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Please Help! Should I Keep Trusting My Doctor?!


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#1 MyMedsRuleMyLife

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Posted 03 December 2012 - 10:49 PM

I was diagnosed with narcolepsy w/o cataplexy within the past year. I switched doctors as my health insurance did not cover my previous. Had to again have the dreaded MLST test with new doctor. I get the feeling that she does not know much, if anything, about narcolepsy. Please let me know if her advice seems wishy-washy to you:

(1) She keeps pushing me to increase to the 4.5 mg dosage of Xyrem twice nightly. I started on a low dosage of 2.25 mg twice nightly for 2 weeks (I am unusually sensitive to a lot of medications so we extended the time period where I gradually increase to the maximum dosage) but I slowly made the arduous uphill battle but maxed out at 4.25 twice nightly (never even achieving the "ideal dosage of 4.5 twice nightly or 9 mg/night)....

Sometimes I cannot sleep and have anxiety issues after taking Xyrem...sometimes it makes me hungry??? or at least craving food...but mostly I wake up in the middle of the dose and stumble in to the bathroom because Xyrem makes me have to urinate terribly...followed by vomiting (from moving around and getting the spins). On occasion I have smacked my head on the bathroom granite counter tops while flushing the toilet, missed the toilet, vomited in the sink etc...etc...This all occurred while working my way up to 4.00 mg twice nightly over MONTHS of small 0.25 increases in my nightly dosage. When I finally increased to the 4.0 mg twice nightly, I.....peed the bed....:(:o...YES, I am shamefully, a 24 year old, bed wetter...Therefore, I dropped the dosage back down to 3.25 mg twice nightly and at my appointment today she told me that our ultimate goal is to reach the ideal dosage of 4.5 mg twice nightly...even though I told her I am feeling better on the 3.25 mg dosage (though I sometimes still wake up and hang my head in the toilet).

I have read some other people's posts and it seems that everyone takes a dosage of Xyrem that works best for them....??!! Uhhh...so why does she keep pushing me to take more and more of this medication that seems to wreak havoc on my stomach, bladder, and sometimes gives me insomnia at higher dosages?! Am I wrong? Will this horrid medication really only work correctly when I reach the 4.5 mg dosage?


(2) I kept telling her the medication makes me sick...I can't always sleep on it. It makes me anxious and nervous and I become an insomniac (imagine my surprise! I have never had issues initially falling asleep at night...I almost miss the days when all I had to do was drop down on to my pillow and fall asleep within 90 seconds...at 2 pm after a full nights rest -- haha). Now instead, I find myself flailing around at night....I will actually wake up upside down in bed, smack my boyfriend in the face with flailing limbs (legs, arms, hands, feet- you name it the poor guy has been smacked with it in the middle of the night). She reviewed my sleep study results again and said I had mild PLMD...so she prescribed me Pramipexole to take in addition to the Xyrem....Aren't periodic limb movements common in narcoleptics? And not to my surprise, the new medication didn't help anyway...has anyone else with narcolepsy been prescribed this medication as well?

(3) Her ultimate goal is to wean me off of my Adderrall (45 to 60 mg/day) prescription. So she instructed me to reduce my dosage the first month I began Xyrem. I reduced from a full 60 mg/day to 30 to 45 mg/day per her instructions....Never had I had a worse month in my life...I was so tired the entire time, I cannot even remember 75% of what happened....I blanked out a lot during that time...automatically finishing tasks at work without too much idea of how I was finishing things. On top of not sleeping at night on the Xyrem...I had less stimulant during the day to carry me through...I was sleeping better without the Xyrem at this point!

I have read on this forum that a lot of people have to take some sort of stimulant in addition to the Xyrem...right? My Dr is telling me that I should be able to cut out the stimulant completely once I get to the maximum, ideal dosage of Xyrem....

(4) Finally, today she told me that I have to have the PSG/MLST at least once a year....Has anyone else's Dr told them this? I mean, my medication is already controlling my life...the sleep study is a HUGE pain in the...butt...for me. I go in to see her already once a month (which I also find a pain) so she can take my blood pressure, give me bad advice, and ask me the Epworth Sleep Scale crap (that hasn't budged from wayyy too tiredd to be normal on the point scale) while telling me she thinks I'm improving....

(5) Dr. never seems to even know how I get my Xyrem medication...I keep telling her the mail it too me...she then asks me if I need a refill and if she should print out the prescription for me (but...her PA faxes it in directly every few months I believe because the Xyrem people just call me to ask if I need it refilled...)...I asked her a question about it once (a very general one when I first started taking it...I think something along the lines of...why am I not able to sleep on it when it is supposed to knock you out cold...). Her answer was to ask the Xyrem hotline nurse.....

(6) She didn't explain anything to me...I have been trying to read and research through this forum etc...on narcolepsy...how it's tested and what is indicative of a positive diagnosis. I don't even know my full PSG/MLST results...she never really went over them with me...except for letting me know that I went in to "dream-sleep" at least 3/5 times during my MLST with an average of less than 90 seconds. And that it indicates narcolepsy....

Has anyone else experienced anything like this at all?

Thank you for your help! (I'm so desperate and confused at this point!)

#2 MyMedsRuleMyLife

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Posted 03 December 2012 - 10:53 PM

Sorry, I obviously meant MSLT (not MLST)!

#3 munky

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Posted 04 December 2012 - 02:09 AM

If your doctor isn't listening to you or taking your complains seriously, and she can't answer questions about the medication she prescribed for you, I would say it is most definitely time to seek a second opinion.

I would suggest you request a copy of your medical records, including the PSG/MSLT test results and all medication changes from your current doctor, and take them with you to your new doctor.

From what I've read on here, most people have had the best results from a neurologist/sleep specialist, rather than a pulmonologist/sleep specialists. A lot of pulmonologists are also sleep specialists, but their real specialty is in treating OSA, rather than neurological disorders like narcolepsy. Unfortunately, there are a large number of doctors who, even when they're in over their heads, refuse to recognize that fact and refer a patient on to someone who might be able to help them better. It can be hard to find the right doctor, but it's definitely worth the trouble!

--munky

#4 cloudtalk

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Posted 04 December 2012 - 02:29 PM

I'm not a doctor or specialist, I only know about what I've read about or heard from my doctor. But for what it's worth, in my opinion, your doctor sounds terrible! I think you should definitely start looking for a new doctor, if you can! But yeah, get a copy of all your records from this one so you don't have to do the sleep study over again.

- From what I understand, 4.5 is not the ideal dose for everyone, it is the maximum safe dose, while 3.0 is the minimum effective dose. I have been taking 3.0 x2 because I was having severe anxiety at higher doses. My doctor said that if it is working for me, there is no reason I need to raise the dose.
- I also get the munchies and have to pee a lot when I take xyrem. I told my boyfriend not to let me snack when I'm on it (and I'd try to restrain myself), and I make sure to pee before I go to bed.
- Why would you have to do a sleep study every year after you have already been diagnosed with narcolepsy? Sleep studies are extremely expensive, and you've already been diagnosed, that isn't going to change. Is your doctor trying to get more money out of you, or does she just not know what she's talking about??
- It sounds like you are having an atypical reaction to xyrem. I think that for most people (myself included), once you fall asleep on it, you are knocked out, and don't move much if at all. I thrashed around in my sleep before I started taking xyrem, but when I'm asleep on xyrem, I'm like a dead person. The whole point of xyrem is that it helps you get a deep, restful sleep. If it's not doing that for you, then it's not working.
- I think that it might be possible for some people to stop taking a stimulant if xyrem is working really well for them, but I can't think of any reason why that must happen. I still take ritalin as needed with xyrem, and I know that other people take xyrem as well as stimulants. Your doctor should be trying to help you feel better, so you can have a better quality of life. It doesn't sound like she's even taking that into consideration.

Good luck!

#5 MyMedsRuleMyLife

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Posted 04 December 2012 - 07:21 PM

Thanks for such helpful advice! I just wanted to make sure it wasn't just me being crazy and ignorant! I really appreciate it!

#6 SleepyRaffie

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Posted 04 December 2012 - 10:56 PM

I am sorry to hear you are going through this. You are right to look for another doctor. I backed off the full dose of Xyrem simply because it was making me groggy the next day and my doctor did not bat an eye. We are currently working on getting me to a dose of stimulants that works for me. From what I understand a lot of people on Xyrem still need daytime stimulants. I am one of them. I believe the Xyrem nurse actually told me that bed-wetting, vomiting and even sleeping through the second dose alarm can be signs that the dose is too high (I think if it is a continuing issue-not sure though). At this point a call to your Xyrem nurse might be useful because it seems they will be able to give you more information than the doctor even though they cannot tell you how to proceed (at least mine was very helpful). As for the yearly sleep study... huh? I have not heard of this.

I hope you are able to get this straightened out.

#7 Megssosleepy

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Posted 05 December 2012 - 12:55 PM

I am not sure if your doctor is terrible, it really is important to get to 4.5x2. It took me long yucky months to get used to Xyrem, and a few weeks to get used to the 4.5 dose... now that Ive been on it for over a month or so it works just as it should. No random wake ups, I dont always have to pee taking the second dose. I think you should try and take the next step to the proper dose, it took someone on NN to tell me that... I was scared and having a rough time with it... it was some of the best advice I have received... I now can sleep more then 4 hours on each dose!!

Also, anytime I am out of bed or am awake on it I feel really ill... you shouldnt be awake. Even when I go to use the rest room (between doses) I make it quick as possible! The longer you are out of bed the more your stomach will want to get sick. Try drinking less liquid as it get closer to bedtime! I still have to go to the bathroom 50% of the time (before taking dose 2) but Ive been working on that!

Yes, most of us still need some stimulates during the day, I take my about 65% of the time... really only as needed. You are on a pretty high dose of Adderall and she is prolly just trying to wean you down a bit. The longer you are on Xyrem the less your should need to take.

The whole bit about doing a sleep test every year is something I have never heard of... and is just away to get more money out of you! I would fight that... plus you have to go med free!! no thank you!

I am not saying your doc is great by any means... I just wanted to point out that what she is doing is trying to help you. (Maybe not with the best approach)

#8 MyMedsRuleMyLife

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Posted 06 December 2012 - 01:27 AM

I really appreciate all of the input! I am not saying I think my doctor is terrible, only that I have no idea if she has any idea what she is talking about! I just don't feel 100% confident with her. I do always go to the bathroom before bed, but at one point was getting up 4-5 times in the middle of the night! I also try not to drink anything approximately 2 hours before. I guess I should mention that I have had issues with my kidneys in the past (kidney reflux, stones, and a couple infections)-so I'm not sure...but maybe it has something to do with it too?...

I'm not sure whether my doctor is a pulmonary specialist, but I did consider the fact that if she is, a narcoleptic patient, must seem like a gold-mine!

I will definitely request my PSG/MSLT test results and seek a second opinion (just in case!) and give my Xyrem nurse a call too.

Thanks again!

#9 Megssosleepy

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Posted 06 December 2012 - 12:23 PM

I really appreciate all of the input! I am not saying I think my doctor is terrible, only that I have no idea if she has any idea what she is talking about! I just don't feel 100% confident with her. I do always go to the bathroom before bed, but at one point was getting up 4-5 times in the middle of the night! I also try not to drink anything approximately 2 hours before. I guess I should mention that I have had issues with my kidneys in the past (kidney reflux, stones, and a couple infections)-so I'm not sure...but maybe it has something to do with it too?...

I'm not sure whether my doctor is a pulmonary specialist, but I did consider the fact that if she is, a narcoleptic patient, must seem like a gold-mine!

I will definitely request my PSG/MSLT test results and seek a second opinion (just in case!) and give my Xyrem nurse a call too.

Thanks again!


Something I learned about having to Pee a ton at night... (I used to get up a ton 4/5 times a night) I would wake and be like do I have to Pee? I better Pee now so it wont wake me up later... ect ect

I heard that when you are in SWS your bladder stops producing urine. This is why we have to get up so much cuz our bodies never really rest... once you are getting more SWS hopefully you will have to pee less! I think the nights I dont have to Pee during my wake up I feel asleep fast and slept better...

Last night it took me almost an hour to fall asleep and woke before I should and had to rush to the potty lol... but a couple nights before my alarm woke me and I didnt need to go... Just some thought for you.

You should look into some other Docs. until you find one who listens and takes care of you. My sleep Doc sucks, and when I feel the need to see one again it wont be him... I got what i needed and I plan on educating myself rather then telling my troubles to a stupid quack who is just a prescription pad lol... I got my Xyrem and stimulants the rest is up to me!