Modafinil
[This post has been re-dated to twelve months from the original, since its still generating comment: I have comments set to autoclose at about a year]
You might wonder what the change of direction is about, here.. Modafinil? WTF?
Here’s the story: Some months ago, my friend Chris told me that he had been prescribed this new drug, Modafinil, and that it was making a huge difference to his life. He was able to get on and do what he must, he joined a gym and started a weightloss program which turned out very successfully, and he was trying to persuade me to give it a shot as well. I was reluctant until I thought it through.. Chris and I both suffer from OSA (Obstructive Sleep Apnea) and so we are unable to obtain Modafinil on the PBS, because its only prescribed for provable narcolepsy here in Australia (unlike the US where both of us would be eligible, because of OSA). Instead, we have to pay $120 or thereabouts per month, in order to stay awake long enough to do what we need to. (I’ve gone with getting it from overseas)
For various reasons I was looking at the Medicare Site today (actually contemplating getting credentialled and getting a Provider Number and going to work for a GP instead of doing what I currently do) and noticed the PBS link. So I looked in there and saw the link to Modafinil. Followed the link and found out just how hard it is to get prescribed, even if you do have Narcolepsy. I found it really hard to believe what I was reading: even if you are a narcoleptic, you can’t get Modafinil if dexamphetamine will do. Here’s a quote from the site
Authority required
Initial treatmentInitial treatment, by a qualified sleep medicine practitioner or a qualified neurologist, of patients with narcolepsy where:
1. therapy with dexamphetamine sulfate poses an unacceptable medical risk or
2. intolerance to dexamphetamine sulfate of a severity necessitating permanent treatment withdrawal develops
WHAT THE….? The Australian Government prefers that you take amphetamines than a drug which is a) not addictive, b) wont give you a high and c) can be withdrawn immediately with no side effects. You just have to wonder who runs the PBS Authority show down there in Canberra.
I have used modafinil in the past, and have purchased it from Urantia pharma.
Do you use this site or know where I can purchase it at a reasonable price?
Will look forward to your response via email. Thanks, Helen
Actually, Helen, thats where I get mine from. Just put a new order in last week. I buy 3 months supply at a time, and the Urantia Pharma prices are the best. There are sometimes questions of whether they are as good as the “real” stuff but I have found Modapro (the kind I end up with) to be just as effective as the branded Modavigil which is what we get in Australia.
Oh yeah, I shan’t respond by email, sorry. Hope you get back to see if there was a response to your comment
i am a narcoleptic, and was on a trial for modafinil in 05 which was paid by the drug company, once i finished the trial i was told i could only take dexies, which turned out to be 6 per day, as modafinil was too expnsive and too hard to get. the dexies made me high, i became very underweight and it made me anxious and a little addicted, still the doctors made me take it! I want to know what the hell is going on in canberaa also, and with our doctors who should be fighting our cases not simply taking the easy option!
Good to hear from someone who has to deal with this, Charliee. Dex is cheap, modafinil is not. Its always about the bottom line. And it p’s me off, no end. Are you still on Dex or have you found a relatively inexpensive modafinil source, as I have…
Hi, I’m in a similar situation to you, and I was wondering what dosage you take each day. Also, how reliable is Urantia, and how long does delivery take to Australia? Thanks!
I am only on 100mg (though at times think I could do with 200). I have found Urantia Pharma to be very reliable, I bought 4 months supply last time (120 tabs) and they got to me within a week, whereas my first order took almost 3 weeks. I would say they probably have regular export days and I happened to luck into one almost right away this last time.
Hi kyte, Im not narcoleptic but am suffering from some symptoms of depression. My reading indicate thats modafinil may be a good treatment for the symptoms I have, however I understand I will not be able to get modafinil on prescription in Australia. I am wondering about the difficulty (and legality) of buying it from Urantia Pharma. Do you just order it and it arrives? Any checking by customs? Any drama at all? Do you discuss the use of these non-prescription drugs with your gp?
Hmm, there is some difficulty there, sand… Modafinil works on a different part of the brain than, say, the current (or even older) crop of antidepressants. I know that there has been some success with it in the USA as a non-standard treatment for depression but I would hesitate to recommend it as an option until you have given various antidepressants a decent trial. (Also, there are skeptics who believe its no more effective than a decent cup of coffee…)
With regard to discussing with your GP, you bet your bippy!! Your GP needs to know what medications you are taking outside whatever he/she prescribes, because sometimes there can be dreadful interactions between them, or else the effects of one are either modified or enhanced by the other. It is NEVER a good idea to self medicate without discussing it first. If you have a good GP, I’m sure you’ll get a decent hearing. Its not widely known in Australia by GPs, maybe because dex is the recommended drug of choice for narcolepsy, but if you ask…
Customs does check the contents of the pack. I was not especially concerned about that because if there was any issue I could produce a prescription… getting the drug from overseas was about $$$ for me. It works out around $30 a month instead of $120. Anyway, Customs checks and then sends it straight on. No drama.
TALK WITH YOUR GP!!! I can’t stress this enough. Really.
thanks kyte
You might want to check back from time to time… I have asked a couple of acquaintances.. one a GP and one a psych, to comment on this issue (and I hope that at least one of them will). I think its important.. there are probably others like yourself who read and pass on without comment, and the information here is only a smidgin of whats needed to make the final decision regarding whether to go for it or not.
And thats why I have stickied the post, for the moment.
Sand, you can’t legally import a prescription drug without a prescription – although it is possible you mightn’t be asked to provide one. Customs do check these sorts of things and you could land yourself in trouble. Kyte clearly does have a prescription for her Modafinil.
But anyway don’t try to self-treat depression. It is just not a good idea. Depression itself can give you a jaundiced view of yourself and the world so it can be hard to accurately assess symptoms and to monitor improvement.
If you haven’t got a good GP find yourself one. A good GP will listen to you and if you have an idea that makes sense it won’t be dismissed out of hand. Modafinil for depression (as far as I know) does not have the weight of evidence that some other very good and safe medicines have. If you have good reasons for not considering these then discuss them with your GP. Whatever you do you need to have a plan so that if a treatment doesn’t work you can move on to the next thing.
Thanks for coming in on this, Geoff. You are right, there is no clear documented evidence for the efficacy of Modafinil as a treatment for depression. I suspect that its antidepressant action may be more to do with being able to stay awake than anything else.
Hi Kyte
I’m from Australia as well and I’ve put in an order for modafinil from Urantia Pharma. Would you be able to tell me how the order was packaged? Also did you have to sign for the package? I live at the college at a university and I don’t want arouse the suspicions of my house mates.
Would appreciate any details you could provide.
Mine is always packed in a little bubblewrap envelope, no need for signing because its just sent by regular post and I am wondering why your housemates would be suspicious of anything… are you not prescribed this medication? If you are using it for any reason other than dealing with OSA or narcolepsy, then you are being very silly.
I know some have tried it as a keep-awake med when they need a bit of extra oomph but if you go down that path you are also heading into the territory of high blood pressure, and other associated ills, simply because you NEED to have sleep when you need it. This medication is good only for those of us whose brains kick in the go-to-sleep-now enzyme/neurotransmitter at inappropriate and/or inconvenient times. If you do have a sleep disorder which is currently undiagnosed, you should get a referral to a sleep-doc asap (see your GP). Before you decide whether thats the case, do the Epworth sleepiness scale – it will give a clue. Here’s the link: http://www.sleepservicesaustralia.com.au/epworth_sleepiness_scale.htm
Hi Kyte,
I was searching the net looking for some more info on the medication I currently take – Modafinil.
I have Narcolepsy with Cataplexy and, although minor, a heart condition preventing a dex script, and I STILL CAN’T get Modafinil on the PBS.
You see, even in my situation, I have to have a ‘positive’ narcolepsy result in my multiple sleep latency test (MSLT), however, I was unable to fulfil the requirements of my last test. The requirements of such are that (having come off all medication 6-8 weeks prior) you fall asleep in less than 8 minutes 5 times in one day, but ONLY when the sleep scientist says to (as they don’t keep you attached to the EEG). As I fell asleep inbetween sessions, I voided the results of my test. I also had an episode of Cataplexy whilst there, fell and cut my cheek on one of the electrodes – which is on film, AND I was plugged in to the EEG at the time, but BECAUSE I didn’t have 5 episodes at the prescribed times, no PBS modafinil for me. I’m not about to book in for another MSLT either, because without medication to ease cataplexy life has to go on hold.
On a positive note, though, I have heard, that the PBS requirements will be easing in the not too distant future, but I’m unsure as to whether this well help people without a condition preventing them from taking dex. I certainly hope so. You’re right – it’s disgusting to think the government would prefer people to be on something with so many reported adverse side-effects.
Oh damn, you poor thing!! What are you doing? Going without doesnt seem to be an option. Really, try Urantiapharma, I have bought from them twice now and if you can summon up the $120AU you can get 4 months supply. You won’t need a prescription but it would be as well to get one from your GP (yes, they can prescribe it off-PBS) and have it on hand in case questions are asked (eg by Customs). I havent found any issues, Customs check the package, find its just my meds and send it on through.
Yeah, it’s not much fun! I have a script, and have been getting it privately for the past year – didn’t even know I could order it in until I found your site, so I’m very grateful. So far I’ve found a wonderfully helpful pharmacist with another Narcoleptic on his books, so he orders bulk. I’m on 300mg a day currently (used to be 400, but decided the difference between 3 and 4 isn’t worth the extra cost!), so I have to get at least 60 tablets a time or make camp at the pharmacy…
Thanks again for the info – every cent counts these days!
Good luck with it! Alas my quoted cost was for 100mg, but buying bulk in other strengths is also cheaper than getting it here.
Hi, reading through these posts has caused me a bit of concern. I am narcoleptic, just discovered recently that I have cataplexy aswell, (while on a trial of alternative to my regular SSRI anti depressants, neurotransmitters went awry and caused cataplectic episode). Anyway am on 35 mg of dexamphetamine daily and apart from feeling a little speedy I still have the overwhelming going under a general anaesthetic feeling of a narcoleptic moment. So in between naps and writing a research proposal for my masters and looking after my 4 kids I did a little research into what treatments are available since I last checked about a gazillion years ago.
The modafinil sounds quite promising, although I have been blessed in not having to see a neurologist for about 10 yrs since my GP prescribes my dexies and really don’t feel keen on seeing another pratt in a bow tie that looks at me a little like I am a science project. (maybe things have changed… though I doubt it).
I am sure I read somewhere that Modafinil can be used as an adjunct to improve the effectiveness of the dexies, requiring a lower dose of both I presume… Does anyone know about this?
I would strongly suggest that you read about drug interactions especially in relation to these two. I rather think that people are not prescribed both, its just one or the other, and there would be good reasons for that, but I don’t know what they are.
I know you may not feel like seeing a neurologist but it concerns me that your GP has not sent you back for regular reviews. Its important to get those from the expert. GPs are wonderful creatures but they do need a bit of help from time to time (right Geoff?). You may find that since the dex doesnt seem to be 100% effective, the neuro guy may well prescribe modafinil in any case. but if I were a GP, theres no way I would advise you to take both drugs, the possibilities are hideous.
Thanks Kyte,
I wonder about the depressin stuff – could you send me a link to search this out?
thanx
I don’t have a link thats specific to depression and treatment with Modafinil. My best suggestion would be that google is your friend. You’ll find everything there is, that way, on page one.
Kyte,
I am also from Australia and am about to go and see a Neurologist for EDS and ADHD. I would like to ask him about Modavigil (as i believe its called here), and i’m aware i most likely won’t be able to get it on the Pharma Benefits Scheme (As i’m not heavily narcoleptic, just moderately i think). Could you tell me what the price of Modavigil was for you, when bought from a Pharmacy in Australia, off the PBS? I realise its probably hellishly expensive, just curious as to exactly *how* hellishly expensive
…
Thankyou!
It was $120 for me. A friend in Sydney is able to get it for around $115. I think it depends largely on the pharmacy but its going to be over $100 a month. If you can get provable narcolepsy but you also have a Dx of ADHD, they will probably insist on you having dexamphetamine. It still requires a commonwealth authority but its cheaper. Doesnt work the same way and does have side effects, as well as withdrawal issues. If your neuro guy thinks modafinil is best (yes Modavigil here in Oz) its unlikely you’ll get PBS approval anyway (although its worth a try). Those people in Canberra are NUTS.
Kyte,
Thankyou for your quick response! $120 for me is not too bad, as i am still able to work (though i’m about 5 minutes from sleep at any point during the day, its not completely overriding). I was thinking it would be more like $300 a month. Thankyou for clearing that up – I’ll talk to my Neurologist when i get an appointment. I would rather not get Dexamphetamine, as anything amphetamine based is likely to work, but prevent me from sleeping (from past experience).
Thankyou for your help!
Sleepy, what it costs you will actually increase if you need a bigger dose. I am on the minimum (100mg daily… 200 is usually recommended)…
So maybe what you should do is discuss with your GP and/or specialist, and also do some checking at your usual pharmacy regarding the cost of 100mg vs 200mg. Bear in mind also that with narcolepsy, you are likely to be on twice daily doses (morning and lunch).
I’m still working too (getting more difficult as the years wear on)… but I cannot afford to dump $120 a month into meds (I’m paying out around $200 a month in meds as it is… anything more will do me in)
Hi Kyte,
I have two children with Myotonic Dystrophy. They both need this drug Modafinil. I was told by the Neurosurgeon they qualify for it but the cost of it in Australia is $5000.00 per year for both my boys. Our GP also recommends it.
As you would know MD people sleep excessive hours therefore they miss meals. My eldest has just had surgery to get a PEG inserted because of his weight loss and he can’t swallow anymore. My youngest is going the same way, he would sleep all day if the carers didn’t come in to wake him up.
I am a single mum doing this alone (loser Ex) pays no child support, so this drug is to costly for me to purchase. But my boys need it urgently.
Noelene Giles
The cost depends on how much they need, of course. Surely you aren’t paying full price for it, you should be getting it on PBS and if its around $30+ a month initially, you should reach that ceiling very quickly where you only have to pay something like $5 for each precription. If that is not happening, if I were you I would be approaching my local Member and asking why the hell not!! You can’t get it at the post-ceiling price from anywhere overseas.
I’m a bit disappointed with my current batch. The last box is doing SFA for me (the first 3 were fine, I had ordered 4 months supply), so I am probably going to drop the whole idea of having it, myself. Quality control must have been lacking on that one, but I can’t afford to throw away $$$ on tabs that might or might not work.
Problem with the PBS is that they only authorise Modafinil for use with Narcolepsy so unless Noelene can persuade them to make a special case herself, she’ll be forced to either carry on paying or take the chance on the imported version.
Approaching her MP is probably her best first choice. S/he might be able to persuade the minister to post an exception that allows her to access the drug at the cheaper rate.
I hope she comes back to let you know what happens… it sounds really unfair!
There is a great deal of unfairness in what the Commonwealth decides drugs can be used for. Even if you have narcolepsy, as I noted in the original post, you can only get modafinil if dexamphetamine doesnt work. WTF???
Actually, I don’t know why I even said that. I know why dex is the preferred drug. Its about money. Modafinil costs more.
Hi Kyte and Welsh Dog,
Yes, unfortunately it is only on the PBS for Narcolepsy but because the boys have Myotonic Dystrophy the Hospital Neuro Registrar says the boys qualify for the drug because my eldest boy has had open heart surgery. She was going to try and get the Hospital to fund it for the boys but that isn’t going to happen.
I have emailed my local member and he got back to me the other day and he is putting my case to the Minister of Health. I also emailed Kevin Rudd (prime minister) begging for help as well. We shall see what comes of that.
I haven’t purchased any of this yet Welsh dog because I simply can’t afford it. And you’re right it’s not fair because it has now become urgent for my boys.
Thanks for your comments it sure helps to talk to someone who knows what I am going through.
Cheers
Noelene
All the best with it, Noelene, the boys deserve the best chance they can have. If push comes to shove, theres always UrantiaPharma. Link to their pricelist/orderform for Modafinil follows. I have had product from them twice now, and have had no issues regarding delivery or using my CC/DC.
UranitaPharma: Modafinil
I’m going to order more this week, I guess they were having some effect (I thought maybe I had a dud batch) because I am now 6 days without and feel dreadful.
If you decided to go down that path, get the script from the doc just in case Customs wants to see it, but you don’t actually need one for UrantiaPharma itself. The drug is produced in India or Fiji by a large Indian large pharmaceutical company and mine, so far, have been shipped out of Fiji.
hey all
I have been on Modavigil now for about 6 weeks and can’t praise this drug enough. I am using it to treat MS related fatigue and it works brilliantly. I take one tablet every two days so the cost is reduced down to $60 a month (which is helpful) but when it comes to my quality of life – quite frankly money is no option.
Would love to start a campaign to get this on the PBS for narcoleptics, MS and Myotonic Dystrophy ….
Good Luck Noelene – my thoughts are with you.
Hey now, and for OSA please! However, I do believe its about money, and patents and so on, that keeps it off the PBS listing for anything except provable Narcolepsy.
Thank you Qldred for your thoughts. It’s hard work for me but I am all my boys have so I have to do what it takes to keep them alive.
I am so glad that the drug worked for you, gives me some hope that it will help my boys if I ever get funding for it.
If you do start the campaign count me in to help you.
Cheers
Noelene
Hi Kyte,
I have been reading this thread and find it most interesting.
I have OSA and my quality of life due to daytime sleepness has been horrible for the past ten years.
CPAP does not work for me and I refuse to go on Dex, had no idea that this drug Modafinil existed.
I approached a GP and asked for the script and he did not even know what I was talking about. I have an appointment with my local GP shortly and will ask for a script. I hope he gives it to me as I don’t care about the money side of it I just want to have a better quality of life.
I am going to order it online after that GP’s appointment with or without a script and see what happens. I have to know if the drug will help. Will I get into trouble from customs, I don’t know, but am willing to risk it.
It is stupid that I may not be able to get the help I need, even if I am willing to pay full price.
Thanks for your time and the thread it is appreciated.
regards Patrick.
Patrick, go to modafinil.com and print out the information for him. If you have a good GP, he will read and consider it carefully, and he might not want to give the script right away. Give him a bit of time to do his own research.
Customs always open the packet that comes. I’ve only had it twice, and they have opened it both times and then just sent it on through. Its not an illicit substance, its just cheaper and generic, so I suppose they aren’t that interested in it.
I do need to give you a warning though. Even though its not a physically addictive substance, it does seem to have a wide-ranging effect. That is, it makes you feel “better” and I think there must be some cumulative effect over time. I ran out, and with the ever diminishing dollar value against the greenback, I opted not to order any more. I have been feeling dreadful. I guess I had not noticed small things like reduced appetite (my insulin resistance normally ensures that I am starving 90% of the time) and fewer joint aches and pains, but here I am, 2 weeks of no modafinil and its all back. Starving, pained and dazed/sleepy. I put a new order in a week ago, and will now be hanging out at the mailbox waiting for it to arrive.
Nice thing about Urantiapharma, you get confirmation of your order, confirmation of your payment approval and a notification of shipping. You also get a tracking number so you can track the order… somewhat. I havent had to deal with their customer service, but I have heard that they are very responsive and helpful
Good luck with your GP!
Thanks Kyte,
I will let you know in a week or two how things progressed and I am sorry that you have been feeling unwell.
Let us know how you feel when you go back on the meds, look after yourself and best wishes.
Patrick.
PS I have already downloaded the info for my GP.
Thanks for your kind words, Patrick. I do hope things go well for you, and yes, I would love to hear how you get on. There are a lot of drive-by readers here, not everyone posts a comment or question, so its good to get feedback from people going through the initial stages.
Hello Kyte,
Well I have been to the GP today armed with info and after some discussion, he decided to give me a script, so I could trial the drug for two weeks.
My GP had not heard of the drug, but was interested none the less. I decided to fill the script at my local chemist and it cost me $122 dollars for 30days. I thought that was okay as I could start treatment tomorrow.
Kyte are you back on it yet and have you any advice on what I may expect and how long it may take to get some real benefit. I figure you are well versed and are a good source of info.
I will let you know how I go on it, stay well.
regards Patrick.
PS I should have mentioned that the price was for 100mg tabs.
Patrick.
Patrick, you probably won’t notice much of a difference for a couple of days, but it varies. It took me about a week, but some people notice right away (within a couple of hours). You won’t get high, it doesn’t work that way, but you will notice that you are more alert and for longer during the day than before. The problem is that you become used to it and you start thinking you should be better… its not so, the drug’s efficacy does not diminish with time, its just that the bar for whats good or bad seems to raise itself, unbidden. If you doubt that, after you have been on it for a while, give yourself a week long holiday off it, and you’ll feel tragic, I promise.
Anotehr good thing that seems to happen is that your sleeping pattern begins to normalise, as well. I don’t know why that is, its probably to do with god knows what chemicals in your brain doing exactly what they are supposed to, when they are supposed to.
You said earlier that CPAP doesnt work for you. may I ask why? I am using Modafinil as an adjunct to xPAP therapy and now realise I must have both, in order to lead a relatively normal life.
My current shipment is coming out of Hong Kong and all I know is Destination – Australia
The item (RxxxxxxxxxxHK) is being processed for departure from Hong Kong as of 18-Nov-2008.
Kyte,
thanks for the quick reply, the reason cpap does not work for me is that I have really sensitive vessels in my nose and the cold air keeps me from falling asleep as the pain is excruciating.
Also the noise keeps me awake and i never end up falling asleep and stay awake all night. Ideally the drug and cpap hand in hand would be great, but I am still excited to give it a go.
In regards to what I am hoping for, it’s easy I want to feel more alert and and able to maintain focus. It sounds like that it will do that for me, I will defiantly keep you informed. I so very much am hoping that I will finally feel better, if not I will keep waiting for science to come up with the next best thing.
My next shipment of Modafinil arrived today (from Hong Kong this time), a bit less than 2 weeks since I placed the order. All I can say is thank heavens. I did not think I was going to survive much longer.
The worst of it of course is that its now going to take a while to kick in. Got some catchup to do, and I am going to consider the possibility of needing 200mg rather than 100mg, daily. To be discussed with my GP tomorrow morning
I am pleased that you have got your shipment Kyte, why Hong Kong?
I researched as many forums as I could dating back some years, and on the issue of generic Modafinil, it was about 70% to 30% in favor of generic.
Some people were adamant that it was no good, most others said it was fine. All of the complaints were of the meds coming out of India.
It was most confusing as I at some stage would rather pay the lower price. Kyte please keep me informed as to how you respond to the generic.
Now, I have some good news I have responded quickly. I am staring to experience an alertness that has alluded me for some 10-15 years.
I also feel rather like doing things that I have not been able to for awhile, like walking for pleasure and I can defiantly focus for longer periods of time. Is this what should be happening? I see a much brighter future if things only get better from here.
Stay in touch, let me know of your progress, it’s good to be able to converse with someone else on this issue. It’s hard to find people willing to keep the dialogue going.
Take care.
regards Patrick.
Glad to see its going so well, Patrick. Mine is, too. Second dose today and already I am waking up (so to speak). Where there are issues with generic meds, I am of the opinion that if you expect that something wont work, then it wont. I never had any expectations of my meds, though I had read in places that generics arent any good, but I find no difference in my response to Modapro (made by Cipla, India) than to Modavigil, which I bought first up to see if it would work.
Hong Kong because they seem to ship out from all kinds of odd places. No idea, but this time it came by courier instead of regular post, so I am happy about that as well. It bothered me that it was just going into my mailbox and any feral in the neighbourhood could help themselves to it.
Keeping the dialogue: I was contemplating starting a forum for those of us who have sleep issues, did one for a while but practically no response to it so I dropped it. Have you had a look on usenet? alt.support.sleep-disorder is a very active group, with lots of discussion.
Hi there. I have been following your dialogue with a lot of interest and hope you don’t mind if I join in. I have suffered low energy for many many years now and as I get older it gets worse.
I have a mentally challenging job (I am a lawyer) plus 2 kids, one with autism and ADHD. I also take lexapro for mild depression. I drive 2 hours a day for work and get very sleepy at really inappropriate times! I read about modafinil and asked my GP (who knows me well) for a script. She looked it up and said I needed to go and see a sleep specialist. So I have obediently gone and had a sleep study done. NOthing. I am a very sound sleeper – just a sleepy person with a busy lifestyle! The young specialist then refused to give me script for modafinil (off label) for “medico-legal’ reasons which is rubbish. Whilst I may not be entitled to it on PBS I am quite certain I can still legally be prescribed it. She doesn’t think I have narcolepsy but still suggested a study which I know, reading what is required, would be a waste of time. Whilst I can fall asleep during the day easily I doubt very much I have narcolepsy.
So now I need to go back to my GP and try and persuade her. Otherwise I will have to GP shop. All I want is something non-addictive that we help me stay alert and this sounds like the right drug. I want to do it under supervision. I want to get rid of the constant brain fog and tiredness I have. I have done all the blood tests. I am not sick. The alternate is to dip into my kids ritalin which of course is stupid. Has anybody got any suggestions for getting an ‘off-label’ script (ie legally prescribed but not PBS covered). Are there any studies I can present to my GP to prove to her I am not wishing to become a stimulant taking druggie. Thanks for you input. Kathy
Well, its not exactly a stimulant, which is why I agreed to take it, but Kathy, really, its not designed for the purpose you want to use it for.
The sleep specialist was right, you cannot be legally prescribed this medication if you don’t actually have narcolepsy or OSA (and theres another thing too, I just cant remember what it is, but its not “dog tiredness because of work and managing the family”). Your GP or the specialist could be in deep doodoo and have their medical registrations cancelled if they prescribe for a condition which does not exist, in you. So the medico-legal issues are not rubbish, I’m afraid, I wouldn’t prescribe it either, and I am certain my GP friend who periodically looks in here would also be hesitant to do so (well lets just say he wouldn’t do it)
I don’t know what to tell you, and I sure would not recommend it as a lifestyle assistant and please… do not take the ritalin.
You could go back to the sleep doc and have a polysomnography test, and that means a whole day off work and getting tested for narcolepsy. Another possibility is some autoimmune thing, get your antibodies checked, that can make you tired all the time. Are you diabetic? If your BGL is out of whack, that can make you tired. How depressed? Depression can make you tired. There are lots of things that ought to be looked at or changed before you consider a quick fix via modafinil.
I know this might come across as unsympathetic, but truly, there must be other options to consider.
I appreciate your input. I must be mistaken about the category of drug. Thanks for letting me know. Kathy.
Its not so much the category you were mistaken about, Kathy, but the purpose. If you really are failing to cope with what seems to be normal levels of tiredness considering what you have to deal with each day, you ought to go back to the doc and get rechecked as I suggested.
Modafinil works on whatever those chemicals are, in your brain, that say “go to sleep right now”. For people with narcolepsy, they kick in without so much as a by your leave, and sleep is not an option. For people like me )and not all people with OSA have this), they kick in after about 4-6 hours, even if I have had a good, undisturbed sleep… in myself I suspect a mild narcolepsy on top of OSA, but haaven’t had time or energy to go back for another test. I can fight off sleep up to a point, but I am cognitively impaired beyond that point, and the way it feels is like being dazed. Its unpleasant, and its not just like being tired, which I also experience.
With modafinil, I can do my day’s work and get myself home again without too much trouble. Its still difficult, because I am an early waker so I need to go to work early and leave early… that can cause issues, I think, with management, who I suspect might think I am skiving off when I am not.
I hope you are able to find your own solution soon… if I were your doc, the first thing I would be saying is “find a job which doesn’t require you to drive 2 hours each day”
Hi Kathy,
How is it you going with you?
Your story interests me and I would like to give you another avenue of interest to pursue.
You can contact me on gentle1000 AT iinet DOT net DOT au
Kyte, Things are going very well for me and getting better everyday.I no longer suffer from sleepiness during the day. I agree with you about it not being easy, but it is so much better. My concentration and focus are very good and I now have the full support of a specialist who is going to organize a sleep study and based on the results feels that she can get me on the PBS for modavigil.
All in all I must say that at this stage the prospects of returning to study and or work are looking promising, although I will wait and see how it goes over another month of trial.
Oh and I think a forum would of been great.
regards Patrick.
Patrick, I’ve munged your email address somewhat, its just that posting it on a public site will generate a bazillion spam emails. I do hope I’m not too late. Spambots crawl my site regularly so thats why emails are never published here, its too much of a pest. Might I suggest going to gmail.com (you’ll get redirected to the right spot) and sign up for a google mail address. The spam filters are very good, there, and you can redirect your iinet address through there, I think, which will filter out spam from there as well
its all good.
On the matter at hand… I am so glad you are finding the modafinil useful, and if you can get it on the PBS so much the better!! Congrats on that, at least.
Forum: I’ll consider it again but perhaps a more general one under a different domain.
Thanks Patrick.
Kyte, the thing is that I do get overwhelmed with sleepiness. I can sleep anywhere and anytime. The other night I had 8 hours sleep, went out and then went back to bed at 9.30am and slept for 2 hours. I can fall asleep on trains, in busy shopping centres at a cafe, in front of my computer at work (I’m very good at hiding the micro nap), even during an MRI. In the afternoons it can be so overwhelming I just have to give in for 5 minutes to get over it. I often have nap outside the school for 5 minutes before pick up. But I have read the PBS definition for narcolepsy and it seems so strict that I can’t believe I would fall into the category. I don’t have cataplexy. I don’t have sleep apnoea. And I now realise it is an Authority required drug so the doc can’t prescribe off-label unless I fulfill the category. I pity people who have chronic fatigue or MS because they wouldn’t satisfy the requirements either.
I strongly believe that not everyone has the same energy levels. I have always had low ones or more appropriately I get into a bit of a frenzy of activity and then burn out fast. I am not overweight, I eat well and could probably do more exercise but I am not lazy. I just seem to get a constant brain fog and sleepiness and have always felt this way. From the articles I have read this drug is used in the US a lot by professionals, scientists and so on who need greater mental alertness.
Hi again, Kathy, glad you came back, perhaps Patrick will have some help for you. I know that there are some in the US who use the drug for greater mental alertness, some refer to it as a “lifestyle” drug.
I do understand what you are saying and I understand why you might want the drug, and you are absolutely right about individuals not necessarily having the same energy levels: its true. And yes, because of the PBS system and what some bright young thing in Canberra decided (and the holy damned dollar), we can’t get it cheaply. You *can* get it legally at around $120 a month, with a standard prescription, if your GP goes for it, and believes its the right thing for you. IIRC my GP did not have to ring for an authority, she just shot off the script from Medical Director and I took it to the pharmacy for filling. It took a few days because its not something they keep in stock normally.
I am getting mine from overseas because I simply cannot afford the cost: I have to get it off-PBS. If I was a narcoleptic it would cost much less.
Just as a matter of interest, *have* you been checked for CFS, or Ross River virus? Another thing: go do the Epworth Sleepiness scale and print out the results for your GP. He/she doesn’t need permission from a sleep doc to prescribe (but I understand why you would have been sent for tests).
I guess, though, if I was your GP, I would want to be certain that I was prescribing for the right reasons, and that I was not missing something critical which might be causing the brain fog. Have you been checked for hypothyroidism? Lupus? Diabetes? There are a bazillion reasons one might get really sleepy (your lifestyle being one, but if you were always this way, then investigations need to be done) and if there is any significant disease process happening, then taking modafinil wont help, unless the disease is also being treated. And treatment of the disease (if it exists) will go a LONG way towards sorting it. If you have already been checked for everything, then you need to make a decision if you are going to self-treat. But… DO tell your doc what you have decided, especially if you are on other meds, he needs to know because of potential interactions.
Please note that I am NOT recommending self-treatment without medical supervision, and am advising strongly against it.
General comment: My last batch of Modapro came, finally. Because of the devaluing of the Aussie dollar against all the major currencies, it cost me $180 instead of my usual $120 for the same quantity (4 months supply at 100mg a day)… and instead of the regular post bubblewrap, it arrived via courier and had to be signed for, from Hong Kong. Oh well, no biggie for me but Lauren, if she is still reading, might want to know this
Hi there, I’ve just quickly run down the conversations, and I don’t know if this has already been discussed; my Dr. has just prescribed Modafinil for me to help with Cronic Fatigue Syndrome (CFS). A trial period of twenty days that has cost me almost $80. He believes that I might gain some benefit from the stimulent effect of the drug. Has anyone heard of its use for CFS, and did it work? After two days I feel permantly light headed but not exactly flushed with energy or alertness.
Kyte. An addendum. My doctor prescribed me modafinil today after I took along the print out to her of the fact sheet and explained my reasons and also gave her a medical reason (I also have a balance problem that makes very tired). She was able to prescribe off label without a problem. I am going to buy through a reputable chemist to see how it goes. She was outraged that on pbs you can’t get modafinil until dexamphetamine is tried first.
@ Dara: I haven’t ever heard of it being used for CFS because there is something different operating there, which makes you tired. Modafinil works on a particular chemical in the brain which tells you to go to sleep. I think you would find that in CFS there isn’t any involvement of this particular chmical and so Modafinil would seem not to be very useful. Give it a week but this lightheadedness does not seem right to me.
@Kathy: Excellent work, thats all thats needed. Above all you need your GP on side with this. My GP is as outraged as yours. But as I said at some point during this discussion, its actually about money, not patient care. All drug releases are driven by money considerations. Remember that all our meds are subsidised. When you dont get subsidised its usually because there is another alternative thats cheaper. The government is paying a substantial amount toward its cost. So Dex might actually cost ~$80 a month, but because of the subsidy, we only have to pay… oh idunno, $30 or so? So the government pays ~$50 on our behalf. If modafinil were PBSd for all of us who need it, the goverment would be paying ~$90 per. Remember also that pensioners only pay $5 per script. So thats even more that our govt pays for. The drug companies have absolutely no altruism, its not them reducing costs, they still get a LOT of $$.
I think it sucks, but there it is.
Comments will now be closed: please continue discussion at
Hamarana Messageboards
Comments reopened… I’m over wanting a message board (Sorry Patrick)
Hi Kyte
Well good news for my boys, I got the funding ($5000.00) from Rotary Club of Preston to get the drug for my boys. They have been on it for a few weeks now and the change in them is huge.
We see the specialist next week and she is going to get it on the PBS for the boys now that we have proven the drug works.
Best Christmas present I could have asked for.
Cheers
Noelene
Well, I finally got the MSLT done and it seems that I “officially” suffer from excessive daytime sleepiness. The Dr wants me to go on dexy although he will prescribe modafinil for me if I’m willing to pay the non-PBS price. He doesn’t seem to think modafinil is actually superior to dexy in effectiveness or side effects, so I dunno what to do – is it all a massive conspiracy? Or is he right, and dexy’s not that bad (or modafinil’s not that good)?
I’ve had to change the date of the original publication, so as to reopen comments (they are autoclosed at a certain point because of the spammers delight in making “comments” on old posts).
@A
Its not a conspiracy: dexamphatamine is relatively cheap, and has side effects and withdrawal symptoms should you decide not to go for it on the long term. I have never been able to find any side effect from modafinil although it can interact with other medication you might be on. I have excessive daytime sleepiness too, as a result of the OSA (and, as it transpires, a healthy – or rather NOT healthy dose of chronic obstructive pulmonary disease) but I don’t have narcolepsy and so do not qualify for PBS listed modafinil. Modafinil is still expensive because the one company that invented it obviously still holds the patent. And it will keep renewing it as long as it can, because the other pharma have not made the same drug under a different name… except those like Cipla in India (who make mine) and who have basically told the patent owner to shove off. Obviously it was an oversight not to take a worldwide patent. So yeah, maybe it is a conspiracy.
One thing I do know and that is that health and medication have nothing to do with people getting well and everything to do with Big Pharma making more and more money.
@Noelene Giles
Noelene, thats wonderful news about the boys… its been months now.. so how’s it all going? (Hope you still get back here to read once in a while)
greetings all
i am in northern california and somehow i ran into your
blog via a search on google. i am 54 yrs of age and have been disabled since 2001. having been treated for depression since 1994, and experienced just about all of the SSRIs available except for paxil. i go to a clinic and my income is low enough that i qualify for full charity through catholic healthcare, a large hospital corporation. because i take so many prescriptions and i am medicare eligible, i have a drug plan that covers my meds except for the times (like right now) that i am in the “doughnut hole” or coverage gap. at least with my plan i still get my generic meds at the same copay but name brand drugs are no longer covered and i must pay 100% of their cost until i reach the catastrophic phase (which is a couple of thousand dollars away) and i won’t reach by the end of this calendar year when it starts over again. i take 20mg dexamphetamine for depression related fatigue, which is considered an “off label”
use of the drug. my psych doctor is willing to prescribe it but many docs here in the states hesitate to use the drug due to its side effects and dependancy issues. i realize each person reacts differently to the same drug. i have taken the same dosage of dexamphetamine for eight years now, and although i have become tolerant my doc won’t increase the daily dosage. provigil (modafinil) is very expensive here and not available in generic form. i have found the product made in india by cipla and by sun pharma is of high quality, at about half the cost.
i use urantia mail order pharmacy to purchase 200mg tablets and can’t say enough in praise for their service. after an awful episode of major depression in early 2008, changing to 20mg lexapro each day along with 150mg wellbutrin SR once daily, i am almost feeling like my old self. i still battle fatigue and take my dexie mornings when i have a problem getting out of bed. for the past four months i supplement with “modalert” 200mg once or twice a day with a huge increase in quality of life with virtually no side effects. oh yeah, maybe one, the strange smell of my pee (like after you eat asparagus!). my bloodwork comes back normal and a recent cardiology work up came back with flying colors. of course i will continue to follow my labs closely. only one thing regarding urantia’s shipping protocol; no problems clearing customs but i have ALWAYS had to personally sign for a packagse upon delivery by registered US postal service. it is a problem only when i am not home to receive. if you order more than one product from urantia they automatically ship it separately. be sure to ask for their discount coupon code to help absorb the cost of additional shipping. i am so glad for your blog and as a side note, i love your country, visited in 1995 and didn’t want to return to the good ole US of A. why is it so difficult to establish residency there?
Same reason its almost impossible to establish residency in the USA. If you’re disabled, and in need of such social and medical supports, you won’t be bringing anything to the country except an additional drain on our already overloaded health and social services systems. I would not be able to live in the US because I’ll be in the same boat in just a few months. Why should your country have to support me if I cannot work? Why should mine support you?
Medstore is the BEST source for MODAFINAL-ALERTEC-PROVIGIL. Takes about 10 days total to the states….Dont be fooled by URANTIAPHARMS PRICES. I fell for that trick before…waited a month and the darn package finally showed up. Spend a few more dollars…still very cheap here and with each order that you make after first one…they give you an extra 10 % in pills. Take care and Good Luck !!!
Nothing wrong with Urantiapharma’s prices when you live in Australia. They make no promises about immediate delivery, it varies. I’ve had deliveries after a week, and also after a month. It depends on many variables I expect. But I have never had anything go missing, and the price is 1/4 what I’d have to pay in Australia, and they are reliable. Glad you found a good source for yourself.
I am pretty sure that Medstore delivers to Australia. 8 Days from start to finish in US is so much better than saving $20 USD and waiting and waiting forever…lol In a perfect world we could both walk down to the corner and purchase these like a headache med…lol Take care !!!
I checked medstore and found that $49.95 USD as opposed to $32 USD was not worth it for me. It translates to a saving of $20 per box, and I buy in bulk so its a bigger saving again, and only one shipping fee. Overall I find it an acceptable cost, and something I can manage. That additional $20 would put it out of reach on the long term. I already pay over $200 a month for my regular meds from my local pharmacy (no advantage buying from urantiapharma), just can’t wear another $55
oh yes, btw, they do ship to Oz.