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Narcolepsy Message Board and Help Forum

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

New to Site and Need Help

by KeithG (no login)

Hi all --

I need to start somewhere. I just had three episodes of sleep paralysis in the past hour. I am getting really tired of it. I believe that I have narcoplesy. I remember being tired all the time since high school. I am now 38 and I have never had a day when I am full of energy. Sleeping for 4 hours or 10 hours looks much the same. I had three sleep tests checking for sleep patterns and all of them checked out negative. I tried provigil and I admit the first two days were god-send. Then the third day it stopped working. I was back to my old self. It is like my body rejected it. I am trying to understand myself and how I could cope with whatever I have better. Any suggestions or feedback will be greatly appreciated.

Keith

Posted on May 4, 2013, 10:36 PM

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Re: New to Site and Need Help

by Jack (no login)

None of the doctors gave you some sort of diagnosis to help explain what is going on with you? It would be good to have a proper diagnosis. If you think it's narcolepsy, a spinal fluid test is definitive. If it's not narcolepsy, what is it and how should it be treated? Good luck.


Posted on May 7, 2013, 5:44 PM

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Re: New to Site and Need Help

by KeithG (no login)

Thanks Jack. I will try to get that diagnosis and see if there is something out of it. Cheers, K

Posted on May 9, 2013, 8:41 PM

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Stanford University Medical Center

by (no login)

Six months ago I sent off forms to become a brain doner at my death. I never heard back from them and I was ready to write it off.
Ten days ago I received papers to sign, and additional papers to become part of study group.
I had blood drawn and FedEx'ed them along with all the paper work, at 2:00 yesterday afternoon.

I am happy to be able to contribute my brain for Narcolepsy. I have never been able to contribute anything towards a lessening of the effects of this condition on us. I know that this will never have any benefit on me, but may be some help for those who follow.

Anyone interested in more information can contact: MS Mali Einen,
[email protected] Or call her at 650 721-7550

Ted, Creswell, Oregon

Posted on Apr 30, 2013, 3:45 PM

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Re: Stanford University Medical Center

by Melody (no login)

Wonderful contribution, Ted. Thanks for the contact information. I haven't spoke with Mali for years..will be good to talk to her.

Posted on May 1, 2013, 11:32 AM

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Mike N

by mindy r (no login)

Has anyone heard from Mike N.


Posted on Apr 6, 2013, 10:43 PM

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Sleepy Head Gang Roll Call

by Bulldwag (no login)

Sounds like its a good time for a roll call.

Posted on Apr 7, 2013, 3:59 PM

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Re: Sleepy Head Gang Roll Call

by Melody (no login)

Here happy.gif

Posted on Apr 9, 2013, 12:17 PM

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Roll Call

by GEM (no login)

taking a nap, but still around. Ted

Posted on Apr 10, 2013, 2:53 AM

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RE Roll Call

by Pam (no login)

I'm still around too.

Posted on Apr 15, 2013, 2:32 AM

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Here!

by (Login doinmdarndest)

Present! Here!

With bells on!

Posted on Apr 20, 2013, 4:19 AM

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present

by (no login)

Estoy here.

Posted on Apr 20, 2013, 7:47 AM

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bizarre lost time..input please!

by (no login)

Left house to go to work today (about 5 miles away). Stopped at store on the way. That is the last thing I remember until 2 hours later when I realized I was sitting on a bench by a lake 45 minutes from home. In addition to the complete loss of memory, scary thing is I drove.

Is this a new aspect for me of my narcolepsy, side effect of Adderall, or some new freaky thing all together.

I went to my doctor, passed the standard neurological tests. He is now sending me for a psych eval.

Thanks in advance for any input!

Mindy

Posted on Apr 4, 2013, 7:06 PM

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lost time

by (no login)

This only happened once in my life.
I was driving from Alameda, to San Rafael Ca. I pulled off of hwy 40 (I 80)into Richmond, headed for the bridge. Next thing I remembered was pulling onto hwy 101, in San Rafael. I drove to the bridge, paid to cross and went across the double humped back bridge and never saw any of it.
This happened in 1960, I didn't have any signs of Narcolepsy until 1967.
I never found any answer to what happened. I was up all night and this happened about 4:30 in the morning.
I worried about it but it never happened again.
Ted, Creswell Or.

Posted on Apr 5, 2013, 8:27 AM

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thanks

by Mindy R (no login)

Thanks Ted,

I was very calm about it at the time, but now I'm a bit freaked out.


Posted on Apr 5, 2013, 9:51 AM

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Automatic Behavior

by Bulldawg (no login)

I have done it once or twice. The "recording" part of the brain stops. Your still fully functional, just not recording what you did.

Posted on Apr 5, 2013, 4:56 PM

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re: automatic behavior

by Pam (no login)

I agree with dawg on automatic behavior. This kind of stuff happens to me all the time. In my forties I used to drive 40 miles to work one way and many of those times there where parts of that drive I did not remember. My drive was 20 miles along the lonely river road then turn right and go up a hill 20 miles to home. No stop signs or stop lights. I would leave town on the hwy and along the river and wake up a few miles from my house, not remembering the turn up the hill onto a very winding road. It was very scary. While I don't drive any more I still do things in automatic behavior, especially sewing. My husband has pictures of me sewing at my machine, quilting, with my eyes closed. When I awake I don't remember doing it until I look at my work, which is off in every direction and has to be ripped out.

There is another behavior similar, called global amnesia. My mother got this some years ago when working out in her garden. She had been out several hours in the sun. She stood looking at her garden and my dad who was working on some landscaping and went over to my mom to admire her work. She looked at him, didn't know who he was, where she was or anything. He took her to the hospital and tests were run for stoke, etc. The doctor said she had global amnesia, which usually only happens once in a life time and lasts 24 hours or less. In about 20 hours she regained her memory, but was unable to recall those twenty hours. This did happen one other time to her for only about two hours when driving her car and ended up across town, when she was on her way to church only three blocks away. She couldn't remember her name or anything and was really in panic mode, unable to ask for help, but as suddenly as it came on, it went away and she found her way back home. That was really scary.

Posted on Apr 6, 2013, 4:13 AM

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Re: re: automatic behavior

by mindy r (no login)

That would be scary!

Thanx Pam


Posted on Apr 6, 2013, 10:40 PM

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Re: Automatic Behavior

by mindy r (no login)

I've had automatic behavior before, but always vaguely remember bit and pieces. Never have I lost 2 hour 100% no recollection of any of it.

I really do hope that is what is going on! A lot less scary to me than dissociative disorder!

Thanx Dawg


Posted on Apr 6, 2013, 10:36 PM

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Black out

by Jack (no login)

I used to have a night job driving. One trip I was out in the countryside- the next thing I remember I was back in town. I couldn't remember anything regarding the drive back into town. It really scared me and confirmed my realization of how profoundly tired I am as a narcoleptic. I will never take another job as a driver because of this incident.

Posted on Apr 28, 2013, 9:44 PM

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Web Site

by (no login)

Hi Melody

I couldn't bring up the "Our Experiences with Narcolepsy", web site for about a week. But its back up again.
Ted, Oregon

Posted on Mar 25, 2013, 3:32 PM

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Re: Web Site

by Melody (no login)

Yes the entire website had some server problem. Hopefully all of its back to normal .

Posted on Mar 28, 2013, 8:49 PM

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Quiz

by ev (no login)

Hi folks.
Would like to ask everyone about their night time sleep.

-How many times do you wake during night?
-Whats the total of hours slept through night?
-Whats the longest amount of sleep(without wake)in one night?

I know disturbed nightime sleep is part of having N but just wanted to see how i faired with others.
I havn't slept for 6-8 hours in one night since i was a little kid and diagnosed.

My current answers to the above is:
-i wake 3-8 times,average of say 4.
-i try get 7-8, no matter how broken
-about 5, and i thought it was a miracle



Posted on Mar 18, 2013, 6:02 PM

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Re: Quiz

by Melody (no login)

Hi ev happy.gif

I wake up about 4-6 times a night...sometimes more.
I stay in bed around 8-9 hours..total hours actually sleeping is different every night.
The longest I can remember is 3 1/2 hours...and that only happened once, I think.

I dream so much during the night, that exhausts me more than the waking up.

Melody happy.gif

Posted on Mar 19, 2013, 12:54 PM

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re:quiz

by (no login)

Hi Ev,
When I was still working I would try for 6 1/2. Now that I no longer work I think I am getting 5 1/2.
I get up two or three times each night. I nibble on something and read from 20 min. to an hour. I do not know how many times I awaken.
I have not slept more than 4 hours at one time for more than 20 years.
I too spend most nights involved in dreams.

Ted, Creswell Oregon

Posted on Mar 19, 2013, 3:48 PM

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re: quiz

by (no login)

Hi!

1. I wake 3 to 6 times, or more times, each night. Usually just laying there, I fall back to sleep before long, but not always...
2. Typically 8 to 9 hours. But, awake feeling like it was 3-5 hours of sleep. Dreams can be exhausting, for sure.
3. Probably 3 to 5 hours, sporadic night to night.

Very very occasionally, yet it is rare, I'll get what feels like a good nights rest. But hardly do I ever feel both mentally and physically, well rested...
Good questions.

Posted on Mar 19, 2013, 7:06 PM

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Thanks

by ev (no login)

Thanks peoples.

So it turns out i dont fair too bad compared with you lot.
Was hoping you's had it much better and to then have something to work towards.
But mabye it's just like this.
Were doomed from the start really.
Sadly, even when i get what i consider a good night's rest, there is not much of a hint it pays off the next day. Still get tired as always, still need same naps ect.
I'm a bit nervous with heavy sleeping aids, in case i don't wake up like.
I have recently tried mild herbal sleep aids and can't see any improvement.
I have been trying to reduce nap times and make sure theres none after 3pm in order to help this, and even when i force myself to avoid naps, i still can't sleep well.
Told someone i hadn't slept for 5-8 hours straight since young and they nearly cried.
This is only just one part of this disorder i was thinking.

Cheers for answers,

Posted on Mar 20, 2013, 3:38 PM

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Quiz

by Pam (no login)

I usually wake 3-5 times a night..sometimes I just go back to sleep...at least 1 time I have to get up for about an hour.

I'm in bed at least 8-9 hours, but my total hours vary every night...somewhere between 6-7 hrs. I to have many vivid dreams and sleep paralysis nightly.

According to my sleep journal I have had two nights in one year that I actually slept 8 hours straight.

I take Advil PM nightly and sometimes I can sleep 4 hours straight without waking. However it makes me more tired in the morning with alot of brain fog. The night time fragmented sleep is one of the most bothersome symptoms. It's easier to put up with the cataplexy, dreams and sleep paralysis, but being exhausted and just wanting 8 hours of sleep and not being able to get it is really frustrating.

Posted on Mar 24, 2013, 10:52 PM

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pretty much the same here.

by Mindy R (no login)

4-5 times a night. Last time I slept through the night was a few weeks ago. I luckily get that once every couple of months. When it happens, I really hate my alarm clock!


Posted on Apr 5, 2013, 9:54 AM

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Re: Quiz

by Jack (no login)

While reading before bed, I must fall asleep and wake up at least ten times. If I get through three pages in an hour it's a miracle. It makes me a very slow reader. I have to count how many times I awaken in the night. It seems I remember every time I turn so it must be a lot. I can however always count the number of times in a year I don't want to go back to bed by eleven in the morning-- that number is three.

Posted on Apr 11, 2013, 12:15 PM

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Wow

by (no login)

I have just found this site. I am being evaluated for narcolepsy in a couple of weeks (polysomnagraph and MSLT). For me I wake 2 to 5 times a night. I am usually up for anywhere from 1 to 2 hours a night. I average betweeen 4.5 and 5.25 hours a night and set aside 6 to 8 hours for sleep. The longest I sleep at one time is about 3 ours with strong meds. I am always tired in the morning sometimes horribly so and fatigued for all day. I just have gotten used to being fatigued, even though not always sleepy. I don't know the last time I slept 7 to eight hours in a night. Its been many, many years.

Posted on Apr 26, 2013, 5:41 PM

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Please reply :)

by Melody (no login)

If you are able to get on here, could you post a reply to this message, please? I've received an email that someone is having problems and just want to check on others. Thanks.

Posted on Mar 10, 2013, 11:41 AM

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Hey Melody

by Bulldawg (no login)



Posted on Mar 10, 2013, 3:43 PM

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Re: Hey Melody

by Melody (no login)

Thanks, Bulldawg happy.gif Hope you're doing good!

Posted on Mar 10, 2013, 10:11 PM

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Every Dawg

by Bulldawg (no login)

Every Dawg has its day and right now the roses are looking good. Hows it on your end?

Posted on Mar 11, 2013, 3:17 PM

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Re: Every Dawg

by Melody (no login)

I'm surviving..lol..keeping busy as much as possible. happy.gif Always good to hear from you.

Posted on Mar 17, 2013, 12:31 PM

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Hi Melody

by (no login)

My link to this site quit working. I finally found a way to get back on, so I am good to go.
GEM

good to hear you out there Bulldawg!

Posted on Mar 11, 2013, 9:17 PM

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Re: Hi Melody

by Buuldawg (no login)

Sorry its been awhile. Working my butt off.

Posted on Mar 12, 2013, 1:35 PM

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ignorance

by Pam (no login)

It never fails that there is always that someone that has to show their ignorance.

After getting my Proclamation from the Governor, declaring March 9 Narcolepsy Awareness Day in Idaho I went to the local paper and they wrote up an article regarding Saturday. Another paper in Boise picked up on the article and wrote one also, getting the word out to the southern part of the state. The Narcolepsy Network picked up on the link and posted it on their facebook page. The Boise Weekly has a blog spot that featured the article and the very first comment was "maybe she just attended one of the Governors many parties". In response the Narcolepsy Network made a comment to her addressing her ignorance. It never fails that there are still people out there that are so insensitive to the plite of others.

Posted on Mar 8, 2013, 10:47 PM

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Changes

by Melody (Premier Login cataplexic)
Forum Owner

Interesting things happening here after all this time. First of all, I'm moved into my house in my new small town. I went to a nurse practitioner today to be able to get my prescriptions for high blood pressure meds renewed. For those that don't know me, I haven't been on any N or C meds for several years. I stopped them on my own cold turkey (probably stupid but didn't think about it at the time)and had no rebound effects. My cataplexy was improved a great deal so all was fine and dandy. About 3 years ago I had a very traumatic botched surgery and put me in a pretty low place. My doctor basically insisted I take anti depressants. I've been taking them up until about 4 weeks ago when I started weaning myself off of them (I was smart this time..lol). I cut them in half and took only half for a couple weeks..then every other day. Boy oh boy...cataplexy has reared it's ugly head almost as bad as it was at the very beginning. I think it's rather unfair that after not having an issue with it for so long.. that I take those pills..stop ..and it all comes back..lol. So..at the NPs today I had at least 4 attacks, one of them lasting 15 or so minutes. They have now put me back on anti depressants...and because she was extremely worried about me driving (I have NEVER, even now, had issues while I drive even though I put my own restrictions on driving long distances)she insisted I take stimulants for driving. Basically she was saving her own butt. If I were to fall asleep while driving and they knew that she knew and didn't treat it...they could sue her as well as me. Now if she prescribes the meds and I don't take them and crash...she cannot be sued. So I agreed to take them otherwise she would report me to the DMV as being narcoleptic without meds. I now have Ritalin (5 mgs) to take when I'm driving. This has really been pretty surreal. I feel like I'm starting all over again after about 27 years. Thanks for listening happy.gif.

Melody

Posted on Mar 4, 2013, 9:07 PM

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Changes

by (no login)

Melody
Sorry to hear former problems are rearing their ugly heads. Maybe your recent move reactivated your Narcolepsy. That isn't far from where I experienced my first symptoms, that was in 1967. Wow! 46 years ago.

Bend always had top medical expertise available. I do not know how it is now.

I do wish you luck in getting things under control. Getting old and having to deal with loss of muscle strength and control, is bad enough.

Ted

Posted on Mar 6, 2013, 4:10 PM

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Re: Changes

by Melody (no login)

Thanks, Ted..best wishes to you and your wonderful wife.

Posted on Mar 6, 2013, 10:11 PM

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re: changes

by Pam (no login)

Oh Melody....so sorry to hear that symptoms have returned in full force. I definately feel your pain there. Like you, I stopped my meds after I retired from working and do just my scheduled naps everyday. My cataplexy is pretty bad too and you know falling to the ground, especially as we get older, is a serious thing. I just haven't been able to drive at all since 2003. I used to restrict my driving too, until I could no longer fight my sleep and started noticing that I had been asleep only after waking up and then on another instance having a cataplexy attack while driving...OMG, scared the bejibbers out of me.

I have been working hard, raising Narcolepsy Awareness in my hometown. Several of us from the Narcolepsy Network Membership have drafted Proclamations to the Governors of our respective states to declare Saturday March 9 "Narcolepsy Awareness Day". I started my petition and sent it in the first part of Jan and just recieved my Proclamation a couple of days ago. I made posters including a photocopy of that Proclamation and put them up at our local hosptial, sleep lab, doctors offices, Junior High and High Schools. Yesterday I went to the local paper and today there should be an article about raising Narcolepsy Awareness. I just want to do what I can to help the cause and to get those developing this debilitating disorder early diagnosis. I hope to get a little earlier start next year in getting a Proclamation for 2014 and maybe with a little help from friends organize a "Walk for the Cure". This would be a big undertaking for me, but I'm always up for a challenge.

I'll keep you in my prayers, Melody, that everything improves for you. You know how stress can affect us and a move can definately do that. My husband and I just moved our daughter a couple of weeks ago and it took me days to recoup from that.
Thanks again for providing us this forum.

Posted on Mar 7, 2013, 6:00 AM

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Re changes - Pam

by (no login)

Pam, are you living in Idaho still? I was curious as to where Narcolepsy Day might occur.
Its so good to hear that you are out there, still doing battle.
Its been so long since any of the group from a few years ago have posted, that I was beginning to think everyone was gone. I miss the daily chatter and friendly help found here so often.
The big struggle for me now is excepting the losses that come with the aging process. The loss of muscle tone and flexibility is a blow to my mental out look. I am still in good shape, just missing the things that can no longer do.

Ted, Oregon

Posted on Mar 7, 2013, 7:43 AM

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re changes - Pam

by Pam (no login)

Yes, I'm still around and kicking in Idaho. My husband bought a new pontoon boat last fall and we've been out doing alot of steelhead and salmon fishing. We've decided because of the economy we are going to put our fifthwheel up for sale next month and get back into a house or duplex. My husband has type II diabetes and is having some complications due to that, so being eyesight is a problem, I don't see us traveling much any more.

I miss our old group too, it seemed more like a family connection. I understand that things change and people move on, but I feel that us older folks had some wisdom to contribute to the younger or newer diagnosed narcoleptics. I still talk with Pat on the phone occasionally, she is in Colorado now since Jim died. We facebook too. I would like to add some of you to facebook if you have a page, I guess its more convienent.

Glad to hear you are doing ok in Oregon, Gem.
Take care, I'm still checking in even if I'm not posting.

Posted on Mar 7, 2013, 9:30 AM

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Re: re: changes

by Melody (no login)

Thanks, Pam..you all are always in my prayers as well. Kudos for you for the work you are doing. It will go a long way in making people aware. Thank you for that. Take care.

Posted on Mar 7, 2013, 8:31 PM

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Help!

by (no login)

Okay so I have only recently been diagnosed with Narcolepsy after a battery of mostly inconclusive tests. Electrodes shown "interesting results", but nothing definitive, sleep studies show I fall asleep faster than average however don't hit that key REM sleep that definitely pins down Narcolepsy, yet my symptoms are too crippling to overlook. First of all, the reason I began seeking help began when hallucinations set in. After falling into a sleep I would awaken to some hideous trick of the mind. People, bugs, orbs, monsters; you name it, I've probably seen it. But not only have I seen them, I hear and even feel them. Secondly, the fatigue was horrible. I couldn't go the whole day without passing out for a short while, anything over two hours I awakened to feel groggy and tired, even worse than before. I also experienced, under times of great emotion, loss of muscle control in my legs as well as sleepiness when reading, riding as a passenger in a car or preforming other mundane tasks. But as I have said above, most of my tests were "inconclusive". My Doctor diagnosed as Narcolepsy and started me on Xyrem. Its been just over two months and I have been feeling the best I have in a while. I still get sleepy sometimes, however for the most part my symptoms have gone away. Now that brings us to today. My doctor ordered a blood test for narcolepsy and this has me worried. What if nothing shows up? Will he take me off the drug that has helped me actually remain awake when I should be? It feels like the tests are not really showing what I am going through and every inconclusive might as well be an accusation of a lie. It's just frustrating when it feel like no one believes you. Any opinions or help would be great, I am going through a tough time. Could all those tests be inconclusive and I still have it? Or am I trying to trick myself?

Posted on Feb 19, 2013, 8:12 PM

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Narcolepsy

by (no login)

There is always talk of "all the classic symptoms." Always a "typical case"
and yet very few cases will compare to each other.
45 years ago, there were no tests to prove N., no sleep centers. Just raised eyebrows. Very few Dr.'s could ask the right questions and come up with a diagnosis of N. For this reason most patients suffered for 15 to 20 years before being diagnosed with N.
It seems that very little has changed since they have come up with testing for N. None of the tests are absolute! They want to test, and retest and then they interpret the findings to their benefit.

If you continue to have problems with your diagnosis you need to find another Dr. Check out a new Dr. by finding out if he has had experience dealing with N. Find out if there is a support group for N. that meets in your area.
Talking with others that have suffered with some of the same problems can be of great help.

There is no answer for all of your questions. There is no cure. Some of your symptoms may change, or you may acquire new ones. You are in for the long haul, and you must deal with this one day at a time. It is scary, but I am 73 and I managed to raise three kids, and still have a loving wife of 34 years.
Every day that I can get out of bed and survive the day, "is a great day".
GEM, Oregon

Posted on Feb 20, 2013, 3:49 AM

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Thanks

by (no login)

Thank you very much for your quick reply! I am wondering, then, if it is worth my time and money to even go through with the blood test as I have been reading online and the general feelings toward this test are negative as well. Now that I have found something that works, I just don't want to lose it because of some questionable results, you know? I was very grateful to hear from you and thanks again.

Posted on Feb 20, 2013, 12:22 PM

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remember dr robert yoss?

by (Login doinmdarndest)

so you'd be a senior pwn here. most often i seem to be in company younger than my 51 yrs., it'd be good to have your perspective on past and present tx of n. and other hypersomnias of central origin.

i have a high dose simulant regimen, =270mg/d adderall. getting this amt. rx'ed was beyond difficult. i've spent thousands of hrs. going over n forum postings as far back as the '90's as thouroughly as i can to find cases similar to my own.

this has brought to my attention many posts telling of 'traditional' stimulant tx, such as amphetamines.

i note a distict decline in pwn tx'ed w/these options; with an ever present turnout, along w/ patients responding to the drug, of posts reflecting dissatisfaction w/nuvigil. most and more often in posts dated more recently, there has been no foray into traditional tx options on the part of an apparently growing number of younger and more recently dx'ed pwn, even as same patients express frustration/dissatisfaction w/the newer drug.

indeed, there are a few heartbreaking accounts of eds/fatigue suffering either where higher doses of stimulants may have been indicated, yet are not rx'ed.

in one a young wife laments her husband's finding her lazy and how it takes all the strength she can muster to get her children off to school. tx'ed w/adderall 60mg/d, she is told by her rx'er that no upwards titration of the med can benefit her, and that if this were done only undesirable side effects-and not increased response/wakefulness/normalcy.

this is a bald-faced lie. and the woman has no clue. i cannot know this person's name, much less be aware of medically legitimate contraindications to high dose stimulants as may easily be present in her, thus negating for her at least the new hope a more liberal dispensing of high dose stimulant rx'es could offer to other such pwn.

they are certianly out there, sir. today, my chosen goal, that of somehow bringing to light the fact that md's withold wakefulness promoting medicine from an indeterminate number of pwn so as to deprive them of normalcy/wakefulness is much too common in the halls of medicine today. the approprate authorities should reconvene and increase rx'ing guidelines such as, for example, the manufacturer's reccomended maximum mg/d amt for adderall from 60mg/d to 120-200mg/d. 60mg/d is for some pwn just way too little medicine. a pioneer in n. tx from the mayo clinic, dr robert yoss, wrote articles in the '50's that offer sensible rx'ing guidelines that have evidently been abandoned by the medical community. they make good sense, however, when tx'ing patients like me.

i am alone in the pursuit of this goal. my wish is to find others who tend to agree with me. something ought to be done, in my opinion. i am very grateful for my rx'er were it not for my having found this individual i would be caught in the grip of my eds/fatigue, symptoms so severe in me that to compose this or anything like this would not be possible for me to do. ever in life. period.

thank you for the time to read. any thoughts?

-doinmdarndest

Posted on Mar 25, 2013, 12:52 AM

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max. amts. stimulants normally rx'ed often=amts. too puny 4 a response in some pwn

by (no login)

i have a highly diminished pharmacological response to gen. adderall, the med my md tx's my n. symptoms w./ comparitively massive amts. are essential for me to benefit from my rx. my case is truly extreme.

300mg/d adderall is the most i have managed to obtain. i need at least 450mg/d. i spend many hours on these forums reading of other pwn tx'ed w/stimuants, learning whatever i can.

my main goal is to be fully tx'ed. along the way i have come across posts in which pwn are tx'ed w/stimulants for eds/fatigue and are no longer responding to them, or who never responded at all-at manufacturer's reccomended max. doseages, =60mg/d when rx'ing adderall, for example. in these cases patients are often told that they cannot be rx'ed stimulants in higher amts. than these. this info., when given them by their md's is accepted in good faith, beyond all doubt, by patients and it is FALSE. under standards of medical practice the rx'ing of stimulants is defined as 'judicious'. in other words md's are at liberty to rx ANY amt. they find medically justified. the recc. max. amts. are not rules-they are guidelines.

ALSO FALSE are advisements from md's that amt's in excess of these #'s will result only in bad side effects and that benefit from stimulants is had only in amts.
today, some pwn suffering eds/fatigue find they have an evidently inescapable/un-tx'able condition, bringing despair.

THE TRUTH IS that eds/fatigue can be tx'ed w/stimulants in higher doseages, and that w/o contraindications in a given patient for same nobody's going to lose their licence to practice medicine by rx'ing such amt.'s...............and that some eds/fatigue sufferers would be asymptomatic as a result. if nothing changes these same people will go unaware that wakefulness/normalcy is possible, right to their final moments. sad but true.

can anything be done? i challenge any/all in disagreement w/this to refute what i assert here in an intelligent debate. reply competently, w/all salient points of your reasoning clearly asserted. have them as irrefutable as can be so i can then refute them. go ahead. make my day.

be advised i, not my naysayers (should any exsist) am correct, medically and otherwise.

the manufacturer's reccommended maximum for adderall (for example) should be far higher, 120-200mg/d, w/cautionary for higher range.

i am not an md i am a construction laborer. my stimulant history, however, leaves me as experienced w/their effects as anyone on earth. w/o them my ability to do this or anything productive would not exsist. my eds/fatugue is severe.

in submitting this i have done what i can for now. perhaps in vain. doinmdarnest posts in all n. forums make the same claims as this one. their impact thus far = -0-ve i've been at this for years. i will likely be at it for years to come. THE TRUTH so help me God, will prevail and be known to all pwn and the medical community as well if there is anything i can do about it. now and in the future.

best wishes all.

-doinmdarndest



Posted on Feb 13, 2013, 1:09 AM

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Re: max. amts. stimulants normally rx'ed often=amts. too puny 4 a response in some pwn

by (no login)

No idea. Please, do not take my words personally, nor harshly.
If I'd known it was Narcolepsy when young, or even in my early 20's, 'perhaps' I'd of tried the stimulants.?
Cataplexy has been way more of a problem, yet I thought the tiredness was fatigue, which it becomes at or after a point.
Having many other health matters which some of may somehow relate directly to, or with, the Narcolepsy.
Or the effects of the Narcolepsy on the body/systems over my lifetime (32 years so far).
I choose rather, to drink coffee in the mornings and to take naps when I must; not to offend nor attack anyone, I'd rather not go down such a road of additional side effects than the ones I deal with anyways.
I also think you can do a lot through lifestyle and environment, balancing; as that is what it all comes down to. And, that is not at all to say such, stimulants, don't nor can't help some; it is to say very often 'a lot that relates' may be entirely overlooked within the 'only specific elements' often looked at.
The body is many systems and we all have predispositions to different diseases, and sensitivities. It's bad enough basically being a drink, without ever taking one - in terms of the toll on my body from just being Narcoleptic.
As Winston Churchill said: "You must sleep sometime between lunch and dinner... Take off your clothes and get into bed... You get two days in one. Well, at least one-and-a-half."

Posted on Feb 15, 2013, 5:07 PM

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Re: max. amts. stimulants normally rx'ed often=amts. too puny 4 a response in some pwn

by (Login doinmdarndest)

the meaning of my post may evidently be unclear. narcoleptix seems to have the impression i'm out to promote stimulants, and perhaps to impune alternatives to tx w/stimulant rx of eds/fatigue. this is likely my failing; what i suggest is in NOT in the interests of all pwn, this was probably under-emphasised. to each his/her own.

the only pwn w/anything to gain would be those, such as myself, who respond to one or more stimulants (or who could in cases where md's does not rx one or more of these meds, w/same indicated) who beleive the mg/d amt. is inadequate yet are denied increased doseaging.

raising the manufacturer's reccommended dose and similar guidelines is absolutely inconsequential to tx of eds/fatigue, except as is done w/stimulant rx in higher doses.

i wholeheartedly approve of narcoleptic's chosen eds/fatigue tx/mgmt. option. i would find highly objectionable anything suggesting incorrectness in this personal choice, or in the exsistence in society of the right for each of us to make such choices for ourselves as adults as we each see fit. this has been compromised in our times; it is gone altogether when the choice is w/in the circumspect of n. symptom tx options and high/increased dose stimulant rx is one option among those indicated.

speaking only for myself, i prefer the stimulants in my system imperfect as this tx is...and yes, it is imperfect.

i can feel the chemichals in me, and at times have had to steel my mind against amphetamine induced tendencies toward unsound judgement, and regimenting my acts according to what is logical by having predetermined the defenition of what is normal to do in life so as to succeed in ignoring any amphetamine induced anxiety,paranoia, etc. i have experienced w/same, or will. i should note that over time/years these effects diminish and eventually are gone in my case. i find DISCIPLINE essential to my having accomplished this, and freely admit my behavior at times has been impacted by the side effects of my med. please allow me to illustrate how life is w/o stimulants in our blood at therapeutic levels for pwn w/eds/fatigue symptoms as severe as my own:


back when i smoked, i found myself sitting w/unlit match used to light a cigarette after i smoked it. this was from lacking the energy to cast it down, it happened on several occasions. if i must dress myself unmedicated i omit socks/underwear even a shirt on cold days. indeed, w/o stimulants my body/brain defaults to as few motions as can be for anything i do. and there is so much i can't do at all such as hold my job or even talk to my wife.

yet for me and for an indeterminate # of pwn any/all of this is corrected soundly by amphetamines, ONLY if rx'ed in sufficient amounts. let me/us be rid of the experience of being told in so many words by our md's "there is nothing more that can be done" when we ask that they titrate up.....w/our knowing the word "can" takes the place of the correct word for what is meant, "WILL" ...it is positively galling, let's (we who prefer our stimulants be rx'ed in higher doses) be rid of it w/the UTMOST DISPATCH. -best wishes, all.

Posted on Feb 15, 2013, 9:33 PM

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corrections to preceding post

by (Login doinmdarndest)

the preceding post had mistakes #1: "narcoplexic" is referred to in error as "narcoleptics" #2: 2nd to last paragraph began incorrectly. correctness= "back when i smoked i found myself sitting w/unlit match used to light a cigarrette still in between my thumb and forefinger after i smoked it. this was from lacking the energy to cast it down after blowing it out."

my apologies good copy is so very difficult for me to produce.

Posted on Feb 15, 2013, 10:12 PM

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Re: corrections to preceding post

by (no login)

Absolutely agree.
We should each be able to treat ourselves, in the manner which works for each of us; as many similarities as there are, there are also many differences.
No people should be treated like babies and/or batteries, nor as tools. There may be circumstances like infancy and childhood were, to a point such is okay.
For some PWN, the N is so much more than a 'sleep disorder' alone.
Cataplexy causes me to collapse from silly-ness like being smiled at, or asked for change, on the street unexpectedly.

Within the med realm (and unfortunately many other realms), something is very broken; it seems.
There are massive disconnects, and hypocrisies, all over the place.
Abuse is rampant, on so many separate levels; balance is required yet is impossible when 'unconsciousness versus consciousness' -seemingly- is the standard, norm.

Could you imagine a Narcoleptic on MMJ? And that's no joke; at such a statement, many will chuckle and many will not.

Take a quote from the infamous .... Mr. Rumsfeld:
There are known knowns; there are things we know that we know.
There are known unknowns; that is to say there are things that, we now know we don't know.
But there are also unknown unknowns there are things we do not know we don't know.

In my own experiences: A step back, has been actually a large step, forwards!

Hope that I've not hit a nerve in my, disconnected response/s.
Best of luck, to all.

Posted on Feb 16, 2013, 1:25 PM

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you seem pretty hip. any how-to insights for my advocacy quest?

by (Login doinmdarndest)

i'm out to have an impact on the status of medicine itself. i feel certian this is possible.

my activity in many/all n. forums is under same name. check it out, if you wish.

are you into subverting the dominant paradigm/bucking the medical establishment/seeing a change in n. tx? i am and volounteer help will likely be essential.

i've emailed the nih w/my concerns thier office of public laisons sent a lengthy reply w/links to vast databases. i lack internet skill. do you by any chance have good skills online?

this is open to any-all as may happen to read. i need an internet assistant....anyone willing to help out may email me [email protected]

right on, narcoplexic....stimulant abuse and eds/fatigue tx w/ stimulants are NOT the same thing, and in my humble opinion it's high time for a change. thank you for your intelligent courteous replies.

Posted on Feb 16, 2013, 11:50 PM

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Re: you seem pretty hip. any how-to insights for my advocacy quest?

by (Login doinmdarndest)



Posted on Feb 17, 2013, 12:05 AM

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Nuvigil at cheap prices

by (no login)

Does anyone have a legit resource that I can buy either nuvigil, provigil, mondafinil, at cheap prices without getting ripped off.
I have used a india pharmacy, but i am looking for a place with cheaper prices. I don't have insurance so i have to pay full price for the generics. Where is there a online buying resource that i don't need a script. To buy

Posted on Jan 10, 2013, 11:48 PM

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Nuvigil, provigil where to buy cheap online, quality

by (no login)

I am looking for cheap, quality online pharmacy to buy nuvigil, provigil, modafinil, without worrying about getting ripped off. I prefer not to have to get a script if possible. But, not out of the question. Just much easier

Posted on Jan 10, 2013, 11:53 PM

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re: online pharmacies

by Pam (no login)

Most on-line pharmacies have inferior drugs, cheap or not. If you do not have insurance, cephalon the company that make provigil can help you. What's the problem with getting a RX, are you DX with narcolepsy?


Posted on Jan 11, 2013, 12:02 AM

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Rx problem

by (no login)

Thanks,
What is nuvigil called in Canada? How are there prices compared to others? As far as the rx i hate going through the cap you have to deal with to see the doctor. You make an appointment for say, 2:00 p.m. They finally call you back after making you sit for 45-1 1/2 past your appointment time. Only to sit in the exam room for another 30 minutes. Then when the Dr. Finally does arrive it is like a she/he is in the olympic race. To get out. I usually leave if they don't call me after 10 minutes after my scheduled appointment time without saying anything to the secretary. If a doctor has no more respect for everyone there paying him, than to operate as if their business as if they are an exception to the rule when it comes to being prompt to their customers. Mc D's doesn't do it, and neither does any other business. People will raise mortal hell at most businesses if they arrived at an appointment , and had to wait the average time you do at a Dr. Office. I saw the doc. I have been diagnosed with NARQ. I take my one pill of nuvigil a day and life is good. I am an adult, i don't need a doctor to tell me over and over to do the something every month. Ive been doing it for years now, i know the drill. I just want a trustworthy pharmacy, at cheap prices, to get my medication. For 42 months now i get the same thing i will get for the next 36 months, take one of these a day and see me in 2 months Over and over. I don't have the time or the money i spend on and at the doctors office for a magic piece of paper.
Thanks,
Gary

Posted on Jan 11, 2013, 12:27 AM

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re: RX problem

by Pam (no login)

I totally get where you are coming from sitting in a doctors office for sometimes hours to be seen. Been there! The Mayo Clinic in AZ is the only place I've ever been that when your appt is at a certain time, you are called back at that exact time and the doctor is already in the room waiting for you. You get an hour of time, so there is no rushing you or the doc. Be that as it may, you can have your doctor write you for a year RX for nuvigil. My rx drug coverage is through Medco (by mail). The only thing is they won't give you 90 days of nuvigil, just the thirty. If you could ask the doc to have the rx ready to pick up on a certain day each month, without seeing him, that sometimes works. I would assume that Nuvigil is known by the same in Canada. It is a label drug, no generic at this point in time. I don't take any drugs at this point, I'm retired and just stay tired, take naps 2-3 times a day. I was on nuvigil which I do like better than provigil, it is longer lasting. Good luck.

Posted on Jan 11, 2013, 3:34 AM

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Re: Nuvigil at cheap prices

by (Login AliceRamirez)

Tryhttp://www.internationaldrugmart.com/. All Generic medications are available in a very cheap price.

Posted on Jan 30, 2013, 4:40 AM

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my email

by Melody (no login)

My email was hacked again...and a bunch of spam sent to people in my address book. I have closed that account completely (melodybusby at yahoo) so if any of you still have it, you can delete it. Any time you want to email me use melodylane57 at yahoo. By the way, I just found that yahoo has a way to see if anyone has signed into your mail account. If you go to your account info, look thru all the things they have listed and one says something like View your recent sign in activity. That will show you when you've signed in, from your browser or other, and what you signed in to...such as mail. Mine showed that last night at 11:11 someone from the United Arab Emirates signed into my mail account. Anyway...that account is gone. Hope you all are looking forward to a Happy New Year. I will moving in a few weeks so will be off and on here until things get hooked up. Take care all happy.gif.

Melody

Posted on Jan 6, 2013, 1:15 PM

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Narcolepsy E book..today only FREE

by Melody (Premier Login cataplexic)
Forum Owner

Julie Flygare's new book "Wide Awake and Dreaming" is being offered at Amazon in it's e-book form today for free all day. They offer a free Kindle app to use on your computer so you can read it..or download the Kindle app for your tablet, iPhone, etc by going to your app store. I've read the first few pages and am very impressed by her writing skills and actually can't wait to read the rest. I hope you're able to enjoy it. Happy New Year, Everyone!

Posted on Jan 1, 2013, 1:05 PM

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Enjoy the Holiday Spirit :)

by Melody (no login)

Merry Christmas, Everyone, with hopes for a lovely, eye opening New Year happy.gif.

Posted on Dec 23, 2012, 9:10 AM

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Enjoy the Holiday Spirit

by (no login)

The greatest gift we can give or receive,

Another Year with those we Love, and friends we cherish!

GEM, Oregon

Posted on Dec 23, 2012, 9:35 AM

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Merry Christmas and happy holidays!

by Meghan (no login)

I hope that the new year brings new research and technology so that maybe our quality of life can continue to improve!

I find that the winter months are the hardest, so I am looking forward to a spring and summer where I am being treated!

Posted on Dec 28, 2012, 6:09 AM

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