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
5th August 2009 at 20:07
Hello, I would tell my experience. Not aware of the issue. I passed 2 years ago and I see a neurologist and I'm fine though is to talk to others like me. I did not know much Hente with this. A greeting. I will contact you privately.
Alice
March 13th 2010 at 1:03
Hi, also I have narcolepsy and I live in Mexico, dfyo the sufferings since I can remember but I was diagnosed in 2000, please contact me.
20th April 2010 at 18:35
Hello, all salute, this page really interesting.
I tell them that after 3 years, I realized that I am Narcolepsico, I mean today. Interests me much later that I was presented with the situation at noon, when it reacts. I started my search on the Internet, after a long search, I found this in Narcolepsy, I thought what happened to me had no explanation, it was very strong, will not discuss many of my acquaintances, for the simple fact that he felt the they would think I was crazy, or just going to justify something like that would leave without saying, that lied.
I have seen and read endless blogs and pages, really agree with this disease, symptoms that occur, I think it is very obvious. Enrealidad think I feel more relieved knowing that there is something out of the ordinary that I suffer alone, came the day you get to hear voices, and many of the symptoms enrealidad padesco of 26 symptoms, and was therefore in a situation I thought going to the church, but thank you for responding to this situation ...
28th December 2010 at 3:03
Hi Bella! while without hello! are almost 2 am and well, insomnia takes hold of me, it is not uncommon, and less if my mind many thoughts and fantasies abound me! I must admit I still feel "guilt" fear and if I feel different, not only for narcolepsy if not rare that I have more tidbits about health gral.Aveces would be normal, and not have to give any explanations, "normal" that is? that confusion very often with me, then, grab strength and security and there I go again, is like a "seesaw" is as if to shut out the ordinary world, I feel do not fit! go to "Narcolepsilandia" other neighboring country that I come wrong, unfortunately these places do not exist and must be "fit." You know that I have decided not to take any "cocktail" of drugs and Irmela carrying with restorative naps, but I feel as my family and friends do not let you judge, even if they say anything, I did not give a nadie.Es GUSTO frustrating! Anyway, just wanted to vent a bit, I write you from Mexico? Where are they hiding? I am SINGLE.
December 29th 2010 at 22:26
Hi Letty, it happens a bit the same, if there is that place in about two naps a day to be "natural", we eliminate the nightmares in the hour after waking (with calm and relaxation) would be better.
Everyone says to understand but ultimately that does not happen, we must be in our shoes ....!
It would be simple if we could work the hours that we are full (they are about 6) the remaining time to live, have our projects and above all, no guilt. We do not decide this, as no one decides to have diabetes, or other neurological disease. Family members have to give them a sheet with the hypothalamus, within this they draw few orexin and then expand to other things that come with narcolepsy. Well, I understand your loneliness. One wonders if we are so apt to communicate, investigate the disease, blogging and so on, why such a hard time understanding people? Do not worry, the same ones who want to be understood by their ailments and we hear them!
I spent a Mexico Blog
http://www.narcolepsiamexico.com/
Maybe they can do something together with this girl. Anyway, I kept calling from the face of Beauty, and appear!
You start the year well and dreams be propitious. Good year toooods narcoleptics!
3rd December 2011 at 21:46
I am a teacher I have a student diagnosed with narcolepsia.como proceed when in sleep period. help please
December 26th 2011 at 0:06
Hello, not your name or if you're in Argentina or another country. There are many teachers, especially in Spain, which have given a space to their students and let them bring their own pace. A person with narcolepsy has the capability for any type of study, but it is advisable that after several hours of class, when in "cold" and REM episodes prompted the work. It should be for another day. It would be interesting to talk with parents and the physician and especially with your student, including all come to fruition. Regards
26th December 2011 at 19:51
Hello, Sleeping Beauty, if not the right place to ask, but you still walk the forum (narcolepsia.com.ar)? because you can not enter the site. The truth we need to ask, I forget who it was who had told me to pass me to go places to study in Argentina, and I told him I was going to finish first look at some things and then asked well. In any case I ask you, I have a constant sleepiness and hypersomnia take a modafinil (vigicer in Argentina) and I had no effect, even with a tablet (200mg) and not to think about. Although rather tell it on the forum by the sequence more than anything, so I hope your answer. Thank you.
27th December 2011 at 11:41
Hi Jonathan, blog and forum were hacked, and lost the Forum. For now it is complex operating it again. If you do not want to reflect your query pruned write tengonarcolepsia@hotmail.com
We anticipate that the free sites of which I spoke a hospital is the Posadas and I (to be confirmed) that the Ramos Mejia has special sleep unit when second opinion because you were treated at the Hospital de Clinicas ...... although I think Clinics not have the polysomnograph! The other places, there are serious and not so much because they may have computers but must be evaluated and a few years ago I went for the social work a scary place
Only was the mini portable polysomnographic and even closed the door tightly, or listening to the TV for those who did, the phone .... in short, the least serious. Then one of the most recognized is the Institute Fleni, but we must see if you have pre-paid medicine or something. Particular is not very cheap no sleep issues, studies are expensive. Greetings!
28th December 2011 at 0:21
I really do not bother asking here is that the issue is well understood to have to explain everything and if I could go better, but no matter I ask you.
The public or social work mmmmm ... I think I was going to complicate it further than I have (I live in southern, Berazategui) and social work was difficult but I managed to get enough. But tell me one thing: the Fleni is recommended mostly to the consultation? because my problem is the diagnosis, because I go crazy because the doctors tell me saven. Then I need to go to a place where dreams and try to know all the problems you may have.
In summary, the Fleni what other options? Does the German hospital or IFN (Institute of neurologís Ferrero) know them?
PS: If some saves have taken modafinil and do not effect?
Thanks for the reply.
7th January 2012 at 12:12
Hello, I always try is to know where we can have free care hospital. Hospitals such as German, British, Italian and others have units sleep, many more. I dare not recommend because each person has found a different experience. The institute that you mention do not know, try to tell me, but if we are deprived of it, if it is not social work or pre-pay is complicated.
On the use of modafinil, I think that should say a doctor, may not be appropriate medication even if you have hypersomnia then prescribe others.
Greetings!