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About TheDreamer

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  • Birthday 10/28/1968

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    Manhattan, KS
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    Computers, Photography, Home Theatre Tech, Amateur Radio, Doctor Who, Volunteering, Engineering

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  1. It was only about 4.5 years from first sleep study to Narcolepsy Diagnosis....but there were 11 years between having the sleep attack while doing 75 Mph (the limit was 70, but the general flow was 75)....which is where I decided there was something wrong with me. I had for years complained of EDS and sleep attacks to doctors...but my first PSG was prompted by scoring a hypertension stage 1 in an office health screening. (which at first my primary was going to dismiss as the screening using a standard cuff rather than a large cuff + white coat syndrome. But, out of the blue wanted a sleep study, which was the last thing I thought I needed.....) Oh, I had had experience a significant unexplained weight gain the year before. I have now returned to close to my weight before that unexplained weight gain.... The Dreamer.
  2. I had stumbled across a medical definition site once....and for hypersomnia it said "excessive daytime sleepiness". And, I had already heard that idiopathic means "the doctor is an idiot and can't figure what is causing X" (Dr. Rye at NN 2010), where X in this case is EDS. So, ya...IH is totally not a diagnosis.... Which is strange, because I had a doc that made that diagnosis...and various amphetamines and/or provigil......though he's also confirmed I have peripherial neuropathy, but being unable to determine cause won't treat it and told me that there's no reason to see him about it anymore unless I get a diagnosis from somebody. Hopefully my new doc will figure something out about the the neuropathy.... The Dreamer.
  3. I have sometimes wondered if the fact that I broke my foot a 3 weeks before my MSLT, affected my MSLT results.....though the fact that they didn't tell me to discontinue any medication prior to the MSLT and I had heard that some of the ones I was one can effect the MSLT outcome, though none that my doctors would admit to. Plus, i was actually getting the best sleep I ever had in my life....the week before the MSLT to a couple weeks after the if my broken foot had signaled that I needed to sleep great for a while....I was also having less trouble with EDS pretty much immediately after I broke it to about when my sleep got bad again. I had broken it by walking into a first aid box that was laying on the floor/wedged into corner next to the coffeemaker.... The Dreamer.
  4. I didn't really fit the that i had one MSLT....first doc said it was negative....second doc said there were traces of REM in naps 3 & 4 suggesting Narcolepsy, but I don't have Narcolepsy....finally third doc said it correlates with his other findings for a diagnosis of Narcolepsy. The PSG/MSLT had said in a couple places "suggestive of Narcolepsy, clinical correlation recommended/suggested"....but the conclusion was negative. second doc was only interested in objective tests. I had gotten the blood test before my MSLT (at an NN conference), but the result didn't come until after....and there are plenty of disclaimers that being positive for DQB1*0602 doesn't mean you have Narcolepsy....(and some that being negative doesn't rule it out....) I had a positive blood test result. The Dreamer.
  5. There can be times where Cataplexy gets worse and other times where it lessens. It could be that your cataplexy was so mild that it wasn't noticeable before, but has now changed to where it is. For me, after learning about Cataplexy (from my first NN conference), I had started to identify things that had happened in my past that might have been mild cataplexy. I was also told that I exhibited mild Cataplexy at the conference, though I didn't feel like I had. And, I now recall how I would trip for no apparent reason occasionally while walking with co-workers. (when I had asked my Neurologist if I had cataplexy, he asked if when I'm with a group of friends and I hear a really good joke, do I fall to the ground... from that he ruled I don't have Cataplexy......he's the same Neurologist that had said my MSLT showed some SOREM for naps 3 and 5 supporting a diagnosis of Narcolepsy...but in every visit after that he would say something like "what you're experiencing is related to Narcolepsy, which you don't have." Last year I went through a period where I was tripping much more often and even fell a few times....once landing me in the ER, after which the diagnosis of Cataplexy was made. My Neurologist didn't challenge that diagnosis, but continued to say the same phrase about whether I had Narocelpsy....and continued to use it even after another Doctor reviewed my MSLT and other records and after meeting with me made the diagnosis and started me on Xyrem. The doctor making the Cataplexy diagnosis, wasn't comfortable with or interested in the cost to become able to prescribe he apparently thought no Narcolepsy Xyrem (since its only approved for helping with Cataplexy in patients with Narcolepsy with Cataplexy, or for helping with EDS in patients with Narcolepsy without Cataplexy.) In a later appointment, when I had started having problems (I had originally gone all the way to 4.5/4.5, but then backed off)....he said to not change anything yet, because we can go through periods where we have problems come back for seemingly no reason (he often uses his wife as an example, so he mentioned that she's recently been having full cataplexy episodes in the kitchen lately which has freaked him out...even though its what he treats [he's the only doctor in town that does], and he had known her before Xyrem, etc.) And, her narcolepsy doctor has basically said the same thing about it. More recently, I'm been plagued with Insomnia....nothing like laying in bed loaded on Xyrem and not being able to sleep. And, I had learned early on that getting up and doing stuff is a really bad thing to do with Xyrem... The Dreamer.
  6. Insomnia and fragmented sleep is an attribute of Narcolepsy.
  7. Have you tried talking to your SDS Pharmacy nurse about what your doctor is saying, I'm sure Jazz has re-education programs for the doctors who forget the education they got to become part of the Xyrem success program. I had trouble with conflicting doctor opinions, diagnosis and such. The doctor that first made my diagnosis for Cataplexy wasn't comfortable with Xyrem spouted all kinds of misinformation. And, then said he wasn't interested in taking the training needed to join Xyrem success to be able to prescribe it. In the end he also wouldn't say that I had Narcolepsy. Even though with the Cataplexy diagnosis I now have all 5 major symptoms of Narcolepsy. My Sleep Doctor didn't disagree with the Cataplexy diagnosis either....and that it wasn't seizures or something after the second sleep deprived EEG. The Sleep Doctor before him has also tried the it might be seizures route, which is how I ended up with the other Sleep Doc. First Sleep Doctor was Internal Medicine with sub-specializations (listed in order) of pulmonary, critical care and sleep medicine. My second sleep doctor is a Neurologist. The doctor that would finally say I had Narcolepsy is a Psychiatrist....he had gone through all my records and then we talked for like an hour....not this I only got 12 minutes for each patient thing, and you wanting to talk (and expecting me to listen) is messing up my schedule. Ended the session with getting the DVD and handout and filling out some forms to get me started on Xyrem. He has mentioned that he's working under a doctor in another city for his sleep medicine, though he's the only doctor in the city here that treats Narcolepsy patients (he actually lives in a town midway between the two cities...) plus he knows Narcolepsy pretty good....he's married to one. And, the huge transformation when she started Xyrem, etc. While I see him less often now and for shorter appointments, it still throws me that I can actually talk to him....and its okay that I'm talking to other people or learning about this and that..including things to try. Like I had heard of people taking Provigil and Nuvigil together....Since my Nuvigil alone wasn't doing as good anymore....and supplementing it with Dex didn't go well. I mentioned the Provigil and Nuvigil thing to him...and he agreed to try it. And, its been working great. Though my Neurologist/sleep doctor saw on my medication list that I'm on both provigil and nuvigil and said that's completely wrong....they're different generations of the same thing. Though the neurological things that he's managing are fine, and the neurological things he doesn't know what to do about yet....have him stumped to where he's going to send me away for a second opinion. I'm have pretty bad peripheral neuropathy in my right leg and some in other limbs. But, after all the tests, he can't find a cause or it so doesn't know how to proceed with it, and I also have other long standing issues that have gotten really bad in the last 4 months. He had sent me to ENT because as usually they think its an inner ear problem (and ENT who told me was studying sleep medicine, and I later found that he got his board certification in December 2012....though his practice merged with the one that my first sleep doctor is at...) But, he had said that what I was describing sounded neurological rather than an inner ear problem. Eventually back to my Neurologist who then sent me off to a balance specialist....which was supposed to apply a treatment that would make a noticeable improvement, etc. Well, it didn't. Though in his own assessment he didn't think I had any of the things that I had been referred to him for. Though after the testing, it occurred to me that there seemed to be a left sidedness to how I did...and wondered if my neuropathy might have a factor in things. Since balance specialist had left me a message saying he didn't think I needed to come back...I didn't discuss that with him. Though I mentioned it to my Neurologist...though I don't know if he was listening. And, I don't think I got it right when I had mentioned it while I was being taken to exam room, since doc didn't say anything about the intake note this time.... Now I'm waiting to see if I'm going to get called for an appointment at UNMC, and then try to figure out how to get there. Even though both Omaha and Manhattan are served by American Eagle... out of Chicago or DFW....the only flights involve overnights in Chicago or DFW. Alternatively, I could go to Kansas City and get same day flights....though not really usable same day up and back....and I don't think I could find a friend to drive me. Almost didn't find a ride to Topeka....for that Balance specialist.... Speaking of Navy doctors....the only relative that that has been understanding and supportive through all my struggles leading to my diagnosis and since....has been my aunt, a retired Navy doctor.
  8. I have heard other PWNs praising organic foods, and I did have a bad reaction to fruit once....which was attributed to the kind of chemicals they use during the time of year that I got them. Was coincidence that I was just starting Xyrem.... The problem is organic foods don't last as long as the regular. Its basically 3 or 4 days tops, while I can get a week or more out of the regular fruits and vegetables. Which is important in that I only go to the grocery store at most once a week.....and used to be only on Saturdays. If I missed a Saturday..then I'd have to wait to the next Saturday to go...and there would be times where several of them would go by before I finally make it in for groceries again. I keep pretty well stocked on non-perishables, and there have been times where its either a pizza delivery or a chinese food delivery guy showing up for weeks and weeks straight. Though these days its possible for me to go out on Sundays now.... The Dreamer.
  9. I hadn't read the whole thread close enough I the first time I says "Stop taking Nuvigil and call your doctor if you have a skin rash, no matter how mild." ... A medicine similar to armodafinil has caused severe skin reactions serious enough to require hospitalization. So, its good that you're off now. I thought somebody posted on here that its the immediate form of Ritalin that is approved for Narcolepsy, not the time release version. Though my sleep doc prescribed both...for me, but it just wouldn't last as long as the doctor seemed to think was enough. and he wouldn't give me more to close the gaps...just make the ups and downs worse. It got to the point where it was better to not take it....I felt just as awake not taking it when I was one it, but I didn't have the crashes. And, my boss didn't like my crashes...the tone of my emails would get ugly. In fact about a week and half after I quit, I felt more awake then I had in a long time....though that only lasted for a few days. It was probably just me getting past the withdrawal.... Having never dealt with DSS here as a student, I don't know what's involved...though I also think you should've gone to them sooner for help. They'll likely know most of the doctors in the area, and maybe have pointed you to one. I know when I visited our DSS office, he knew of other sleep doctors in the area that I didn't know about. Basically, if I look at my insurance only lists one doctor for sleep. But, there are several other doctors in the network that also do sleep, but the provider directory doesn't list them under the heading. Though it could have to do with the change in 2007. AFAIK he's the only doctor whose current board certification in sleep was in from the American Board of Sleep Medicine. In 2007, many of the primary certification board do the issuance of sub-specialty certifications in sleep medicine. So, that would probably mean my first sleep doc would renew his sleep medicine certificate from ABIM (American Board of Internal Medicine). Since internal medicine is his primary certification....he has pulmonary, critical care and sleep medicine has his sub-specialties...listed in that order....and it sure felt like the order was very intentional. My second and current sleep docs are under ABPN (American Board of Psychiatry and Neurology)....and the site only lists current certificate...though certificates issued prior to MOC (maintenance of certification) requirement are indefinite... wonder why they went with C for Certification rather than C for Competency? For professional engineers, the C is for Competency...and it doesn't matter when you got the diploma, we're all required to provide documentation annually that we're maintaining our competencies. And, I got mine in 1994 before the rules started changing....though I admit that I was in a hurry to get it in 1994 before the the first rule change. Since before the change you had to accrue 2 years of work experience under a professional addition to writing tests to get it, and they were about to change the rules to requiring 4 years. It took me 4.5 years to get my Professional Engineering it would've sucked if I had to do another 4.5 years to get to 4. ...especially since I was forced to switch fields/jobs after 7.5 years. Plus the company split around the 6 year mark, so I went from dividing my time between an electrical engineering manager (my field of study) and a civil engineering manager (doing work in mechanical engineering) just the civil engineering manager. Though I liked the mechanical engineering stuff more....but who wouldn't. It was a specialized area of fluid dynamics....namely combustion in things that go boom. Though not necessarily explosives, though being next to a defense research facility doing work in EFP's and FAE' tended to be. The other side of the company that split off, did work with UAVs, ULVs, and USVs. Initially that work meant targets...though later they were doing recognizance stuff too. I did coding on one of the early such projects, after they got a variance from the DoD to not do it in ADA (lack of maturity in cross development tools.. the IDE was under Windows 3.11, but the application platform was a VME cage with 68020 processor boards and running svr3.2 Unix...but it was in this heavy steel enclosure that cost over $100,000)....and they had run out of money, and the lead engineer had completed his post doc and gone on to better jobs. neuro/sleep doc got his neuro in 1993 - indefinite, and his sleep in 2009 (November), valid until the end of 2019. While my current doc also has a 10 year certification for his primary specialty as well...also in 2009 (September), valid until the end of 2019. Occurred to me that my ENT doc had mentioned that he was studying for his sleep medicine when I saw him last year.... He's under ABO (American Board of Otolaryngology)...primary cert 1998 - indefinite. Got his sleep medicine in February of 2012, good until June 30th, 2022. I would normally say his office is too far away to consider, though I suppose if things got desperate...I'd might probably decide coughing up $50 for car service to his office might be acceptable, though I don't think it'll come to that now. Interesting, ABO is the only one that says whether or not the member is participating in MOC for their primary certification. The other ones just say they encourage it, but the members are not required to. The Dreamer.
  10. Unfortunately there are things that can resemble narcolepsy and its possible to have a false positive in an MSLT. I've heard depression can, but once heard a psychiatrist say the easy answer is prescribe Xyrem....if its depression, the Xyrem will do nothing. Though seems kind of an expensive test. Couldn't tell the context in which he was saying that.... In fact, I recall in a session ... Where I thought they said REM in the 5th nap is a good indication that its Narcolepsy...but then he shows a sample study where there was REM in naps 2, 3 and 5. And, said the patient in this case didn't have was Depression. Though not as depressing as the talk that went over neuropsych evaluations for accommodations....for getting more time to take the MCATs. First case had ADD, and the second case had Narcolepsy.... at the end we were polled on which one we thought went on to med school. Of course, most of us said the one with Narcolepsy But, the answer was neither of them did. :..( The Dreamer.
  11. No I don't...and I didn't say anything like that. Otherwise, why would saving $480/yr off my premiums matter if it was free. Or going to a 'free' health screening at work, turn into 1000's of dollars in medical hardly 'free'. The Dreamer.
  12. And if you suspect Celiac...its important to find out first, before going gluten-free. Because the gluten antibodies won't be present for the Celiac test after you go gluten-free. Yeah...I don't have the time to prepare and bring in my own lunch....whenever that might be, etc. Though I imagine its just a matter of time that options will exist around campus....though it hasn't stopped me from picking up the occasional book on the subject. The Dreamer
  13. Yes, this is very true. My boss has RA, and used to get super expensive drugs to control it (not as expensive as Xyrem though, but expensive enough to be on the special case tier and have co-insurance capped at $75 / month.... yet Provigil wasn't, so it was costing almost $400 a month in co-insurance...and its the preferred brand, so 35% co-insurance. While Nuvigil is the non-preferred brand, so 65% co-insurance...its cheaper, so only about $200 a month in co-insurance. Though shortly after I started taking Nuvigil, it was moved to the special I was only paying $75/month for it. But, I've digressed). And, eventually the drugs stopped with the help of his wife, he drastically changed his diet to help control his symptoms....and it was more than just gluten that he had cut, night shade vegetables/fruits/spices were also found to be a problem (apparently not that uncommon with RA & inflammation). However, after about a year and half....the diet change alone wasn't keeping his symptoms under control, so he finally realized he needed to go back to see his doctor. At which point he was giving Prednisone, starting at 8x the normal dose and tapering off over 2 weeks. Normally used as a "bridge" medication until the symptoms can be managed effectively by the next new treatment. In his case, the intent is while the major diet changes have cut down the rate of his inflammation, he'll do the Prednisone treatment at some regular interval to knock it down...kind of like as augment to the diet changes. He also lost a ton of weight and was able to become active again as a result of the diet changes. Though when he's just started the Prednisone, he's decided that's an acceptable time to go off his diet and indulge a little bit. He likes the smoked tabasco he'll have that on his lunch near the start of the treatment. Though he hasn't done a belly bomb yet....though when he was first starting....his order was weird....belly bomb with no bun, no additions, and grilled vegetables instead of the normal menu sides. Though the cajun spices they use on the burger and the peppers that are among the grilled vegetables were eventually found to be a problem, so he doesn't do that anymore. Probably not worth it to him to indulge in that anymore. Also probably not that different than his normal lunch at work....which is some grilled patty and some grilled basically what he would get as his Belly Bomb, but without the nightshade seasonings and vegetables. They've pretty much become the family that brings their own kitchen whenever they travel. It used to be he could eat anything he wanted, but his wife has a number of food allergies. But, all his kids also different food allergies....he was the go to guy if you wanted to find what things in the grocery store were free of X or Y or Z. Though the new expanded grocery store has a gluten free section and shelf labels to indicate other items as gluten free. Though wife is allergic to all dairy, and some of his kids are allergic to soy. There's a grain allergy too (not just gluten) in the mix. I think I need somebody in my life to help me attempt the kind of diet change he did. At first he would leave certain things out to see if it helped, but then his wife made him go the other extreme....and slowly add things in to see if it was safe or not. Used to joke when he had to call his wife if it was okay to eat this or that. Now we almost never go out to lunch as group anymore. No more free lunches either....since he's the main person a vendor would want to take out to lunch.... He has signing authority to 10k, and he reports directly to the CIO who can sign off on upto 250k. Because anything over 250k needs to go through the state government (even if the purchase doesn't involve state funds.) Though they were working on change that rule. Of course, a few years ago the department director wasted $2million+ in $5k increments, plundering budgets that were supposed to be for other projects. He had taken over our department, because our director position was vacant and he was told that his expansion plans couldn't be done and he had to work with a unit in our department. Taking us over made more sense to him. One of my functions, he only spent $30k in resources to keep it running....poorly, and banned us from making any improvements. He got it outsourced, we now pay somebody else $2million a year to do it. But, he made such a mess of things that the state brought in various auditors to look around....and we're slowly moving back to where things were before the take over. He was transferred to another department and forced into phased retirement. Now I'm doing more of that in my job, since not all the functionality that people except is available from the vendor....and I'm the only one. Hence in a previous posting...if I should ever decide to get a different job or just stop working...the boss wants extra notice so he can start looking for a new job as well. Since we'd probably have to hang the out of business sign for the University....though I'm starting to hear that things fell apart quickly while I've been away around the NN conference (I took yesterday off as well.) When I got up, I thought about heading in earlier than usual...but now I'm not sure I want to. Anyhoo, I was never very active before my N became such a problem...but I've been thinking that someday I might want to become more active than I've ever been.... The Dreamer.
  14. I had considered trying 5-HTP once...have a bottle somewhere...but there are major interaction warnings with some of my prescriptions, I opted to not try it. I've been having severe side effects from my Dex, which seems to be because I take a Calcium supplement....though my loss of bone density might be indirectly(?) due to my lack of deep sleep....(there's apparently a trial looking at it as a way to predict if a person has sleep apnea) maybe I won't need it now. Though it might be my choice of calcium supplement. According to two interaction checkers I've looked at...( and there's a major interaction between Calcium Carbonate and Dex, but not with Calcium Citrate. Not sure why....though both forms still interact with Cipro...though I just stop taking the Calcium supplements when I've had to be on Cipro....not really looking forward to failing my next urology appointment....since it will mean the doc will want to do a cystoscopy to see what's going on. Calcium Carbonate causes an increase in Plasma levels of Dex.....apparently due to increased passive reabsorption in the kidneys.... which probably means the two are competing for renal elimination... and the calcium carbonate wins....hmmm, found an NIH paper...that says high sodium intake will increase calcium excretion through the kidneys. And, that there are more side effects with calcium carbonate than calcium citrate.... but, carbonate is cheap and more readily absorbed than citrate. Though citrate is better for people with absorption problems or IBS.... probably something to look at then, since Xyrem and certain foods seems to have kicked up my IBS....which I can't remember what it was now....will need to go check my journals. The Dreamer
  15. Don't recall anybody asking...didn't occur to me to ask after I got my RLS question answered....which I had to follow her out into the hallway to ask, and miss the next session (which I had wanted to catch as well.) This has happened to me a few either I'll just keep sleeping in small fragments until its over the 2.5 hour mark, or I'll take a melatonin and then take my next dose once I'm over the mark. When I had asked my own doctor about it, he said insomnia can still happen on Xyrem. Especially if I'm not staying awake all day.... or from other reasons.... Like I haven't been applying all the things I'm supposed to from my cognitive behavior therapy for insomnia since I started Xyrem. Need to work on getting back into that routine. The Dreamer.