Comments for Wake up to Narcolepsy! http://wakeuptonarcolepsy.wordpress.com Sleepy Catkin's Comfy Corner - a site about Narcolepsy. Sun, 06 Jul 2008 16:08:05 +0000 http://wordpress.org/?v=MU Comment on So…what is Narcolepsy? by kimmikat http://wakeuptonarcolepsy.wordpress.com/2007/10/17/sowhat-is-narcolepsy/#comment-19 kimmikat Thu, 28 Feb 2008 12:16:47 +0000 http://wakeuptonarcolepsy.wordpress.com/2007/10/17/sowhat-is-narcolepsy/#comment-19 Hi Pollyanna. The scientists are divided about genetic inheritance. Some say that there is usually someone else in the family with narcolepsy and some say there is no evidence to prove a link. In my own case, I do think ,looking back ,that perhaps my father had narcolepsy. He was always struggling to stay awake, and refused to learn to drive because he said he would fall asleep at the wheel. As for Fibro links, again, nothing concrete, but it is known that Fibromyalgia patients have disturbed sleep patterns, so perhaps some of the symptoms would appear similar. I have recently taken part in some research by the Edinburgh Sleep Studies team, looking into what other illnesses or conditions are around in folk who have Narcolepsy. My brothers were asked to take part in this too, although neither of them have the condition. Scientists are trying to ascertain if there is a connection between certain conditions, or a prevalence of a condition when Narcolepsy is present. Sorry I can't help more. Thanks for stopping by and taking the time to comment Susie ;) Hi Pollyanna.
The scientists are divided about genetic inheritance. Some say that there is usually someone else in the family with narcolepsy and some say there is no evidence to prove a link. In my own case, I do think ,looking back ,that perhaps my father had narcolepsy. He was always struggling to stay awake, and refused to learn to drive because he said he would fall asleep at the wheel.
As for Fibro links, again, nothing concrete, but it is known that Fibromyalgia patients have disturbed sleep patterns, so perhaps some of the symptoms would appear similar. I have recently taken part in some research by the Edinburgh Sleep Studies team, looking into what other illnesses or conditions are around in folk who have Narcolepsy. My brothers were asked to take part in this too, although neither of them have the condition. Scientists are trying to ascertain if there is a connection between certain conditions, or a prevalence of a condition when Narcolepsy is present.
Sorry I can’t help more. Thanks for stopping by and taking the time to comment
Susie ;)

]]> Comment on So…what is Narcolepsy? by PollyAnna http://wakeuptonarcolepsy.wordpress.com/2007/10/17/sowhat-is-narcolepsy/#comment-18 PollyAnna Wed, 27 Feb 2008 13:01:25 +0000 http://wakeuptonarcolepsy.wordpress.com/2007/10/17/sowhat-is-narcolepsy/#comment-18 Thank you for writing your own experiences. This is very informative and in a down-to-earth manner, not boggling us with scientific or medical terminology. Do you know if research has found any genetic links i.e. can this or the linked ME/Fibromyalgia be inherited from a suffering parent? Thank you for writing your own experiences. This is very informative and in a down-to-earth manner, not boggling us with scientific or medical terminology.

Do you know if research has found any genetic links i.e. can this or the linked ME/Fibromyalgia be inherited from a suffering parent?

]]> Comment on About…this blog by Jane http://wakeuptonarcolepsy.wordpress.com/about/#comment-17 Jane Sun, 24 Feb 2008 11:56:30 +0000 #comment-17 Hi there! I have a blog for raising awareness for epilepsy, and your blog is the first I've found with the same kinds of aims as my own (even though epilepsy is completely different from narcolepsy). I don't tend to write in it often as I don't want to run out of things to say, normally it's about once a month, but your blog is definitely an inspiration to keep going with mine. Well done :-) Hi there!

I have a blog for raising awareness for epilepsy, and your blog is the first I’ve found with the same kinds of aims as my own (even though epilepsy is completely different from narcolepsy). I don’t tend to write in it often as I don’t want to run out of things to say, normally it’s about once a month, but your blog is definitely an inspiration to keep going with mine.

Well done :-)

]]> Comment on Lost Time by kimmikat http://wakeuptonarcolepsy.wordpress.com/2007/10/19/lost-time/#comment-14 kimmikat Sun, 25 Nov 2007 10:48:57 +0000 http://wakeuptonarcolepsy.wordpress.com/2007/10/19/lost-time/#comment-14 Hello Kate's Mum :) Thank you for your lovely comments. I'm sorry to hear about your daughter though. However, there is hope for the future. They think there is a cure on the horizon, so with a bit of luck your daughter may benefit from that.(I need to post the articles...still in the process of putting this all together). The provigil isn't doing much for me either, although it has reduced the daytime REM, which is good, but I am still just as sleepy. It is hard for young people when they are so tired all the time and trying to study. I know my marks would have been much better if I could have stayed awake, and had some degree of concentration and memory, but the three together are disastrous! I'm so glad you stopped by. Come back in a week or two and I might have expanded the information and added new poems etc. Best wishes to you and your daughter, Susie. Hello Kate’s Mum :)
Thank you for your lovely comments. I’m sorry to hear about your daughter though. However, there is hope for the future. They think there is a cure on the horizon, so with a bit of luck your daughter may benefit from that.(I need to post the articles…still in the process of putting this all together). The provigil isn’t doing much for me either, although it has reduced the daytime REM, which is good, but I am still just as sleepy. It is hard for young people when they are so tired all the time and trying to study. I know my marks would have been much better if I could have stayed awake, and had some degree of concentration and memory, but the three together are disastrous!
I’m so glad you stopped by. Come back in a week or two and I might have expanded the information and added new poems etc.
Best wishes to you and your daughter,
Susie.

]]> Comment on Lost Time by Kate http://wakeuptonarcolepsy.wordpress.com/2007/10/19/lost-time/#comment-13 Kate Sun, 25 Nov 2007 05:39:49 +0000 http://wakeuptonarcolepsy.wordpress.com/2007/10/19/lost-time/#comment-13 Using my daughter's email for now. The poem is very familiar sounding as my 20 yr. old has severe time lapses before during and after episodes that last from 1 to 20 hours. I pray for you and everyone out there to find some happiness and peace and keep up hope. The drugs they give my daughter don't work too well. Adderall XR, d-amphetimine salt and provigil. She has to be frustrated after two years. After reading your poem, I promise to be even more understanding and patient, I often over-reacted to the "I don't remember" phenom. before and after episodes. God bless all of you, he is trying to teach the rest of us something about real love for those in our lives that have narcolepsy. Keep posting your poems, they are wonderful! Using my daughter’s email for now. The poem is very familiar sounding as my 20 yr. old has severe time lapses before during and after episodes that last from 1 to 20 hours. I pray for you and everyone out there to find some happiness and peace and keep up hope. The drugs they give my daughter don’t work too well. Adderall XR, d-amphetimine salt and provigil. She has to be frustrated after two years.

After reading your poem, I promise to be even more understanding and patient, I often over-reacted to the “I don’t remember” phenom. before and after episodes. God bless all of you, he is trying to teach the rest of us something about real love for those in our lives that have narcolepsy. Keep posting your poems, they are wonderful!

]]> Comment on Lost Time by kimmikat http://wakeuptonarcolepsy.wordpress.com/2007/10/19/lost-time/#comment-11 kimmikat Sat, 20 Oct 2007 08:57:05 +0000 http://wakeuptonarcolepsy.wordpress.com/2007/10/19/lost-time/#comment-11 Thanks Poppy. They are not wonderful poems, but I hope they convey a sense of what narcolepsy is about. Thanks for popping by. It's appreciated :) Thanks Poppy. They are not wonderful poems, but I hope they convey a sense of what narcolepsy is about.
Thanks for popping by. It’s appreciated :)

]]> Comment on Lost Time by poppy http://wakeuptonarcolepsy.wordpress.com/2007/10/19/lost-time/#comment-10 poppy Sat, 20 Oct 2007 06:32:31 +0000 http://wakeuptonarcolepsy.wordpress.com/2007/10/19/lost-time/#comment-10 Really like the two poems you have posted here. Different from what I've seen of yours so far, but I like them very much. Can understand the panic loss of memory can give you. Really like the two poems you have posted here. Different from what I’ve seen of yours so far, but I like them very much. Can understand the panic loss of memory can give you.

]]> Comment on So…what is Narcolepsy? by kimmikat http://wakeuptonarcolepsy.wordpress.com/2007/10/17/sowhat-is-narcolepsy/#comment-9 kimmikat Fri, 19 Oct 2007 10:37:53 +0000 http://wakeuptonarcolepsy.wordpress.com/2007/10/17/sowhat-is-narcolepsy/#comment-9 Thanks Kay. ME / Fibromyalgia (many researchers think they are one and the same...just presenting differently in diferent patients) could well be confused. I have Fibro and had I not suffered from the sleepiness before contracting that, I may have though it was the fibro. However, cataplexy only presents in narcolepsy, so people with cataplexy will know it's narcolepsy. It's just trial and error, sleep tests etc, that define the condition eventually. And, there is nothing to say that folk can't have both or several similar conditions at once, thereby complicating diagnosis considerably. Many people do have several concurrent conditions. I will be writing about diagnosis and treatment shortly. Thanks for taking the time to comment :) Thanks Kay.
ME / Fibromyalgia (many researchers think they are one and the same…just presenting differently in diferent patients) could well be confused. I have Fibro and had I not suffered from the sleepiness before contracting that, I may have though it was the fibro. However, cataplexy only presents in narcolepsy, so people with cataplexy will know it’s narcolepsy. It’s just trial and error, sleep tests etc, that define the condition eventually. And, there is nothing to say that folk can’t have both or several similar conditions at once, thereby complicating diagnosis considerably. Many people do have several concurrent conditions.

I will be writing about diagnosis and treatment shortly.
Thanks for taking the time to comment :)

]]> Comment on So…what is Narcolepsy? by Kay http://wakeuptonarcolepsy.wordpress.com/2007/10/17/sowhat-is-narcolepsy/#comment-8 Kay Fri, 19 Oct 2007 08:08:07 +0000 http://wakeuptonarcolepsy.wordpress.com/2007/10/17/sowhat-is-narcolepsy/#comment-8 You're doing a good job here. It's very informative and evokes the condition well for people who haven't experienced it. Do you think narcolepsy could get confused with M.E.? I've known several people with M.E. and their symptoms appear, to the outsider, to be similar. You’re doing a good job here. It’s very informative and evokes the condition well for people who haven’t experienced it. Do you think narcolepsy could get confused with M.E.? I’ve known several people with M.E. and their symptoms appear, to the outsider, to be similar.

]]> Comment on Double Vision by kimmikat http://wakeuptonarcolepsy.wordpress.com/2007/10/06/hello-world/#comment-6 kimmikat Mon, 15 Oct 2007 11:22:52 +0000 #comment-6 Thank you Peter :) Possibly that's why I feel so overwhelmed at times, and frustrated because there is so much more I would like to do, if only I could work at normal speed. I just keep pushing myself, and I know I shouldn't, but I can't help it. It's nice that someone else appreciates the efforts. Thank you. It means a lot :) Thank you Peter :) Possibly that’s why I feel so overwhelmed at times, and frustrated because there is so much more I would like to do, if only I could work at normal speed. I just keep pushing myself, and I know I shouldn’t, but I can’t help it. It’s nice that someone else appreciates the efforts. Thank you. It means a lot :)

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