Question 1

Here is the answer to question one.

1.) What specific symptoms of narcolepsy do you experience? For example, do you have to take two naps during the day, do you get cataplexy, do you begin to do things and then forget that you are doing them? Be as specific as you can. Tell me the exact length of your naps (if you need them), and tell me the exact details of a muscle weakness attack (if you get them).

* I have the kind of narcolepsy where I cannot fall asleep unless I am laying down perfectly flat and despite contemporary diagnosis I do not ever feel refreshed when I wake up. I have trouble falling asleep at night and do not fall asleep until the early morning. During the day I can fall asleep at any moment as long as I lay down perfectly flat and can remain that way for hours on end, even days at a time. I am prone to sleepiness all of the time and cannot feel comfortable in any position unless I lay down. I try and have one long nap (3-4 hours) during the afternoon but sometimes I do not wake up again till the next day.


* I have facial cataplexy and I lose complete control over my facial muscle tone and my ability to speak at the drop of a hat. I am in a complete stupor all day long and sometimes when I am shocked or startled I cannot move. For instance I cannot play sports to any degree of success at all because I am consistently in a stupor. If you ask me a sharp question or a series of questions rapidly I have facial cataplexy and cannot speak. My cataplexy lasts long enough that it is noticeable and sometimes I will go into a complete facial paralysis for as long as someone is speaking to me. I have absolutely no control over this at all. And, if I feel physically threatened I will fall down. I will buckle at the knees and collapse. I am incapable of physically defending myself.


* I have no consistent order in my life at all. I cannot remember from day to day what my overall long term goals are. I start projects and within 2 weeks I have forgotten them. I cannot remember other peoples names whenever I am introduced to new people until about the third or fourth visit consistently. I never remember other peoples important dates like their birthdays, fathers day, mothers day and I am always missing important dates of my own. During the day I can not remember one thing from the next. I have to consistently double check everything that I do in order for it to be accurate. And, I forget simple commands and misinterpret orders.

Additional symptoms:

I have an insatiable appetite. I have insatiable sexual desire and have abnormally high sexual relations with myself and others. I can not resist the urge to masturbate frequently.

I have sleep paralysis often. Sometimes I have dreams of either not being able to move some of my limbs in active physical dreamscape's or I have dreams of a loud screaming where I am paralysed while falling. During these episodes I am often terrified and though I try I cannot move wake up until they are over.

I have lucid dreaming states that can last from minutes to hours to even days. In my dreams I am often in control of all the dream facets. It is like another world where I am God.

I have active and present Hypnagogic hallucinations when I awake and when I fall asleep and sometimes even during the day. I can hear other people having conversations though they are not there. It is often so bizarre that I can engage these voices in actual conversation and the dialogue exchanged is not unintelligible. I am often shocked and surprised at the number of things I can learn from these invisible voices and the quantity of information they are willing to share with me and the quality and relevance of that information. (I can also tell you more or give you specific examples of some of these conversations. It is similar in nature to the divining of Edgar Cayce.)

I have automatic behaviour. I often drive for very long distances without being able to recall any of the events of the trip. I often read many chapters of a book without being able to recall any of what I have just read. (Though on an exam I am then able to recall the relevant facts and score quite well.) And, I often have to double check day to day tasks because I cannot remember what I have been doing over the last several minutes to hours.

The symptoms of narcolepsy have completely devastated my life. I have sever and serious social, personal, and professional problems because of my symptoms.

I have had narcolepsy since I was very young. As a result of the many international inoculations I had as a child travelling frequently between three different countries and a flu I caught at about the age of 5, I have never slept well again.

The symptoms of Narcolepsy run through my family in the classic maternal to son bond. My mother has excessive symptoms of narcolepsy. My younger brother also displays symptoms of a major sleep disorder. So, does one of my female cousins and my Grandmother now deceased on my maternal side displayed symptoms of Grand Mal Seizures, Megalomania and Narcolepsy as well.

To date none of us have ever been diagnosed nor treated succesfully.


Carloss

Question 2

2.) What treatments for narcolepsy have you already tried? Do you use stimulants during the day? Do you take short planned naps? Or do you use an alternative treatment such as herbs or acupuncture? Once again, specificity is key. I want to know everything you have tried that has or has not worked. Also, if you see a sleep doctor, I'll need who he or she is by name and what sort of treatment plan was offered and whether or not that worked. If you can provide contact information for your sleep doctor, it will be extremely helpful. I need to know this in order to suggest it to other people who have been diagnosed with narcolepsy or who are wondering if they have narcolepsy.

I have already tried Paxil and Modafinil. I use a daily dose of 200 ml of Modafinil in the morning and 200 more at noon plus one daily dose of 20-30 ml of Paxil every morning. I have also tried Seretonin and GABA. Seretonin did not work for me. It left me tired and very foggy the next day. GABA works very well for me and helps me sleep at night and release the human growth hormone I am missing from my lack of deep REM sleep that I need but, I find the cost too prohibitive to continue on a daily or weekly basis.

Modafinil has worked by far the best for me. It helps keep me mentally awake and alert and it helps me to concentrate but I do find that it does not provide the refreshing feeling of a good nights sleep that I need to combat the physical tiredness and fatigue that I feel every day.

Paxil has also help me nearly eliminate the symptoms of Cataplexy.

I currently do not see a Sleep Disorders Specialist. I have been a patient of Dr. Jonathon Fleming's of the University of British Columbia, Canada and Stanford University California (USA) Sleep Disorders Clinic but he has not diagnosed me. I have threatened him with medical mal-practice suit and he has had me barred from anymore clinical treatment of my symptoms here in Vancouver British Columbia Canada. I do not have a family doctor but do see Dr. Murphy of the Granville Street Vancouver BC walk in clinic for my medical disorder and he is the doctor who prescribes Modafinil and Paxil for me on a monthly basis.

There addresses are as below:

* UBC Hospital
Rm. G-285 - 2211 Westbrook Mall
Vancouver, BC Canada
V6T 2B5
* Map

* Tel: 604.822.7606
* Fax: 604.822.9744

and

Granville Medical Clinic
Family Practice / Walk-In Clinic
2578 Granville Street
Vancouver, B.C.
V6H 3G8
604-733-4700

The story of Dr. Fleming and I is rather long but interesting and I can tell it to you if you want. I also have a signed copy of the letter he sent me barring me entrance from his medical clinic and all contact with his staff. As a result I have not been able to secure a reasonable diagnosis of my symptoms and go without.

The legal tort I have threatened him with is still in negotiation with my as of yet unnamed lawyer and the court until such time as I find a reasonable and favourable diagnosis of my symptoms to present as evidence of his mal-practice. To date I have still not been able to see any other Doctor of Medicine in regards to my sleep disorder.

There is only the one clinic in British Columbia, Canada and I have only medical insurance valid for this one Province.


Sincerely yours

Carloss

Question 3

3.) How has narcolepsy affected your personal life? How did people perceive you before you knew you had narcolepsy? What sorts of general personality types were attributed to you that you found offensive (examples: “she's lazy”, or “he must have had a wild night last night,” or “she's depressed”)? What sorts of challenges, if any, did you face in supposedly “normal” social situations in which you were expected to stay awake? Once again, any specific story relating to this would be fantastic.

Narcolepsy has devasted my life. I have no friends. No social life. No job. No career. And, without a proper diagnosis and treatment I have no hope for the future. I have been misdiagnosed so many times I now live on a disability pension alone in an apartment and sleep almost all day long. I never go out. I cannot exercise and I worry about developing diabetes. All of the things I have ever had I have lost and every single relationship I have ever had has been lost and now at the age of 37 I feel there is no more point to this unless I get some serious medical help.

Before I knew I had narcolepsy people perceived me as unreliable, weird, eccentric, crazy etc. and I was a social pariah and outcast. As a child people took advantage of me and physically molested me and took turns physically assaulting me as well. My lack of enthusiasm for sports led me to be bullied against which I had no defences and soon became known to be the town wimp which led me to be excessively ostracized, outcast, laughed at, picked on and assaulted. This destroyed my self confidence and my ability to relate to normal situations with any success. I used to live in fear of being dismissed as an abnormal human being every single time I tried to engage any new or even old friends in relationships or worse yet I feared being beaten. My childhood years remain a complete foggy haze to me and I still cannot bring myself to closure or confrontation with my old oppressors.

Generally it was assumed that I was a drug addict during high school. I often heard teachers talk about me that I must be stoned all of the time because of my behaviour. I was of course not high when they spook of me like this. As a child in elementary school I was always on the receiving end of punishment and the usual accusation that if I only tried harder I could do much better. In my later adult years people generally thought I must have some sort of mental disorder and tended to treat me as such. Often times they would just leave me behind somewhere and I would inevitable be lost and hurt.

One of the biggest challenges I faced living with narcolepsy was and still is being able to make plans for the future and not sleeping in or being to tired to attend. But, the main challenge I think is being in a stupor. I have lost so many friends who cannot understand my behaviour because it is so loud, uncoordinated and generally unaware of the 'normal' context of socialization.

A specific example of this problem that has happened to me in nearly every single relationship that I have had is friends who call me to say they no longer want to be friends because I pose a significant risk to their other friendships which they value more highly than mine. Often times I cannot understand what they mean or if I can I cannot control the impulsive action that led to the dismissal of our relationship because at the time it is happening I am in a stupor.

Question 4

4.) What kind of an affect has narcolepsy had on your work life? How did employers respond to your daytime tiredness? What was it like not knowing you have narcolepsy and trying to convince your employer that you are a valuable employee? Are there any specific work related incidents that you would be willing to share?

I have lost every job I have ever had due to narcolepsy. Unfortunately most of my employers have let me go due to my daytime tiredness. Not knowing I had narcolepsy led me to wonder why I am not able to keep up like other people do. I tried everything from diet to sleeping in my work clothes so I wouldn't be late in the morning but nothing helps. I often agreed with employers that my inability to maintain a proper work place pace of learning or performing job functions was a problem and sometimes I would just quit knowing that eventually I would be fired.

In one incident which led to me being placed on a permanent disability pension I fell asleep on a ladder at work while holding a light torch. The torch flame spread into the wall of the building I was working on and soon the whole wall was on fire. It took many employees with many buckets of water to finally put the flame out and save the building.

When my employee asked me what had happened I didn't know what to say. I fell asleep but I couldn't remember exactly what had happened and I wasn't able to talk due to cataplexy so he fired me. That was the last time I ever held a job.

Question 5

5.) How has being diagnosed with narcolepsy helped or harmed your life? Do you feel a sense of relief or terror in knowing with more certainty that you have narcolepsy? How have others responded to your diagnosis? Are they supportive, or do they retain their doubts and still think it must be something else (for example, depression, etc.)? How has your diagnosis affected your work life? Is your employer supportive and flexible with you? If they are, provide the specific details of what they allow you to do. If they aren’t, tell me why you think they aren’t.

Being diagnosed with narcolepsy has been nothing but a blessing in my life. It has allowed me to make sense of my world finally. Having so many symptoms of something all at once and not knowing what is going on is sheer Hell. It has also helped me set realistic limits and goals in my life that I would have otherwise not known where impossible for me to attain. Unfortunately that also means that I do have to accept certain conditions in my life that I can't change but that knowledge is far better than then the consequences of not knowing.

I can say that I have definitely found relief in knowing that I certainly have narcolepsy. The consequences of the devastating symptoms of narcolepsy in my own life allow me to say that without any reservation. I think the most devastating consequence of having narcolepsy has been the lifetime, for me, of not knowing that I have a significant and very serious neurological disorder. And, how that lack of knowledge led me to misinterpret my many common symptoms of narcolepsy for other things which I could not ever abate with any success leading me to live a very unsuccessful and extremely psychologically tortured life.

I have had, unfortunately, a very poor response from the medical community here in Vancouver, British Columbia, Canada and the UBC Sleep Disorders Clinic has been completely unsupportive of me attaining a successful diagnosis or any diagnosis nor any effective treatment. The lack of medical services, diagnosis and professionalism has taken a very negative toll on my life. I am now in the process of having to head to the United States of America where I have no medical coverage to receive, finally, what I believe is appropriate treatment for a patient who may have narcolepsy. On the other hand most people respond with sympathy. Though there are times when they cannot understand the severity of the symptoms and assume there may be another way to deal with the EDS. I find it best to explain that it is a physical neurological disorder and that the symptoms are not psychological nor can they be treated by psychological means.

Since I am already on a disability pension for a mis-diagnosis the diagnosis of narcolepsy which I expect to receive from another medical establishment down south comes as no surprise to me. I had already lost my job to EDS

Question 6

6.) What can you tell me about the reasons why you didn’t think you had narcolepsy for so many years? What were other healthcare professionals telling you that had you convinced it might be something else (depression, laziness, etc.)? What was the straw that broke the camel’s back in convincing you that you have narcolepsy? For most people, diagnosis takes a very long time. Why do think it took so long for your diagnosis to happen? Once again, if you were diagnosed in a short period of time, just say it didn’t take a long time at all.

I think I had narcolepsy undiagnosed for so many years because of a lack of knowledge of the symptoms of sleep disorders in general. I also experience the symptoms of sleep apnoea and insomnia but was never taught that these symptoms might be indicative of a substantial medical problem so as a result I never specifically explained them to any doctor while searching for a cause for what I thought was possibly bi-polar disorder, schizophrenia, diabetes, depression or fatigue.

The one symptom that threw me off for years and now has me misdiagnosed as a possible schizophrenic is the hynagogic hallucinations. Complaining of hearing voices talking to me in the morning or before I sleep has had me prescribed various anti-psychotics none of which abated my symptoms and all of which greatly exacerbated my EDS.

The straw which the broke the camels back was the web site produced by Stanford University and the web site produced by Wikipedia which led me to it. Once I read even just a few symptoms of narcolepsy I knew that is what I had. It was like a revelation to me that explained every single circumstance in my entire life. The one line that had me finally break down and cry was "The symptoms of narcolepsy are devastating." And, at that moment I knew I was staring my diagnosis in the face because until that day my life had been unexplainably devastated by recurrent bouts of cataplexy and EDS. It has also devastated the lives of my family and those around me due to my non ability to comply with societal norms.

Like most people my diagnosis of narcolepsy has been hard fought and not successfully won yet. While I am on anti-depressants for cataplexy and modafinil for EDS I am still currently looking for a successful diagnosis of 'narcolepsy' from an accredited doctor or clinic or facility. I have only a long history of symptoms and one sleep diagnostic indicative of a diagnosis of narcolepsy but the clinic which I attended has sent me a letter refusing me further analysis and consideration because in frustration with what I believe was medical malpractice on their part I have threatened Dr. Jonathon Fleming of the UBC Sleep Disorders Clinic with suit.

The reason I believe I am being denied medical alternatives to Dr. Fleming's non diagnosis of my sleep disorder symptoms is because of the number of franchised medical clinics involved in my medical treatment here in Vancouver British Columbia, Canada. 30 some odd medical clinics I visited complaining of the symptoms of narcolepsy each and every one of which did not refer me to a specific sleep disorders clinic nor doctor thereof. A medical malpractice suit of rather gargantuan proportions if I am ever to receive a proper diagnosis of narcolepsy.

Which I do not believe I will receive here in Canada because I feel that Dr. Fleming is protecting his colleagues from a very substantial malpractice lawsuit on my behalf by denying me that evidence of diagnosis in court.

Question 7

7.) How have your narcolepsy symptoms progressed? If they haven’t, just say they haven’t, but if they have, please provide a full timeline of the progression.

In general my symptoms of narcolepsy have not progressed. Since the time I developed the symptoms they have been generally alike over the years. The only thing that has had any significant effect on the course of my life has been medication. I find that I am less energetic now on medication than I was before, probably due to the anti-depressants and lack of Dexedrine. But, that energy from modafinil is now more mentally focused, alert and intent than ever before. Which is a Godsend to me and a blessing given that before medication my energies where sporadic and somewhat wasted on fruitless projects I could not ever hope to accomplish without a diagnosis and proper medical treatment.

Question 8

8.) How important is it for you to be connected to other people who have narcolepsy? If they provide support for you, what kind is it? Is there a certain kind of support that they might not be able to provide or that you feel a family member or other loved one might do a better job at providing?

I am just now connecting with the narcoleptic community on facebook and have found them to be very helpful in finding information about new therapies or clinics. I am currently looking for a new sleep doctor and have received several suggestions from other people who have had a reasonable time being diagnosed and have had the proper medications prescribed to them without a lack of concerned medical supervision by a specialist of sleep medicine.

The other kind of support I receive is from friendship. I find we narcoleptics can become a rather isolated community individually and finding one another can be rather hard. For instance there aren't any PWN groups in Vancouver BC, at least none the sleep clinic of UBC could recommend and none I can find otherwise so contact over the Internet has been instrumental in finding others who share similar symptoms like mine and sharing our stories and sometimes grief's.

The only support I can not find or have yet to be able to locate is a dating service for narcoleptics. Sometimes, ofttimes really, with my severe symptoms I realize that I may not be the best choice for a mate of a healthy adult but, I could easily be a good companion for another narcoleptic looking for same. It would be a lot easier than having to explain my symptoms. I would rather date someone who has more medically in common with me.

Question 9

9.) If there is one thing you can tell someone who was just diagnosed with narcolepsy about dealing with narcolepsy, what would it be?

There is only one piece of advice I can offer victims of this or any other disorder.

"Find the people who are paid to help you."

This has been invariably true for me in my life and has helped me find strategies to solve a whole range of problems that I have encountered in my life. These people are generally genuinely friendly, earnest and helpful. Though sometimes not - discrimination does exist - they are at the very least easy to identify and very easy to replace if you are not satisfied with their services. And, they are paid by their successes and not their failures so there should always be a spot somewhere in their budget for you and the things you need.