All Activity

This stream auto-updates   

  1. Yesterday
  2. 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.
  3. 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.
  4. Here's the actual information about post Lyme's disease syndrome from the CDC, which recognizes it as a real condition and specifically states it's common to take months to recover. The whole concept that the CDC doesn't care, etc is nonsense. https://www.cdc.gov/lyme/postlds/index.html
  5. We're currently discussing options here
  6. Is this for real? Are they seriously discontinuing the forums for good? I feel this is a serious disservice to narcoleptics. How else are we suppose to come together and discuss our rare disease with one another? This doesn't make any sense
  7. Chronic Lyme is considered vague pseudoscience. It's basically a catch all of vague undiagnosable symptoms. An entire industry has cropped up to draw patients into unproven treatments. And who knows what is actually really wrong with these people. I think it's a scam and a sham and a shame.
  8. Last week
  9. I used simple machines to run my old forum and it was super easy to install. I'll shoot you a pm later
  10. I JUST dropped a script off today (at Walmart--the "preferred" pharmacy of my medicare advtg plan). As a tier 4 drug, my cost for zenzedi (10 mg/180 ct) is just under $300.00 THIS month (my insurance plan has a $300 deductible!); then $97.00 co-pay per month thereafter. NOW, if I can get them to drop it down to a tier 3 drug, I will pay $47.00 THIS time and thereafter. Of course, Walmart doesn't have it in stock..its on order--delivery next Wed or Friday (I'm out after tomorrow!). The brand manufacturer (Arbor) has a coupon (I wasn't eligible because I have fed disability benefits), but I checked and it's still posted here: http://zenzedi.com/savings.php (this is a second coupon that came up, fyi: https://www.helprx.info/zenzedi-discounts-coupons . Finally, if you don't already, definitely check retail prices via goodrx.com -- the costs variance can be HUGE--for instance, I JUST looked up generic zenzedi ("dextroamphetamine" - same as Dexadrine)-since that's what you use: 10mg/180 ct--and the prices in my area range from $190.44 at Walgreens -- to $500.96 at Walmart! (interestingly, the BRAND is $264.45 at Kroger (supermarket) - up to $1,286.78 at Walmart!!! (obviously, a little shopping around can save you a TON of cash!) Good luck with your search--I hope you soon find something that works well for you! k
  11. Hi Opie- I am a teacher also and have the same problem in the mornings. But, I know I would have that at any job and the reality is I think teaching is one of the best careers for PWN because I am constantly on my feet; no Day is the same ; I am alert because there is so much stimuli and intake. If I had a desk job, I'd sleep all day! I use to say that before I was diagnosed. Other than rushing in every day ( again that keeps me awake and I don't have time to sit and stare at the computer screen or write out my lessons because I would nod off in a second) but another hard time for me is if it the rotation day when I have planning last period . I never get anything done and often will find myself nodding off a great deal- even with the adderall I take and Xyrem . My sleep dr wrote me a note to take to to my employer. I still have to be there on time , at least the administration knows I have a legitimate excuse
  12. Just fyi, I have free web hosting so if someone knows how to set up a forum, I'd be happy to donate my web hosting. Given the forums on this site are active and threads routinely produce thousands of hits on NN, if they are dumb enough to to abandon us, I say to hell with them. Surely a WordPress forum can't be hard to set up.
  13. Heed this advice!
  14. That's how I feel about Twitter. I'm ok with FB tho. But a lot of ppl won't join a narcolepsy group on fb tho, cuz they don't want to risk outing themselves to co-workers et al. I created a secret group one time that was invite only with a hidden roster and still very few takers. I wish I had more spare time. I'd buy some webhosting and build a new forum and backup some of the NN forums greatest hits on there. But I know I don't have time to manage it by myself, so it'd end up withering like this forum. I miss the free time I had a student for stuff like that.
  15. @closetwrtr how much does zenzedi run per month? I get generic Dexedrine at the maximum dose for $160 cash per month.
  16. @HBr nah I don't think so. I don't think it's possible to do that on this forum anyway. I wish the polls were better designed so better information could be gathered. Ie it would be nice if I could tell if cold feet was more associated with n2. I think it is. What got me wondering is that I have n2 and frequently have cold feet at night and thermoregulation problems. Since a few studies have shown body temperature regulation in N influences the quality of sleep, I was curious how common this phenomena is because there are potentially some treatments. @Ferret I'm medicated but I always had a heating pad at my feet prior to diagnosis so I was meaning more, if you can recall, was this a frequent problem pretreatment? If that makes sense. One of the medication's mechanism of action showing promise for sleep in N also was being investigated for hot flashes oddly enough. I'm not sure how hot flashes feel though! For the record, normal healthy people tend to have warm or hot feet prior to bed. Cold feet delay sleep onset. It seems the majority of n2 suffer from cold feet at night for some reason based on our less than ideal response rate.
  17. I will join Facebook when hell freezes over.
  18. Proboards let you create and manage a free forum (has pop up ads though!), or RareConnect.org have a narcolepsy group that we could join?? Fingers crossed that the email saying this forum is closing is a hoax.
  19. @Nikorah oh I'm just saying I wouldn't refer to it as chronic because the medical community associates the term with hypochondriacs. You're right that chronic generally means an extended period of time usually. The CDC recognizes about 6% of people continue to have problems after treatment. Many of the chronic Lyme's folks believe that continued antibiotics help but research shows it's no more effective than placebo. The CDC refers to the post infection state as something else, perhaps caused by damage by the infection that persists after the pathogen has been eliminated. I mean hell anything that damages the CNS may be irreparable or take a long time to recover from. Look at narcolepsy for instance. I'm not suggesting there isn't a real post treatment Lyme's disease condition, just that it's not referred to as chronic Lyme's by the medical community.
  20. I got an email about it. They are encouraging everyone to go over to the Facebook Support Group. The last day of the forums is July 14. There really is some good stuff on here and I was tempted to save some content for my own reference but I wouldn't know where to start. I did snag a few of my own posts as it's interesting to reread them later down the road to see what changes.
  21. @Nightmore a B2 deficiency or b12? What dose of Adderall? I'm assuming you're taking instant release? Dexedrine (dextroamphetamine) is more stimulating than Adderall and has fewer cardiovascular side effects. Caffeine really should be stopped after 12-2pm unless you're a rapid metabolizer. It disrupts sleep architecture even if you don't notice it. I've had a few magic bullet experiences but they were short lived. I got to the point where I'd tried everything and nothing worked anymore. After some lifestyle alterations things got better though.
  22. 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.
  23. 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.
  24. I haven't heard of anything either as far as the forum closing, no announcements, and no emails. I'm personally not a fan of reddit's format as it pushes down quality conversations irregardless of the popularity of it. It's a nice place to vent, but their Narcolepsy subreddit doesn't seem to be particularly open to scientific discussion or alternative treatment options for those of us who don't feel 100% with current Rx options, which is pretty much everyone.
  25. I haven't resolved the mold issue, I still live in a house with mold problems and I still have the same issues with excessive memory loss, brain fog, photosensitivity, constant dehydration and constant trips to the restroom whenever I try to re-hydrate myself. As for the AVP issues, I have seen Desmopressin, a safer synthetic version of AVP, being sold on a number of credible online pharmacies. Of course, it's a hormone so I'd read up well on it before deciding to try it but it seems to be the best option. Aside from that, Licorice increases aldosterone, also involved in hydration. For vasopressin, it seems Forskolin has similar effects (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1193004/). It can be a huge rollercoaster sometimes, despite everything, ups and downs seem to be normal for me now. Here's hoping you can find a solution for the hydration issues.
  26. Shall we all move to reddit then?
  1. Load more activity