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Baffled neurologists

In March 2007, I was taken off active duty in the United States Navy after being diagnosed with multiple sleep disorders. I am a 21 year old male serving on limited duty at the present time. After 2 polysomnograms and a MSLT, my doctors diagnosed me with mild OSA, Delayed Sleep Phase Syndrome, Chronic Insomnia, Narcolepsy without Cataplexy, Excessive Daytime Hypersomnolence, and Restless Legs Syndrome. Among these issues, I seem to have an atypical response that they have not even been able to give a formal diagnosis for. At various times when i am able to fall asleep, I have "episodes" of active living with states of amnesia like symptoms. Basically, I am "awake" as far as anyone can tell. My wife, my mom, my friends, etc are unaware when I am having an attack, however, unlike sleepwalking, all of my motor skills and cognitive functions are fully in tact. I will smoke a cigarette, hold conversations, get dressed, turn my 7 alarm clocks off and lay back down in bet. You name, I have probably done it with one major exception, I do not give myself the opportunity to drive. I have my wife hide the car keys in a different location every night so that "I" cannot find them and perhaps drive while asleep. As I said, I have 7 alarm clocks throughout my bedroom. I have 4 old fashioned ringing bell alarm clocks, 1 digital alarm clock, and 2 cell phones (one only has a single alarm while the other has 2).  As far as treatments have gone, I have undergone bright light therapy for the last 7 months of my limited duty, chronotherapy, Mirapex treatment,Melatonin treatment, last 2 months on a CPAP machine, and I am currently on a Provigil regiment. The CPAP and the Provigil are the only items to have any noticeable improvement, while that improvement is very slight. I am able to control most of my fits of narcolepsy with the Provigil, they still happen. As well as these disorders, I am also eating enough healthy food to feed 3 average adult males (as per words my dietician used) which makes her exceptionally worried, since I have gained 47lbs in the last 8 months. My PCM ran a thyroid panel, 2 blood sugar panels and a metabolism panel on me, however the only thing abnormal was my 232 cholesterol. My body temperature stays within normal band, whoever, since the onset of my sleep disorders approximately 2 years ago, I have had an unwaiverable "heat flash". What I mean by that is, I always feel hot, regardless of the temperature surrounding me. A running joke in my household is "if it starts feeling good to me, its too cold for my family" which is when I turn the AC back up. I have presented these symptoms ot my PCM and neruologists numerous times just to be gaffed off. I have been turned down twice now for endocrinology referrals to test my ghrelin and leptin levels to see if they may be playing a part due to my sleep deprivation in my change in eating habits. I have asked for CAT scans and MRIs to be done due to part of my research has come across the hypothalmus. I am unsure if this is even a correct path of possiblity but not having any medical knowledge of my own, my research and findings are sort of limited to the basic human physiology and anatomy I have come across on my own. I am extremely worried about my own health as are the rest of the members of my family. Anyone thoughts, suggestions, information, contact numbers for medical professionals who may be of some help would be greatly appreciated. I am at my wits end trying to find some sort of resolution for my medical issues and the fight itself is tearing me down.
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Avatar universal
How are you doing now? I hope you've had some resolution to your sleep issues. Sleep specialists should pay to study you. I have hypersomnia with long sleep time (as opposed to narcolepsy without cataplexy, because I don't start to dream right away), and dsps. I get into bed at 10 pm and don't get up until after noon. I am doing bright light therapy now, but so far it hasn't helped.  I'm curious- did you use light therapy after your core body temperature minimum? That is CRUCIAL for the treatment to have any chance of working.  I really hope your sleep walking, for the lack of a better term, is under control.

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Avatar universal
I forgot to add, I would consider dropping your psychiatrist and see a psychologist instead.  Basically, you go to a surgeon, he will cut you, you go to a psychiatrist, he will prescribe you medication.
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Avatar universal
You will find psych meds in general, like Prozac will increase your appetite and cause you to gain more weight.  I am not an advocate of psych meds.  IMO, they are the equivalent of a chemical lobotomy.  Why you are on prozac makes no sense to me.  However, this is what doctors love to do with sleep apnea patients, they prescribe psychiatric medication and don't tell their patients about all their side effects they have and how terribly difficult it is for most people to get off of them. I suggest you google prozac and their side effects and what other people's experience are with it.  Many say that if they knew now what they knew then (before starting the meds) they would never have started.  Quiting or getting off of them is very difficult. In fact, many people go back on them because the withdrawl effects are nasty.  

If you need to eat every 3  hours then, like your nutritionist likely told you, break up your three meals a day into smaller portions and eat more frequently.  Not an easy task but it can be done.  You may be physically fit but you can still be overweight. A lot of football players have sleep apnea.

It sounds like you have insomnia now.  I would suggest you go on medical leave until your sleeping cycle improves. The psych meds are not the answer. They [at best] treat only the symptom and not the problem.  They don't cure anything.
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Avatar universal
I have been being seen by Navy nutritionists and they say what I eat is perfectly healthy, however my quantities are equivalent to that os 3 average males. This increase in appetitie just started about 8 months ago. If I do not eat every 3 hours or so, I get physically ill, with my stomach balling into a knot and me curling over holding my stomach. I am trying to be seen by an endocrinologist to be tested for high ghrelin levels due to my extensive sleep deprivation. Being in the Navy, I adhere to a very strict cardiovascular excerise plan 4-5 times a week, pending holidays weeks and whatnot. I am physically fit, both by Navy standards and Cardiology standards, since I had a stress test done to check my heart's status. Yesterday, I was put on Prozac by my psychiatrist, which hopefully works some sort of wonders to do something, but yet again my sleep does take its toll on everything. As far as getting better sleep, I am unable to due to my DSPS not allowing me to fall asleep before 2-3am and having to wake up for work at 6am. I have changed all my old habits from my past, such as no TV in the bedroom, the bed and bedroom are for sleep only, I sleep without any lights or sound moving. Things of that nature yet to no avail in providing some sort of positive impact on my sleep condition.
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Avatar universal
Lots of information you have provided. CPAP therapy takes a long time, sometimes a year or more to see the benefits.

If after a year, you have no improvement, you probably should be referred to a sleep disorders clinic in Standford, Beth Israel in Boston, or the Mayo Clinic. If the doctor's prescribed you psychiatric medication and prescription sleeping aids, these all may affect your body and  mind even though most if not all, will tell you otherwise.  A lot of your issues can be resolved with better sleep.  I don't like the fact you are on meds to keep you awake (Provigil). You're body is telling you that you need rest and you're fighting what it's telling you.

Try to practice good sleep hygiene and lower your body fat index by going  on a diet, enroll in a cardio exercise program,  and reduce the amount of meat you eat.   Good luck.

Sam

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149081 tn?1242397832
WOW  - what an extensive list of sleeping disorders!!!  I wish I could be of help but my knowledge is quite limited. I would recommend you visit the site -  apneasupport.org     they have user forums as well and may be able to help.

best of luck
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