Those who are diagnosed with and those without: a greeting in the international day of work. What about work? ¿Temita muted, right? Already received some emails from people who have lost their job over this. And the secret is that we are few and not "press" ... would leave some anti-discrimination body to defend ourselves? I doubt, I hope someone comes close to prove me wrong and I will accept delighted! The studies are very expensive and there is no public places to make them, I believe. In other countries it is the same. We know it can diagnose and some do it alone becoming experts in the brain to force as if this is not a disease, just a little ...... rarity worthy of consideration by a Ministry of Health?
-----------
Of all the symptoms I have is the most sleep paralysis and stay there atrapadita like Sleeping Beauty, I think the prince is the Inipramina not allowed to happen, at least for several years. Do not be afraid to medicines, which are medicating know how difficult that is. Breathe more polluted air waste in a pill that can relieve a lot. Yes "guinea pigs" not permitted!!!
But: And cataplexy? Little did I know, my neurologist gave me several questions and try to list the times "rare" and only see little things like ... Let's see: I can post technical information but, as the friend Letty de Mexico, the better our experiences .
First the data ...
Cataplexy: the loss of loss of muscle tone and / or muscle strength, without loss of consciousness, which comes after an emotional stimulus either ....... can be laughter, shock, surprise, disgust or anger. This loss of muscle tone leads the person to fall to the ground (or at least loosen their legs or hands). The "crisis" is more or less intense, and usually lasts from a few seconds to 1-2 minutes. It is one of the most common symptoms of the narcoleptic syndrome but does not occur in all cases.
Now, I hope to discuss their experiences, pioneer Letty could you expand on what is yours? Someone new? They are more than welcome includes a virtual café with some chocolates, this space is for this, have, express, and then talk about solutions or relief.
He clarified that this week it took my post, although I do not believe anyone .... I was so sleepy!
I greet with affection and dream of nice things
Sleeping Beauty
May 2nd 2009 at 6:48
Hello Bella D.: I have cataplexy, I drop things and says Letty and give me an antidepressant tamb night. Sometimes paralysis. Very B page. It's all very expensive, I ordered a lot of money polysomnography, I can not do it. In hospital I find, you know if someone has aids? I live in Tucuman
Thank you! Slds
Wake
2nd May 2009 at 14:55
Good evening here in Roquetas, Almeria (Spain). Sleeping Beauty, suffer narcolepsy, hypnagogic hallucinations, cataplexy syndrome Obstructive Sleep Apnea, and so I would not miss anything, restless leg syndrome, and I suppose like all anxiety, high anxiety, that evil happens!.
Perhaps I have gone beyond what I have said, and talk of cataplexy, the truth to me in particular I never dropped anything, just me by myself I fell, as he does not want the thing, but hey that happens, many strokes, the doctor, I did many tests and on my blog more or less want to clarify, I say more or less because it is difficult to write, but I think when you write from the heart means. I invite you to visit my blog and you will realize that apart from what I have said here even more "little things". A big hug for you all and thanks for your Sleeping Beauty work know that I am preparing my notes for rewriting. Thank you all.
May 3rd 2009 at 13:48
Thanks John for telling thing, hopefully it will add Letty and another that goes around. Accepted and clear suggestion to visit your blog, to the right of this page is a link that leads directly to him.
A honey from Argentina
Sleeping Beauty
8th May 2009 at 9:41
Hello Bella curmiente, Estelle, John ... a greeting from Madrid (Spain), with a bit of sleep, I must say (it's nap time!) Well then let's talk a little bit of cataplexy! I tell you what I feel, not like John, I came to like but if I lose my tone, my knees and I feel it in your face, I have to lean to keep his balance, but more or less I have controlled ... yes, the problem is when I have a very good joke when I have a glass in hand!
Do you sound? Just diagnosticarme (enero09), although I sufriendolo for over 10 years ... but of course, you know how it goes ... I, like our beloved Sleeping Beauty, spreading the disease, help within my means through the exchange of information , so I was delighted to meet you over here. Tell them I just enter the Spanish Association of Narcolepsy and I volunteered to help out, so all I can, here I am. We will update the web, but it goes slowly, you know ... our sleeping rhythm ... from there to welcome and support all possible hands. a big hug. Mar Alvarez (NEA Team Volunteers. http://www.narcolepsia.org )
8th May 2009 at 9:41
Perdonaaaaaaaaaaaaaa, have called Bella curmiente!! SLEEPING!
8th May 2009 at 16:02
Hey Ocean! Welcome, can add up. I have entered several times a page of the Spanish Association of Narcolepsy. I was asking my neurologist and cataplexy has many levels. Sometimes not recognized, just as you say loosen muscles without sudden drops. I hope we can share more experiences. I have medicated already?
Congratulations for your volunteer work. That all need people like yourself come together and make it possible. I'll put the link so you can gather more volunteers.
Greetings to Madrid, a hug for you and help stop ...
Stay in touch and good dreams
Sleeping Beauty
15th May 2009 at 17:35
Hello! I am new to this .. I have no diagnosis yet, I have done two tests, polysomnography and Multiple Sleep Latency Test and I'm waiting for the results, but from what I read of the disease and unfortunately I think that is the result ... I have drowsiness from I was going to school (now I have 20 years) to the point where I had to leave school because he could not continue. What of hallucinations does not happen very often but it happens to me ... sleep paralysis of the same thing happened to me once, but tampcoo usual and the cataplejias is what scares me the most .... still have not had any, well, occasionally I have bent knees but I've come to falling to the ground. The neurologist told me that you start with just a few symptoms and many others. I'm pretty scared the truth, I think I will not be able to carry forward this situation ... Besides all this I have other symptoms but not if they have any relationship with narcolepsy, I give small spasms and muscle contractions, and also feel tingling throughout the body, as if I recorrieran percent of ants all over.
I forgot, I have the fatal sleep, sleep might please me about two hours and sleepless nights, then go back to sleep, I'm going to reveal, uff fatal.
A kiss and bitter for not giving you much hope.
15th May 2009 at 17:56
Hi Sarah, do not feel bitter that someone with your story. In that we are all, of listening, reading us. Quiet, first of all. I, like Laura have had this from very young and diagnosed at 30-odd. It's lucky you're in another era, best known as the subject, and you could do the studies. Do not panic, wait for the result and try to erase the anguish, it's nice to talk to anyone willing to give you a good listener.
What your sleep at night is also fatal case.
Your sleep at night is "fragmented" making need naps in the day to compensate. I understand what having had to leave school and in my next post I'll talk about that in my life, performance ...
There is a rhythm of activities that you will discover, your own.
I encourage you're not alone, we will not be many but we are meeting to give us a hand.
Welcome and passes through here when you need it!!
A hug
Sleeping Beauty
3rd July 2009 at 18:33
hello! I just wanted to say hello, I came here for IntraMed am obstetric. I learned new things from your enfermedad.Fuerza! Greetings! Bellisima Sleeper. Ingrid from Catamarca.
5th July 2009 at 11:39
Thanks Ingrid that as many professionals do not stop to help us learn!
In pregnancy and childbirth this disease must surely require special support and monitoring of medication.
Thanks for the good wishes.
A love from Buenos Aires
Sleeping Beauty
23rd August 2009 at 16:46
Sleeping Beauty Wave today I discovered your blog thanks to facebook and the truth esque is great, hopefully we get some help with this. I wanted to comment on this post especially since I was diagnosed with narcolepsy last couple of years and was my first symptom of cataplexy, but as I have understood this is very rare to happen. For this I began to happen in the summer that I was going to happen at 3 ° d ESO and when I went to play football or basketball, always in times of increased adrenaline, such as dribbling, I fell to the ground, but without lose consciousness. Gradually it evolved and happened also when I hechaba such a race with my friends (to be competitive, because if it is from running an not happen to me, see?), Or when chasing you on a flight or something like that. Then
also wrapped around with laughter, at first with a joke a little good could not keep my face fell, and the TIME arrives I fall to the ground even one. Once I fell over a table and then to the ground and just if with a screw on a tile abia ke and ke had me stitches.
With these things which we suffer this symptom we must learn to control our feelings because cataplexy is. If you do not pay attention to you will be a gift you will ahacer nothing will happen (but of course, seem ungrateful) instead, if you filled with joy and gives you a catpalejia hit the ground ...
so in many ways worse.
I hope you serve. a Kiss
August 27th 2009 at 20:46
Hello sman, never, I think, I catalejías. At least not those you describe yourself and what happens to other co-narcolepsy. In me is sleep paralysis or as noticeable. It is true that we must learn to deal at a different pace and with some precautions, just read your accident! As you can tell us anytime if you are on treatment, it can help especially those who are not sure what happens.
Thank you very much for your story!
A hug and take good care
BD
August 31st 2009 at 7:44
New wave of Bella, the truth esque if I'm in treatment, but the pills do not much effect, and if you do not learn to control feelings as I said in my other comment, the pills are useless. You're very lucky not to have ever suffered cataplexy with paralysis because I think they're the worst symptoms of narcolepsy. Since both are much more dangerous than drowsiness, which can cope more or less over time.
If you ever need to respond to any comments of cataplexy or something, like you say still not experienced, you can send an email to guille_cr_m@hotmail.com and I will answer gladly.
Kisses
1st September 2009 at 17:55
Hello everyone, my name is Dario me too I have narcolepsy, I'm from Valencia and I have 27 years
I live all the symptoms I've heard or read but you will see lots fell I knew what I had.
It was a great relief to me when the neurologist told me "you pass this and this and this"
! Everything he said was wrong!, Their descriptions were just as I passed me, someone finally understood me, so it was a great relief in my house no one understood me, I knew I was something that had nothing to do with mistado of mind, if not the other was what killed me disappointed.
Always tired and then I went dream began cataplejías, later the strange dreams someone, something, was hiding in my dreams, although sometimes there are nights I try to turn the light to wake me at all but I will not turn into sleep and fourth or fifth time I turn on the light of truth is when I'm doing.
I went to the doctor for the first time and I say that you may have intoaccount when I left paralyzed by the pool, could not keep his head above water.
Well also I have to say that once you know what's going adapting even without knowing it.
For example when I start to dream that has been so real I've learned to divert dreams into positive things instead of a hard time, a good step. In my case I go to the top of the bed, a long dream realities are but five or ten minutes or less. That if during the night it really did not sleep well.
Cataplejías I fell a lot more that controlling feelings affect me unless things were not that it is an insensitive but unfortunately I grew more serious, if I make jokes but otherwise, yes I do things but grace from outside not from river inside. When river from inside or hit a lot with a joke, cataplexy, it's all those having a good time.
The worst performance I have been at work, I goes a long way, and also work for me.
I was prescribed some things but I aturullaba head.
I have stop drinking coffee and see if the doctor puts me treatment.
I read that the treatment is very good to people.
What can I say about it?
Do you sleep better at night?
Do you perform better by the day?
Do you have the head more clear?
How about you take the day with coffee treatment?
Am I smoking snuff?
¿You left smoking and what you noticed enough?
If I can help someone my mail d_rubio_m@hotmail.com
A greeting
Dario
2nd September 2009 at 20:39
Hi Sman, we agree in part. Yes it is easier to cope with sleepiness, in fact if you drive a car there is less risk. The hard part is dealing with working hours and feel the need to sleep even if the 15 'that leave you like new. And if you can not do the feeling is generalized discomfort ranging from headaches to nausea ...
I fully agree that the paralysis is horrible and I left in the night much reparardor sleep time, or speak of dreams and how they are confused with reality in an attempt to get out. So far none of cataplexy, so I put the emphasis here on the blog, which is not only what I feel but the four symptoms of narcolepsy that affect everyone. We are united in this and all doubts resolved depends on all of the treatments and their effectiveness. Thanks for your descriptions, there are many who will read you just feel good and know they share the same.
In responding to comments, I feel great that you respond on the blog to expressing his displeasure with the cataplejías, I will learn to identify them in case you start to have them.
A hug and thanks again!
Sleeping Beauty
2nd September 2009 at 21:00
Hi Dario, I answered according to my experience.
With treatment, I do not sleep better at night, maybe I need to adjust any doses.
-I pay better in the day, but would prefer to start my work at noon, then the result was very good.
-The head is more "clear" if you have less paralysis at night, and medications take effect at this point. It's good that you can still work for you and organize your schedule. As I tell Sman and the other that the subject of managing emotions sounds like it must be very difficult, I say!
-I took Argentina and mate, that famous infusion of these places, a couple of coffees a day and I have not noticed any difference with that.
-I am a smoker, many of us have had coffee and smoked a cigarette to leave behind the stressful time of sleep paralysis and sleep again.
What's wrong with the dream of attempting to light a lamp and do not ... we all do, and we're adapting to what calms us. Very good achievement to divert your dreams to positive, well, I do not get it!
Greetings to you and one for Valencia place I want in the distance, I have a friend in Valencia!!
Sleeping Beauty
PS: Soon to open the forum and we will be more connected, so far as I tell sman, if you want to answer any concerns of those who write, you have the freedom to do so.
September 5th 2009 at 3:52
Darius I read your comment and to me the same thing happened when my neurologist diagnosed me. And the dreams I have many in which they appear as the fears I have some things that I never have occurred but could occur as a teacher yells at me and gives me a cataplexy, or a fight, ..., and good if you have a girlfriend or you had recently come and head scratches amazing though you forget.
As I said in another comment I think, in the cataplejias the secret is to control the feelings and laugh as you say from outside, and when we can not help it, try sitting. No I feel sorry for you but when my friends laugh hard at a joke and I can not enjoy it like them, or when a peer is given fiestecilla some funny circumstances and can not control a cataplexy and you fall down, hitting you (I think there nerves must come down or something because those punches hurt a lot less) and screwing the festive atmosphere there was.
I am a real city, and took Modiodal and tofranil, but over time they leave to effect, at first I activated a pill now more than three. My neurologist suggested me to change to sodium oxybate (Xyrem) who say they do very well but has thousands of side effects and is a little expensive.
a hug to all
12th September 2009 at 16:29
hello the verdd I feel very identified with all the stories I discovered narcolepsy ami to 15years, when empese to like to hear laughter or laugh ... now I join the movement of legs ... do not sleep very little at night and day I have Live suno tired with headache and legs .... and TALK or the days that I d eno power grabs or crewer desperttarme these despeierto when it is not so ... or feeling things that realmete not pass something orrendo or hearing voices. . always complain and I really feel that satan around me do not know what it really feels .. and to read what I feel comporendida of you and I discover that the only by csuerte lsoy
September 13th 2009 at 9:53
Hi Gisela, I'm glad to find others living the same as you. The part in the one you describe on sleep, you have the symptoms of sleep paralysis?
I would like you to tell us if you're in treatment.
Someone will respond to pregnancy and to my knowledge there are no problems with this.
A greeting and encouragement, not always easy to understand that your surroundings, at least for now ...
BD
27th September 2009 at 12:48
hello I yamo yaiza.soy of almuñecar, granada.me like to contact people who have narcolepsy, so I can advise a poco.padezco narcolepsy from 17yrs or so, the dream really llebo well, because I notice when I will give, but sometimes at work nome dou account and keep working but I'm really asleep, and then nome nada.pero agreement that is worse llebo cataplexy, because every time I control me and gives me less in any lado.luego the dream, the dreams I have are so real that sometimes nose if it is true or not and from that I forget all the dreams and sometimes nose if what I'm saying is true, and if I soñao or an that, finally .. took a movida.yo modidoal velaxafina morning or something and the noche.aunqe pill at night is an antidepressant that I ace nothing because I'm someone knew of a igual.si please burn it good neurologist diga.bueno buestra respuesta.gracias.y hope good luck to all
28th September 2009 at 18:48
Yaiza Hello, first of all I should tell you that your neurologist / a is a specialist in sueño.La tomás pill at night would be to relieve the cataplejías ... have to see if the correct dose. I will pass your concern to someone in Spain that will surely come in contact with places where you can attend or at least give you a hand.
A hug and take care!
Sleeping Beauty
September 29th 2009 at 16:32
Yaiza Greetings, I am narcolepsico, real city, I have 17 years, and makes 3 I'm in treatment, recently made a website with aim to know something more of narcolepsy, and I think you would solve many doubts, if you want I can answer any specific questions. Find me on facebook in the group of narcolepsy, my name is william r.
2nd October 2009 at 18:37
Hi Sman, I sent you mail but your e-mail to me bounces. You know, you're invited to the forum.
The name, understood, and my apologies.
A hug
BD
2nd October 2009 at 23:32
My name is Ariel, I live in the Republic of Quilmes (Argentina) and a little over a month I was diagnosed with narcolepsy ... Cuéntoles that I have 26 years and I have been for over five years to treat me with psychiatrists and psychologists. The story is not very different from what you have: I started to treat depression and I were walking around with thousands of drugs, analysis and studies, until finally one day come to a neurologist who suggested I make a study the sueño.Me did the study in the clinic of Dr. Podesta and the result was that I have narcolepsy ... oh, and besides I have apneas and hypopneas (70 per hour), so, as you will realize, desacanso not give a fuck, no nothing. this year I had to leave school because I could not keep up with study, I can barely get out of bed as it is all so new I have thousands of questions that probably will ask later. Today I wanted to ask the following: to treat narcolepsy Modafinil gave me, I took it twice, the first few months ago when I had not yet diagnosed with narcolepsy, and within days of taking it I went into a terrible depression and my psychiatrist I suspended him. Now with the diagnosis, another psychiatrist, prescription modafinil me back and start taking days I start to feel more depressed, more tired and sleep more, besides getting headaches, dizziness and tremors. When I tell this to my psychiatrist asked if he might be doing some rebound and he says no, that modafinil can not produce these effects, but I stopped the dose and most symptoms disappear ... and my questions are whether a nervous stimulant Modafinil as is can cause depression and more sleepy and tired and that is another way to treat narcolepsy except with modafinil. from already thank you very much, I apologize for the extent of my letter, it happens that I'm trying to kill the anxiety because I see my doctor until within fifteen days and the symptoms remain the same. Thanks again and I wanted to suggest (I have understood that many of you come together) to do a slumber party or something, to meet and share experiences.
finally: imagine how much worse this could have been if we lived on Elm Street ¿?
October 3rd 2009 at 6:20
Hi Ariel,
first of all welcome, too early, I take Modafinil and go to work!. I believe I can bring depression, did not give you an antidepressant of the type Inipramina other symptoms of Narcolepsy?
The art of medicating is like the ancient alchemists, each of us needs an "adjustment" in the dose according to what we relantándo to our neurologist.
The psychiatrist who serves you aware of narcolepsy? This is very important because as you've reported, it was often treated as a disease "psychiatric" and it is not .... no better or worse, another treatment!!
Narcolepsy with AS you can feel depressed, lethargic, having horrible nightmares, hallucinations .... but not psi field ... beyond one does psychotherapy.
For now think I've answered something, again, it's morning and I have Narcolepsy .... ....
I invite the forum to be to ask questions out there, you will have many answers
I send you greetings, also Quilmes!
A hug
Sleeping Beauty
PD contactate for meetings.
4th October 2009 at 12:02
many gracias.tienes reason the neurologist that I have not a specialist in narcolepsy, I am aware of change, but it is very difficult contacatar grenade with your neurologist if not through appointments cita.y're given from year to year, here the neurology is very slow, especially issues related to this enfermedad.me like to know if I'm the only one who does not sleep through the noxes? and also I get a hunger and not eat anything, even a grape, I can not stay asleep, and I desepero, I move from one place to another and can not stop going to baño.y normal the next day after this all day tired, because no good night's rest.
muxas good thanks, hope your ok response.
yaiza greetings.
4th October 2009 at 14:48
Hello Yaiza. First of all I invite you to come to the forum, there you register and you can open the topic that interests you!
I tell you that all or nearly all, slept badly that night and to be hungry in real trouble ... like eating as you say even a grape. One point is better sleep at night, take your medicine used at a fixed time, always the same, well relax and sleep .... It will be some co-Spain trying to find a neurologist, just ask your turn to have it.
A love
Sleeping Beauty
9th February 2010 at 20:45
Hello I'm from Quetzaltenango, Guatemala I was diagnosed narcolepsy at 15 now I have 16 is very hard on
do this but I feel very calm and helped to know that I have friends who have
No what I hope all this and move on cuentn me. I have also cataplexy
I fall to the floor when I have an emotion unable to speak or move, I had to stop and lo9s
could not continue pro studios hope to continue now with the medication I could manage a little sleep but sometimes is irresistible, I hope to keep in touch, and I congratulate you sleeping beauty.
Cheers, Tania taniakarrilllo my email is @ hotmail I can help you in whatever.
11th February 2010 at 5:49
Hi Tania, it is fortunate that you have been diagnosed so young, is a great help to have treatment on time. You'll see the retomarás your studies later.
I would love to tell me where you atendés, this can be a great help, this blog is read in America and there are few data points. Do it here or join the forum!
Welcome and thank you very much.
A hug
Sleeping Beauty
11th February 2010 at 20:53
Thanks for the welcome that with you I will feel much better comportandiendo with pers
peoples suffering like me, good as I was saying I'm from Quetzaltenango, Guatemala. For
doctors who are treating me this one in Guatemala's capital, and another doctor has
clinic here in QWuetzaltenango, I have to go to Guatemala about every month, cl
I will not ring almost every month to 2 or 3, for economic question, the doctor who treats me
in Guatemala is without sleep clinic where I did the tests to detect what
I have called Dr. Henry Stocks and the doctor checked me here in Quetzaltenango and I
command to Guatemala is Dr. Ellie De Leon Natareno.
Both are what are medicating me and taking control of medicine, because as sabr
is not an either medicine, Dr. Henry has his clinic in Guatemala, as he is
Latin American president at the hospital without sleep, but that is allowed
as I am now with an improvement talves not as great, but for me if significantl
VAT is only God who has been with me and it is with ustdes sure, I hope to continue in
for communication as well tell me you've been able to raise all this and as
you could take your life while having narcolepsy.
Thanks for seeing me cuidate, lots of hugs and blessings to all who read this
Actually, take care hugs.
Tanya Carrillo.
1st May 2010 at 17:00
Hi, this is the first time I write in a forum. Do not know if I'm going to tell someone you are interested but here I go: good to start my name Lydia and I live in Spain (Catalonia) I have 15 years (in a month 16) and I k more or less a year ago that I started to have cataplexy. My cataplexy is not to say very strong, but enough so you always have to be careful with k what anyone will say or do that can make me laugh, etc. .. I try to do is like someone mentioned earlier try not affect me much, laughing on the outside and not inside. Although sometimes that is not possible: S. At the moment I do not take any pills for cataplexy. Just take modafini for sleep.
No hace mucho que se k tengo narcolepsia y avezes creo k la gente no me comprende >.<.
Si alguien quiere hablar sobre esto si le pasa lo mismo o algo dejo mi mail ^^ lidialince68@hotmail.com
kisses
mayo 1st 2010 at 21:31
Lidia, aquí todos entienden, por vivirlo, en mayor o menor grado. Sería genial hablar con vos, registrate en el Foro, y fijate, hay varios temas, podés abrir uno, y te vamos respondiendo y contando lo nuestro.
De a poco, te irán comprendiendo…
Kisses
Sleeping Beauty
mayo 3rd 2010 at 19:59
Hola a todos, soy tania pues les cuento que hace pocos dias fui al colegio donde estudiaba
para reiniciar mis estudios aca en quetzaltenango y lamentablement para mi soepresa no me
reciebieron m dijeron q no se hacian cargo ni me podian ayudar me senti muy mal pues esto
nunca m habia pasado. Pero aprendi algo de todo esto q con esta enfermedad se debe luchar
con muchas cosas yq esa es una de ellas pues ahora estoy con muchas mas ganas de seguir
adelant, luchar y hacer q esta enfermendad se reconozca aca n xela ya todos los q lean
sto pues los animo a seguir adelant y pnsar que sto algo q nos tnia que pasarnos y que
DIOS NUNCA NOS ABANDONA Y QUE DIOS NOS VA A SANAR PORQUE EL TIENE ALGO MEJOR DE LO QUE TU
Y YO NOS IMAGINAMOS ASI QUE ANIMO y ya saben q cuentan conmigo para lo q sea.
saludos a todos ya ti bella durmient espero puedas contestarm cuidat.
Tania Carrillo
mayo 3rd 2010 at 20:30
Hola Tania, me sorprende lo que te pasa, cuál fué el motivo? La narcolepsia? Pero eso es un asunto de esa escuela en particular? El muy triste que en esta época pase algo así, ya deberían saber que no hay motivo ni argumento posible para que no entres, es discriminación….! En este blog, en el foro, hay mucha gente con estudios universitarios. Los docentes deben estar mejor informados. Si te podemos ayudar, con todo gusto. Si querés, escribí a tengonarcolepsia@hotmail.com y me contás un poquito mejor. Me gustaría saber más detalles de tu escuela. No desanimes, seguí con fé
A hug
Sleeping Beauty
mayo 12th 2010 at 5:16
hola!mi nombre es mireya aranzazu,tengo narcolepsia cataplejica,y me gustaria conocer gente con mi enfermedad soy de leon y no conocco a nadie,asique animaros a conectar conmigo.besos para todos.
agosto 31st 2010 at 10:04
Buenas tardes, si me lo permiten quería comentar mi caso. Tengo un hijo de 2 años, desde lo 6 meses comprobamos que tiene pérdidas de tono muscular. Mi hijo se cae de repente al suelo cuando no descansa bien, se ríe con mucha intensidad, cuando tiene miedo…
Desde entonces le han hecho pruebas de todo tipo, para descartar ataques epilépticos, resonancia, electroencefalograma, pruebas del sueño diurnas y nocturnas. Todas las pruebas han dado negativo y la neuropediatra que le está tratando sospecha que tiene Narcolepsia/Cataplejia. Le ha mandado un tratamiento para empezar en el mes de Septiembre, exactamente Rubifen. En Octubre le van a realizar de nuevo una polisomnografía. La verdad es que no sé qué hacer, si comenzar o no con el tratamiento. Por un lado pienso que no, que debería esperar a los resultados de la polisomnogreafía, pero por otro lado la Neuropediatra me ha confirmado que es Cataplejia por los síntomas y cuanto antes actuemos mejor. Llevo 2 años esperando un diagnóstico, y lo que más quiero en este mundo es que mi hijo reciba un tratamiento para poder hacer una vida lo más normal posible. Mi hijo tiene miedo al andar, apenas juega con los crios, casi siempre está al lado nuestro por miedo a caerse. ¿Puede darse el caso que la Narcolepsia afecte al aprendizaje?, a mi hijo lo veo un poco más tardío a la hora de andar, correr, hablar y entender.
septiembre 1st 2010 at 0:13
Hola Marian, me conmueve tu caso porque ante los niños uno no sabe cómo actuar Hasta ahora se habla de casos desde los 8/10 años, al menos declarados a esa edad. Si la neuropediatra dice que son cataplejías, lo serán. También nos decís que la polisomnografia y los electros diurnos no dieron ningun resultado….
Te respondo lo poco que se, hasta ahora no hay casos de problemas de aprendizaje por falta de capacidad ( y si los hay no es por la narcolepsia en sí misma). deben explicarte bien los efectos del rubifen, hablarlo nuevamente con su pediatra y si entrás al foro, planteá esto nuevamente, hay gente de España y de la Asociación Española de Narcolepsia. Te deseo buena suerte con el diagnóstico, y que tengas ánimo y fuerza para afrontar esto.
Feel free to tell whatever. Greetings from Argentina
Sleeping Beauty
12th June 2011 at 23:42
I'm waiting polismnografico result is the first I have narcolepsy sleep at night and wake up several times, I fall asleep during the day but when I sit down to eat relax yal I have mixed emotions when I get weak muscles in legs and arms my question is there medication for this, my wife and my children are very concerned. I hope to answer through my email.