Wednesday, December 15, 2010
YOU MUST BE A REGISTERED MEMBER TO ACCESS THIS LIST.
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."
More to come...ENJOY!
Wednesday, December 8, 2010
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.
Hopefully you will be able to review your results with your doctor soon and begin treatment. Good luck!
Sunday, December 5, 2010
Just 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.???????
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.
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.
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.
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.
Please let us know what happens when your results are in, and best of luck to you!
Sunday, November 7, 2010
Friday, October 22, 2010
I 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!
It is not only possible that Narcolepsy is causing problems with your memory, it is highly likely.
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.
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.
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.
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
Good luck, and please contact me anytime!
Monday, October 11, 2010
Maybe your friends and family don't want to be involved with Narcolepsy. Maybe they have other conditions they worry about.
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.
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.
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:
Inflammatory Bowel Diseases (Crohn's, Ulcerative Colitis, etc.)
Many of these are autoimmune conditions, and the overall topic of autoimmune clusters is a goal to be addressed as well.
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 email@example.com for more information, and don't hesitate to share your ideas on content or other conditions to feature.
There are only a couple of "requirements" (I'm flexible) for any topic to be assigned its own section:
*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)
*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)
*There must be some sort of hurdle in obtaining diagnosis (a highly specialized test, a similar and often misdiagnosed condition (like epilepsy for us)
*There must be little or limited knowledge in the medical community at large
*Average time to diagnosis should exceed 2 years
*Funding for research must be minimal or nonexistent
I hope to hear from many of you and look forward to working together.
Sunday, October 3, 2010
Tuesday, August 24, 2010
Wednesday, August 11, 2010
Monday, August 2, 2010
Wednesday, July 28, 2010
Friday, July 9, 2010
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.
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.
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.
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.
Another autoimmune disorder.
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.
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.
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.
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.
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.
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:
*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.
*Ulcerative Colitis - also scary, bad, not uncommon, manageable with medication, diet, and similar enough to Crohn's that I wouldn't be alone.
*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.
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.
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.
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.
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.
Wednesday, June 2, 2010
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!
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.
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?
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.
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.
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.
Friday, May 21, 2010
Yes, I live with my entire family. In fact, my parents, two siblings, and their two dogs, three cats, two birds, and a guinea pig moved into my house with myself, my boyfriend, and our two dogs not quite a year ago after we all realized the crappy economy was eating us alive. For the most part, the arrangement relieves enough financial stress to make up for the "other" stress it creates. Except when it throws off "The Routine."
Those of you with a chronic illness like Narcolepsy know what I'm referring to when I talk about The Routine. It's the schedule that rules all schedules, the supercalendar, the auto-pilot, the version of your day, on any day, that if you can meet up with it, you will make it to the end of the day and be ok. It is your wake up time, your shower time, when you eat. It is your commute, your lunch hour, and when you clock out. It is soccer practice, and when your favorite show is on, and how long it takes to pop a bag of popcorn, and exactly when to go to bed and take your medicine. It is a complete lifeline that MUST NOT BE SCREWED WITH.
Messing with The Routine is not only ill-advised, it is disastrous. And outsiders just don't understand. It doesn't have to be a huge incident that derails us for a day, or sometimes even longer. It can be that someone snuck into the bathroom before us. The line at Dunkin Donuts was longer than usual. Your dog didn't wake up wagging her obnoxious tail against the sides of her crate at the right time, so you took your medicine early (or late) and...oh, well, that's probably just me who uses the puppy as an alarm, but you get my point.
'Normal' people can adjust. They get out of the line, they wait until they get to the office for coffee. They don't need to wake up at four to take a pill to be able to get up for work at six. They can pee, get dressed, eat, wash up in any order and have it take the same amount of time before they leave the house. Their routine is habit. Our Routine is need.
So you can imagine what three weeks of not having my brother to run to the store, not having my father to watch the dogs during the day, and not having my mother to entertain the pups in early evening (for my nap) did to My Routine. I was a wreck! I didn't think I could have slept any worse at night, and then I did. Regular appointments it had taken me MONTHS to finally adjust to and show up on time for were harder and harder to make it to at all, let alone anywhere near the appointed hour. Worse, my cute excuses made less and less sense.
Just as I thought I was getting The New Routine, Temporary, figured out, another curveball. Rain. This, even The Healthy understand. The gloom, the gray, the blahs, the strange aches and pains and overwhelming desire to stare into space, - ok, so I have that desire regardless of the weather, it gets worse when it's rainy, I swear - the rain has a naturally catastrophic effect on The Routine. Tuesday, I got up and prepared for my 11:45am allergy injection. I was in the shower by 11:10 at the latest, knowing it takes me about 10 minutes to shower, and less than 15 minutes to get to the office.
When I step out of the shower and put on my watch, it is 11:48. Now, I'm well known for automatic behavior, especially at my desk, but I happen to be an oddity because I tend to remember feeling odd and trying to do tasks properly, not realizing how out of it I am until after it passes. This is the first time in a VERY long time I have obviously completely given over and lost this much time. I don't like it, but whatever, I'll do my errands now.
I call the doctor's office, and make up something about misreading my handwriting. "I thought I wrote 1:45, but I was checking my other appointment and now I see it was 11:45." She offers me 2pm, but I have another appointment later and can't do it, so I decline and reschedule for the next day. It isn't until I hang up that I realize what a moron I am. She must be wondering why the heck I could do 1:45 but not 15 minutes later.
I go to the bank to deposit a check and get some mortgage documents notarized. The company is continually exceeding expectations in making my life miserable. Next is Staples. I need some things and they have a UPS station where I can grab an envelope and send out the packet. Except my "shortcut" turns out to be the long way. Routine dent #2.
Finish Staples shopping, stop outside at the station...it's not UPS, it's Fed-ex. Fail #3. I can feel the desperate need for a nap headache coming on, and it's almost time for my next appointment. It is gray and dreary, and the rain is coming back. I call my father to cancel our plans to go grocery shopping before my appointment. I now have to go back across town to the UPS store instead. Let's add another point to the other side. I ask him if he would please run home to let all the dogs out. Mine have been holding it since they last went out at 6am. It is now after 2.
UPS store goes without a hitch. Kid behind the counter is friendly, takes care of me, is even kind of cute, although he probably hasn't graduated high school yet and I am reminded how old I used to think 26 was. Now that I am 26, I think I used to be right.
Make it to the doctor's office. Realize I haven't eaten all day. Since I am in a hospital, I have ten minutes to spare and run to the cafeteria. True, I am over 200 lbs and only 5'2" if I stretch, so running is a bit of an overstatement. Regardless, the cafeteria is closed and I am left with a poptart from the vending machine. Don't laugh...I picked the poptarts because the package said "7 vitamins & minerals." I figured 7 were better than none, and none of the other items mentioned any vitamins or minerals.
Back in the doctor's office, in the exam room. The tech and then the doctor have to repeat every question to me at least twice, because I can't seem to understand English. It is obvious I have hit Routine Meltdown. There was to be no saving me. I finally just started responding to any sound that felt like a question with "I think so," and "I'll have to check." I suspect I would not have been able to spell my own name.
Upon leaving the office, it was pouring. I pretended I was happy, that I could blame it all on the rain. Soaked, I made it home and promptly passed out on the couch for two hours. It was after 8 when I woke up and forced myself to eat dinner. I think it was macaroni and cheese. Fortified, you know.
Hoping Wednesday would be better, I ignored a call early in the morning from my therapist, who was apparently cancelling that day's session. A Routine not thoroughly recovered from the kind of devastation like the day before just cannot take that kind of hit, and we nearly collapsed. I ended up late for my rescheduled allergy shot. For the first time ever, the doctor was on time, of course.
I figured I'd ride it out. The weatherman said by Thursday the rain would be gone, we'd be in for lovely weather. I might have a chance to reset The Routine, shine it up. I drove home from the allergist, convincing myself we'd be back on track tomorrow!
I walked in the door, put down my bags, checked the mail, and turned around to find...my mother, home from the hospital, in her chair, napping, Dad working at his desk, dogs on the couch, everyone peaceful, normal...and obviously with no respect whatsoever for my Routine.
Friday, May 14, 2010
Well, I don't exactly have a quick answer to that. I do, however, want to make it clear that I have not abandoned the cause by any stretch of the imagination. I've decided to spend some time on a regular basis, if not even daily, noting here what has been keeping me busy and how it is related to our goals. A running narrative of my steps forward, back, and the (I think) incredible things I'm learning that aren't always that quick or easy to share with others in any other way than a quick hyperlink.
What better day to start than today?
I got up a bit early, without taking my Concerta. I had to wait for my father to pick it up at the pharmacy, as I had run out yesterday and forgot to get it in the afternoon. It was an unfortunate reminder of how much I really do need drugs to function every day, and I wondered how I could have possibly made it to work and through a full day prior to being diagnosed. I fell asleep in my computer chair twice before my two cups of coffee and the pill kicked in.
I checked the Facebook page, to see if there were any comments, new fans, or discussions posted. We now have 150 members, making more than half of them people NOT on my personal friends list. I also checked the Twitter feed to see if anyone had posted good links, articles, or decided to follow us that I should contact. No email that needed to be dealt with right away, check the boards at Daily Strength, and then the member forum over at the main site...all before any research or writing can be done.
I've been following Mary J. Shomon on both Facebook and Twitter fairly closely. I'm reading her book "Living Well With Autoimmune Disease" to learn more about how Narcolepsy might be connected to other diseases and body systems. She is a well-known patient advocate who has a thyroid condition, and I've decided she's my mentor for the time being. I notice she has posted a link to a site dealing with Celiac disease and gluten-free lifestyles. This is interesting, as I just finished reading a section of her book on Celiac last night, and I'm beginning to think I may have it or be on my way.
The website, Gluten Free Works, is fabulous. I learn all about more symptoms (and check off a dozen for myself and several PWN I know), sign up for their newsletter, make sure their Facebook page is connected to Planet Narcolepsy, follow them on Twitter, purchase the founder's book, and spend at least an hour looking at patient stories and connecting the dots in my head.
Why do I bother with the newsletter and all the social media, you ask? Because every person who checks any one of my pages can be connected to that valuable resource. And any person who checks their pages, can find me and Planet Narcolepsy. If the primary goal is to band together and network and teach each other, we have to find each other first.
Now, it's 5:30. I have 4 dogs to feed, should probably dig up something for myself. I'd love to write another article for the main site, but I'm not even sure where to start. I think I'll just get back to that book on Autoimmune diseases and I'll tweet tomorrow what I learned.