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Message board for narcoleptics, friends and family. Ask/answer questions...or just get it off your chest.

clock neurons

by James (no login)

News tips from the Journal of Neuroscience
1. PDF Differentially Affects Groups of Clock Neurons
Taishi Yoshii, Corinna Wülbeck, Hana Sehadova, Shobi Veleri, Dominik Bichler, Ralf Stanewsky, and Charlotte Helfrich-Förster

The ~150 clock neurons in Drosophila brain are classified into seven groups based on position, size, protein expression, and function. Some of these groups primarily drive morning activity, whereas others drive evening activity. Interactions among these groups are required to maintain rhythmic activity patterns and molecular oscillations, but these interactions are poorly understood. The neuropeptide pigment-dispersing factor (PDF), which is expressed in the cells that drive morning peak activity, has been proposed to couple the oscillations of different clock neurons. PDF lengthens the period of some neurons, and shortens the period of others. Yoshii et al. have now identified the specific functional groups accelerated and decelerated by PDF. These differential effects of PDF may help adjust circadian activity patterns to seasonal changes in day length. As days lengthen, the morning activity peak in normal flies is accelerated, and the evening peak is delayed. This effect was abolished in PDF-null flies.



Posted on Feb 24, 2009, 6:06 PM

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Re: clock neurons

by (Login patlittlejohn)
Moderators

way interesting. i might be reading too much into this.

Posted on Feb 24, 2009, 7:03 PM

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Bulldawg

by (no login)

Just have to say thanks again! My pkg arrived today. I'll take a picture and try to send it to you this weekend. Just what I was looking for.
GEM

Posted on Feb 19, 2009, 8:05 PM

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Glad to help

by GEM (no login)

Let me know if I can do anymore

Posted on Feb 24, 2009, 9:20 AM

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My dog is alive!!!!!!

by (no login)

He came home after being gone a week. I think he's got a girlfriend up the road or something. He's the one who sired the 15 puppy litter last year. So my neighbors up the road may come gunning for him if their dog has a 15 puppy litter! I'm so relieved to know he's OK. ....For now!

Posted on Feb 19, 2009, 4:26 PM

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LOL welcome home Romeo

by (Login patlittlejohn)
Moderators

Vickie, thank you for letting us know that, dayam they become precious when our world tightens up so much.

um, Romeo, kind of an over-achiever arent you??


you best get him some kind of covered pen, dog house or run, before he meets a bigger badder animal than him.


yippeeee!

Posted on Feb 19, 2009, 5:19 PM

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or

by phil (no login)

a pack of dog came through, killed whoever, your dog ran scared but came back.

packs of dogs are like packs of wolfs,kill kill kill

livestock, dogs not in their pack, anybody they can

every body should keep their dog on their own property

so they do not run in packs

Posted on Feb 21, 2009, 1:37 AM

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Awesome

by (no login)

Thats awesome he came back. Today is my dogs 1yr Birthday lol. He is now 90lbs and still sleeping in the bed with us lol. God he is so spoiled. I woke up this weekend with him nudging my arm trying to wake me up so I could rub on him. Spoiled?

Posted on Feb 23, 2009, 4:34 PM

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My dog is lucky to be alive

by (no login)

If he hadn't been out on a "date" that night, he'd be dead, too. It was the coyotes. I'm sure of it. There are just so many of them, one or two dogs can't fight them off. They've attacked other dogs in my yard in the past. They killed "Kracker", another one of my neighbor's dogs. And hurt "Becky", too. The two of them couldn't fight them off either. That attack was so vicious they even left some of their teeth in "Kracker". And now they've killed "Leah". What I'm wondering is why they always launch these attacks in MY yard! If "Little Boy" had been there, he would have tried to get them off his buddy, "Leah". He's crazy about her. But she had been "fixed", so he took his "romantic" urges on the road. "Leah" and "Little Boy" were "just friends". They spent a lot of time together. Now he keeps looking for her. It's sad.

Posted on Feb 24, 2009, 6:41 PM

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Re: My dog is lucky to be alive

by (Login patlittlejohn)
Moderators

ummm, concertina wire comes to mind!

scary, Honey, i'm so sorry.

Posted on Feb 24, 2009, 7:01 PM

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fish and game

by phil (no login)

maybe you should talk to the local news and fish and game

make sure your outside dogs have a hole to hide in

Posted on Feb 24, 2009, 11:06 PM

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Blown away

by Bulldawg (no login)

Wow!! Really found out who my friends at work were today. If the Drs want to know why we become antisocial, I think I can make it a short study.

Posted on Feb 19, 2009, 2:44 PM

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oh noooo

by (Login patlittlejohn)
Moderators

Hey Dawg, that's just a crushing blow. im so sorry. this really has been steadily downhill, im just sorry.

Posted on Feb 19, 2009, 3:11 PM

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I Feel You Dawg

by (no login)

I feel you man. My company just cut from the top down wich ended up in a pay raise for me wich is cool but Its been a long long long month. Wich is why I havent been on in awhile these long hours are killin me. Dude Ive become so distant from most of the guys at my job. I get to work at 5:30am and Im always drowsy and quit in the morning and I get so freakin tired of the guys commenting on it, or when I just have one of my days and I get the oh there is always something wrong with you comments. Im not one to complain but I just get sick of that crap. So I really dont talk to many people anymore. I just dont want to hear it.

Posted on Feb 23, 2009, 4:30 PM

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Finally dropping in!

by (no login)

I hope all you sleepy sweethearts had a Happy Valentine's Day. Sorry I haven't kept in touch. I've been busy. Ain't life just a barrel of laughs? I woke up yesterday morning and started to walk my dog before I started getting ready for church. And when I opened the front door, I almost had a heart attack-LITERALLY! My whole porch and everything on it was covered with blood and guts- real guts, not just a figure of speech! I had no idea where it came from. A person? An animal? My first thought was "Oh, no, please not my son!" I thought Kyle might have come home in the middle of the night as he often does,and when he got out of the car, somebody might have attacked him, and he made it to the door to try to get in. I panicked and started running around the house. There was blood in the yard, too. I followed the trail to what was left of my neighbor,s German Shepard. We don't know what happened to her, but it was horrible. Some think she was hit by a car. I'm afraid the coyotes got hold of her. They've been very active lately. And my yard dog has been missing for 5 days. He's half Beagle and half Black Lab. I'm worried he might have met with a similar fate. Well, now that I've cheered ya'll up, I'm going to go look for my dog.

Posted on Feb 16, 2009, 5:41 PM

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Just dropping in.

by (no login)

So sorry you can't find your dog. When I had a dog, (beagle) it got away and fortunatly we found it. Hopefully you will find him in good health too. 2 of our beagles got away and cars and traffic was my problem and they did get hit by a car. Vet bills through the roof but it was worth it. Hope he's ok.

Posted on Feb 17, 2009, 5:23 AM

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vickie and juju

by (Login patlittlejohn)
Moderators

geeeeeeeeeeemineeeeeeee! that will give me a heart attack, too!

im so sorry there have been such dangers to the neighborhood dogs, i do hope you find yours, Vickie.

around here we just have some big birds like hawks and owls that might leave with a lil' weenie dog, so when he goes out at night he is clipped to a rope. that should make any big bird let go, just from surprise.

out in Florence, where my inlaws moved, they have desert right outside their wall. cats dont make it long unless they are tough and smart.

the coyotes can be seen there, less than a "block" away.



take good care, Vickie and Juju, dont wait so long to check in, as we can be "nervous" types around here.


God bless, so glad you chimed in.


pat

Posted on Feb 17, 2009, 12:53 PM

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Hi, sleepy pals!

by (no login)

I still haven't found my dog. I'm still looking, though. I want to find him... dead or alive. So I will at least know for sure. There are so many coyotes around here the cattle farmers all have to keep donkeys in their pastures to keep them off the cows. And I don't dare let my cats outside-EVER. (Even though one of my cats is the DEVIL!) I only take my little house dog out on a leash. I can't take any chances. My yard dog is strictly an outside dweller. He refuses to come in even to eat!
Pat, I forwarded an e-mail to you from my daughter's e-mail address, so it might go to junk mail. If it does, go in there and look at it. It's so funny.

Posted on Feb 18, 2009, 12:13 PM

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resend please`

by (Login patlittlejohn)
Moderators

sorry Vickie, i even dumped my valentine this year! rats!


i will keep an eye open for it.

thanks!

Posted on Feb 18, 2009, 4:50 PM

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feeling better and a medical theory LONG post.

by Scarlet (no login)

It's been 3 days since my last visit to the ER with no explanations of what happened whatsoever. I felt as if I was on the brink of death. Happily today I woke up feeling much better than I have in a week. The abilitiy to rest and sleep as needed and stopping all medication ( except levoxyl) has helped tremendously.

My theory as to what happened to me goes as follows:

Xyrem finally gave me the rest I needed so my body was able to utilize energies more efficiently.As a result I was able to lower my dose of ritalin. As a result of being much more active my body began to require more thyroid hormone and because I don't have one and am reliant on medication my body was unable to recoup thereby shutting down and requiring me to sleep more in an effort to consolidate what energy I had left. Then I continued with the xyrem which further reduced my respiratory drive ( very common in hypo patients) causing my mild UARS to increase to that of severe apneaic episodes further stressing my body.

As a result it further depleted my thyroid hormone because it caused me to use further energy that medically I did not have. I upped the ritalin per the neuro which stressed my body even further basically causing a shut down of unnessecary functions and completely stressing my heart. My first trip to the ER having not had any xyrem or ritalin my FT4 ( primary thyroid hormone) increase 5 tenths of a point( from 0.57 to 0.62) on my second trip to the ER my thyroid hormone practically tripled to 1.76 ( completely normal range). I do believe as my primary does it was causing seizure activity ( complex partial seizures) which created further weakness.

To shorten this up my body basically was shutting down to being undermedicated for thyroid and over medicated for N.

I realize this post is long and many may not be able to understand it but I needed to put this in writing since my brain is functioning this morning and I don't want to forget anything.

Posted on Feb 15, 2009, 4:43 AM

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Re: feeling better

by (Login patlittlejohn)
Moderators

Scarlet,

it really encourages me to see your clear-thinking and conclusive wrap up: you must feel a huge improvement. that was scary, Honey.


the balance and conflict of health issues/medications is a real hazard for you, especially as one medication does the job and you feel better, then other symptoms improve; you must guess at "maintenance" levels of your other meds so other conditions dont flare up.

i dont know how you do it, but keep doing it! good detective work.


for the record i just slept 2 nights in a row for more than 2 hours, first time trying generic tylenol pm's. since the Stand Down event in Phoenix, C was kicking my b**t day after day and i was waking up after only 1 or 2 hours.

Jim takes tylenol pm to sleep (the narcotics scrips from VA were robbing him of any daytime quality of life) and he got me to try some. i feel a little drowsy in 1/2 hour and stay asleep when that first short sleep cycle is over.


in case someone else might get as good a result, just wanted to let yall know.



    
This message has been edited by patlittlejohn on Feb 15, 2009 5:56 AM

Posted on Feb 15, 2009, 5:56 AM

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Congrats pat!

by Scarlet (no login)

My husband recently began trying advil pm with great success. I'm thinking of ditching the xyrem for now and going back natural like tryptophan or 5htp which is what my chiro recommended.Congrats Pat on finding something to help. Any time we find something small to relieve any sort of symptom it truly is a joyous occasion!


I went to a natra path . Not a doctor but someone who traveled a parallel level in her own medical history and she was great. She hooked me up to some machine that measures energy levels in the body. The conclusion she came to was something in the central nervous system is blocking the energy channels as well as adrenal and thyroid. She also thru further pressure point testing concludes I have some sort of parasite affecting the small intestine and lungs. Could it be the lyme I was treated for last summer 2x was not iradicated? Hmmmmmmmmm more onion layers I guess!! I begin this week with some natural meds and tinctures, small strides forward are much better than backwards.




Posted on Feb 15, 2009, 1:36 PM

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Lyme leftovers

by (Login patlittlejohn)
Moderators

i would definitely investigate to make sure you have not resisted the two treatments for lyme disease. not at all sure if vestiges might be in those parts of your system.

please keep us posted.

Posted on Feb 15, 2009, 6:21 PM

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re: Scarlet

by (no login)

I can't take most drugs and take Tylonol PM and it works to help w/ sleep. My Neuro also gave me Nortripyyline, this also helps but is not as long lasting... Charlie

Posted on Feb 17, 2009, 7:06 AM

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Forgive me, Pam

by (no login)

Can I use my dwindling memory as an excuse here? I hope so 'cause it's the only one I got.. lol. I uploaded your picture of your beautiful quilt.. went to click on the program to add it and somewhere between those two things.. I lost my mind.. lol. Forgive me please.. it's there now.



    
This message has been edited by cataplexic on Feb 14, 2009 12:35 PM

Posted on Feb 14, 2009, 12:34 PM

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Prize Winning Quilts

by (Login patlittlejohn)
Moderators

You are very accomplished, Pam, and they are just beautiful... i dont know how you can do it, nowadays.

thank you for showing, now for the telling!~

Posted on Feb 14, 2009, 4:20 PM

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quilt

by (no login)

thanks for the compliment. Quilting is my favorite hobbie and it does give me a sense of accomplishment, since this disorder takes away so much from me. A really special thanks to my husband Bob, who rips out all my mistakes, darn that AB. He is always checking my work for those mistakes, and there is plenty. I enjoy the hand applique, which is the quilt that Melody posted, it is also hand quilted.

Posted on Feb 14, 2009, 4:51 PM

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Anyone else have this?

by (no login)

Yesterday marked another day of rain, and another horrible migraine. The scary thing is, my migraines seem to turn into depression and anxiety... like, scary depression. We realized that the depression was actually part of my migraine cycle last summer when I went to the ER with severely scary suicidal thoughts (that I thought I might lose control of, it's so embarassing to write about and I'm sorry) but after the first ER sent me home with no help whatsoever, we went to another hospital because my head was KILLING me, it had never been so bad EVER. And the doc there and my mother and husband realized what was happening, drugged me and let me sleep for two full days.

Ever since, we have like literally been able to see the migraines change into this emotional issue. (We know it was always like that, but it's obvious now)Then I exhaust myself and sleep through the worst of the pain...usually. I have some really strong meds the doc from there prescribed for these migraines...that come with rain and snow and other pressure changes it never helps at all except to help make me sleep. It also comes when I have ignored or been forced to ignore my need to sleep for way too long. These episodes really stress my husband out... once, I had my sleepwalking type episode when I was still emotionally disturbed and he was really scared because I kept trying to ...you know. I wasn't aware of a thing and didn't even remember. I could have hurt him in the process and that really is just....

Anyway, this is hard to share... embarassing, scary and I don't like to think about it... but I really would like to know if anyone else has this problem, has heard about it and knows of ways to fix it! lol I'm already on Lexapro. I'm not usually depressed or anything at all, just during the peak of the migraines. And by then I'm just not myself, the pain is just so bad, I have cataplexy attacks all the time, I have my other episodes its awful. What to do, what to do?

Posted on Feb 13, 2009, 10:30 AM

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Migraine and terrors

by (Login patlittlejohn)
Moderators



ok Honey, lets start with damage control "in case" --

first thing, discuss with your primary doc having a record standing with the ER that was understanding and effective. have him speak to the ER admin there, saying that you have an ongoing acute emergency with these attacks, and that if you come in he is to be called, or whatever, and how you are to be treated for them.

point is, you are under his care, and this is life-threatening and ongoing, NOT an isolated incident. furthermore, it is NOT to be addressed by current procedure standards, or discretion of any staff, as psychiatric or "wait and see". procedures need to be in place immediately. this will cut out dangerous observation and discussion time.


second, get a referral or seek out a psychiatrist now, being sure they treat chronic disorder patients already. the words chronic disorder are important to use, because there is a whole field of related study on disease that has no cure, or which has already gone on a long time. the collateral effect on family (God bless your husband and mother, i mean it) is a contributing factor, and you need to start with a psychiatrist that understands and looks for it.

that psychiatrist needs to be totally supportive, and not still in the "wait and see" b.s. mode, then make sure he (she) is on your file at the ER, with his instructions and diagnosis. that psychiatrist needs to form a professional assessment of your non-depressed, not-suicidal norm, and then stand on it when you are bewilderingly self destructive.

set up a safe place for the unforeseen, explosive migraines, and particularly FEEL like there is a plan. this should lighten the anxiety and fear that always escalate what happens. you need to know now and when the pain and depression are happening, that you are provided for.


then pursue the physical and psychiatric puzzle solving, and go through the time-consuming processes with the knowledge that you dont walk the edge every day.


i know that was very hard to talk about, i have been suicidal in the middle of painful disoriented HH, automatic zombie behavior, severe sleep deficit and cataplexy with pain and seizure. i know i may be again, and it frightens and humiliates me, too.


God bless, email me anytime too.

pat

Posted on Feb 13, 2009, 12:09 PM

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herniated discs?

by (no login)

Lindsay I comepletely understand what you are going through with the headaches. I had them for a long time.It wasn't until my new primary thought it had something to do with spasms in my neck. On MRI it was found that I had 2 herniated discs that were pinching the nerve sac. I had basically walked around for 2 years with this because my N symptoms and thyroid disorder masked it, my health is like an onion there are sooooooooo many layers and yes occasional I smell like an onion too....LOL

Once I began cervical decrompression therapy with a highly trained chiropractor ( highly trained is the key it had to be someone who was trained in cervical issues so NO neck cracking!) my headaches reduced to an occasional discomfort.It's been 3months ( i think - i can't keep track of time) since I have had one of those excrutiating painful headaches. I described them to the neuro as having 1000 bands around my head and if anyone touched me my brains would explode all over the place!

In general migraines cause the vessels to dialate which impairs blood flow to the brain and anything can make it worse.I used to get stressed over the headache so I'd go have a cigarette further constricting blood flow, it was a vicious cycle. An anti inflammatory and COMPLETE rest is the only thing that will help until they find the real cause.

I hope this helps - remember the emotion arises from fear of the unknowingness of what is happening in your body, you know something is wrong but WHAT is it? You are NOT nuts. Also please please please research your medications sometimes the pharmacy may have missed an interaction.


Posted on Feb 15, 2009, 4:59 AM

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Yes!

by (Login patlittlejohn)
Moderators

Thank you, Scarlet.


Linsay, please keep us posted here, when you can.


God bless you.

Posted on Feb 15, 2009, 6:00 AM

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has anyone heard from Vickie?

by (Login patlittlejohn)
Moderators

Honey, i sure hope you are alright and you can get online soon.

send me an email or pop in here, and let us know. i miss you.

Posted on Feb 13, 2009, 2:29 AM

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Could I be narcoleptic?

by Nicole (no login)

Hi my name is Nicole and I'm 18 years old. I'm a senior, but my grades arent what they used to be due to me sleeping every day in every class. No matter how much sleep i get, how much caffiene I drink, how hard I try to stay awake... i try so hard I can't see straight. I see double and everything is blurred. If i don't put my head down, it smacks the desk when it falls. Just today i fell asleep in drama. during a play. while i was acting out a schene. ive also fallen asleep doing a push up in gym class. I can stay up all night sometimes and not fall asleep in school but most of the time ill be falling asleep no matter how much i get. I am extremely mean and difficult to wake up and i dont wake up on my own. I've slept for over 24 hours just because noone woke me up till than. alarm clocks dont wake me up, or loud TVS, or anything really. my poor mom has to spend a long time getting me up every day. In classes i've fallen asleep and slept thru the bell ringing and found myself alone in the classroom because the teacher didnt bother to get me out. Could i be narcoleptic? I dont have any other symptoms

Posted on Feb 11, 2009, 5:37 PM

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re: Could I be narcoleptic?

by (no login)

Nicole

your symptoms sound so very typical for narcolepsy. My symptoms started when I was about 17. The best advise I have for you is have your primary care doc set you up for a sleep study. This will include a night time sleep test, called a polysomnogram and a day time sleep test called an MSLT (multiple sleep latency test) which is a series of 4-5 naps taken at two hour intervals. I know that day time sleepiness (EDS) was my only symptom for years before other symptoms developed. There are stimulant medications available to help keep you awake during the day. It is important to get a diagnosis early, before depression or other social situations, school and activities suffer. It isn't laziness or lack of interest in school that is your problem. Seriously talk to your parents and get your doctor to order tests now! Your future will depend on it. Good luck and know that this board is here for your support.

Posted on Feb 12, 2009, 5:36 AM

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Narc

by Bulldawg (no login)

You need to start keeping a journal every day. Write down everything that happens; when you go to sleep, how long you slept, what you eat, drink, etc. Make an appointment with a good dr who does sleep disorders. Feel free to ask any question you want to the forum. Most importantly YOU ARE NOT ALONE.

Posted on Feb 12, 2009, 6:00 AM

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Re: Could I be narcoleptic?

by (Login patlittlejohn)
Moderators


Dear Nicole,

I want to emphasize some things Pam and Dawg said: getting this sorted out early could save you years of trouble that is needless, like frustration and slow progress in school and work, relationship "fatigue" and failure, car accidents that don't need to happen, etc.

once other losses happen, we are less able to cope than others, and getting diagnosed with clinical depressive disorders can confuse everything.

when you go looking for a primary care doc, or someone to ask for referral to see specialists, please be sure to do some checking: you do not have time to waste on a doctor who does not treat sleep disorders yet. this could be a GP who has patients with sleep disorders, but who refers and coordinates their care with sleep specialists, neuro's, etc. *(often a sleep specialist will not do primary care)*

I recommend the journal, but don't think it has to be a big book on the bedside table: if it is small enough to carry with you, it can include EVERYTHING, like phone calls (dates, times, person you speak to, instructions), deadlines, appointments and what was said. what you eat and where you are may be more important than you think ( meals/fast food/ additives; fluorescent lights that flicker, humming, something in classrooms that triggers knocking out?) and having that book with you is vital.

keep the notebooks over time, years from now you will have your own notes-at-the-time from some moment of examination, testing or diagnosis, or exchanges with docs' offices or insurance. these notes are surprisingly valid and binding, in standing up to insurers etc. I have used them in court.

Pam also described the sleep testing perfectly, but I want to add that the medical standard (and therefore the requirement of many health insurers) is the MSLT daytime nap test must be run the morning (day) after the overnight test. if appointments are set up for both tests, it is sometimes up to YOU to know that and make sure; later, insurance may not cover medication, and may not pay for the repeat testing in spite of their own error.

I want to extend to you a welcome and our (my) regrets at your trouble. please ask anything, and if you feel like posting your experience and feelings, don't worry about sounding muzzy... we have all been there.

these are GREAT people, so much wisdom and heart. email me anytime, I believe you can click my name for that, or send to littlejohnquilt at msn dot com.

after this I will post a definition page we have all worked on, print it out if there is even a chance it will help to inform someone. (it has the advantage of not being from any web page, you may find resistance to informing yourself *!!*, being an "internet medical degree" holder). having it written will supplement your own personal experience and understanding, and helps when someone is challenging you.


ah well, more about that later. take good care, and God bless you.


pat


btw. also want to add that I was into years of pointless testing and misdirected care before a friend online SAW me narc out on cam, and knew what it was. I believe in this medium so strongly, in a world where we are largely undiagnosed, misunderstood, badly judged, and not profitable enough to get improved care.


one reason you do not seem to have other symptoms is you may be skilled at hiding and compensating after a lifetime of being "coached" in normal expectation; you may not have them yet, either because of age, hormonal phase, or the effects of other stressors YET.

stand your ground, not being a full blown set of symptoms may be the best reason for early dx and treatment.

Posted on Feb 12, 2009, 10:31 AM

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other N symptoms

by (no login)

Pat

you bring up a very good point. For years I always thought that I only had EDS, no other symptoms. I thought it was some twenty years later that I developed cataplexy. Yes, we do inadvertantly convince ourselves that we are normal. I was talking to a high school friend the other day, whom I hadn't talked to in years, and she brought up some of our antics that we did our senior year in high school. She spent the night one weekend and we sneaked out of the house about 1 am, I'll leave some of this blank, then upon our return home we had to climb and jump over a six foot cyclone fence. Well my friend jumped down on a broken pop bottle, back when pop came in glass containers, and cut her foot. The glass went right through her tennis shoe and she had about a 1 inch gash to her instep. We ran home to my house, the lights were on, I thought we were caught, so went in the front door. My younger brother was sitting there rolling newspapers to deliver on his bike. We started laughing so hard, she mentioned the fact that I fell to the floor like a rag doll. To this day I didn't remember that happening. I guess I had a cataplexy attack back then. My brother was half asleep himself and didn't remember us coming in the house. I got some nylon thread and an upolstery curved needle and was going to stitch it up for her, but our better judgement kick in and we had to make up one of those little white lies to my mom the next morning about her foot. The next day was my birthday and we were going ice skating, but that kinda of put the cabaush on that and she had to call her mom to come get her and have a real doc suture her foot. I've never told my mom the real story to this day! Any way sorry about making a short story long.

Posted on Feb 12, 2009, 12:09 PM

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Re: other N symptoms

by (Login patlittlejohn)
Moderators

LOL, that was funny "leaving this part blank".

i remember now several C attacks during my young life, once in the 6th grade our field trip took us to a NASA tracking station. in the little dark, vibrating control room, stuffed in with the whole class, i fell hard.

i "redded" out late one night while arguing with some dumb boys, in my teens, and slid off my chair totally awake several times in college.

i know i used to wake up alone in parks that i had to cut through on my way home, and in public bathrooms.

as an adult i sang in a choir for our choir director's funeral. as the sound swelled around me (so loud) and we all cried, i just pitched backward into the pew and could not move.

so many mystifying events, plus i really worked at being awake on time day after day. i always HATED to be thought of as lazy.

Posted on Feb 12, 2009, 8:47 PM

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Please fill in the blank spot after 1 am

by Bulldawg (no login)



Posted on Feb 13, 2009, 6:56 AM

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Fill in the blank spot -

by (no login)

I was diagnosed in 67. I noticed no symptoms prior to the 6 months of finding out what was wrong.
I only had one experience prior to that, that left me wondering what happened. In 1960 or 1961
I was in the USCG, stationed at Alameda, CA. I spent an evening with a friend, we had a few drinks
(two or three) We ended up at a bowling alley in Alameda. We stayed until 3:00 am playing pin ball
machines. My friend had duty the next day, so I took him back to the base. I took off for my parents
house in Marin County. I headed North up hwy 40 (now I 80) I turned off at Richmond and headed for
the Richmond-San Rafael Bridge. The last thing I remembered was the Race Track where I turned off of
hwy 40, and the next thing I knew, I was turning onto hwy 101 in San Rafael. Apparently I stopped at
the toll gate paid my toll and drove 25 miles without any knowledge. That bothered me for years,
but I presume it was a precursor of the "good things to come".

Posted on Feb 13, 2009, 10:16 AM

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re: fill in the blank spot

by (no login)

I think I'll leave that up to your imagination, I wouldn't want to influence some of the younger ones on the board. Remember this was the early sixties, how bad could we have been?

Posted on Feb 14, 2009, 7:59 AM

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Definition Page

by (Login patlittlejohn)
Moderators



Narcolepsy:
A chronic neurological wake/sleep disorder caused by the brain’s inability to regulate (control) “normal” sleep-wake cycles.

Considered to be a disorder of the normal boundaries between the states of sleeping and waking, narcolepsy is technically defined by excessive daytime sleepiness and sleep attacks, in conjunction with one or more auxiliary symptoms, which can include cataplexy, hallucination, and sleep paralysis.
The line between being asleep and awake can be blurred. Signs and symptoms may vary in severity but never truly go away.
The quality of life impact of narcolepsy is profound, struggling to complete activities of daily living: in one study, the impact was rated greater than living with Parkinson's disease.

Cataplexy:
An unexpected loss of power in controlling your body, specifically the loss of muscle control, almost exclusive to narcolepsy. Sudden weakness caused by anger, excitement or amusement. Temporary paralysis of the muscles controlling posture and body movement.
Cataplexy involves regional muscle groups and may result in symptoms such as a drooping head, sagging jaw, slurred speech, buckling of the knees, or weakness in the arms.

EDS (excessive daytime sleepiness):
Fleeting urges to sleep, involuntary sleep episodes, overwhelming urge to sleep, and decreased alertness throughout the day.EDS reduces motivation and vigilance, interferes with concentration and memory, and increases irritability.

Hypnogogic Hallucination:
Intense vivid images, sounds and tactical sensations that make things seem real even though they aren't. Vivid dreams while falling asleep or waking up. Dream-like sensory and visual hallucinations experienced as reality.

Auditory Hallucination:
Very real-seeming sounds, registered by the brain as "heard" and not "thought", often mundane speech and environmental sounds without other confirmation such as seeing. Disorienting and disturbing being unable to trust your senses.

SP (sleep paralysis):
Sleep paralysis is an inability to move or speak while falling asleep or when waking up. Generalized weakness upon waking or going to sleep, being conscious but unable speak, move, or breath deeply. May occur during micro sleep, and sleep intrusions during waking activity.

Automatic Behavior:
Trance-like behavior doing things on "auto-pilot" for some time. Undertaking routine tasks without being conscious of doing them and most often not remembering.
During conversation to jump from one topic to another or just trail off and stop talking all together. Movements may be slow or clumsy, speech may be slurred, may be unresponsive or wake up suddenly. May be unpredictable or illogical.

Falling:
Weakness, numbness, stumbling, dizziness, non-peripheral vision, "syncope", cataplectic muscle collapse, sudden onset sleep attack. Contributes to daily danger of injury and accidental spills, fires, breakage.

Migraine:
Extreme headache usually centered on one side of the head and accompanied by severe sensitivity to light and/or sound. Intense pain often causes vomiting. Migraines may be preceded and/or accompanied by "auras" which vary from victim to victim from dancing lights or "rainbow" visual disturbance, to full color "light shows".
Visual disturbances with or without headache pain (optical migraines) accompany migraine processes thought to be related to changes in blood flow in the brain. Episodes may progress from visual "auras" to temporary blindness.
Migraines are truly debilitating, rendering the sufferer incapable of moving without increasing the pain and making it difficult or impossible to think clearly. Because they are so pain intensive, migraine sufferers may take a few hours to a day to regain their energy and equilibrium.
Some triggers include red wine, alcohol, red meat, MSG, sodium, certain preservatives, medications, allergies, smells, lights, sounds and stressors.

Oversleeping:
Difficulty or inability to be roused from sleep, even through hours of repetitious alarms, calls, and visits. There may be no memory of the wake-up attempts, automatic behavior may be reported, may have dreams and hallucinations about wake-up attempts.


INS (interrupted nighttime sleep):
Intrusion of wakefulness during nighttime sleep, waking suddenly without warning or cause, feeling alert and briefly refreshed. Intermittent waking and sleeping at night.


Insomnia:
Difficulty or inability to fall asleep; may be physically and mentally exhausted, sleepy and prepared for sleep, then lie awake for hours. May be unstressed, comfortable and on-schedule, every habit of night time sleep the same as usual, and remain awake.

Micro Sleep:
Sudden onset sleep, involuntary and without warning, during activity or inactivity, at rest or in motion. Not associated with emotion or surprise as in cataplexy, also not conscious and able to see and hear as in cataplexy. complete transition from awake to deep dreamless sleep instantly, usually for only seconds.

Microsleeps can be so brief we are unaware of them, usually a fraction of a second. We may think something was forgotten, which was never actually heard, because the information was given during a split-second microsleep.
Similarly at risk for accidents (especially driving), injury and breaking things, and may awaken with shock and anxiety, disorientation, nausea and diffuse head and body ache.
Microsleep may be imperceptible to other people. Or one's head may drop and hang unnaturally, with the body upright. May slump forward (into a book, into a meal), jerk upright or repeatedly bite the tongue during microsleeps.
Micro sleep may repeat at intervals all day during periods of stress or illness, from unknown factors and aggravating conditions, possibly from chronic sleep deprivation, or chemical imbalance due to medication, diet, stress.
Depression Secondary to Narcolepsy/Cataplexy: usually misdiagnosed, and ineffectively treated.

Night Terror/Nightmare:
Deeply disturbing fearful dreams, often with sleep paralysis and inability to wake from the dream. Lasting fear and anxiety after waking.

Sleep Testing:
Overnight sleep testing monitors brain waves, eye movement, breathing, leg movement and other signs of sleep and dreams, while sleeping overnight in a sleep lab.

MSLT (multiple sleep latency testing) is a daytime sleep test, consisting of naps and waking periods. Sleep onset time, and the time it takes for REM sleep, and duration and kinds of dream periods are measured. Considered conclusive for diagnosis of narcolepsy.

REM (rapid eye movement) is the deepest sleep, when dreaming and rapid eye movement take place. Thought to be needed for refreshing sleep, and necessary for mental and physical function.

Muscle Weakness:
Strength of muscles may weaken, even with good tone. May be from lack of restorative sleep, from changes in oxygenation of the blood, from metabolism changes in blood sugars/proteins. Exertion may feel like there is strength but not endurance...like having a race car but no gas.Lost Time:

Blurred Vision:

Memory Loss:

Disorientation:

Cognitive Difficulty/Delusion:

Intrusive thoughts:

Slurred Speech:

Vertigo:

Tingling:

Facial Paralysis:

Spasms:

Tremors:

RLS (restless leg syndrome):

Body Pain, Headache:

Anxiety:

Rapid Heart Rate:

Suppressed Breathing:

Guilt:

Personality Change:

Weight Gain/Weight Loss:

Unresponsive or Generalized Depression:

Succeeding/Failing:

Family Dysfunction:

Isolation:

Misdiagnosis:

Ineffective treatment:

Treatment Delay:

EKG (Electro Cardiogram):

Cardiac Echo Testing:

Hyperthyroid/Hypothyroid:

EEG (Electro Encephalogram):

Brain Trauma/Deformity and Neurobiologic Disease:




Posted on Nov 18, 2008, 11:51 AM
the thread at November 18 has posts from everyone, which I have incorporated here. the extra definitions at the bottom of the page are possible additions to the final description, I am not sure how to include them as "frequent or rare concurrent" or some other way.

Posted on Feb 12, 2009, 10:38 AM

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Progression of symptoms ? MS or N ?

by (no login)

I've landed myself in the Er 2x since my nightime sleep study on friday. I haven't been able to get in to see the neuro as he does not have emergency appts ( i have a scheduled appt. on 2/20), so I've been following up with my primary.
These "spells" are oddly bizaare and a feeling I have not ever had before. They begin with a sudden feeling of passing out , a quick wave of nausea, a quick pounding in my head, then intense weakness of my whole body including numbness and tingling in all 4 extremities. I've never felt so weak before, I felt as if my entire body is going to shut down.I have to hang on to things and move very slowly or i'm going down.

The first ER doc had no clue - they ran a cbc, bmp,and something called an mip. they did an ekg, chest xray, and nothing came up other than my low thyroid levels. The second ER doc yesterday had serious suspicions of MS because of how quickly this "spell" came on and has lasted. A restest of thyroid shows my levels bounced back to normal. A CT scan oif my brain only showed some benign vascular spaces of CFS nothing else. They sent me home again with no answers other than to go for the MRI my primary ordered me to have @ 5pm.

How do they really know the difference? The longer I go on with this the more I question what is N, what is thyroid, what is someting else? I can place N symptoms in my life but how can I really be sure? My ENT said I hould be tested for mysthenia gravis....... what the heck I'm more confused now than I was before being diagnosed!

Maybe I need to seek a counselor who is experienced in chronic conditions? Help!? I'm really confused.

I have plenty of whine if anyone wants to bring the cheese and crackers for a party~

Posted on Feb 11, 2009, 4:10 AM

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re: Scarlet

by (no login)

I have a friend that has severe MS. She is 44 now and was diagnosed 13 yrs ago. She is raising an8 yr old daughter and she needs a walker to get around. When she was diagnosed she has vision problems and after her eye exam she was sent to a Neuro. who did a CT scan of her brain and seen the lesions from MS. However your symptons could be many things. I had simular symptons and it turned out to be severe anxiety from a blood inbalance. I was amazed how anxiety can affect your whole body. I hope you find the answer soon. Be well, Charlie

Posted on Feb 11, 2009, 5:30 AM

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Re: re: Scarlet

by Scarlet (no login)

If it was anxiety wouldn't it disppear as quickly as it came? I still have residual numbness and tingling in the extremitie ( arms and legs). Interesting about the eye sight as I did complain yesterday that my periphial was not working it was rather fuzzy on the outer edges. Nothing of signifigance.

Posted on Feb 11, 2009, 10:42 AM

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re:Scarlet

by (no login)

Hi Scarlet, I talked to my friend Nancy about your symptons and she said to speak to a Neuro. She had a MRI or a CAT of her brain done when she was diagnosed. Cataplexy usaualy goes away right away and your legs come right back.. Her legs are always weah and uncontrolable. Charlie

Posted on Feb 11, 2009, 3:24 PM

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Re: Progression of symptoms ? MS or N ?

by (Login patlittlejohn)
Moderators

Youre not whining, youre coping. this is serious stuff, and you have the strength and character to go through it and doubt both your own strength and character.

yes, you could seek shrinkage from someone who treats chronic sufferers; but i would not go near there until this crisis is resolved. i would hate for some boob to tag this mental or psychiatric, and have other "experts" just leave you in that holding pattern.

yes, i think anxiety produces some of the weakness and "whooshes", but just keep that in mind and hope that is all it is. ("all" it is, not counting what an extra burden this has been).

ER visits are expensive and exhausting, but they eliminate the chances of catastrophic damage. God bless you and everyone who is there to help you.

extra testing, or rather next-step testing should be completely according to doctors you trust, and at your discretion. if you feel something is a misstep in the process, ask lots of questions, and try to steer them away from it.

can you try anything that treats C, and see if the mystifying symptoms get better or stop? that would seem to be a process of elimination that works backward from what they already know.


take good care, and you can email me anytime, Honey.

pat

Posted on Feb 11, 2009, 6:00 AM

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Re: Progression of symptoms ? MS or N ?

by Scarlet (no login)

I'm not making any moves without the consent of my primary ( he can see something is wrong but does not know how to fix it). I am hoping he was able to reach the neuro.

I talked to my dad this morning and he seems to think I need to have arterial studies done as he states it runs in his side of the family. All i know is the doctors told me they could not admit me unless I had chest pain. I have a bit of fluttering but no pain and I won't lie just to get admitted.One of the blood tests MIP came back saying suspicious for acute myachondrial necrosis? This weakness just won't let up. Doesn't C let up after a while?

I am not supposed to take any meds at this point but being in this veggie state is downright awful. At least before this I was making it to work and functioning on some sort of level.I am unable to drive since sunday morning due to the weakness in my legs and feet. I think my arms could make it but the strength in my legs is just not there.

The first spell happened the morning after the sleep study so I just assumed I was tired, even though the tech said I was a very sound sleeper. The second spell happened at exactly the same time the next day and has not left the building yet.

I'm seeing the primary soon, just waiting for my son to come home and drive me there.I'll keep you posted. Thanks for the encouraging words.

Posted on Feb 11, 2009, 10:55 AM

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re: Progression of symptoms?

by (no login)

It becomes more difficult for those of us with N as we get older. Just because of the aging process our cells all go through. Autoimmune diseases have such an aray of symptoms and many spill over into chronic diseases. I have been having horrible back pain for about two and a half months now, across my shoulder blades. I went into an urgent care about a month ago, thinking I had an upper respiratory infection or something. I have chronic allergies and being on a cpap at night puts me at greater risk for upper respiratory infection. But I did not have any other symptoms, shortness of breath, congestion, etc. They put me on antibiotics, didn't get any better. Two weeks later made an appointment with a GP here in Arizona. She says the only thing there in my upper back was my lungs and my spine. I had a chest x-ray, negative for pneumonia or bronchitis. Now I'm scheduled for an MRI on Wed. The point being that when one has to distinguish between everyday aches and pains, fatigue and everything that goes along with having N w/ C, it's hard to explain to a physician. I find myself, saying I have more fatigue than usual, or more constant pain than usual. I too, have chronic heart problems in my family and most women do not have the same symptoms as men when it comes to heart disease. If my back is all ok, I'm thinking degenerative disc disease, then a heart work up is what the doctor suggests as the next step. We just have to keep going and don't let the docs screw us around with the standard, "It's all in your head".


Posted on Feb 11, 2009, 2:53 PM

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T3

by phil (no login)

get thyroid med called T3 close to full repalcement and take before bed ,keep taking it or you might end up in the morgue dead but still alive
just my opinion

Posted on Feb 12, 2009, 7:59 PM

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Re: T3

by Csarlet (no login)

finding a doctor to prescribe it is the hard aprt. Most endos here work with T4 meds but their specialties are really diabetes. Is there an off market label to be found?

Posted on Feb 13, 2009, 3:16 AM

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also

by phil (no login)

get tested for celiac, what were your HLA results

Posted on Feb 12, 2009, 8:01 PM

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Re: also

by Scarlet (no login)

I've been tested for that ebfore but it was another normal test.

Posted on Feb 13, 2009, 3:17 AM

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Re: also

by Scarlet (no login)

hla is or N right? I've not had that one yet.

Posted on Feb 13, 2009, 3:50 AM

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Re: also

by (Login patlittlejohn)
Moderators

HLA blood "marker" test is painless, unless you count pulling teeth with the doctor or insurer: they had to send mine to Maryland or somewhere, took them 2 weeks to order the right container and what not. it was a bit of a circus.

mine showed 2 positives for genetic predisposition, which has some false negatives in some populations, so if it is conclusive for you, good; if not, it doesnt mean that much. odd huh?

Posted on Feb 13, 2009, 10:01 AM

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some symptoms returned

by (no login)

Hi all... After a period of not having symptoms (6 mo.) except for lack of sleep some of my symptoms have returned...I have been falling asleep during the day (without warning) and have that cataplexic "feeling" coming on... Love to all, Charlie
PS I will keep you all posted of any changes... I thought I was getting better

Posted on Feb 9, 2009, 6:06 PM

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return

by (no login)

I am sorry for your setback.

If you have this condition, and get over it - Then you are in Heaven - but you are H.H, that you are
still hear

Posted on Feb 9, 2009, 7:40 PM

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re: George

by (no login)

Hi George..I've had N most of my adult life. Over the past year my symptoms had all but stopped,except for lack of sleep and waking every 20 min. or so. A few weeks ago I started falling during the day at times and started to get some mild cataplexic attacks. My eyes also started to play tricks on me, 4 times I've seen green when the light was red. I must be very carefull when driving. Charlie

Posted on Feb 10, 2009, 4:46 AM

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Charlie

by (no login)

Driving can be hell. Usually its with A.B., but I have hallucinated driving to the woods, low speed on gravel roads. Cataplexy, thats the determinor for lost driving rights. In some states your Dr.
has to notify the motor vehicles dept of your cataplexy.

Posted on Feb 10, 2009, 8:34 AM

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Re: re: George

by (Login patlittlejohn)
Moderators

Charlie,

i love it that you get better some times, and i know i have and i will too.

that light thing has me spooked; not that i mistake what color the light is, but that i KNOW !! that i am safe to go when i see the red. all switched around in some part of my brain that i trust.

noticed it a few times when i was a passenger, then i ran down the block to the store and scared myself to death.


i still can read (again in the last 9 months), and all the goodies that i love and missed: staying conscious, understanding, reading fast, remembering, following the story and noticing details, and best of all when i pick it up another time, it is all still inorder in my mind.


i can only thank Heaven, i can return eagerly to a good book, read it in quiet for hours, then get UP to do something else. this is my miracle.


Last week was the Stand Down at the phoenix vets memorial colliseum: the shuttles ran every 30 minutes, picking up homeless and needy veterans in a huge radius of Phoenix. there were services, like counselling, va and va medical benefits help, drivers liscenses and IDs, housing, tax help. there were medical and dental care, new clothing, knapsacks, ponchos, showers and haircuts, hot food 3 times a day, a place to sleep for those 4 days and nights, and an area full of second hand clothes.

it was all free, and all veterans were welcome. it was very well organized with volunteer veterans serving in every way, no security on the premises, (such a group of brothers and sisters in arms were very self-regulating); lots of women vets from as early as korea, lots of understanding and laughter and respect.

over 1000 were helped. we are still deep in reflection and prayer about the whole week. wow.


i finally just had to sit down and stay out of the way, exhaustion put me deep into HH and attacks, but no one criticized me. my emotional effects were severe, but worth it, and believe me the "normal" volunteers were exhibiting many of my emotional responses too. it was very affecting.


sponsorship and some of the funding, etc, are connected with The Run To The Wall, a cross country effort to gather and travel together from california to the Wall in DC. i believe both Stand Down and Run For The Wall are websites.

Posted on Feb 10, 2009, 2:55 PM

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60

by phil (no login)

will be 60 soon don't know if it's like you, but it's like everything changed

meds aren't the same, new planet

Posted on Feb 11, 2009, 3:02 AM

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re:Phil and Pat

by (no login)

Age may have something to do with it, I'm 64 and can function better than before when I was younger. Like Pat I can read and not fall asleep. When I was in my 30,40 and early 50s. I was having so many attacks. falling asleep if I sat down for more than a a minet, this has gotten so much better as I got older. Pat, that was a great note about the Vets. I wish I could have been there.... Charlie

Posted on Feb 11, 2009, 5:16 AM

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Re: re:Phil and Pat

by (Login patlittlejohn)
Moderators

thanks, Charlie.

You can find the whole schedule for 2009 on the Stand Down site, and I completely recommend touching base with them when they are close enough.

So many of our group here are Vets, and you don't have to be able to stay long or work hard, just to go and offer a "hello", some fellowship, a word of appreciation.


There is a loving couple (dear friends) who are involved 6 years now; every time they met or served another person, they met his or her gaze, shook hands, and just said "thank you for serving".

they made it look so simple, and I saw hundreds of different responses, from surprise and a "oh its ok" to a hug and tears.


She told me that especially with homeless (and shelter resident) vets, they become invisible in society, and one of her primary purposes at Stand Down's is to offer them respect.


Phil, congratulations on your birthday~ it may be hard to see what earthly good we might be, these years. but I am so grateful for you, and you contribute to life-saving knowledge and accessibility here in the global information world.

Jim turned 58, and after all that went before, we see that he has been kept here (with stage 4 cancer for more than 5 years) and equipped by his life for some unforeseen contribution... some we can only wonder at, some we won't ever know.

Posted on Feb 11, 2009, 7:17 AM

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The Big 60

by (no login)

I'm with you Phil, my biggie is in April. Maybe this spring, when I'm in Portland again, we can get together and celebrate, 60 is the big one! My husband says it's no big deal, as he is on his way to 63, but it is a big milestone for me. My fortieth had a big effect on me, not so much the fiftieth, but the sixtieth, we're getting old!

Posted on Feb 11, 2009, 10:54 AM

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Pam

by (no login)

Hey your husband is right! 60 is no big deal, I will be 70 in September, and I plan on being here
for 80. I have an uncle who will be 100 in July, now thats something!

Creswell Or.

Posted on Feb 11, 2009, 4:41 PM

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60

by phil (no login)

if I was married to the right lady ,had the house paid for and enough money maybe it would be alot better but I have nada except for my grandkids and they are in alaska

Posted on Feb 12, 2009, 2:43 PM

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60

by (no login)

Sometimes be careful what you wish for. Marriage has its ups and downs, especially when you're both retired, the 24-7 thing, my house is on six wheels and I have to admit money would be nice. But the most precious is our grandkids, that's why I visit Portland every year.

Posted on Feb 12, 2009, 3:09 PM

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60 +

by (no login)

Be thankful when you have a partner that can do the driving. My wife does not drive any more.
I am the one with N., I drive us to the Dr's, and locally. I will not go more than 50 miles from home, so that leaves us home most of the time. I had to make that choice because staying alert is
harder, and I will not be responsible for taking anyone's life. Luckily we get along well, and we
enjoy each other.

Posted on Feb 12, 2009, 4:33 PM

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60+

by (no login)

I am thankful for many things. My husband does all the driving, all the time. He is a type 2 diabetic, has to have an annual eye exam and new glasses each year. If his eyes go we are up the creek without a paddle. Driving is a serious responsibility when you have N, to drive or not to drive, I'm not confident enough to know that I will NOT fall asleep, so I have to pass on taking a chance. I'm faced with the probability of taking my mothers car away from her, she is 83. Since her fall at church a few weeks ago, dislocating and fracturing her shoulder, she is unable to drive right now. I have heard from many of her friends and my oldest daughter regarding her driving and it sounds as though she is becoming a threat to herself and others on the road. This is something I have not been looking forward too, since my father passed away a few years ago, my mother is a social butterfly, always on the run, doing for others and visiting friends in care centers. Her driving is her independence. In a round about way I have talked to her lately about how I feel when my driving priveledges were taken away and she understood my feelings, but when that day comes for her I have a feeling she isn't going to be so understanding.

Posted on Feb 12, 2009, 6:54 PM

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Phil, GEM, Pam, Melody, Dawg, Charlie and...

by (Login patlittlejohn)
Moderators

all my sleepy ones:


this age is a big scary landscape, and i believe we are so blessed if we have a spouse.

putting up with each other is something a person does, who realizes they dont want to go it alone. i am so grateful to live in a happy home, with someone who chooses to be positive and loving. i know i may probably be alone again.


the thing is, my daughter with Asperger's has disappeared, leaving her husband, 4 year old daughter, and 1 year old son. He is also drifting somewhere with the children, and i have terrible attacks wondering if i will ever know where they all are again.


maybe the 60's are designed to urge us toward God. just a thought.


i care about you very much, and in all these things i do call on the Lord more than ever in my life.


pat

Posted on Feb 12, 2009, 9:11 PM

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re: Pat

by (no login)

I'm sorry to hear that about your daughter and grandkids.. That would be tough to handle. I feel as you do about faith in God. He is with us through good and bad times. ...... Charlie

Posted on Feb 15, 2009, 5:07 AM

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Stalking Irish Madness

by (no login)

Has anyone heard of Stlking Irish Madness? Is there a correlation between it and N due to the fact that the Irish have nearly a three times more incidence with N?

Posted on Feb 8, 2009, 7:05 PM

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book about schiziphrenia

by phil (no login)

all I know is it's a book about schiziphrenia

Have you read it ?

Posted on Feb 9, 2009, 12:43 AM

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spelling boo boo

by phil (no login)

sorry bout the spelling boo boo ,just had a couple brewsky's

Posted on Feb 9, 2009, 12:44 AM

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For you CPAP guys

by (no login)

Im not sure if any of you that use a CPAP know about this just wanted to let you know I found out about this the other day and thought it looked really useful for you guys that use CPAP.

nomask.com

They came out with a CPAP PRO, wich is a CPAP without the mask. Just sounded really cool thought you guys might want to check it out.

Posted on Feb 8, 2009, 6:20 PM

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Thanks

by Bulldawg (no login)

Thanks for the heads up. I can't stand anything in my nose like that. I wear the mask that covers my nose only.

Posted on Feb 10, 2009, 3:35 AM

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Re: For you CPAP guys

by (Login patlittlejohn)
Moderators

easy to find, lots of distributors. thanks

Posted on Feb 10, 2009, 3:04 PM

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Sleep Study while on Xyrem and venting!

by (no login)

I've been having a major increase in my symptoms so my neuro has decided to do a sleep study while taking xyrem to see whats happening.My last 2 psg's revealed a mild upper airway resistance so off i go to yet another sleep study.

The last several weeks have been down right awful and the only doc I can trust right now for proper treatment is my neuro.

The ENT i went to for chronic sinus infections said either I am depressed or i really need to be evaluated for mysthenia gravis! What the heck? Another mis informed doc there!

My endocrinologist - my thyroid labs came back odd normal tsh -below lab levels of free t4 ( this would indicate i need more medication) to which the doc replied - this is because of your xyrem we'll redo your labs in 6months your symptoms arre not thyroid! I called my neuro with the results who agreed with me I need more medication so he sent me to his wife's endo
for a 2nd opinion OH BOY this guy was good! At first he says yea I can see you are hypothyroid so I get excited thinking ahhhhh a doc who gets it only to have a sleep attack in his office which further stresses me to have some mild C ( unable to hold my head up , arms go limp) which leads him to say your symptoms are not related to thyroid - whether it is depression, anxiety, or a mental illness or whatever please continue with your previous doctor!

I HATE THE MEDICAL WORLD FOR NOT UNDERSTANDING N!!!!!

i know this post is a bit choppy but i am soooo disgusted right now - my neuiro is the only doc who gets this and i won't see him for another 2 wks so i will have such joy going in hypothyroid heck which further aggravates the EDS.

Somedays i feel like god has forgotten me.

Posted on Feb 6, 2009, 12:53 PM

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Re: Sleep Study while on Xyrem and venting!

by (Login patlittlejohn)
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I know that feeling, Scarlett dear, yet i know He has not.



almost anyone can be seeing more than one specialist at a a time, do they always disagree on the fundamentals? or knee jerk toss us away as head cases when we have C???



i pray (not being a clod here, this part i CAN do to help) that the Lord bless and keep you during these hard hard weeks. believe me, when its my turn in the deep fog, i cant pray.

So i know He has you in loving hands, knowing we are helpless and protecting us.

Posted on Feb 6, 2009, 4:21 PM

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Re: Sleep Study while on Xyrem and venting!

by (no login)

Thank you ever so much Pat. I know god MUST be carrying me (1 set of footprints) and this is all in his plan but being here in the flesh makes me weak and have doubts about the purpose and timing of the plan.(I call it the remote control era - everything now!?! Click click the batteries must need changing!)

The last few weeks have me going backwards. When I started Xyrem in October I felt reborn and an image of my former self began to imerge. Then came another strep infection and 2 weeks later another sinus infection I had to stop the Xyrem because it was causing difficulty breathing afterall my sinuses were blocked. I even had to cancel my december appt with the neuro because I was too dizzy and tired to drive there. His office is 45 minutes from home and 1 hr & 20 minutes from work and I won't drive more than 20 minutes when I feel that bad, I even had to take 2days off work. By the time I got to his office last month I was completely sleep deprived again and my symptoms were almost double what they were. I was back to nappping and 60mg of ritalin during the day.

I was falling ever so hard and having to see other doctors who don't understand the dynamics of N and the impact it has is totally unacceptable especially when it's a person who has been a patient of theirs for 2yrs.That's why I went to endo#2 - I figured since the neuro recommended him he'd be more understanding and know that something is up if the neuro thinks my labs are off.But NoOooOOO!

It's 7:30am now and I'm home from the sleep study - the tech would not give me any inkling at all of how it went other than to say you're a good sleeper but very restless. i don't want to wait another 2wks for an answer!

Posted on Feb 7, 2009, 4:48 AM

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re: Scarlet

by (no login)

"They" wanted to give me Xyrem a while ago and after watching the video I opted too pass... It scared me not to be in control.I wish you well and hang in... Charlie

Posted on Feb 9, 2009, 5:57 PM

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