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Everything posted by HBr

  1. The Demon-Haunted World: Science as a Candle in the Dark --by Carl Sagan This is one of the most powerful books I have ever read. As you get into the last few chapters, you will read much that is pertinent to our current times. The N connection could be made in the sense of research funding and also health insurance policy in the USA.
  2. http://www.ctvnews.ca/health/university-of-guelph-setting-up-lab-to-research-lyme-disease-with-1-4m-donation-1.3458844 Another Lyme Disease story.
  3. I have read about some guy who wants to do head (brain) transplants - that might work for us too. Glad to hear you're feeling more positive today. You helped lift me out of a slump too - one day at a time is all we can ask for sometimes.
  4. Medications, Rx or natural, diet, outdoor exercise and techniques like good sleep hygiene and CBTi will all be part of your journey over time. Like or not (and I don't like it, I admit) a whole lot of patience is required when dealing with our demon-invented disorder. If Xyrem is not causing intolerable side-effects, I'd suggest sticking with it for another couple of months, as nothing else will be as powerful for consolidating sleep even though the actual hours may be less. You could discuss with your doctor the possibility of splitting your dosage into three parts, rather than just two, as that may help with the early morning restlessness. Try to limit the caffeine intake as much as possible after midday and drink lots of water to flush the Xyrem salts out of your system (but not right before bedtime). We all need the 'hopeful words'! I'm in the 'old timer' class and pretty much have to find my own hope wherever I can - at least you have a wife to get irritated with you Good luck and may you find your way my friend! EDIT: If these Rx stimulants continue to be ineffective at reasonable dosages, IMHO, it would be best to get off them sooner rather than later. Of course, consult your doctor first as you said.
  5. Hi Oppi. Please know that you are not alone in your frustration and thoughts. The sun is shining today; look out, get out, and try to consider what is good about life, nature, and friends and family. I need to do that every day myself - we do know your pain here! I have a teacher friend who is one of the very few who understands narcolepsy as she also knows a teacher who has had to go on disability, but I don't how many years she got in first. Personally, I would think teaching* would be as good of a career as any for a narcoleptic, as you would be on your feet and active and only need to be clear-headed for short periods with perhaps some accommodation for breaks between classes. Perhaps you could tell us something about your treatment regimen and how effective it is? Some really brilliant people have managed a full and productive career with N and I recently read about one lady still going strong on the lecture circuit at 72 years of age, so please try to remain hopeful! EDIT: * The idea just came to me that you might want to consider specializing in teaching special needs kids. The hours and conditions might be less demanding and I think you would have a natural empathy with your students.
  6. I understand that T2N (narcolepsy without cataplexy) is considered a 'spectrum disorder', meaning that the diagnostic lines between IH and N can be quite blurred. Have you discussed treatment for getting better quality consolidated nighttime sleep with your doctor? Good sleep hygiene and possibly CBTi are techniques you should research. Stimulants of some form are used by us all, but eventual tolerance issues and side effects have to be considered. Outdoor exercise and a good diet are essentials. Good luck with your journey in life!
  7. How much do you supplement vit D? I currently take 4000IU, but I believe you can go up to double that. Have you tried Aswaganda? This was recommended to me by Natdoc and I like its effect. You can find it as a tincture in natural health food stores and it is added to a glass of water for easy consumption. In the evening, I like to consume a bowl of probiotic yoghurt mixed with some whole grains for fibre, plus a little fruit like a banana, plus powdered prebiotic inulin (ground jerusalem artichoke). That should help with your immune system and sleep. You should likely watch the level of all your electrolytes - sodium, potassium, calcium, and magnesium. Always consult your doctor on such matters.
  8. Suggest you read The Demon-Haunted World: Science as a Candle in the Dark by Carl Sagan. The narcoleptic mind is under constant stress but by reading that book you will be better able to understand your experience.
  9. 5 hours is not enough to allow for sufficient sleep, IMHO.
  10. Okay, I just did it, but isn't it fairly meaningless without a comments section after each question?
  11. A moderate amount of caffeine may be okay, but it is futile and counter-productive to try to overcome tolerance. Also, intake should be severely limited past midday in order to avoid affecting your sleep. Cacoa, or high cacoa, low sugar, chocolate, taken with your coffee should boost the effect and cacao is healthy food. Please quit smoking now! Thrive or Nicorette Lozenges (nicotine bitartrate dihydrate) may be used initially to help in the process. It can be done - I quit 3 years ago after 45 years of coffin-nail usage. Daily outdoor vigorous exercise (brisk walking/jogging/stairs) will help tremendously by producing natural endorphins in the brain. Since I could no longer smoke in the morning, I just got up early, did some stretches and hit the trail, and did it again in the pm as well. It works, but you must be determined and set a cold-turkey date. Very short-term relapses at the beginning are no reason for major concern - soon you will get in longer smoke-free periods and will be on your way and never look back.
  12. @Nocturne: I think we would need to know what meds you are on to offer better insight. You say your wakefulness has improved - what has made that happen? Regarding the dehydration issues: have you tried increasing your daily fluid intake?
  13. Strong coffee, dark chocolate, cacao, yerba mate, cayenne, etc. might help to get you by until you see the doc. Exercise outdoors daily, if you can manage at all. There's Nuvigil and Desoxyn in the meds department. You might be able to order some Potolisant, if you looked into it - it's approved in the EU, I believe, and may be allowed into the U.S. under certain conditions.
  14. @Teach: Sorry about hijacking your thread. My mother used to faint at the sight of blood. She didn't do well with high temperature and humidity either. I hope you might find something useful in this discussion of natural remedies. @Natdoc: Thanks! I look forward to getting this regimen in place. I was wondering if the Ashwaganda might be helpful for sleep attacks? Or might there be something else for this that you recommend? My ass doesn't concern me, just my 'heavy, unmotivated, and unhappy head' after EDS/sleep attack sets in - what a useless feeling after what starts out to be a perfectly hopeful productive day! My T is fading away to almost nothing even after 3+ weeks on the gel, but I'm using a super low dose due to my GP's (misguided, I believe) concern about prostate cancer. Recently, the dose has been doubled, but is still half the recommended adult dosage. It does seem to help me get through the day and perhaps helps a bit with sleep. I think I may need to get my estradiol checked too, in case that is interfering with the T uptake? I do better without Rx meds - caffeine and dark baker's chocolate, and exercise and diet, get me through the day, but it's a daily battle. Sleep is better with the regimen I posted about above.
  15. Valerian update from another thread: http://forums.narcolepsynetwork.org/index.php?/topic/14118-n-and-fainting/&do=findComment&comment=57104
  16. https://en.wikipedia.org/wiki/Valerian_(herb)#Mechanism_of_action https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4394901/ http://www.ebmconsult.com/articles/valerian-valeriana-officinalis-treating-insomnia-sleep https://ods.od.nih.gov/factsheets/Valerian-HealthProfessional/ Have you used valerian to improve sleep? Please provide details, if possible, of dosage, length of treatment, brand and formulation used, and your results. Thanks much!
  17. It was pulled off the market north of 49 ages ago, although the druggist did say they hadn't done the same for the generic version. There was associated deaths. I'm surprised to hear it was still available 7 years ago!? The stuff made me extremely tired and I'm glad I discontinued it quickly. GlaxoSmithKline has paid substantial fines, paid settlements in class action lawsuits, and become the subject of several highly critical books in relation to its marketing of paroxetine, in particular the off-label marketing of paroxetine for children, the suppression of negative research results relating to its use in children, and allegations that it failed to warn consumers of substantial withdrawal effects associated with use of the drug.[12][13][14]
  18. Is that something like standing on your head for an hour? Now that's an act I'd like to see a furry, four-footed critter performing. Yeah, right after I replace my aging iMac, maybe acquire an iPhone, and then figure out how to pay for both. Oh, and then there's that nice little shack out in the country that I've had my eye on, but then the issue there is more about an unreliable brain and associated emotions. Seriously though, what benefits would I derive and from which device? I'm currently off all Rx meds except TRT (recommended by Dr. J. ). Last night, I took 3 pills of Jamieson's Valerian and a Zinc Lozenge for good measure. For one night, I slept much better and the benefits are obvious today, although a sleep attack may well arrive at any time (god, how I hate having that specter following me around all the time!). I should mention that I'm also now into pro and prebiotics at bedtime. Basically, a bowl of probiotic yoghurt with fruit and natural honey, topped with prebiotic inulin (powdered jerusalem artichokes, aka sunchokes). Seems to be helpful - there was a BBC docu recently about an insomniac GP who found prebiotic supplementation quite helpful, and I read somewhere that probiotics are supposed to work on GABA.
  19. Hey guy, I've followed your story right from the beginning and my heart goes out to you! I have also gone down many wrong roads in life myself and have had to pay a high price for my poor choices, but like you, I'm still around to fight another day. You're starting down the right road now, and I know you're just ornery enough to make it work! It's gonna be a fight for your life, but despite any short-term setbacks you may see, I'm living proof that both your issues can be overcome for good. Never give up! Good healthy food, and as much outdoor physical exercise as you can muster on a daily basis, will help speed your recovery. You will have me rooting for you, and well, why not let's enlist the powers of the cosmos as well.
  20. What are you taking for the nighttime sleep side of the equation? Are you N or N + C? Are you careful with good sleep hygiene and diet? I'm 40 plus years older than you and still trying to figure out how to deal with N, but I'm still kickin', so keep the faith my friend. Caffeine and dark chocolate and exercise are good stimulants, but I realize they are not always enough.
  21. Sounds like a great list and I am familiar with and use, or have used, most on that list with the exception of Passion Vine. I really would like to get a full list of dosage amounts though and I certainly will add the items I lack as soon as I can find a source for them. Thanks much! BTW, the only 'Quack' that concerns me is a certain 'Duck' that runs an otherwise great country you may be familiar with.
  22. @Natdoc: I'm with you 100% on that, but isn't the very essence of N fragmented unrefreshing sleep at night combined with, or associated with, daytime sleep attacks? So, if Xyrem is off the table, and pharmaceuticals such as Trazodone and others fail, how do we get that 'adequate sleep'? I have tried to practice good sleep hygiene and some form of CBTi, but I cannot find a working solution. In my case, refreshing daytime naps seem to be impossible due to my genetics. Your insights are appreciated always.
  23. And you're still alive? That's quite a combo - do be careful!
  24. Tends to rot your liver leading to possible death.
  25. Tried it and had a bad experience - no idea now what dosage. Only took one pill and couldn't sleep that night, but then couldn't stay awake the next day either (but also couldn't sleep until 9:00 PM). It took a month or more to recover from that one pill. YMMV obviously, but I don't think it's a good candidate for long term usage.