Check out the Narcolepsy Chats at:
TalkAboutSleep.com
Chats every Mon & Thurs
(check schedule for any changes)


Narcolepsy Message Board and Help Forum

Message board for narcoleptics, friends and family. Ask/answer questions...or just get it off your chest.

Mom with Sleep Apnea, Sleep disorders SQUARED

by Lorri (no login)


Sorry if this is duplicate posting - I wrote once, but not sure if it posted.

Recent sleep study showed Mom (post stroke) has sleep apnea, and may be the reason her
meds haven't been as effective.

She went thru the night long sleep study, then a second night of CPAP fittings etc.

The doctor listed all the reasons the CPAP mask would improve her life - fatigue, confusion, etc etc etc.

Mom listened to all of it...nodding...and then replied..

"Sounds good, but I want to wear the mask during the day, I think it will keep me awake at night."

Oh me oh my.... happy.gif Lorri




Posted on Sep 2, 2010, 7:42 PM

Respond to this message

Return to Index

Lorri

by (no login)

When it rains it pours...........I have OSA also...not to bad, but sleep with a CPAP too. They are really quiet at least my remstar is, but if your mom has any allergies, like I do....I sometimes find it running without the mask on my face. When your nose is plugged up, lets face it.........it's hard to breath. It will probably take her a little getting used to, but it will make a difference. With N we still fall asleep, no matter what, but she will probably feel a little less fatigued, plus the benefit of getting enough oxygen to her vital organs at night.....real important benefit!

Posted on Sep 2, 2010, 9:58 PM

Respond to this message

Return to Index


H1N1

by (no login)

Last night I talked to my daughter, who is a nurse in Portland. She had not heard anything about the articles that Phil reported to us about 4 days ago.
She e-mailed me a short time ago. She pulled up 3 or 4 articles about it and went to her division head. She had not heard anything either. Except that they would not be giving H1N1 at their hospital. (no reason was given)

Thanks again Phil, and my daughter thanks you.
GEM

Posted on Sep 1, 2010, 5:29 PM

Respond to this message

Return to Index

Re: H1N1

by (Login patlittlejohn)
Moderators

I believe that "brand name" vaccine might have been exclusively (?) in use in the countries in question, though.

Posted on Sep 2, 2010, 11:03 AM

Respond to this message

Return to Index


re: NIHI

by (no login)

GlaxoSmithKline makes the vaccine and they distribute drugs to the us also.

Posted on Sep 3, 2010, 1:00 PM

Respond to this message

Return to Index


H1N1

by cassk (no login)

Isn't it ironic how I was convinced to get the shot up here in Canada because I'm narcoleptic?

Posted on Sep 4, 2010, 11:04 AM

Respond to this message

Return to Index


Re;

by GEM (no login)

Its great for us! It can't give us N.

Posted on Sep 5, 2010, 3:05 AM

Respond to this message

Return to Index


H1N1

by (no login)

H1N1 was such a farce. I knew two people who had it. One had a mild case, the other compared it to any other bad case of the flu.

Posted on Sep 5, 2010, 9:39 PM

Respond to this message

Return to Index


wait and see

by phil (no login)

http://www.webwire.com/ViewPressRel.asp?aId=122458

Posted on Sep 6, 2010, 8:07 AM

Respond to this message

Return to Index


Re: wait and see

by (Login patlittlejohn)
Moderators

This will be interesting: Lots of "test" subjects, and a www of exposure for the results. There will be literally millions of minds processing information in one way or another, and might lead to some breakthrough jumps of knowledge.

Posted on Sep 6, 2010, 9:54 AM

Respond to this message

Return to Index


Migraine connection

by (Login patlittlejohn)
Moderators

We know some of us seem to have a migraine connection, and I think ruling out coincidence and chance (by per capita incidence)

there does seem to be a genetic factor here

http://in.reuters.com/article/idUSTRE67S1PN20100830

Posted on Aug 31, 2010, 4:16 PM

Respond to this message

Return to Index

ooops

by (Login patlittlejohn)
Moderators

I think I mean population or something, well "capita" means something monetary

Posted on Aug 31, 2010, 4:17 PM

Respond to this message

Return to Index


Re;migraine

by (no login)

Very seldom do I ever get a headache. I am the only one in my family to get the Big prize!

guess I am just odd.
GEM

Posted on Aug 31, 2010, 8:03 PM

Respond to this message

Return to Index


re: migraine

by (no login)

I hardly ever get headaches except for sinus once in a while, but my middle daughter that also has N w/o cataplexy, get migraines all the time.

Posted on Aug 31, 2010, 11:12 PM

Respond to this message

Return to Index


headaches

by cassk (no login)

I've always gotten headaches, some days they're just light, some days they're quite a bit worse to where my head is throbbing or its heading down the back of my neck... but I rarely get what I think actually count as migraines?

Posted on Sep 1, 2010, 12:25 PM

Respond to this message

Return to Index


In The News

by (no login)

If its breaking news about Narcolepsy, don't expect to read about it in the local, or regional news!
Read it here as brought to us by Phil.

When it comes to computers, I am light years behind. I really appreciate what you do, and truly thank you.

GEM, Creswell, Oregon

Posted on Aug 29, 2010, 11:14 PM

Respond to this message

Return to Index

re: in the News

by (no login)

I second that!! I'm not much of a web surfer myself. I have a hard enough time keeping up with FB, email, Ancestery.com and this site. At least they keep me busy on the nights I'm up, which is just about every night.

Posted on Aug 30, 2010, 3:45 AM

Respond to this message

Return to Index


Re: re: in the News

by (Login patlittlejohn)
Moderators

Pam, it is time for a "cycle" of feeling better and sleeping better for you.

I really appreciate the science searching that Phil does, too.

Seriously, if we are going to be any help to each other, we have to really know what is going on. Too little knowledge about N has been our nemesis for too long.

Thank you, Phil!

Posted on Aug 30, 2010, 10:04 AM

Respond to this message

Return to Index


no summer ?

by phil (no login)

here I am in portland or. and the garden is a disaster. we had no summer, I just can't believe it

Posted on Aug 28, 2010, 11:46 AM

Respond to this message

Return to Index

Re summer

by (no login)

I agree! It was so late getting over the rains that we could not rototill the yard until it was to late. We ended up planting some corn in a raised bed but not very much. We have one red tomato, two orange ones, and the rest are green. The temps are dropping off so this will make it tougher.

Posted on Aug 28, 2010, 1:17 PM

Respond to this message

Return to Index


Re: Re summer

by steve shannon (no login)

must be global warming...happy.gif

Posted on Aug 28, 2010, 10:48 PM

Respond to this message

Return to Index


I sure dont get it:

by (Login patlittlejohn)
Moderators

So many places it was the hottest on record, or since 1880. I sure dont want to see any more so hot.

Posted on Aug 30, 2010, 10:01 AM

Respond to this message

Return to Index


re: vacines

by (no login)

just bringing this thread forward....

I'm certainly not against giving vacinations, but..........Phil has a point...maybe they can do some HLA testing, I too had a bad reaction to the small pox vacine when I was in grade school.

Half the population carries the genetic markers for N, but only some of us get the disorder.....there are just so many variables that it will probably be impossible to pin point the trigger just given each individuals unique make up....but there just maybe a commonality in certain vacines, like the N1H1, that will trigger N.

Posted on Aug 27, 2010, 1:29 AM

Respond to this message

Return to Index

Re: re: vacines

by (Login patlittlejohn)
Moderators

Especially now that autoimmune has been highlighted, our own cellular self-destruction.




Posted on Aug 27, 2010, 9:26 AM

Respond to this message

Return to Index


Re: re: vacines

by Lynne (no login)

i never had the smallpox vaccine or the swine flu vaccine...so i disagree with this whole post LOL

Posted on Aug 27, 2010, 8:20 PM

Respond to this message

Return to Index


RE: RE: RE

by (no login)

Let me turn the light on once again:

I've never had the swine flu or the vaccine, I'm allergic to the mercury preservative.

However...according to the post of Phil's, if you read the research...there has been an increase of cases of narcolepsy symptoms of children between the ages of 10-16.

This is just another validation to the theory that a bacterial or viral infection or possibly the result of an immunization can trigger narcolepsy in some people. Children that have been diagnosed at a young age, say less than 10 yrs, that have participated in a narcolepsy research program, have been found to have large amounts of antibodies to the strep bacteria. This gathering of information is important in finding the cause or causes of narcolepsy. There is probably many triggers, just as each and every one of us has a different immune system.

Posted on Aug 28, 2010, 9:15 PM

Respond to this message

Return to Index


vaccination stopped

by phil (no login)

http://uk.news.yahoo.com/21/20100827/tuk-swine-flu-vaccine-narcolepsy-link-6323e80.html

On Tuesday, Finland's National Institute for Health and Welfare recommended that vaccination with Pandemrix be stopped until the suspected link with narcolepsy had been thoroughly evaluated.

Posted on Aug 29, 2010, 11:59 AM

Respond to this message

Return to Index


australia also

by phil (no login)

http://www.examiner.com/family-in-seattle/seattle-h1n1-flu-vaccine-recalled-for-seizures-kids-europe-how-safe-is-it-for-your-kids

Posted on Aug 29, 2010, 2:13 PM

Respond to this message

Return to Index


Re: re: vacines

by ev (no login)

scary stuff all this.Having N already,this wouldn't effect me but for others getting the shot and running risk of N or other bad medical outcomes from it would be terrible. Not an easy one this because of the people whom really need to have the shot,take an unknown risk. Scary once again.

Posted on Aug 29, 2010, 5:34 PM

Respond to this message

Return to Index


video thing

by phil (no login)

http://patients.aan.com/go/about/neurofilmfestival

Posted on Aug 25, 2010, 12:12 PM

Respond to this message

Return to Index

videoness

by cassk (no login)

I think this sounds pretty interesting! I just don't really want to be on a video across youtube in my first year of university... I just want a chance to be "Cassie" before "The Narcoleptic", know what I mean?
I did put up the link on another site though, and no one there seemed interested either. I was kind of disappointed. Even if they didn't win, if someone got a decent video up, they could get the word out a bit more. But as my first couple sentences say, I totally understand not being comfortable being ona video.
You know that show a week ago on Nightline? I saw it discussed on pages in other languages! Whenever I looked up narcolepsy news for the next few days, it was another site or news channel or something talking about this show. One person's story was discussed on one third of a show, and suddenly a lot more people seemed to be talking about it..
I read something the other day about how years ago talking about Breast Cancer was just not something that happened a lot. It was kept fairly quiet. Now, it's all over the place.. It had to start somehwere, right?

Posted on Sep 1, 2010, 12:23 PM

Respond to this message

Return to Index


moody

by (no login)

I can deal with being sleepy most of the time. I enjoy naps sometimes I sleep all night and all day (I do wake up about every two hours but go right back to sleep). People do not understand how I can stay in bed and sleep. The only times that it bothers me to be sleepy is when I am driving, and when I have somewhere to be. I have left work to go to the doctor and gotten so sleepy that I barely get home, and then it takes everything I have to get in the house. If I do lay down I usually miss my appointment if there is no one to get me up. I am so sleepy I will hit the alarm and eventually turn it off. Right now the thing that bothers me the most is my mood swings in the past year they have gotten worse. I can be doing great and staying busy one minute, but let me get the least bit sleepy and I am angry at everything and do not know why. That is everyone's favorite question what is wrong, and why are you upset you were fine a minute ago.The one that I will always hear from someone is are you bipolar. It is awful to feel so crazy sometimes. I have a stressful job and work long hours. My doctor says that I am not crazy I need to try and schedule some naps during the day.I do not know if it is the n or my age or everything in life. I have been like this for three days I get exhausted but wont lay down and go to sleep because I am afraid I will take a long nap and be awake for 2-3 hours. I know that it could be worse and not go back to sleep at all. I just wish I could I could find away to deal with this. I do not have an easy time dealing with something I cannot fix. And this is apparently not going away,it is very frustrating. Because I know it is not the worst thing that I could be dealing with. People do not understand that I don't want pity I want patience and for people to quit calling me lazy or crazy. I think if I did not have the pro vigil I would truly lose my mind. Thank you for letting me vent.

Posted on Aug 24, 2010, 5:14 PM

Respond to this message

Return to Index

re: moody

by (no login)

First of all we are FEMALE! (that's what my husband says)

I relate to this frustration. I have fragmented sleep at night, usually I go right back to sleep, but sometimes I have to get up for a while. We just don't get good sleep and thus we suffer from sleep deprivation despite how many times we fall asleep and most normal people can't understand this. I think our mood has to do with this. How can a person be in a good mood when you are always sleepy. It is frustrating to us not being able to work without those annoying symptoms of narcolepsy always taking over. It's really hard to live up to those expectations of normalcy, that everyone else takes for granted. Give yourself a break and your friends and co-workers all the info you can print out on narcolepsy.

Posted on Aug 24, 2010, 11:16 PM

Respond to this message

Return to Index


diff meds

by phil (no login)

have you tried different meds ?

Posted on Aug 25, 2010, 12:22 PM

Respond to this message

Return to Index


like a 3 year old

by Bulldawg (no login)

I know when I get sleepy and can't lay down I feel like I'm 3 years old getting ready to throw a tantrum.

Posted on Aug 25, 2010, 3:33 PM

Respond to this message

Return to Index


vit D autoimmune

by phil (no login)

http://www.medicalnewstoday.com/articles/198681.php

Posted on Aug 24, 2010, 1:26 PM

Respond to this message

Return to Index

re: vit D autoimmune

by (no login)

I've been reading alot about vit D this past year. My doctor prescribed me vit D3 50.000 units for three months last year. I was quite shocked to find that I was deficient, especially spending the winter in the AZ sun for hours a day w/o sunscreen for the early morning hours only. (I have a history of skin cancer, even though I grew up in Portland, land of the rain). One of my friends in AZ, her sister is a bio-chemist and has written several research articles on vit D, I have read her research. It is very interesting and on the same lines as Phil's post. I have a large calcium intake and have good bone density, no osteoporosis, so you would think I would have enough vit D, which is needed to absorb the calcium. It's all to confusing to me.

Posted on Aug 28, 2010, 9:25 PM

Respond to this message

Return to Index


Re confusing

by GEM (no login)

Pam, the only thing more confusing to me is the weather forecasters. They are the only ones that get there answers wrong, more often than the med department.

Posted on Aug 30, 2010, 10:31 AM

Respond to this message

Return to Index


dfgtgdf

by phil (no login)

http://www.helsinkitimes.fi/htimes/domestic-news/general/12145-thl-investigating-link-between-swine-flue-vaccine-and-narcolepsy-.html

http://www.yle.fi/uutiset/news/2010/08/vaccine_expert_doctors_withheld_narcolepsy_symptoms_1919879.html

Posted on Aug 24, 2010, 1:45 AM

Respond to this message

Return to Index

fghh

by phil (no login)

http://www.google.com/hostednews/afp/article/ALeqM5h5ZbQ8C7x5CzyB1-CeJ5s7RCnATA

Posted on Aug 24, 2010, 1:47 AM

Respond to this message

Return to Index


another late night......

by (no login)

and up for the second time at 2:30 am. Yawning and tired, but up, hoping to wear myself out enough to sleep another couple of hours.

One of the things that irritates me the most about narcolepsy, besides not being able to get a good night sleep and falling to the ground, is the social aspects of it. Most people take for granted most of what we have to suffer for and live with daily. Every decision we make every single day is based around our disorder. We can't just hop in the car to go to the store whenever we want or let alone take a long Sunday drive. Going to the movies is out of the question, even on Nuvigil! Those closest to us, who half way understand, tend to walk on eggshells around us, trying not to make us laugh or make us mad. Being right next to the river, I love to swim, but unless I have someone with me, I can't chance having a cataplexy attack and possibly drown. Everything we do is a constant reminder of our disorder.

Now that the years have slowly creeped up, I worry of the physical changes we experience and the affect of narcolepy on those. I think, Ted, Pat,Phil, Melody, Scarlet and many more of us that are fifty and older, should write a book or something on aging and narcolepsy. I've never read anything that deals with that topic. I think living alone with narcolepsy is not a good thing when you are older, as we have seen by Lorri's experience with her aging mother having a stoke and also dealing with narcolepsy. Not much for us to look forward too.

This what I love about this site. You can have one of those late night ramblings and not feel to weird about getting it off your chest because your with people who understand. Thanks! happy.gif

Posted on Aug 21, 2010, 3:35 AM

Respond to this message

Return to Index

Aging

by (no login)

Pam, I like your answer to the caffine post, I think that it fits here also.
It would scare the c--p out of me if I was in my 20's and thought all I had to look forward to was some of the story's aired by us.
Thankfully we differ in our symptoms and our progression. The most important thing for a younger narcoleptic to learn is, to "deal with it". Most conditions or illness advance through the same paths to a predetermined conclusion. We on the other hand have some hope that our paths our not all the same. We may continue to get worse, but sometimes they change for the better. We always have the hope that Tomorrow, will be a good day.
People in stores and everywhere are always saying "have a good day".
My answer has become, "every day is a good day".
We need to share our experiences, both good and bad. Youth has faith and hope that they will not end up like this. I would not have wanted to believe how we may end up. At the end of the day we can say, I love and was loved by friends and family.

just a friend, Ted

Posted on Aug 21, 2010, 7:39 AM

Respond to this message

Return to Index


re: aging

by (no login)

I know what you mean, and I don't want to scare the begebbers (sp? generational old term) out of the younger ones. We are all different and not every narcoleptic will have worsening symptoms. But.....having been a Girl Scout I always am prepared for the worse, force of habit. I just know I want my girls to be as informed as Lorri is about narcolepsy, so when something happens to me, I have a good advocate by my side and the doctors aren't pulling the wool over their eyes.

Posted on Aug 21, 2010, 6:43 PM

Respond to this message

Return to Index


My FRIEND, Ted

by (Login patlittlejohn)
Moderators

You have taught me that a friend is the greatest.

I 'kind of' knew that when I was 20, and my friends were very precious to me~! Still...

I didnt know yet about the human victory that would be now.

Posted on Aug 22, 2010, 10:19 AM

Respond to this message

Return to Index


Re: another late night......

by (no login)

I am lucky that my symptoms do not include cataplexy, I mainly get sleepy all of the sudden. My worst complaint is how I wake up mad or scared and no one understands why(even me).I am a welder and have allot of support from my coworkers if I look really tired they will inquire about if and when I took my pro vigil, then they keep an eye on me until I get somewhat alert and start talking sense. They also remind me at least an hour before getting off work to take my medicine so I have a chance of making it home without pulling over on the side of the road for a nap.I have a wonderful husband that has been with me since I was diagnosed so he understands as much as he can or wants to. As much as I love him I get so tire of hearing its okay don't worry about it, that I should not worry about things I can't change(that really does not help). He does not actually support me as much as avoid me sometimes. He is really good about checking on me if I am not home within 5 minutes of my regular time. But nights like tonight when I am still up and going and I have to get up at 330 in the morning he does not understand, even though I can fall asleep almost instantly when I get ready (unless I am in pain or worried). I am sorry for going on so much it is just one of those nights. Thank you for letting me write.

Posted on Aug 21, 2010, 7:51 PM

Respond to this message

Return to Index


re: another late night.....

by (no login)

Victoria.....you don't have to apologize for posting or rambling on, that's what is nice about this board, we are all in the same boat together.....lets face it; it just feels good to vent once in a while....we understand.
(I do it quite a bit!)

My husband and I have been married over thirty years and I still get the same reaction from time to time. My husband goes to bed fairly early and he can't understand if I can't go to bed that early. I still here, "if you would go to bed earlier you could get some good sleep and you wouldn't be so tired in the morning". It just doesn't work that way. I have fragmented sleep at night, I wake up or get up every 2-3 hours, he doesn't know it because he is getting his 8 hours of sleep in a row, enjoying the stages of restorative sleep I miss out on. We can be visiting with friends away from home and I have to give him the sign that we need to leave because I can't stay awake and yet when we arrive at home I might not be sleepy anymore and stay up a while longer; he just doesn't get it!


Remember you are not alone, we all understand. Maybe have him read some of the posts, he may better understand the disorder and that it's not just you that experiences these symptoms.

Posted on Aug 21, 2010, 10:15 PM

Respond to this message

Return to Index


Re;

by (no login)

This is what this site is about! The best help you can get is "information".
By you telling your problems, and and your conditions you are giving us information. Its a trade and it benefits us. I have never heard anyone describe their N. that matches my symptoms and problems. Yet we have enough people so that any thing you experience, has been described by some or most of us. If we can't give you an answer we have some that can direct you in the right direction.

Sometimes this site looks pretty quiet, especially weekends. Someone is always out here listening, just give a shout.
GEM, Oregon

Posted on Aug 21, 2010, 10:52 PM

Respond to this message

Return to Index


Don't be afraid of the river

by Lorri (no login)


Your post about living by the river really struck me. Please don't deny yourself the enjoyment of daily living, but consider a "noodle" or some flotation nearby?

I didn't want my posts re: Mom's journey to scare anyone -- but cause a "pause to think" moment.

Mom lived independently until her stroke at age 73 (when returning from Vegas). Until the stroke she worked out 5x per week, played bridge 5x per week, worked 3 days a week and danced 3 nights per week. She was a convertible driving shopping addict -- and she was living alone. She never told anyone that she had narcolepsy, so cataplexic events would come as a surprise. That doesn't mean she didn't have them - she never explained them happy.gif

Aging isn't necessarily a challenge for narcos, but medical complications are. My sister and I made the decision (fought for it) to give mom her meds through a feeding tube. You might want to include instructions regarding those decisions in your living will or advance directive.

One thing for sure...many medications prescribed for conditions experienced by natural aging (from blood pressure to urgent bladder) can cause fatigue. Make sure your doctor/family files keeps that in mind.

Keep swimming! happy.gif L







Posted on Sep 2, 2010, 7:26 PM

Respond to this message

Return to Index


nightline

by phil (no login)

watched that nightline prime show on abc last night there was a segment on a neuroscientist that lives in portland or it was good cataplexy has ruined his love life

bbc news today HLA gene ass with narcolepsy and MS also ass with parkinsons (0602)

Posted on Aug 20, 2010, 5:12 PM

Respond to this message

Return to Index

re: nightline

by (no login)

I had it written down on my calendar, but when it was on I was asleep, Bob forgot to wake me up, but he probably just didn't want to watch it.

Posted on Aug 21, 2010, 2:47 AM

Respond to this message

Return to Index


not the whole show

by phil (no login)

http://abcnews.go.com/Nightline/Sleep/oregon-man-paralyzed-feelings-love/story?id=11410135

Posted on Aug 21, 2010, 4:59 PM

Respond to this message

Return to Index


more

by phil (no login)

http://abcnews.go.com/Nightline/video/miss-making-11442014

Posted on Aug 21, 2010, 5:11 PM

Respond to this message

Return to Index


re: more

by (no login)

I realize this is only a couple of clips, but it seems that the narrator, didn't mention that he had narcolepsy/cataplexy, just "paralysed by love". It really didn't do any of us justice in getting the message out regarding this disorder. Cataplexy is only ONE aspect of the disorder.

Posted on Aug 21, 2010, 6:37 PM

Respond to this message

Return to Index


theme

by phil (no login)

it was part of the theme of the show sometimes stuff happens to love

in a different part of the show they show you a female doctor whos husband was injured in an auto accident and lost his permanent memory

Posted on Aug 21, 2010, 7:42 PM

Respond to this message

Return to Index


re: theme

by (no login)

I know my impression was out of context, so my comment was not valid in the context of the show......my friend Lori that lives just down the street from you, Phil, called me tonight, because she watched the show. She is one friend that totally understands about narcolepsy and is always calling about my well being. She is just so afraid of my cataplexy and that I will eventually seriously hurt myself and of course wondered if the emotion of love gave me cataplexy like the guy in the video. That seems a little unuall to me and I don't experience that kind of trigger, but as we said before, we are all different. I know if I felt that sleepy and thought I was going to have a cataplexy attack, I would not have been able to walk up all those stairs to the bed room, my butt would have already been on the floor.

Posted on Aug 21, 2010, 10:26 PM

Respond to this message

Return to Index


Re;Cataplexy

by (no login)

My wife and I have been married for 32 years. I can not think of a better mate and I love her dearly. My c. is brought on by emotions and is very mild compared to Pam, Pat, and most others. I think of it as stuttering only in your muscles instead of voice. I do not go to the ground, and sometimes a lot of other people might not notice. I suddenly found that some of my c. was brought on just by feeling strongly about something we were talking about.
I had a hell of a time trying to convince her that I was not getting mad at her, and having the attack as a result. Now I make a point of telling her that I just was feeling strong emotions about the subject. This way she does not get the feeling that I am ticked off at her.
It really has to be tough living with us. She has to watch for my depression, my bad nights with little sleep, watch for automatic behavior when I drive us somewhere. It goes on, and she adjusts to most of my problems. You can see why I love her so much.

Posted on Aug 21, 2010, 11:24 PM

Respond to this message

Return to Index


re

by phil (no login)

I have a good sense of humor rarely get c from it but anger can make a serious c problem and sometimes in order to survive I go into what I call viking mode

I do have a problem very similar to the guy Matt on the nightline show as far as love goes

I do not like being startled at all

I think the guy in the nightline show should try codeine phosphate and estrogenglycerophosphate and if the medical morons in portland were not deaf that show would not have been made because his love life would be fine

alot of things can cause c infections, over working, no apparent reson at all

I wonder how many have had white lite c

Posted on Aug 22, 2010, 11:54 AM

Respond to this message

Return to Index


re: re

by (no login)

Maybe that guy should try mornings instead of evenings. I found the remark his wife made about just having sex, he's ok, but making love he can not and has his cataplexy attacks. This confuses me.

I know there are different triggers for everyone. Our personalities are just different and we react differently to stimuli. I don't have a problem with just a good laugh at a joke, but its when something spontaniously is said, like very wittingly, that will drop me in a second. I have a problem too, with anger. When Bob and I get in a little disagreement, he might say something to me in a way that really ticks me off, even if I don't respond verbally and just think it, I will have a C attack and down I go.

I just found the clips of that show, kinda on the strange side. It really wasn't very well done. The interviewer didn't do her homework.

Posted on Aug 23, 2010, 10:42 PM

Respond to this message

Return to Index


Irregular Periods

by phil (no login)

the theme was love not narcolepsy

I read a book, female medicine the doc remarked how common it was for narcoleptic women to have Irregular Periods and the high doses of estrogen it took to help and the earlier they came down with narcolepsy the worse it was

ESTRGEN ESTROGEN ESTROGEN

Posted on Aug 24, 2010, 2:26 PM

Respond to this message

Return to Index


estrogen

by cassk (no login)

I was completely "regular" until they dosed me on a mass of estrogen in birth control.
Wow was that ever a disaster.
I've never fully been able to get back to the emotional strength I had before it, and I don't know if it was because of the BC (I know it also has to do with EDS getting worse, stress, and stuff, but its weird that it happened to change at that time?).
Now I'm still struggling to get back to "regular".
Which doesn't help to stress levels when you can't take BC and CANT get prego, and then suddenly it doesn't come on time.

Posted on Aug 24, 2010, 11:43 PM

Respond to this message

Return to Index


narcoleptic dogs

by phil (no login)

remember the narcoleptic dogs they try to have sex and have cataplexy

Posted on Aug 24, 2010, 3:16 PM

Respond to this message

Return to Index


cowgirl sex

by phil (no login)

shes on top he does not usualy have much fun

she does the work she has the fun

Posted on Aug 24, 2010, 4:48 PM

Respond to this message

Return to Index


Re: cowgirl sex

by ev (no login)

hehe!probably true that!

Posted on Aug 24, 2010, 11:51 PM

Respond to this message

Return to Index


caffeine

by (no login)

I was just wondering about caffeine. I have try to cut all caffeine out even tea and chocolate (It is almost painful). I have been even more sleepy in the past two weeks.Do I have to cut caffeine totally out. Because I can usually fall asleep pretty quick unless I am stressed. I would appreciate any feedback thank you.

Posted on Aug 19, 2010, 8:12 PM

Respond to this message

Return to Index

caffine

by (no login)

I was diagnosed in 1967 or 68. I was in my 20's and never had any signs until the winter before I found out I had N. I am 70 now and I am one of the lucky ones. My symptoms changed little over the years. I have mild cataplexy, I sag, but do not go to the ground. I managed to hang on to my jobs and made it to 6 months before retirement. Then I had it. I quit and signed up for S.S.
I was never told to avoid Caffine, and I have always drank a lot of coffee to help me stay awake. I have been on Desoxon and Dexadrine for the whole time.
If I quit my coffee by 6:30 in the evening It does not bother me.
My sleep habits have gotten worse over the years until I do not get more than 5 hours. I go right to sleep but do not sleep for long 1 to 2 1/2 hrs. Up for 30 min, then it starts over again. I am usually up 3 times and sometimes 4 times.
I tried going without coffee, but it did not change my sleep patterns. After a week I went back to my coffee.
You have to find what works best for you. We give up so much in our lifetime that we hang on to what ever we can. What works for me may not help you at all. Good luck, just remember, if we do not have the right answer We do understand the problems. We can listen and some times that helps
Ted, GEM, Oregon

Posted on Aug 19, 2010, 9:13 PM

Respond to this message

Return to Index


Re: caffine

by (no login)

Thank You I was told in 2003 that I had mild n or rls.I did not go to the doctor for almost 4 years because of insurance. When I went back recently and to the sleep study he said I do have n not rls. I get sleepy all the time but if I am busy it does not bother me as much. But it only takes a few moments when I get still. My worst problem is driving. My doctor just said watch the caffeine.But I am more tired than ever now I think I will start drinking tea again because I rarely have trouble getting to sleep.

Posted on Aug 20, 2010, 3:24 PM

Respond to this message

Return to Index


Re: caffeine

by (Login patlittlejohn)
Moderators

I dont know who advised you, but you are the best judge. Without caffeine I am a basket case.

Posted on Aug 20, 2010, 8:41 AM

Respond to this message

Return to Index


RLS

by phil (no login)

http://www.rls.org/Page.aspx?pid=543#8

9. Are there any substances that should be avoided?

The use of caffeine often intensifies RLS symptoms. Caffeine-containing products, including chocolate and caffeinated beverages such as coffee, tea, and soft drinks should be avoided. The consumption of alcohol also increases the span or intensity of symptoms for most individuals.


Posted on Aug 20, 2010, 11:49 PM

Respond to this message

Return to Index


re: caffeine

by (no login)

I'm with Ted and Pat on this one. Everyone has to do what works best for them. Caffeine has the opposite effect on me so I avoid it, plus I have high blood pressure and caffeine raises blood pressure.

Posted on Aug 21, 2010, 2:51 AM

Respond to this message

Return to Index


Re: caffeine

by Steph (no login)

My sleep dr has advised me to limit caffeine, and not have any after 12 noon. I try to stick to this since I would rather focus on getting as best nighttime sleep as I can. Though the odd time sitting at a desk in the afternoon I get a coffee and it doesn't seem to bother me too much. Do what works for you. I could not do without coffee every morning.

Posted on Aug 22, 2010, 6:45 PM

Respond to this message

Return to Index


Thank You

by (no login)

Thank you for all the messages. I am a little nervous about posting messages but I will get the hang of it soon. I am 38 years old and live in Alabama. I am a certified welder and work long hours at the end of the month. I would never make it with out provigil I currently take 200mg twice a day and still get sleepy. I tried to get on one of the chat rooms but could not get it figured out in time I will try again later.Again thank you for all the friendly messages.

Posted on Aug 19, 2010, 8:07 PM

Respond to this message

Return to Index

vaccine and narcolepsy

by phil (no login)

http://www.google.com/hostednews/afp/article/ALeqM5h5ZbQ8C7x5CzyB1-CeJ5s7RCnATA

Posted on Aug 18, 2010, 6:22 PM

Respond to this message

Return to Index

Re: vaccine and narcolepsy

by (Login patlittlejohn)
Moderators

Thanks, Phil.

Actually not surprised much, could pharmaceutical and immunization moves on regional and global scales be part of "clusters" like this?

I wonder if something like vaccination or a flu epidemic would account for "bulges" in our numbers, of narcoleptics... age 45 to 65, and some between 15 and 25?

Posted on Aug 19, 2010, 11:48 AM

Respond to this message

Return to Index


histor of narcolepsy

by phil (no login)

in the seventies I read a paper on the history of narcolepsy that was like the movie awakenings they said swine flue left santoriums full of people that either had symptoms of parkisons or narcolepsy

that on girl in that narcolepsy movie just plain said it was the vaccine

Posted on Aug 19, 2010, 7:51 PM

Respond to this message

Return to Index


re: vaccine and narcolepsy

by (no login)

Just one more piece of evidence that links the possibility of vaccines to narcolepsy!

Posted on Aug 21, 2010, 2:55 AM

Respond to this message

Return to Index


Re;vaccine

by (no login)

Is anyone out here that can remember seeing a child with leg braces?
How about a person living in a large machine, with only his head outside?
I personally would not trade my N. in exchange for seeing Polio victims again.

Posted on Aug 22, 2010, 11:39 PM

Respond to this message

Return to Index


polio

by phil (no login)

my father was in an iron lung all I can say is maybe you could come up with a slightly different vaccine

he did better in life than me

Posted on Aug 23, 2010, 12:52 AM

Respond to this message

Return to Index


HLA

by phil (no login)

maybe we should all be HLA tested then a few would be excluded from a particular vaccination

I had to get a smallpox veccination to go to college and had a bad reaction, next year when my younger brother was in same posittion the doc resused and sent college letter saying not this person

Posted on Aug 23, 2010, 12:35 PM

Respond to this message

Return to Index


Re;Polio

by GEM (no login)

Please except my apology, I spoke from my very limited knowledge.
Ted, Creswell Oregon

Posted on Aug 24, 2010, 12:18 AM

Respond to this message

Return to Index


Re: Re;vaccine

by Lynne (no login)

i am with you GEM...the diseases that the vaccines prevent are 100 times worse than N...a little girl lived next to me with polio. i also would rather have NOT died from any of the diseases that vaccines prevent. i don't go get a pnuemonia or flu shot, but the basic child vaccines are a necessity.

Posted on Aug 27, 2010, 8:15 PM

Respond to this message

Return to Index


 Copyright © 1999-2014 Network54. All rights reserved.   Terms of Use   Privacy Statement  


Our Picture Album