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New Dr Telling Me I Don't Have Narcolepsy!


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#1 klperkins67

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Posted 06 December 2012 - 09:39 AM

I have always had problems with excessive sleepiness and having what I describe as "sleep attacks" where I get an overwhelming need to sleep and if I fight it, I get a migraine. I've even totaled my car having fallen asleep trying to fight a sleep attack. I had a sleep study done in Jan 2010 and was diagnosed as having narcolepsy without cataplexy. On my MSLT results, it says "results are indicative of hypersomlenence." My Dr then tried both Nuvigil 150mg and Ritalin LA 20 and 30mg and the Nuvigil worked best so I stuck with it. It was like a fog had been lifted off everything. I was much more upbeat, more optimistic, more social. Just better all around. I got pregnant Oct 2011 and since we actively tried for her, I stopped a month prior to us trying and have been off of my meds since, since it's a class C drug and its effects are unknown during pregnancy and breastfeeding.

I'm not breastfeeding because I had assumed I would resume my meds ASAP. Well, that hasn't happened. My husband is military and our insurance is Tricare. Unlike when we were stationed in Hawaii where my regular doctor looked at my test results, trusted me, and just gave me my meds, my regular doctor here Tricare referred me to wouldn't even let me bring up the topic. They said they could only see me for one problem per visit so they just automatically sent off for a referral to a sleep specialist. I got it and went Tuesday.

Long story short, this new Dr doesn't think I have narcolepsy. He insists I have sleep apnea caused by pregnancy and weight gain. He even told me, "I think you have sleep apnea. Although that doesn't explain your sleepiness in childhood. But, that's what I think you have." He just took one look at my test results and said, "look, you didn't go into REM sleep at all during these naps. Although you do fall asleep on average within 2-3min. No REM sleep means no narcolepsy." Even though it says on the same paper, "patient is currently taking Zoloft which is a known REM suppressant." So that's why they went ahead and diagnosed me with narcolepsy. He also says I don't have it because I don't have cataplexy, sleep paralysis, or hypagognic hallucinations or strong family history even though I told him my mother has sleep paralysis. He asked me questions about how much I sleep, when I wake up and go to bed, if I have the hallucinations or paralysis, etc. Every question he asked me, it was either Yes or No. There was no in between, like he didn't even give me a chance to explain. If I tried, he just waved me off and said, "no. It's okay. I got it." And then he asked me questions about sleep apnea all of which I answered No to like do I snore, do I wake up gasping for air, do I wake up with headaches or sore throats, do I have night sweats. I told him all No, especially about the night sweats. I've been freezing since giving birth. I had my thyroid tested and they said it was normal. My sleep test results also show no indication AT ALL of sleep apnea. My O2 never dropped below 97% the entire night.

He tells me it's sleep apnea brought on by pregnancy and weight gain. My sleepiness has gotten 10X worse in this last month and my daughter sleeps through the night, has been since 7wks. There's no reason for me to be worse than I was when she was a newborn (she's 4 months old now) or when I was pregnant. I seriously doubt his excuse for it being because of weight gain. I'm now 9lbs away from being at my pre-pregnancy weight which is what I was during the sleep study. How can it be worse when I'm losing weight? That makes no sense. He wants me to redo the sleep study, absolutely convinced it's sleep apnea. He did give me 30 days worth of Nuvigil to "tie me over" till the sleep study. It was a horrible experience the first time around. I hardly slept and was worn out at the end of the MSLT. I felt claustrophobic with all those wires and the canula over my face. Not to mention I haven't spent a night away from my baby yet so I'd worry the entire time, keeping myself up listening for her even though she's not there. Also, since we're military, I'll have to call my grandma or in-laws to come take care of the baby since my husband is an MP and works weird hours and days. He doesn't always get weekends off. And all that family is 5hrs away. That was another thing that bothered me about this Dr. I kept trying to explain that no, I didn't want to schedule the sleep test right now. I needed to talk to my husband first since his job doesn't allow him a normal schedule and we would have to make some plans first. He kept saying, "what? He can't spend one night alone with the baby?" No, he can't. He might even be home and he doesn't hear her when she cries and he's asleep.

Should I just go ahead and redo the sleep study? Or should I get a new referral? I really don't want to redo the study. I know what treatment works for me and I'm a fulltime stay at home mom and online student and many of you parents know, there are not enough hours in the day to get everything done. I just really want to resume my meds and move on. I'm not one to take meds if I don't have to and I've considered just letting all this go until my husband is out of the military and we can go back home to NC and I can go back to my old sleep specialist whom I loved. But with my baby getting older and napping less, I'm getting beyond run down. Just yesterday I was trying to do tummy time with her and had a sleep attack and tried to hold off, but I just had to flip her over on her back and lay down on the floor next to her and nap for 2-3min. I could hear her the entire time, but I just had to close my eyes or I felt like I was gonna pass out. I fall asleep rocking her to sleep or feeding her all the time. It really bothers me. Advice anyone? :(

#2 klperkins67

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Posted 06 December 2012 - 10:01 AM

I should add that I'm questioning his ability to understand and treat my narcolepsy too. After reading another post here about choosing the correct Dr, his office is called "Southeast Lung Associates." Is that maybe why he jumped to a Dx of me having sleep apnea depite having no symptoms or my PSG not indicating it? The last Dr I went to was a sleep medicine specialist. I've read before about Drs being in different "camps" where they have a go-to Dx for everyone they see. Seems like this guy is this way perhaps.

#3 DeathRabbit

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Posted 06 December 2012 - 10:27 AM

I should add that I'm questioning his ability to understand and treat my narcolepsy too. After reading another post here about choosing the correct Dr, his office is called "Southeast Lung Associates." Is that maybe why he jumped to a Dx of me having sleep apnea depite having no symptoms or my PSG not indicating it? The last Dr I went to was a sleep medicine specialist. I've read before about Drs being in different "camps" where they have a go-to Dx for everyone they see. Seems like this guy is this way perhaps.


Yep. You have found yourself another sleep quack. They go by the name pulmonologist, and they tend to see sleep apnea anywhere and everywhere when EDS is in the picture. There's no sleep specialty yet in the medical pantheon, so basically anyone can do it on the side I'm finding out. For starters, your doctor should have taken you off of Zoloft two weeks prior to the PSG/MSLT.

#4 DeathRabbit

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Posted 06 December 2012 - 10:30 AM

My N diagnosis was delayed by three years because of a pulmonologist. He gave me a sleep study and was like, well, you didn't really have that many apnea events, but I'm putting you on a cpap because that's all I know how to do.

#5 klperkins67

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Posted 06 December 2012 - 10:44 AM

My N diagnosis was delayed by three years because of a pulmonologist. He gave me a sleep study and was like, well, you didn't really have that many apnea events, but I'm putting you on a cpap because that's all I know how to do.


Exactly! He stonewalled me the moment I walked in the door. He didn't even give me a chance to discuss anything. It was either Yes or No, no chance to explain or elaborate past general description. And he just assumed by me saying No, I didn't have cataplexy that I didn't. He didn't ask me any questions about it to help me rule it out. After reading a post on here, I do think I have it, albeit very subtly and mine seems to be mainly thought processes and communication.

He did tell me he'd put me on Xyrem which I was highly opposed to since I have a 4mo old I need to listen for at night. He just brushed me off saying he'd start me on a super low dose, that I'd still be able to get up if needed. Yeah, and not remember what I did! Or even be awake enough to feed the baby or rock her back to sleep. I don't trust myself on that and I consider that bad parenting IMO. She comes first, always. He didn't seem to understand that even having had kids himself. Of course it's easy for it not to be a big deal to someone who doesn't have a sleep problem. He kept saying he was a Christian doctor and didn't want to Dx me with narcolepsy if he didn't have to since it's a hardcore Dx and "just try getting a job or life insurance policy with narcolepsy!"

I really hope Tricare will give me another referral. Their health care for military families is just God awful, especially here in GA. Oh, and I managed to find him online and he is only Board Certified in Critical Care, nothing else. Not even Pulmonary medicine and definately not sleep medicine. His name is James Daley III in Savannah, GA.

#6 DeathRabbit

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Posted 06 December 2012 - 11:15 AM

Exactly! He stonewalled me the moment I walked in the door. He didn't even give me a chance to discuss anything. It was either Yes or No, no chance to explain or elaborate past general description. And he just assumed by me saying No, I didn't have cataplexy that I didn't. He didn't ask me any questions about it to help me rule it out. After reading a post on here, I do think I have it, albeit very subtly and mine seems to be mainly thought processes and communication.

He did tell me he'd put me on Xyrem which I was highly opposed to since I have a 4mo old I need to listen for at night. He just brushed me off saying he'd start me on a super low dose, that I'd still be able to get up if needed. Yeah, and not remember what I did! Or even be awake enough to feed the baby or rock her back to sleep. I don't trust myself on that and I consider that bad parenting IMO. She comes first, always. He didn't seem to understand that even having had kids himself. Of course it's easy for it not to be a big deal to someone who doesn't have a sleep problem. He kept saying he was a Christian doctor and didn't want to Dx me with narcolepsy if he didn't have to since it's a hardcore Dx and "just try getting a job or life insurance policy with narcolepsy!"

I really hope Tricare will give me another referral. Their health care for military families is just God awful, especially here in GA. Oh, and I managed to find him online and he is only Board Certified in Critical Care, nothing else. Not even Pulmonary medicine and definately not sleep medicine. His name is James Daley III in Savannah, GA.

Xyrem doesn't effect everyone like that. I've just started and at first it actually kept me awake more! I had a good night sleep with it last night, finally, but I still remember waking up to take the second dose, no stumbling or confusion. I'd urge you to consider trying Xyrem at least, as the long term effects of stimulants can lead to bad. If it gorks you too bad, you can always revert back to stimmys only.

#7 Megssosleepy

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Posted 06 December 2012 - 11:54 AM

Xyrem doesn't effect everyone like that. I've just started and at first it actually kept me awake more! I had a good night sleep with it last night, finally, but I still remember waking up to take the second dose, no stumbling or confusion. I'd urge you to consider trying Xyrem at least, as the long term effects of stimulants can lead to bad. If it gorks you too bad, you can always revert back to stimmys only.


If he wont give her a N DX then she cant go on Xyrem... so he is willing to give her the DX if she agrees to Xyrem, but not for Nvig? This guys a loony!

Please try and get yourself a new doc. He knows nothing of N, and his credentials proves it! If Nvig works great for you, that basically says you have N... its not like you are trying to get one of the other stimulants. You really need to see someone who is certified in sleep medicine!

Good Luck!

#8 klperkins67

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Posted 06 December 2012 - 04:21 PM

[quote name='Megssosleepy' date='06 December 2012 - 11:54 AM' timestamp='1354812858' post='21636']
If he wont give her a N DX then she cant go on Xyrem... so he is willing to give her the DX if she agrees to Xyrem, but not for Nvig? This guys a loony!
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Please try and get yourself a new doc. He knows nothing of N, and his credentials proves it! If Nvig works great for you, that basically says you have N... its not like yxexoux are trying to get one xof the other stimulants. You really need to see someone who is certified in sleep xx
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Yes, this is one of the things that bothered me about him. I told him I didn't want Xyrem since I already sleep deeply (or it appears to me that I do) and Xyrem would make it worse and I have my baby to listen for at night. My husband says he doesn't hear her when she cries which is probably true because I have to smack him to get him to wake up sometimes. The man could sleep through nuclear war. And, one day he may go back to working night shift and then I'll be the only one home at night with the baby. Xyrem is not a viable option for me and even though he has children of his own, he doesn't understand that.

I did find an actual neurology specialist clinic (Savannah Neurology Specialists) that is accepted by my insurance. I have to call them tomorrow to get my referral changed and then make an appt. tTey actually have several doctors, one of them a certified PSG tech, etc. Let's cross our fingers they let me go there!

#9 corey91386

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Posted 17 December 2012 - 03:16 PM

I would definitely get another sleep study done. I have had 3 in the past year and a half. I can tell you the doctor makes a big difference. My first doctor was a quack and I was diagnosed with Narcolepsy because I entered REM on 4 of the 5 naps. I got a 2nd opinion, and had another test done off of my antidepressant, and again fell asleep in 4 of the 5 naps entering REM on all of them. I was diagnosed a 2nd time. My 2nd doctor was too far away so I had to switch to a closer sleep doctor. He wanted his own test done. So yet again another test. This one I was back on my Antidepressant. I fell asleep in all 5 naps in around 5 minutes. But no REM. So he can't give a Narcolepsy diagnosis. He said to take the optimistic approach with Idiopathic Hypersomnia and the same treatment as Narcolepsy in the hopes that it could sometime go away unlike Narcolepsy. He said time will tell. All I can say is sleep disorders are not very fun to deal with.

#10 Pkay

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Posted 20 December 2012 - 07:26 PM

if you're on tricare you need to get an appointment with a neurologist and only a neurologist. Psychiatrists and primary care are great for refilling meds and monitoring your health post diagnosis, but they have no business making a determination on anything you're doing. It's not their field of expertise and they generally don't know the ins and outs of narcolepsy.


Narcolepsy isn't a 100% definite every day has the same symptoms condition. Most patients I know, their first MSLT was massively different than their current one because their first one they didn't know what was going on and weren't doing things to help their sleep. So for example, my first MSLT i had 5 naps, asleep withing 3 mins on all 5, REM onset withing 3 mins on all 5. Pretty blatantly obvious narcolepsy. Fast forward 6 years when I've been taking naps when I can, controlling my late night diet, and other things we do to try and help things out and with that MSLT I only had 3 go into REM. That didn't mean that I was any less narcoleptic, I was just better treated and I was having a good day.


Again with tricare I'd see a neurologist ONLY and have them give a referral back to your primary care provider with your meds. If the neurologist is giving you crap ask for another MSLT.