Recently was diagnosed with Narcolepsy. WAs diagnosed with ADD and Sleep Apnea concurrently in '96. Have tried daytime stimulants for combined ADD and narcolepsy treatment. However, my short term memory was really hurting. My ability to multitask was really not doing well. Ability to read and concentrate was hurting. I was also very frustrated and anxious due to all the things that were not getting done. I was really not enjoying life. That was my typical state, although I kept a terrific positive attitude 90% of the time. I have kids and could not afford to not be positive, it got me from one day to the next!

Recently, I agreed to a trial prescription of GHB, a highly regulated drug, more infamously known for it's use as a date-rape drug, than for its positive use in medicine for treatment of narcolepsy. Frankly, with all the negative media about it, I was damn scared to try it. After stalling for 4 months, I finally tried it.

Results, on 4th day, I notice my inability to tell time is now receding into the past tense; ie, I can tell time as it passes. The doctor explained to me this ability to tell time is because I am not passing in and out of mental states that are partially resembling sleep states (although no one, including me, would be able to detect that). I am also calmer and feeling more satisified with my work each day. My memory is working. I can remember what I was working on from one minute to the next without forgetting what I was doing or thinking. I have been more jovial and more social. I can tell that this is working for me, without any stimulant being used. Oh, by the way, I have not taken my adderral for 4 days either, and actually have been able to concentrate on the tasks at hand. Normally I have to take the Adderal to concentrate.

Conclusion: The dr was right, that many of my ADD symptoms would dissapear when I allowed him to correct my narcolepsy sleep disorder. I guess the next thing I will have to determine is whether a dr would still diagnose me with ADD? I have always contended that ADD is a comprehensive diagnosis covering a lot of possible causes for very frustrating but similar symptoms of not being able to focus. I have been getting ADD treatment for 8 years, and have participated in ADD discussions in a manner consistent with having the experience of "being" ADD. ADD drugs like Stratera and Adderal and Ritilin and Welbutrin, have all helped me. However, I just kept complaining they didnt help enough.

Conclusion 2: I think we have to consider the possibility that those ADDers, who have sleeping problems, like staying up all night, or sleep apnea, or alpha wave intrusion, delta wave intrusion, etc, may be treated by treating the sleep disorder. In 1996 I was diagnosed and treated for Sleep Apnea, but not for Narcolepsy; and this allowed me to return to college and finish college! But I kept feeling there was something missing, and my sleep patterns, inability to sense time, classic ADD symptoms, left me searching for more answers, like most ADDers. Well, surely, this is one more answer for some ADDers.

Conslusion 3: I keep my fingers crossed it keeps working. They say to get an effect, it could take 4 days to 2 weeks, so I am also hoping the positive effect keeps accelerating. This is only day 4 so far.

Conclusion 4: My wife noticed I seem happier and calmer and more jovial! That is so great to hear!!! And its true.

Jonathan

That's great Jonathan! Welcome back to the world of the awake. Sleep deprivation is the pits. Are you able to just take it once at bed time & sleep all night?

if its safe and it works roll with id dude. Youve got everything to loose and somthing to gain, may as well sit back, enjoy the ride and keep 2 fingers crossed and one eye trained on how your meds are working at all times. It will all work out in the end. If its not right for you its not like anything has failed, just wasnt the stuff for you, if its all peachy then great, you have foundwhat you need. Just, err, dont tell too many people your loaded with date-rape gear, might get a brick through your widow.

Shinobi

You are amazingly correct, not suppose to let anyone know about it. I figured it would be ok on here, since no one knows where i live! But in day to day life, I'm not telling anyone.

Thanks for the sober reminder!

So far so good.

Jonathan

Paulbf

Yes, well, kind of. I take it twice a night.
I actually set an alarm and retake it 4 hrs after i take it, because it goes through the system that quickly. I sleep like a baby on it, and when i wake there does not seem to be any after effect. \

I noticed today i was having a lot of fun with my 7 yr old. She is really playful, but in being sleepy i have maybe ignored her playfulness, rather than enjoying it as much as i could. Today i was surprised to see i was actually appreciating her playfulness and playing back more with joy rather than feeling like it was draining my energy. So, this might improve my life on several fronts.

Thanks for the welcome back Paul. Good to hear from you too!

Jonathan

just for the record, your ip adress could be obtained from many parts of this site very easilY. This could then be used to track your long and lat cords within the physical world wich could then bu used to pin point your location. Those who are expirianced at this will know its very easy to get a bulls eye trace for most web users.

:P

delete delete

Out of curiosity, what I know of ghb is it's a mixture of amino acids, that are supposed to make your muscles repair theirselves faster, I have done it in the past and it made me feel good. What is it about ghb that is supposed to help add symptoms?

I dont know alot about it. It used to be over the counter, non-prescription. I do know that the dr told me my misplaced sense of time was a symptom of narcolepsy, even though i don't just fall asleep while talking. Apparently there are different forms of narcolepsy symptoms, and one symptom is that you can be wide awake even though a part of your brain goes off line and sleeps to catch up on delta sleep or rem sleep it didnt get. In that process, functions like telling time go out the window, since normal time telling is not relevant to the brain when it is sleeping. Or so it was explained to me. By taking the ghb, normal sleep patterns take place in the brain, and then in the day time the brain stays online more, and thus time telling is more consistent.

So far for me, this has been true. Strange, huh!

Jon

Wow, this stuff is working, better than any ADD drug I have ever taken in 9 years since diagnosis.

Now, I have to admit, the one drug that did wonders was Stratterra, but its ability to help me declined over a few months and then became nill, and it was also compromising the health of my prostate, not a good idea, so I quite Straterra.

However, this drug, GHB, has no side effects, and is in and out of my system fast, and has no addiction, and has a tremendous effect on my ability to think clearly, remember things, do tasks I normally hate doing, get motivated to work hard, talk intelligibly, communicate - really communicate, etc, etc, etc.

Today is probably marking the one week since taking GHB. Today I got more work done today than ever. And I communicated better than ever with my family, like never before. I'm not a bad communicator to start with, but truly, today I exceeded myself for sure. My insights into each person were sharper, I knew what I was trying to say, and why, and instead of just saying it, I knew the insights I wanted others to have. This is far more together than I ususally am. Usually I get frustrated because I want others to understand a point, but I don't have enough info to really influence them. Today I was so on target, had a family meeting, influenced even the toughest of them all, my wife, you know, the boss! She was influenced in a way that I have never been able to really influence her, I broked through barriers that normally stop me, and therefore stop us, from achieving our goals for the day. My children jumped on board on the family project of really fixing up the house, and we accomplished tons today, through sheer hard work and team work.

The end result was that we got a lot done today, and we were on track. I did not take a stimulant this week, just the GHB at bedtime and once more in the middle of the night. That is it. By the time i wake in the morning, it is already metabolized out of my system, and I begin my day by opening my eyes feeling well rested. I get my coffee, and eat a little and start my day. The day feels normal in the beginning, except in my mind I have a clearer concept of what is on my mind, what day of the week it is, what I intend to get done that day. I don't wake up hyper, I wake up slow, and need my coffee. I don't get hyper in the day like taking the stimulants. I simply cruise along throught the day. But I don't lose track of time, and I don't get off task.

Well, this is a miracle, and I hope for myself, that it keeps on working. The doctor told me there is no adjustment to the drug, so I won't have to keep increasing the dose. He also told me in his experience, that he thought most of my ADD symptoms would dissappear after I take this drug. I was very skeptical. I have to admit though, i think he might be correct. Would that be a miracle? He also said i can take this drug for the rest of my life, with no known side effects.

One nice thing too, that i did not expect, is my appetate, which is normally voracious and constant, subsided to normal. I eat normal now, and have no desire to double stuff multiple portions of food. Hopefully this will bring me back down to a normal weight too. I don't feel nausious nor do I feel "not hungry", I just don't feel like I have to eat constantly in order to get energy to stay awake.

Okj, enough for today. I'll keep you all posted if this sounds interesting to you!

Jonathan

That's great Jonathon. Are we going to have to kick you out of here now that you don't have ADHD? < grin >
has no side effects, and is in and out of my system fast, and has no addiction
Well it was once thought to not be addictive but there are some people who get really hooked gradually working up to taking it every 2 hours 24/7, built up tolerance needing more & more & describe pretty bad withdrawals. But you won't have that option with a prescription and it is highly illegal now so very hard to obtain. But at therapeutic doses, I doubt tolerance will be an issue at all.

Jonathan, I had no idea this stuff had an "upside". I read quite a bit about it last night and this morning. It sounds like a good bet for treatment.
Keep us posted.

I hope not to be kicked out for getting my act together! lol

Paul... I hope its not addictive, the drug company told me it was not addcitive, and the dr told me the same. However, you never know. I'm not going to worry about it for now. The treatment is working; I'm productive in the daytime. It probably does have to do with therapeutic doses.

Itschaotic,

It is odd that this has an upside, indeed. It took me a long time to try the dr's recommendation of this medicine...but I think he was right.

Thanks for keeping tabs on my treatment guys! I appreciated the support!

Jonathan

I hope not to be kicked out for getting my act together! lol

Paul... I hope its not addictive, the drug company told me it was not addcitive, and the dr told me the same. However, you never know. I'm not going to worry about it for now. The treatment is working; I'm productive in the daytime. It probably does have to do with therapeutic doses.

Itschaotic,

It is odd that this has an upside, indeed. It took me a long time to try the dr's recommendation of this medicine...but I think he was right.

Thanks for keeping tabs on my treatment guys! I appreciated the support!

Jonathan

I am very interested to see how you are doing. I also have narcolepsy like you do ( not the kind where you just fall asleep mid sentence) and NEVER get a full nights sleep. I get sleep paralasys and dream constantly.
I was recently diagnosed with ADD and given strattera. Immediatly I noticed prostate problems. And i didnt help my sleep at all.
Nothin help me sleep, I mean nothing. But, many years ago when GHB was legal I tried it once, and 4 hours later I woke up so refreshed that I couldnt believe the sleep I had gotten.
I am interested to see how I can geta prescription for this. Should I see a specialist? Or talk to my psychiatrist? Hope you still hang around here :)

I am very interested to see how you are doing. I also have narcolepsy like you do ( not the kind where you just fall asleep mid sentence) and NEVER get a full nights sleep. I get sleep paralasys and dream constantly.
I was recently diagnosed with ADD and given strattera. Immediatly I noticed prostate problems. And i didnt help my sleep at all.
Nothin help me sleep, I mean nothing. But, many years ago when GHB was legal I tried it once, and 4 hours later I woke up so refreshed that I couldnt believe the sleep I had gotten.
I am interested to see how I can geta prescription for this. Should I see a specialist? Or talk to my psychiatrist? Hope you still hang around here :)


The sleep paralysis is a MAJOR MAJOR indicator of GETTING the permission to use GHB legally. From what you state, it sounds like you might have the same condition i have, and GHB might be the treatment. My ADD symptoms subsided considerably with the GHB treatment, but I still treat the ADD as well, more or less on a PRN basis, with Adderal. There are only a few drs aloud to prescribe GHB, who know how to determine if you need it and what level is therapeutic.

Go to XYREM on the internet and inquire where you can reaach a dr who can test you and treat you.

or call 866-XYREM-88 AND ASK QUESTIONS

Jon

im pleased for you. sounds like you found sactly what you were looking for / needed :D

It seems like it helped a lot.
Thank you Shinobi

The sleep paralysis is a MAJOR MAJOR indicator of GETTING the permission to use GHB legally. From what you state, it sounds like you might have the same condition i have, and GHB might be the treatment. My ADD symptoms subsided considerably with the GHB treatment, but I still treat the ADD as well, more or less on a PRN basis, with Adderal. There are only a few drs aloud to prescribe GHB, who know how to determine if you need it and what level is therapeutic.

Go to XYREM on the internet and inquire where you can reaach a dr who can test you and treat you.

or call 866-XYREM-88 AND ASK QUESTIONS

Jon
Thanks for your reply.
I have an appoitment wit ha sleep doctor this week. I thought treatment for the sleep paralasis was a lost cause after all the other meds didnt work. But we'll see if the doctor can help out.
It's been pretty bad recently, the paralasis and the terrible hallucinations (and audio and visual) that come with it. I get to a point where Im afraid to try to go to sleep. It's been a few years since I've been to a sleep doctor so hopefull things will get better. Thanks for your time. :)

Good 4u!
Taking ACTION!
Good luck at the doc. Things have changed probably since the last time you went. There is more available. I have been told that XYREM was a major breakthrough in sleep medicine and is the ONLY sleep medication of its kind. I heard today that the pharm co is also suppose to be working on a new medication that will treat Chronic Fatigue syndrome as well.

Take care and update!

Jon

Good 4u!
Taking ACTION!
Good luck at the doc. Things have changed probably since the last time you went. There is more available. I have been told that XYREM was a major breakthrough in sleep medicine and is the ONLY sleep medication of its kind. I heard today that the pharm co is also suppose to be working on a new medication that will treat Chronic Fatigue syndrome as well.

Take care and update!

Jon
Hi Jon,
My sleeping has been getting worse latley. So after a couple doctor visits and sleep study results, he is prescribing me XYREM. I am VERY happy about this as I think it will help me sleep signifigantly, which I think will improve my quality of life.
I didnt even bring up the medication with him on my visits, but he told me all about it and said It should help. Thanks for your original post, without it I would have never thought of going back to the sleep doctor :)

vertigoa (member.php?u=6056) I'll be interested in hearing about your progess. Please keep us posted on your experiences.

Hi Jon,
My sleeping has been getting worse latley. So after a couple doctor visits and sleep study results, he is prescribing me XYREM. I am VERY happy about this as I think it will help me sleep signifigantly, which I think will improve my quality of life.
I didnt even bring up the medication with him on my visits, but he told me all about it and said It should help. Thanks for your original post, without it I would have never thought of going back to the sleep doctor :)

Hi Vertigo

I'm glad to know things changed enough since your last visit, that you got some solutions now that were not available before. Again, XYREM really works well for me. You are really welcome and i'm glad this forum works. It goes 2- ways, as i learn something in here from members everytime i open this site.

Let us know how you experience the XYREM....

Thanks

Jonathan