Jump to content


Photo

Newbie With A Question


  • Please log in to reply
17 replies to this topic

#1 napnow

napnow

    Member

  • Members
  • 23 posts
  • Gender:Female
  • Location:Lansdale, PA
  • Interests:I simply can't live without books!

Posted 06 August 2009 - 07:26 PM

Is Narcolepsy a kind of spectrum disorder? I was diagnosed with N last month after spending most of my nearly 40 years being tired. I did the night and day sleep studies and according to those tests along with personal information the doctor diagnosed me. However, after reading several posts, it seems as though my narcolepsy is not as bad as other's. I have never just fallen asleep.... like boom! I'm asleep. I have always been able to work around and through my tiredness now matter how exhausted I felt. I haven't had the cataplexy some of you describe, although I do get quite weak when I cry. I could go through all of the symptoms and tell you which ones I have , which ones I sort of have, and which ones I don't. SO that is the basis of my question... is there a scale of "more" narcoleptic and "less" narcoleptic? Perhaps, since I have felt like this for as long as I can remember I have sort of gotten used to it and coped? I don't know. All I know is this... I have been trying to figure out why I am mind -numbingly tired and why I would rather nap my life away than anything else for many many years. It is a tired beyond words. For me, the drive to sleep is stronger than any other human drive. I am so sick of being so tired that nothing else counts. I am on Nuvigil and will start Xyrem this weekend. The Nuvigil does help. I take it around 7:30 and I feel pretty good until around 3:00 and then I start getting tired again. Hopefully the combination will work with no major side effects.

So there it is. My question is due partly to reading the other posts here, and partly because I don't think people (meaning my best friend) believe that the Dx is correct. After all, they haven't seen me fall asleep while eating or walking or anything... and that is what narcolepsy is, don't you know. Posted Image

#2 merrymom1013

merrymom1013

    Member

  • Members
  • 150 posts

Posted 07 August 2009 - 02:19 PM

I do think there are different levels of impairment with narcolepsy, and not everyone with narcolepsy has every symptom. For some, the symptoms get more severe over time; still others the opposite. It's not unusual that your symptoms are subtle enough that your friends don't see it. That's why conditions like narcolepsy are called invisible disabilities. Some folks report managing without regular medication (naps, diet, etc). Yet the decision to medicate my daughter was a no-brainer because without medication her quality of life was zero. Many PWN manage careers and active lives; others are disabled. Recent research supports narcolepsy being an autoimmune disease- if you think of other autoimmune illnesses there is usually a range of severity.
If your symptoms aren't that severe, that's great news. Learn what you can from resources like this and some reliable research sources, find a doctor you trust & can work with, and work toward maintaining your best possible quality of life.

#3 Saraiah

Saraiah

    Member

  • Members
  • 387 posts
  • Gender:Female
  • Location:U.S.

Posted 07 August 2009 - 05:28 PM

Is Narcolepsy a kind of spectrum disorder? I was diagnosed with N last month after spending most of my nearly 40 years being tired. I did the night and day sleep studies and according to those tests along with personal information the doctor diagnosed me. However, after reading several posts, it seems as though my narcolepsy is not as bad as other's. I have never just fallen asleep.... like boom! I'm asleep. I have always been able to work around and through my tiredness now matter how exhausted I felt. I haven't had the cataplexy some of you describe, although I do get quite weak when I cry. I could go through all of the symptoms and tell you which ones I have , which ones I sort of have, and which ones I don't. SO that is the basis of my question... is there a scale of "more" narcoleptic and "less" narcoleptic? Perhaps, since I have felt like this for as long as I can remember I have sort of gotten used to it and coped? I don't know. All I know is this... I have been trying to figure out why I am mind -numbingly tired and why I would rather nap my life away than anything else for many many years. It is a tired beyond words. For me, the drive to sleep is stronger than any other human drive. I am so sick of being so tired that nothing else counts. I am on Nuvigil and will start Xyrem this weekend. The Nuvigil does help. I take it around 7:30 and I feel pretty good until around 3:00 and then I start getting tired again. Hopefully the combination will work with no major side effects.

So there it is. My question is due partly to reading the other posts here, and partly because I don't think people (meaning my best friend) believe that the Dx is correct. After all, they haven't seen me fall asleep while eating or walking or anything... and that is what narcolepsy is, don't you know. Posted Image



Hi Napnow,

I'm 40 and got diagnosed with N exactly one month ago, although I've been reporting intense unrelenting fatigue to my doctors for about 19 years. My experience has been that even if I have no stimulant medication in my body (I take Provigil), I almost never have sudden sleep episodes. I've had "micro-sleep" episodes of 1-2 seconds less than 5 times (that I'm aware of) in the last 19 years. I do have episodes of diminished alertness occasionally, even though my eyes are open and I am following the conversation, or driving (which I'm not doing at the moment, pending clearance from my doctor). I also do not have cataplexy (although I bet the weakness you experience when crying is a mild cataplexy). When my doctor told me he'd be testing me for narcolepsy, I looked at him as if he'd lost his mind.

You said, "For me, the drive to sleep is stronger than any other human drive. I am so sick of being so tired that nothing else counts. " That exactly describes my experience. Starting in roughly May of 2009 , my former ability to push through my extreme tiredness and focus on my work at the office or at home just stopped working. My former strong wish to sleep became an overwhelming unremitting craving to sleep - all that I could possibly think about.

Here's my guess about one person's N symptoms can be so wildly different from the symptoms of a different person with N: The individual's symptoms depend upon the areas of the brain in which the hormone hypocretine/orexin is no longer being produced. (I'm not a neurologist, but I have had master's level education on the neurobiology of the brain in a program on clinical psychology.) So this is just an educated guess.

Another person mentioned that researchers have suspected that N is an autoimmune disorder for a long time. That was actually shown to be true in a published journal article in May 2009, I think by scientists at Stanford. It makes sense to me that different PWN can have very different symptoms. The cause of N is that the person's immune system kills particular cells in the hypothalamus in the brain. Those cells are responsible for manufacturing a hormone alternately called hypocretin or orexin. So my guess is that, as more and more of those cells are killed, the PWN has less and less hypocretin/orexin in the brain. Hypocretin/orexin is responsible for regulating lots of things to do with sleep - sleeping, awakening, limiting dreaming until 30 or more minutes after the onset of sleep, staying awake during the day, being able to sleep at night, keeping the person from moving during REM dream sleep, allowing the person to move when not in REM sleep... And, as if that weren't enough, I've read that hypocretin/orexin also regulates things like appetite and expenditure of energy/calories. And that helps to account for the fact that more PWN are either overweight or obsese than people without narcolepsy.

Those cells in the hypothalamus that make hypocretin/orexin don't only secrete the hypocretin/orexin into the hypothalamus. The cells' axons (sort of like the cells' very short or very long legs) reach far and wide around the brain, stretching to lots of different areas of the brain. So the hypocretin/orexin hormone actually gets secreted into lots of different areas in the brain. Knowing that, my guess is that a particular PWN's symptoms of N depend upon exactly WHICH cells have so far been attacked and killed by the autoimmune system. If the cells that secrete hypocretin/orexin into the area of the brain that keeps the PWN awake during the day are killed, I'd bet that person has a lot more tendency to have micro-sleep episodes during the day. If the cells that secrete hypocretin/orexin into the area of the brain that allows a person to avoid REM sleep immediately upon falling asleep, and instead go to deep sleep, are killed, that PWN is more likely to be dealing with overwhelming exhaustion all day long. Etc. And of course, N tends to be a progressive illness. I would again guess that the reason for this is that over time, more and more of the brain cells (neurons) that secrete hypocretin/orexin are killed by the immune system, until so few are left that some PWN have undetectable levels of hypocretin/orexin in their cerebrospinal fluid (which is the fluid bathing the brain and spinal cord).

One of my main missions, now that I have finally been diagnosed with N, is to get into the research literature so that I really understand exactly what happens to create this disease. I have a fantasy of writing a new book for PWN and their families and employers that explains a lot of the research findings about how the disease happens. Maybe if PWON get a clear understanding of how the disease develops, they will be less likely to give PWN such a very hard time.

BTW, I just wrote a post on my experiences over the last 18 days starting Xyrem, just in case one more story is helpful to you. Oh, and you mentioned that Nuvigil doesn't seem to help to keep you awake after 3pm. I don't know anything about Nuvigil, but just fyi, my sleep doc had me take 400mg of Provigil at waking, and then take another 200mg at 1pm when the first dose was initially unable to keep me alert during the day. I don't know if you can do that sort of thing with Nuvigil or not.

Cheers,

Saraiah

#4 Mike M

Mike M

    Member

  • Members
  • 379 posts
  • Gender:Male
  • Location:Saint Paul, MN
  • Interests:Ultimate Frisbee, Literature, Film, Music, Narcolepsy, Education

Posted 07 August 2009 - 06:38 PM

Napnow,

You have gotten a number of excellent responses, but I thought I would add quickly to the chorus. I too was diagnosed later in life (literally 4 days before my 39th birthday). Like you, excessive daytime sleepiness is my strongest symptom, but I have rarely experienced pronounced sleep attacks. Before I was on stimulants (which I started pre-diagnosis), I would dose while reading to my daughter after a full day of work. I also had a handful of moments when I would dosed briefly behind the wheel. That said, I also know that I did have occasional microsleeps, and I definitely experience some HH dreams. Sleep paralysis and cataplexy do not seem to be symptoms for me, but as others have pointed out, some cataplexy is incredibly mild (I definitely have had odd muscle weakness at times). I have no doubt that narcolepsy affects each of us differently, but I also know that medical science would likely give a more uniform response. Given the realities that doctors and researchers face, they have to present a more simplified version of what we experience. The more I have interacted with PWNs (online and in person) the more convinced I am that we all have the same disease, but that we all have an incredibly varied experience of that disease. Good to have you here!

Cheer!

#5 merrymom1013

merrymom1013

    Member

  • Members
  • 150 posts

Posted 07 August 2009 - 08:27 PM

Nyx,
Your narcolepsy may be mild, but your story is very encouraging to me. As the mom of a teen with narcolepsy who hopes to go away to college next year, I love hearing you managed law school & medical school!!!

#6 merrymom1013

merrymom1013

    Member

  • Members
  • 150 posts

Posted 08 August 2009 - 12:11 PM

Thanks Nyx. It has taken us awhile, but my daughter has a great doctor, meds that are working, & the accommodations she needs at school. Your story confirms that the fight with the SAT folks for accommodations was worth it. Without them, she probably would have done ok- with them, her scores were really good. Full-blown narcolepsy with cataplexy and puberty aren't a pretty combination, but I am grateful that it happened in a way that she was able to learn to cope before driving & college.

#7 Saraiah

Saraiah

    Member

  • Members
  • 387 posts
  • Gender:Female
  • Location:U.S.

Posted 08 August 2009 - 04:18 PM

Merrymom and Nyx,

You are both probably already aware of this (and I already posted about it in the Teen section), but there's this pen called the Livescribe Pulse Smartpen that unbelievably records both the handwritten notes a person takes, and links that to the audio of the lecture or whatever that the person is hearing at the same time. Later, the person can put the pen point on one of the letters written during the lecture, and the pen will play back the audio recording of what the lecturer was saying at the very moment that particular penstroke was written. I haven't gotten mine yet because it costs between $150 - $200. You also have to use special paper with it (but if you have a color printer, you can print out the special paper yourself instead of buying it). The reviews are excellent, and Bafflegab says it really works as advertised.

I just thought I would call your attention to it, since you are both either a student or a mom of a student. I have trouble at work particularly during meetings, when I often have periods of diminished alertness, or just tune out what is being said, or have microsleeps very occasionally. The Smartpen sounds like it would be so useful, so that PWN can easily playback the period of the lectures or meetings when they were asleep, without having to listen to an entire audiorecording of the entire lecture.

Hope it's helpful!

Saraiah

#8 napnow

napnow

    Member

  • Members
  • 23 posts
  • Gender:Female
  • Location:Lansdale, PA
  • Interests:I simply can't live without books!

Posted 10 August 2009 - 07:08 AM

Thank you all for your responses. I really appreciate the time you took to answer my question in such depth.

As I have said before... what a great place for support and information!



#9 napnow

napnow

    Member

  • Members
  • 23 posts
  • Gender:Female
  • Location:Lansdale, PA
  • Interests:I simply can't live without books!

Posted 10 August 2009 - 07:14 AM

Nyx,
Your narcolepsy may be mild, but your story is very encouraging to me. As the mom of a teen with narcolepsy who hopes to go away to college next year, I love hearing you managed law school & medical school!!!


I unknowingly had narcolepsy during my college years. I have a B.A. in liberal arts (I majored in anthropology) and I have a M.A. (specializing in medical anthropology). It was rough... especially when I thought I was awake and taking notes only to find those notes totally incoherent when I needed them! I tape recorder is an excellent idea and that pen gizmo sounds wonderful!

#10 Nyx

Nyx

    Member

  • Members
  • 64 posts

Posted 10 August 2009 - 08:47 AM

I unknowingly had narcolepsy during my college years. I have a B.A. in liberal arts (I majored in anthropology) and I have a M.A. (specializing in medical anthropology). It was rough... especially when I thought I was awake and taking notes only to find those notes totally incoherent when I needed them! I tape recorder is an excellent idea and that pen gizmo sounds wonderful!


If you have Microsoft Word and choose the "Notebook layout" under the "View" tab, it has an audio recorder built in at the top of the page so it records while you're taking notes. I think it might even take you to the place in the audio when you click on a specific place in your notes later on. But I don't usually type at the same time because my clicking on the keys can get a little loud and mess up the recording. But it's great in a pinch! (And I did just buy a plastic cover for the keys on my macbook so perhaps I can do both now).

#11 artmore

artmore

    Member

  • Members
  • 2 posts
  • Gender:Female
  • Location:Tennessee
  • Interests:I love to read, and I like cycling, but I haven't done much of that in the past few years.

Posted 11 August 2009 - 10:30 AM

Hi, napnow,

I am a 52 year old female, and like you, napnow, I was just diagnosed with mild N a few weeks ago. I'm a college professor, too, so I can tell you what it's like to be on the other side of that particular podium. Posted Image

I have been treated for 10 years for restless legs, which I DON'T have. The doctor at the sleep clinic says that I've probably had N all of my life. I don't have C, but I dream seemingly all night long and when I take naps. I used to sleepwalk when I was a teenager and as a young adult. I've also had migraines since I was in my twenties, and I can't remember when I had quite enough energy to do all that I want to do. For years I've eaten to stay awake while driving or just watching TV. All I have going for me is sheer determination. It's gotten me through for years, but even that has failed me in the past few years.


People I work with don't understand how I've been able to function most of my life while having 2-3 migraines a week, but at least they understand what a headache is. I'm finding out now that N is going to be much harder to explain. Now that I'm getting over the shock of this, myself, I'm ready to stop discussing it with anyone except those who need to know or other PWN. Two people I know have laughed and said that I can't have N because I don't fall asleep in the middle of a sentence. A couple of people have suggested that I just need to take this or that vitamin. Most of my friends seem reluctant to talk about it, and believe me, I haven't talked about it much--only when they've brought it up in an uncomfortable sort of way. Oddly, my children don't seem to have any curiosity about this at all. I think they're waiting for me to tell them whatever they need to know. On the other hand, my husband and mother are very supportive and understanding. My mother, who was a nurse before she retired, has Lupus, another autoimmune disease, and she says she's not surprised by this. They know all of the weird things I've done in my sleep most of my life. In fact, my family is riddled with neurological problems: migraines, OCD, anxiety, panic disorder, depression, familial tremors, and also autoimmune disorders. Our three children all had sleep terrors, too.

My narcolepsy is mild, too, thank goodness, and I've been able to function in my personal and, to a great extent, in my work life, but I do have a reputation with students for being forgetful. I was once accused by an unhappy student of having early-onset Alzheimer's, and to tell you the truth, I have been worried about that this year, enough to start researching it. I'm relieved to know that my memory problems aren't due to that! Because I'm afraid that my students will notice that I'm loopy and slurring my words when I take Zomig for those frequent migraines and maybe think I'm drunk or high, I always end up explaining to them about the headaches. I frequently struggle to remember words in class (and elsewhere), and it's embarrassing, but I try to comfort myself with the thought that at least they know I'm human. If I don't write down what we went over in class, I may not remember by the next class meeting, and I've sometimes asked students to tell me what we covered last. I thought I needed a change, so I accepted the position of department chair last year, and that's when I really hit a wall. I've had real difficulties in handling the long hours, the constant barrage of emails, responsibilities, paperwork, student and faculty issues, and so on and at the same time prepare for the few classes I need to teach. I resigned this summer and am going back to teaching full time, but if I hadn't overextended myself, I may not have realized for some time yet how truly wrong my "state of being" is. Now I know that I have to be very disciplined in taking notes and preparing for class because it's never going to change. I know the information, but that doesn't mean it's going to be there when I reach for it. I've always tried to be understanding about students' problems, but now I'll be even more understanding of students who fall asleep in class.

My doctor says that the N will never be any worse than it is now, but my symptoms have been gradually growing worse over the past twenty years. I had been aware of the symptoms; I just didn't know anything about N, so I didn't suspect that, and to a large extent, I had thought that everyone dreams and sleeps as I do. I hope it doesn't get worse. I feel very fortunate to not have it to the extent other people do.

I've just started taking Nuvigil and Xyrem. I have questions about the Xyrem, but I'll save that for another forum.

I just want to thank you all for being willing to communicate with others about your experiences. I intend to read all of the posts about Xyrem, and I would like to compare notes with any of you who are just starting it. I've had bad reactions to some medications in the past, and I was very anxious all last week about the new medications. I want to be really careful with this.

#12 napnow

napnow

    Member

  • Members
  • 23 posts
  • Gender:Female
  • Location:Lansdale, PA
  • Interests:I simply can't live without books!

Posted 13 August 2009 - 09:31 AM

Hi artmore!

It is amazing that people are diagnosed after having symptoms for years and years. I have been complaining about "being tired all of the time" for as long as I can remember and finally at 39 I am diagnosed. I am kind of happy that I have Narcolepsy. When I was a teen/young adult I thought it was "just the way I am." As an adult I thought I was lazy. As a wife I thought I didn't contribute enough. As a Mom I thought I was a bad Mom. Now I have a disorder... and well, there is no guilt in that. For the most part, like you, I have been able to carry on with life... going to college, getting married and having kids. It took a lot of knowing myself and sheer determination (sound familiar?), not to mention a lot of napping.

I always preferred the professors who were "real". The ones who were there for the love of their subject and for the love of teaching. I resented the ones who treated teaching as what they did between writing grants and doing their own research.



Hang in there. I am doing the Xyrem and Nuvigil thing too and so far so good!



#13 disordered

disordered

    Member

  • Members
  • 14 posts
  • Gender:Female
  • Location:WI

Posted 18 August 2009 - 01:18 PM

Hi napnow, I'm a newbie to the forum as well, but not to N. I was lucky enough to be diagnosed 11 years ago when I was 20 (only 3ish years after my symptoms really kicked in) due to a well versed neurologist that had recently diagnosed my mother with N (to date, 3 other females in my family have also been diagnosed, but that's a whole other story!). I've always considered my symptoms to be more 'medium' with my EDS the most difficult to deal with. I used to say that I only woke up so that I could go back to sleep again. I have never instantly dropped to sleep, but was always struggling to stay awake. Once I sat down, it was a good bet I would fall asleep. I have had a few very distinct Hypngogic Hallucinations. I do have mild cataplexy, but wasn't aware of it until a doctor asked if my knees and elbows get weak and mushy when I laugh or cry. I figured buckling over when I laughed was normal and everyone did it. Over the past few years my symptoms have progressed, most especially the EDS and cataplexy, but I believe the progression is due to other autoimmune issues I have been dealing with. I'm functional on meds (just dex) for the most part, but use a lot of the 'stay awake' tricks I developed before diagnosis, and just accept that sometimes I will just be groggy. One thing to keep in mind is that as time goes on, you may find that some things you have just gotten used to as a part of life, are also a part of being a pwn. A few personal examples are brain fog, stumbling over words, mumbling (we call it mush mouth in our family), difficulty with conversations as you struggle to find the right word or remember what you were trying to say, and being unable to turn off alarm clock on the days you actually hear it (turns out I go through morning cat attacks) to name a few. I'm fortunate to have a good support group around me that can see my droopy eyelids, hear my mush mouth, and know to ask me if it's time for my next dose. They are also good at helping me deal with other people that seem unwilling to even try to understand that no, a cup of coffee will not help me. It took some time to build that group, and a lot of info sharing to help them understand, but having people around who understand can sometimes make all the difference. (On a side note, I want to thank everyone on this forum. While this is my first post, I've discovered and rediscovered this forum a few times when I was having trouble with my n, and reading through your posts have always helped me through!)

#14 napnow

napnow

    Member

  • Members
  • 23 posts
  • Gender:Female
  • Location:Lansdale, PA
  • Interests:I simply can't live without books!

Posted 19 August 2009 - 08:36 AM

Hi napnow, I'm a newbie to the forum as well, but not to N. I was lucky enough to be diagnosed 11 years ago when I was 20 (only 3ish years after my symptoms really kicked in) due to a well versed neurologist that had recently diagnosed my mother with N (to date, 3 other females in my family have also been diagnosed, but that's a whole other story!). I've always considered my symptoms to be more 'medium' with my EDS the most difficult to deal with. I used to say that I only woke up so that I could go back to sleep again. I have never instantly dropped to sleep, but was always struggling to stay awake. Once I sat down, it was a good bet I would fall asleep. I have had a few very distinct Hypngogic Hallucinations. I do have mild cataplexy, but wasn't aware of it until a doctor asked if my knees and elbows get weak and mushy when I laugh or cry. I figured buckling over when I laughed was normal and everyone did it. Over the past few years my symptoms have progressed, most especially the EDS and cataplexy, but I believe the progression is due to other autoimmune issues I have been dealing with. I'm functional on meds (just dex) for the most part, but use a lot of the 'stay awake' tricks I developed before diagnosis, and just accept that sometimes I will just be groggy. One thing to keep in mind is that as time goes on, you may find that some things you have just gotten used to as a part of life, are also a part of being a pwn. A few personal examples are brain fog, stumbling over words, mumbling (we call it mush mouth in our family), difficulty with conversations as you struggle to find the right word or remember what you were trying to say, and being unable to turn off alarm clock on the days you actually hear it (turns out I go through morning cat attacks) to name a few. I'm fortunate to have a good support group around me that can see my droopy eyelids, hear my mush mouth, and know to ask me if it's time for my next dose. They are also good at helping me deal with other people that seem unwilling to even try to understand that no, a cup of coffee will not help me. It took some time to build that group, and a lot of info sharing to help them understand, but having people around who understand can sometimes make all the difference. (On a side note, I want to thank everyone on this forum. While this is my first post, I've discovered and rediscovered this forum a few times when I was having trouble with my n, and reading through your posts have always helped me through!)


Welcome disordered!
Your "medium" N sounds just like mine! I always buckle over when I laugh, I never thought it could be mild cataplexy...huh. I have noticed lately that I have trouble with finding the right word and I get distracted easily when I am trying to think of what I need to say. Before my N dx, I thought I was perhaps ADD. It is interesting how much can be affected by N. It is great that you have supportive people around you! I just moved to this town, so I am still at the trying to make friends stage. However my husband and kiddos are great. They are used to me being sleepy and they know I am trying meds that will help. They know I will have "good" days and "bad" days, just like before.... but hopefully I will be having more good days. Welcome again and I hope to see you around more!

#15 disordered

disordered

    Member

  • Members
  • 14 posts
  • Gender:Female
  • Location:WI

Posted 20 August 2009 - 02:05 PM

Welcome disordered!
Your "medium" N sounds just like mine! I always buckle over when I laugh, I never thought it could be mild cataplexy...huh. I have noticed lately that I have trouble with finding the right word and I get distracted easily when I am trying to think of what I need to say. Before my N dx, I thought I was perhaps ADD. It is interesting how much can be affected by N. It is great that you have supportive people around you! I just moved to this town, so I am still at the trying to make friends stage. However my husband and kiddos are great. They are used to me being sleepy and they know I am trying meds that will help. They know I will have "good" days and "bad" days, just like before.... but hopefully I will be having more good days. Welcome again and I hope to see you around more!


Thanks napnow! Yea, my mom's cataplexy is more textbook, so with her as an example, it never dawned on me that there could different degrees of cat attacks. For me, it's something my neuro and I are keeping a bit of an eye on as I've had some progression over the last year as well as a heightened sense of awareness of my particular symptom spectrum (the sleepier I have gotten, the more I have tried to focus on the details). So glad to hear your family is supportive and understanding! Not sure if you have ever heard of the spoon theory, but it really made a lot of sense to me and has been a huge help in explaining n to other people...maybe it could help you too. Here's the link: http://www.butyoudon...SpoonTheory.pdf In case the link doesn't work, you can find it on the But You Don't Look Sick website. Random side note: many n meds can give you dry mouth... pick up some gum! Hope to see you around as well!

#16 Nodding Narco

Nodding Narco

    Member

  • Members
  • 9 posts
  • Gender:Female
  • Location:Canberra, Australia
  • Interests:Music, Books, The Web, My Partner, My Dog's, Art in it's many forms, real people (like those here) not the plastic ones i seem to be surrounded by, Science and the pursuit of truth

Posted 20 August 2009 - 11:19 PM

Thanks napnow! Yea, my mom's cataplexy is more textbook, so with her as an example, it never dawned on me that there could different degrees of cat attacks. For me, it's something my neuro and I are keeping a bit of an eye on as I've had some progression over the last year as well as a heightened sense of awareness of my particular symptom spectrum (the sleepier I have gotten, the more I have tried to focus on the details). So glad to hear your family is supportive and understanding! Not sure if you have ever heard of the spoon theory, but it really made a lot of sense to me and has been a huge help in explaining n to other people...maybe it could help you too. Here's the link: http://www.butyoudon...SpoonTheory.pdf In case the link doesn't work, you can find it on the But You Don't Look Sick website. Random side note: many n meds can give you dry mouth... pick up some gum! Hope to see you around as well!



Thankyou so much for the link to The Spoon Theory

best way to describe how it is living with something that effects every aspect of your life to someone who has never had to think about things like that
thanks
The Nodding Narco

#17 disordered

disordered

    Member

  • Members
  • 14 posts
  • Gender:Female
  • Location:WI

Posted 25 August 2009 - 01:41 PM

Thankyou so much for the link to The Spoon Theory

best way to describe how it is living with something that effects every aspect of your life to someone who has never had to think about things like that
thanks
The Nodding Narco


No problem! Sad to say, but I actually teared up a little when I first found the spoon theory. Here was something I could actually use to help explain N to others, and it didn't make me sound crazy/lazy!

BTW: love the name and the superpower!

#18 napnow

napnow

    Member

  • Members
  • 23 posts
  • Gender:Female
  • Location:Lansdale, PA
  • Interests:I simply can't live without books!

Posted 27 August 2009 - 11:23 AM

Thanks napnow! Yea, my mom's cataplexy is more textbook, so with her as an example, it never dawned on me that there could different degrees of cat attacks. For me, it's something my neuro and I are keeping a bit of an eye on as I've had some progression over the last year as well as a heightened sense of awareness of my particular symptom spectrum (the sleepier I have gotten, the more I have tried to focus on the details). So glad to hear your family is supportive and understanding! Not sure if you have ever heard of the spoon theory, but it really made a lot of sense to me and has been a huge help in explaining n to other people...maybe it could help you too. Here's the link: http://www.butyoudon...SpoonTheory.pdf In case the link doesn't work, you can find it on the But You Don't Look Sick website. Random side note: many n meds can give you dry mouth... pick up some gum! Hope to see you around as well!



Thanks for the link! The spoon theory analogy is right on. There are times when I tell the kids that I have "hit my limit" and they know what that means.... that I have had enough and I need them to go to bed or I need to go to bed!