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Insomnia - Adult (Expert Forum)
narcolepsy---nothing has worked
Answered by
UMass Memorial Medical Center
Questions in the Sleep & Insomnia Forum are being answered by Dr. Gregg D. Jacobs.
narcolepsy---nothing has worked
by trish2006, May 16, 2009 11:59AM
I have had narcolepsy (and sleep apnea) for a long time. I had had three bariatric surgeries over the past 14 years, and my drs have wondered if some of my meds are not being absorbed properly or at the right rate, yet no one has done any kind of 'test' to determine that. I have tried everything possible for my narcolepsy---the ritalin patches, elixir ritalin.......etc, provigil, other meds....and of course xyrem. I take dextroamphetamine daily, even though it does litte...if anything......I have tried capsules and tablets...crushed them in applesauce, etc....everything my neurologist (who is the 'main doctor' for sleep problems in my area) has suggested.....I literally can't keep going like this......I am the single mom of a six year old and I cannot get anything done because of my tiredness/fatigue......There has to be some other treatment or advice that I could consider......I can barely wake up to go to work, I am so tired at work that I have to keep the temp very cool to stay somewhat awake, and as soon as I get home, I am ready to go to sleep-----this is so not fair to my daughter.....(and for my sleep apnea, I had used cpap, but with no noticable results)....I just want to be alert enough to get 'stuff done'.......and I am in tears almost every day, especially on the weekends, because I don't have the alertness/energy to do ANYTHING.........Please tell me where I can go for additional help.....Thanks......
Doctor's Answer
by Gregg D Jacobs, Ph.D., May 17, 2009 04:12AM
, May 17, 2009 04:12AM
You need to find a sleep center with expertise in narcolepsy where you can be evaluated and treated.
Dr. Jacobs
Dr. Jacobs
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Dr. Jacobs
PLEASE PLEASE PLEASE go back on cpap therapy. Any form of even mild apnea will make your N symptoms worse especially when you use xyrem.
I currently take adderall (adderrall). My xyrem is on hold again until my thyroid levels come back to normal. What I've come to realize is that due to the amphetamines my body metabolizes my medications extremely fast. I do well on a certain combo for 10-12 weeks then have a backlash of severe symptoms. Basically it's cause and effect on hormone sufficiency in my case.
Learning how to cope with scheduling medications, work, and family life is extremely difficult for normal folks throw Narcolepsy & other health conditions and it feels like being hit with a mack truck! I have a counselor who deals with chronic health condition folks, very hard to find but she is fantastic and highly recommend counseling to anyone in our shoes. I don't recieve medication but it is a way to let go of my vent up feelings and have everythig in the open.
If your neuro has other patients with N and you like him/her stick with them - they will help, it's a learning process for them too. My neuro is a goood doc even to the point of another doc thought i had mysthenia gravis so i was tested to rule out all doubt from my other docs, he will not leave any stone unturned to assure me some quality of life. Finding a doc who is highly up to date with N is difficult and just because a sleep ctr treats sleep disorders does NOT mean they are well versed in Narcolepsy.