2009 Aug 16 2009

We narcolepsy and you have to know

Category: Uncategorized - admin @ 18:29

How many are we? Impossible to know, to the extent they approach something tells us we should be about how many, will find the statistics on this page and the links of the same.

They say that dogs suffer doberman, say that cats so easily fall into REM sleep as we said Kurt Cobain was diagnosed that ... and I wonder whether the diagnosis of Joy Division singer, Ian Curtis not have been as wrong as many of us.

I myself was medicated with carbamazepine for an alleged "sleep epilepsy."

The group is forming and I Sleeping Beauty, almost as old as the Disney character I feel good about having the favorable response from you. There were many years of silence .......

At this first meeting, my colleague tells me that condition will not comment too much and that few understand ... and that is multiplied, because it happens to everyone.

We will continue to collect and those who could not this time come in the next game, let's give a hand to those who do not know what is happening and suffer ....

We need to work and are forced to hide the disease (not me) why others may miss two days for a liver attack after a barbecue with chimichurri, but would not be proper that faltemos to have had a terrible night? While this could happen to us as infrequently as a cold, a couple of times a year.

Since I mentioned the price of modafinil and the box only brings 20 tablets costs $ 90 and Social Work 40 to 50% less ... Why? Because not part of the PMO.

Lords of the MINISTRY OF HEALTH, SOCIAL WORK OR PRIVATE UNION, please see if they learn that this is irreversible and that if they estimate that the month has 30 days would be over $ 300 per month, according to each case.

Come to think better ... If it is irreversible and permanent, I'm being a steady source of income for some laboratories?

I would love to talk to them and to participate in the new chemical findings, it would be wise to accept an interesting approach. BETA Laboratory wrote to a few months ago but I got no answer ... my e-mail.

You are invited to participate if they suspect may have symptoms that are explained in the information.

Come on, do not sleep .....!

Sleeping Beauty

PS: I send my thanks to Dr. Claudio Podesta who kindly answered my e-mails.

I interviewed at the Institute Fleni in 1993 and, given the questionnaire prior to polysomnography, to mention each of the symptoms suffered since childhood I thought it was facing a seer! (A friendly joke)

http://www.esleepargentina.com/

Related posts:

2009 Aug February 2009

Narcolepsy: a disease "rare"

Category: Uncategorized - admin @ 20:05

After a break in the back writing as having posted relatively addresses public places answering the questions I receive.

My namesake Sleeping Lord Bello from Mexico appears to be more active, believe it or not, and interested in our subject.

We know that yours is on the dream idiopathic, correct me if not ....

My colleagues and sleep paralysis, we know many things, we have data, scientific details, but neurologists who work selflessly missing ...... great little jump.

Increased communication between us.

I understand that most need the relief of finding the other side of the keyboard someone with this disease but if we do not unite we will remain a silent minority, in some cases suffering and hopeless.

I'm glad this will be helpful but when I said we were a ghost for Social Work or Calling was intended to be so we left. Nothing to join Volunteer Phantom XXD!

We will not change anything, we will continue looking like freaks and have employment discrimination, family, and we become zombies at will.

The fearful of receiving a drug treatment? Big problem, no treatment is not relieved.

The fearful of being seen by the family as exotic entities? Another problem seems to feel "guilt" by getting it

Fear is not an invader from another planet, is very well promoted from a tacit principle that eats you in my ear saying "you're not like everyone else."

And I said that there are worse cases in which one thinks exorcisms, luckily the Middle Ages was far and no bonfire for us ...... but many of the emails I receive relate tough situations.

I went and spent at times confusing, remember every one of the neurologists who visited and tests with different drugs.

There is no denying more information, I would not pass them to other, in endless pilgrimage, going from doctor to doctor, psychologist, psychiatrist, psychic or whatever and finally to a neurologist .... that has to be the beginning not the end.

To all who wrote thank you very much, this is worth it if at least one of you feels understood.

We meet soon.

Sleeping With Bello, my namesake of Mexico for the active voice of this blog and Sea, again, from Madrid wants to unite America and work hard for this restless sleep despite .......!

So the greeting, Fine and Beautiful Sleeper, I invite you to read all the info. Blog and to communicate.

This is a sleeping sickness but ... watch out! not believe that we are asleep ...

Sleeping Beauty

Related posts:

2009 June 29 2009

I have narcolepsy, good news in Argentina

Category: Uncategorized - admin @ 22:09

One day from my experience I invited everyone to post their own.

The free care or at least hospital charges was for me the most concern.

Insisting and yelling to the web for me and all came the reply.

Intramed, is a site created for and by doctors who dumped updated information on different diseases and gave him a place to narcolepsy.

The information is interesting and above all reliable.

The part that we, the seekers of answers to our disease of interest is the care and accurate diagnosis.

Copy of the data, do not forget that is the job of reaching Intramed many professionals. I am deeply grateful to Dr. Maria Prats for permission to quote this information!!!

Narcolepsy

Also known as:
Gelineau syndrome,
Narcolepsy-Cataplexy,
Hypocretin-deficient narcolepsy.

Narcolepsy is a relatively rare sleep disorder, but is rarely diagnosed correctly. Its main symptom is the presence of "sleep attacks", "unexpected and compelling" that manifest themselves during the day. These are present in 100% of cases and can last from minutes to an hour. Other less common symptoms include cataplexy or cataplexy (70% of patients), which is sudden and reversible loss of muscle tone. It is usually partial, limited to the muscles of the face and neck and its duration is very short (<1 min.). The episodes may be triggered by intense emotion (eg,: laughing, crying, anger). Sleep paralysis (present in 25% of patients), is unable to make any movement in the transitions between sleep and wakefulness while the person is fully awake and alert.

Sleep hallucinations (present in 30% of patients) are generally hypnagogic (at the transition between wakefulness and sleep), and can be visual, auditory or somatic, and are very vivid. All these symptoms are manifestations of abnormal intrusion of REM sleep or in waking life. In spite of having excessive daytime sleepiness, nighttime sleep is often interrupted and nightmares abound. Despite being considered a rare disease, narcolepsy is as common as multiple sclerosis or Parkinson's disease is more common than cystic fibrosis , though less known.

Reference centers and specialists:

"University Center of Neurology: Dr. Jose Maria Ramos Mejia"

The Center is located in Ramos Mejia Hospital, located on the street Urquiza 609, Buenos Aires, Argentina
TE: 4127-0438 and 4127-0281
Website: http://www.ramosmejia.org.ar/

It works in the Division Neurology, Ramos Mejia Hospital in Buenos Aires, and its leadership is exercised by Prof. Dr. Raul C. Rey. The application turns the care of patients in the different subspecialties is made ​​in person Monday to Friday from 8.30 to 11.30. or the following TE: 4127-0438 and 4127-0281.
The Second Opinion Clinic, works exclusively for medical referral, arranging shifts to Dr. Alejandro Giachino.

They serve all kinds of neurological diseases, specialized clinics exist at:

  • Epilepsy
  • Abnormal movements,
  • Headache,
  • Vascular Diseases,
  • Neuroimmunology,
  • Cognitive disorders and dementias,
  • Neuromuscular Diseases,
  • Demyelinating Diseases,
  • Myasthenia Gravis,
  • Motor neuron disease,
  • Neurogenetics,

• Pathology of Sleep.

Now I greet you once again and hope to continue discussing their experiences and needs. We can see that being "awake" achieve the desired "quality of life" I have good dreams

Sleeping Beauty

Related posts:

2009 June 15 2009

Narcolepsy solutions. The importance of uniting together and communicate

Category: Uncategorized - admin @ 21:05

In the short time that this blog I have received comments, questions, requests for help and information.

Although the same disease will lead to withdrawal and confusion, remarked once again the importance of communicating with us to give a positive outcome.

There is little doubt among those affected, not everyone has narcolepsy or do not know for having some of the manifestations of the same and not the whole picture. If autoimmune, or maybe a predisposing gene and so is the list of possibilities.

That's from the medical and technical as you will read in the other post is very wide spectrum .........

The question is: What's wrong with you to the disease or with uncertainty if you have not diagnosed?

What are the steps?

How to access health care?

What medication is prescribed and you can not buy for the price?

Would you need a therapist to relieve the burden of disease?

Do you find that psychologists "interpret" your neurological symptoms when they are?


From the NEA (Spain) Mar told me are trying to spread in schools the information needed to understand whether the "lack of performance" may be due to narcolepsy.

I added a link, which created Murcia Germain giving aid to a student and I find something worthy of note, teachers investigating the difficulties of their students and support them! See it on the right side of the page.

Everyone is looking for answers so it is best that we are in contact, anonymously if you wish. Everything will be respected in this space and will soon try to build support group, self help, advice and a bit of battle, why not ...

I invite you to stay away from the place of the world where you are

Do not be afraid to find out what is happening to you is the only way to live better

tengonarcolepsia@hotmail.com for all your questions

Sweet dreams and rest your best!

Sleeping Beauty

Related posts:

2009 may 25 2009

Narcolepsy: a ghost on the budgets of the Ministries of Health and Social Work

Category: Uncategorized - @ 13:37 Sleeping Beauty

We talked about the symptoms, you can read in the other post.

Those who have no treatment or diagnosis, daily suffering of family members, something that is incomprehensible to him and that creates discomfort and a feeling of inadequacy to everyday life than just "load inks" and makes them feel worse.

Sleeping Comrade Bello has another sleep disorders and is on the theme of performance and lack of coverage in the health services, public and private.

Laura works on her blog to disseminate and clarify. John tries to regain his for the same reasons

Sara was a little scared because his doctor gave him to understand that this is a "progressive" and that we fill with symptoms ........ containment and information she needs and many more we know and we can accomplish things that we like.

Letty, of Mexico, like sleeping beauty, understands that it is costly to enter the wheel of the necessary studies for medications then have to pay .... and at what price!

Mar, Madrid Association provides volunteer work and experience to reach out and improve the situation.

And we all have something that concerns us most.

To me is indignant that no longer exist for health authorities.

As Bello said Sleeper, is that when we do not just revenue?

There in Argentina Compulsory Medical Plan (PMO) that provides higher discounts drugs, this is from psychosis to contraceptives.

Ok, and what I do (and you) that I have to pay MODAFINIL and others, but give me a certificate certifying that a condition is "permanent and irreversible"?? Not to mention the "authorizations" that I must complete for each recipe even if you know it's permanante, I suggest that I take care to have a good supply of drugs and / or recipes for not giving them the responsibility to extend a facilitator ... nothing is the so-called "quality of life."

Those who live in Argentina and with the condition: do not think we should demand rights as was done with the Obesity Law and HIV? If they did it and with just cause ...

Is not it time we start that, though few, are human beings part of this society and vote?

A CULT PEOPLE CAN NEVER BE ENSLAVED. Manuel Belgrano

A hug to all and good dreams ...

Sleeping Beauty

Related posts:

2009 November 2009 may

Fear and risks during Sleep Paralysis

Category: Uncategorized - @ 15:34 Sleeping Beauty

Sleep paralysis is so far still the subject of greatest concern to all. That is, we have hypersomnia, cataplexy but the dream world can be scary.

In Laura's blog (see the link on this page) is a very detailed explanation of everything that was happening throughout his life.

Despair at the time of feeling paralyzed will "control" over time, when we understand that we are not victims of a "demon" that holds us it is the short circuit between wakefulness and sleep. So far so clear.

Each time it happens, some do not, we may be feeling presences or listening sounds. There are also times when we think we get out of bed and go through the house, all in a confused manner. Are we in bed paralyzed? Are we up?

Let's divide this into two: fear and danger

What we perceive to be frightening, is a phenomenon produced by our brain and in any case whether images or sensations refer us to a story or situation in our life, we go looking. It may be that the "content" has any relationship or just what the phenomenon is shot and not worth getting lost in complex analysis looking for answers.

If we know that this happens to us, is just relax and wait out the state of paralysis. The problem here is that we wear and the day may be crossed by the episode, lower mental performance coupled with the desire for a "siesta" We complicated the day. If you are with proper medication, the paralysis is greatly reduced.

And here comes the second part you want to draw attention. Not to "fall" into another palsy do not want go back to sleep. Some of us want to smoke or eat or give us a coffee until losing the heaviness or discomfort caused but ... we care! There are involuntary acts can not remember and that lit cigarette to calm it was slipping from our hands to fall into any place or had the urge to turn and did not arrive again being captured by the dream ... then?

Advice from neurologists, never smoke in bed, you do not have near matches or anything that can be dangerous and lead to an accident. It is better to have a glass of water near the bed to get up to light the fire to make coffee. It is a hazy moment, we can not be sure that your reflexes are good, and we exercise control over our actions, so it is better to be forewarned and care a lot.

If you have had some experience and if you want to leave a comment so private "contact" to be answered well.

Much encouragement to all and good dreams ....

Sleeping Beauty

Related posts:

2009 January 2009 may

Hi friends ..... today narcoleptic Cataplejías talking about?

Category: Uncategorized - @ 9:05 Sleeping Beauty

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

Related posts:

2009 April 21 2009

Sharing experiences

Category: Uncategorized - admin @ 0:24

Traveling through some forums I have seen many people describing the symptoms of Narcolepsy d and either sleep paralysis, the need for sleep or rather, the uncontrollable desire to sleep during the day several times, fragmented sleep at night ... . but what ends up not visiting a doctor who can give an answer?

The purpose of this blog is that everyone can read the symptoms, know they are not "imagining" that this happens, you are well informed and when they arise in the consultation were asked to perform the necessary studies. We are not alone if there is another who shares his experience and create solidarity possible.

Let the dark to Medieval times, today it seems like a fiction, is diagnostic.

I kept asking, but the answer was no, until he got a friend who suggested I visit the neurologist. She had epilepsy and I better understand these issues. From there I jumped at the reading of "The Man Who Mistook His Wife for a Hat" by Oliver Sacks recognized neurologist, to explore the variety of neurological diseases.

http://es.wikipedia.org/wiki/Oliver_Sacks

Now that we're communicating between all could go one step further and see what rights we have in society, at least in Argentina, you think?

As a pre-existing (but do not know you have it) the prepaid not going to accept. I was taken down about neurology services when I wanted to be a member of the British Hospital. Public hospitals .... few if any have the equipment for polysomnography. What about medications? Son Faces.

Friends, do not be discouraged with the latter. If you were a law of obesity .... maybe we can.

This post is dedicated to Juan, Almeria, Laura from Argentina and Andromeda in Madrid since his blog http://luzdeandromeda.blogspot.com/ spread it.

Until next time good dreams.

Sleeping Beauty

Related posts:

2009 April 10 2009

Life in the Dream II

Category: Uncategorized - @ 17:55 Sleeping Beauty

Narcolepsy is a set of symptoms among which are excessive daytime sleepiness, cataplexy, sleep paralysis, hypnagogic hallucinations and hypnopompic. This is called Gelineau syndrome.

 

I want to draw attention in particular on Sleep Paralysis. I struggled to find literature, many in English but, the story of a patient either checked by the doctor is enough to start.

The disorder occurs between wakefulness and sleep or, conversely, from sleep to wakefulness.   In this "stretch", which can range from 1 to 30 minutes, the body remains paralyzed but have notion of the environment and the inability to raise uncomfortable. That is, it remains trapped between these two states, making an effort to escape imaginary. We think we can move, breathe very hard, trying to talk and just get to move the eyes, enhance our breath and make a sound, and if we are lucky to be accompanied by anyone who can touch us or say we will have our name out of the trance.

 

If we put a touch of humor should remember those movies of the '60s when, who feared being buried alive, buried became a device that included a bell to call from the grave. That is the catalepsy and Edgar Allan Poe in his story "The Premature Burial" is described. In something resembling felt, which terrified me in childhood ... but sometimes we use the description provided for those who have no idea what we are talking

 

The scientific explanations that are posted and not be removed for clarity.

Now it comes to sharing these symptoms and understand how to live better and treatment is right ...

Related posts:

2009 April 3, 2009

Life in Sleep

Category: Uncategorized - @ 16:17 Sleeping Beauty

In "Moulin Rouge", the Baz Luhrmann film, breaks a character who claims to be Argentine and have narcolepsy, eccentric detail that surely was skipped by most viewers.

Gus Van Sant began his film "My Own Private Idaho" with one frame showing a dictionary in which we read "narcolepsy" and the definition of this disease.

The question is narcoleptic intone:

Is there who know their existence as well as the Doctors of the Institutes of Sleep?

Are there others or just a construction of literary fiction?

There continues to surprise, because there are never enough explanations we give one or two friends who might want to listen, a couple, husband, wife, mother, aunt, co-worker.

And we wanted them in the office next to us and the neurologist told loudly, it's true!

The patient has sleep, short sleep irrepressible, a few hours a day continuously useful without some naps. It is not laziness, it wanders in a sleepless night, is called "fragmented sleep". THE instant cause REM sleep paralysis, frightening phenomenon that leads many to believe in astral projection. No depression or temperament given to plunge into seas apathetic! No! Narcolepsy and this has been accompanied by other symptoms creating Gelineau's syndrome ...

Related posts:

«Previous Page - Next Page »