Ok DU Friends, Need Your Help Again! Re:Provigil/Modafinil

[OPERATIONMINDCRIME]

I suffer from severe chronic fatigue syndrome and recently went for a sleep study that showed my brain waves aren't normal when I sleep but they couldn't figure out exactly what was going on. They said a new technology is coming called broad spectrum analysis but isn't available yet.

In the meantime, they just prescribed me Provigil/Modafinil for the severe fatigue. I read some stuff online and it seems like it may be a hell of a good drug.

Does anyone here have any experience with it? How long does it take to feel the effects after swallowing the pill, an hour? A few hours? Did it help you?

Anyone who knows I'd appreciate any input you have.

Thanks!

[OPERATIONMINDCRIME]

1. Seriously? No One?

[KitchenWitch]

2. I got nothin' but I will kick this for you...

[Redstone]

3. I talked with my shrink about this last week, but in a different context.

I was asking about its applicability to ADD, but we ended up talking about it in general...my shrink is a damn sharp guy who lookse into all drugs at some depth, and he's positive about Provigil for its on-label uses, and some off-label ones as well.

I can't give you any specifics such as you asked for, but my impression is that there's no downside to giving it a try. (Also, there's a magazine article somewhere online in which the reporter takes some and describes his experience. You'll find it with a Google search but may have to dig deep into the results.)

If you do end up trying it, I'd appreciate it if you could send me a PM with your experience afterward...

Redstone

[u4ic]

4. I haven't used it

and personally don't know anyone who has. I'm leery of using any stimulant, as it is likely that PWC's already have an injury of some type to the brain.

You might want to try http://www.immunesupport.com/chat/forums/index.cfm?b=FM . Also, remedyfind: http://www.remedyfind.com/rem.asp?ID=419

Are you taking anything for sleep? I don't know anybody with the condition who doesn't.

Did they say that a CPAP machine may help?

What is the broad spectrum analysis? Is it a type of testing for sleep disorders? I haven't heard of it before.

:hug: :hug: :hug:

[OPERATIONMINDCRIME]

6. I've Gone To ImmuneSupport For Years!

Great CFS/Fibromyalgia site. I take ambien every now and then, but it carries over to the next day for me so I generally reserve it for weekends only. CPAP won't help. I don't have any of the typical sleep disturbances. Mine is more in my brain activity. Ask my wife, I have a one in a billion brain LOL (though that doesn't mean good or bad. Some good, some bad LOL). They recommended me as a early trial for the broad spectrum analysis as it is a new technology that probes really deep into different levels of brain activity during sleep to get a far better determination of what's really going on. It's experimental I take it, and damned if I know if I even described it right. The Doc told me to research it on google to get a better understanding of it and I'll do that tomorrow.

[u4ic]

7. I've never tried the ambien

I use imovane and tryptophan. The former can't be found in the US, but I believe the latter was finally approved again.

Thanks for that info. I'm going to do a bit of research myself!

The abnormal brain activity is common...I can't remember the exact terms, but sleep waves (delta? maybe) while awake, and awake waves when one should be sleeping. I think it's usually done with an QEEG...I know Dr Pierre Flor-Henry here in my city was doing some brain mapping for PWC's with it. (this may or may not be what you're referring to)

Have you tried any Yahoo groups? CFSExperimental comes to mind.

[Floogeldy]

5. I don't know, but I'd sure like to grind some up and mainline it!

BWAHAHAHAHAHAHA!!!!!!!!!!!!!!!! With some peanut oil.

:)

[Pryderi]

8. Have you been tested for sleep apnea? You may need a CPAP machine

[OPERATIONMINDCRIME]

11. Just Got Done With My Sleep Study Last Week.

No Apnea, Restless Leg Syndrome, Snoring or otherwise but I already knew that. My problem is more taking forever to fall asleep, and then when waking up in the morning feeling I got run over by a truck, a feeling that doesn't go away the entire day. Basically just really bad Chronic Fatigue Syndrome.

If this medication works half as good as some of the reviews I've read online, it could change my life. Guess I'll just have to see what happens the next couple of days.

[Susang]

12. There's more to a CFS diagnosis than that

http://www.immunesupport.com/chronic-fatigue-syndrome-diagnostic.htm


BTW, I've been taking Provigil for two years now. It's extremely expensive and it took months to get it covered by insurance. Most days it helps, but it's not a miracle cure. Some days it doesn't even touch my fatigue. I'm used to it, I've had CFS for 8 years now.

If you don't have joint pain or swollen lymph nodes, I'd suggest getting some more tests done by your internist to find the source of your fatigue. You should rule thyroid, autoimmune disorders, etc, out before you medicate the symptom. Otherwise you could be masking the real problem and cause yourself more problems down the line.

[u4ic]

13. Have you ever crashed from it?

Any bad side effects?

Do you take anything to help you sleep?

I've known a few people in my immediate circle who have had 60%+ recovery from taking long term doxycycline. One who it helped alot didn't even have the sudden onset; it was gradual. Once I move, I'm going down that route to try...I've heard mixed results...some people do very well on it but when they go off, they slide back, others like the above people from my CFS group in town have had good success with long term abx (and have been able to go off it and have a life); some have had gut issues and have had to stop.

I've had some fairly good success with NAC and whey protein (goat's for me), giving myself b12 shots 3x week; d-ribose, and acupuncture. Still a long ways to go, though. I was bedridden for a few years, now I'm coming out of it more. I can drive and shop and socialize a bit again! :bounce: :bounce:

[Susang]

14. I was on ambien briefly

I didn't care for it, stopped taking after two weeks and ended up with horrible withdrawal symptoms. Turns out that Ambien can cause physical dependency, in spite of what they lead you to believe. It took about a week to get that crap out of my system. Now I stick with herbal tea and valerian root when I can't sleep.

My doctor put me on Lyrica and it's been pretty helpful. Nothing really helps with my fatigue when I'm sick, so I work more on changing my lifestyle. It's hard, I don't give in to change easily. ;-)

[OPERATIONMINDCRIME]

15. I've Had CFS For 13 Years Thank You.

Not sure why you assumed that my CFS was determined by a sleep study I had last week, but that assumption was ridiculously wrong.

13 years at a minimum I've suffered from CFS and have researched it, educated myself on it more than I challenge most ever could. I've used Pro Health Products and Immunesuuport since before you probably were even diagnosed. I appreciate you trying to help though, and Immunesupport is an incredible resource.

[Susang]

16. Thanks for the attitude

I won't bother responding to your posts again.

BTW, re-read your post, that's how I came the assumption I did. You didn't exactly give a detailed description of your medical history.

And does it really matter that much to you that you were diagnosed before I was? :eyes:

[OPERATIONMINDCRIME]

17. You're Welcome! :)

I know what I posted, and nowhere does it say that they diagnosed me with CFS afterwards. It did say that what I knew going in prior to the study was that they weren't going to find the typical things they look for in sleep studies, since mainly my problems stem from my severe CFS. But you read it wrong and then felt the need to preach to me about CFS and how it's diagnosed with a perception that I was a fool and thought that CFS was that simple but should be schooled on it. Fact is I know plenty about it as I've had it for years, and was a bit sensitive to someone acting all knowledgeable with it while undermining my own experience with the debilitating disease just because they didn't bother to inquire from me further. So don't assume so quickly that just because you have CFS, that no one else does or if they hint that they do they're probably just rushing to judgement from a quick diagnosis. Cause that's what you did here. You are right, I didn't go in depth, but rather than inquiring further you immediately defaulted to believing I had no idea what I was talking about when in fact it was a completely inaccurate assumption.

And of course it doesn't matter how much prior to you I was diagnosed. The point was to show you that the last thing I needed from you was a preaching about what CFS is.

You don't want to respond anymore fine, no biggie by my standards. But just know, as you should, that those that suffer from CFS take it very seriously as it is such a devastating condition. Don't be so quick to dismiss someone that says they suffer from it when you have no information yet at hand to have even made such an assumption, or you risk offending them.

[Pryderi]

9. dddd

[blue neen]

10. I've tried it.

I had severe fatigue problems after I had mono a while ago.

It definitely helps keep you awake and gives you energy throughout the day. I'd say it kicks in about a half an hour after you take it. I took a relatively low dose of it and would recommend that you start out that way.

Try not to take after about 1:00 in the afternoon or you'll have trouble going to sleep at night.