tag:blogger.com,1999:blog-64700562954178636272024-03-12T22:07:25.200-04:00Planet NarcolepsyFounder's Corner - All business, all the time.Planet Narcolepsyhttp://www.blogger.com/profile/15071615406245456510noreply@blogger.comBlogger27125tag:blogger.com,1999:blog-6470056295417863627.post-32439013483377912912011-08-15T23:45:00.001-04:002011-08-15T23:45:18.594-04:00Do men with narcolepsy have major intimacy issues?<p class="formspringmeAnswer">That is an excellent question...and a difficult one to answer. Not knowing what perspective you are coming from (the man, a girlfriend) or what you mean specifically by "intimacy issues," I will answer as best as I can.<br /><br />To be fair, men with narcolepsy do not have any more problems with intimacy than women with narcolepsy do. Narcolepsy itself does not affect the ability to connect with another person mentally or physically.<br /><br />On the other hand, certain aspects of living with narcolepsy can absolutely affect the way we handle relationships and deal with a partner.<br /><br />For one, having narcolepsy means not getting the sleep you need. Anyone who has ever been overtired and in need if sleep knows it makes you cranky, irritable, and pretty much like you just want to be alone with a blankie and your pillow. For people who don't have a sleep disorder, that moodiness generally goes away once you get the sleep you need. With narcolepsy, that never happens. It is often hard for us to be relaxed and truly enjoy company when we are always so tired.<br /><br />Secondly, we know we are acting nuts! We feel guilty when we can't control our snippy outbursts, and we feel guilty we can't be the peppy, awake, happy, spontaneous people our friends deserve to hang out with.<br /><br />For men, this can be especially difficult ultimate, because we still live in a society that raises boys to believe they are ultimately supposed to be the caretakers in the relationship. Many get very down when they feel like they can't provide for their significant other, whether financially or otherwise.<br /><br />Also, being chronically ill means many of us have been burned badly by people we trusted to support and love us unconditionally. It is extremely hard to trust another person and allow yourself to get close to someone when you have been called lazy and useless by family members and friends, or had doctors brush you off when they thought you were exaggerating. <br /><br />So there is a lot of plain emotional baggage that comes with narcolepsy, aside from any separate personal issues someone might bring to a relationship.<br /><br />As for physical relations, men especially may be hesitant for a couple of reasons. One, cataplexy (loss of muscle control) is generally triggered by strong emotion, and what is stronger than love? Many men have their first experience with cataplexy during an orgasm. It's an awful lot of pressure to want to please your partner, enjoy yourself, and hope you don't/ try not to collapse on top of her! <br /><br />Finally,although I have not read anything scientific or anecdotal about this, there is a slight possibility the condition or medications can cause, asked from lack of libido, Ed. I mention it as a possibility merely because the part of the brain that is destroyed in narcolepsy also has a role in blood pressure, not to mention the stimulants prescribed for narcolepsy can also mess with blood pressure, so that could be an issue.<br /><br />The best thing to do in a relationship is always to talk to your partner, be direct and honest, and don't be afraid to seek professional help for any of the problems I've mentioned. Counseling is a good way to help open up and learn communication, and knowing you cafree enough to try is always a good signal to someone who is hesitant.</p><p class="formspringmeFooter"> <a href="http://www.formspring.me/PlanetN?utm_medium=social&utm_source=blogger&utm_campaign=shareanswer">Ask me anything</a></p>Planet Narcolepsyhttp://www.blogger.com/profile/15071615406245456510noreply@blogger.com5tag:blogger.com,1999:blog-6470056295417863627.post-45541014398871569772011-04-29T13:00:00.001-04:002011-04-29T13:00:40.494-04:00formspring.meAsk me anything <a href="http://formspring.me/PlanetN" target="_blank">http://formspring.me/PlanetN</a>Planet Narcolepsyhttp://www.blogger.com/profile/15071615406245456510noreply@blogger.com1tag:blogger.com,1999:blog-6470056295417863627.post-19090649594335710992011-04-12T12:43:00.001-04:002011-04-12T12:43:10.915-04:00formspring.meAsk me anything <a href="http://formspring.me/PlanetN" target="_blank">http://formspring.me/PlanetN</a>Planet Narcolepsyhttp://www.blogger.com/profile/15071615406245456510noreply@blogger.com2tag:blogger.com,1999:blog-6470056295417863627.post-34167605307836542892011-03-27T11:20:00.001-04:002011-03-27T11:20:52.888-04:00I was diagnosed with narcolepsy when I was 17, about 8-9 years ago.My question's about lucid dreaming. While I experience sleep paralysis (as well as cataplexy), I can't seem to get an answer on whether lucid dreaming and sleep paralysis are related.<p class="formspringmeAnswer">Technically, they are related by their mere nature, although I believe the answer to what you are really asking is - they can be.<br /><br />Sleep paralysis occurs immediately before sleep or immediately upon "waking." It is the same thing as cataplexy, but at a different time under slightly different circumstances. Both are incidents of the body using the mechanism that paralyzes us so we don't act out our dreams at the wrong time. It sounds like you know this.<br /><br />Most people without narcolepsy associate "lucid dreaming" with dreams in which the setting and actions are just like day to day life, they know they are dreaming, and they can often dictate the direction of the dream. "Inception" is entirely about lucid dreaming.<br /><br />By extension, the hallucinations we people with narcolepsy often experience are also lucid dreaming. It is also known as "waking dreams" or "daymares," and most often occurs in conjunction with sleep paralysis. <br /><br />We know we are "awake" and aware of our environment, when we see or hear things, we know they aren't real, but we can still interact with them. Thus, by definition, a lucid dream.<br /><br />Now, especially when it comes to people with narcolepsy, one does not have to be experiencing a lucid dream to have sleep paralysis, nor does one have to have sleep paralysis to experience a lucid dream. Many of us have stories of seeing people and things that aren't there during the "normal" course of our day.<br /><br />I suppose some people might argue the difference between hallucinations and dreaming, but in our case, the hallucinations are the intrusion of REM, dream, sleep during waking hours, thus making them the same.<br /><br />I hope that made sense and answered your question. If not, feel free to ask again, and happy napping!</p><p class="formspringmeFooter"> <a href="http://www.formspring.me/PlanetN?utm_medium=social&utm_source=blogger&utm_campaign=shareanswer">Ask me anything</a></p>Planet Narcolepsyhttp://www.blogger.com/profile/15071615406245456510noreply@blogger.com0tag:blogger.com,1999:blog-6470056295417863627.post-50898694313114135462011-03-22T12:41:00.001-04:002011-03-22T12:41:15.388-04:00hi im paul from cannock england im 45 and have been diagnosed with the curse that is narcalepsy . at the moment im on modafinal and dex amphetamine. the modafinal dont seem to do anything for me but the dex do . trouble is im having to eat about 70 a day<p class="formspringmeAnswer">Hi, Paul! I have heard a lot of people complain that the modafinil (Provigil, for anyone reading this who doesn't know) either doesn't work at all or stops working after a very brief period of time. For me, it was great...for about two days. Then it did almost nothing without long "drug holidays" in between. It also gave me severe headaches, so eventually I stopped that.<br /><br />I personally have never tried dex. All of the stimulants I have tried give me migraines. Once side effects from the migraine medication I took became too much, I stopped taking both and now try to manage my narcolepsy medicine free. It is difficult, but I am fortunate enough to be on the milder side of the spectrum and also in a position to be able to sleep when I need to and work when I can. When I tried to fit into a normal 9-5 job, the results were pretty disastrous.<br /><br />I'm not sure what your question might be, but if you are looking for treatment suggestions, I can tell you there are still more options. Nuvigil (armodafinil) is supposed to be a longer-acting form of Provigil, and some people who have had no luck with the latter due report some help from Nuvigil. Mixed with a shorter-acting drug like the dex or Ritalin, that may be one option. Unfortunately, as with those who use these drugs recreationally, it is common for a point to come when higher and higher doses are needed. It is not unusual for people with narcolepsy to go far beyond "normal" dosing over a fairly short period. One thing that may help is talking to your doctor about "drug holidays," days or weeks you can stop taking your medicine (make sure you are able to sleep all day and don't have to be anywhere) so that when you take it again, it seems to work.<br /><br />There is also Xyrem, which I understand is difficult to be approved for in England, but it can be done. Although it is not a stimulant, it is the only thing that has been proven so far to improve nighttime sleep, which leads to much better days for some people. Xyrem, however, has a lot of side effects and is certainly not for everyone.<br /><br />Make sure to talk to your doctor about how you feel your treatment is going, and I suggest joining online or in person support groups where you can talk to more people who understand exactly what you are going through. I am on Facebook (<a href="http://www.facebook.com/planetnarcolepsy" target="_blank" rel="nofollow" class="nofollow">http://www.facebook.com/planetnarcolepsy</a>) and we have an independent site, www.planetnarcolepsy.com. I also highly recommend the Narcolepsy group at dailystrength.org. That is where I first talked to other people with narcolepsy and consider them all family.<br /><br />If there is anything else you'd like to know, please write again, and I wish you luck in your struggle with this awful condition.<br /><br />-Jessica</p><p class="formspringmeFooter"> <a href="http://www.formspring.me/PlanetN?utm_medium=social&utm_source=blogger&utm_campaign=shareanswer">Ask me anything</a></p>Planet Narcolepsyhttp://www.blogger.com/profile/15071615406245456510noreply@blogger.com3tag:blogger.com,1999:blog-6470056295417863627.post-69735592626823961762011-02-15T12:27:00.001-05:002011-02-15T12:27:34.328-05:00I was diagnosed with narcolepsy and it's horrible.I've been on concerta but it doesn't work. I'm still always sleepy and I fall asleep all the time. I just wanted to ask.Will I ever have a normal life again where I can stay awake and alert the whole day?<p class="formspringmeAnswer">I'm sorry, I don't know when you asked this question (my alert emails seem to get lost in the shuffle sometimes), so I don't know if anything has changed since you posted it.<br /><br />I will try to do this as gently and honestly as possible...<br /><br />No. It is not likely you will ever have a "normal" life again. Even if you find a medication regimen that works amazingly well and keeps you awake all day, it would be extremely unusual to not have lasting effects from past sleep deprivation (after even a short period of time, the body stops bothering to try to catch up on a sleep deficit. So years of sub-par sleep are practically impossible to reverse), and not only do the medications we require have pretty crazy side effects (weight loss, seizures, dental problems, irritability, insomnia), but they are of a type that typically lead to tolerance in every patient at some point...whether within weeks or years. <br /><br />On the other hand, the positives are this: with proper management, you CAN live a happy, fulfilling life, and you can certainly do everything a "normal" person can do...you just have fewer hours in the day to do it and often have to make some changes to how you do it. For instance, 9-5 jobs tend to be very difficult, but a split shift, second shift, or something you can work from home is usually feasible. Lunch hours tend to be nap hours. Coffee is literally a necessity, not an option, even though others pretend they NEED it. And we have to learn to accept that we can't always go out on Friday night if we want to enjoy our weekend...but with understanding of our symptoms and what makes them worse, we can plan for them.<br /><br />Also, there is a LOT more research being done on Narcolepsy and treatments. For many people, Xyrem has been a miracle drug. And there are so many combinations of other stimulants out there, you could mix it up for years before finding the right one. I know that doesn't sound reassuring, but allow me to explain a little:<br /><br />The first time I had medication, it was AMAZING. It was like "OMG, so THIS is what awake feels like?" I realized I never had experienced it. Within a few days, I settled into something slightly less amazing, and within weeks felt worse than I had before. Then I realized that not only was I more aware of my body and my levels of fatigue because of the research and learning I was doing, but there was now a bigger gap between what a "good" day felt like and what a "bad" day felt like. So I wasn't actually feel worse, I just SEEMED worse because of that new "high" I had to compare it to.<br /><br />I tried several medications, and many people do. There are different brands, different formulas, different strengths. You may need to mix a short acting pill with a long-acting pill for maximum benefit. You may need a sleeping pill on top of a stimulant during the day. You may need to experiment with when to take each dose. Often times, we require a much higher dosage of stimulants than is recommended for other conditions, and doctors will be very cautious about getting to that point. One option (talk to your doctor) is an occasional drug holiday. Don't take your pills for a weekend (with doc's permission) and see if you feel a little better when you finally take them on Monday. <br /><br />Be sure that you trust your doctor and feel that he or she listens to you. It can be a real wear on you emotionally and physically to feel like he or she is not "getting it" or trying to help. <br /><br />Also, don't try to compare yourself to "normal" people. You were a unique individual before you found out you had N, and you are a unique individual now. You have to strive toward your own goals and your own happiness, not someone else's.<br /><br />If you ever need to vent, you know where to find me!<br />I hope you begin to feel much better soon.</p><p class="formspringmeFooter"> <a href="http://www.formspring.me/PlanetN?utm_medium=social&utm_source=blogger&utm_campaign=shareanswer">Ask me anything</a></p>Planet Narcolepsyhttp://www.blogger.com/profile/15071615406245456510noreply@blogger.com1tag:blogger.com,1999:blog-6470056295417863627.post-82215223948978066002011-02-15T12:12:00.001-05:002011-02-15T12:12:23.985-05:00I am also suffering from narcolepsy. My main prob is not to be able to wake up and to be unconcious about for one or two hours after waking up. So I am being late everywhere and oftenly I fall a sleep after waking up. Do you have any advice<p class="formspringmeAnswer">Well, as you can probably tell, you're not the only who is late! (I really have to find out what is happening with my formspring e-mails!)<br /><br />It is quite common for first thing to be one of the most difficult times for us narcoleptics. I personally find it VERY difficult to get myself into anything resembling "awake" and stay there.<br /><br />I can offer some tips, but unfortunately, they usually tend to be hit or miss depending on the person and their individual symptoms.<br /><br />First off, and I ALWAYS say this...stick to a routine. To bed at the same time every night (even if you don't feel ready), and up at the same time every day, even weekends. Your body will get used to the routine and eventually it definitely begins to wake at the right time, even if it is still difficult.<br /><br />Secondly, practice other good sleep hygiene...no eating within a few hours of bed, no computer within two hours before bed (messes with melatonin production), no eating, tv watching, or other "non-sleep" activities in bed. That's probably the hardest.<br /><br />Third, try setting a few alarms. They have loud ones, vibrating ones, singing ones, talking ones, bright ones...hopefully one out there will be enough to wake you. Set one every half hour (or set a snooze time if it allows) starting BEFORE you have to be up. <br /><br />You can also try leaving your shades open or ask someone to come open them in the morning. The sun actually DOES help you wake up, and it will affect you even if you are awake yet to see it.<br /><br />Sometimes, for me, it is a matter of forcing myself out of bed and away from it, even if I don't feel ready. It's much harder (though not impossible) to fall asleep when walking around the house or doing simple chores (no one will be hurt if the dishes end up put away in the freezer, but the action may help you get going).<br /><br />If you take medication, set an alarm for about an hour before you get up. Take your medication, then go back to sleep for a bit. It will give the medication time to get into your system. <br /><br />Sometimes, taking a shorter acting med in the morning, like Ritalin, can give you enough of a boost to get started, and then you can take an extended release formula when you get up to help you through the day.<br /><br />Also, try scheduling appointments during what is usually your most awake portion of the day. For me, this is usually between about 11 and 3. I still have a tendency to lose time and be a little late, but not nearly as late as if I schedule outside of those times.<br /><br />Try explaining this condition to doctors and other places you may need to be. Let them know you are not trying to be disrespectful, that you understand their time is valuable and you do not expect them to be happy about it, but you try your best. Call as soon as you know you will be late. At a doctor's office, this may mean they can take the next patient before you get there, so you can still be seen. If you have the time, ask them if they may be able to squeeze you in if you are willing to wait, and don't be difficult about rescheduling if necessary. Even if the reason you are late is not something you can control, being late is still YOU, and you can't act like it was someone else and you haven't affected other people's schedules. <br /><br />If you have school, go for later, shorter classes.<br /><br />As for someone to call you to make sure you are up.<br /><br />Coffee!<br /><br />Patience and acceptance: you can get things manageable with patience and research. Talk to other PWN like me who know what you are going through. It takes a long time, but accept your limitations and work within them...you may find it actually expands your ability to do other things sometimes. Try to learn to say no and not feel guilty. We, as human beings, can't do and participate in everythiing, and we definitely can't with a disease like narcolepsy. True friends will make an effort to understand.<br /><br />I wish you luck, and if you think of other tips on your own, please be sure to let me know so I can share them with others!</p><p class="formspringmeFooter"> <a href="http://www.formspring.me/PlanetN?utm_medium=social&utm_source=blogger&utm_campaign=shareanswer">Ask me anything</a></p>Planet Narcolepsyhttp://www.blogger.com/profile/15071615406245456510noreply@blogger.com3tag:blogger.com,1999:blog-6470056295417863627.post-10866354609958902622011-02-15T11:47:00.000-05:002011-02-15T11:47:01.178-05:0040 Tops Blogs for Insomniacs<div dir="ltr" style="text-align: left;" trbidi="on">Just a short note to let you know Ms. Paula Dierkins has listed us in her Top 40 Blogs for Insomniacs! Check it out for yourself by clicking on the title above.</div>Planet Narcolepsyhttp://www.blogger.com/profile/15071615406245456510noreply@blogger.com0tag:blogger.com,1999:blog-6470056295417863627.post-68757327119828462662010-12-15T12:11:00.000-05:002010-12-15T12:11:11.622-05:00New Links at Planet Narcolepsy.comJust a quick line to let you know a ton of new blog and article feeds have been posted over at Planet Narcolepsy.<br />
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YOU MUST BE A REGISTERED MEMBER TO ACCESS THIS LIST.<br />
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Once you register and login, click "Feeds" in the menu to the right of the screen. Enjoy posts by patients with Narcolepsy, articles from the Academy of Sleep Medicine, and even a regularly updated Google search for the keyword "narcolepsy."<br />
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More to come...ENJOY!Planet Narcolepsyhttp://www.blogger.com/profile/15071615406245456510noreply@blogger.com1tag:blogger.com,1999:blog-6470056295417863627.post-89352426191481212122010-12-08T12:38:00.001-05:002010-12-08T12:38:00.540-05:00They did do 4 naps total on me on wed/thurs. sorry sleepy when I typed<p class="formspringmeAnswer">That's ok. Knowing that, it appears you had a standard nap test, and I would be very surprised if you were not diagnosed with Narcolepsy.<br /><br />Hopefully you will be able to review your results with your doctor soon and begin treatment. Good luck!</p><p class="formspringmeFooter"> <a href="http://formspring.me/PlanetN?utm_medium=social&utm_source=blogger&utm_campaign=shareanswer">Ask me anything</a></p>Planet Narcolepsyhttp://www.blogger.com/profile/15071615406245456510noreply@blogger.com0tag:blogger.com,1999:blog-6470056295417863627.post-18721555402035842292010-12-05T10:23:00.001-05:002010-12-05T10:23:05.367-05:00formspring.meAsk me anything <a href="http://formspring.me/PlanetN" target="_blank">http://formspring.me/PlanetN</a>Planet Narcolepsyhttp://www.blogger.com/profile/15071615406245456510noreply@blogger.com0tag:blogger.com,1999:blog-6470056295417863627.post-57176251335919319832010-12-05T10:22:00.001-05:002010-12-05T10:22:50.595-05:00Just did my multiple sleep latency test on Wed/thurs. After 1st nap,I was not even sure I fell asleep, 2nd nap,dreamed my crazy dreams (for some reason after that, they did a drug test on me) then they said one more nap was all they needed.???????<p class="formspringmeAnswer">It is not unusual for those of us with Narcolepsy or other REM Sleep Disorders to believe we are awake when we are actually asleep. EEG studies often show increased "awake" brain activity at times the rest of the brain is clearly outputting "sleep" wave activity. We're special...we literally get to be awake and asleep at the same time.<br /><br />It is odd that they would only do two naps, as it is usually 4-5 depending on whether or not you actually fall asleep and the information they are able to record. In your case, you say you dreamed, which means you did go into REM level sleep in a short period, which is a classic indication of Narcolepsy.<br /><br />Since the official criteria to diagnose Narcolepsy through an MSLT states two or more incidents of REM during the naps is highly indicative of the condition, your center may only require two positive naps and have assumed you would have a second.<br /><br />As for drug testing, it's not something I necessarily agree with, but symptoms of narcolepsy are also symptoms of using certain recreational substances. While it does not feel good to get the impression your doctors don't believe you or trust you, they must also protect themselves and you and rule out every possibility.<br /><br />Please let us know what happens when your results are in, and best of luck to you!</p><p class="formspringmeFooter"> <a href="http://formspring.me/PlanetN?utm_medium=social&utm_source=blogger&utm_campaign=shareanswer">Ask me anything</a></p>Planet Narcolepsyhttp://www.blogger.com/profile/15071615406245456510noreply@blogger.com1tag:blogger.com,1999:blog-6470056295417863627.post-7171445028655618782010-11-07T22:16:00.001-05:002010-11-07T22:16:08.256-05:00formspring.meAsk me anything <a href="http://formspring.me/PlanetN" target="_blank">http://formspring.me/PlanetN</a>Planet Narcolepsyhttp://www.blogger.com/profile/15071615406245456510noreply@blogger.com1tag:blogger.com,1999:blog-6470056295417863627.post-3918275897383634222010-11-07T22:15:00.001-05:002010-11-07T22:15:58.501-05:00Five things you're horrible at:<p class="formspringmeAnswer">1) Sleep<br />2) Patience<br />3) Drawing (my stick figures are bad!)<br />4) Being Assertive<br />5) Sleep</p><p class="formspringmeFooter"> <a href="http://formspring.me/PlanetN?utm_medium=social&utm_source=blogger&utm_campaign=shareanswer">Ask me anything</a></p>Planet Narcolepsyhttp://www.blogger.com/profile/15071615406245456510noreply@blogger.com0tag:blogger.com,1999:blog-6470056295417863627.post-54409169908586521652010-10-22T19:03:00.003-04:002010-10-22T19:03:26.866-04:00formspring.meAsk me anything <a href="http://formspring.me/PlanetN" target="_blank">http://formspring.me/PlanetN</a>Planet Narcolepsyhttp://www.blogger.com/profile/15071615406245456510noreply@blogger.com0tag:blogger.com,1999:blog-6470056295417863627.post-41485792144260844192010-10-22T19:03:00.001-04:002010-10-22T19:03:14.292-04:00I have memory issues, my feeling is that it is from my Narcolepsy...But hard to find an answer to this. Doc says yeah possibly but doesnt understand. Lack of memory harms my life nearly as much at the narcolepsy itself. Need help, advise, anything!<p class="formspringmeAnswer">It is not only possible that Narcolepsy is causing problems with your memory, it is highly likely. <br /><br />Memory loss and problems with cognitive function are two of the most common symptoms of sleep deprivation, which is essentially the core of our condition.<br /><br />We don't have a fancy name for it, but patients with Fibromyalgia often refer to the "Fibro Fog," which seems to be very similar to what we experience: a general confusion, foggy feeling, like your whole brain never quite wakes up.<br /><br />I think your question is really what can you do about it? Unfortunately, there is no easy answer to that. Some people find it helps to write things down. I personally advocate having the best sleep hygiene possible and sticking to a routine.<br /><br />No matter what you do, try to talk to people who DO understand. You can join Planet Narcolepsy on Facebook (facebook.com/planetnarcolepsy), or I also recommend DailyStrength.org<br /><br />Good luck, and please contact me anytime!</p><p class="formspringmeFooter"> <a href="http://formspring.me/PlanetN?utm_medium=social&utm_source=blogger&utm_campaign=shareanswer">Ask me anything</a></p>Planet Narcolepsyhttp://www.blogger.com/profile/15071615406245456510noreply@blogger.com1tag:blogger.com,1999:blog-6470056295417863627.post-47475249258888713262010-10-11T16:10:00.000-04:002010-10-11T16:10:37.253-04:00Looking for ContributorsAs you know, Planet Narcolepsy is always looking for contributions to the website. If you know anyone who might be interested in blogging for us, being a Twitterbug, or expanding our social media network on behalf of Narcolepsy Awareness and Education, please have him or her email us at admin@planetnarcolepsy.com.<br />
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Maybe your friends and family don't want to be involved with Narcolepsy. Maybe they have other conditions they worry about.<br />
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That's okay too! Planet Narcolepsy is pleased to announce that we have registered a second domain - AwarenessMatters.org Currently the page is under construction, and it will continue to be as long as it takes, but we'd like to roll it out soon, if we can get the manpower behind it.<br />
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Our slogan is "Awareness Matters." And it does, but not just for those of us with Narcolepsy. It's amazing how many other conditions, some closely linked to Narcolepsy, do not get the attention they deserve and leave people suffering, un- or mis- diagnosed for years, lonely and misunderstood, and often ridiculed for "invisible" diseases and disabilities.<br />
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Expanding on our theme of bringing together patients with supporters, medical professionals, and education, Awareness Matters will feature areas on medical conditions with similar stigmas to Narcolepsy. A few we've already considered are:<br />
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Inflammatory Bowel Diseases (Crohn's, Ulcerative Colitis, etc.)<br />
Eosinophilic Conditions<br />
Lupus<br />
Fibromyalgia<br />
Multiple Sclerosis<br />
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Many of these are autoimmune conditions, and the overall topic of autoimmune clusters is a goal to be addressed as well.<br />
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I need people to "man" these sections as moderators, bloggers, researchers, and marketers. I cannot do it alone! If you or someone you know is interested, please email admin@planetnarcolepsy.com for more information, and don't hesitate to share your ideas on content or other conditions to feature.<br />
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There are only a couple of "requirements" (I'm flexible) for any topic to be assigned its own section:<br />
*The condition must be considered "rare" (rarediseases.org has an extensive but not all-inclusive list. If the topic is part of NORD's list, it is automatically accepted)<br />
*There must not be any well-known, national groups or campaigns associated with the condition (NarNet is not well-known among non-narcoleptics, but the American Cancer Society is common knowledge to people who don't have cancer)<br />
*There must be some sort of hurdle in obtaining diagnosis (a highly specialized test, a similar and often misdiagnosed condition (like epilepsy for us)<br />
*There must be little or limited knowledge in the medical community at large<br />
*Average time to diagnosis should exceed 2 years<br />
*Funding for research must be minimal or nonexistent<br />
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I hope to hear from many of you and look forward to working together.Planet Narcolepsyhttp://www.blogger.com/profile/15071615406245456510noreply@blogger.com7tag:blogger.com,1999:blog-6470056295417863627.post-49949170374090785812010-10-11T15:53:00.000-04:002010-10-11T15:53:11.136-04:00Use Sleep to Prevent Breast CancerClick on the title above for a special Breast Cancer Awareness Month article from Jessica at Examiner.comPlanet Narcolepsyhttp://www.blogger.com/profile/15071615406245456510noreply@blogger.com0tag:blogger.com,1999:blog-6470056295417863627.post-64426298327762361982010-10-03T16:35:00.001-04:002010-10-03T16:35:33.099-04:00Scary Symptoms of Sleep DeprivationClick the title above to read Jessica's latest article on Examiner.comPlanet Narcolepsyhttp://www.blogger.com/profile/15071615406245456510noreply@blogger.com0tag:blogger.com,1999:blog-6470056295417863627.post-35033043045498267662010-08-24T14:49:00.000-04:002010-10-03T14:50:30.577-04:00More Sleep Disorder Sufferers than Flu SufferersClick on this post's title for another Examiner.com article by Jessica.Planet Narcolepsyhttp://www.blogger.com/profile/15071615406245456510noreply@blogger.com0tag:blogger.com,1999:blog-6470056295417863627.post-27292207032413268332010-08-11T14:48:00.000-04:002010-10-03T14:48:40.389-04:00For the Love of NapsClick on the title above for Jessica's article on Examiner.comPlanet Narcolepsyhttp://www.blogger.com/profile/15071615406245456510noreply@blogger.com0tag:blogger.com,1999:blog-6470056295417863627.post-49286834683066780712010-08-02T14:46:00.000-04:002010-10-03T14:47:22.004-04:00Can't sleep? Turn off the lights!Click on the title above for Jessica's latest Examiner.com article.Planet Narcolepsyhttp://www.blogger.com/profile/15071615406245456510noreply@blogger.com0tag:blogger.com,1999:blog-6470056295417863627.post-85884612282911898112010-07-28T14:44:00.000-04:002010-10-03T14:45:58.566-04:00Sleeping Better on Hot NightsClick on the title above to view an article by Jessica at Examiner.comPlanet Narcolepsyhttp://www.blogger.com/profile/15071615406245456510noreply@blogger.com0tag:blogger.com,1999:blog-6470056295417863627.post-72370556878501868602010-07-09T14:11:00.000-04:002010-07-09T14:11:52.913-04:00Narcolepsy was EnoughIt appears I haven't written in about a month. I'd love to be able to say that's not like me, but the various notebooks and personal journals in boxes and bookcases around my house and in storage that all start and stop at random dates would beg to differ.<br />
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Part of me would also love to be able to say I can't think of anything to talk about, but that would be an outright lie. As a matter of fact, more often than not, I wake up in the dead of night, literally in mid-thought about some great piece or fantastic idea for a site section. Unfortunately, if I move to write it down, I forget it and my easily distracted brain turns on to more interesting and useless ruminations to keep me awake.<br />
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Lately, I've even been avoiding my computer in general. I'm just...pooped. For many months, I've slowly begun to feel that my medication wasn't working. Taking my Concerta at 6am when I take the dogs out and going back to sleep for a couple of hours used to make it easy to get up at 8 or 9 to start a day of research and supporting others and web design. But since March or so, 8 or 9 was creeping into 9:30, 10, 11...I haven't even bothered to take the Concerta at all in two weeks, since I sleep just as much on it as I do off of it.<br />
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It turns out, there is a sliver of good news - it's not the Narcolepsy. I don't have to be terrified at 26, after only 2 years since being diagnosed that this disease is suddenly speeding downhill at fullspeed and dragging me with it. I should still have plenty of time to work on a hundred more types of medication and dosages before I really get frustrated with that.<br />
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But, as always, there's another side to the exhaustion coin. Another side I fear many of us will have to face (those of us who don't already) at some point in the future no matter how hard we try to avoid it.<br />
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Another autoimmune disorder.<br />
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I have been diagnosed with several autoimmune disorders (and general "immune-related") disorders over the years, probably starting with allergies and asthma by the time I was six. I was also diagnosed with vitiligo, eczema, cardiomyopathy as a teenager, Narcolepsy (of course), and suffer from various symptoms of fibromyalgia, chronic fatigue, and certain other conditions that I do not actually fit the clinical guidelines for.<br />
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Recently, however, what started years ago as minor heartburn and nausea I thought was related to taking so many antibiotics as a young child and to being on so many prescriptions medications from such a young age turned into a constant abdominal pain that nothing would help. From there, it was intestinal pain, cramps, nausea, burning, from my throat to my groin. I could barely swallow my pills at night, and simple foods would take forever to swallow. Bananas were evil; swallowing a bite of potassium-laden goodness was like plugging a hole with expanding foam.<br />
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While reading about Autoimmune Disorders one day, I realized I had other symptoms that were probably related I hadn't even connected. Growing fatigue, tooth (as in ALL my teeth) pain and sensitivity, leg cramps, tingling and numbness in my fingers, palms, and feet, strange ear pains and pressure had all come and gone over the last few months, waxing and waning, and are apparently symptoms of various vitamin and mineral deficiencies. I was now convinced that my body wasn't even getting nutrition out of what little food it was managing to hold onto. Malnutrition even explained recent mood swings and weight gain. It was time to go back to the gastroenterologist.<br />
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Dr. C wasn't thrilled I'd skipped my follow-ups over the last year, but since we only thought I had some reflux and inflamation, no hard feelings. As we talked more, it was clear I needed a follow up endoscopy (a camera view of the esophagus, stomach, and very beginning of the small intestine), and because of the diarrhea and cramping, a colonoscopy. I can't say I was thrilled to be having the final frontier explored 25 years or so ahead of schedule, but I agreed, which should tell anyone who knows me how uncomfortable I had become.<br />
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The day before the procedure was the worst. I had to take two weeks' worth of laxative over a period of about 16 hours. Have you ever had the dry heaves? Imagine that, but at the other end. Strange, uncomfortable, and not all that different from what my body had been doing to me anyway.<br />
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They took tissue samples of my esophagus, stomach, small and large intestines, and colon and sent them to pathology to be tested and analyzed. I was certain that the samples and the bloodwork I had done would confirm one of three (or maybe three of three) possible diagnoses:<br />
*Crohn's Disease - scary, bad, but not uncommon and manageable with medication, diet, and I know several people who have it, so I wouldn't be alone.<br />
*Ulcerative Colitis - also scary, bad, not uncommon, manageable with medication, diet, and similar enough to Crohn's that I wouldn't be alone.<br />
*Celiac Sprue - basically a gluten allergy, which includes wheat and other grains. This was specifically what I thought I had, and was the best "option" if I had a choice. No drugs needed, just diet changes, and I could be better than normal.<br />
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It didn't work out that way. I found out yesterday, July 8th, that all my bloodwork was essentially normal, and I am completely negative for wheat and gluten alergies, other food allergies, and have no infections or parasites. What I DO have is known as EOSINOPHILIC GASTROENTERITIS.<br />
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Eosinophils are the white blood cells associated with an allergic reaction. They are what flood the tissue around a bug bite and cause swelling. They don't hang out in the digestive tract. Actually, they do hang out in the digestive tract, of a very few people with EGID (eosinophilic gastrointestinal disorders) such as myself. They infiltrate the lining of one or more organs of the GI system and cause the body to react to food as though you are allergic to it, even when you actually aren't.<br />
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This means, without dragging out this post too much longer, that I have a super long road ahead of me with a condition that affects an incredibly low number of people. One article mentioned about 300 documented cases studied between the 1930's and 2009. The one support group someone found for me has about 600 members, with many of them family members of patients, and the patients you do hear about tend to be infants and children.<br />
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Although I am struggling to find ways to keep up my energy and mood right now, this is actually one more reason for me to devote myself to Planet Narcolepsy and my belief that "Awareness Matters." Because I don't think these conditions are exclusive, and I think the model we are trying to build with Planet Narcolepsy can be applied to so many other conditions and potentially change, maybe even SAVE, lives. Today, having the support of my friends, family, and members, it is mine.Planet Narcolepsyhttp://www.blogger.com/profile/15071615406245456510noreply@blogger.com5tag:blogger.com,1999:blog-6470056295417863627.post-26831662390564067342010-06-02T12:08:00.001-04:002010-06-02T12:10:30.530-04:00Save a SeekerEveryday I log onto <a href="http://www.planetnarcolepsy.com/">Planet Narcolepsy</a> at least once, and everyday I see this blog staring me in the face at the top of the first page. Each time, I mentally poke myself in the ear for not adding something more recent as the current post date ticks further and further into the past.<br />
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At the same time I'm devoting brain cells to worrying about updating the masses, I'm checking Google Reader and rolling my eyes at the five or six entries a day that pop up about how to order your Provigil and Nuvigil and Xyrem online. No prescription! Discounted pricing! Act now!<br />
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Usually, there's at least one Narcolepsy CURE! All natural! Ancient remedy rediscovered! Turns out, it's the same one that will help absolutely anyone on earth lose 30 pounds in 30 days or your money back - if you can find them.<br />
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Then I start worry about who else might be reading this stuff. Teens, trying to find something, ANYTHING, to help them get through the school day and to be able to socialize like their friends? Desperate college students refusing to admit they may need help getting through graduate school, desperate enough to forget all they know about checking sources and the importance of starting off skeptical?<br />
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What about those of us who have been suffering for far longer than I have, or who have other difficulties? Those who can't take any stimulants at all, who have lost more memory, more cognitive function, whose fog shuts out everything beyond the computer screen? Every tidbit of information, of hope, must be like raindrops to a man stranded in the desert.<br />
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So with them in mind, I must go to the blogs, the "news" sites, the copycats, the Yahoo! Answers, the Ask.coms, and comment on everything I can find. Herd the poor wandering souls to the right sources, to the Stanford Universities and the NarNets and the Planet Narcolepsys.<br />
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As I close all my tabs and windows, and get ready to log off for the night, I get one more glance at that last post from too long ago, I sigh and remind myself that no matter when I wrote it, if someone new reads it today, if I've gotten one more person, one more sleepy friend, one more doctor to learn just one more actual fact or make one more friend for support...then that's the only update I need.Planet Narcolepsyhttp://www.blogger.com/profile/15071615406245456510noreply@blogger.com0