I have narcolepsy

Difficult to prove unless you have said you are leaving the job because you have narcolepsy .... And that will never happen because you'd go straight to report, you'll get fired when you pass away because otherwise you and give you license will be the perfect occasion .....

And to focus on the subject see what things make you be discriminated against or hide with your neurologist and drugs or worse deny your disease and treatment leave ....

The Web is full of videos with people falling asleep on the plate of food in the middle of an interesting conversation, everything is exaggerated to the point of ridiculousness. Well, the theme given to the joke? It never happened to me nor to the other narcoleptic I know.

Not denied anyone laugh but should see that this is NOT narcolepsy

Throughout my life I told a few times, almost 20 years ago there was no information available to all and was very complicated to explain, and tedious, and pointless to look at me like a freak.

There is serious research, much study time, countries and laboratories seeking solutions to this autoimmune orexin-deficient and neuroscience professionals doomed to treatment of Narcolepsy.

It would be appropriate to note that things are NOT narcolepsy.

Laziness: One of the deadly sins, which no doubt pierced the minds of all the propaganda of the holy churches (with apologies to God), even atheists, who believe that we are lazy if you count that a nap of 10 'twice a day keeps us well.

"Hangs": that is to be distracted from their work, you know that there are surgeons with narcolepsy and good! Therefore the use of the term that fits anyone, is an excuse that may discriminate when a job.

Psychiatric disorders that manifest during sleep, one has heard the most bizarre dreams of others, but suffice to say that we have nightmares almost constantly and waking paralysis by default in the REM (sleep paralysis), so that this also shoot will know how scary the listener will be is it not dangerous?

The difference between daytime sleepiness experienced by the patient with narcolepsy and any subject is detectable many by a study that marks the same cycle. But if we look around at the cinema or on a bus, there are people sleeping everywhere and do not have narcolepsy, sleep does that also must be "bad"?

I never thought of will to bring together people with this disease, build a blog and forum out to see me in front of individuals who are almost forced by society to shut up .... good way to make any claim of the medium.

As I said in another post, do not tell your work ... you get fired. Fortunately I contacted people from other countries that weathered this difficulty and can speak openly, without it being an impediment so remarkable.

But there is something, and it is the courage to go through on the moral judgment that could be submitted, while remaining ghosts hiding the name of something that we must spread. A disease that can cause significant distress and who suffers no quality of life improve with treatment, staying in the popular discourse: we must take heart!

Yes, we must have, but not cured with courage, because until now is incurable and irreversible.

My love to all of you s

Sleeping Beauty

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Last night in Argentina, on a channel that might not remember, a woman who also want to forget (or report?) Said solving sleep problems.

Yes, just like that, she can let go of those entities not let you sleep and said to call her and she realizes the "work", I'm calling to stop saying it is not legal.

This suggests several things.

I see on Facebook, forums and other media people who understand, inexplicable things happen, but HAVE explanation. But not yet found the right professional and perhaps a doctor commented on it, like me years ago, and looked at him ...??? ... And then tell a tranquilizer!

Beliefs aside, every man for himself, we are talking about a disease and if not show the whole world, with diagnosis, neurologists with data from sleep specialists, we will be branded as rare, complicated, and never have possessed the respect we deserve or give assistance to the neurosciences

Do not fall into the hands of the visionaries, they will charge the consultation, you'll be suggestible and once they did their lean business, you will still experience the same.

It seems attractive and fatal nightmares, sleep paralysis, hypnagogic hallucinations? Not if not treated properly and we f omentado ignorance. (It's great as literature, realtos, novels, medieval studies, anthropology of sleep, ancient cultures, etc)

If the pages look serious, Spain, Italy, France, Canada, USA and others (including this blog) have the necessary information.

I did not think back to this issue, but come on!! If they fight us, continue employment discrimination, misunderstanding of the environment and we will be giving a taste of being on one side as good minority.

Many people going around it and unknowingly suffering!

Gelineau syndrome

It is characterized by the presence of hits of daytime sleepiness.

There may be cataplejías (Extreme muscle paralysis or weakness in part or whole body),

Sleep paralysis is often accompanied by,

Hypnagogic hallucinations (visions in sleep-wake transition) or hypnopompic (sleep-wake transition)

These symptoms have all or part, makes the Narcolepsy.

Greetings, good dreams and ignorance derrumbemos

Sleeping Beauty

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The forum is talking a lot about drugs and their price, work and silence

Let's break things down and start work

As a joke I said above: do not tell ... you get fired ....

Do not take the foot of the letter but there are cases that we have a neurological disease is a good excuse to suggest that we are not with the proper performance.

That is, if you do not have anything going to happen (not I ever had labor problems, only that I held my sleep or I took a nap for 10 minutes in the bathroom) but if they say, is / are the target for that we have no concentration and the like ... and this time I said ...

I know doctors who have, singers, athletes, writers, journalists and would be surprised how many more ... (the professions are a detail that serves to make you fool)

What we have is the ability to defend ourselves and make ourselves heard and that's another topic.

Medications, they are very expensive. The account between dollars and euros is like a bestiality. And not everything is about money, it's see how you feel each medication. I thought we were slaves to the laboratory and modafinil but some customers are lost because many say they do not take it for severe headaches and side effects to the passing hours, comes late and some feel the sharp drop and that depends on how your doctor tells

We must rethink the talk with the neurologist, that this is a specialist in sleep better if it is in Narcolepsy and your experience makes you understand the side effects and do not leave us with a recipe in hand and little explanation. Insist, ask to feel that they have sufficient clarity.

Have at hand a prescription written by him / her in saying that we suffer narcolepsy, and for submission to a consultation for another reason. We need to be identified, as in epilepsy so that in case of need to know that there are medications that can not consume

The other point is the silence, that which makes it between rare diseases when diagnosed below, the responsibility is todos.De some doctors for not knowing evaluate how well do we track and we better explain to people what it is this is about.

Back to sources and categoricemos pathology.

Gelineau syndrome

It is characterized by the presence of hits of daytime sleepiness.

There may be cataplejías (extreme muscle paralysis or weakness in part or whole body),

Sleep paralysis is often accompanied by,

Hypnagogic hallucinations (visions in sleep-wake transition) or hypnopompic (sleep-wake transition)

These symptoms have all or part, makes narcolepsy.

Difundilo you until you become the nightmare of another, we've been through too many nightmares, dangers and bad times of ignorance of others.

Greetings to all and good dreams

Sleeping Beauty

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I found a very delicate phrase is "incidental finding" meaning that he was not looking for anything, much worse than that, maybe a doctor reluctantly agreed to enter a study because the patient reported a list of complaints.

So are some diseases and sometimes later.

Do not panic about that narcolepsy, the disease itself do not think anyone has died, and if anyone know tell me I ask.

Let's look at important points, he spoke at the beginning of diagnosis and hard to get but once you're there with your results will be very easy to get filled with pills and very little advice and / or warnings.

None of you has an ID collar or bracelet to alert in case of accident or emergency to be admitted that there are medications that can be almost fatal. And is not the same cataplexy that fainting ... A neurologist and a dermatologist a few years ago arguing in front of me.

If not give me Benadryl, one said that allergy and possible glottis edema was killing me, the other that I would enter a state of torpor and paralysis that would leave me out of play a week.

The fear did take ¼ of the dose for two days, but warned me never use something like diazepam as hypersomnia combined with paralysis would be complicated. This drug makes it difficult to be myorelaxant movement and momentum of "wanting out" of trance almost impossible, so as to pretend a deep breath. By this I mean that if the query is short, just have a prescription, lab happy and few instructions for your daily life and deal with everything.

Exigile to your doctor to explain, you have to go with the questions listed in a list. They are required to answer and if not, please, change doctors!

Many of you keep quiet at work suffering from narcolepsy and does well, they're going to fire.

The school is different, parents and teachers should pay real attention to a student if this is too tired and not performing well

And to drive?

Here is a complicated issue that may be the tip of the iceberg famous have never seen ... and can help awaken dormant authorities.

If you have narcolepsy, and you conduct a car is your decision, you should not do ...

The Blog of Antoni, who started writing long before me on the subject, I found this .....

"I commented, the general driving rules, RD 1598/2004 of July 2, Annex IV" mental and behavioral disorders "Exploration 10.6, says that people with narcolepsy can not drive any motor vehicle. So if anything happens, the insurance is not responsible for data hiding ....

Charter of Pedestrian Rights. Adopted by the European Parliament in October 1988. "

In Spain you declare that you have is your responsibility if you accidentas but .... what if you kill someone else?

How is legislation in Argentina and Latin America? I do not know ...

You thought that perhaps in Argentina there are many long distance drivers who have it and then desbarrancan?

Who fixed it?

And airline pilots?

Once and for all who have polysomnographs available to a neurologist specializing in narcolepsy in a public hospital and to obtain a driving license ... well, you decide.

Do not say later that they did not know that there is much of accidents that result from this.

Greetings to all, encouragement and good dreams

Sleeping Beauty

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In this post I will not give the answer to your questions, I will ask them.

The debate is open. Is general practice and public health are more utopian?

As narcoleptic try to find all possible resources for better care and have available to us the answers that would give us the health authorities involved. General practitioners who know the Narcolepsy and can join together the specialist

We know that people are undiagnosed. Those who had that luck was in a private school, paying for the consultation or Welfare had in his book a suitable place for it.

What if you do not have health coverage? Private practice to a specialist should be around the $ 300, a polysomnography more than $ 2,000 and lack the Multiple Sleep Latency Test.

Once diagnosed, Modafinil is usually the drug of choice and we know that the price is $ 100 times the 20 tablets and is indicated in 1 to 2 days

(Maximum) and not in the PMO.

This is my wont, how to arrive at the diagnosis and treatment without Social Work?

How do you access the medication?

Narcoleptic comments expressed in this Blog on prepaid and social work

"... In the subsidiary of BS AS, medical audit because I rejected the request that study argued that the expert in sleep disorders had ordered did not serve to detect the narcolpesia. Incredible. After they realized the enormity posed, but I passed the $ 700 it cost, decidiern be "kind and generous" and gave me ... $ 150. A joke. So I went to smoke and talk to the manager who was surprised because he thought I should be happy because at least I had known something After an hour of discussion, the conclusion was that we were "guinea pigs" that science progressed faster than they could support social projects that were in limbo, in an area of "medical vacuum" where we can do little for being so "unique and different." I, very angry, I said did not have the guilt of being a medical rarity, and above all the trauma I was suffering from the impact of novelty, they created more stress to me treating me like a case in a million, without rights, fully discriminated. The reality, and the manager told me, you do not want to sit predecent, because if I gave it to me as a case was registered, and they could not deny anyone. The solution? Through the figure of the "exception" I threw some more sleeves for me to stay happy and fuck more. Most unfortunate of all was the manager's phrase "you imagine what would happen if you had a government social work, and I had to deal with benefits and public services" .... "

"..... These places need to know to assist us. He also asked whether in my case I take modafinil I can have more discount if I go to a hospital now buy all my neurologist particular because of the prepaid is not having my family treat me not accept because it is a preexisting condition but had never found . They think it is genetic and not just cover it. To you it happened to you? in another post you said you took a private hospital, is the same? .... "

".... What am I thinking? In each of us, from his corner of the world, can bring something, first thoughts, then actions to achieve, for example, that the Organization of the United Nations through the Pan American Health Organization, turn a recommendation to ministries of health in Latin America to begin to include narcolepsy and other sleep disorders in public health programs, a dream? maybe .... "

"First say no .... I suffer from narcolepsy, but I have a student who does. I found this blog through Sleeping Beauty and the Sea which left a comment on ours. Actually, we do not suffer this disease as must occur with other diseases considered 'rare' by its rate of incidence, it is forgotten in the public, and therefore of political speeches and other efforts .... "

And I close here, I do not want to be depressed, on the contrary take heart to fight for their rights and those living in silence for suffering discrimination at work or not being treated by the absence of the Argentine State and the Ministry of Health is not everyone equally. And I thought that discrimination was a matter of ignorance ......

A CULT PEOPLE CAN NEVER BE ENSLAVED. Manuel Belgrano

Greetings to all and

Good dreams

Sleeping Beauty

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I'll get to match it, I have enough with which I have told my colleagues in the world, and mine

Some of us, especially those who suffer from sleep paralysis have a "troubled" REM intrusion, hallucinations or adding to describe the French as "idees of rêves" (ou des "flashs" of pensées oniriques).

Because of life impregnated with this cocktail, not easy to tell, indeed, often do not. We part of a dream and leave it there. Some carry them in a notebook, I often escape me within minutes of awakening.

In Laura's Blog http://www.paralisisaldormir.blogspot.com/ can read a description of typical narcoleptic dreamers.

Sman also makes a good summary

http://www.minarcolepsia.com/tag/pesadillas/

Again citing the French, the sentence of his association is "Sleeping too much can be a disease," Let's be clear that talk of "sleepy" but Narcolepsy (it's not following clarification to explain that we have a neurological disease, no psychiatric )

Sometimes the dream activity reaches the level of desperation inexplicable, as the afternoon nap that climbed the steps of a church in which he lived. I opened the lock, closed it and I rushed into the typical Gothic building present in the images that were stacked in my memories vigilic. I spent much time there, I went online and from my chair, arms stretched, longer than the real ones, bringing the papers he needed to do some work, they had to do had he been awake.

But something gave me a signal: I was thinking about the dream and remembering the last time in the emerging to the vigil in total paralysis and tried to pick up the phone for help when I noticed that the words would not come out, it was normal (in paralysis dream can not speak) and gave up halfway, went back to bed from which I had never lifted.

A few days ago he had been fascinated by an excellent account of Mario Bellatin: "Will there who consider the dream as the most perfect act of the body?"

Sometimes the dreams we disabled for hours to pick up the pace of the vigil, we halfway there, as in a limbo in which we miss you lived in that other world, misfits to "real" with a load of suffering. One foot in each world, if there are two ... or only one for us?

Sleep architecture is altered in us and therefore the REM plays tricks with which we are getting used to stop and feel this as a new condition and accept it and well ....

Have good dreams

Sleeping Beauty

-------------------------------

Narcolepsy is a neurological disease diagnosed below. Not part of the PMO drugs we need. We do not have any benefit or assistance from the Ministry of Health. However, in Europe there are statistics on the number of car accidents that occur because of this. This point is perhaps unfortunate that achieves the attention of the authorities. Everyone is responsible for driving a vehicle or not, too bad controls are not exercised but of course, would then start talking about Narcolepsy.

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Neuroscience advance, measuring equipment and biomedical engineering are refined. Is this enough to make a diagnosis? How do you get the right specialist? I still come across doctors who are surprised to hear the name of this disease ... yes, please believe me!

The gaze of the teacher and the family feels a concern for the student who seems to "not yield" to the rhythm of others, is the first step.

When I was little warning teachers, for example, that a desk was changed because it did not read the letters from the board. The indication to consult an ophthalmologist to resolve the issue to solve an emerging problem of myopia.

Over the years, some schools, the level of demand meant that many children were observed in terms of intellectual capacity. We assessed whether the lack of performance, based on the most, was a student problem of lack of "interest", etc.., And passed through postponements without seeing first what was happening to this student.

There is a case that has impacted me deeply because the student who begins to experience symptoms of narcolepsy, is accompanied by teachers who learned about this disease and were developing a plan, unlike the rest, to optimize performance, relieve the discomfort and improve quality of life within the Institute.

An example of absolute dedication to the welfare teacher student.

It is the institute is the Clerk Tárraga IES Manuel San Javier in Murcia (Spain).

Germain, the teacher, opened a blog called Narcolepsy in high school.

http://narcolepsia-instituto.blogspot.com/

How I would have liked to have a teacher like him! I have saved hard time trying to "hide" what was wrong.

Never too late, i nvito parents, teachers and doctors who visit. You will find the trip they made ​​to adapt their sleep and naps, giving due place to develop their activities. Properly reported and study the different possibilities of inclusion

We know it is a disease diagnosed below, but this example is telling us that it is not impossible, they developed the action, were reported and are making an experience that can mimic

Do not forget that Narcolepsy is often diagnosed in adolescence, but in most cases in adulthood. I meet colleagues who have had symptoms since childhood .... but have hesitated to express time, perhaps the fear of being considered rare ....

Congratulations to the group of teachers! Thanks for making it public Germain and inspire others to follow your example. And of course, greetings to the brave student who can encourage others to bring the best Narcolepsy.

Sleep well

Sleeping Beauty

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In a previous post I wrote that we were ghosts for the Ministry of Health or Social Work, naively expected to have contact with any body, but the silence is ticking. I read all the leaflets of the ER Rare Diseases and the common theme is the lack of support and as in my case and that of our group, Geiser use to have an orientation.

Lack of coverage in most or all drugs like Modafinil are for life, that the Social Work referral to medical neurologists we sleep specialists (although not on the card could be made by reimbursement), which provides help to those can not pay the polysomnography and the Multiple Sleep Latency Test. No way to promote research through a program or scholarship ...

Our disease is rare in the worst sense, is rarely socially, not according to the model is "imposed" the individual from a consumer society merciless. People do not feel comfortable with our story in which we state have sleep several times a day, not to mention that there are those who fall to the floor for a few minutes and we have sleep paralysis, is a terrible night that gives us a vigil worse.

Yesterday I watched my companions as we chatted, she, the lovely girl from Colombia, is a biomedical engineer and is doing a master here. It is not unusual to be an engineer but, if you think that she suffered from a very young girl of hypersomnia and received at age 24 ...... more of a "healthy" would have done. How will I am compelled to give an example of how we think, study, work it's time we stop justifying to others.

Night falls, and feel an incomparable mindfulness! said a colleague from Mexico after a test result was something like a "genius asleep ..."

And we all do the same, others still think that you have nothing or only a vague, a night owl who wants to wake up at 11 am and leaves her partner "hanging / a" on Sunday that there to lunch at 12 at home of his father, uncle, friend, grandfather .......

These are the reasons, the most visible, which many people prefer to some symptoms that nothing happens and is normal, it is stressed that his physician gave him a tranquilizer, which must be a "low" a depression, which will read a self help book or splashed with holy water. Family pressure is strong, so it is that we should be looking for support in ourselves, the only ones who really know what it feels like this and expect that in future there are parents, teachers and parents better trained for this. To think that I feel great for doing this blog.

Not for me but, at least it is for those who come ..... worth the effort.

A greeting to all and invite you to enter forum

Sleeping Beauty

PD: no solo menciono a Colombia, también a Chile, México y España que siguen sumándose y nos acompañamos a distancia!

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Ya me conocen, soy la Bella Durmiente y quise contar la Verdadera Historia. En este tiempo se fueron sumando otras Bellas y Bellos Durmientes que se sintieron identificados con la realidad que atravesó mi vida con esta enfermedad. Hay mucha gente que no está diagnosticada, el espíritu que alienta este trabajo es hacer llegar toda la información posible y conocer nuestros derechos.

Today was a special day on September 29, we gather, provide and we open the Narcolepsy Forum, the first devoted exclusively to this disease.

Companions of the group: not named and reserve their identity until they decide otherwise, I appreciate the openness, sensitivity and show solidarity, not only care about what happens in their lives, as well as I want to reach out to others. Thank you all for joining!

I also thank Any Rodriguez, president of Geyser that is taking the information in other ways and opened an unexpected view to working together and Dr. Maria Prats that contacted us. Matias Provides for the design of brochures and Miguel for technical support.

Dr. Claudio Podesta, a neurologist specializing in Narcolepsy answering my concerns from the scientific field. It goes back a note of it to be reread and clear doubts.

A hug to all and best dreams!

Sleeping Beauty

http://tengonarcolepsia.com.ar/articulos-y-publicaciones/

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En mi recorrido por algunos Blogs encontré que, sorprendentemente, la parálisis del sueño no es considerada por quienes la padecen como parte de una afección.

Por lo tanto va otro repaso y para los nuevos lectores puede servir de ayuda.

El síndrome de Gelineau o Narcolepsia se caracteriza por:

Excesiva somnolencia diurna (diferenciada de otras hipersomnias)

Cataplejía

Parálisis del sueño

Alucinaciones hipnagógicas e hipnopómpicas

Las alucinaciones que se producen entre vigilia/sueño y sueño/vigilia son las hipnagógicas e hipnopómpicas.

Hay una tendencia a mezclarla con fenómenos “paranormales”, “posesión diabólica” y hasta “abducciones extraterrestres”……

Cada vez que entramos en el sueño (no voy a ahondar sobre las etapas del mismo) las personas que padecemos esto, podemos comenzar a “soñar” ni bien cerramos los ojos. Vamos dejando de a poco el lugar conciente y entramos en un espacio que puede parecer fantasmal. Si en ese momento sobreviene la parálisis, estamos como en dos planos a la vez, soñando y escuchando lo que sucede a nuestro alrededor. No podemos articular palabra y si acaso creemos que estamos moviendo alguna parte del cuerpo en el intento por despertar…pequeña desilusión al ver que no hicimos nada de eso, seguimos acostados en la misma posición.

No nos movimos, no encendimos la lámpara, no llamamos a nadie (al menos no salió la voz de nuestra garganta). Puede que sintamos hasta alguna contracción en el rostro, producto de ese desesperado intento por salir. Hay sonidos, como chirridos, pasos o voces, zumbidos que parecen generados por algo mecánico (ejemplo: una máquina aserradora)

Podemos sentir una presencia “invisible” y que se hunde nuestra cama como si alguien se sentase a nuestro lado. Hay una leve dificultad para respirar por la parálisis de los músculos voluntarios.

Si alguien nos llama por nuestro nombre o simplemente nos toca podremos salir con mayor facilidad de este trance.

Estamos invadidos por el terror, eso ya lo saben todos, y con el tiempo uno entiende que no hay peligro pero nadie puede sentirse cómodo teniendo el cuerpo totalmente paralizado y conciente de ello.

Las alucinaciones se diferencian y con mucho de la que se presentan en los casos de psicosis ya esto se llega por medio de los estudios que realizan los neurólogos especializados en el tema, una evaluación previa y la posterior conclusión e inicio del tratamiento.

De cuántas parálisis tengas en la noche, en la semana o en el mes depende la calidad del sueño.

¿Cómo no entender el excesivo sueño diurno cuando así fué la noche?

El sueño está fragmentado con varios despertares involuntarios, nos demos cuenta o no, por lo tanto y luego de lo relatado uno se despierta con el deseo de volver a dormir para recuperarse de todo!!!!!

Pero no es así, debemos levantarnos y emprender nuestras actividades cotidianas.

Los antidepresivos (como la inipramina) van a aliviar la cataplejía y la parálisis, el modafinilo mantendrá nuestra vigilia en un grado relativamente aceptable (no es una panacea!) y es igualmente recomendable hacer unas pequeñas siestas de 15′, aunque tengas que irte de tu clase o tomarte el tiempo de almuerzo en el trabajo.

Es importante que quede claro para los afectados y sobre todo para los familiares, amigos, compañeros de estudios o de trabajo, pareja, y otras personas que nos rodean en la vida cotidiana que, lo anteriormente descripto no presupone una disminución de la capacidad intelectual del individuo. Los ritmos son diferentes, tal vez.

Se necesita otro tiempo, si es que pudiéramos explicar el concepto de tiempo, ya que a veces éste se diluye sin que tengamos conciencia de cómo pasó. Tal vez como el concepto de “la durée” en Bergson…pero ese ya es otro tema.

Los saludo y que duerman lo mejor posible…

Sleeping Beauty

Quiero agradecer al Lic. Carlos María Jordan, Coordinador de la Unidad para personas con Discapacidad y Grupos Vulnerables del Ministerio de Trabajo.

Fui recibida tanto por él como por su secretaria con dedicación y amabilidad. Hablamos de esta enfermedad y pude saber sobre las distintas tareas que ellos llevan adelante para la inserción laboral. ¡Muchas Gracias!

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