14 replies to this topic

[jaxbp]

Hey forum,

 

I have always been able to fall asleep almost anywhere at anytime.  When sitting still and being passive staying awake would at times be painful.  Driving long distances always required frequent naps.  No history of cataplexy symptoms that I am aware of.

 

I was diagnosed last december with a sleep study and have been prescribed Nuvigil.  At first Nuvigil seemed to do little for me for the first few weeks.  I was bumped up to 250mg but I guess it finally kicked in around this time.  I felt "normal" for a little while and then I started feeling like crap with these "flushed" head feelings, figity, and not sleeping.   Also around this time a small painful red bump would appear every day in random spots. 

 

I thought it was acne and didn't mention it to the doc.  Met with the doc and was put back on 150mg.  The 150mg dose now makes me all figity and keeps me awake at night.  In fact I have now had trouble sleeping which is not really normal for me and I have all but discontinued the Nuvigil.  I was recently taking the 150mg once or twice a week and when I do I get these small red bumps that hurt and stick around for weeks.  They are like pimples but not pimples.  I have had plenty of experience with cystic and acute acne and I know thats not what this is.

 

Anyway I am at the point now where I don't feel the EDS without the Nuvigil so much and even a dose of Nuvigil keeps me up and I can't take the figity-ness, red painful bump, and insomnia I get.  Has anyone else had similar experiences?

 

I read about the SJS skin disorder it may cause and I don'tbelieve that is what it is.  But I am definitely getting some skin related issues from them and decided to stop.  My doc is closed friday so I will update her on these experiences on Monday.

[SleepyDays]

I had a similar experience with Ritalin/Concerta.  I got a rash on my face, it was kind of itchy/burny and looked like acne but under the surface of my skin.  I went to a drug allergy clinic and they said they didn't feel it was an allergy.

I went to a dermatologist and she diagnosed me with Rosacea.  I guess the Ritalin was a trigger.  I went on Noritate cream and that has cleared it up. I use it every day and haven't had a flare up since.

[munky]

SJS is not the only type of rash one can get in an allergic reaction. Really sounds rather more like hives, to me.

 

From WebMD: Urticaria, also known as hives, is an outbreak of swollen, pale red bumps or plaques (wheals) on the skin that appear suddenly -- either as a result of the body's adverse reaction to certain allergens, or for unknown reasons.
 

Hives usually cause itching, but may also burn or sting. They can appear anywhere on the body, including the face, lips, tongue, throat, or ears. Hives vary in size (from a pencil eraser to a dinner plate), and may join together to form larger areas known as plaques. They can last for hours, or up to one day before fading.

 

 

Stopping the meds for now is a good idea and should be done with any possible allergic reaction. Definitely talk to your doctor about it on Monday, and good luck.

[doinmdarndest]

nuvigil was not right for me, either.  it impaired my cognizance, and i inadvertently shoplifted 2 times-realizing i was holding unpaid for item in my hand-after i had left the store!  (went back/paid both times, of course.)  also hallucinations of shimmering like light shined through a fan.  and dehydration.

 

amphetamines work best for me. the sort acting med methlyn is the 2nd choice for most rx'ers tx'ing n.  some stop there, and simply refuse to rx the former when the latter fails.

 

WORD TO THE WISE: discuss both w/your doc, if no spirit of cooperation, REPLACE the md.

 

GOOD LUCK!/best wishes

[austeenob]

Hmmm... I get thirstier with Nuvigil. I am sure that I pee alot more and have maybe more frequent bowel movements. A tiny bit of hungry suppression. other then that very small almost innoticable things. All medeicines don't work for everyone. Try and find what works best for you with the least bit of side effects. The reason I stick with nuvigil (75 or 150) is because it works best for me, and feel closest to my normal self. I also like that its a natrual stimulant, and not a manmade stimulant. Good luck finding the perfect med for you!! I know you will

 

Goodluck

[jaxbp]

I talked to the doc over the phone and she prescribed me 50mg and for me to take 2 a day (100mg/Day).  I did this from tuesday of last week to today, 8 days.  I now have these little red painful bumps all over me. 

 

Yesterday I decided to scale back and I took 50mg b/c I could already feel the crap feeling I get coming on.  I get this awful feeling like I am light-headed, have a mild headache, and I have this warmth or heat feeling in my chest and head.  I don't like it and it is distracting from my work.

 

Today I took no Nuvigil.  I have these red bumps in about 6 different spots all over my body.  At about 11:00am I thought about calling it a sick day.  I was suffering from extreme EDS by 3-4pm.  I also am feeling that crap lightheaded-heat feeling. 

 

This happened last time when I first started taking this stuff.  I did call it a sick-day around 11am and went home.  I called the doc and tried it again.  I posted here after my 2nd round with this stuff made me feel awful.

 

This Nuvigil builds up in my blood.  It has a half-life of 12hrs.  I have a hard time falling asleep which is highly unusual for me.

 

The sad thing is that for the 1st few days (after not taking it for a few days) I have no EDS whatsoever and feel fine.  Then I start having the painful red bumps.  About the same time I feel the weirdness in my head and chest building each day.

 

It is almost like I have a delayed bad reaction from this stuff for days.  The reaction gets worse and worse while I stay on the medicine until I stop with my dosage.

 

Provigil is related and I am afraid it will have similar effects.  I guess its either some other stimulant or xyrem for me.

[jaxbp]

I had my appointment and I told my doc about my problems with Nuvigil again. 

 

I swear I could feel the effects from my last 8-day session with it clear through to saturday, a full 4 days after I quit taking it including the insomnia.  

 

The strange thing about this drug is I feel fine the first few days.  Then I can feel a steady worsening of what I can only describe as the combination of painful red bumps, suckiness, malaise, head and chest "heat", and "weird not like I normally experience head-aches", and trouble sleeping at night.  My 1st session with Nuvigil ended with me taking a sick day a few months ago after about 10am on a day I decided to NOT take it.  I went home and felt like absolute *BEEP*.  I could not do anything.  I could definitely not sleep.  At least I wasn't feverish or confined to the bathroom.  This is the 1st sick day I have taken in 2 years.

 

Everyone's body is slightly different and I already know I am weird.  Some will probably never have this problem on *vigil.

 

My doctor has prescribed Methylphenadate ER.  I'll see how this stuff goes. I of course googled/wikipedia'd it

 

Kinda scared of this stuff.  I just wanna not be sleepy during the day.  If xyrem or methyphenidate or whatever fixes it then thats awesome.  My doc asked me again about cataplexy but I don't think this is something I remember experiencing.  Supposedly cataplexy is what Xyrem is mainly prescribed for.  I am interested in xyrem only because it supposedly treats the causes of narcolepsy, not just the symptoms of sleepiness that results from the sleep disorder.  We'll see how the Methylphenydate works

[nike0518]

does anybody here know how high of mgs can you get for ritalin and for concerta?

because ive barely been diagonosed this school yr & im in the trial and error stage with dr 

so far ive taken nuvigil-150mg 

concerta-18mg 2 a day

ritalin- 20 mg 3 a day (current)

 

so far nuvigil works well but i cant concentrate 

concerta was too low of dosage and lasted only 2 or 3 hrs 

ritalin is too low on dosage for me lasts like 3hrs.

now if i take 3 a day like i am now for ritalin ill be alright but I dont want to be taking one at school

 

so im a lil confused on what i should pick for treatment... anybody has any tips? plz 

[doinmdarndest]

i have been going over the postings in this forum w/a fine toothed comb for over 2 years now, and the other n. forums as well.  all of them.  the reason why is that i have extraordinary high dose needs for my med.  it is adderall.  initially my goal was to fin d others w/similar needs (i am rx'ed 270mg/d adderall-and i have yet to find a similar 'doseagee')

 

what i learned is that over the years, fewer andf fewer pwn are rx'ed amphetamines.  virtually none today are rx'ed methamphetamine (desoxyn-go to 'medication station'..only 2 there)  this scares me because those of us who respond to amphetamines respond quite well.  if you happen to be in this group and have yet to be rx'ed the med, there is a good chance you never will-doctors these days shun this rx, i strongly reccomend being prepared to fire your dr., and assert the suggestion your md begin amphetamines at the start of your next visit.  do so courteously.  if this is not done, it likely means your md is one not willing to go w/ this option.  therefore, fire him and get another md. 

 

the 'xr' version puzzles me; i fail to see the logic.  seems like trying to get better mpg fromk a car by leaning out the mixture.  i do not know why dr's dont just use ir.  and another thing: why is it nearlty always methlphynadate when 'vigils fail?

 

somebody here said the 'vigils are 'natural' stimulants.  they are not, and the docs/scientists don't even know how they work.  something is amiss in the year of our lord 2013 in the rx'ing of wakefulness promoting medications  this is absolutely certian.

 

i suspect a handful of amphetamine 'rxee's' had a psychological reaction that was reAlly bad-just ran amock, flipped out, whatever and so the md's hear about these 2 or 3 cases from other md's, making them decide not to rx this med.  and so many many people are not able to be wakeful.

 

think i'm paranoid?  take the time....it will be thousands upon thousands of hours... to do the same thing i did.  look for posting in the n forums where pwn's stimulant regimens are covered.   begin by going back as far as you can into past posting in each forum-the '90's in some. you are certian to notice just as i did that fewer and fewer pwn are given the option of amphetamine rx, and you will notice the ones that are given it often are happy w/the results.  

 

this may bear looking into for us as a group.  we may be too tired for any major action but it might be high time we did something about the amphetamine availability situation.

 

it is now sub-optimal.  

[munky]

Don't want to hijack this thread, but wanted to share something. I did some reading about treatments last night, and from what I can see, doctors prefer to avoid the amphetamines because of the potential for addiction, and when they do prescribe them they prefer the XR because it's thought to lessen the chance of addiction.

 

It's entirely understandable, when you look at it from their point of view. If they prescribe amphetamines as a treatment, and the patient becomes addicted and abuses them, it leaves the doctors open for all kinds of lawsuits--and it's even worse if that patient ODs.

 

In a society where the adult children of a man who committed suicide sue their father's psychiatrist for not preventing it--despite the fact that the only person he'd mentioned suicidal thoughts to was one of said children, who ignored it--and it can actually make it all the way to a jury trial, doctors have to be very careful. (And, yes, the case I mentioned is a real one, in Texas many years ago. I was a member of the jury pool, until they asked me if I had already formed an opinion in the case and what it was ... and my answer was not at all polite.)

[doinmdarndest]

HERE'S WHATS 'ROTTEN IN DENMARK (so to speak):  the word 'addiction' is not applicable to pwn in need of wakefulness promoting medication responding to apmhetamines rx'ed to treat eds/fatigue. 

 

the addict is using the amphetamine or whatever on an ELECTIVE basis.  we pwn, when rx'ed amphetamines use them because of MEDICAL NEED, and when the best response is had w/the amphetamines once they are rx'ed this means the BEST TREATMENT POSSIBLE is being given, particulaly if the rx'er has tried other meds, or prior rx'er's have.  in practices wherin no amphetamine rx is given to any patient despite other wakefulness promoting medicine's inadequacy, it is possibleTHE BEST TREATMENT IS WITHELD W/O MEDICAL JUSTIFICATION.   

 

i am certian such practices exsist among those of md's tx'ing sleep disorders today, and not unlikely they are far from rare.  some here seem tio be tx'ed in such a practice right now, read all the new posts it's not hard to tell who.  

 

the problem of addiction is NOT OUR PROBLEM, pwn, and unless and until we begin asserting this fact we will go on w/some of us DENIED ALTOGETHER THE BEST MEDICAL TREATMENT.

 

w/dx of n, there is no excuse for md's not to explore all wakefulness promoting medications including amphetamines and also methamphetamine (desoxyn) insofar as pervious and existing rx'es for alternative such meds yet do not produce a response.

 

the 'xr' i see as leaning out the gasoline/air ratio in a car's engine way too much resulting in poor performance in an effort to raise mpg.  the guidelines md's have to go by such as manufacturer's reccomended maximums (it's 60mg/d for adderall) reflect amts. its only fair to say are puny, so why make things worse w/xr? 

 

the 60mg/d adderall's equivalent in street meth is $3 worth.  NOBODY takes this amount recreationally, as it will have little or no effect.  in being rx'ed same amt., we are somehow to continue responding as we take our med daily.  is this logical?  who in the f. is coming up w/these #'s, particularly this one?  one thing is certian: whatever else the person or persons who set this doseage amt. and others like it may happen to be, they are also pwon, not pwn.  it's a lead pipe cinch.

 

we have got to stand united people.  pwn must recognize what is truth and what is baloney, no matter how thin they slice it.  and for any md to deny indicated tx for eds/fatigue sufferers based on known proclivities of drug addicts, none of whom have any such affliction, is baloney. 

 

no narcoleptic has any business validating the md's act, or doing other than crying foul if/when faced w/medical practicioners witholding any given treatment that happens to be indicated for any of the symptoms of our incurable, rare, and scarcely understood disease from any given narcoleptic against same narcoleptic's best medical interests. 

 

this is far too commonplace for md's w'/eds/fatigue sufferers never rx'ed the amphetamine option.

 

so we see the availability of amphetamines  for pwn -not addicts- is beyond the shadow of a doubt SUB-OPTIMAL.

 

and we can rest assured the addict can get amphetamines w/o much difficulty, even as some pwn who have medicinal need for the same often cannot get the med at all, or are even given any awareness of it's potential benefit in practices wherin it is not rx'ed.

 

what's right about THAT?

[jaxbp]

I am on my 3rd day with Methylphenidate XR.  None of those flushing/heat feelings or head effects like the Nuvigil yet.  I really wish I had abetter description here.  It was definitely not good and got worse each day on the stuff.  No real side effects yet.  No sleepiness either.  Concentration seems unaffected.  It was the 3rd day w/ Nuvigil I started feeling the side effects.

 

Interesting note about the amphetamines doinmidarndest. I dont care what drug I end up on.  As long as it works with tolerable side effects.   Having to take sick-days is not a tolerable side effect like with Nuvigil.

[doinmdarndest]

methlphynadate is an amphetamine.  i do not know how long the xr lasts but the ir has a half life of 3 1/2 hours the ir adderall has 10.  if methlphynadate wears off too quick ask about adderall, or maybe desoxyn it has a 5 hour half life.  it is methamphetamine, also an amphetamine.

 

good luck w/ that one if you go there.  it's got to be the least likely med eds/fatigue sufferers to actually be prscribed us. only one in these forums that i recall gets desoxyn now.  i asked my former rx'er for it and he said my request was not unreasonable but he was not comfortable w/rx'ing desoxyn @ high doses.

 

he's the dr. who began my adderall and titrated up to 300mg/d.  medical history ought to recognize this dr.  it looks to me my case might be one for the books, nobody i can find, and i've looked real, real, hard, gets even half this amt. 

 

and guess what?  its well tolerated exept for high bp but lisinopril 10mg/d has me normotensive so that doesn't count.

 

many here could also enjoy wakeful days w/ adderall when time/tachyphylaxis rob them of response.

 

the dose can be ramped up so as to restore lost response successfully.  i am living proof.

 

wish i could get science to notice, then other pwn's md's could have reason to find rx'ing adderall and other amphetamines more liberally might be ok and so more of us could be free of our eds/fatigue like i am, and my eds/fatigue is quite severe.  i had no reason to think the scientists would find me special when i emailed some of them, but i tried anyways because i saw others in these forums who i thought might benefit if their rx'ers would rx a little more like mine did.  i figure they do not because of medical science's conclusions about amphetamine rx, and that the conclusions are somehow erroneous or i'd not be ok w/ my regimen.  i'm only 51 and until i get though a normal lifespan still responding to adderall-if i live that long-i don't suppose it can be conclusive that my adderall regimen is truly a good idea. 

 

currently the trend in amphetamine rx is to deny rx or severly restrict the amnt.

[jaxbp]

Well on my 5th day with the Ritalin aka Methylphenidate.  I was trying to drive on a pretty long drive.  Switched off with my wife about 30 minutes in because I was sleepy.  I wound up taking an hour nap in the car.  Maybe the dose is too small.  It comes out to 0.25 mg/kg and its the XR version so maybe its more like 0.175mg/kg since it releases half the dose immediately and the other half 4 hour later.

 

I'll call tomorrow and tell my Dr.

[doinmdarndest]

The following Stanford link downloads "PHARMACOLOGICAL ASPECTS OF HUMAN AND CANINE NARCOLEPSY", an article written by Dr. Emmanuel Mignot:

 

 http://med.stanford....gNeurobio52.pdf

 

Print off this article.  Bring it w/you to your visit w/your MD.  Underline or highlight the part on pg. 37 or 38 recognizing the need for high doses in some patients.

 

Give the printed article to your MD to keep.  Have it opened to the highlighted or underlined sentences.  

 

 Do whatever you must to get to a printer,  I would suggest Kinko's if you don't own one and the library isn't an option for this where you live.  

 

This will likely be a 'game changer', specific doses for Methlphenadate @ 1000mg/d and for Desoxyn @ 250mg/d are mentioned by Dr. Mignot as examples. 

 

Dr. Mignot is the world's most prominent MD in the treatment of narcolepsy, and in narcolepsy research.  He is also the Director of Stanford Sleep.

 

It's highly unlikely your MD has never heard of him, especially if he or she is in sleep medicine.

 

This institution is recognized around the globe as  #1 in treating our disease and researching its causes. 

 

If it's not possible to obtain this article before your visit rescheduling might be a very good idea-remember: the medical community today is more highly resistant to rx'ing traditional(means other than 'vigils) stimulants than at any time in modern history, and to titrations upwards of same.  You must hedge your bets as best you can.

 

 

The stress of knowing the MD might decline to improve your regimen can trigger adrenaline, causing your behavior to falsely yet quite closely

 

resemble wakefulness/adequate response to your exsisting regimen.  Be certian to appear tired, say little as possible.

 

You may accurately regard this as the advice of a narcoleptic with experience at successfully negotiating for the higher mg/d amts. he needs. 

 

The bad news is that doing so successfully can be exceedingly tough.

 

The good news is you are unlikely to need the doses mentioned by Dr. Mignot in his article, or anything like the 300mg/d Adderall rx'ed me, or even half these amts. 

 

Good luck.  May God look out for you.