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Dr. Soileau question

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baseten +0 points · almost 7 years ago Original Poster

I wasn't sure if there is a way to send a private message on this site, but my question is for Dr. Soileau.

I have been using the Eason nasal mask with great success for 3 weeks, but just recently started to have trouble with my tongue coming away the roof of my mouth and the back of my throat making a strange noise like it is losing suction. I also had this trouble develop suddenly after 2 years of great success with the P10 Nasal Pillow Mask.

I am not doing anything different than what I have the last few weeks that have been so successful. To make the nasal mask work, I tape my mouth shut, use a chin strap and put some hard foam behind the lower mask straps so that my cheeks don't puff out. It sounds like a lot, but it has worked wonderfully and has been comfortable.

I picked up a new chin strap just to make sure that wasn't the problem, but it didn't help. I'd really like to stick with this mask because my AHI is so good now (under 1 most nights). I have no leaks; it's comfortable; and my mouth doesn't dry out like it does with a full size mask. I'm a small person so it's hard to get a full face mask to fit me without leaking. But I can only sleep for a few hours before all that noise and the clicking feeling in my throat wake me up and then keeps me awake for the rest of the night.

But I just wondered if you have ever seen anyone who was able to use a mask for a couple of weeks but then started to have this kind of problem. I cannot figure out why it changed.

My pressure is 15-19 with a PR of 3.

I also tried a boil and bite mouth guard with the nasal mask and chin strap without success. I no longer have that but am thinking to buy another to try with the full size mask and chin strap in case that would solve the problem.

Thanks so much.

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DrTonySoileau +0 points · almost 7 years ago

Yes I have seen this with patients that have a high pressure like your using at 15-19. I don't prescribe CPAPs so when I see this it is usually my ENT/sleep specialist that has a patient struggling with CPAP and wants to see if I can help. If the boil and bite didnt work consider a custom fabricated appliance like the Moses, TAP, or Narval that hold your upper and lower jaw together during sleep. This may solve all your problems and can be worn with a CPAP. Dr Tony

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baseten +0 points · almost 7 years ago Original Poster

Hi Dr. Tony,

Thank you so much for your advice. I will give those things a try.

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DrTonySoileau +0 points · almost 7 years ago

Awesome. Let me know if you need anything else. And if the new appliance is working.

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baseten +0 points · almost 7 years ago Original Poster

Hi Dr. Tony,

Of the three dental appliances you suggested, is there one that would be better for a small mouth? Also, how Dio I find a good dentist who can help me with an oral appliance? I think there is only one dentist in our small community who does it, and I am not sure how good she is.

I thought I would try the cheap boil and bite mouth guard again. When I tried it before, I did not set my lower jaw forward. Is this why it didn't work If so, how much forward does my lower jaw need to be before I bite down?

And I figured out what was causing the "pig noises." It's my tongue coming away from the roof of my mouth, and air filling my mouth despite the tape and chin strap.

Thanks for your help.

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baseten +0 points · almost 7 years ago Original Poster

I forgot to mention that I do have TMJ issues in case that makes a difference in your recommendation.

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DrTonySoileau +0 points · almost 7 years ago

The Narval is the thinnest on the market so its great for a small mouth. The downside is it takes 4-6 weeks to get it back from the lab, the cost can be a little higher, and if you get any dental work down you pretty much have to buy a new one. But for a small mouth and especially if you have TMJ issues its a great appliance once you start wearing it. What city are you in? Maybe I will know someone close to you.

Dr Tony

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baseten +0 points · almost 7 years ago Original Poster

We live in Las Cruces, NM which is an hour from El Paso, TX and 3 hours from Albuquerque. Thanks again.

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DrTonySoileau +0 points · almost 7 years ago

Still waiting for some of my buddies that are incredible sleep dentists to get back to me to see who is closest to you.

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baseten +0 points · almost 7 years ago Original Poster

Hi Dr. Tony,

I know you are waiting for your buddies to return from their conference but wanted to ask you a couple of questions. If you have any thoughts, I can wait until you hear from your friends so you are not having to write 2 replies.

I tried the "Good Morning Snore Solution," a tongue retaining device, last night. I was able to keep the tip of my tongue in the suction bulb but still had the problem with the noises and physical sensations similar to the sound one makes and the feelings in one's throat when imitating a pig. My lips will also start to sputter just a little so I'm assuming air might be coming into my mouth instead of it all going down my airway. It seems like the tongue is somehow losing suction, from the roof of my mouth, but I'm not sure that's the problem since the snore solution device didn't seem to solve the problem. As you may recall, I do use medical tape over my mouth and a chin strap.

I've thought about going to a different Sleep Medicine specialist and or an ENT specialist to see if there is something that is causing a structural problem. I am almost 57 and menopausal. I also have Myasthenia which causes the facial and throat muscles to be weak which is typically worse in the evenings. In fact, it is quite common for people with Myasthenia to have apnea.

I'm concerned about a mandibular device because both the snore solution and the boil and bite mouth guard (the one I bit with my normal bite and the one that I tried moving my lower jaw forward just a little) make the muscles in my face so tired that it's uncomfortable to have the devices in my mouth for more than a few minutes. My face ends up feeling the way most people would feel after blowing up balloons for an hour. I think this is because of the Myasthenia.

So my questions are these:

  1. Do you have any ideas what might be causing the problem?
  2. Do you think it would be a good idea to have a second opinion from a Sleep Medicine specialist? My doctor is wonderful but seems to be at a loss for what is happening.
  3. Would a mandibular device cause the same facial fatigue that the boil and bite mouth guard and the Good Morning Snore Solution cause?

Thank you for your help.

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DrTonySoileau +0 points · almost 7 years ago
  1. Do you have any ideas what might be causing the problem? As a general answer I would say poor nerve health. Muscles are controled by nerves. If the nerves are not active (means turned off, not dead) then the muscle looses tone and activity. I have a few patients with Myasthenia Gravis that are getting amazing result from seeing a chiropractor to specializes in nerve health. Consider going to this website and finding a chiropractor trained in http://quantumneurology.com/. Might make a world of difference for you. I have found that the medical community in my area does not have very good answers for Myasthenia. But Dr Cormier who is trained in quantum neurology gets really good results by "turning the nerves back on".

  2. Do you think it would be a good idea to have a second opinion from a Sleep Medicine specialist? My doctor is wonderful but seems to be at a loss for what is happening. Yes. I always agree with second opinions when a patient hits a road block.

  3. Would a mandibular device cause the same facial fatigue that the boil and bite mouth guard and the Good Morning Snore Solution cause? Maybe. But the question is what the true cause. Is the fatigue truly being caused by the appliance or do you have a problem with the trigeninal nerve (facial nerve) and the movement of your jaw forward is shutting down the nerve because its not healthy? I would still suggest getting a dental appliance if you dont want to wear a CPAP. Getting air into your lungs is always a first thought.

Hope I helped a little. Good questions. Just hard to give great answers to them. Let me know your thoughts.

Dr Tony

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SleepDent +0 points · almost 7 years ago Sleep Commentator

Hi! This is Doctor Luisi speaking. I hope you don't mind if I jump in a little bit. Common sense would tell me that someone with Myasthenia Gravis could, indeed have some trouble with oral appliances. I would think that, since CPAP is the more passive type of treatment, it might be a better choice for someone in your position, but that is just speculation on my part. Dr. Luisi

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baseten +0 points · almost 7 years ago Original Poster

Hi Dr. Luisi,

Thank you so much for your response. I think you are right. I tried the Good Morning Snore Solution once again this afternoon for a few minutes with a chin strap which helped a little, but still had the facial fatigue.

The last few nights I have noticed that with the CPAP treatment, one piece of medical tape over my mouth, and a minimal chin strap, I seem to be learning how to keep the noises from happening as much and am starting to sleep better. And there is no facial fatigue with this method. I'm wondering if I'm starting to get better at keeping the "back door" into my mouth shut, but don't know enough to know if that was the problem in the first place.

I am not a newbie to CPAP therapy. I have been doing this for 4 years. I was successful the first 3 years with the Resmed P10 mask, a chin strap and tape and a pressure on my autopap of 10-13. I had no trouble with the noises and physical sensations in my throat. Then last fall, all that changed for some reason. I tried several FFMs, but my face is small and it has been difficult to find one that will stay sealed and with the pressures that high, my mouth is becomes unbearably dry because I am a mouth breather. The nasal mask seems to be the best option for me, and when I do sleep my AHI is great --- almost always under 2. So I am very grateful that my body/brain seems to be relearning what it needs to do.

Do you think it would be good to have an ENT or my sleep medicine physician look down my throat to see if something has changed over the last few months, causing the problem and the need to increase the maximum pressure to 20? A few years ago the doctor told me that my airway was narrow. I wonder if the tissue has gotten flabbier. I've not gained any weight. I'm small and weigh 115 pounds, but I do have the myasthenia issue.

Thanks again. I really appreciate your feedback.

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SleepDent +0 points · almost 7 years ago Sleep Commentator

Yes, I think that it would be reasonable to have the status of your airway re-checked. By definition, the Myasthenia issue gives you unusually poor tissue tone. In that respect, you are in a non-standard situation and you can't take for granted that your reactions to treatment are going to be typical. Your best bet is to expect the unexpected and be happy when it doesn't happen. Dr. Luisi

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baseten +0 points · almost 7 years ago Original Poster

Hi Dr. Luisi,

That makes so much sense and clears up the confusion I have felt as to why I can do well for a few weeks and then all of a sudden start having trouble again. Changing my expectations will bring me more peace.

Thank you again.

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SleepDent +0 points · almost 7 years ago Sleep Commentator

You are so welcome!

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