NetiNeti

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  1. They have a facebook page --- but Reddit might be a lot better honestly. https://www.reddit.com/r/Narcolepsy/
  2. @Pereise1 Here is my overall theory into why it works (minus the anti-inflammatory and glucose regulation stuff) and what I do: @Jacky I'll check it out, but I am hesitant.
  3. @Pereise1 Thanks for the feedback. I will look into Feverfew. I've been using it so long not (intermittently) I haven't really questioned it much. I would defiantly recommend fasting. The first 3-6 months are the hardest as your body learns to adjust to the new way of eating. Now its completely fine. That plus a lower carb diet have been game changers.
  4. Just read most of this --- fascinating stuff guys. I have posted about my personal "trial" on this forum into intermittent fasting the last 3 or so years of my life. It has been a game changer. I don't know all of the mechanisms behind it though, only theories. The histamine stuff is very interesting. On my bad nights when I can't fall asleep (which is always odd) I often take a benadryl. Sometimes I have a hangover effect, but often it works pretty well and I wake up feeling rested. Edit: Walking 30 - 40 min in the afternoon has worked wonders well. I get a lot of light in then which helps reset my clock. Most of my day is spent in an office which doesn't help with the whole "natural lighting" thing.
  5. I usually wait an hour after I wake up to take it. I have experimented with taking it earlier. If I take it and fall back to sleep I wake up like you did. But if I take it right when I wake up, it makes me feel agitated most of the day.
  6. You can buy it, but I think it gets absorbed by the intestines and does not cross the blood brain barrier.
  7. @Jasonm @HBr @DeathRabbit --- Thanks for your imput. At first glance it looked a bit too polished --- but reading some of her stuff it seems legit. IDK, I am always wary of overblown health claims with individuals who have chronic conditions like us. I think its because I believe so much in diet and exercise, but I see the limits of it given my own condition. Now, I would be A LOT worse if I wasn't so adminet about it. I'm just ranting now. Just never heard of her. IDK, she looks kinda legit.
  8. Has anyone heard of her? It seems like she is trying to sell something, but it is a lot of the dietary and lifestyle changes we talk about on here. http://madcapnarcolepsy.com/
  9. @devoted101 I've been fasting for 3 years now. It's been great. The first few months were hard, but its been by far one of the best things I have done. I was hearing about it on the radio a lot and decided to read the studies behind it. It was only on a whim that I postulated it could potentially be beneficial for my narcoleptic symptoms. It wasn't an overnight change. @Braden Met with my doctor today and decided against the Xyrem for now. My subjective sleep questionnaire answers have been dropping the last few years apparently. While I still have days of extreme EDS a few times a month, overall it appears my current treatment plan is working quite well.
  10. @Jasonm @sleepybodybuilder Intermittant fasting and carb cycling are game changers. I've slowly taught my body to manage with less carbs over the last 2-3 years. 50 grams to 100 grams most days now and other days I usually don't go over 200 grams. When I take Nuvigil in the fasted state it does seem to accelerate the time table. I get super grumpy, angry, agitated, etc. around 11:30 am (14 hours or so fasting). It has to be hypoglycemia symptoms before the "use your fat as energy" signal kicks in. When I don't take nuvigil my body can usually manage well for another 2 hours before those symptoms occur. I never thought about it before I read your experiences though. When I see my sleep doctor this week and ask about xyrem im going to ask him to decrease the nuvigil dose. We had to go to a higher dose for insurance reasons.....it was cheaper at a higher dose, but it is not anymore effective for me and I am experiencing more negative side effects from it.
  11. @DeathRabbit From what I know, I would start with the N-Acetyl-L-Tyrosine (NALT), Yohimbe, or Yerba Mate. Each can have stimulant like effects and help with fatigue. Especially the last two -- .
  12. Good news! When this happened to Nuvigil last year I was like "YESS!!!" These drug companies....
  13. @Jasonm Yes! Forgot to include that. I've been a vegetarian for 13 years. I changed my diet when my symptoms first started to manifest. At the time I had no idea what was going on with me and I think that becoming a vegetarian (partly) was an attempt to alleviate my chronic fatigue...before I even knew what that was. While I don't think being a vegetarian would help (or hurt) the symptoms of being a narcoleptic, I have stuck to the diet because I like it. It also has other health benefits, but a lot of these can be gained from reducing meat consumption generally. I will say that reducing carbohydrate consumption and becoming more "fat adopted" created more of a change in my narcoleptic symptoms than becoming vegetarian did. I do take creatine, but I'm not as consistent with it. I also low dose it (under 0.3 grams) The science suggests that the loading phase is not needed now, but it doesn't hurt. It was just adopted from these studies and formulated into bro science, haha.
  14. @Braden Thanks for the feedback. College and graduate school was really hard for me too. It was prior to my formal diagnosis (at age 24). I am considering Xyrem. I am aware of the problem with stimulants which is why I routinely cycle off of them. Then they work great for a while, until they do what you describe again. The behavioral intervention of intermittent fasting has changed a lot about my sleep timing (and even decreasing my sleep attacks) already. I now naturally get sleepy at night around the same time (give or take 30 mins) and wake up roughly the same time every morning. I never did that in college or graduate school when my symptoms were really taking off. However, my sleep remains fragmented of course. Some nights are better than others, but Xyrem might just be the cherry on top. Rarely do I wake up with that "refreshed" feeling and I still have the chronic fatigue. However, I don't think I have ever really had any negative strength effects --- oddly enough. I've always been (pound for pound) one of the strongest people in various gyms I've been in. I rarely get injuries and heal quite well if I ever do. It's been one of my protective factors. I don't know how this is possible though. Maybe I have a higher athletic baseline or maybe growth hormones are somehow not as diminished in my particular case.
  15. I have Narcolepsy w/o Cataplexy. I have tested negative for any genetic inheritance, but this is not definite. I will outline my general approach to treating my narcolepsy. I won’t go into too much detail --- that would take too long. But hopefully this will be just enough to get a lot of people started /looking into changes for their self. I try to do preventative measures as much as possible. This is mostly diet and exercise. I know, it seems mundane. But as a healthcare provider (psychotherapist), I cannot stress how important it is. I would be a hypocrite if I told my patients these things and never did them myself. Diet One of the biggest things I changed was starting intermittent fasting. I explained a lot of the science behind it in this post (http://forums.narcolepsynetwork.org/index.php?/topic/5876-intermittent-fasting-and-narcolepsy/). I talked about the Suprachiasmatic nucleus (SCN) in my original post, so there is some error there. It’s located in the hypothalamus however and there is input between it and the lateral hypothalamus (https://www.ncbi.nlm.nih.gov/pubmed/11340621) Basically with Narcolepsy, it is postulated that we have a dysfunction in the Lateral hypothalamus. This controls a lot of different functions which when deregulated lead to primary and then secondary down chain events. We can’t do anything about “fixing” the main clock. Those neurons are dead. But we have peripheral clocks. These clocks are in your digestive track, your cells, your microbiome, etc. We can regulate these clocks through diet and exercise to give them the “correct time” --- which apparently also helps feed back into the primary clock(s). It gets a lot more complicated than that --- but that’s the gist. Intermittent fasting has a host of other health effects. I fast for 14-16 hours a day 6 to 7 days a week. It has been the best thing by far to help my other body clocks make up for our centrally disturbed one. For women, the fasting window is typically less. It took me months to adjust to intermittent fasting. I would start here first though. The second thing I adhere to is a high protein, high fat diet with low carbohydrates. The high fats and protein keep me satiated and prevent crazy metabolism changes. Keeping carbohydrates low has been great for regulating dietary energy fluctuations. Simple carbohydrates have been (historically) the worst for triggering sleep attacks. I generally stay between 50 grams to 100 grams of carbohydrates a day. 200 grams on my “whatever” days. This dietary drop in carbohydrates took about 6 months to completely change and adhere to. Your body will fight against it at first, especially if you are used to eating a lot of carbohydrates for quick energy. I know a lot of narcoleptics have this problem and I did as well. Some people have advocated for a ketogenic diet. While I agree with the general principles regarding this diet, I think continuing on this diet long term does not promote metabolic flexibility. Exercise I work out 3-5 times a week. Mostly strength training. This can be a post in itself. A lot goes into exercising. Strength training helps me with sleep onset a lot --- and staying asleep. A lot of cardio exercise does seem to disrupt my sleep onset time and can lead to more fragmented sleep. When it doesn’t it greatly reduces my EDS the next day. I think this is a timing issue of the exercise more than a cardio issue itself (I generally workout in the afternoon). Medications I have so far only utilized the stimulants. I will change this if I do attempt any of the GABA agents (Xyrem or Baclefon). I was originally prescribed Methylphenidate (5mg as needed). I quickly grew a tolerance and its short half-life led to stronger sleep attacks. I’ve been on Armodafinil for a few years now. I don’t use it daily (3-4 days a week, usually taking a day or two off between uses). Supplements So far, only a few things have worked. I am wary of supplements due to a lot of the overblown claims. But a few have proved useful to me: 1. Caffeine (3 – 5 days a week; 1-3 cups) 2. Panax Ginseng (2 – 3 days a week --- 200 to 400mg ) 3. Alpha GPC (3-5 days a week --- 300-600 mg ) 4. Acetyl-L Carnitine (My original post here: http://forums.narcolepsynetwork.org/index.php?/topic/5366-ral-l-carnitine/) I usually alternate these as well. For example, I use the Caffeine, Alpha GPC, and Ginsing on my “off” Armodafinil days. I use Acetyl-L Carnitine almost every day. If you want additional information, I strongly recommend Examine.com for scientific references. ….. all of that and a little bit of luck make narcolepsy treatable for me. All of this works MOST of the time. There are days where even if I do everything right, none if it works. This has been years of work for me --- trial and error. And this is just the gist. I didn’t go too much into details. It may not work for you. We are all different. But at least it’s a starting point. Take what you can, if anything and see if it works for you. You have more autonomy than you know. Don’t give up on living.