Hi everybody, I just want to post my story real quick and my TAP3 experience. Thanks for the great forum.

I’m a 25 year old male. I was previously a decently muscular 175lb 5’10” fit person; now I’m a 185-190lb less fit and a bit overweight person.

Background

My medical problems started two years ago. Prior to two years ago I was a very healthy person. Over the last two years I’ve developed a thyroid autoimmune disease, adrenal exhaustion, wacked out hormones, irritable bowel syndrome, chronic fatigue, mitochondrial failure (a highly-impaired Kreb’s cycle), immune system weakness (low white blood cell count), and strong heavy metal toxicity (lab tests showing high levels of mercury and arsenic in me).

Perhaps due to all of the above, for the last year and a half I wake up exhausted each morning. My legs feel tight and I can’t stand for more than 15 seconds without uncomfortable-ness and feeling very tired. I feel very dizzy and spaced out during most of the day, disoriented and such. I get 9 hours or sleep each night or more, but an hour after waking up when I go to the office I have a great desire to close my eyes and fall asleep. I also have extreme weakness in my muscles so even a simple task like holding a piece of paper or a pen is tiring.

The best way to describe it is to say it feels like somebody sucked all the energy out of me and I’m just a shell now. Like some alien ray gun zapped my “vital force” as some call it. I used to lift weights and exercise a lot but I can’t manage any of that now. Now I just try to haul my massively exhausted broken body through life’s necessary activities.

CPAP

In March of 2008 I tried CPAP for 2 months but I just couldn’t get used to it. I’d wake up about 15 times a night and take the mask off after about 3-5 hours. Over those two months I did have 2 nights that for whatever reason I was able to use the mask all night fairly successfully, and I did feel WAY better the next day. It was like night and day. So I KNEW that the CPAP did help me when I could use it…

TAP3

I just got the TAP3-NF a week ago. My dentist wanted me to use it for 5 nights in the “neutral” position (right in the middle of that -7 to 7 scale thing (he said my jaw was perfectly normal). He also said my tongue was high or something meaning my tongue is probably part of the problem.

The first day after using the TAP3 I felt maybe 2% better. I was still exhausted no doubt, but more optimistic. I don’t know if this was just psychological or physical.

I’ve so far adjusted it a total of 1 ¼ turns. I’ve read on this forum that some people need between 15-24 turns, so that would explain why I don’t feel good yet.

Dreams

Also, I should mention I read here and elsewhere that people start remembering their dreams after using the TAP3. This has absolutely happened to me even after the first night. I usually never remember my dreams…maybe only three of four times a year. But so far, almost every night I have dreams that I remember when I wake up. I’m not entirely clear why this happens or if it’s a good thing. I assume this happens because the more opened airway allows the body to go into REM sleep more frequently maybe?

I’ll update this as I continue to adjust the TAP3. I’m really hoping and praying to God that this will alleviate my massive exhaustion soon. Thank you for the support.

That's great, hang in there it does get better. My dentist who actually uses the device himself initially turned my 2 full turns, right up until I could fell the lower jaw being pulled. From there I've gone various amounts. I know where the "pain" threshold is (about 8 for me, jaw stays tender most of the day) and I currently have it set a tick over 7 and the jaw tenderness goes away after an hour or so, to go any further I'll have to do it in micro steps now. Personally (and this is just my opinion) if you're not having soreness now, I'd move it a half turn a night until you did. A lot of it is going to depend on the severity of your apnea too. Just ahve your dentist monitor the bite, so far mines not changed.


_________________
Read my ongoing story at Sleep Apnea Sucks

SO hows it going?

Just picked up my TAP 3 today!  Will see how it goes tonight.
Not the most comfortable thing... having your mouth tied shut :)

Thanks for the two comments from jwpegram and sociald.

I saw my dentist after 10 days and everything was fine. I'm moving up from 1/4 turns to 1/2 turns each night. He doesn't want to see me again until I adjust the TAP to it's full position (7mm).

I'm getting used to the device quite well. The first week I had the drooling and teeth pain problem, but now both are very minimal. I've been adjusting my device a half-turn (0.25mm) each night for the last week and I've had no jaw pain at all. The device is maybe 35% of the max adjustment.

I actually have now started to FEEL a difference. I used to feel massively exhausted each day after 10 hours of sleep, but now I just feel tired after 9 hours. That may not sound like much, but it's a big step for me. I still have intolerance to exercise and dizzy/lightheaded feelings, but there not as bad as before.

FYI, I still continue to dream most nights and remember those dreams. I used to almost NEVER remember my dreams.

So, the conclusion for now is I still don't feel refreshed in the mornings, but I feel a lot better than I used to, so I'm optimistic that things will continue to improve as I continue to adjust the device to it's full position. Thanks for listening! I'll keep you updated, and you do the same.

Good to hear. It'll get better from here but keep in mind you'll probably hit a point where you can't go a 1/4 or half turn, probably around 70%. If that happens, back off a little and make smaller turns further apart. That feeling of "exhaustion" that went away for me. Sure I'm still tired but there's other things I think affecting that. That !@#!, I just don't feel good business, that went away. The trick is finding the sweet spot I think and probably only another sleep study will answer that question. I'm not going until I feel I'm at a stable point where there's not enough pain to justify any gain I guess, then we'll see. Sorry though, it does nothing for curing the intolerance to exercise..  


_________________
Read my ongoing story at Sleep Apnea Sucks

I'm at 50% now. My jaw has felt fine over the last 9 days of 1/2 turns. I do tend to grind my teeth a lot (done this for years), but still, my jaw feels fine.

I tend to vary quite a bit each day how I feel. I'll have one good day and then a few bad days. I'm hoping the bad days will go away soon.

And FYI, my main battle is to overcome "mitochondrial failure" (which is more commonly known as Chronic Fatigue and Immune Dysfunction Syndrome or CFIDS). If anyone is interested, here is a great article that explains the problem:

http://www.drmyhill.co.uk/article.cfm?id=381

Blood, metabolite (test for Kreb's cycle function), and other testing has confirmed my body is simply not producing ATP (energy) properly, which leads to the exhaustion, low heart function, intolerance to exercise, immune dysfunction, hormonal imbalance, ect.

However, recovery is nearly impossible it seems if you do not get normal and healthy sleep. Therefore, the TAP appliance is a means to correct my sleep so that I can begin to recover through all the rest of the treatments I do (supplements, detox methods, eventual exercise).

Here is another article on CFIDS:

http://www.hormoneandlongevitycenter.com/cfidsfibromyalgia/#6

Anyway, hopefully most people here don't have CFIDS and merely have sleep apnea alone, but I hope the two articles above prove interesting regardless.

I'll update again as I reach 60-70% of the max adjustment for the TAP. Thank you.

I've got my TAP fully adjusted now. I kept doing 1/2 turns each night until I reached the max position. I never had jaw pain. Sadly, I still don't feel much benefit. I'd say I do feel a LITTLE better with the TAP, but we're talking maybe 10% better.

My question is, is it possible to overadjust the device and make it less effective? Or maybe I need more adjustment still. ??? Thanks for any input. I'm going to have a sleep study done in a bit here to get more definitive information on how to TAP is helping.

hmmm. interesting question, I have considered the same but never asked anyone. I would think it would have alot to do with whatever is the cause of you're apnea so it's probably possible. Having a sleep study though will at least give you an idea where you're at. I'd strongly recommend getting a difinitive answer to the "why" too.


_________________
Read my ongoing story at Sleep Apnea Sucks

Another update: After reaching max position with my TAP3, I'm now adjusting it back a bit because I felt better and had more dreams when it was adjusted maybe 50-70% of the way. This isn't scientific fact yet, but I'm going to test it for a while at various lesser settings to see how I feel. So at this point I believe that at least for me full adjustment is not ideal.

I'm also doing an at home sleep monitor test using a device called RUSleeping by Respironics.

http://rusleeping.respironics.com/

With the TAP3 fully adjusted, the device said I had 101 total events, and about 11.5 events per hour.

With the TAP3 four turns short of fully adjusted, the device said I had 119 total events, and about 12.7 events per hour.

So both nights were bad, right? I'm not sure how accurate this device is compared to a full lab sleep study. Anyway...

I'm actually now realizing the possibility that my sleep problem is not typical sleep apnea but possibly another sleep problem like perhaps alpha intrusion. This is all speculation at the moment. I'm going to do a sleep study with a doctor in my area who is aware of problems such as alpha intrusion.

I'll update everyone as I know more. Thank you.

My understanding is that the device doesn't always solve sleep apnea completely.  A lot of folks use it in combo with the CPAP (but at a much, much lower pressure).  I go to an outfit in Portland, Oregon that makes an oral appliance (similar to the TAP) that also integrates CPAP (the mouthpiece + nasal pillows).  I'll let you know what happens.  The name of the place is the Sleep Medicine Network.

If the reason you couldn't tolerate CPAP was because when you used it by itself you had to have a very high pressure, you should be able to back it off a lot.  It is a journey to find the right solution for you, but a journey that is worthwhile.  Never give up hope and never quit trying.

UPDATE: I've finally done a full sleep study. I don't really know how to interpret it all at the moment. It claimed my API was 5.8, which would make me just barely have mild sleep apnea (mild being between 5-15). I did the sleep study without the TAP or CPAP.

It's interesting to note that the RUSleeping device seemed to put me around 10-12 API. Anyway, the main purpose of the sleep study was to see my brainwaves to determine if alpha intrusion or another abnormalty was happening. But suprisingly, the two-page study results I was given had no mention whatsoever of brainwaves. I'm now posting the results I did get here, and I'd love to hear from others what they think of it because I really have no frame of reference for a number of these items:

1. Sleep Stage Summary: Patient spent 7.9 hours in bed with a total sleep time of 7.7 hours. Non-REM was 5.9 hours, and REM was 1.8 hours. Sleep onset latency was 4 minutes, persistent sleep latency was 4 minutes, and latency to REM was 55 minutes. There were 10 minutes awake after sleep onset.

2. Sleep Effeciency: Overall efficiency was 97.1%. Patient spent 10 minutes (2.2%) awake, 58 minutes (12.5%) in Stage 1, 253.2 minutes (54.8%) in Stage 2, 43.5 minutes (9.4%) in Stage 3, 0 minutes (0.0%) in Stage 4, and 107.5 minutes (23.3%) in REM sleep. There were 134 spontaneous arousals, 30 respiratory arousals, and 14 plm arousals for a total of 178 arousals. There were 11 awakenings.

3. Apneas, Hypopneas, and RERA's: There were 48 respiratory events recorded. There were 8 apneas noted, 2 of which were associated with an arousal. The apnea index was 1.0. The hypopnea index was 4.8. The apnea hypopnea index (AHI) was 5.8. There were 25 hypopneas with arousals with an index of 3.2. There were 3 RERA's for an index of 0.4. The Respiratory Disturbance Index (RDI) was 6.2.

4. Snoring: None.

5. Body position: 92% on back, 8% on the right side.

6. ECG Summary: Minimum heart rate was 44.0 bpm. Average heart rate was 56.8 bpm. Maximum heart rate was 90 bmp. Patient was in sinus rhythm. No PVC's or PAC's were noted.

7. EMG Summary: There were 43 PLM jerks, 14 of which were associated with arousal. The PLM index was 5.6. The PLM arousal index was 1.8. The PLM wake index was 0.0.

8. Oxygen Saturations: Oxygen saturations (Sp02) while awake on room air was 95.2%. The nadir Sp02 was 91.0%. The saturation was greater than 90% for 99.9% of the study.

9. CPAP Titration: Not performed.

10. MSLT: Not performed.

Anyway, my sleep doctor who specializes in neurology and the sleep lab didn't provide any interpretation at all. I had to ask them THREE TIMES to provide some information on my brainwaves. They finally said I had "some" alpha intrusions. Well, what does SOME mean? I was really disappointed they couldn't tell me more...I've read about doing a full EEG brain scan thing and maybe I need to do that...

My current thoughts: respiratory wise, the results look pretty decent I think. Non-respiratory wise, I had 134 spontaneous arousals, which may indicate a problem. Also, the 43 leg jerk movements may be an issue. So I don't think sleep apnea is my major problem. They claim I'm 97% "efficient" in my sleep, but WHAT THE HECK does that even mean? I still wake up exhausted and am very tired throughout the day, so are they just trying to mock me or what?

I realize, as you can read in my first post, I have a number of medical problems like autoimmune disease, hormone imbalance, kreb's cycle problems (failure to create ATP). So basically after two years of medical stuff, all my doctors can't seem to figure it out, and neither can I.

But anyway, my sleep doctor gave me a 10mg trial dose of Amitryptaline just to see if it helps. So far I haven't noticed any quantifiable improvement.

Thanks for everyone's help, and please let me know your thoughts.

Wow you must fall asleep easy... to sleep 7.7 out of 7.9 hours :)   My sleep study was terrible, i wasnt able to sleep, there was a busy road you could hear cars, the sensors kept falling off and the tech would have to come in to put it back on.  terrible night.

Good luck!  I wish you the best

Brumbek wrote:

UPDATE: I've finally done a full sleep study. I don't really know how to interpret it all at the moment. It claimed my API was 5.8, which would make me just barely have mild sleep apnea (mild being between 5-15). I did the sleep study without the TAP or CPAP.

It's interesting to note that the RUSleeping device seemed to put me around 10-12 API. Anyway, the main purpose of the sleep study was to see my brainwaves to determine if alpha intrusion or another abnormalty was happening. But suprisingly, the two-page study results I was given had no mention whatsoever of brainwaves. I'm now posting the results I did get here, and I'd love to hear from others what they think of it because I really have no frame of reference for a number of these items:

1. Sleep Stage Summary: Patient spent 7.9 hours in bed with a total sleep time of 7.7 hours. Non-REM was 5.9 hours, and REM was 1.8 hours. Sleep onset latency was 4 minutes, persistent sleep latency was 4 minutes, and latency to REM was 55 minutes. There were 10 minutes awake after sleep onset.

2. Sleep Effeciency: Overall efficiency was 97.1%. Patient spent 10 minutes (2.2%) awake, 58 minutes (12.5%) in Stage 1, 253.2 minutes (54.8%) in Stage 2, 43.5 minutes (9.4%) in Stage 3, 0 minutes (0.0%) in Stage 4, and 107.5 minutes (23.3%) in REM sleep. There were 134 spontaneous arousals, 30 respiratory arousals, and 14 plm arousals for a total of 178 arousals. There were 11 awakenings.

3. Apneas, Hypopneas, and RERA's: There were 48 respiratory events recorded. There were 8 apneas noted, 2 of which were associated with an arousal. The apnea index was 1.0. The hypopnea index was 4.8. The apnea hypopnea index (AHI) was 5.8. There were 25 hypopneas with arousals with an index of 3.2. There were 3 RERA's for an index of 0.4. The Respiratory Disturbance Index (RDI) was 6.2.

4. Snoring: None.

5. Body position: 92% on back, 8% on the right side.

6. ECG Summary: Minimum heart rate was 44.0 bpm. Average heart rate was 56.8 bpm. Maximum heart rate was 90 bmp. Patient was in sinus rhythm. No PVC's or PAC's were noted.

7. EMG Summary: There were 43 PLM jerks, 14 of which were associated with arousal. The PLM index was 5.6. The PLM arousal index was 1.8. The PLM wake index was 0.0.

8. Oxygen Saturations: Oxygen saturations (Sp02) while awake on room air was 95.2%. The nadir Sp02 was 91.0%. The saturation was greater than 90% for 99.9% of the study.

9. CPAP Titration: Not performed.

10. MSLT: Not performed.

Anyway, my sleep doctor who specializes in neurology and the sleep lab didn't provide any interpretation at all. I had to ask them THREE TIMES to provide some information on my brainwaves. They finally said I had "some" alpha intrusions. Well, what does SOME mean? I was really disappointed they couldn't tell me more...I've read about doing a full EEG brain scan thing and maybe I need to do that...

My current thoughts: respiratory wise, the results look pretty decent I think. Non-respiratory wise, I had 134 spontaneous arousals, which may indicate a problem. Also, the 43 leg jerk movements may be an issue. So I don't think sleep apnea is my major problem. They claim I'm 97% "efficient" in my sleep, but WHAT THE HECK does that even mean? I still wake up exhausted and am very tired throughout the day, so are they just trying to mock me or what?

I realize, as you can read in my first post, I have a number of medical problems like autoimmune disease, hormone imbalance, kreb's cycle problems (failure to create ATP). So basically after two years of medical stuff, all my doctors can't seem to figure it out, and neither can I.

But anyway, my sleep doctor gave me a 10mg trial dose of Amitryptaline just to see if it helps. So far I haven't noticed any quantifiable improvement.

Thanks for everyone's help, and please let me know your thoughts.