I don’t know the first thing about modafinil but it seems it is one narcolepsy drug which is widely misused. Anybody care to comment?
I've been taking Nuvigil for excessive daily fatigue believed to be caused by Psoriatic Arthritis - an autoimmune disease like Rheumatoid Arthritis. Nuvigil makes me feel like a normal person again and without it, my quality of life is severely decreased. Despite taking Nuvigil, however, I continue to have re-occurring hypersomnia - I will sleep 20 hours one day, 15-18 hours the next until I resume a normal sleep pattern. I hadn't had an episode of hypersomnia for over 6 months until these last 2 months when I've had several including my longest episode that lasted a week.
I'm trying to determine the triggers for these episodes and I'm searching for a sleep specialist or any specialist that can help me get a handle on my hypersomnia. I live in the Washington, DC area - if anyone knows a good doc, I would appreciate a recommendation. It's hard enough managing the Psoriatic Arthritis and then adding hypersomnia, makes it overwhelming to manage my health and work.
Any thoughts or ideas are always appreciated !
In my personal experience low doses of modafinil. did not help much, but I am taking high doses (higher than my insurance would approve-400 mg twice a day) and it definitely makes a difference. If I forget to take it there is quite a difference.
I've read several comments on the internet from people taking modafinil, that they try to skip taking it once every 7-10 days because there body gets use to the med. By skipping a day, they say it keeps the potency level.
Virginia, we don’t have any members in Washington DC unfortunately. Did you know there is a
Facebook group ‘Narcolepsy & Hypersomnia Community of the Greater Washington DC Area’. They may be able to help you with your search for a doctor.
All the best
I didn't know about that Facebook group - thanks so much ! I will join it.
Nel said:
Virginia, we don't have any members in Washington DC unfortunately. Did you know there is a
Facebook group 'Narcolepsy & Hypersomnia Community of the Greater Washington DC Area'. They may be able to help you with your search for a doctor.
All the best
Hello All,
Very interesting!
Show me the drug that treats the main issue/cause, not the symptoms, is not just endless selling drugs to us and does not cause serious side effects.
On another note I was very surprised England was not approving med's if you wanted them for narcolepsy. In the US all they do is try to "push drugs"...on people.
Thanks for allowing me to let it out a bit :)
Ranger
PS: http://en.wikipedia.org/wiki/Hippocratic_Oath
A quote of a short part of the "oath":
With regard to healing the sick, I will devise and order for them the best diet, according to my judgment and means; and I will take care that they suffer no hurt or damage.
Nor shall any man's entreaty prevail upon me to administer poison to anyone; neither will I counsel any man to do so. Moreover, I will get no sort of medicine to any pregnant woman, with a view to destroy the child.
Further, I will comport myself and use my knowledge in a godly manner.
I would like to see that printed out and framed in a doctor’s room where he/she can see it and be reminded daily!
I imagine that only a very small percentage of medications treat the illness itself. I know the drugs I have been offered/trialled are purely to alleviate symptoms and have made me so sick that I prefer to deal with the pain as much as possible.
With regard to the NHS, because we only pay a contribution towards medications they are restricted by NICE (the National Institute for Health and Clinical Excellence) who make the overall decision about which drugs should be available on the NHS. Then they have to be authorised by regional ‘Primary Care Trusts’ which has resulted in a postcode lottery whereby someone living only miles away may be given life supporting cancer drugs denied to the other. Furthermore, if we go private just to be prescribed that embargoed drug the NHS can refuse to continue care so people who cannot afford to move over entirely to private care are caught in a cleft stick. The NHS is a wonderful institution but people forget it is paid for by our ‘national insurance’ contributions, a percentage of whatever we earn until retirement age and still it fails large numbers of people because it can’t cope with an ageing population and expensive new equipment and drugs. Heartbreaking particularly for some cancer sufferers and their loved ones.
Always good to hear from you Ranger. I hope the move is not taking too much out of you.
Hi Nel,
The move....never been under more stress and pressure, but a number of the people of church realize my situation and are pitching in...I'm not "18" anymore :)
Yes, I would also like to see some code of ethics posted on the wall. My deepest feeling is unless you have narcolepsy or some other disabling illness they are clueless about the deep affect on us.
I know that stress is very damaging for our health.
I can only do what I can do and not what others think....
Take care :)
Ranger
I am currently taking modafinil and I have to take 200 mg twice a day in order to feel a difference. I forget to take my 2nd pill alot on Sunday and I have more trouble staying awake. I have tried only taking 1 pill in the morning and only half of one at lunch but I just don't seem to function the same at work. I would like to get pregnant but I just don't know if I can live without my modafinil.
Hi!
Please forgive my question. Are you currently working? If you are maybe you could take a leave of absence. Then get off it for awhile and have a child and see how you do from there.
The other factor is how long have you been taking it?
“Hope springs eturnal”
The very best to you figuring this out.
Sincerely,
Ranger
Many of the medical research respondents disagreed on misuse of modifinil (no surprise). Understood that this particular research on modafinal was to assess the enhancement effects on human cognition, and in this study, for 64 young, healthy adult volunteers. I'm assuming these young (!) people were screened for participation, meaning no sleep disorders of any kind. (There is a study using 30-40 year olds, but that still leaves a lot of us out.) The results showed no enhancement and a slowing of response time. A couple documented benefits of modifinal for people with narcolepsy are increased and prolonged wakefulness and enhanced working memory (short-term memory). These two benefits alone would be reasons to prescribe modafinil to people without a sleep disorder like military, medical, and anyone who must be vigilant though not getting enough sleep.
I'm grateful for modafinil, but the most important question for me is what price am I paying for increased energy. As has been noted, there "ain't no such thing as a free lunch" no matter how miraculous the effects of the drug. Before modafinil I spent most of my time lying down and made no commitments for my time. Now, however, my time lying down is exclusively at night and I've dared make a couple of time commitments, not outside our home, but for my art. After 10 weeks using nuvigil I've also noticed a slight mood enhancement, though the increased quality of life alone may have produced this. Suggested benefits of modafinil I wished were true: weight loss and a reduction in jet lag. It's doubtful I'm going anywhere again where jet lag would be an issue, but weight loss? Where is that placebo effect when you need it. :-)
Hi,
I am currently working in a new job which is easier on me. Taking a leave of absence has occurred to me but I have been on modafinil or the name brand since I was 12 or 14 and I am 33 now. I finally have a job that I love and I want a child so thanks for the well wishes Ranger.
Ranger said:
Hi!
Please forgive my question. Are you currently working? If you are maybe you could take a leave of absence. Then get off it for awhile and have a child and see how you do from there.
The other factor is how long have you been taking it?
"Hope springs eturnal"
The very best to you figuring this out.
Sincerely,
Ranger
I find it so interesting how medications affect people. I’m prone to negative side effects, for example I got a depressive reaction to both modafinil and Xyrem. I take methylphenidate, 10 mg 2x/day minimum, with a more tolerable side effect.
Ranger, I suppose this is why the NHS is suspicious. I hope they can find a way of sorting out who should be getting the medication and who shouldn’t. There has always been a problem here with people selling their prescription drugs.
http://www.theguardian.com/education/mortarboard/2013/may/31/is-modafinil-safe-in-long-term
Ranger said:
Hello All,
Very interesting!
Show me the drug that treats the main issue/cause, not the symptoms, is not just endless selling drugs to us and does not cause serious side effects.
On another note I was very surprised England was not approving med's if you wanted them for narcolepsy. In the US all they do is try to "push drugs"...on people.
Thanks for allowing me to let it out a bit :)
Ranger
PS: http://en.wikipedia.org/wiki/Hippocratic_Oath
A quote of a short part of the "oath":
With regard to healing the sick, I will devise and order for them the best diet, according to my judgment and means; and I will take care that they suffer no hurt or damage.
Nor shall any man's entreaty prevail upon me to administer poison to anyone; neither will I counsel any man to do so. Moreover, I will get no sort of medicine to any pregnant woman, with a view to destroy the child.
Further, I will comport myself and use my knowledge in a godly manner.
Gave me migraines . Has anyone else suffered from migraine from being a teen . Mine stopped for years then modafinil and they started again .
Here modafinil is called: provigil. When first taking it, I experienced some relief: increased alertness, initial apparent calmness, improved short-term memory...I still had the overwhelming compulsion to sleep, and the need of 20' naps. I dont remember unbidden sleep attacks with automatic behaviour during work though. Anyhow, my mood and frequently verbal behaviour, became progressively antagonistic and aggressive - resulting in a DC at work. Needless to say, I discontinued that med. Also: where was the supposed intellectual high and resultant addiction? I NEVER enjoyed provigil!