Re: Wake-Up Pill for Excessive Sleepiness

Kiralynx · Post by **Kiralynx** » Sun Apr 19, 2009 5:37 pm

Deb,

Just for curiosity's sake, have you tried taking some sublingual B-12 caps first thing in the morning?

B-12 can be one of the hardest vitamins for vegetarians to get, since it is primarily found in animal foods. (Spirulina does have a form of B12, but it's not a form many of us can use.)

B-12 can also help "turn off" the night time hormones which tell us it's time to sleep. In fact, when I was in college, and some times, when we've been traveling and needed to stay awake, my husband and I have used significant amounts to stay awake instead of caffeine or something.

You might wish to check into this as a possibility.

roster · Post by **roster** » Sun Apr 19, 2009 5:47 pm

DoriC wrote:........... this therapy needs to be hands-on day to day observations and tweaking by the patient. ..........

That's an excellent way to say it.

But Deb, after you have your CPAP process optimized and stabilized, you will just do some data checks once or twice per week typically. It is not a burden in the long run.

kteague · Post by **kteague** » Sun Apr 19, 2009 9:54 pm

Just wanted to add that I do use Provigil, 200mg daily. I can take it and stil doze off and take naps. At those times I think, "Some good these pills are doing!" Then comes the day I forget to take it and I'm a total zombie, sleeping the whole day away, and realize, "Those pills really are doing some good."

My only thing about taking meds like these is I think it should be after being 110% certain there is nothing going on needing treatment. I know that at best my limb movements are poorly to moderately controlled and my sleep is still fragmented, but I also know that my cpap treatment is therapeutic. Do what you need to do. I'd just like to suggest you use a recording oximeter for a few nights just to be sure. Even if your oxygen is ok, there can still be sleep fragmentation.

I'm not addicted to cpap. I'm open to other things if they can be PROVEN as reliable as cpap. Since my OSA is severe, I'm not holding my breath (pun intended). Maybe your oral device is adequate for you, just be very sure.
Kathy

debtheveg · Post by **debtheveg** » Mon Apr 20, 2009 1:20 am

Hello Again,

Hawthorne and others, your comments and advice are very much appreciated. Other than one or two negative and unhelpful people, I thank you all for your interest.

As for being a vegetarian, I honestly don't believe that has much bearing on my tiredness. I've been one since 11 years old and I eat pretty well, probably better than most. I take vit B12 and Spirulina and also eat eggs which contain B12, so I think I have that covered.

I probably do need to do another sleep study at some stage whilst using the mandibular splint to make sure I am breathing all night.

My main question was to see if others, like me, still feel tired, despite apparent success with either cpap or splint, and if medications (such as provigil) help.

I think this forum attracts people who are successful with cpap or who are diligently carrying on hoping for success. There must be many who are miserable every night and just give up, so hopefully there will be a choice of treatments down the track. At the sleep apnea meeting I attended on the weekend, I sat next to a lady in her sixties who was saying she had been trying to make things work for 12 months and still felt awful each morning. She was ready to give up, put the machine in the cupboard and just accept she'll die ten years early.

Hawthorne, I do hope you get some relief from the discomfort and pain of your arthritis. My aunt, now in her 80s has been crippled and suffered terribly with arthritis since she was 6 years old. So it is with reluctance that I whinge about sleep apnea as I know there are far worse afflictions out there. But at the same time, if we collectively don't jump up and down about it and just accept a treatment that was developed twenty odd years ago, there won't be changes for the better at some stage.

Let's hope for clever people out there developing better treatment for all our problems!

Good health to all,

Deb

DreamStalker · Post by **DreamStalker** » Mon Apr 20, 2009 7:17 am

Well shame on those two negative unhelpful people!

Do let us know if and when you find that miracle OSA cure ... I'm sure Johnny would appreciate a heads-up on any pending career change.

roster · Post by **roster** » Mon Apr 20, 2009 7:58 am

debtheveg wrote:....... Other than one or two negative and unhelpful people, ........Deb

That makes three negative comments.

SleepyRose · Post by **SleepyRose** » Mon Apr 20, 2009 8:02 am

Hi Deb, I just wanted to chime in real quick.
Im finally used to CPAP, excellent numbers, blah blah.

I drag myself out of bed every day and I'm exhaused most times and I know Im not alone. Ive had every test known to man so I started on Provigil. Not only does it not make me feel awake it makes me really agitated. I was so angry at my granddaughter the other day that it scared me. I NEVER lose it around those kids. No more for me.

I know this is mega negative but its my experience.
Everyones different.

Hawthorne · Post by **Hawthorne** » Mon Apr 20, 2009 8:02 am

debtheveg - Thanks. I am managing my Arthritis quite well, as I am my sleep apnea. Never apologize for looking for something that will work for your particular condition just because someone else may be worse off that you with other conditions. That doesn't make your situation any less stressful or any less in need of effective treatment.

I think though, as I think through this thread, that you need to have another sleep study ASAP with your appliance in, to see how effective it is in managing your sleep apnea. If the results are poor and indicate that your sleep apnea is not being treated effectively, I think you need to reconsider trying again with cpap. You know, of course, that extreme fatigue is not the only consequence of poorly treated sleep apnea. Without effective therapy you are leaving yourself open to far more serious conditions.

seamonkey21 · Post by **seamonkey21** » Mon Apr 20, 2009 9:38 am

I've taken provigil for quite a while. its very helpful in keeping me going during the day. it doesn't make you hyper, like caffine, just less sleepy...its a hard thing for me to describe. it also helps me concentrate. however, if my insurance plan didn't cover it, i absolutely could not afford it - it would for $400 for a 30-day supply here.

debtheveg wrote:Hi Everyone,

I've been to a OSA support group meeting today where my sleep specialist was a guest speaker.

Amongst many questions and topics he spoke on, was the subject of still being sleepy and feeling awful in the mornings despite cpap (or in my case, mandibular splint) compliance. Last year I tried cpap for two months, feeling worse each day than before treatment. I've now been using the oral device for two and a half months still with no improvement. When on cpap, all readouts indicated it was working and my apneas had all but ceased.

However, the specialist said today, that in his experience, there is a large minority of people who, despite compliance and all indications of therapy working, patients continue to feel awful and get no benefit. He thought perhaps 10 to 25% of patients. I obviously fall into that category.

He mentioned that he can prescribe one of two medications available that make you wake up and feel more energetic. The first he mentioned - which I can't remember the name of - he said was expensive and not subsidized by the (Aus) government. The second (again I didn't take note of the name) he said works well but got a bad reputation in the '60s. He reluctantly prescribes the second as he has to write to the Dept. of Health for permission to use it as it can cause bad side-effects, some being moodiness, a few other things and ... death!

Does anyone have experience or knowledge of these medications. I see him again in a few weeks and I definitely will ask if the first one might help me. If it's that expensive, I'd happily just use it one or two days a week - anything not to feel this bad ALL the time.

Thanks,

Deborah

LinkC · Post by **LinkC** » Mon Apr 20, 2009 9:46 am

cpapsue wrote:I have no idea what the other medication might be, sorry.

Yeah, I don't remember the names of the drugs *I* took in the 60s, either...

carbonman · Post by **carbonman** » Mon Apr 20, 2009 10:36 am

debtheveg wrote: Other than one or two negative and unhelpful people, I thank you all for your interest.
Deb

Presenting a message that does not mesh w/what is easy and convenient for you, must be the unhelpful catagory.
I repeat my message to you that I posted on 10/26/08.
Still rings true today, for me and for you.
Thank you for the opportunity to review.
All the best to you!

carbonman wrote:
The psychology of cpap involves personal introspection, which is difficult
in many cases and down right scary to some. CPAP requires one to
step outside their routines and comfort zones, and in some cases
to leave them behind, for good.

I think many that start cpap suffer from a low frustration tolerance.
It may be wise to forcefully bring your LFT to the surface, and realize
that without consciously and deliberately enduring various kinds of discomfort,
you have little chance of changing your situation.
Blame the delaying of your therapy efforts but never blame yourself
for this delay. Blame the mask. Blame the noise of the machine.
I overcame my LFT through my desperation for some relief from the
chronic fatigue and pain I had lived w/for years.
It is pointed out here time and time again, that the discomfort of
the mask is, infact, small compared to the affects of OSA.

debtheveg, maybe your chosen name is telling about how you view yourself.
There may be an important message there, for you.

THANK YOU! for posting your thoughts.
They provide the picture from where I have come,
and that I am indeed, on the correct path.....
that the discomfort, frustration and "annoyance",
has been well worth the effort.

Kiralynx · Post by **Kiralynx** » Mon Apr 20, 2009 1:17 pm

debtheveg wrote:As for being a vegetarian, I honestly don't believe that has much bearing on my tiredness. I've been one since 11 years old and I eat pretty well, probably better than most. I take vit B12 and Spirulina and also eat eggs which contain B12, so I think I have that covered.

I probably do need to do another sleep study at some stage whilst using the mandibular splint to make sure I am breathing all night.

My main question was to see if others, like me, still feel tired, despite apparent success with either cpap or splint, and if medications (such as provigil) help.

Deb,

My observation on vegetarian / B12 issues is more a matter of nutrition than any comment on your being a vegetarian. Vegetarians may have an issue with insufficient B12, just as people consuming the SAD (standard American diet) may have issues with cholesterol and other situations. I'm not saying this as a criticism of vegetarianism.

Me, I'm an omnivore. I get plenty of B12 in my diet -- but since my cancer surgery a year ago, it turns out that I need significantly more B12 than I used to. Even CPAP hasn't eliminated my need for 3000 mcg of B12 first thing in the morning. Why? I don't absorb B12 the way I ought to. Probably undiagnosed celiac disease (but I'll be d@mned if I'm going to eat grains again for the sake of a blood test!) as indicated by a high RDW.

My Bipap Auto SV is working amazingly well for me. The pain issues which led to my diagnosis are almost nonexistent now. But I still need a level of B12 far above "the norm" that most doctors would look at.

CPAP or nutrition -- doesn't matter what "should" be happening, or if you meet the some doctor's mythical norm. If you are still tired and feeling bad, then the doctor isn't doing his/her job and finding out why, instead of slapping the band-aid of a prescription on the problem.

Doctors are only human... and some of them can be remarkably stupid. My (now former) PCP told me that the gut cramps and post menopausal bleeding which were the initial symptoms of my endometrial cancer would clear up if I'd just stop stuffing my face and loose some weight!

As a consequence, while I understand your reluctance where CPAP is concerned, I applaud your willingness to get another study done to see if the mouthpiece is doing its job.

But what if it isn't? What will you do then?

SuperSnoop · Post by **SuperSnoop** » Mon Apr 20, 2009 5:12 pm

I have been on 400 mg of Provigil for 2 years and do not know what I would do without it. I have been on a CPAP at 12 for 12 years and recently changed to a BiPap at 16/12. Before any of you judge taking meds you must 1st walk in those of ours shoes. Even with a full face w/minimal leak and <5 AHI which is great I could not keep totally alert. I work out 6 days a week, eat a proper diet and do not take any extraordinary unusual meds.

debtheveg · Post by **debtheveg** » Mon Apr 20, 2009 6:11 pm

Hi again,

Well, if nothing else, I think this discussion just proves that one size does not fit all. If I was a bit confused before I asked, I think I'm now completely bamboozled as everyone who is, or has used provigil, gets something different from it. I guess that is probably true of most medications and just proves how complex and different the human body is in the way it reacts to different chemicals.

I think the fact that I am not currently using cpap seems to worry a lot of you and perhaps, therefore, I'm not welcome to be on this forum. I was simply seeing if others experience the tiredness that I do and your experiences of using medications to rectify the situation. Most of you have been very helpful, a couple downright nasty - so I won't bother you any more.

In case you're interested, I've made investigations and found there is a medical research institute specialising in sleep problems in Sydney, about four hours drive north from me, where they require volunteers for many sleep issues including sleep apnea. I'll be following that up and am happy to be a guinea-pig for further research. You can have a look at 'woolcock.org.au'. I imagine there are many similar places in the U.S.

Thanks again,

Deb

DreamStalker · Post by **DreamStalker** » Mon Apr 20, 2009 8:03 pm

debtheveg wrote:.... and perhaps, therefore, I'm not welcome to be on this forum.
.... Most of you have been very helpful, a couple downright nasty - so I won't bother you any more.

.... I'll be following that up and am happy to be a guinea-pig for further research. ....
Thanks again,

Deb

Oh c'mon ... nobody has been negative, or unhelpful, and certainly not nasty.

You simply don't want to hear that in order to "treat" (not cure) your OSA, you need to make CPAP therapy work. We don't know what the mental block is but we are all simply trying to get you to somehow give CPAP an honest trial ... stay and let the CPAP knowledgeable members help you take control of the therapy yourself and not leave it up to your "specialist".

But go ahead and be a guinea-pig if that is what you wish to do.

... but please spare us the guilt trip ...

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