Modafinil: the last resort?

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Shore Snorer
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Modafinil: the last resort?

Post by Shore Snorer » Sun May 25, 2014 5:13 am

I recently saw a really good sleep doc. He knew exactly how to read a Sleepyhead report, and was able to see my AHI and leaks were both fine. He said, "Clearly there's no need to put you through another test just to verify what the CPAP data is already telling us." When I couldn't remember which mask I used, he asked me a few questions and concluded (correctly) what I've got. He asked a few more questions and ruled out narcolepsy (correctly, at least in my opinion). He listed to my experience of going without drugs and trying different prescription drugs: some were awful, some were helpful, and as I've said before, no weapons should be banned in the war against insomnia.

I've got many months of great CPAP compliance, and the good numbers to prove it. I've established good sleep hygiene habits. I exercise regularly. I'm eating right, and I'm losing weight. I totally abstain from caffeine. I've avoided sleep onset insomnia. I've finally found a bedtime snack routine that Works For Me (tm) to beat sleep maintenance insomnia.

I still wake up every morning feeling tired, and I still drag myself groggily through the day, every day.

He diagnosed me with "residual sleepiness." I think that's Medicalese for "CPAP compliant, still wake up feeling tired, still groggy through the day."

He then prescribed modafinil.

I'm really nervous about this, but I've done my homework and I think I know how to proceed:
  • Avoid building a tolerance by taking it on weekdays but not weekends.
  • Put together a to-do list each day before taking it (modafinil helps focus on details but makes it hard to think about the big picture).
  • Avoid it when I need to think creatively more than I need to be able to focus on details?
  • Hope my insurance covers it.
  • Pray it doesn't screw up my sleep.
Anyone have any experience or advice?

I'm worried I won't be able to tolerate modafinil. I'm terrified that I'll take it, tolerate it, and STILL wake up tired and be groggy all day. If this doesn't work, neither I nor my doctors have any clue what to try next.

I really hope this helps me.

houndlover
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Re: Modafinil: the last resort?

Post by houndlover » Sun May 25, 2014 6:45 am

I am currently on it. My PAP data was great. Now I will say I am going to be tested for narcolepsy in June because my sleep doc still thinks that is a possibility for me so our situation isn't 100% the same.


I will say I was told to take it everyday. Although I have read on here people feel like they get sensitized to it, studies with objective testing show that doesn't happen.


The first 2 or 3 nights on it I woke up in the middle of the night and was awake for an hour or two. Was it the drug or coincidence, I have no idea, but it hasn't happened again. If it happens to you, you might want to try using the drug daily rather than yo-yoing your body. I think the yo-yo effect you are wanting to try sound more rough on the body than just being tired.


I don't think the results or effects are going to be as drastic as you are planning for. Just know once you take it, it still takes 2 hours to start working. If you eat before/when you take it, it can stretch that time out further although it doesn't make the drug less effective. It just slows the start time.

This drug is nothing like stimulants used in ADD. Honestly, I still feel tired every single day. I just am able to fight the need for daytime sleep more. I feel little to no affect on focusing/being creative. It is a drug just to help you physically stay awake.

Edited: I forgot something else. Now that I take it daily...once it gets past that 15 hour half life mark....I am DONE! My body goes on total shut down. Typically, this is a good thing because I am home and getting ready for bed anyway.

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Shore Snorer
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Re: Modafinil: the last resort?

Post by Shore Snorer » Mon May 26, 2014 4:01 pm

More information than you'll ever want: http://www.gwern.net/Modafinil

(Stop reading once you get to "We’ll ignore getting a legitimate prescription ...")

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Re: Modafinil: the last resort?

Post by chunkyfrog » Mon May 26, 2014 4:16 pm

Such an odd choice for a name.
It sounds more like a synthetic fiber.
"The bride's mother wore a beige modafinil frock."

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codinqueen
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Re: Modafinil: the last resort?

Post by codinqueen » Mon May 26, 2014 5:06 pm

Look up the company that makes it- Cephalon I think, website. There used to be a coupon there to get you to $50 co-pay, if your insurance covers it.

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kteague
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Re: Modafinil: the last resort?

Post by kteague » Tue May 27, 2014 1:00 am

Just thinking and wondering - your data says your OSA is therapeutically treated, but how would you describe your sleep quality? Do you remember waking up often at night? Do you sleep pretty much in place or is your sleep restless or fitful? May be way off base, just wondering if limb movements during sleep could be an issue with you. You wouldn't be the first to have conquered the OSA yet still found themselves with non restorative sleep, only to discover their legs were repeatedly disrupting their sleep. Have you ever been told or have any reason to think you move a lot during the night?

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Shore Snorer
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Re: Modafinil: the last resort?

Post by Shore Snorer » Tue May 27, 2014 5:37 am

Thanks, houndlover.

A few questions:
houndlover wrote:I have read on here people feel like they get sensitized to it, studies with objective testing show that doesn't happen.
Citation requested, please?

Citation suggesting no tolerance:
Randomized trial of modafinil for the treatment of pathological somnolence in narcolepsy: "for up to 40 weeks of treatment ... efficacy was maintained, suggesting that tolerance will not develop with long-term use"

Citations with a mixed message:
Chronic treatment with moda?nil may not be bene?cial in patients with chronic fatigue syndrome: "tolerance may have developed to any shorter-term bene?cial effect" vs. "no tolerance to the sleepiness-reducing effects of moda?nil has been reported in patients with narcolepsy or idiopathic hypersomnia, even after 2-3 years of treatment"
http://www.gwern.net/Modafinil#tolerance

Citations suggesting tolerance: Lots of anecdotes on the internet.
The first 2 or 3 nights on it I woke up in the middle of the night and was awake for an hour or two. Was it the drug or coincidence, I have no idea, but it hasn't happened again. If it happens to you, you might want to try using the drug daily rather than yo-yoing your body. I think the yo-yo effect you are wanting to try sound more rough on the body than just being tired.
Noted; I'll certainly keep that in mind.
Honestly, I still feel tired every single day. I just am able to fight the need for daytime sleep more. I feel little to no affect on focusing/being creative. It is a drug just to help you physically stay awake.
Except for the "still feel tired" part, that (1) is contrary to everything else I've read and (2) suggests I'm totally screwed (see also the title of this thread).
...once it gets past that 15 hour half life mark....I am DONE! My body goes on total shut down. Typically, this is a good thing because I am home and getting ready for bed anyway.
Agreed with "good thing"; having fought so hard to sleep (and breath) through the night, the last thing I want is something that reduces how much sleep I get. (I know that's the intent of some naive people who use it. You don't know what you've got 'til it's gone....)

Good luck with the narcolepsy testing.

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Shore Snorer
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Re: Modafinil: the last resort?

Post by Shore Snorer » Tue May 27, 2014 5:51 am

kteague wrote:Just thinking and wondering - your data says your OSA is therapeutically treated, but how would you describe your sleep quality? Do you remember waking up often at night? Do you sleep pretty much in place or is your sleep restless or fitful? May be way off base, just wondering if limb movements during sleep could be an issue with you. You wouldn't be the first to have conquered the OSA yet still found themselves with non restorative sleep, only to discover their legs were repeatedly disrupting their sleep. Have you ever been told or have any reason to think you move a lot during the night?
Very reasonable questions.

My Zeo reports that I'm getting a good quantity of good quality sleep.

Neither my sleep studies nor my spouse report that I'm suffering from periodic limb movement disorder.

The only reason to suspect my sleep quality is that I feel tired when I wake up and tired all day.

There's one remaining possibility I haven't ruled out. Maybe my feelings of fatigue have nothing to do with sleep. Maybe there's something else wrong with me. My doctors and I have ruled out the obvious suspects: the most likely hormone levels are fine, the most likely vitamin deficiencies don't show up on a blood test. At this point, if my fatigue and inability to focus aren't caused by poor sleep, I don't know what they might be caused by. I don't even know how I'd begin to find out what they might be caused by. (The only steps I've got left are mail-order blood tests and genetic analysis. To me, that's really scraping the bottom of the barrel. That's beyond the last resort.)

Here's hoping the last resort I've got left is the last step in getting better.

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Shore Snorer
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Re: Modafinil: the last resort?

Post by Shore Snorer » Fri Jun 13, 2014 6:32 am

I've been on modafinil for about two weeks. I was given a fairly typical dose; I started on half a pill every morning for a week, then a whole pill every morning. Here are my experiences:
  • Driving: Shore Spouse says I'm driving somewhat better on days I take modafinil, especially when I take a half dose. That's one concern allayed.
  • Creativity: Apparently unaffected.
  • Sleep disruption: Doesn't seem to be any.
  • Daytime sleepiness: Significantly reduced. (On rare days following nights of poor sleep, I still sometimes nap in the afternoon. I have less desire, less need, and less ability to nap than I used to; this is a good thing.)
  • Loss of appetite: Nope
  • Feelings of fatigue: No improvement (expected).
  • Ability to focus: Little to no improvement.
All but the last are good news, but that last was the whole point of the exercise.

(There is a gene that seems to determine modafinil response.)

I'll continue with CPAP plus all my sleep hygiene habits; without them I'm in even worse shape. But as I said at the beginning of this thread: "I'm terrified that I'll take it, tolerate it, and STILL wake up tired and be groggy all day. If this doesn't work, neither I nor my doctors have any clue what to try next."

Time to look for something beyond the last resort.

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DeadlySleep
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Re: Modafinil: the last resort?

Post by DeadlySleep » Fri Jun 13, 2014 7:11 am

Shore Snorer wrote: I'll continue with CPAP plus all my sleep hygiene habits

The oft-repeated mantra of this forum adds to your two points these two,
-regular moderate exercise
-healthy diet

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DeadlySleep
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Re: Modafinil: the last resort?

Post by DeadlySleep » Fri Jun 13, 2014 7:23 am

Modafinil: the last resort?
Next to last. Gun to temple is last.

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Shore Snorer
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Re: Modafinil: the last resort?

Post by Shore Snorer » Sat Jun 14, 2014 6:25 am

DeadlySleep wrote:
Shore Snorer wrote: I'll continue with CPAP plus all my sleep hygiene habits

The oft-repeated mantra of this forum adds to your two points these two,
-regular moderate exercise
-healthy diet
Yep. From my original message in this thread: "I exercise regularly. I'm eating right, and I'm losing weight."

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Jay Aitchsee
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Re: Modafinil: the last resort?

Post by Jay Aitchsee » Sat Jun 14, 2014 11:47 am

Shore Snorer wrote:I've been on modafinil for about two weeks. I was given a fairly typical dose; I started on half a pill every morning for a week, then a whole pill every morning. Here are my experiences:
Driving: Shore Spouse says I'm driving somewhat better on days I take modafinil, especially when I take a half dose. That's one concern allayed.
Creativity: Apparently unaffected.
Sleep disruption: Doesn't seem to be any.
Daytime sleepiness: Significantly reduced. (On rare days following nights of poor sleep, I still sometimes nap in the afternoon. I have less desire, less need, and less ability to nap than I used to; this is a good thing.)
Loss of appetite: Nope
Feelings of fatigue: No improvement (expected).
Ability to focus: Little to no improvement.
Snorer, those results look pretty good to me. I'm curious why you decided to abandon the trial. After all, it would appear you took a full dose for only one week and did not experience any significant side effects.
While traveling recently, I read a newspaper article regarding the reduction of fatigue over time by taking modafinil daily. Unfortunately, I lost the reference so I can't cite it, but there seems to be lots of positive references regarding the drug and few negative. I've added a few more below.
I have taken modafinil in the past and found the positive effects to decline fairly quickly after starting, leading me also to abandon the drug after a short while, even though I experienced no adverse effects. After reading the newspaper article, I wonder if I gave the drug a fair trial. It occurs to me that that my subjective measure of efficacy could have been flawed. I measured the drug's effectiveness by how much better it made me feel immediately (within an hour) after taking it compared to how I felt when I first arose. Now it's possible, that after taking the drug for some days, I began to feel better when I first arose making the drug seem not to have the effect that it did in the first days.
Since I did not experience any significant adverse side effects when taking the drug and given all the positive references, I think I may try it again. This time giving it more like a month or so before I decide on its overall efficacy.

http://europepmc.org/abstract/MED/16171291
12 week study 2005
CONCLUSIONS: These results confirm previous shorter-term controlled trials, indicating modafinil is a useful adjunct therapy for improving wakefulness in patients with residual excessive sleepiness associated with obstructive sleep apnea/hypopnea syndrome who were treated with nCPAP.

http://jnnp.bmj.com/content/72/2/179.short
Conclusions: These data suggest that 200 mg/day modafinil significantly improves fatigue and is well tolerated in patients with MS.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2654794/
cites several studies which suggest the possible mechanism of action of modafinil and some effects.

On a slightly different subject: You didn't mention what your level was, but I think I feel better when my serum Vitamin D3 is around 50ng/ml rather than around 30 (normal) where it is without supplementation. To maintain 50, I take 2000 iu daily.

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Shore Snorer
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Re: Modafinil: the last resort?

Post by Shore Snorer » Sun Jun 15, 2014 7:26 pm

Jay Aitchsee wrote:Snorer, those results look pretty good to me. I'm curious why you decided to abandon the trial. After all, it would appear you took a full dose for only one week and did not experience any significant side effects.
Though I didn't explicitly say so, I haven't abandoned modafinil. I'm staying with the half dose, since it worked as well as or better than the full dose.

I just wish it helped more than it has so far.
I have taken modafinil in the past and found the positive effects to decline fairly quickly after starting
See upthread for discussions about possible modafinil tolerance.

(Elsewhere upthread: "the most likely vitamin deficiencies don't show up on a blood test.")

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Jay Aitchsee
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Re: Modafinil: the last resort?

Post by Jay Aitchsee » Mon Jun 16, 2014 7:35 am

Shore Snorer wrote:Though I didn't explicitly say so, I haven't abandoned modafinil. I'm staying with the half dose, since it worked as well as or better than the full dose.
Thanks for the clarification, Snorer. I did misunderstand that you had abandoned modafinil. Interesting regarding your half vs full dose findings.
Shore Snorer wrote:(Elsewhere upthread: "the most likely vitamin deficiencies don't show up on a blood test.")
I did catch that. I only mentioned Vitamin D because some believe the lower end (30ng/ml) of the "normal" range is too low, thinking instead, it should be about 50ng/ml and indeed, I seem to feel better with a serum level above 50.

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