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#1 triplettt

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Posted 05 April 2011 - 02:35 PM

My daughter is 16 years old and was diagnosed a year ago with Narcolepsy/Cataplexy. She is currently taking Nuvigal and Zoloft . These medications have worked well, BUT her Doctor would like to switch her to Xyrem to improve her night time sleep . I am VERY concerned about starting this new medication and would love an alternative approach for treatment. I have googled acupuncture and the sites CLAIM they can help with Narcolepsy but I really don't want to just put my child through treatments that I have no understanding of. I would be more willing to try Acupuncture if I knew that it was beneficial in treating her condition. If we can improve her night time rest naturally then maybe we could just stay with the Nuvigil and Zoloft. She desperately wants to drive but her doctor would like to see more improvement before releasing her to do so. We have done 2 sleep studies and a MSLT and one MWT. We are open to suggestions regarding a more holistic approach to improve night time sleep.

#2 ohiolor

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Posted 05 April 2011 - 03:00 PM

Hi Triplett and welcome to the NN message boards! My husband has Narcolepsy without Cataplexy and unfortunately is not on any N medications because the side effects were far worse that the sleepiness. He is retired, so when he becomes too sleepy, he takes a nap. I think that if there were any success using acupuncture for N, my hubby would have tried it. I've also never heard it being discussed as a treatment option at any of the NN conferences nor on any of the sites I have visited online.

Lorrie

#3 triplettt

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Posted 05 April 2011 - 03:18 PM

Hi Triplett and welcome to the NN message boards! My husband has Narcolepsy without Cataplexy and unfortunately is not on any N medications because the side effects were far worse that the sleepiness. He is retired, so when he becomes too sleepy, he takes a nap. I think that if there were any success using acupuncture for N, my hubby would have tried it. I've also never heard it being discussed as a treatment option at any of the NN conferences nor on any of the sites I have visited online.

Lorrie


Thank you Lorrie! I looked back at topics and could not see that Acupuncture had been discussed. I am hopeful that someone has looked in to this and had success with it! We live in a smaller town so we have to drive to Dallas for treatment...I am thankful that your husband is able to manage his Narcolepsy with naps.

#4 Carly

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Posted 13 April 2011 - 07:52 PM

Hi triplettt,

Fortunately, I have been receiving acupuncture treatment for the past 4 months, so I can help you with any questions.

I am still undiagnosed because of a failed sleep study, but my doctors and myself are 99% positive that I have Narcolepsy. I wanted to try natural/alternative remedies BEFORE I went to precription medication, so I started with acupuncture. I started with having treatments twice a week, and currently I am having treatments once every other week. My acupuncturist's aim is to treat holistically, not just focus on daytime sleepiness, or nighttime rest. When I first started treatment, I was in a very poor state, and had many physical ailments due to how overwhelmingly tired I was. I found the acupuncture really helped treat those symptoms; body aches, head aches, hallucinations, anxiety and depression. I would feel very alert, healthy, and had better sleeps the day of and sometimes the day after a treatment. However, it was not enough, and I eventually had to be put on medication (trazodone for sleep, provigil for daytime). I still like to receive treatments every couple of weeks just to keep me "afloat", but life is still a struggle.


As much as I do believe in Eastern medicine, I do have some issues with it. My acupuncturist has told me many times that disease arises when your energy is blocked, which I can understand. However, he says (in my case, anyways) that the blockage is created when a person holds onto stress/trauma from their past. He believes that if I keep up with acupuncture and meditate to relieve my burdens of an abusive childhood, that I won't have Narcolepsy anymore. Which is something that you can be hopeful about, right? However, I don't think it's that simple, and it's created a lot of guilt for me to think that I can't heal myself.

I hope that was somewhat helpful.

#5 The Mom

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Posted 14 April 2011 - 05:16 AM

My daughter is 16 years old and was diagnosed a year ago with Narcolepsy/Cataplexy. She is currently taking Nuvigal and Zoloft . These medications have worked well, BUT her Doctor would like to switch her to Xyrem to improve her night time sleep . I am VERY concerned about starting this new medication and would love an alternative approach for treatment. I have googled acupuncture and the sites CLAIM they can help with Narcolepsy but I really don't want to just put my child through treatments that I have no understanding of. I would be more willing to try Acupuncture if I knew that it was beneficial in treating her condition. If we can improve her night time rest naturally then maybe we could just stay with the Nuvigil and Zoloft. She desperately wants to drive but her doctor would like to see more improvement before releasing her to do so. We have done 2 sleep studies and a MSLT and one MWT. We are open to suggestions regarding a more holistic approach to improve night time sleep.

My son is 16 also and I am in the same mindset as you are. I never thought of acupuncture (but will keep it in the back of my mind). I have read some threads of people having success with adjusting carbohydrate intake (less carbs early in the day) and some threads saying a gluten free diet helps. I am going to start there but I am trying to look into other natural ways too. I know there is a holistic specialist in my area and am considering that as well.

#6 SleepingPhoenix

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Posted 14 April 2011 - 07:08 PM

My daughter is 16 years old and was diagnosed a year ago with Narcolepsy/Cataplexy. She is currently taking Nuvigal and Zoloft . These medications have worked well, BUT her Doctor would like to switch her to Xyrem to improve her night time sleep . I am VERY concerned about starting this new medication and would love an alternative approach for treatment. I have googled acupuncture and the sites CLAIM they can help with Narcolepsy but I really don't want to just put my child through treatments that I have no understanding of. I would be more willing to try Acupuncture if I knew that it was beneficial in treating her condition. If we can improve her night time rest naturally then maybe we could just stay with the Nuvigil and Zoloft. She desperately wants to drive but her doctor would like to see more improvement before releasing her to do so. We have done 2 sleep studies and a MSLT and one MWT. We are open to suggestions regarding a more holistic approach to improve night time sleep.



I'm an N patient and I've tried the Acupunture as a therapy that helps me with the sleepiness and better to keep a better balance and even it has improved my vision. I know it doesn't work the same in every patient, but I'm willing to try anything that will help me control my N since the attacks are very bad, and I'm under such amount of medication, that my doctors don't know what to do with me now. I have also tried chiropractic and massages to help me with the muscle tone and the pain of falling asleep in places that do not provide the support for my body, and physical therapy for when I have cataplexy to improve healing. To me anything goes as long as it helps. There is nothing wrong on trying it. I have restricted driving, and have learned to sense my attacks with enough time to stop the vehicle in a safe place (even the emergency lane) and sleep without hurting anyone. You see I live alone, and depend on no one, so there isn't many options available and I can't hire a driver or a nurse to just keep around when these things happen.

It is not easy but it takes time, effort and a lot of determination. When the attacks started, I decided to keep a journal on mood, food, time and what I had t do to keep awake. That help me to realize the situation was cronic and seeked help and ended up disgnosed. But now it also helps me to know more or less the times of the day I'm more alert, those when I'm not, and somehow make windows of oportunity to do complex chores and when the automatic behavior can be used in my favor. As a patient you really need to listen to your body, as for feedback from those around you, even if it hurts, and find a way to deal. It is very hard sometimes and not always I'm successful, but if somehow you can anticipate, what triggers you can avoid or learn to control, life gets a little easier.

I don't seek a cure, just a quality of life decent enough to keep going. I'm 39 yrs old, supposedly I had thissince my teen years, and did not got diagnosed until now. So if I wanna keep on living and doing the things I love, I'll do anything within my power to cope, and better my situation. Hope this helps a bit.

#7 SleepingPhoenix

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Posted 14 April 2011 - 07:21 PM

My son is 16 also and I am in the same mindset as you are. I never thought of acupuncture (but will keep it in the back of my mind). I have read some threads of people having success with adjusting carbohydrate intake (less carbs early in the day) and some threads saying a gluten free diet helps. I am going to start there but I am trying to look into other natural ways too. I know there is a holistic specialist in my area and am considering that as well.



I have read regard carbs and I don't remember where, but I remember that the brain craves carbs when sleepy. I used to drown myself in sugar processed carbs and caffeine before diagnosed. After the N was found I reduced the carbs to those times of the day that will help me keep awake and only used complex carbs. Caffeine is now completely out of my diet and my health improved a lot! But I'm also aware not to abuse the amount of carbs. That can mess your sugar levels and other stuff that will not help you at all. I used carbs more for early breakfast and reduce amonts as I go during the day, until 3:00 pm when I boost myself with a bit a bit more and do not consume more after that or just a minimum, prior to 6:00 pm, so I can let my body sleep when it needs to. It helps me a lot. Some days I can even sleep 8 hrs a day as a normal person! Still it is not a fool-proof method. See how your body works and use then when needed as part of the treatment.

#8 Jiffer

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Posted 02 May 2011 - 12:21 PM

I tried acupuncture, weekly treatments for 6 weeks. This was before my diagnosis was confirmed, but I strongly suspected N and told the practitioner so. (I have since confirmed the diagnosis by MSLT.) I told her about a few other issues going on with me as well. She said she had not treated the condition before and was eager to try it.

While I found the acupuncture sessions very enjoyable, and while I was very impressed with the effect on some other issues (allergies, menstrual irregularity), I would not say they helped with my EDS. In fact, the practitioner had to tweak my acu points after the first session because I CONKED OUT for about an hour at the clinic and then took a 2 hour nap later that same day. The opposite of the desired effect....

Related to some other comments--increasing protein and cutting simple carbs in my diet did help with my energy level. I also lost about 10 lb--bonus! Now that I am taking Provigil, I should try cutting back/out caffeine and see what happens!

#9 magpie

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Posted 09 May 2011 - 09:06 PM

I just had my first acupuncture session, and I loved it! I feel amazing and awake. The practitioner said people usually stay for about an hour, but I was ready to get out of the chair after about 20 mins since i was so energized. She only put in needles at two points on my hands (4 needles total) one on each foot and one on the top of my head- so only 7 total. I started feeling a warm sensation where the needles were, which turned into a slightly tingling feeling which then radiated up my extremities. I felt like I was high, which apparently is not that uncommon. The practitioner took out to needles after about 30 minutes, when my pulse was more smooth, and she said my eyes looked more clear and my color was better. It might not work for everyone, but I would definitely recommend trying it out to anyone who things it might help them. I found the place I went to through the Community Acupuncture Network- it was very affordable just pay what you can on a sliding scale between $20-$40. Here's the website for anyone who is interested: http://www.community...urenetwork.org/

#10 VSfan88

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Posted 27 April 2013 - 04:23 AM

I'm currently studying acupuncture in China and we have learned a lot of diseases but to my disappointment, narcolepsy was never covered up in our studies. In fact, I told my professor about narcolepsy and she didn't even know the disease. My professor gave me one treatment but it was more of an improvised treatment, selecting acupoints that would fit the most to my symptoms. So I'm not sure if there's a treatment specifically designed for narcolepsy. 



#11 sk8aplexy

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Posted 27 April 2013 - 10:09 AM

I have Narcolepsy with Cataplexy and have been getting acupuncture with cupping each month or two, for maybe 6 months now, from an awesome Korean D.O.

I have other matters like arthritis and more.  I'm less comfortable with continuing the cupping, as often and have lessened having it done, as it is much more impactful and deep...

Definitely saw a benefit from doing what I've done from the point I began seeing him, that included basically a cleansing by eliminating both dairy and gluten which for the most part I remain doing (am not with Celiac disease but definitely have a sensitivity and am beginning to wonder if I have an allergy to dairy which has become much more apparent since the withdrawal of it)...

 

The point of this response though, is that the D.O. has never seemed to acknowledge Narcolepsy in a manner which is on point, he seems to refer to it more often as insomnia.

It seems though also, that he doesn't speak upon much in any of the standard ways they're discussed by normal doctors; and I know that is related to Western versus Eastern medicine/practice, to some extent.



#12 siesta girl

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Posted 09 March 2014 - 10:45 AM

I thought I would try to re-ignite a conversation about Accupuncture. I finally was able to afford to try it and although I do not think it can directly address Narcolepsy, it has helped with some of the symptoms. After most sessions (not all, but most), I sleep better at night, I actually feel good for a couple of days and I have definitely noticed a clarity and alertness for a few days. Sometimes, I actually feel truly present and engaged during conversations with people for a couple of days after a session. I still needed to take naps after sessions, but there is a bit of relief from the constant sleepiness and fog for a short time which has felt wonderful. I started once a week and am now to once a month. If I could afford it, I would go more often. By the way, I always fall asleep during the session once the needles are in place. It is a good nap too!

 

Right now my strategy is to lessen the narcolepsy symptoms as much as possible through diet (gluten, dairy & egg free), alternative therapies like accupuncture, exercise and Deplin (a medical food supplement which I did a post on). Otherwise, I tried Ritalin and it was so bad for me I did not want to waste my money, time or energy on any other drugs. Currently my job requires that I stand and move around all day, so that helps alot! At the end of the work day I am toast though.



#13 Dan7Gray

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Posted 11 March 2014 - 11:22 PM

I thought about trying Acupuncture but never got around to it. I'm curious about the dairy free & egg free diet though, what's the reasoning behind that? More so the egg free? I just read up on the dairy free and gonna try that, since dairy is bad for your bones anyways.



#14 siesta girl

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Posted 23 March 2014 - 11:24 AM

I thought about trying Acupuncture but never got around to it. I'm curious about the dairy free & egg free diet though, what's the reasoning behind that? More so the egg free? I just read up on the dairy free and gonna try that, since dairy is bad for your bones anyways.

 

 

I am not online often, so apologies for the late response. Before my diagnosis with Narcolepsy, I was working with a Naturopath trying to figure out why I was so tired. We did a food allergy test and those were my top reactions. It took me a year to really avoid them and when I brought them back in, the dairy would make me have a bit of insomnia at night. It seemed crazy, but it happened again and again when I would use milk in my coffee instead of a non-dairy substitute. I think the gluten just makes me tired. I don't know about what the eggs might do. I never really brought them back into my diet to find out as they were my highest reaction. None of these make me sick, but I think avoiding them helps reduce the strength of my narcolepsy symptoms. BTW - it was this Naturopath that suggested I have a sleep test, just to make sure I was sleeping at night - which, of course, how I ultimately got the Narcolepsy diagnosis.



#15 Ferret

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Posted 23 March 2014 - 12:36 PM

I thought about trying Acupuncture but never got around to it. I'm curious about the dairy free & egg free diet though, what's the reasoning behind that? More so the egg free? I just read up on the dairy free and gonna try that, since dairy is bad for your bones anyways.

 

I would really like to know where you heard that dairy is bad for your bones.

http://osteoporosis....loads/dairy.pdf

 

I can understand problems with those that are lactose intolerant...but there are a ton of dairy products that are lactose free OR you can pop a lactase pill before you consume it (but it doesn't work for everyone)

http://www.mayoclini...es/con-20027906

 

I love dairy and dairy products and always have. I have had a number of significant falls in my life but have never broken any bones. As a matter of fact, when I had my last bone density test done (when I was 55), they told me to come back when I was 100...I'm that dense...(pun intended).



#16 Dan7Gray

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Posted 26 March 2014 - 10:04 AM

http://www.scienceda...30201132336.htm

"specifically milk and yogurt -- is associated with higher bone mineral density (BMD) in the hip, but not the spine. Cream, on the other hand, may be associated with lower BMD overall. "

 

http://ajcn.nutritio...4/1066.full.pdf

Shows that dairy intake doesn't affect womens bone mineral density, but increases mens slightly.

 

Seems I was wrong, as there was more to the research and findings.



#17 ThreeDogTruck

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Posted 23 June 2014 - 03:36 PM

I'm currently studying acupuncture in China and we have learned a lot of diseases but to my disappointment, narcolepsy was never covered up in our studies. In fact, I told my professor about narcolepsy and she didn't even know the disease. My professor gave me one treatment but it was more of an improvised treatment, selecting acupoints that would fit the most to my symptoms. So I'm not sure if there's a treatment specifically designed for narcolepsy. 

 

Hi VSfan --

I found your post by doing a search on acupuncture --

Did you finish your training in China?

Did you learn anymore about using acupuncture to improve Narcolepsy or Excessive Daytime Sleepiness?

Thanks.