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#1 Athene noctua

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Posted 01 April 2013 - 10:19 PM

Hi there- I'm new new member, so sorry that my first posting is coming in the form of a rant. I'll try to keep it as short as possible, but I have years of pent up frustration here. 

 

I've had problems with EDS for over 10 years now. While in graduate school I fell asleep during every class, while driving to class and when trying to study- despite getting a consistent 8-10 hrs of sleep per night. I thought maybe I had OSA b/c I snore but my health insurance plan didn't cover a sleep study so decided to wait for testing. In the meantime, my inability to function normally started to affect my mood and self-esteem. I was put on an SSRI for anxiety and depression, but started sleeping even more. This was interpreted as worsening depression, so my dosage was increased, but I was still tired all the time- probably more than before. Anyway, I graduated and in 2009 I started a new job/training program so I finally was able to get a sleep study. The whole experience sucked. The sleep tech was really creepy (his eyes opened really big the first time he saw me, and he later made some comment about how I didn't look like how he was expecting me to look). I fell asleep pretty early in the night, but the patient in the room next to me started snoring really loudly and woke me up. Then the tech comes on the speaker in my room and says, "I noticed you were having trouble sleeping, do you need some earplugs?" I know this was an innocent, and even helpful comment, but it freaked me out and I couldn't really fall asleep after that. Anyway, the result of the study was "insomnia"--- which is the opposite of what I went in for. I definitely have an anxiety disorder, which has led to insomnia in high stress situations- it happens maybe six times per year, but this didn't explain why I can sleep 10 hours per night, every night for weeks on end and still fall asleep while working on my computer. So I went in to meet with the sleep doctor who then diagnosed me with Narcolepsy with cataplexy by clinical history. My knees used to buckle when I laughed really hard, but that hadn't happened in several years. He explained that the timing of this symptom going away corresponded with when I started taking SSRIs. He also explained that we couldn't do an MSLT because I was on an SSRI. He prescribed Nuvigil and my daytime functionality improved, although I was still spending a lot my free time sleeping.

 

That's pretty much how things remained until about a year ago. Things have gotten progressively worse, especially over the past 6 months. I've had sleep marathons of 16, 18, or even 20 hrs. I've been late to or even missed work. I've slept through my alarm. Or, woken up when my alarm goes off, get out of bed and head to work- but then I wake up for real and it turns out I was just dreaming about getting out of bed, and have actually missed the first few hours of work. Apparently I fell asleep during sex (while on top) although I have no memory of it- I didn't realized I had stopped. I was brushing my teeth one morning and felt myself falling forward and poked myself in the eye while falling forward. The psychiatrist said I sleeping more because I was depressed and wanted to increase my meds. The sleep doctor tried increasing the Nuvigil, which didn't do anything. I work in the medical field and my symptoms did not make sense to me. I do have wacky, vivid dreams, and nightmares which fits along with other things I mentioned, but the hypersomnia just didn't fit. I started reading about idiopathic hypersomnia and told my psychiatrist that I was beginning to question the narcolepsy diagnosis. Well, she called the sleep doctor and they decided the best plan of action was to take me off all my medications so I could get a repeat sleep study, with MSLT this time. So, over the past 1.5 months I took a partial medical leave of absence and weaned off my meds. On the positive side the extreme hypersomnia has improved since coming off the SSRI. I still sleep more than the average person, but those marathon sessions have not been happening. 

 

I had the sleep study last week and it was a disaster. I was anxious-- I knew that I had difficulty sleeping during the last one and was worried that the same things would happen again. Also, I couldn't stop thinking about how the test results were going to determine my future- whether I have narcolepsy, idopathic insomnia or some pyschiatric disorder-- and how many student loans I have, and how can I pay them back if I can't work. Anyway, the tech kept having problems with the electrodes and kept having to come in the room, pull them out of my hair, and re-attach them. Then she turned the heat on in the room (I live in Los Angeles- heat was not needed) which made it uncomfortably hot. I knew I was having trouble sleeping, which made me more anxious. I asked if I could get out of the bed and sit in the other room until I felt sleepy again- she said no. I tried to play solitaire on my iphone (in airplane mode) which is what I usually do to wind down before going to bed, but she came in the room and told me the phone was interfering with the computer read out so I needed to put it away. I finally fell asleep sometime after 5 am. When she woke me up later I expected her to tell me they didn't record enough sleep to do the MSLT, but she said they were going to do it anyway. Here's the kicker--------> At one point during the MSLT two of the employees in the office were fighting pretty loudly, and I could hear the tech talking to someone on her cell phone. Just before nap number four someone started doing CONSTRUCTION on one of the other suites in the building. The hammering and sawing was so loud that I could feel the vibrations. The construction continued until after I left. Then during nap number five some man dressed in a suit actually WALKED INTO the room I was supposed to be napping in. This was not a hallucination, it really happened. I was later told that this was the owner of the center, and they don't know why he walked in there while I was trying to sleep.

 

I emailed my doctor as soon as I got home from the study- I told him I didn't think I got enough overnight sleep for the MSLT to be valid, and that naps four and five were interrupted by both construction and some random guy in a suit. He said to wait for the results.

 

I got my results today: 1. She was given five opportunity taking naps two hours apart. She slept during all five naps. 2. Since the last nap was interrupted due to environmental noise, I did not count the last nap. 3. Average sleep latency was 6 minutes which is short. 4. She achieved REM stage of sleep during second and third naps. 5.  This study supports the idea of Narcolepsy while since nocturnal sleep was less than six hours, this MSLT result should be regarded with caution.

 

I asked him why they counted nap number four considering all the construction. He said they counted it because I fell asleep. Yes, I fell asleep with a sleep latency of 0.8 minutes, but I didn't stay asleep because the hammering woke me up. How can you use that to assess SOREMPs? 

 

Anyway, he recommended staying off the SSRIs if can, and continuing the Nuvigil. Then he tells me that he got his dream job (a new job working for an insurance company) and isn't going to see patient's anymore. 

 

So basically I'm no closer to clarification than I was 2 months ago; except now I've used up my sick leave will have to pay $300 out-of-pocket for a poorly performed sleep study, and am expected back at work on a normal schedule. I don't know what to do, or where to go for help now. I just feel so defeated and hopeless about the whole process.

 

grrrrr....... 

 

 



#2 sk8aplexy

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Posted 02 April 2013 - 10:49 AM

Hello.

It is a nasty path and unfortunately, your story sounds very common.

I can not tell you that you have or do not have the condition/matter.

But, being misdiagnosed or led in directions which may not exactly be fitting, or at least fitting to the underlying condition/matter, is too common (IMO).

 

A couple of things to know and/or recognize; there is no 100% test for Narcolepsy or Narcolepsy with Cataplexy, although clear cut Cataplexy (which is basically collapsing from laughter, to a temporary paralysis, and remaining conscious or actually falling deep into sleep) seems to be unique to Narcolepsy and especially when the other 3, of 4, tetrad symptoms are there (which you basically describe in some extent regarding the dreams, the tiredness, the other being sleep paralysis). 

For some with Cataplexy, a spinal tap is taking to measure the amount of hypocretin/orexin, as it is often very minimal or gone in those with Cataplexy.

-Orexin or Hypocretin is the same neurotransmitter (discovered by 2 different groups/persons, at the same time) and is unique to the brains hypothalamus, the nuerotransmitter regulates so much including the sleep/wake cycle (there's a lot on this site, browse in whichever direction for more...)-

Also, there really, at this point in time, is no 'cure' and are only 'symptom' relief available; and such does not work for everyone (I've had no success down that road). 

Try to learn as much as you can regarding the condition, and do not expect to find that whichever sleep doc actually knows a lot about the condition, as very often there is a sort of clumsiness and disregard for it (at least this is what I've experienced, yet I have gone far out of my way and spoken to a couple who know a lot, who actually basically just reconfirm and/or second what I seem to know about it from spending a lot of time reading and experiencing it...).

 

For myself, 'lifestyle adjustments' have brought me much benefit yet there are still constant matters: especially food and/or eating well (cooking what I eat, knowing what I eat, avoiding things that cause me troubles like certain sorts of refined sugars, salts and flours, etc...), sleep routine (trying to maintain a more or less common schedule) and sleep hygiene (dark, comfort, quiet, sleep when needed, nap if needed), both recognition with understanding of the condition (what/why/how come it is occurring) and paying close attention to so much (yourself), and perhaps one of the biggest things [at least for me] is avoiding stress (it is tough)...

 

Lastly, I'll just say, anxiety and depression for myself seem quite familiar and common. 

It seems to be a common and typical part of the experience, the misunderstanding/s and simply the difficulty of living with the condition; yet there are ways to overcome.

Knowing, having close by, good people who care is huge, as is (again) lifestyle...

 

Hopefully, what I've said does not ring too heavy, please know the intent is only to be helpful.

And, Please don't take what I'm saying with too much weight.

The best of luck, be careful and be conscious.



#3 DeathRabbit

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Posted 02 April 2013 - 11:02 AM

Wow, that's a nice kick in the you know what. "I got my dream job, so good luck with that whole narcolepsy/IH thing." That doctor seems like kind of a jackass. I had trouble sleeping in my first couple of sleep studies as well, and even during my last one which resulted in my N diagnosis, only got like 6.5 hrs of sleep which is way less than I normally get. Sleep studies are kind of flawed by design, because if you take anyone and hook them up with a million electrodes and then go "READY, SET, SLEEP" they're not gonna get the best night's rest. One thing I might recommend, actually, is to get less sleep. Past a certain point, it's detrimental, no matter how good it may feel to stay in bed. I know it can be really, really hard to get started i nthe morning, but I've noticed my optimal sleep time os between 8.5-9 hrs. Even though my body tells me I need more, if I sleep past the 9 hr mark, I almost always feel worse.



#4 dormir

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Posted 02 April 2013 - 09:55 PM

Wow, I didn't have quiet as dramatic as PSG or MSLT experience, but I had the electrodes falling off repeatedly, noisy MSLT environment, and a doctor that seems kind of text book narcolepsy and indifferent.  I just wrote about the follow up I had yesterday and I am very confused/frustrated today.  I have vivid dreaming, SP, and HH on a consistent basis, but my PSG and MSLT were not consistent with traditional narcolepsy cases.  :(

 

 

Anyway, I hope this doctor leaving is the best thing that ever happens to you because this way you will hopefully fall into the arms of the best doctor to treat you (falling not due to cataplexy hopefully).  They say the third time's a charm.  Let's hope so because chronic sleep issues are horrendous.  



#5 ckobb1

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Posted 02 April 2013 - 10:52 PM

I am a sophmore in high school, and I was actually diagnosed about 3 months ago with narcolepsy. After I failed all of my midterms because I slept through them, my parents decided to get me into a sleep study. Luckily for me, my aunt works at the sleep study clinic, and we got in 4 days after my psychologist suggested I be tested. I was lucky enough to have the connections I did, and my study was completed on a weekend day when the clinic was closed so I was the only patient at the time. 

I understand how unnerving it can be when you are attempting to sleep and are being woken up, because my nose kept bleeding and screwing with the breathing equipment, so the nurse had to repeatedly wake me up to refit it. Despite this, I managed to sleep relatively well, despite a severe lack of REM sleep I'll address momentarily. 

During the nap study, I slept through all of the naps, and still felt tired. 

Like you, I have many times dreamt that I got out of bed and began to get ready. Apart from having someone to pull you out of bed (which my Dad does if I get within 10 minutes of the bus arriving) there isn't much that you can do. However, I have sometimes been in such a sleep-like state that I assume my being awoken was a dream and I fall back to sleep. I tend to forget even being woken up. Many times, I have thrown objects at my parents and screamed at them (my mother actually videoed one instance) and forgotten that it ever happened. As mentioned, if you are too tired upon waking up, it cannot be helped.

 

Like you, I haven't experienced many muscular issues in emotional instances, however, I do get extremely tired when annoyed (when I am being lectured for something stupid for example) and occasionally fall asleep during these lectures.

 

Looking at what you describe, I feel like we may have similar REM sleep issues. I found that although I could sleep for about 18 hours a day, I still felt tired and only stayed awake because I was starving. My doctor prescribed xyrem for me, and I have to say, once I found the right dosage, it sends me into a deep sleep and I awake feeling extremely rested. Not that this is good, but when my dosage was too high, I would be in such a deep sleep that I would vomit it out without waking up. If you have not yet attempted anything similar, I recommend mentioning it to your doctor, because it really works once you reach your perfect amount. Keep in mind though, if the dosage is not high enough or too high it won't work right, so it may be a few tries before you reach a good amount. Also, it tastes like salt water mixed with what lead smells like it would taste, so ask your doctor if you can use water flavorings, because otherwise you'll suffer. 

 

I apologize if this was too long, I just want you to know that I empathize with your situation. I know that before I found my treatments, my family was extremely frustrated, especially as my sister (a freshman in high school) suffers from severe depression and they assumed I was being secretive about mine and that I had given up on school. I was lucky to have the connections I did, so I hope that I helped you out a bit because you don't have those connections.

 

Good luck and I hope you can be happy eventually.

 

P.S. I have no experience in the sex aspects of your story, but I fell asleep while killing some noobs in COD, so I get where you're coming from. I've also fallen asleep while taking a shower, which was a very awkward experience the next day when my sister found me when she started getting ready for school.

 

P.P.S. I take 2 doses of adderall to stay awake throughout the day as well as xyrem twice throughout the night to sleep deeply.



#6 Athene noctua

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Posted 02 April 2013 - 11:12 PM

First, thank you for the replies and words of encouragement. I mostly really needed to vent so thank you for giving me the opportunity to do that. Now that I'm done with that, I feel so stuck. I can't decide what to do next. It's hard to decide what direction to go when I don't know what I'm dealing with.

 

With my situation being where it is (that I'm in danger of losing my job), I don't want to give to much personal information but I have a very strong clinical and basic science background. I feel like I understand the criteria for diagnosis as well the research studies I've read. So no worries about scaring me with details; my head has already gone to worst case scenario territory.

 

When I first started to question the narcolepsy diagnosis I was just hoping they would order the HLA testing. I know it isn't positive in 100% of people, but I felt like a positive result coupled with my constellation of symptoms would be enough to convince me that the diagnosis is accurate. 

 

I guess I'm just looking for some concrete evidence suggesting that this is not just some sort of psychosomatic manifestation (as I was told the first 5 years of this). Or if it is, then I guess I'd like to know so that I can start working on doing whatever I need to do to get better. I really wanted to avoid the CSF studies because although it can diagnose narcolepsy or idiopathic hypersomnia, you can't do anything else with the information after diagnosis. As one of you mentioned, there's no cure, and the drug companies don't seem too interested in investing in therapeutics. 

 

I think my next step should be finding a new doctor who can listen to my history, interpret the data in context and answer my questions, but where do I find him/her?



#7 Athene noctua

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Posted 02 April 2013 - 11:25 PM

For myself, 'lifestyle adjustments' have brought me much benefit yet there are still constant matters: especially food and/or eating well (cooking what I eat, knowing what I eat, avoiding things that cause me troubles like certain sorts of refined sugars, salts and flours, etc...), sleep routine (trying to maintain a more or less common schedule) and sleep hygiene (dark, comfort, quiet, sleep when needed, nap if needed), both recognition with understanding of the condition (what/why/how come it is occurring) and paying close attention to so much (yourself), and perhaps one of the biggest things [at least for me] is avoiding stress (it is tough)...

 

Lastly, I'll just say, anxiety and depression for myself seem quite familiar and common. 

It seems to be a common and typical part of the experience, the misunderstanding/s and simply the difficulty of living with the condition; yet there are ways to overcome.

Knowing, having close by, good people who care is huge, as is (again) lifestyle...

 

Hopefully, what I've said does not ring too heavy, please know the intent is only to be helpful.

And, Please don't take what I'm saying with too much weight.

The best of luck, be careful and be conscious.

Thank you. Don't worry about giving it to me straight, I appreciate all the advice you gave.

 

Wow, that's a nice kick in the you know what. "I got my dream job, so good luck with that whole narcolepsy/IH thing." That doctor seems like kind of a jackass. I had trouble sleeping in my first couple of sleep studies as well, and even during my last one which resulted in my N diagnosis, only got like 6.5 hrs of sleep which is way less than I normally get. Sleep studies are kind of flawed by design, because if you take anyone and hook them up with a million electrodes and then go "READY, SET, SLEEP" they're not gonna get the best night's rest. One thing I might recommend, actually, is to get less sleep. Past a certain point, it's detrimental, no matter how good it may feel to stay in bed. I know it can be really, really hard to get started i nthe morning, but I've noticed my optimal sleep time os between 8.5-9 hrs. Even though my body tells me I need more, if I sleep past the 9 hr mark, I almost always feel worse.

Exactly! You totally get it. 

 

Wow, I didn't have quiet as dramatic as PSG or MSLT experience, but I had the electrodes falling off repeatedly, noisy MSLT environment, and a doctor that seems kind of text book narcolepsy and indifferent.  I just wrote about the follow up I had yesterday and I am very confused/frustrated today.  I have vivid dreaming, SP, and HH on a consistent basis, but my PSG and MSLT were not consistent with traditional narcolepsy cases.   :(

 

 

Anyway, I hope this doctor leaving is the best thing that ever happens to you because this way you will hopefully fall into the arms of the best doctor to treat you (falling not due to cataplexy hopefully).  They say the third time's a charm.  Let's hope so because chronic sleep issues are horrendous.  

Thanks for your reply. I'm sorry that you are also having a frustrating experience. I hope everything works out. 

 

I am a sophmore in high school, and I was actually diagnosed about 3 months ago with narcolepsy. After I failed all of my midterms because I slept through them, my parents decided to get me into a sleep study. Luckily for me, my aunt works at the sleep study clinic, and we got in 4 days after my psychologist suggested I be tested. I was lucky enough to have the connections I did, and my study was completed on a weekend day when the clinic was closed so I was the only patient at the time. 

I understand how unnerving it can be when you are attempting to sleep and are being woken up, because my nose kept bleeding and screwing with the breathing equipment, so the nurse had to repeatedly wake me up to refit it. Despite this, I managed to sleep relatively well, despite a severe lack of REM sleep I'll address momentarily. 

During the nap study, I slept through all of the naps, and still felt tired. 

Like you, I have many times dreamt that I got out of bed and began to get ready. Apart from having someone to pull you out of bed (which my Dad does if I get within 10 minutes of the bus arriving) there isn't much that you can do. However, I have sometimes been in such a sleep-like state that I assume my being awoken was a dream and I fall back to sleep. I tend to forget even being woken up. Many times, I have thrown objects at my parents and screamed at them (my mother actually videoed one instance) and forgotten that it ever happened. As mentioned, if you are too tired upon waking up, it cannot be helped.

 

Looking at what you describe, I feel like we may have similar REM sleep issues. I found that although I could sleep for about 18 hours a day, I still felt tired and only stayed awake because I was starving. My doctor prescribed xyrem for me, and I have to say, once I found the right dosage, it sends me into a deep sleep and I awake feeling extremely rested. Not that this is good, but when my dosage was too high, I would be in such a deep sleep that I would vomit it out without waking up. If you have not yet attempted anything similar, I recommend mentioning it to your doctor, because it really works once you reach your perfect amount. Keep in mind though, if the dosage is not high enough or too high it won't work right, so it may be a few tries before you reach a good amount. Also, it tastes like salt water mixed with what lead smells like it would taste, so ask your doctor if you can use water flavorings, because otherwise you'll suffer. 

 

I apologize if this was too long, I just want you to know that I empathize with your situation. I know that before I found my treatments, my family was extremely frustrated, especially as my sister (a freshman in high school) suffers from severe depression and they assumed I was being secretive about mine and that I had given up on school. I was lucky to have the connections I did, so I hope that I helped you out a bit because you don't have those connections.

Your response definitely wasn't too long. You shouldn't ever feel the need to apologize when you're trying to be helpful. It sucks to deal with a chronic medical issue at such a young age, but it sounds like you are handling everything much better than this old lady. Thanks for the advice about Xyrem, I will be sure to mention it if it's ever prescribed to me. 



#8 Beth1221

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Posted 21 April 2013 - 11:49 AM

I just wanted to say don't let doctors keep you from getting the care you need. I was diagnosed in 2011 and stayed with a doctor until very recently who was apathetic and dismissive of my concerns. I was sent to be tested after my migraine neurologist thought I was abnormally sleepy during the day. She thought I had sleep apnea, but results showed N instead. My then N doctor started me on nuvigil without letting me know it would conflict with my birth control. Then even after months of being on adderrol and lunesta without seeing improvements to my trouble sleeping, all they wanted to do was more of the same sedatives. I finally had enough of them not listening to me and asked my neurologist if she knew of someone else. My new doctor instantly listened to all my concerns and prescribed xyrem while warning me of the type of medication it was and what I could expect from it. It's still early but I can already tell you that I am getting better sleep. For the first time in a long time I've begun to feel some hope because I had a doctor supply an option that not only is helping with my N but also reduce my migraines. I no longer feel like I either have to be asleep or suffer from the pain of severe migraines. It makes me hate that I wasted almost two years of my life with that previous doctor.

Whoever your new doctor is, if you don't like them or don't feel that they have your best interest at heart, it's okay to up and change. I didn't mention this but my first N doctor was in the same office as my neurologist. And I even asked for her advice. It's your health and your happiness and you have the right to take control of it. You won't ever be satisfied unless you can trust your doctor. I wasn't even sure I could trust my diagnosis until now.

I know that's just a small piece of advice, but I hope it helps.

#9 Starbuck

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Posted 22 April 2013 - 07:09 PM

I'm so sorry you've gone through this. I bumped up another persons thread in this forum called "7 things I did before I got my diagnosis" in hopes that it might give someone like you hope and ways to be proactive as you wait for an accurate diagnosis.

#10 doinmdarndest

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Posted 23 April 2013 - 02:33 AM

if the nuvigil isn't keeping you wakeful, get your rx'er to start adderall, an amphetamine. T1/2=10 hours.   most often the next tx option md's rx is methlyn, a short acting amphetamine. T1/2 =3 1/2 hours.  the former's longer action makes it more conducive to full-time emloyment, if it's getting a response.  you might need a new rx'er.