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Tuesday, September 12, 2006

A little more info...

I've been racking my brain looking for the silver lining in all of this. I started this blog as a positive force and with all that's been going on with my health I sort of lost that along the way. Here's what I think...My whole goal was to lose weight and improve my overall health. I guess that getting to the bottom of why I've been experiencing this serious fatigue all these years is just a part of that quest. Of course I'm tired all the time and I can't focus on my daily routine and I know that my lack of sleep is not helping my weight loss but if this is what it's going to take for me to sit my doctors down and make them take me seriously then so be it. Then we can finally get to the bottom of it all and I get the proper treatment for each of my conditions instead of lumping everything under obesity and diabetes and hoping that they all just work out.

I saw my Internist again today and he seemed to finally listen to all my symptoms. He changed my sleeping medication and he referred me back to my behavioral medicine specialist to discuss a referral to a psychiatrist who is the most qualified to diagnose and treat Sleeping disorders. He even finally mentioned that he was not to up to date on the treatment of sleeping disorders (which to me explains why he seemed to never really acknowledge it when I mentioned my sleep attacks before). I think he hears me now.

So there's my silver lining and I plan to keep plugging along. I just have a few more factors to add to the drama of it all. Looks like it's gonna be more exciting than I had planned. yay for me... ;0)

And for those of you not familliar with NARCOLEPSY I coppied some facts for you. When I read it it was almost like some one took it all right out of my head. Now keep in mind I haven't been diagnosed by any means but I experience all of these symptoms and have for a couple of years now. I always thought it was caused by my weight and thought that I was just fat and lazy. Anyway...here you go...fun stuff huh?

http://www.narcolepsynetwork.org/faq.php

1. QUESTION: What is narcolepsy?
ANSWER: Narcolepsy is a sleep disorder of neurological origin, characterized by excessive daytime sleepiness. It can begin at any age and continues throughout life. It frequently becomes noticeable during the teens or early twenties but it can also appear later in life. Predisposition to it seems to be hereditary. It is believed to affect approximately 1:1,000 people of both sexes and all races. It is not degenerative; people with narcolepsy can expect to live a normal life span.

2. QUESTION: What are the symptoms? ANSWER: There are four primary symptoms:
[1] Excessive Daytime Sleepiness (EDS) includes daytime sleep attacks, which may occur with or without warning (and for many are irresistible); persistent drowsiness, which may continue for prolonged periods of time; and "microsleeps", or fleeting moments of sleep intruding into the waking state.
[2] Cataplexy (the other hallmark symptom of narcolepsy) is a sudden loss of voluntary muscle control, usually triggered by emotions such as laughter, surprise, fear or anger. It occurs more frequently during times of stress or fatigue. The cataplectic attack may involve only a slight feeling of weakness and limp muscles (such as sagging facial muscles, a nodding head, buckling knees, loss of arm strength, 'garbled’ speech); but it may also result in immediate total body collapse, during which the person may appear unconscious, but remains awake and alert. These attacks may last from a few seconds up to thirty minutes.
The two other symptoms are [3] hypnagogic hallucinations - vivid, realistic, often frightening dreams; and [4] sleep paralysis, or a temporary inability to move. Either one of these can occur during the process of going to sleep or waking up, while the brain is partially asleep and partially awake.

3. QUESTION: Are there other symptoms?
ANSWER: The following secondary or auxiliary symptoms may appear:
[1] Automatic behavior, the performance of a routine task, without conscious awareness of doing it, and often without later memory of it;
[2] Disrupted nighttime sleep, involving multiple arousals.
Other difficulties may be caused by the primary symptoms, appear as side effects of medication, or result from one's continuing struggle to cope. Feelings of intense fatigue and continual lack of energy are often reported, and depression is also common. The ability to concentrate and memorize may become more difficult. Vision (focusing) problems, eating 'binges', weak limbs, and difficulties in handling alcohol may also occur.

4. QUESTION: How are these symptoms all related to narcolepsy?
ANSWER: Narcolepsy is related to REM (rapid eye movement) sleep, the dreaming portion of sleep. As a protection against acting out dreams, the muscles become immobile or "paralyzed”. For the normal person, a sleep period first progresses for about 90 minutes of non-REM sleep and then REM sleep begins. But for a person with narcolepsy, sleep begins almost immediately with REM sleep. Since the brain may not be totally asleep when dreaming begins, the dream is sometimes experienced far more vividly and is thought of as a hallucination. After waking, REM periods, or fragments of REM, occur inappropriately throughout the day. This explains excessive daytime sleepiness. Cataplexy is related to the muscle "paralysis" of REM. When automatic behavior occurs, sleep has partially overtaken the brain, but the body continues to perform familiar tasks.

5. QUESTION: Is narcolepsy a psychological or mental disorder?
ANSWER: Narcolepsy is a neurological disorder. Medical researchers have recently identified the cause as the absence of a neurotransmitter, normally present in the hypothalamus region of the brain, which produces the hypocretin peptide essential to the human sleep-wake cycle. Nevertheless, psychological problems can develop from misunderstanding of and difficulty in coping with the symptoms. A very difficult fact to understand for one with narcolepsy and those around him or her, is that sleepiness and sleep attacks are uncontrollable. Failure to accept this may seriously influence self-esteem or personal relationships. Health care counseling for persons and families with narcolepsy can help alleviate these secondary problems. Educating the public, especially school, health, and human resource personnel can help lessen or prevent many other problems.

6. QUESTION: Does narcolepsy affect learning?
ANSWER: Although narcolepsy does not directly affect one's intelligence, learning and education cannot help but be affected by the symptoms. Study, concentration, memory, and attention span may be periodically impaired by sleep. Children with narcolepsy should be identified at the earliest possible age to avoid lowered self-esteem and a pattern of failure adjustments in learning habits may be continually necessary. This can be accomplished with the cooperation of school personnel.

7. QUESTION: Is cataplexy dangerous?
ANSWER: Mild cataplexy, while perhaps embarrassing, is not dangerous. One can often find support for weakened head, neck, or arm muscles, so that others may not even be aware of the momentary loss of control. However, severe cataplexy, resulting in immediate and sudden body collapse, can be dangerous. Companions should be told in advance what to expect and how to help. They should always check for the person's safety and comfort immediately relieving any unnatural bending of limbs or unusual body positions, assuring complete relaxation, and then allowing him or her to recover spontaneously. Cataplexy for others can be so instantaneous that there is no time to prepare for safety and serious injury can occur. Some deaths and near-deaths have been reported. Obviously, potentially life-threatening situations should be avoided unless cataplexy is controlled.

8. QUESTION: How is a diagnosis of narcolepsy determined?
ANSWER: Excessive daytime sleepiness (EDS) is often the first symptom to appear, and for some, the ONLY symptom of narcolepsy. However, it is also a symptom of various other medical conditions. Cataplexy, on the other hand, is almost unique to narcolepsy. The combination of EDS and cataplexy allow clinical diagnosis of narcolepsy, but the presence of cataplexy is not required for a diagnosis of narcolepsy.
In most cases, laboratory tests are still needed to confirm diagnosis and determine a treatment plan. The usual procedure includes an overnight polysomnogram (PSG) at a sleep disorders center to determine the presence of EDS and perhaps other underlying causes of this symptom. This is followed by the Multiple Sleep Latency Test (MSLT) which measures sleep onset and how quickly REM sleep occurs. The MSLT is the most widely accepted diagnostic test for narcolepsy.
Finally, a genetic blood test has been developed which measures certain antigens often found in people who have a predisposition to narcolepsy. Positive results suggest but do not prove narcolepsy. This test is sometimes used when the diagnosis is in question.

9. QUESTION: How is narcolepsy treated?
ANSWER: The goal is to increase daytime alertness and to lessen recurring cataplexy, using minimal medication. Excessive Daytime Sleepiness (EDS) and cataplexy are treated separately. Traditionally, central nervous system stimulants (e.g. Ritalin, Dexedrine) have been used for EDS. In 1999, Provigil (modafinil) was approved as the first non-amphetamine wake-promoting drug for EDS. Tricyclic antidepressants and serotonin reuptake inhibitors (e.g. Vivactil, Tofranil) have been used for cataplexy and REM symptoms. A new drug, Xyrem (gammahydroxybutyrate) is being studied in FDA clinical trials.* Preliminary results suggest it is both safe and effective for these symptoms.
In addition to drug therapy, 2 or 3 short naps during the day help to control sleepiness and maintain alertness. Proper diet and regular exercise also help. And some report benefits from alternative remedies, such as herbs, phosphates, and acupuncture.
Continuing doctor-patient communication is necessary. Equally important is educating one’s family, friends, teachers, and co-workers about narcolepsy. Joining a support group is recommended.

14 Comments:

Blogger The EYE said...

being healthy is the key, and getting this under control will be one more large step to being healthy. lack of sleep certainly isnt. glad to hear the doc is finally listening. hope this works out.

6:09 AM, September 12, 2006  
Blogger Gasolina said...

Hey Sean: Sleep disorders are serious stuff, but there is a lot of research and help is available. My neighborhood boasts one of the best sleep disorders diagnostic facilities in Canada. Perhaps they could help you find resources in your own area, or point you to information relevant to your case. http://www.rohcg.on.ca/roh-internet/webpage.cfm?site_id=1&org_id=1&morg_id=0&gsec_id=197&parent_item_id=201&item_id=356
In my dealings with the medical system, persistance pays off. If you know in your gut that there's something neurological going on with you, there probably is. Writing gets better results than calling (paper trail). Get to know your health insurance policy, sometimes surprising things are covered (they have a vested interest in you getting better). You seem to be getting a little daunted lately, and that's understandable. I also see an underlying determination in you to take control of your life and your health, and that's going to pay off in the long run. Some day, you'll look back and wonder what all the fuss was about.

6:09 AM, September 12, 2006  
Anonymous Anonymous said...

Hey Sean,
SOOOO glad you're back! Keep up the posting. Your fan club needs their daily dose ;-)
Shannon

6:31 AM, September 12, 2006  
Anonymous D said...

Bro- a couple of things...


I don't know if you know, but my mom actually does some work with sleep disorders, or did. She would get paid to interpret the data from when people would come into a sleep clinic and spend a night linked up to the monitors. If you were able to get your medical company to authorize a sleep study, which it sounds like would be in order, I'm sure that she would be more than willing to look over the data and make sure they are not missing anything. I'll ask if you want.

and also,
there is a teacher at my school who suffers from narcolepsy. people down her a lot, cause she falls asleep in class some times, or has in the past. its really not a cool situation, as she really is a nice person who tries to get along with people, but a lot of folks don't give her a chance because they have made a judgement about her based on their hearing that she falls asleep in class. I'm gonna try sharing some of this info on narcolepsy with these prejudiced folks and see if they can question their judgements.

I know she has been dealing with various medications to help with this. I will ask her about what the deal is and maybe tell her to check this blog, or let you know what her experience has been.

stay in the game. You have inspired me to go to the gym again tomorrow. Arggghh!

D

11:16 PM, September 12, 2006  
Blogger dietpills seccond said...

That's good to know. It'll require some thought though. And here is my site, you can check it. http://virility.kagai.net/

3:48 AM, September 13, 2006  
Blogger Sean Perkey said...

the EYE: Thanks man! I think I'm on the right track now!

gasolina: Thanks for the URL I'll check it out.
Fortunately I work for my health care organization so I totally agree with what you're saying about persistance! I know that I have to talk with anyone who will listen then have them all talk with eachother until the message gets across. I think I have a good team on this one though so as Long as I keep on them I should be ok. Thanks for your encouragement and advice! I really aoppreciate your insight!

Shannon! Yep I'm back! Thanks I will...make surfe you keep coming back! :0)

Hey D: You know...I'd be curious to know what your mother's thoughts on Narcolepsy were. I think that my healthcare provider can handle the testing and data but I'm always up for extra info on the subject. And, yeah, let that teacher know about my blog and let her know that I'd love to hear her thoughts on her experiences. It's all very interesting to me...and it explains a lot. Thanks for looking out for me bro! Talk with you soon! and Say Hi to your mother for me!

dietpills seccond: hey there! Spam Much?

2:42 AM, September 14, 2006  
Blogger Scrapnqueen said...

Hey, Sean, just catching up on what I've been missing. Yikes! Narcolepsy! That would explain a lot. I bet it's good to even know what's been going on! While sleep disorders make good comedic material in shows such as "Rat Race," I know how serious they are in actuality. Even my father-in-law, who suffers from sleep apnea, I feel sorry for him. At least he doesn't have something this serious--good thing, since he drives truck for a living!

Anyway, I'll be sending positive thoughts and prayers your way as you work through this not-so-new development. Hopefully, just understanding will help alleviate some of the issues. Guess I'll see as I read some of your more recent posts, here!

10:48 PM, September 17, 2006  
Anonymous Mary Ellen said...

Sean,

this is actually your brother's mother posting here. It sounds to me like you have sleep apnea, and you need to go to the sleep lab and have a sleep study done. If that's what it is, it is easily treated and could save your life (D tells me like that time in the sushi place, only actually for real). There is a treatment called CPAP that keeps your airway open while you are sleeping and allows you to get into deeper sleep so you are not tired all the time. I strongly recommend it.

10:24 PM, September 18, 2006  
Blogger Sean Perkey said...

Hey Mary Ellen:

Thanks for the suggestion but I've already been diagnosed with Sleep apnea and I have a Bi-pap unit that works for me sometimes. The problem now is that I haven't slept for more than 2 to 3 hours a night for the past 3 months and even before that I've been having sleep attacks during the day and instances of catatonic episodes where I lose all muscle control and slump over for a minute or two until I can force myself to move again.

I am in the process of getting my bipap adjusted so that It doesn't dry me out so much but like I said even when I've been sleeping well I have the day time sleep attacks so I'm waiting for a referral of a consult with a physciatrist so that they can get me the test for narcolepsy. Then maybe I can drive long enough to visit D without fear that I might fall a sleep and wreck my car on the way there.

Thanks for the information though! It was nice to hear from you and I hope you're doing well!

3:45 AM, September 20, 2006  
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