Re: Wake-Up Pill for Excessive Sleepiness

I'm sorry if I didn't give you any hope please forgive me, This is what they do for me, This doesn't mean
they aren't going to help you, they might and if they do wonderful, please let me know if they do, Plus I
forgot to even say, I'm on PAIN MEDS. at the time I wrote what I did I forgot about them, This is why they
don't work for me, Dilaudid, 2 different strengths of Morphine, plus I take different meds. that make me tired,
Hope I made some since of what I just wrote, Sorry for what I said.

No I won't Dreamstalker!!! And Sharperjudy, thanks for the words of encouragement. I hope you have improvements too.

Deb

For better or worse, I am hyper sensitive to caffeine. Does all kinds of things to me stronger and longer than it does for the average person.

With it, I was able to medicate my excessive sleepiness for about 4-5 years.

But that's all it did. The harm Sleep Apnea did to my body and mind was still there. It just allowed me to avoid having to deal with one of the more intrusive symptoms. I probably would have sought treatment much sooner if it wasn't for caffeine.

If my choices were pills that would only cover my sleepiness and a tracheotomy (the apnea treatment nuclear option). I would choose a tracheotomy without a doubt.

Hi John,

I'm not saying I'll take the pills instead of treatment (in my case, mandibular splint). It's just that I feel no improvement in energy levels despite the sleep apnea obviously getting treated. Presumably my airways are now kept open and I'm breathing all night. Hopefully I'm now getting the required amount of oxygen and my internal organs and blood vessels are now going to be okay. However, I still feel yuk in the mornings, so maybe the medication will perk me up to have some energy and make me feel a bit more normal. If I have some energy I perhaps can exercise more and lose some weight and that will all help.

Deb

Debtheveg - I didn't notice if you mentioned what machine you were using (when you tried cpap) and at what setting(s). Maybe there are some clues there. Would you tell us that please?

Hi Hawthorne,

Sorry, can't remember the machine, but I had it at a pressure of 11 and used the swift nasal pillow thingy. It was set at a constant pressure of 11 for most of the time, though for two weeks they had it so it automatically adjusted, but I didn't get such good numbers then so it was put back to 11.

I think I had a hard time getting used to the machine as I usually sleep on my tum and actually seem to rotate a fair bit through the night which of course I couldn't do attached to a hose under the covers. The noise was minimal and I got used to the sensation of air being pushed through my nose, but didn't like being restricted in my nocturnal movements.

The mandibular splint isn't much fun either with the inside of my cheeks being roughed up over night and my jaw being out of alignment for a while each morning. However, if I have to do one or the other, it is my preference. If only I felt better in the mornings, I would be a lot more motivated about the whole thing.

Why does it have to be one or the other? When will they come up with an actual cure or permanent treatment that is easier to live with? I know I'm whinging and there's a lot of people a lot worse off, but I'm pretty miffed with the whole thing.

Deb

Hawthorne wrote:Debtheveg - I didn't notice if you mentioned what machine you were using (when you tried cpap) and at what setting(s). Maybe there are some clues there. Would you tell us that please?

She was titrated at 11cm but I don't think she ever checked her rental machine to see what it had actually been set at cuz she is not into obsessing over data ... which doesn't make a squat of difference if she did or didn't check the settings anyway cuz she only tried one mask that did not work for her. If you read the history of her posts on this forum, you will see the pattern is to wait for the "cure" and not to make CPAP work.

SHE did try a few masks and the nasal one was the one SHE found to be best for her. The data was checked regularly by doctors and all indications were that everything was running smoothly and working well. SHE used the machine all night, every night for the whole two months despite feeling worse than before treatment commenced.

I don't see any harm in hoping for something other than a lifetime of cpap use and do hope that there will be a cure in the future. Are you all so addicted to the machines that you wouldn't try an alternative if something comes along???

debtheveg wrote:SHE did try a few masks and the nasal one was the one SHE found to be best for her. The data was checked regularly by doctors and all indications were that everything was running smoothly and working well. SHE used the machine all night, every night for the whole two months despite feeling worse than before treatment commenced.

I don't see any harm in hoping for something other than a lifetime of cpap use and do hope that there will be a cure in the future. Are you all so addicted to the machines that you wouldn't try an alternative if something comes along???

I tried the banana alternative just last night ... didn't work.

It is not so much an addiction to the machine but rather to a treatment that works when applied correctly.

debtheveg:

Sorry to hear that things are not going well for you. Yes I am now addicted to the CPAP machine, but it has been a work in progress, almost 1.5 yrs. For me it took a long time to get to where I am, with trying everything I could find to make it work. I will not go into great depth on my experience, do a search and you will find it. Another thing that you can try, which helps with the turning from side to side, is a hose hanger, many styles, and one of the simple ones worked for me. Patience and the want too's is very important for success. As far as a cure I'm not holding my breath, no pun intended, medical research has spent a lot of time and money and haven't found a cure for a lot of things and I think OSA is at the bottom of the list.

Good luck and I hope you find the sleep that you need. I finally did and there's nothing like it.

Blessings

Fred

Forgot, after Church I think I gonna have some Prime Rib for dinner, forget the bacon wrapped filet.

Getting used to this therapy is not an easy thing for many people. I am wondering if you could try a machine again and train your self to not sleep on your side. I use a hose hanger and find it great for keeping the hose out of my way! A lot of different masks have come out in the last couple of years that work better - at least for me. I think there are other tummy sleepers on the forum who might jump in and give you some tips as to masks that might work for tummy sleepers. I say, in my profile, that the Snapp ins my favourite but, right now I am using the Swift LT and finding it to be very good. There is not much to it but I don't sleep on my tummy (in fact I am forced to sleep on my back - the only painfree position for me because I have Rheumatoid Arthritis quite badly).

Come on "tummy sleepers" any thoughts ?

It seems that some on this forum feel that giving you a hard time is helpful. I am not one of those!

The fact that you came back and are "hanging in" when the thread is sometimes very negative means, to me, that you want something that will help you. I know you initially cambe back asking about the "wake up pill" but you have stayed and listened to what people are saying.

A cure would be nice but------. I say the same thing about the Rheumatoid Arthritis I have had for 20 years. When I was first diagnosed with that, the medical profession was saying that with in 5 years there would probably be a cure!! Here I am 20 years later, and no cure. I have to still hang in there.

For me, the same is true of sleep apnea. I would like a cure but-----.

Hawthorne wrote: Come on "tummy sleepers" any thoughts ?

It seems that some on this forum feel that giving you a hard time is helpful. I am not one of those!

For tummy sleeping ...

First - route hose over top of head ... hanger system is good.
Second - use mask that won't shift when head lays sideways on sleep pillow (Swift LT works great for me but other masks work for others).

I think she gives herself a hard time by refusing to use CPAP. Remember, she came to this forum after she had decided to give up on CPAP treatment and continues to come here for advice for anything except CPAP.

BTW -

The best things come from difficult moments so don't fear them ... same goes for CPAP treatment IMO.

http://news.yahoo.com/s/ap/20090418/ap_ ... montalcini

debtheveg wrote:Hi John,

I'm not saying I'll take the pills instead of treatment (in my case, mandibular splint). It's just that I feel no improvement in energy levels despite the sleep apnea obviously getting treated. Presumably my airways are now kept open and I'm breathing all night. Hopefully I'm now getting the required amount of oxygen and my internal organs and blood vessels are now going to be okay. However, I still feel yuk in the mornings, so maybe the medication will perk me up to have some energy and make me feel a bit more normal. If I have some energy I perhaps can exercise more and lose some weight and that will all help.

Deb

You say "presumably" the manibular splint is working. Have you had a follow up sleep study to be sure that it is correcting your apneas? I didn't see anywhere that said so. It would be good to be sure that it is doing enough to correct the apneas, and increase your O2 sats. Apparently (I don't have personal experience), many people get no improvement in apnea with a splint, or don't get enough improvement. Checking that would be the first step, I would think.

Before finding I had sleep apnea, my doctor gave me Provigil, thinking my fatigue was due to illness. For me, Provigil was of no help during the day, but it kept me awake during the night. NOT what I needed.

I was vegetarian for 25 years before reverting to meat consumption, because it improved my health. I don't necessarily think it is essential to eat meat to be healthy, but I do know a lot of vegetarians eat too many carbohydrates, which are very sedating. I don't know what your diet is, but you might want to look into how carbohydrates affect you, and whether you might need to shift the balance in your diet. It is possible to get enough protein as a vegetarian, you just have to work harder at it.

debtheveg wrote: ......... The data was checked regularly by doctors and all indications were that everything was running smoothly and working well. ............

You don't trust me about an omnivore diet, but do trust me about this: Doctors checking your data doesn't fly. If you don't do it yourself you could well be getting a poor therapy. Poor therapy can often be improved by changing CPAP settings and tinkering with mask leaks.

I so agree with Rooster, this therapy needs to be hands-on day to day observations and tweaking by the patient. Our so called sleep "specialist" was absolutely no help except to tell me I was doing a "great job" with changing his original settings myself. Thank you.