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Narcolepsy Message Board and Help Forum
Message board for narcoleptics, friends and family. Ask/answer questions...or just get it off your chest.
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.
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.
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.
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?
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.
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.
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.
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!
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.
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.
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.
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.
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.
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
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.
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.
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.
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.
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
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.
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
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.
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.
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
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.
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.
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.
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.
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.
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.
I am a 22-year-old male who had narcaleptic-like syptoms after surgery for an appendectomy. After two years, I transferred to France for 6 months to see if a change of scenery would help. After two weeks of living and working in France, my symptoms disappeared. Five months later, I returned to the U.S. feeling fit, not sleepy, and still full of energy. I just assumed that at long last I was fully recovered from the appendectomy. A few healthy weeks later, I required oral surgery. My mother, who was with me, asked about the anasthesia because she always believed my issue was related to the anasthesia somehow. The dental surgeon assured her that the amount of dosage used in oral surgery was so low that it could never harm your brain. Within a few days after the oral surgery, I developed narcaleptic-like symptoms which were far more pronounced and have, in fact, debilitated me...I need to sleep every couple of hours so I am taking naps on the floor of our conference room mid-day so that I can get through the rest of the work day. I have always been an ultra-fast worker and I feel like my speed is slow at best. I fell asleep at the wheel of my car and caught myself at the last second! I have not driven since then. I was talking to a friend and fell asleep as she talked. I was taking a course at night which I now have had to drop, as well as some of my late-night outings with friends. I have been preliminarily diagnosed with narcolepsy and am awaiting the results of a sleep study and no genetic testing yet but I have every sympton of narcalepsy listed in your website so I know that is what it is. I've read many articles on this disease and, as a pre-med student I am convinced that there is a connection between the killing off of the protein hypocritin cells and the administering of anasthesia. Is there anyone else out there who had their first bout of narcalepsy after surgery?
I developed symptoms of N when I was about 17. Had EDS for about twenty years. At 45 I had hysterectomy, then two shoulder surgeries....since the surgeries I developed all the other symptoms including cataplexy (falling to the ground kind). I agree that anasthesia may play a role in making symptoms worse.
Don't you just love it when you drag around all day. Cant get "into" anything, cant stay alert, cant sit for 5 min. without zzzzz. 2nd. night this week!
Went to bed at 10:00, here it is 2:00 and I have been asleep for 20 min.
I usually am up by 6:30, and can't stay in bed past 8:00, so that means another zombie day. Its supposed to be in the 90's today so that will make it worse. Aint life grand!
I wonder if intervention will make this go away? I can't make it to L.A., I would be in a wreck long before I made 1000 mile drive.
If I could write a book about narcolepsy, I think that would be my title, "Lost nights=Lost days....Life of a Narcoleptic". Another night for me up at 3 am, sat in the ole recliner, dozed off for about a half hour, woke up to HH and SP. Fun, Fun, Fun......so Fun, I do it every night. I wish there were a magic potion that would allow me 8 hours sleep with no side affects.
Well, Gem, it sounds like we have the aging Narcoleptic Syndrome!
Studio security finds line of cars blocking entrance, with drivers asleep at the wheel. Film at 11.
Sorry GEM, I wish I could be there for ya.
I have been driving Pastor crazy lately... go to sleep at 2, wake up at 7; and he has to get up to let me out of the bunk. Now I am drinking up the first pot of coffee all by myself.
Have bought stock in Juan Valdez AND the donkey. I wonder how long I can manage on 5 hours' sleep?
If I say anything really wingnutty, that's why.
I think the tension in my head is going to blow an O ring, my husband is getting weaker and the pain shows on him all the time. His sons and grandson came to Arizona to visit (which was a huge struggle... loooong story) and which I am out of my mind delighted with, that they made it... but I think it was because
they realized we might meet next under very "grave" circumstances.
They are not happy with the older generation relatives (living here) who dont tell them anything, and I could not ring them up and say "get here while you can still talk to your father."
Finally at the end of July, one of them had more than a polite phone conversation, they all talked and then bolted across 2 states (driving) in 114 with a two year old, to see Pastor.
Where to stay and how to get us there to see them, called for a long ride (*remember over 114*) and our truck w/o a/c, and I cant drive, I was barely conscious, and Pastor is barely able to move his feet, and after very early morning all of the above goes downhill.
But the sons were glorious, and the baby just turned two and is HEAVENLY! He is such a wonderful boy, a pleasure round the clock (astonishing, smart, thoughtful 2 year old)
and I could not have wished for it in a thousand years. I am so grateful all those impossible problems just fell away, and the boys went to monumentally kind effort. They are ssoooo smart, the oldest has like 3 PhD's and 4 master's degrees. The youngest is a flat-out genius in computers, and actually makes his oldest brother look a little "simple" L0L
We all go through the same thing... My Dr. has me on Nortriptoline, this works with our neuro. transmitters, it worhs great for me with no side effects. I also take Sinemit for RLS. Hope this helps.. We all know of lost days and nights. I don't know what real sleep feels like.... Chas
Thanks CZ, I know better, but since I found this site 4 or 5 years ago, I just have to vent once in a while. When I say something here, I know that most who read these pages actually understand what I am saying.
I just found your website this week. I love it!! It is so unreal for me to read see that so many people understand because they have been through it also. It seems like know matter how hard I try people just don't understand how I can be happy and full of energy when I leave work but fall asleep driving within minutes. I just wanted you to know that I appreciate everything you have available on your site.Thank You!!
Welcome to our family. This is the best site for those of us with narcolepsy/cataplexy. Most of us have been here for years, there is a wealth of information and sharing of personal stories. You will be able to count on anyone of us for support, even if you are having a really bad day and just want to vent. We totally understand.
Thank you very much, Victoria, and welcome. I apologize for the slow response. I had traveled to see my sisters twin grandboys turn 3. By the way, when I say traveled.. I mean my wonderful sister and brother in law drive 3 hours to pick me up and when it's time for me to come home.. drive all the way again. I'm very blessed to have them.
Thanks again, Victoria. I hope you find the support you need here.
scientists are looking at new ways to treat rheumatoid arthritis. They are experimenting with new drugs, genetic therapies, and biologic agents that selectively block certain immune system activities associated with inflammation. In recent years, several biologic agents have been approved. These include etanercept (Enbrel) and infliximab (Remicade), which block a cytokine, or chemical messenger, called tumor necrosis factor (TNF); anakinra (Kineret), which blocks the cytokine interleukin-1 (IL-1); and abatacept (Orencia), which interferes with function of some cells such as T-lymphocytes. These cells are important in rheumatoid arthritis. Followup studies of biologics have shown that they not only relieve signs and symptoms of rheumatoid arthritis, but also block the joint destruction it causes. Studies for additional new drugs targeting other cytokines and inflammation pathways continue.
Cytokines are hormone like proteins that act as communicators to initiate disease fightig responses.