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Is My Doc Being Unreasonable?

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#41 drago



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Posted 29 September 2013 - 12:58 AM

Okay, so the first thing I want to say here is that I deal with a lot of doctors. Mostly it's for what I call "fun neurological extras" that come with narcolepsy, i.e. transient symptoms. I find that my biggest problem is that doctors often fall on 'defaults', which may be fine in most cases, I don't know, but it never really works for me. 



I want to go back to work and discussed this with her at my last appt, explaining that I want to adjust my sleep habits before starting a job. Currently, I go to bed around 11:30pm but the 1st dose of xyrem does not knock me out as it does for some people and I end up falling asleep around 1am or so. I have started taking melatonin as well so that I can go to sleep. I sleep until about 8am when it's time to wake up the kids for school and have my nap in the early afternoon. I just want to be able to wake a little earlier and maybe push my nap off until after work. I had no idea this discussion would spark a huge issue with my doc!


Firstly, it shouldn't spark a "huge issue" with your doc. I mean, you wanted to change your sleep habits and talked to your doctor about it. Health care professionals must know that overreacting to conversations serve for nothing other than patients not trusting them.



The last appt was nerve racking because she told me that if I wan to go back to work, I will need to be in bed at 9pm (10pm at absolute latest), am not to take any melatonin/sleep aids, have a 20minute nap around 10-11am, then a 1-1.5 hour nap at 2:30pm...YES, THAT'S DURING WORK. She was FURIOUS about the melatonin in the first place.


First of all, the idea of melatonin making anyone angry is just plain silly. I have to take it about three hours before I go to bed for it to work for me, but my neurologist suggested it for me to try. She warned me it might not work until I've taken it consistently for several weeks... which is kind of true. I don't understand why melatonin would make a neurologist upset/unhappy -- would she get upset about camomile tea?


Second, one of the biggest problems with what your doctor told you is that she can predict the future. This is not just absurd from a general medical standpoint, but also pretty lame when dealing with something like narcolepsy. It seemed perfectly reasonable to assume taking 2+ hours of Karate four times a week would be impossible for me in my condition -- except, just the opposite was true. Adding rigorous exercise actually treated a lot of my symptoms, boosted my health, and helped me sleep through the night. Had I stuck with "what will probably happen," I wouldn't have one of the best forms of treatment I've ever had. So while going back to work might put more stress on you/make you more tired, the added activity and stimulus can also help you.


Third, sorry, but the whole "in bed by nine PM" thing... sounds like she doesn't understand that insomnia is part of narcolepsy.



She told me if I can't make this prescribed schedule work, she will no longer prescribe me any meds as I would be "dangerous." Of course, without my meds, I lose my drivers license.


Okay, so a demanding doctor is one thing, but a threatening doctor? That's another thing entirely. Narcolespy is a systemic neurological disorder that cannot be controlled by sleep scheduling. I'm going to type that part again: narcolepsy cannot be controlled by sleep scheduling. Some people's situations can benefit from it, and maybe some do OKAY with that, but you can't cure narcolepsy with a tight sleep schedule. That's medical fact.


I mean, even without work, what if you couldn't make her prescribed schedule work? Would she threaten to stop prescribing you meds then, too? Life is complicated and stuff happens - most of us couldn't stick to a rigorous schedule like she described because... well, that's life. That doesn't mean a doctor should discontinue your treatment like an axe over your head.


I'm not sure what your doctor means by 'dangerous.' Did she bother to specify?



SERIOUSLY???? Is this reasonable to anyone else?


So, there is wisdom in being prepared for a rough transition with something like narcolepsy... going back to work could take a weird/long transition.


That being said, I would switch doctors -- call up another sleep specialist and get your files transfered... find a doctor who has a better bedside manner, or at least someone who doesn't threaten to stop your prescriptions on the presumption that s/he can predict the future. Any lifestyle change (changing jobs, starting part time, starting full time, education, etc.) will change your life... hence, the name. Right? And an adjustment period will follow, plain and simple -- that's true for people who don't have narcolepsy, too. Just because you have narcolepsy doesn't mean the doctor should make you feel guilty for, well, LIFE happening.


I mean, part of treatment for a life-long disorder like narcolepsy includes adjusting for changes.


If anyone asks why you switched doctors -- you can say something as simple as "bed-side manner issues."


Good luck,


#42 kevers



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Posted 19 October 2013 - 05:04 PM

I think your doctor is being a bit unreasonable if you ask me.

#43 steaks



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Posted 20 October 2013 - 01:54 PM

If xyrem isn't knocking you out, you you probably need to take a break for it to come back full force.  I know this is amazingly difficult since you may not be able to function for  a few days, but it is worth it. 


I have found that a strong Mulungu tea can sometimes really help sleep, even better than a strong benzo, depending on the partial origin of the insomnia.  It's probably worth a try.  It is the only herb that ever really helped my sleep.

#44 Julie A

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Posted 23 October 2013 - 10:24 PM

Wow, thanks for the replies, guys :) Drago, I can't begin to express how grateful I am for all of the time and info u put into your reply and u have given me a whole lot to take into consideration.


Steak - I'm SOOO gonna find me some of that tea... And am really hoping I don't have to take a break from my xyrem... that would be disastrous!

#45 miren



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Posted 25 October 2013 - 09:37 PM

"Even during my sleep study a couple of years ago I overheard the techs discussing it. If you miss a single appt and reschedule it for after your next xyrem delivery, she'll cut off your xyrem shipment."


This, by itself, would make me switch doctors.  It's not as though you're taking an antihistamine and if you reschedule and miss a few days you might get a runny nose: Being deprived of regular narcolepsy meds is immediately emotionally damaging, financially damaging, and DANGEROUS. How are you supposed to GET to your appointment if you've run out of meds?  I have bounced between at least 4 different doctors (insurance company switches) in the last 6 years, and I've never heard anything close to this. Only the first one was an actual sleep doctor, the rest are regular GP's.


10mg of melatonin is a fudgeton (yeah, that's not a word); for a brief comparison just wikipedia it and note the reference to as little as 0.3mg being effective for circadian rhythm changes.  Everything I've read - and experienced - shows that melatonin is good for adjusting sleep schedules when you're not functioning on a 24-hour rotation (i.e., jet lag/time zone changes, shift work changes) but is not effective at helping to fall asleep when taken long term.  Have you tried a smaller dose, or a different brand?  Potency in supplements seems to vary a disturbing amount.


To fall asleep, I'd also recommend checking into valerian root.  This and melatonin (<1mg) were recommended by my doctor as the most minimal sleep aids, since taking any "real" sleep aid prevents me from waking for 12+ hours.  The valerian root just seems to be a mild anxiety reducer and since the only thing that tends to keep me awake is that I stress myself out about what will happen if I don't get to sleep fast/get enough hours of sleep, it's quite effective.


Finally, I'm just starting to check into ADA requirements; askjan.com got back to me quickly with some detailed advice.  I've been surprised at what employers are required to do (it's not as if they advertise it) and at how supportive a supervisor was when I mentioned to him that I would need accommodations in the future (pregnancy = no N meds).  Even if you switch doctors...which sounds like a safe bet...it might be worth finding out how your employer could (or must) work with you.  [[I'm in the USA, if you're not this is probably not applicable.]]


[Disclaimers:  I didn't read this whole thread, because I was caught so off guard by the part about the doctor that I quoted above.  And I'm not on Xyrem, therefore my reaction to sleep aids may be different.]