tag:blogger.com,1999:blog-8502752724026497961.comments2023-06-29T05:56:18.751-07:00Narcolepsy, NaturallyNarcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.comBlogger36125tag:blogger.com,1999:blog-8502752724026497961.post-16216729303503720722016-05-07T09:49:22.328-07:002016-05-07T09:49:22.328-07:00I honestly think that we are more connected the sp...I honestly think that we are more connected the spirit world. And may possibly be oraclesAnonymoushttps://www.blogger.com/profile/02294864170798260170noreply@blogger.comtag:blogger.com,1999:blog-8502752724026497961.post-19690903962400746182016-04-02T05:28:17.376-07:002016-04-02T05:28:17.376-07:00Thanks for your information.Sleep health is best t...Thanks for your information.Sleep health is best topic. I can get more knowledge about Narcolepsy. Waitting for your new articles.Jameshttp://healthybreaths.com/noreply@blogger.comtag:blogger.com,1999:blog-8502752724026497961.post-169327821640965192015-12-14T02:26:59.059-08:002015-12-14T02:26:59.059-08:00I have Narcolepsy and realise that this condition ...I have Narcolepsy and realise that this condition has a spiritual link. One day i had at least 20 attacks it was really scary someting just didnt feel right. I got down on my knees and prayed to God explaining that something was not right. As i began to pray the attacks began to worsen. I was determined to persevere in prayer and miraculously i did not have anymore attacks that day. Anonymoushttps://www.blogger.com/profile/07916097411261711588noreply@blogger.comtag:blogger.com,1999:blog-8502752724026497961.post-78087307414584035312015-12-14T02:12:41.380-08:002015-12-14T02:12:41.380-08:00I have Narcolepsy and realise that this condition ...I have Narcolepsy and realise that this condition has a spiritual link. One day i had at least 20 attacks it was really scary someting just didnt feel right. I got down on my knees and prayed to God explaining that something was not right. As i began to pray the attacks began to worsen. I was determined to persevere in prayer and miraculously i did not have anymore attacks that day. Anonymoushttps://www.blogger.com/profile/07916097411261711588noreply@blogger.comtag:blogger.com,1999:blog-8502752724026497961.post-34459929848962937072015-09-21T08:48:59.781-07:002015-09-21T08:48:59.781-07:00do you know how to make infused water?do you know how to make infused water?sisterhttp://womanbreastcaring.blogspot.comnoreply@blogger.comtag:blogger.com,1999:blog-8502752724026497961.post-34974252438742065262015-09-21T08:47:25.636-07:002015-09-21T08:47:25.636-07:00nice tips...nice tips...joyanhttp://alternativelyhealth.blogspot.comnoreply@blogger.comtag:blogger.com,1999:blog-8502752724026497961.post-83330541285565673612015-05-10T16:40:08.320-07:002015-05-10T16:40:08.320-07:00Hi & nice to meet you!
I used to work as a Spe...Hi & nice to meet you!<br />I used to work as a Speech Language Therapist before my diagnosis Cataplexy.<br /><br />I am blessed so far with hardly any HH. Very, very grateful for that!<br />Though do notice contact with essences (helpful & friendly). I also try and make sense of dreams, write them down. Might take years sometimes, but very insightful ^_^<br />I also meditate to relax & sleep better. Helpful in energy & clarity too ^_^<br />Thank you very much for this interesting topic!marleennoreply@blogger.comtag:blogger.com,1999:blog-8502752724026497961.post-87822219174528851552015-03-15T05:19:48.266-07:002015-03-15T05:19:48.266-07:00I've certainly had my fill of HH, both visual,...I've certainly had my fill of HH, both visual, auditory and tactile, as well as OBE's. It was about 15 years ago that I was recommended (by whom I can't recall) to put a large quartz crystal underneath my bed. I remember going into a gem shop and choosing the crystal. I had a conversation with the woman at the counter about why I was getting the crystal. She was surprised, as she thought that a crystal under the bed would be energizing and keep me up at night. When I explained my HH's, she said, "Oh, I get it now - it's like a night light to keep you safe." Yes, it was, and I haven't had the intensity or level of "scariness" of experience since. I haven't used a crystal under my bed for at least 9-10 years now, but the intensity has subsided anyway. <br /><br />I am an Angel Therapy Practitioner, and I do remember also calling in the angels to protect me and fill my room. This was about 10 years ago. Unfortunately, the being (mine are more see-through figures) was still there. I believe it's not that the angels weren't present, but that the only "problem" was my own fear. What we see and experience is an interpretation based on our state of being and mind (fear-based or love-based for example). I trained myself since I was a teen not to "see" things, and even when I do readings and relay messages for people from their angels, guides, deceased loved ones, etc., I don't literally "see" them. <br /><br />Also, my experience is that when our lives are in turmoil, the intensity or "negative' experience of HH's may be higher. For example, when my mom died, my HH's became stronger, scarier, and in fact this was when a "being" was in my bed and I had a more tactile experience of it.<br /><br />I'm so happy you are addressing this aspect of Narcolepsy. Some would say Narcolepsy itself can be likened to the ancient oracles or "seers". The oracle would be in a sleepy state, coming out of it to give an oracle or prediction, then fall back to sleep. What would our experience of Narcolepsy be in different times or cultures? Is this a way we are naturally connected more deeply to the spiritual world?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8502752724026497961.post-58405025723380317342014-12-08T10:54:20.742-08:002014-12-08T10:54:20.742-08:00Any cognitive issues like memory...waking disorien...Any cognitive issues like memory...waking disoriented, forgetful for a few seconds?Anonymoushttps://www.blogger.com/profile/11881428923820665997noreply@blogger.comtag:blogger.com,1999:blog-8502752724026497961.post-85679511634060444492014-08-16T22:21:00.785-07:002014-08-16T22:21:00.785-07:00I am impressed by this... and also motivatedI am impressed by this... and also motivatedJessynoreply@blogger.comtag:blogger.com,1999:blog-8502752724026497961.post-54520463362028959212014-04-11T19:01:39.951-07:002014-04-11T19:01:39.951-07:00Hi Jo, thank you for a great question! Reflecting ...Hi Jo, thank you for a great question! Reflecting on my pregnancy's I would say that the EDS was pretty overwhelming especially the first and last trimester. Cataplexy however was extremely mild even absent throughout pregnancy. I had all my kids pre diagnosis, so I was not on any narcolepsy meds. My last 3 kids were all breastfed past 16 months (set of twins included). So I thought being tired was just me being prego and nursing for 3 yrs ;) The cataplexy got worse after my last child was born. The majority of reports I hear coming from women is that they get a break from their normal N+C symptoms during pregnancy. Just as everyone's narcolepsy experience is different, so too is each pregnancy experience ;)Narcolepsy, Naturallyhttps://www.blogger.com/profile/01480192648074452315noreply@blogger.comtag:blogger.com,1999:blog-8502752724026497961.post-74823665241479260542014-04-10T18:03:28.019-07:002014-04-10T18:03:28.019-07:00I have a question for you, did you notice when you...I have a question for you, did you notice when you were pregnant or breast feeding your narcolepsy symptoms went away???Jo Lanehttps://www.blogger.com/profile/03535849072302871894noreply@blogger.comtag:blogger.com,1999:blog-8502752724026497961.post-70475609328451625602014-04-07T19:26:41.219-07:002014-04-07T19:26:41.219-07:00Hello Narcolepticon! It's funny you asked me a...Hello Narcolepticon! It's funny you asked me about juicing as I took a hiatus from it during the winter months. I also took a hiatus from exercise too :( However in late January I started working out at the gym, which led to better eating (not that I was eating all that horribly) and much more recently, in mid March I began juicing again. I do love it, it provides instant energy that sustains itself for a few hours until your next glass of juice ;) And when I say "energy" I mean a narcoleptics energy, not a jittery fake stimulation as with meds, but an ability to not succumb to 20 sleep attacks in a 10 minute span of time. Anyway, although I haven't worked juicing into my daily regimen, I usually make enough juice to last me for the day that I'm juicing plus the next day as well. With 6 kids, homeschooling, sports, and going to the gym daily I simply haven't been able to juice upon demand lol. Take Care- HilaryNarcolepsy, Naturallyhttps://www.blogger.com/profile/01480192648074452315noreply@blogger.comtag:blogger.com,1999:blog-8502752724026497961.post-23473404496671824472014-03-23T04:44:43.028-07:002014-03-23T04:44:43.028-07:00Hi Narcoleptic Nurse
How have you been doing sinc...Hi Narcoleptic Nurse<br /><br />How have you been doing since your organic juicing?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8502752724026497961.post-43139977273453775642014-01-02T19:22:37.881-08:002014-01-02T19:22:37.881-08:00This is ME!!! I began experiencing cataplectic att...This is ME!!! I began experiencing cataplectic attacks about seven years ago. They were very mild at the time, but I went to see my doc about it anyway. She sent me to have MRIs, CAT scans, etc, and of course found nothing wrong. I even went to the ER a couple of times. Since then, the attacks have gotten more frequent and more...hmmm...hostile. Any time I get excited about something or eft onto my kids, I experience a cataplectic attack that lasts around 10 seconds. Anonymoushttps://www.blogger.com/profile/13078953767427986762noreply@blogger.comtag:blogger.com,1999:blog-8502752724026497961.post-90371387801531460292013-11-08T11:57:25.953-08:002013-11-08T11:57:25.953-08:00Thank you Julie, it was your book that showed me t...Thank you Julie, it was your book that showed me the ups and downs of narcolepsy treatment. It is definitely not easy or completely effective (not to mention) the side effects and I commend all those brave enough to try Xyrem (lol). I also sympathize with my fellow PWNs that are on the roller coaster ride of finding just the right balance of meds. There are several people that think talking about non prescription treatment is a bad thing, but aren't we all in this together? I know I'm not the only narcoleptic that is not taking meds. Thank you for not putting my "alternative" view point under the rug ;) I'm loving the blogathon! With thanks- HilaryNarcolepsy, Naturallyhttps://www.blogger.com/profile/01480192648074452315noreply@blogger.comtag:blogger.com,1999:blog-8502752724026497961.post-58424033791085463212013-11-08T11:46:20.636-08:002013-11-08T11:46:20.636-08:00Terrie, love hearing from a fellow nurse! Although...Terrie, love hearing from a fellow nurse! Although it's work, enjoy every moment you get to spend with those new mommies and babies- it is truly a blessing and privilege to be an active participant in the miracle of life. My teenager does not as of yet, have a diagnosis but we are keeping a watchful eye... now I am constantly looking at all of my kids when they sleep, laugh and play- in a whole new light. Health and blessings to you and your fam, and keep in touch!- HilaryNarcolepsy, Naturallyhttps://www.blogger.com/profile/01480192648074452315noreply@blogger.comtag:blogger.com,1999:blog-8502752724026497961.post-37411186135035698852013-11-07T07:30:26.630-08:002013-11-07T07:30:26.630-08:00OMG!!!!!!!
I've read a few blogs this morning...OMG!!!!!!! <br />I've read a few blogs this morning that have hit close to home but yours made me cry. I have narcolepsy and before my diagnosis had a few cataplexy attacks. Well medicated, I work in Labor & Delivery. I don't know that I could do my job without medication. I commend you for giving up your job for the safety of the babies. I too know the heartache you must have felt watching your daughter go through the same things. I hid a lot of mine until we saw my daughter showing signs of it too. She is way worse than I ever thought it could be. Thanks for sharing and making others aware of narcolepsy. Take care. Anonymoushttps://www.blogger.com/profile/09534451382556801408noreply@blogger.comtag:blogger.com,1999:blog-8502752724026497961.post-15574332969353786022013-11-05T08:37:14.440-08:002013-11-05T08:37:14.440-08:00What a beautiful letter, Hilary. Thank you so much...What a beautiful letter, Hilary. Thank you so much for sharing your unique perspective, from your treatment path to your career decisions, your words are importatn and your honesty is a breath of fresh air. I'm so sorry to hear your daughter also has N+C. My thoughts are with you both - two amazing courageous woman! Sending wakefulness and big smiles your way, JulieREM Runnerhttps://www.blogger.com/profile/07192269111947552105noreply@blogger.comtag:blogger.com,1999:blog-8502752724026497961.post-64552518050374963282013-08-27T16:13:00.662-07:002013-08-27T16:13:00.662-07:00You're very welcome Kim. It IS important that ...You're very welcome Kim. It IS important that our voice is heard! Thank you for visiting and reading my blog :)Narcolepsy, Naturallyhttps://www.blogger.com/profile/01480192648074452315noreply@blogger.comtag:blogger.com,1999:blog-8502752724026497961.post-42600478857739178792013-08-27T13:58:51.242-07:002013-08-27T13:58:51.242-07:00Thank you for posting the FDA information. It is ...Thank you for posting the FDA information. It is so important for all those affected by narcolepsy have their voices heard! Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8502752724026497961.post-28568526120732605422013-08-27T13:09:44.904-07:002013-08-27T13:09:44.904-07:00I agree Julie, it is pretty amazing that such a mi...I agree Julie, it is pretty amazing that such a misunderstood disorder is the 4th being highlighted by the FDA when there are hundreds of disorders out there. Thanks for being at the forefront of info and updates regarding narcolepsy!Narcolepsy, Naturallyhttps://www.blogger.com/profile/01480192648074452315noreply@blogger.comtag:blogger.com,1999:blog-8502752724026497961.post-75479979766791149212013-08-27T12:39:35.051-07:002013-08-27T12:39:35.051-07:00Thank you so much for spreading the word, Hilary. ...Thank you so much for spreading the word, Hilary. It's a proud day for people with narcolepsy to be in the national spotlight! :-)REM Runnerhttps://www.blogger.com/profile/07192269111947552105noreply@blogger.comtag:blogger.com,1999:blog-8502752724026497961.post-38818302776199664532013-08-01T20:09:08.050-07:002013-08-01T20:09:08.050-07:00Thank you for your comment, it wasn't rambling...Thank you for your comment, it wasn't rambling at all! It is nice to hear from an older generation as to what the future may hold in regards to symptoms of N+C.<br />Glad to hear your cataplexy has eased up. <br />Health & Blessings- HilaryNarcolepsy, Naturallyhttps://www.blogger.com/profile/01480192648074452315noreply@blogger.comtag:blogger.com,1999:blog-8502752724026497961.post-19993618785093692382013-07-31T10:29:15.206-07:002013-07-31T10:29:15.206-07:00Cataplexy for me occurred the most often and sever...Cataplexy for me occurred the most often and severe between the age of 35yrs to 45yrs. I was on ritalin and tofranil. I had 3 to attacks every day. Then it started tapering off to maybe 5 or 6 attacks per week. When I was 54yrs old, I went thru the modafinil trials and it was horrible. I lasted 9 months and just couldn't take it anymore because the tiredness I felt was 500 times worse than usual. Then the doc gave me dsysoxin prescription. I am now 74yrs.old and this has helped better than anything else. I stopped taking it twice for a year each time. But had very foggy brain, lethargy, more cataplexy attacks, etc. I have tried many, many non drug ways to be able to live with N. One thing that really helped a lot was to totally get rid of wheat in my diet. I followed this for a year but fell off my diet at Christmas time and I am having a hard time getting back on it. Anyways, my point is that the cataplexy seems to have lessened as I got older. I can even go a couple of weeks without having one. I think I have had N since I was 16yrs. but wasn't diagnosed until I was 35yrs. Sorry, for rambling on.Unknownhttps://www.blogger.com/profile/12938050488178711859noreply@blogger.com