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
PS: I mention not only Colombia, also in Chile, Mexico and Spain are joining and accompany us away!
October 14th 2009 at 23:21
Bella!
You could not have said it better, because our greatest weight is not fitting in this consumer society, unable to keep up with so many who start their day early in the morning, and during the day produce "normally" ... definitely do not fit, although we want and all we tried repeatedly. But I simply at 7 am I can not think, my brain is off, and at 11 pm is in full production, after many years of trying to change this (and go like 10) I've just been very tired, stories of many Sleep attacks, many blame (my dad starts his day at 5 am) and many fights with myself ... Only now, that I have, I am learning to understand my natural rhythm and showing respect for a bit, things begin to improve many in my life.
Thank you for this beautiful blog ... I could not have found a better space to hear and be heard!
October 21st 2009 at 18:10
I want to do many things .... makes me so angry I fell asleep ... missing hours at my day ... But no choice but to assume that if we want to pay, he plays a little sleep over the bill ... a little more of what you want ... no eyes hurt? I go to sleep because I was late and tomorrow is a tough day, I have to stay awake for more than 10 hours straight ... as I do??? still do not know .... the motivation of my work helps a lot, and sueñitos on the subway and bus ... thanks for Sleeping Beauty delighted with your writing! and thank you all for participating and making this a self-help therapy!
December 14th 2009 at 7:39
Hello Bella, got up early today, because you tired of not sleeping, I decided to get up. I tell you that in my case, I had a fight with my social work, pre pay and charisma, because they would not recognize a genetic test that the doc had ordered pair Podesta final confirmation. Does the high? 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 have recognized something (yes, I danced on one leg, but accumulated anger). After an hour of dicusión, the conclusion was that we were "guinea pigs", that science progressed more rapidly than social work could bear, we were in limbo, in an area of "medical vacuum" where we can do little for being so "unique and different." I, very angry, I replied that I had 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, royalty totally discriminated against. 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." Dah, payment for something, and with much effort, a social work "1 ° line." Pathetic, and without consultations with the spiquiatra, not month covers and remedies, of which only 40% cover me. So we are. Abused, cast aside, just for having a disease "new, underdiagnosed and poorly studied." I think I abused a lot of the quotes, but marked the illogic of some things said out there. Greetings and have a beautiful and quiet all day. Lullaby
December 14th 2009 at 21:26
Querdida Nana, there's something you should know Social Works, Pre paid or whatever you call itself.
Narcolepsy is permanent, chronic and irreversible. I reached?
For a while I OSECAC, social work association with which I had a polysomnography at a cost to me $ 25 when its value at that time was $ 700. I waited a few days to sign it and go. I do not know what that will be today.
It is simply a dicriminación as I have understood that some include a facelift every two years ..........!! Speaking of the more expensive plan in that count.
And if I want to have that result you said Doc, it is My Health and My need to know how to take my life, I can not? A total absurdity.
Medication is another matter. There is a Compulsory Health Plan. PMO and the Ministry of Health page you can download the list. You will not find modafinil. If you like diabetics need insulin to function normally, what is the difference?? Should cover 70 to 90% just to be something chronic and irreversible!!
There is something not to be "close" in the business I guess, but do not quite understand what it is.
Sometimes, when I talked to some auditor you almost come to the conclusion that their ignorance is greater than their greed. They do not know what this disease and gerencian Calling??
Ignorance kills and this is serious. So the task is to promote and require the inclusion of our drugs in the PMO.
It will come. Ourselves we will do so.
Have a good night. A hug
Sleeping Beauty
January 13th 2010 at 1:21
Hi Bella, I'm from Puerto Rico. My daughter Yajaira been reported to you and told you about my case. Do not know how you told, but convinced me to go and read some of the testimonies. In truth, I've read some of the testimonies and experiences of other people and say "it happens to me." He gave me desires to mourn. No sadness of knowing if there are so many people going through the same or happiness of knowing I'm not crazy or posecionada.
Sorry if you find horror spelling, but between the English and Spanish, I do not even like writing.
Since young I have had the experience of being in a club dancing up and down the floor time and not have any kind of reaction. That take me to the hospital and think I'm dead or something. In my case the first occasions that I began to happen I had like 20 or 21 years old, now I have 50 years and when at last after 30 years are able to give me a diagnosis. As the years passed my situation was getting worse. At first if I had a fit as I was saying or an episode, it was a bad time, stress or a surprise or give me bad news. But it was not run, I can say I could give might please some two or three times a year. Whenever I wore to the hospital made me a sedative and would tell me that they were anxiety attacks.
I spent so many experiences that could write a book (not a bad idea) :). For my work as I've traveled a lot and done in many hospitals across the United States travez. Before my symptoms were more simple, I usually collapse, but could hear everything around me, I could not open his eyes or speak or move, or make any gesture to let them know she was alive. Paramedics hospitals I always give cantasos empiesan chest, I put ammonia in the nose ect ... I do not react to anything, it simply awake when awake. I usually felt when I woke up very, very tired and then it was to actually sleep the next day and still felt like I had drained all the energy that existed in my body. But now I spend more run and are more symptoms. Which had already managed to overcome the stage of the panic of not wanting to go to work, because, as mentioned before, my job consists of traveling, both by air and by car and long lead time and always alone. I was panic alone in another state, or be leading and have an accident and not just kill myself but I could kill another person. I spent some time visiting psychiatrists, because they do not want to work or leave, I was panic comensaron be alone and give me medication for panic attacks. Over time Comense to feel more secure about me and I returned to my work, though I always gave my episodes.
I went to many doctors, I miss so many studies have one thing and another but never gave to what had, or rather with what I have. By ignorance of science, medicine for the unknown, now my condition has worsened. So many years taking many different medications, which in truth I was not doing anything either, because they did not know what I had another day ... But I will tell you as my condition has worsened and another note, I'm not medicated because my insurance does not cover my medication.
Bella was a pleasure to vent a little, now and all I'll see if I can sleep. Here in Puerto Rico are 2:20 am to sleep and I wake up at about 6 or 7 in the morning after breakfast and again adormir. Now comes the afternoon and I have all the energy the world.
Have a nice day ... or evening.
January 13th 2010 at 9:02
Dear Mildred! I'm glad, though not enienda well, you and I together with all who have this disease know the relief of being in front of a doctor who tells you what you get there, is a disease probably genetic, autoimmune, etc, etc
Your episodes of falls with a conscience is clear cataplexias. Many people (not so much now) spent 40 years to be diagnosed and before that received inadequate treatment!! It seems fatal, right? In late what we live?
Mildred, everything will improve. No matter how you write, go to the forum and share more stories and solutions!
Have the best dreams!
A love for you, your daughter and Puerto Rico
from Argentina
Sleeping Beauty
11th May 2010 at 0:26
Bella my case is rare and doctors who visited puertorico and I think I have sleep disturbances and possibly narcolepsy. I always lose sleep at night and every morning I used to have a general numbness and then he lost mobility throughout the body, I could not move or speak but tried but the most unusual is that he never lost the consiencia. Sometimes my mother was raising me and I listened but could not wake up or respond if I tried. When that happens to me I numbs the body I can feel my heart beating very strong and I feel breathless. This happens to me since I have about 8 years and I have 22 and no doctor is able to give me a diagnosis, is most I dare say that neither case do me the truth and that worries me. Sometimes when I feel my body starts to numb try not to let me sleep if I sleep I can not lift for a period of 1 hour or more. If I'm alone because I have no other choice but to wait to wake up. This does not happen every day as in childhood and adolescence but whatever I care about I have the fear that this will happen when I sleepless again. I wish I refirieras someone who can help or send information you'd appreciate. Natalie
11th May 2010 at 19:30
Hi Natalie, I just read you understand, is a complicated situation that you create. Some of the symptoms, especially tachycardia or speak of a general paralysis, may imply that it is panic or some psychological issue.
Before issuing an opinion on you by your attending physician must indicate consultation with a neurologist who specializes in sleep. He will tell polysomnography and Multiple Sleep Latency Test. Do not be discouraged, there are several diseases like this that, while treatable, the diagnosis often takes time. There is in the group face a guy from your country, josé omen, perhaps he can help with professional data. A love and kept in touch.
Sleeping Beauty
10th June 2010 at 12:22
Hello, you would need your help because I think I have this sleep disorder, daytime sleep attacks me go I can not even move, I'm having a hard time because I spend on my work. I feel lonely as people around me thought that I just want to sleep because I just love, and not, I searched for information and I'm sure I have this problem. Where I can find help? Thomas had to go to a neurologist? I am ashamed because I think nobody will believe me.
Anni
10th June 2010 at 19:38
Hi Annie, I do not know what country you are, but I think today the sleep disorder specialists are a rare thing; are neurologists who specialize in diseases such as narcolepsy, insomnia, etc.. But it is true that a general, very few doctors know narcolepsy and thus before the consultations, pay no attention to the symptoms and do not derive accordingly. In my case, I consulted a specialist who sent me to do the studies in a sleep laboratory. Do not feel shame, or despair, we maintain calm over everything and spend all the time you need to find the help your body cries out. Worth, and from here you do stamina for anything (you came to the forum? There you will find lots of good data ...). Luck!
November 17th 2010 at 11:56
Hi Bella, I'm from chile, I'm in my second year of college and Na sleepiness during the day and I have become a real drama, I fall asleep on public transport often, I can not sit or lie down for a long time if I want to read something or see a movie because before I fell asleep to see how, I realize I'm waking up. In class the same, I prepare to take notes and suddenly I see that there are lines in my notebook while reicorporo me when I sleep I have nightmares tired als I feel I can not move, and when I've slept together have said that there are times I do like running or I move his arms wide as if swimming, that does not happen very often but if sueñlo enough, I do not know if more than usual or not ....
The most uncomfortable truth is dealing with the pace university and my sleepiness during the day, I went to the doctor I only get worse vitamins and tell me it's stress, I have not seen a specialist yet because I have not really clear how to approach, as explain what happens to me and believe me and I see only as a neurotic girl who probably sleeps 3 hours a day and has depression. But I consider myself very active and happy and try to sleep you need to at least "work" the next day.
Unlike other testimonials I read, I in the morning I awake energetic .. But after 40 minutes or an hour I have much sleep again as if it was bedtime.
Truth does not know if I have narcolepsy, or simply sleep disorders.
You told the doctor the first time a doctor will take it seriously?
Actually I do not know if I seek an answer or just to share my experience, but I would like to know you think you and the rest.
November 21st 2010 at 20:55
Sole, your description is very clear. In particular dormrir mode, nightmares and what others see while you're asleep. Nothing neurotic or depressed, these are things that go aside, whether or not narcolepsy. I myself like you wake up with energy, then I lose.
The first time I took seriously was in consultation with a neurologist. Maybe make some studies may be useful to improve your schedule and performance in college, that with medication or other way to accommodate the schedules. There are good neurologists and sleep specialists Chile. I will take the data that gave me some and I write again, so if you are in Santiago. I think I know is good, then you can decide whether or not a treatment. A love and good luck
November 21st 2010 at 20:56
I did not sign the comment, these distractions! Greetings again Sole
Sleeping Beauty
November 25th 2010 at 9:48
Hi Sole, if you want to you and / or other co-narcolepsy, Chile, I have in fact Dr. Ruben Ramirez, gift of serving not know but maybe you can locate, specializes in sleep.
Regards
3rd April 2011 at 14:54
Hi Bella, I write from Chile, I tell you that two days ago after a month and a half of doctors and hospital to my 15 year old son was diagnosed with Narcolepsy.
I have read the forum comments and found it quite good being able to converse with people suffering from this disease, I am just as concerned as you've suffered a lot of breast helplessness and sadness at seeing my son like that. It happens to me but I understand quite well, I see my son sleeping almost all day and wake up just as tired, suffer from insomnia all night because sleep is terrified by the things he sees and hears, has even unfold is sufficiently terrifying for him, can not laugh, or mourn or be nervous because immediately give cataplexy crisis losing all control of his body, fades and falls asleep right away, sometimes not but fall and can not stand alone, it is sad all and I can not tell without my eyes fill with tears, he was always cheerful and smiling, with the punch in the mouth and now terrified laugh, thank God gave neurologists with the diagnosis after a polysomnography and latency test, now at least he does not think that is going crazy or possessed by demons, but starts in two days with treatment, only pray to God that something better, unless your quality of life more pleasant in all. Next week I go to school and believe me I have great anxiety about leaving him alone and see how he's going.
Thanks Bella for this space, which similarly demonstrates the family of people who suffer from this, it saddens us to see how much suffering and not knowing how to calm their concerns and will be your future, whether or not they be able to confront people like you say are totally ignorant on the subject and yet dare to say and point fingers. May God bless all who pass by this and are of great force.
Also I'd like contases how could help my son but do not want to be too overprotective or do you feel is abnormal, ojalas and help me in this so I can help him.
A big hug.
4th April 2011 at 23:07
Hi Christina, there is something I would like your child knows is that we are many. That although she thinks this gueste: boy was diagnosed, that is great because most of us are diagnosed with larger, so we went through those fears nightmares, night terrors and sleep is normal that night. If for no vestments is that sleep is fragmented, so there "awakenings" frequent. With the medication is going to wake up less at night and the day will be better. Anyway he himself identifies their schedules to mini naps, when returning from school, before dinner, for each is different but a nap in the middle of the day will relieve a lot. To consider when you're awake, at the time best for you.
God willing I hope I have another tour of Chile and everyone we meet, if you're in Santiago.Explicale that is neurological, not panic. We have already scared everyone when we did not know what happened.
It is always best daber all, the sooner the better! A hug, a lot of strength to both.
5th May 2011 at 13:52
Hello! I'm from San Juan PR. Joyful I know that within the whole (society) I am not alone and someone out of what my physician and family ... I comprende.Esto is horible!
Do you know if there is an association PUERTO RICO narcolepsy?
November 29th 2011 at 19:18
Mildred Hello, hello ..... Zionadri'm from Puerto Rico and tengo28 years, I suffer from narcolepsy with cataplexy for about 5 years but in January this year was when they managed diagnosticarme .... Zionadri, no, no PuertoRico support groups, as well if they think doctors do not know what is narcolepsy or cataplexy when you explain the symptoms!! I spent a year looking for people with this but the six neurologists to whom I have gone, none has addressed cases like mine, that is none like our own .... The Vedad is that I have my family support or do not understand pq what happens to me, I would love to contact them and perhaps meet in person and between the three narcepticos start a group in Pueto Rico ..... I think???? Are encouraged? I leave my e-mail, if you live in Puerto Rico and committed people looking for you and me write me even give us support each other .... wildvaquera@hotmail.com Narcolepia put as title and saber and q are of this page! What better support the power contr someone who feels the same as you! Sleeping Beauty I congratulate you on this blog .... Very grateful .... I tell them I did not doctor, because I can afford the medicine n "Provigil 200mg" but try to make my life as normal as possible, a fulltime job, I live with my daughter 5 years, I can drive with a companion as soon pq q feel the eyes are heavy handed as the chair of coductor ... but I challenge myself in my daily activities coninuar pq if I have no way to pay mediias I will not be groaning and sleeping on the couch pq going to get worse, so go ahead and retense yourselves, close your eyes for 5 minutes and the alarm in my work all take 30 minutes break but give me leave 1 hour pq home to sleep and write me back .... pq want to make a group on facebook .... Puerorriquenos Cuinse narcoleptic and sleep well hehe ...