Ferret

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  1. I don't think anyone said that they don't care... but their priority and focus is stopping epidemics or pandemics. I'm not sure if this still happens but... in the 70's, any pathogen that could be passed human to human IN CANADA had to be sent to the CDC in Atlanta for confirmation. The scary part is that the sample (of a pure culture of a Salmonella strain for example) was sent in aluminum tubes VIA snail mail to the CDC. Can you say HAZARDOUS out loud? I can also say that possible funding cuts by the current regime in the U.S. is not helping matters.
  2. I will join Facebook when hell freezes over.
  3. There is a lot of work and research that has gone into this thread. Please copy and paste it somewhere onto something for your future reference just in case the forum does shut down.
  4. Excellent article HBr! A very sad yet also uplifting story. Interesting choice of University too since Guelph is also where the best Veterinarian School is. I wish them every success in their research.
  5. Well stated Nikorah. Logic does not always apply to medical problems and this is especially true of Western Medicine. I sincerely hope that you are on your way to feeling better.
  6. Good morning. The specialist (who I hope is a Neurologist with a specialty in Sleep Medicine) will probably book you for a psg/mslt. The psg (polysomnogram) is the overnight and the mslt (multiple sleep latency test) takes place the next day. If any apnea is found in the psg, the mslt will be cancelled. The apnea must be dealt with first. It is possible to have both sleep apnea and narcolepsy but it is the order of things that the apnea is stabilized first and, if continued sleepiness persists after three months, then again a psg/mslt will be done with the cpap (or whatever). The mslt consists of scheduled naps(4 or 5) every two hours. They are looking for how quickly you fall asleep and how quickly you enter REM. On those naps, you must enter REM at least twice and the average speed of falling asleep must average less than 8 minutes for a diagnosis of narcolepsy. Preparing for the psg/mslt requires that you are free of any medications (and I include nicotine and cannabis in meds) for a period of at least two weeks. Many meds suppress REM so they will interfere with the test. For some people this is not possible and that is a decision between you and your Doctor... just be aware that they can affect the results. There's an excellent thread on here somewhere about what to take with you and what to ask about before it happens. Don't have time to look right now but I will.
  7. Let me state, right off the bat, that I don't want anyone to smoke cigarettes. They are a proven health hazard. PERIOD. There are other ways to use nicotine and they include vaping, the patch and the gum. Also, if you have never smoked or used nicotine then you shouldn't. But, if you have Narcolepsy with or without cataplexy and do use nicotine then this is the explanation of why you are self medicating. Nicotine is both a REM suppressant and a stimulant. It helps my brain to function and it lessens the severity of cataplexy. It is also addictive but no more so than any other med used for Narcolepsy. If you suddenly withdraw it, without tapering down, you will experience side effects... increased EDS is one of them but, for those with cataplexy, it will increase the severity and frequency of events dramatically. Nicotine is also being studied (with great success) to help other health issues that affect both mind and body. Studies of Nicotine as it affects Narcoleptics... http://www.jneurosci.org/content/25/21/5225.full http://autoimmunepatient.com/wordpress/2013/03/07/narcolepsy-and-nicotine/ http://sleepeducation.blogspot.mx/2010/03/narcolepsy-waking-up-with-nicotine.html https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3311418/ http://forums.narcolepsynetwork.org/index.php?/topic/13980-an-accidental-confirmation/#comment-55264 Other information and studies on the benefits of nicotine... http://www.nature.com/aps/journal/v30/n6/full/aps200967a.html http://health.howstuffworks.com/wellness/drugs-alcohol/nicotine-health-benefits.htm http://themindunleashed.com/2014/10/nicotine-are-we-wrong.html http://ecigarettereviewed.com/top-10-studies-on-nicotine-you-need-to-know-about/ http://www.scienceagogo.com/news/20031012195753data_trunc_sys.shtml https://www.nytimes.com/2016/03/06/opinion/sunday/can-nicotine-be-good-for-you.html?_r=0 So, now, all the information is in one spot and fairly easy to find for reference. I will add to the thread if I come across any other information. It would be helpful if those that are outraged would actually read the material that I've linked to before jumping all over me. Peace.
  8. Functional is all any of us wants to be. I was diagnosed in '86 so thirty years ago. At times it's been a rough ride and the "normal" meds don't work for me. I don't have sleep paralysis or the wild dreams any more. I maintain the status quo by eating healthy and taking a three hour nap every afternoon. I smoked cannabis once when I was thirty and only tried it again as oil when I was 62... now 65. I don't get high 'cuz I'm asleep. Please read "Cannabis Oil Cheat Sheet" on this forum for the information that I have put together. I also don't drink alcohol because it will screw up the quality of your sleep. Google for info. Whatever works for you.
  9. When you develop cataplexy, HBr, THEN you can dictate Nicotine usage... not before. I do not want anyone to smoke cigarettes either BUT since you have NO idea or experience what happens when nicotine is withdrawn from a person with cataplexy, I would suggest you take your holier than thou attitude down a notch. Sorry that you developed other health problems from smoking but you simply don't have cataplexy and cannot possibly relate. Patch, gum, or vape. Be aware that Nicotine is not only lessening the severity of your cataplexy but is also acting as a stimulant. IF you withdraw it suddenly, you will go into rebound cataplexy (also called status cataplecticus) and it is very nasty to deal with. Take your normal cataplexy and multiply the frequency and severity by a factor of at least 10.
  10. @amelia First, I am so very sorry for what you (and many others) are experiencing right now. I can tell you that, although I had dippy knees for about three years before diagnosis, it was grief that made it glaringly obvious that I had cataplexy. Didn't know what it was but it sent me scurrying to the Doctor. Please go to a Doctor (preferably a Neurologist who specializes in sleep medicine) and get started on a diagnosis. Without a diagnosis you will have no access to the prescribed medications that may help you. Because, you DO have cataplexy and it's not going to go away. Take witnesses with you or written and signed affidavits describing what happens and under what circumstances. Nicotine (vaped NOT smoked) will lessen the severity of the cataplexy and also act as a stimulant but other health issues need to be taken into consideration if you decide to go that route. I'm still vaping. I also take a 1/2 a grain of rice worth of cannabis oil sublingually just before bed and have pretty much eliminated my cataplexy. I'm telling you these things because of the hell that other NHS patients have experienced in getting diagnosed and getting access to meds. Just do what ya gotta do to cope. Sending gentle cyber hugs to you and your friends.
  11. I can't because it's hard for me to figure out if the heat comes from hot flashes or N. And I am not unmedicated nor do I think that anyone else is unmedicated (one way or another). Either way it's tough to answer the questions as asked except for the first one so I didn't.
  12. http://www.gaiaherbs.com/
  13. I'm assuming that you mean normal night sleep? If so, then never.
  14. It's never quackery when it works and everything is worth a try in the search for a functional life. Somewhere on this board is a statement that I made to Hank... "I'd stand on my head for an hour a day if I thought it would help". Unfortunately that would probably just play hell with my glaucoma
  15. That was a pile of meds that were taken the night of the psg and, honestly, I'm too tired to look them all up and check their interactions to see whether or not they should have even been allowed. Sorry.