I can assist in any way I willDecember 18, 2018 at 12:35 am #8536
Thank you for the reply. My sleep medicine physician is at USC Keck hospital in Los Angeles.
Finally, I was able to get my referral straightened out and my appointment is in about 8 weeks. I wish it was sooner, but it is what it is. Until then, fingers crossed as life has not been pleasantDecember 18, 2018 at 1:35 pm #8541
My computer is acting up and this is the third time that I have tried to write this post.
You should know (and your sleep specialist should know) that certain antidepressants significantly suppress REM. Since the purpose of the psg/mslt is to find out the onset of REM sleep, those antidepressants will significantly skew your results. Please google YOUR antidepressant to find out if it is a REM suppressant. You should also be aware that both Nicotine and Cannabis are also REM suppressants.December 19, 2018 at 10:10 pm #8555
I am not a Doctor but I do have an inquisitive mind and thought this might be of interest to you. Please note there is a typo in the second to last paragraph (tumor instead of tremor)December 19, 2018 at 11:09 pm #8558
Unfortunately, the tremor that I have known as active tremor/essential tremor is independent of antidepressants. It is also genetic – from what i have been told, most members of my fathers side of the family have it.
And all I can say is that it is bad – we are talking bad to the point of me being a case report bad.December 20, 2018 at 7:56 am #8559
I’m glad you already checked into that but I’m sorry that it isn’t anywhere near as simple to fix.
You have a “can do” attitude and you will get through this. Best of luck to you and please keep us informed as to your progress.
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