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#1 Tre

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Posted 11 December 2012 - 02:29 AM

Any help is appreciated and desired! please!!
So...I had left work 2 years ago with extreme sleep issues, stress and GI symptoms. After several attempts to remedy 2 different docs said "I think you have Narcolepsy"
Long story short.
-I laugh but after 2nd doc give in to testing
-Diagnosed with Narcolepsy after sleep study. Doc is good but pain to get appointments with.
- try nuvigil twice and get Steven Johnson like symptoms both time. (tongue/mouth sores, tongue peeling, rashes)
- try provigil with same symptoms
- can't have stimulants due to heart condition.

So doc suggests xyrem. I'm hesitant so he suggests second opinion on where to go with treatment and this is where all hell breaks loose for me.
I go to this doc at Jeff. He keeps saying I must have apnea, I've been gaining weight in my charts. He won't listen to the fact that all this started before the few pounds of weight gain and there were absolutely no signs of apnea even on the sleep study. He keeps saying maybe I'm just depressed and laying around. I was teaching high school and falling asleep in front of the kids...not really laying around jerk.
He wants another sleep study before he will do anything. I don't like it cause I'll have to pay out the butt but agree.
So....who's had a sleep study where jack hammers go off until midnight and after the city stops doing that outside your window they continue all night and day with normal construction -.- And then A day later my face is completely swollen cause I have a corn allergy and the electrode gel was apparently corn based....lovely.
I ended up taking clonazepam cause I was crying trying to explain to the people at the sleep study that this was insane but they didn't care.
End result guy says...something is wrong, your night sleep is terrible but no REM during the day so no Narcolepsy (4 naps btw cause no REM. Fell asleep in each at EXACTLY 10minutes....weird. First sleep study I had REM before even "falling into sleep") I tell him no $#@%! They jack hammered until midnight and I had to take clonazepam just to relax.
He says maybe you are having seizures and sends me to a neurologist. I schedule everything and despite telling them 3 times about the allergy waste 2 hours waiting cause they won't do the EEG test in the office cause of the allergy. I see the N and he says (after some questions and a look at the tests) "Why are you here you clearly have a sleep disorder....not seizures." This I know!
Now I have to wait til Feb. just to see the original doc. I had been on Prozac which we stopped for the second test. Stupid doc kept saying depression but it's really for my autistic OCD sort of tendencies.
I do have a thyroid problem (under control), a VSD (heart condition), bleeding disorder, and meningitis in 2008 just before all this crap started to go down.
So now I'm at a loss. This "second opinion" was supposed to be from some expert in the field who spent more time telling me how he created the sleep tests in use today then actually helping me. He even questioned the validity of me saying I coulnd't have sti,ulants and made me make a second appointment with the cardiologist just to confirm this for him. My husband and I were so pissed with every person at Jeff. Funny my endocrinologist is at Jeff and I love him.
I have no idea what to do. I feel lost and alone and like there is no help. All I want is to be awake and normal and be back at work. Now my teaching cert will expire and I've got little to no options since the docs don't want me driving. Can't find any work at home. Living on retirement at 30 (it was just my birthday) My inlaws are supportive by my family just keeps asking what is wrong with me and why don't you just wake the hell up. This second opinion doc made me feel horrible. I just wanted to stay on the provigil. It was so working for me except the side effects. Now I even find myself doubting it's Narcolepsy. SS says "Narcolepsy is treatable with meds" well apparently not if you're me....and the local vocational office did little to help me find a job since I'm a bit over qualified compared to their normal applicants and is closing my file for now since I'm still "having medical issues."
Is there nothing I can do for treatment, diagnosis, or work?
I hate sounding pitiful but by now I had planned to have a house and kids and now we are sitting in limbo.
Thank you for any advice

#2 DeathRabbit

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Posted 11 December 2012 - 12:01 PM

Any help is appreciated and desired! please!!
So...I had left work 2 years ago with extreme sleep issues, stress and GI symptoms. After several attempts to remedy 2 different docs said "I think you have Narcolepsy"
Long story short.
-I laugh but after 2nd doc give in to testing
-Diagnosed with Narcolepsy after sleep study. Doc is good but pain to get appointments with.
- try nuvigil twice and get Steven Johnson like symptoms both time. (tongue/mouth sores, tongue peeling, rashes)
- try provigil with same symptoms
- can't have stimulants due to heart condition.

So doc suggests xyrem. I'm hesitant so he suggests second opinion on where to go with treatment and this is where all hell breaks loose for me.
I go to this doc at Jeff. He keeps saying I must have apnea, I've been gaining weight in my charts. He won't listen to the fact that all this started before the few pounds of weight gain and there were absolutely no signs of apnea even on the sleep study. He keeps saying maybe I'm just depressed and laying around. I was teaching high school and falling asleep in front of the kids...not really laying around jerk.
He wants another sleep study before he will do anything. I don't like it cause I'll have to pay out the butt but agree.
So....who's had a sleep study where jack hammers go off until midnight and after the city stops doing that outside your window they continue all night and day with normal construction -.- And then A day later my face is completely swollen cause I have a corn allergy and the electrode gel was apparently corn based....lovely.
I ended up taking clonazepam cause I was crying trying to explain to the people at the sleep study that this was insane but they didn't care.
End result guy says...something is wrong, your night sleep is terrible but no REM during the day so no Narcolepsy (4 naps btw cause no REM. Fell asleep in each at EXACTLY 10minutes....weird. First sleep study I had REM before even "falling into sleep") I tell him no $#@%! They jack hammered until midnight and I had to take clonazepam just to relax.
He says maybe you are having seizures and sends me to a neurologist. I schedule everything and despite telling them 3 times about the allergy waste 2 hours waiting cause they won't do the EEG test in the office cause of the allergy. I see the N and he says (after some questions and a look at the tests) "Why are you here you clearly have a sleep disorder....not seizures." This I know!
Now I have to wait til Feb. just to see the original doc. I had been on Prozac which we stopped for the second test. Stupid doc kept saying depression but it's really for my autistic OCD sort of tendencies.
I do have a thyroid problem (under control), a VSD (heart condition), bleeding disorder, and meningitis in 2008 just before all this crap started to go down.
So now I'm at a loss. This "second opinion" was supposed to be from some expert in the field who spent more time telling me how he created the sleep tests in use today then actually helping me. He even questioned the validity of me saying I coulnd't have sti,ulants and made me make a second appointment with the cardiologist just to confirm this for him. My husband and I were so pissed with every person at Jeff. Funny my endocrinologist is at Jeff and I love him.
I have no idea what to do. I feel lost and alone and like there is no help. All I want is to be awake and normal and be back at work. Now my teaching cert will expire and I've got little to no options since the docs don't want me driving. Can't find any work at home. Living on retirement at 30 (it was just my birthday) My inlaws are supportive by my family just keeps asking what is wrong with me and why don't you just wake the hell up. This second opinion doc made me feel horrible. I just wanted to stay on the provigil. It was so working for me except the side effects. Now I even find myself doubting it's Narcolepsy. SS says "Narcolepsy is treatable with meds" well apparently not if you're me....and the local vocational office did little to help me find a job since I'm a bit over qualified compared to their normal applicants and is closing my file for now since I'm still "having medical issues."
Is there nothing I can do for treatment, diagnosis, or work?
I hate sounding pitiful but by now I had planned to have a house and kids and now we are sitting in limbo.
Thank you for any advice

God, some sleep docs can be great while others are so clueless. Betting the apnea guy is a pulmonolgist, I'd actually stake my life savings on it. I'm pretty sure they get a kickback everytime they prescribe CPAP or something. Also, yes that sleep study is completely invalid, not only because of the jack hammers, but the clonazpam is what suppressed your REM sleep. Nearly all antidepressants and anti anxiety pills do this and ideally, you're off them for two weeks before a PSG/MSLT. Sorry you are having such a rough go, but that doctor is a moron so find a new one if you can.

#3 Tre

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Posted 11 December 2012 - 12:32 PM

Funny enough...you lost your life savings (gives u her address) Mail it here lol
The first doc who diagnosed narcolepsy and has been helpful as he can is a pulmonologist.
The guy disputing the Narcolepsy is the Neurologist....go figure.
But then again there's my luck for ya.

#4 Megssosleepy

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Posted 12 December 2012 - 12:11 PM

Wow, I am so sorry you are having such a terrible time! I think you should stick with the original guy and go on Xyrem, Its not scary once you are used to it! Sounds like it may be your only option to get some relief! I was really worried at first, and now I love it! It feel so good to sleep through the night, every night!! I still have EDS but, have fewer sleep attacks... I find that if I am up and moving (the weekends) I dont need my stimulant. I work a desk job... and HAVE to take my adderall :( or I would be in a constant state of blahhhh.

There are plenty of helpful post on here about the Xyrem, read over them and change your mind!

You can still have that house and kids! Good Luck!

#5 SeeBee

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Posted 13 December 2012 - 05:01 PM

So sorry to hear that it's been going so badly :(

I'd definitely suggest looking for a new doc, and only sticking with the pulmonologist if there's absolutely nobody else. The pulmonologist, while obviously a good guy who will do all he can to help, probably doesn't have the knowledge or resources a sleep specialist would in regards to N. This leaves some responsibility on you to do tons of research, not only to fact-check him, but also to find more options and workarounds. Not that this is necessarily a bad thing, but I don't often have that kind of time or patience, so I personally find it much easier to deal with docs who already know their stuff. (By the way, if it wasn't already obvious, your Jeff doc is pretty much worthless. Empathy and data analysis are critical in a doctor's success, and he clearly lacks both qualities.)

I'd also suggest giving Xyrem a go. Best case scenario, it works for you. Worst case scenario, it doesn't, and you're then free to give Provigil another shot because you've exhausted all other options, for now.

One more thing...I know this is the hardest one, but try not to worry about how much your life isn't going according to plan. Doing so is a great way to forget about all the good things that are already there. Besides, would you really be in any better place with a mortgage, kidlets, AND this to worry about? Just be good to yourself, and do the best you can with what you've got. That's all that really matters, in the end :)

Best of luck while you continue to get things sorted out. Keep us updated!

#6 angeline

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Posted 17 December 2012 - 10:03 PM

I have taken Xyrem. I did not have a positive outcome. I am glad my husband was there when I had a severe anxiety attack in the middle of the night. I awoke out of a sound sleep, feeling like I was coming out of my skin. It was awful! I was real hot all over. I was screaming and wiggling around so much my husband called 911; he didn't know what else to do. My lungs were clear but I felt like I couldn't breath. The ER doc said I had to discontinue bc I was not supposed to be taking it due to sleep apnea. This triggered an anxiety attack.

I had never had an anxiety attack before and I never want it again!

I don't want to frighten you. Do your research and take it slow if you decide to take it. They may want you to titrate quickly. Use common sense, okay.

There are many people who do well on Xyrem and you may join that group. God keep you safe while you try things to improve your life.