Anyone heard of AVE?

[Liam1965]

I've gone back and forth on whether to post this, because it relates to quality of sleep but NOT necessarily to apnea. Also, it strikes me as one of those kind of "out there" remedies that may not have any scientific basis behind it.

On the other hand, my initial results seemed good, and I know a lot of people on here suffer from insomnia along with their apnea, so perhaps I should mention it.

As background information, my Dad has been fairly recently diagnosed with Parkinson's. As a part of his treatment, his doctor put him on a device called an AVE (for Audio Visual Entrainment). This is basically a set of goggles and headphones that flash lights and beep tones into your eyes and ears in certain patterns that are supposed to help stimulate/regulate brain function on the two sides of your brain.

According to the "science" behind it (and there is some but not a whole lot that I've been able to find), these stimulii do show a measurable effect on brainwave patterns on the two sides of the brain, even after a session is over. Moreover, faster frequencies seem to enhance brain functioning while slower ones seem to calm it.

As a result, they claim to be able to help treat depression by exciting the one lobe of your brain (and forgive me if I forget which side depression supposedly lives in) and calming the other.

But in the mean time, it also supposedly helps with meditation and sleep.

Now, my Dad has clearly been helped by it. His memory is better, his recall of words, and the slurring of his speech have all gotten better since he started using this (since the PD, Dad has sounded drunk whenever you talk to him (and he doesn't drink), which has been significantly less pronounced since starting on the AVE machine).

For me, the first two nights I used it, I slept through the night and felt quite refreshed in the morning, which is highly unusual for me.

On the other hand, subsequently to those first two nights, I've found that I can't get through a whole session before I start feeling... odd, like I'm not properly connected to my body, and this feeling persists after the session ends, so that I have trouble getting to sleep.

So I make no guarantees. On the one hand, it could be another snake-oil salesman, using scientific sounding babble to sell a glorified light show at inflated prices. On the other hand, I do see improvement in my Dad that correlates much more closely with his use of this tool than with any of his medications.

Mom, by the way, finds that she can't use it because she can't relax, she finds that as soon as the machine is on, her mind starts racing over all of the things should could and should be doing with her time while she's wasting it lying down with flashing in her eyes and bloops in her ears.

Hopefully this long and rambling brain dump is of use to someone.

Liam, talkative.

[christinequilts]

meant as a PM

[kteague]

Hi Liam.

Just went and did some reading. Since I was looking for some literature not just from folks selling the device, looked at some research results over on PubMed. Seems your family experience correlates with what's been shown in studies, that the response to AVE is individualized. Since PLMD is treated by the same meds as Parkinson's I am interested in reading a lot more. I will have a followup appointment with a doc at a Movement Disorder Center in a couple weeks. (He's waiting on a consult from a Toronto doc.) Will ask him their view on AVE. Was your father's benefit from AVE limited to speech or was movement helped?

Guess for those who benefit, it's a godsend. Since it's not for everyone, it could easily get bad publicity. Some of what I read indicated that pre-treatment baselines were predictors of its effect. Wonder if your family would bear that out.

Thanks for something at least to take a good look at.

Kathy

[Julie]

And you should also consider that treating a patient who hasn't been diagnosed as needing the treatment (which is geared towards some kind of pathological process) should have a different result, otherwise you could assume the patient who has a 'condition' may not be treated effectively by the therapy (if there's no difference between them and a 'normal' patient after therapy). Be glad it's not 'working' for you - you obviously don't need it, but it could be skewering your normal state!

[Liam1965]

Ah, but the point was that it was supposed to help with my insomnia and my depression. So while I have not been diagnosed with PD, that's not the only condition this is purported to treat.

Which, by the way, is one of the strikes against it in my book. The concept of the panacea (or cure-all) doesn't seem to exist except in fiction. The more things something purports to treat, the less likelihood (in my experience) that it does anything at all well.

For instance, some chiropractors in my life have told me that Chiropractic helps bad backs. And lo and behold it does. But I've run into others who tell me it'll fix everything from colds to depression to mental insanity (I had one guy tell me that he wished he could give Saddam Hussein a few adjustments, he honestly believed that Hussein was a straight-spine away from being a good guy). These are the chiropractors whom I don't trust, because there's no evidence for their claims.

Similarly, there's the food supplement industry. There are some herbal tea ingredients which purport to help one thing or another, and do have some beneficial effect. There are a few herbal teas which do help clear congestion or contain natural sleep aids. On the other hand, there are the people who are always trying to sell things like "shark cartlidge" because in a world where no one yet has come up with a reliable, simple cure for cancer, the makers of this stuff claim that as one of many beneficial effects of their product.

So I'm a little bit leary of one product which claims to treat PD, depression, insomnia, the mental fog of aging and even claims it can help you train harder and achieve more in your physical exercises.

But I'm rambling. The point is that this is not a case of picking up my father's PD drugs and wondering why something designed to combat some PD symptom didn't help me, this is a case of trying something which claims to help both my Dad's symptoms (because he has PD) and mine (because I have depression) and my Mom's (because she suffers from insomnia).

Liam, two long, rambling, serious posts in a row. He's going to lose his humorist license if he's not careful.

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[elliejose]

Liam, I see there are quite a few light and sound therapy gizmos out there. Do you mind telling us which the md prescribed for your dad and that you are using? It's good to see you are both getting some good results from it.

[Liam1965]

Do you mind telling us which the md prescribed for your dad and that you are using?

I had intentionally omitted that information from my initial posts on the topic, because I didn't want this thread to read like an advertisement when I have no affiliation (other than occasional use of the product) with the company.

However, the one in particular recommended by my Dad's doctor is the "David PAL" from Mind Alive.

Liam, feeling cheap and dirty and commercial.

[elliejose]

Thanks, looks as tho this is something that may be beneficial to my son. BTW, are you or aren't you using cpap at the moment?

[Liam1965]

At the moment I am not. I have been unable to sleep at all with it on, for several different reasons. First, I can't stop thinking about the machine and "fighting" against it to breathe out. Trying it in combination with the AVE (if I can get it to reliably help me sleep) might work, but the second problem is much bigger and I haven't found a good work around for it yet:

I get pressure induced centrals. If I start to fall asleep, my brain apparently decides that the machine is breathing for me ENTIRELY, and so stops trying to breathe at all. If I start to fall asleep, I wake up gasping and panting and feeling like I'm smothering... because I've stopped breathing. Not a classical OSA event, my throat is open, my nervous system has simply stopped telling my lungs to pump.

That's why I wasn't sure initially whether to post this here. I don't know if it works (it's hard to differentiate between something working and placebo effect), and I also don't know whether helping someone to sleep more deeply is a good thing when that person might NEED that shallow sleep in order to wake before they suffocate on their own closed airway.

I'm very clearly not a doctor, I'm simply relating my experience with the machine.

Liam, trying to help, possibly doing more damage than good. Much like his dating life before he met Janet.

[dsm]

Liam,

Interesting thread - thanks for the heads up

DSM

[elliejose]

Sounds like the Respironics new Bipap auto SV may be worth looking into. Don't know what your insurance situation is but it may be worth a looksee. My bipap auto has helped tremendously with the fight to exhale. It's almost like breathing normally. And afraid to say it aloud, but the aerophagia is gone also.

[blarg]

Liam,

I wasn't around for the beginning of your saga, but I have always wondered why you didn't end up looking into BiPAPs. If not just a week long rental trial from your DME to see if you find it more pleasant.

Anyway, thanks for hanging around even if you're afraid we're gonna pounce on ya.

[Rabid1]

Liam,

I know it's only been a short while, but do you see yourself using this device long-term?

As for you apnea, have you looked into the Resmed VPAP III Adapt? It's been making quite a splash.

Rick, who wishes Liam well.