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Is My Doc Being Unreasonable?


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#1 Julie A

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Posted 24 September 2013 - 03:43 PM

I have been on xyrem and methamphetamine now for over 5 years and my treatment has been "very successful" according to my doc. I have been a stay at home mom during these 5 years and I have felt that my only issue has been that I still take a 1-1.5 hour nap around 11:30am. Doc said this is no problem as it's not interfering with my life.
 
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!
 
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.
 
I have a 10 and 13 year old kids. They don't even get out of practice/performance activities until 9 or 10pm 3 days per week. That on top of homework help, making dinner(sometimes we don't eat dinner until 9 or 9:30 if it's a late night), laundry, etc., How am I supposed to do this? Here in PA, during the summer months, the sun isn't even in bed until 9:30!
 
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.
 
SERIOUSLY???? Is this reasonable to anyone else? 


#2 Megssosleepy

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Posted 24 September 2013 - 03:48 PM

Wow,

 

Sounds like your doc has some issues with you working!!

 

I go to bed around 10:00 10:30 and wake up just before 6:00.  You just need to make sure you get 8 hours with Xyrem.  I am confused why you won't be allowed any sleep aid if you are working??? 

 

I think you need a new doc!



#3 IdiopathicHypersomniac

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Posted 24 September 2013 - 04:26 PM

She's not being unreasonable.  She's being cautious.  If you're taking Xyrem and Desoxyn, and need those naps, how can you possibly work FT?  Maybe PT in the afternoon.  In order for you to work FT and manage a family, you must be able to go 16 hours without napping.



#4 DeathRabbit

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Posted 24 September 2013 - 05:07 PM

I'm kind of with IH.You might want to try part time just to get your feet wet again. Who knows, maybe being more mentally engaged will cause you to improve and the full time maybe be an easier transition. I know when I forcibly intellectually stimulate myself, even though I usually feel too tired to do it, when I make myself be mentally active, my symptoms will improve over time. If I let myself veg out for liek a week, I'l lget much worse. But it also sounds like your doc is being a penis, not being willing to work with you like that. Your doctor works for you, not the other way around. If she keeps this up, fire her ass and get a new one.



#5 Julie A

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Posted 24 September 2013 - 07:04 PM

Thank you all for your replies.

 

Although I am in agreement with the "being cautious" thing, I feel like it's more than that. First off, Yes, I am on Xyrem and Desoxyn, but I am prescribed up to 4 of the Desoxyn per day and am currently only taking 2 since I have the time to nap and feel better when I do. So my treatment isn't maxed out yet. When I was on Adderall, taking 2 per day, I was fine - but once I took that 3rd, I felt tweaky/jittery, so I am hesitant to take more of the desoxyn. But if needed, the option is there for me. Why didn't she bring that up? Also, I have been talking about going back to work for over a year with her, and preferably part-time at first. She was happy to hear about my plans. It was only this recent discussion that kind of blew things up.
 
To be fair to her, I am taking 10mg of melatonin to knock myself out... which is double the recommended dosage on the 5mg bottle. But I read it is safe to take a little more and definitely better than doubling a dose of tylenol pm or benedryl so it seemed like a good alternative to me. She said it's an insane dose.... ok, I'll give her that. 
 
To be a little "unfair" to her (I suppose), she is quite a stickler and known to be over the top about things. I notice her own employees making comments under their breath and rolling their eyes over medication issues she requires. 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. She has never been married and has no kids, so practicality in that area is something she probably can't really relate to since for her, being in bed by 9pm is probably not an issue.
 
I'm beginning to wonder about how many N patients she actually treats. I only see elderly patients in the waiting room and only find educational material on RLS and Sleep Apnea there. I kind of feel like she's a "by the book doctor."  
 
The issue with taking no sleep aid at all... I don't get that. The way she explained it to me when I explained that same sleep pattern in my original post up there went along the lines of this:
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You have severely messed up your sleep habits. Your sleep schedule is basically 1am-1pm. You wake up to deal with kid duties, then because of the light exposure, are unable to fall back asleep until 11:30 or so, making your early afternoon "nap" just an extension of your overnight sleep... which isn't a nap at all. You need to be in bed by 9pm, wake at 6am, have a 20min nap 4.5 hours later at 10:30am (90degrees from the center of your sleep), then a 1-1.5 hour nap another 4.5 hours later (exactly 180 degrees from the center of your sleep) at 2:30pm. The 180 degree nap prevents the sleep from running into nightime sleep. Any earlier or later and it's just an extension of that nighttime sleep. As for taking a sleep aid, you might as well just hit yourself over the head with a hammer to get the same effect. As for your kids being up so late at night, you are setting them up for sleep and weight issues in the future. (She did, of course add in that that's not her department, just an FYI for me.)
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So basically... 4.5 hours after a solid 8-9 hour sleep = short nap... 4.5 hours after short nap = long nap... then I will automatically fall asleep again at 9pm and sleep solidly until 6am.
 
Her explanation to me does make sense... However... Ummmm... isn't abnormal sleep schedules "normal" for N's? Is my 11:30 nap just an extension of my sleep? But before I was treated, I worked full time and have ALWAYS had issues with the 10:30-11:30 hour, even as a child! Isn't it EXTREMELY difficult to regimen ANYONE'S sleep to those restrictions, ESPECIALLY a N patient? My sleep is much more regimented than it was before treatment but GEEZ! That's a whole lot of rules! I see many, MANY N patients on here who are not knocked out by the first dose of xyrem and many who take melatonin or are even  prescribed, ambien/gabapentin/xanax, etc. to help put them to sleep along with the xyrem. People take naps after work... It just seems to me that this advice is right out of a book and not very "real life" based. But I wanted to run this by other N's to see if this is REALLY a reasonable expectation for being a working N.


#6 IdiopathicHypersomniac

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Posted 24 September 2013 - 08:15 PM

Your doctor sounds like a witch!



#7 IdiopathicHypersomniac

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Posted 24 September 2013 - 08:17 PM

If my doctor was like that, I'd run to the nearest exit so fast my feet wouldn't even touch the floor.  Get yourself another doctor.



#8 Ferret

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Posted 24 September 2013 - 09:10 PM

I agree with all of the responses. Your Doctor is a control freak and is NOT listening to your needs and lifestyle commitments.

Off with her head!

But, don't fire her until you've got another Doctor who understands...no Doctor = no Meds.

BTW, I think I would have already asked her how many other Narcoleptic patients she's treating...kind of like asking a Surgeon how many times he's performed a particular operation. I want experience...the more the better...and ongoing education in the field to keep up to date with the latest meds and developments.



#9 Julie A

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Posted 24 September 2013 - 09:25 PM

PHEW!!!! So I'm NOT crazy! Thanks guys! That's what I was thinking... Even came back from that appt crying, wondering how I could possibly achieve those expectations... And sure I was just going to be a failure if I tried. My kids are older now and as of one month ago are now getting themselves ready and  walking to school. I'm no use just sitting here and would LOVE to be independent again. I was hysterical and thinking I was destined to be a sick shut in for the rest of my life trying to live the way my doc wants!

 

Ridiculous isn't it? It seems like her requirements are just those two options... Be a homebound well-treated Narcoleptic OR A working very sleepy person with no meds and no drivers license.

 

Looking up a new doc now... I really hope the new doc doesn't put me through all of those tests again but I have a feeling they will. Oh well... better in the end anyway.

 

 

Thank you all very much :)



#10 IdiopathicHypersomniac

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Posted 25 September 2013 - 12:12 AM

Most sleep docs only have one or two narcoleptics.  It's that rare.  Just tell that witch to release your file -- then take it to your new doctor.  Just tell her you're moving.  One word of caution -- some doctors won't prescribe Xyrem and Desoxyn, so make sure you find one that will before you change.



#11 doinmdirndest

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Posted 25 September 2013 - 12:49 AM

be sure desoxyn is a drug any new doctor you may consider is willing to prescribe.  these days, many md's are positively phobic about amphetamines, regardless of your diagnoses/indications.   especially desoxyn.



#12 Julie A

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Posted 25 September 2013 - 01:32 AM

Thanks both of you. So how do you suggest I go about this? Do I make an appt with a couple of sleep specialists as a sort of consult, bring my records, and ask how they would go about treating me?Then decide which to stick with? I sort of feel like thats some really wrong form of doctor shopping. I don't really have any option other than desoxyn... provigil gave me strange side effects, was on dextro for a couple of years and hated the jittery/zombie-ish feeling, adderall for a couple of years but unable to take more than the 2 pills bc of the jitters and finally asked to be switched when I began to feel things "crawling" in my scalp. So far, the desoxyn is the only amphetamine that is "smooth" and I don't have side effects from.

 

How would others go about this, I wonder?



#13 DeathRabbit

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Posted 25 September 2013 - 09:17 AM

To be fair to her, I am taking 10mg of melatonin to knock myself out... which is double the recommended dosage on the 5mg bottle. But I read it is safe to take a little more and definitely better than doubling a dose of tylenol pm or benedryl so it seemed like a good alternative to me. She said it's an insane dose.... ok, I'll give her that. 

 

I have some 10mg melatonin pills I got at Walgreens. But there's no way you can really OD on that stuff and it's not going to do anything with your Xyrem. I wouldn't give her that point either if I were you. Seriously, you could go chug a whole bottle right now and it's not gonna do anything other than make you pretty drowsy and you'd prolly end up not even absorbing most of it.



#14 ironhands

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Posted 25 September 2013 - 09:41 AM

I have some 10mg melatonin pills I got at Walgreens. But there's no way you can really OD on that stuff and it's not going to do anything with your Xyrem. I wouldn't give her that point either if I were you. Seriously, you could go chug a whole bottle right now and it's not gonna do anything other than make you pretty drowsy and you'd prolly end up not even absorbing most of it.

 

How effective is melatonin?  Wondering if it'd be useful for me.  I have no trouble falling asleep as it is, staying there and regulating it is of course an issue.  How long does it stay in your system?  What would happen if I popped one in the morning?



#15 DeathRabbit

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Posted 25 September 2013 - 09:59 AM

I never found it to have an overly profound effect. It did seem to give me some sleep inertia in the morning, though.



#16 IdiopathicHypersomniac

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Posted 25 September 2013 - 11:31 AM

Desoxyn is actually gentler than Dexedrine, but has a very bad stigma.  You could try Vyvanse.  In your case, it looks like you have to go doctor shopping.  If her bedside manner is that bad, and she doesn't understand that every narcoleptic is different, well, why stay with her?

 

I have the opposite problem.  My doctor is very kind, but won't touch Xyrem.



#17 DeathRabbit

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Posted 25 September 2013 - 11:39 AM

Desoxyn is actually gentler than Dexedrine, but has a very bad stigma.  You could try Vyvanse.  In your case, it looks like you have to go doctor shopping.  If her bedside manner is that bad, and she doesn't understand that every narcoleptic is different, well, why stay with her?

 

I have the opposite problem.  My doctor is very kind, but won't touch Xyrem.

My first sleep doc wouldn't touch Xyrem either. But in his case, it was because he knew jack*BEEP* about N, not because the side effects or what all worried him. He actually said "I don't know why you would want to take something like that. It will make you sleepy." I was all I could do to keep from shouting "Duh, that's *BEEP*ing point! It is supposed to help you sleep better at night so you don't want to all day!"



#18 IdiopathicHypersomniac

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Posted 25 September 2013 - 02:08 PM

Trazodone, Xanax, and Melatonin will hang you over even more the next day.  You're taking the wrong drugs DeathRabbit.  Probably the best drug for sleep is Lunesta or Ambien CR.  You want something that will be out of your system by the morning.  It depends, you could already have good quality sleep, and it depends on what your PSG shows.  They would have to do it once on nothing, and then do it again after 8 weeks of Xyrem and compare.  Unless you're in research, no doctor will do that.



#19 ironhands

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Posted 25 September 2013 - 03:49 PM

That's why I want to build my own home PSG apparatus.  There are already a few hobby EEG kits that would give a basic interpretation of sleep states.  <200$, more accurate info than those mass-produced gadgety ones from what I've seen



#20 Julie A

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Posted 25 September 2013 - 04:48 PM

I have some 10mg melatonin pills I got at Walgreens. But there's no way you can really OD on that stuff and it's not going to do anything with your Xyrem. I wouldn't give her that point either if I were you. Seriously, you could go chug a whole bottle right now and it's not gonna do anything other than make you pretty drowsy and you'd prolly end up not even absorbing most of it.

 

Honestly, I agree with you DeathRabbit, but since I mentioned that she was against the melatonin, I only felt it was it was right to throw in that I'm not taking a teeny tiny dose... and probably most docs would not suggest a dose of 10mg. I didn't even know it came in 10mg! The most I've seen is 5mg. I typically take 10mg, but if 2 hours rolls around, and I'm still awake, I'll take more.

How effective is melatonin?  Wondering if it'd be useful for me.  I have no trouble falling asleep as it is, staying there and regulating it is of course an issue.  How long does it stay in your system?  What would happen if I popped one in the morning?

Ironhands - Well here is what I have read about Melatonin (and please fellow members, feel free to correct me if I'm wrong as I am no expert here!). Melatonin is a hormone your body releases and makes you sleepy. Can't say how they put it in a bottle but I assume it's a synthetic form. It is light soluble... so similarly to a sleepy person being exposed to bright light, whick makes them less sleepy, if you take it and hang out watching your bright TV, it won't have the same effect as if you take it as you are laying down in a dark room. It can definitely make you drowsy in the morning! Super drowsy. I also read that it is not something you take to stay asleep as it is really for just the purposes of falling asleep. Of course, how that makes any sense at all, I don't know because as I said, it stays in your system long enough to make you drowsy in the morning! 

 

My personal experience is this: I have been taking it on and off since I was about 13 which is when I decided i needed to do SOMETHING about the fact that I was up until 3am laying in bed and sleeping through school. They didn't have xyrem then and the amphetamines i was treated with made me hallucinate and worse (something about being teenager and the brain handling them differently for some people vs the way it handles them as an adult.) The first few days of melatonin for me is always an adjustment because of the morning drowsiness but I get over that within a week and then it just puts me out with no issues in the AM. My hubby alternates a few weeks of melatonin with a few weeks of benedryl to go to sleep (ambien made him crazy so he decided to stay away from those rx sleep meds). He has the same effect from both the melatonin and the benedryl. Suffer for a couple of days with morning drowsiness, then a few weeks of just getting put to sleep with no grogginess, then they stop working at all and he alternates back to the other one. He only takes the 3mg melatonin which works for most people who use it, I think.

 

I guess it's different for everyone. 

 

Desoxyn is actually gentler than Dexedrine, but has a very bad stigma.  You could try Vyvanse.  In your case, it looks like you have to go doctor shopping.  If her bedside manner is that bad, and she doesn't understand that every narcoleptic is different, well, why stay with her?

 

I have the opposite problem.  My doctor is very kind, but won't touch Xyrem.

 

I will have to look into Vyvanse. I don't know much about it. Thank you. I don't know what I would do without my Xyrem! Took a couple of years for full effect for me but it started making me wake refreshed almost immediately. Sleep paralysis was gone after about a year. 2 years in, my hallucinations were down to only auditory symphonies/"concerts" as i was waking. The last visual was my ceiling looking like TV snow/static and that was probably a year and a half ago. I have had no cataplexy, but I don't know if that's because of the xyrem as I just stopped having that at 16 years old anyway. (though i THINK I had an episode last year... it has been so long I almost couldn't tell if it was that or i had a mix of a seizure/fainting episode after my old  pain trigger when I stubbed my toe.) Either way, it has changed everything for me! If only I could find a doc as nice as yours that ALSO will continue my xyrem.

That's why I want to build my own home PSG apparatus.  There are already a few hobby EEG kits that would give a basic interpretation of sleep states.  <200$, more accurate info than those mass-produced gadgety ones from what I've seen

 Now THAT would be awesome!