<p>ee33ee, the health industry and a series of misdirections, poorly derived logic and casual diagnoses and general lack of holistic patient care effort, the lack of follow through and rare careful consideration of differential diagnostic procedures…is indeed very discouraging and anyone can understand that you feel jaded and concerned about giving over your ability to make judgments to any physician with enthusiasm and trust. It is a bummer indeed to have a disorder…that is still so vaguely explained and you are right to continue on the hunt for more information and better problem definition. The state of the sleep impairment industry seems to me to be awfully good at gathering data, but limited in responses that can treat, and cures are seldom mentioned. That is why I hope that provigil DOES help you if not cure you, until they create another drug with even more potential. You are not a middle aged man and your sleep disorder is not likely to have the same cause as my husband’s who I mentioned had an odd/delayed trajectory in learning to walk and balance, too. (Something else not clear enough to garner a diagnosis was off about his neurological system. Actually, when I saw his gait in college 30 years ago, I thought he was joking around.)<br>
The good news is not only is he on a Plateau without signs of any worsening of his sleep disorder for a significant time, but he sometimes is quite normal up to what any person with a full time job would call “bedtime.” Things are not cured or perfect. He can’t converse at parties past ten very well, but he can take an extra half dose if he must be up till midnight and then he is just as bright as the rest of the day.<br>
I have a son at college who will be a senior, and even after his destruction of his sleep cycles with mono and a freshman social life and texting and facebook and the thrill of 30 best new friends on his hall…even after he matured enough to respect sleep again…he is up nightly still at least 1am…so I know it is odd in college to go to bed early. But when you are employed, you may find you can figure out a schedule for sleep and work that makes sense for you.</p>
<p>If something happens to me in the middle of the night…good luck…he won’t respond well because he is still impaired, not cured and there is no provigil in his system after about 9pm actually. He shouldn’t drive after 9-10 in my opinion. We seldom drink…even socially now because alcohol impedes normal sleep cycles and so…welcome to non alcoholic fake beers and club soda. It is a good thing he married a night person. But he is a great morning person (I’m not!) and highly productive again.
You were so smart to make sure you got to a real sleep disorder clinic. It must be a relief in some respects to be past the other reasons they were “thinking” you were fatigued. Since you are near to good medical talent now…I wouldn’t be surprised if you are on the cutting edge of new approaches in the near future…if so and you get a wind of something good in this field…try to remember my screen name and give me a heads up down the road? I would thank you for that…</p>
<p>OP ; Do you know if this is considered “off-label” use of this medicine? If it’s not FDA proved for a “borderline” condition, do you know why? (BTW off-label use of medication is safe and common, especially by specialists, but it’s also illegal and common for drug companies to encourage it .)</p>
<p>The only approved indication for Provigil is narcolepsy. I didn’t find any off-label indications. I do know soldiers do use it to keep awake.
It is very expensive to get a FDA indication. If the drug is getting near its patent expiration, the company will not go through with the process.</p>
<p>OP - I think you should go ahead and at least try Provigil, just so you can know how it works for you. If you start feeling like a different person or something crazy like that, or personality changes, or anything you can’t live with, you can stop taking it.
However, I do understand what you mean when you don’t want to become “dependent” on any kind of drug, even caffeine. For a few years now I’ve gotten used to having a morning cup of hot tea [caffeinated, of course, to get my day started], and now if I ever skip the tea I’ll have a terrible headache all day long… bleh.</p>
<p>Wow faline, your description of your husband really indicates that he has a distinct need for the drugs, especially if he doesn’t even <em>respond</em> after 10 o’clock and can’t drive at night. Has he completed a legitimate sleep study? It sounds like he has bona fide narcolepsy if he seems to completely bypass portions of your evening conversations.</p>
<p>I just wanted to clarify that I’m a borderline case, which makes me all the more uneasy. I can definitely pass along as a functional person, even normal by most standards. I operate in an energetically depressed state all the time, but I can’t say that I’ve ever completely lost control of my mental processes in an inappropriate moment - it always consists of "almost"s and "barely"s for me. I can’t say that I’ve unknowingly ignored someone’s words like your husband, but it’s tiring for me to make conversation beyond the low-key. I can’t say that it’s been truly hazardous for me to be behind the wheel, but I’m nearly always in a semi-wakeful zone that could be described as auto-drive. I can’t say that my disorder has prevented me from participating in strenuous activity like running or weightlifting, but I’m often in a daze even during sports. I seem like a very thoughtful person, but I’m very often zoning out and my thinking is sluggish. I can respond to everyday stimuli to a reasonable degree, but many people have accused me of being high or having a hangover.</p>
<p>Is hypersomnia just a word for someone who is low in energy, and is my diagnosis just the coincidental descendant of arbitrary definitions? To preempt those who will scoff, just keep in mind that I’ve been this way as far as my memory of my internal state extends (which is not far, because I’m a very instinctual person and self-awareness is new to me), so I may be exaggerating or understating things from a lack of perspective. Oh and those are rhetorical questions, I guess.</p>
<p>Yeah I’m just musing before August 6, when my sleep doctor gets back. Faline I will keep you in mind, despite how unlikely I think your predictions are.</p>
<p>ee
As a physician, I would suggest a second opinion. I would also recommend going somewhere like Children’s Hosp of Phil or Hopkins or the Mayo for it. </p>
<p>As others have suggested, your symptoms are also the most common sxs of depression.</p>
<p>yeah…my husband does not “sound” like you much at all… But I was hoping you would find a positive two year hx with provigil without jitters, or other side affects from anyone to be of interest. He has had two complete overnight work ups in a sleep clinic and fairly complete testing on his heart and other systems. There are tests that have not been run yet…that I am aware of would be a next look…The clinic is not of the caliber of those near your part of the USA. If my husband loses this improvement, will not hesitate to take him to Duke or Hopkins, but we have accepted that there is no easy answer and he has 14 hours a day or so “back”…he also remember uses a machine and has serious apnea…but it appears to be central…not blockage based apnea…no easy switch to turn for that. he is very compliant on his machine and many of his odd behaviors/inability to keep up ended and he was restored with the machine at night and provigil during work hours. </p>
<p>good luck, my dear, in sorting this out…be patient…you are worth it. Keep an open mind and the second opinion is always good advice, and make sure all “systems” were examined…</p>
<p>I would have to say sadness and loss of interest in previouslly pleasurable activities are the most common ( or maybe “specific”) symptoms of depression. Concerns about energy, sleep, and motivation may be the most difficult to remedy, and may seem fairly ubiquitous across specialties, I don’t know. I mention the “off label use” of prescrition medications because it is interesting to think about the role of the pharmaceutical industry in the evolution of “borderline” conditions, and “spectrum” disorders".</p>
<p>princess’dad: Thanks for the recommendation. I actually considered going to the CHOP for a second opinion but I figured the sleep study (multiple latency test) is so transparent and standardized that I could have performed it myself. There’s nothing new they can do, and the only difference could be whether they recommend pills for me, which is completely subjective.</p>
<p>Faline: So he has never had daytime nap tests done? I would be curious about his average sleep latency. Mine is 6.5 minutes. I don’t know what special clinic you’re talking about, but I had my tests done at a fairly small place in a local town, not CHOP or mayo.</p>
<p>Shrinkrap: Thanks for understanding some of my deepest concerns about the capriciousness of my diagnosis.</p>
<p>One of my first questions for the sleep doc was whether depression could play a role. She said that no, depression would make me feel like I want to fall asleep, in short amounts of time, throughout the day but it wouldn’t actually allow me to fall asleep, in short amounts of time, throughout the day.</p>
<p>^^^ but the sticky question is, which came first the chicken or the egg?</p>
<p>If one experienced the physical symptoms that the OP does (lack of energy, etc.), as long as he has, they could easily develop symptoms of depression. Who wouldn’t be depressed if their energy levels were so depleted?</p>
<p>^^^it’s worth asking. For reasons that I do not understand, these simple tests (more than one: I recall TSH, T3, but not the other) are often overlooked.</p>
<p>i just asked spouse…he said his daytime latency was in the five minute range…for him, the provigil is the “easy” think to accept…the apnea machine adds new “dimensions” to say…camping, visiting our son in Europe, traveling for 20 hours on an airplane when you know you are “no good” after 14-16 hours max (I now break up his flights with an overnight stay in a hotel…having a plane cancel and realizing you didn’t bring your machine and are going to an airport hotel where you will wake up many times an hour with apnea…at this point…the machine and provigil become the beloved friends, and the acceptance of the need for them is behind us…along with other indignities of our age.
It took us a while before we realized how hard he was trying to stay on top despite the non restorative sleep…years in fact before he went to a clinic.</p>