14 replies to this topic

[doinmdarndest]

 fellow pwn:

 

in the '50 md's tx'ing n. symptoms such as eds/fatigue rx'ed the amphetamines far more readily than they do today.  the mg/d amts rx'ed today of same are virtually always tiny-if they are rx'ed at all if no response to nuvigilis had in n. patients w/eds/fatigue.  back then if your meds didn't have you wakeful enough to read or watch tv in the evening your md would normally titrate up same, if they gave you insomnia he or she would titrate down, or stop same depending on the individual.

 

now pwn who would benefit from same rx'ing(little do so many know they could) practices in the amphetamine department go untreated.

 

what happened back then?  did a few pwn w/amphetamine rx prove unable to handle stimulants, so now the rest of us in whom amphetamines are indicated to tx eds/fatigue, especially in higher doses, are denied tx for our symptoms?  regardless of how strongly amphetamine regime is indicated? and if existing such regime is too low for response in patients, are higher doses not rx'ed even w/existing regime well tolerated in patients w/partial response?  and if we are not aware of these indications are we made aware, or do we go on enduring eds/fatigue beleiving falsely that there is no tx exept nuvigil and puny-dose traditional stimulants when we do not respond to these tx options?

 

what could possibly be right about that, if so?  ...and here's the kicker-as a group, we lack the energy to stand up for our tx and our well-being and our wakefulness.  where will this take us?

 

oh, well...sweet dreams, all.  anybody besides me dissatisfied w/the status quo of n. tx today?

 

 

 

 

[DeathRabbit]

The problem is our overbearing federal government and the way it wants to regulate what people put in their bodies. Doctors are loathe to prescribe stimulants because they are so tightly controlled and if someone does abuse them, then it could blow back on them and cause them legal issues.

[DeathRabbit]

That being said, in no way are stimulants a cure. They pick you up temporarily, but it's a fake wakefulness that doesnt feel right, and when they wear off, they dump you even lower than before. After prolonged use, one eventually has to take them just to maintain a baseline level of wakefulness, one would have had naturally before even starting them. I've been off my stimmies for 3 weeks now and I feel better than I have in a year.

[Megssosleepy]

That being said, in no way are stimulants a cure. They pick you up temporarily, but it's a fake wakefulness that doesnt feel right, and when they wear off, they dump you even lower than before. After prolonged use, one eventually has to take them just to maintain a baseline level of wakefulness, one would have had naturally before even starting them. I've been off my stimmies for 3 weeks now and I feel better than I have in a year.

 

I agree, I try not to take mine anymore either unless I absolutely have too.  One thing that I noticed is the side effects never go away completely even if I haven't taken any in a month!  My jaw seems to be messed up permanently!  Id rather put up with heavy fog then feel the way the stimmies make me feel.

[Gemini730]

_{So if you guys are not taking them, what are you doing?  I'm not crazy about how they make me feel, but it's most certainly better then not being able to function on a day to day basis.  I'm curious how you're getting by......}

[sk8aplexy]

Coffee in the morning (12-16oz) each and every morning.

Smoothie and/or some tea in the afternoon and/or evening.

Living as stress free, calm and gently, as possible; and eating as clean of food by buying organic, while also avoiding GMO and processed foods/drink, as much as possible.

Cooking 90%+ of what I eat.

Exercising a couple times a week and doing daily stretching, yoga like / meditating during such.

 

I don't do the common racing and scrambling, that most all people do.

I don't get involved with people much, as there's too many difficulties and it's just easier (in the grand balancing) to not participate in, so much like most attempt to (be that even a career alone, not to mention relationships/partner)...

That helps tremendously, but I still have the stresses which are money/financial based and I'm for the most part a hermit.

Such, can be rough.

A loner that lives in a transparent bubble, to attempt an avoid all the common troubles.

 

I also feel that if I attempted taking any of the common stimulants, my heart or some part of my brain, would perhaps explode. 

There's other aspects too, like the long term effect/s of being on such meds (it's bad enough being comparable to an alcoholic, by just having Narcolepsy, as far as physical effect/s of the disease over time), the tolerance and damage which just builds with those meds is real and known.  Maybe that's been recognized more so, and has to do with the doctors limiting; yet, that's a shot in the dark.

Please people, do not take what I'm saying in any personal attack manner, that is not my intent.

 

Also, I like feeling that 'point A' will remain in reach. Point A being already a plethora of matters which Narcolepsy with Cataplexy is only one, element of.   It alone, has further reaching elements with the Cataplexy and stigmas around it.  Seriously, also with migraines, there is another very similar sort of stigmas and/or difficulties, to do with socializing and being dependable.  Maybe many of you can relate - here's a link : http://www.newswise....jefferson-study

 

To at least, if possibly reachable, return to 'point A' after perhaps finding myself at any 'point B,' or further like 'point C.' 

An example being.  Just trying to follow the Minimal-Moderate Idiopathic Central Sleep Apnea treatment, being a VPAP ASV sleep breathing device, for the 9 months that I did; I was at what I thought to be 'point B' perhaps (collapsing 5-15 times each day from Cataplexy, point A was more like 5-10 each 6 months and I've perhaps returned to point A now around a year and some months of not using such -as doctors eventually, half willingly, acknowledged yet were clearly upfront about getting off...).

 

Perhaps much of that seemed off topic, but there are multiple aspects that keep me how I be; be it actually more of perhaps 'point I' of points A-Z that I will go through, I take it all day to day.

 

Best of luck, hope I didn't bother anyone with my words.

Please don't copy and paste this below.  I no like that.

[DeathRabbit]

_{So if you guys are not taking them, what are you doing?  I'm not crazy about how they make me feel, but it's most certainly better then not being able to function on a day to day basis.  I'm curious how you're getting by......}

I just try to get the best sleep I can for 9 hours each night. Exercise helps too, I believe. Also, be sure to eat enough, because the low blood sugar will definitely compund any sleepiness. Finally, if you do all that and you are still having a bad day, then pop the stimulant. If used sparingly, they actually have a much mroe therapeutic effect. It just takes incredible restraint to do so. I recommended this in another thread, but if you need something on a daily basis, I would recommend you give one of the vigils a try.

[Megssosleepy]

I just try to get the best sleep I can for 9 hours each night. Exercise helps too, I believe. Also, be sure to eat enough, because the low blood sugar will definitely compund any sleepiness. Finally, if you do all that and you are still having a bad day, then pop the stimulant. If used sparingly, they actually have a much mroe therapeutic effect. It just takes incredible restraint to do so. I recommended this in another thread, but if you need something on a daily basis, I would recommend you give one of the vigils a try.

 

I do the same.  I do however drink coffee and just started drinking a can of soda after that, partially for the calories and partially for the Caffeine!

 

I moved closer to my job so I am only driving 10 mins at a time (this was huge for me and not taking meds).  Also, I graduated from college so now I just have my full time job, before I full time in school and work!

 

I have been feeling under the weather so I have really been struggling, but I just know how terrible Adderall and every other stimulant makes me feel so I fight it.  I have been having a hard time with my eyes just glassing over  

 

If I wasnt on Xyrem there is no way I would make it through the day, I really wish it helped more, but I am thankful I am not falling asleep all over the place.

 

And when I do HAVE to take 5mg it really works and that means a lot to me as well!  In January I think I only took about 15mg total!! Thats something I can look back on and be proud of!

[Gemini730]

I just try to get the best sleep I can for 9 hours each night. Exercise helps too, I believe. Also, be sure to eat enough, because the low blood sugar will definitely compund any sleepiness. Finally, if you do all that and you are still having a bad day, then pop the stimulant. If used sparingly, they actually have a much mroe therapeutic effect. It just takes incredible restraint to do so. I recommended this in another thread, but if you need something on a daily basis, I would recommend you give one of the vigils a try.

Thanks for the information, I appreciate the time.  Unfortunately, my sleep has always been a huge problem (common with N. as I've come to understand).  I've spent so many years and so much time trying to "fix" my sleep in order to function  day to day, that the realization that it was N. was really a huge revelation, that better night time sleep will obviously be a plus, but will never fully "cure" the EDS.  The only reason I was directed to a sleep study was bc I finally told my MD that if I couldn't get better sleep, than could he give me something that would just make me more alert/awake during the day.  I've also tried the vigils and they worked for a short time, then the effectiveness started wearing off after about 4 hours and I would immediately need to sleep.  I've actually found fewer side effects on Adderall than the vigils.  Managine anything chronic is always difficult.....thanks again.

[doinmdarndest]

CORRECTION: tag 'is a cure witheld today?' should be
'is tx witheld today?' as we know there is no cure for n. yet tx of symptoms is sometimes possible.

sometimes i err when i compose. it's not my strong suit

-doinmdarndest

[DeathRabbit]

I think many treatments are probably withheld, due to our regulatory overlords and the nature of big pharma business. I would like to know what a low dosage of quality controlled medical MJ would do for PWN, but being in Alabama I'll never find that out. And yes I know I could prolly circumvent the law but smoking something u got from a dude on the street corner is hardly a controlled experiment. There's also the Orexin agonist spray that hasn't been developed simply b/c there's not a large enough market. In general the FDA/DEA harm honest people more than criminals and unscrupulous businessmen. I would like to see the DEA eliminated and the FDA to only exist in an advisory/testing capacity, rather than being the end all be all for US pharma. But that'll happen when Hell freezes over or Led Zeppelin 5 releases.

[Megssosleepy]

I think many treatments are probably withheld, due to our regulatory overlords and the nature of big pharma business. I would like to know what a low dosage of quality controlled medical MJ would do for PWN, but being in Alabama I'll never find that out. And yes I know I could prolly circumvent the law but smoking something u got from a dude on the street corner is hardly a controlled experiment. There's also the Orexin agonist spray that hasn't been developed simply b/c there's not a large enough market. In general the FDA/DEA harm honest people more than criminals and unscrupulous businessmen. I would like to see the DEA eliminated and the FDA to only exist in an advisory/testing capacity, rather than being the end all be all for US pharma. But that'll happen when Hell freezes over or Led Zeppelin 5 releases.

 

Like!

 

I am hoping that once the patient on Xyrem expires they will produce the spray.  The Pharmies know they can charge just as much for it as they do Xyrem, because to them its not about how much it cost to produce its just how much people need it.  

 

As far as the MJ goes there is a really good post on here about different strands that could be used for 1. waking up and 2. getting a good nights rest.  But, you are correct that would really only be possible if we could get Pharma grade... I too am below the Mason Dixon line, not going to happen

[sk8aplexy]

Like!  

 

DeathRabbit, you are on-to something... 

Many may chuckle at 'the thought' of a (perhaps) stoned Narcoleptic; and many will not...

 

What is within my mind has to do with these following statements:

-As similar as the symptoms of Narcolepsy and also Cataplexy (that is, perhaps even separately) are, and/or may be, for each person with Narcolepsy; each person with Narcolepsy has vast differences of, even each and every, symptom or symptom/s.
-We are each, and all, effected differently by each and every substance.  It is amazing how broad such is; not, can be. 

-Words are only words, and everything is continually evolving and/or changing (especially today, faster and faster, it seems); languages ring and are always interpreted differently by whomever person, hears and interprets them.  People must recognize and accord to such evolution of words and/or wording alone; as to not, can have broad consequences.

 

The head of Stanford Center for Narcolepsy, world re-known Narcolepsy Doctor, attended an 'update event' last year, which I managed to attend. 

He spoke of an Orexin injection, which goes directly into the Cerebral Spinal Fluid -Spinal Cord or Brain- (I believe it was done only in mice); and it worked maraculously for all of the symptoms, yet only lasted a short while.

So such was not a candidate for proceeding, as daily or weekly injections into your Spinal Cord or Brain, is not at all safe...

 

Time will tell.

[DeathRabbit]

I think the next step in bioengineering is to make a safe portal to the spinal cord. Something like the jack in the Matrix where medications could be administered safely and efficiently. It may sound like sci-fi mumbo jumbo, but so did a lot of stuff at one point in time. This would be so advantageous for a myriad number ailments.

Like!  

 

DeathRabbit, you are on-to something... 

Many may chuckle at 'the thought' of a (perhaps) stoned Narcoleptic; and many will not...

 

What is within my mind has to do with these following statements:

-As similar as the symptoms of Narcolepsy and also Cataplexy (that is, perhaps even separately) are, and/or may be, for each person with Narcolepsy; each person with Narcolepsy has vast differences of, even each and every, symptom or symptom/s.
-We are each, and all, effected differently by each and every substance.  It is amazing how broad such is; not, can be. 

-Words are only words, and everything is continually evolving and/or changing (especially today, faster and faster, it seems); languages ring and are always interpreted differently by whomever person, hears and interprets them.  People must recognize and accord to such evolution of words and/or wording alone; as to not, can have broad consequences.

 

The head of Stanford Center for Narcolepsy, world re-known Narcolepsy Doctor, attended an 'update event' last year, which I managed to attend. 

He spoke of an Orexin injection, which goes directly into the Cerebral Spinal Fluid -Spinal Cord or Brain- (I believe it was done only in mice); and it worked maraculously for all of the symptoms, yet only lasted a short while.

So such was not a candidate for proceeding, as daily or weekly injections into your Spinal Cord or Brain, is not at all safe...

 

Time will tell.

[MINItron]

I think the next step in bioengineering is to make a safe portal to the spinal cord. Something like the jack in the Matrix where medications could be administered safely and efficiently. It may sound like sci-fi mumbo jumbo, but so did a lot of stuff at one point in time. This would be so advantageous for a myriad number ailments.

 

The nasal passages have a pretty direct link to the brain. That's why they orexin mist works so well. It is much safer, and easier than engineering any kind of port to the spinal cord. Trust me, I already have one spinal cord implant, and I have no wish for another. Directed stem cell growth to replace what has be lost could be a promising direction, but that may be decades away, and preventing the destruction again would be problematic as well.

 

It all comes down to the fact that there's always more money in a treatment than a cure.