Forum · Introduce Yourself!

Write a Reply
2 posts
Was this reply useful? Learn more...
   
[-] ImaginativeScarletDolphin9830 +0 points · over 1 year ago

Hello,

My name is Ann and I am old and grey and a year ago I was diagnosed with moderate sleep apnea and cannot tolerate a CPAP machine so am currently using a dental appliance which works to some degree.

By chance, I just found out about Myofunctional Therapy which according to the US Natl. Library of Medicine - Myofunctional Therapy decreases arena-hypopnea index by 50% in adults and can be an adjunct to other therapy.

Anyone ever heard of this or found a therapist? Any good results out there? Thanks

10 posts
Was this reply useful? Learn more...
   
[-] ResourcefulViridianPanther8723 +0 points · over 1 year ago

I have not heard of Myofunctional Therapy, but I have had Inspire Sleep Therapy for 4 1/2 years and I cannot say enough about how wonderful this is for me. Check it out at inspiresleep.com.

498 posts
Was this reply useful? Learn more...
   
[-] DanM +0 points · over 1 year ago Sleep Commentator

Hi @FrankChartreuseMosquito9836. I am happy to hear your oral appliance is working to treat your sleep apnea. Medicare does cover oral appliances for sleep apnea and released some updated coverage information in October 2015. The criteria are very specific, so the guidelines must be followed closely for Medicare to pay for the treatment. The American Academy of Dental Sleep Medicine has a physician finder on their Patient Resources web page (http://www.aadsm.org/PatientResources.aspx), and you may be able to locate a certified dentist in your area. A dentist who is board-certified in dental sleep medicine may be able to assist you with getting your device paid for. Best wishes, and please keep us posted!

498 posts
Was this reply useful? Learn more...
   
[-] DanM +1 point · over 1 year ago Sleep Commentator

Hello Ann (@ImaginativeScarletDolphin9830). I have heard of Myofunctional Therapy, and I read a literature review that showed the same statistics you mention. Here is a link to the article http://www.ncbi.nlm.nih.gov/pubmed/25348130. I do not have any personal experience with the therapy, but maybe we have some community members who can comment.

1 post
Was this reply useful? Learn more...
   
[-] BrightYankeesBlueLocust6465 +0 points · over 1 year ago

Hi my name is Dayle, I have been on a Cpap for nearly 2 yrs now for Sleep Apnea. I have just had Sinus Surgery 3 weeks ago and I am really struggling with being able to tolerate the Cpap while healing form the surgery. I thought at first it was drying out my sinus which is not good for healing but I am now thinking my pressure may be too hard for me in this situation. My machine runs at 18. Has anyone had sinus surgery while using a Cpap?

99 posts
Was this reply useful? Learn more...
   
[-] BrainsNeedSleep +0 points · over 1 year ago

HI -- I have been using PAP since 2008 and just this past 2015 had 2 nasal surgeries and one balloon sinuplasty -- and I was carefully instructed NOT to use the CPAP for several weeks afterwards. This was pretty awful as I literally fall apart after about 10 days without it...4 weeks was awful. I think my ENT was being either very very cautious, or didn't really "get it" how badly I needed to stay on it.

99 posts
Was this reply useful? Learn more...
   
[-] BrainsNeedSleep +0 points · over 1 year ago

Ooops. / My pressure is half as high as yours so I can't speak to that issue, Dan probably better for that -- but also, do you have a humidifier on the PAP? That makes an enormous difference -- too much and interferes with sleep breathing, too little and dries out and hurts your sinuses... Good luck.

498 posts
Was this reply useful? Learn more...
   
[-] DanM +1 point · over 1 year ago Sleep Commentator

Hi Dayle (@BrightYankeesBlueLocust6465). I have not had sinus surgery as a CPAP patient, but I have worked with both physicians and patients related to this issue. While it will depend on your specific situation, CPAP users sometimes need to temporarily not use treatment while healing from some types of surgery. If they do not want you to stop using treatment temporarily, they may be able to lower the pressure so that you still get some benefit from your treatment. I encourage you to contact your surgeon and/or sleep physician and see if they can provide you with guidance. The pressure at 18 cm may be difficult to tolerate after surgery, depending on the type of surgery and your level of recovery. Best wishes, and please keep us posted.

1 post
Was this reply useful? Learn more...
   
[-] PioneeringRedVioletJellyfish6611 +0 points · over 1 year ago

Hi

498 posts
Was this reply useful? Learn more...
   
[-] DanM +1 point · over 1 year ago Sleep Commentator

Hello @PioneeringRedVioletJellyfish6611. If you intended to post information, we only received your "Hi" message. Welcome to MyApnea.Org, and please feel free to post on the Forum!

[+] [deleted] +0 points · over 1 year ago
[+] [deleted] +0 points · over 1 year ago
[+] [deleted] +0 points · over 1 year ago
2 posts
Was this reply useful? Learn more...
   
[-] DynamicNavyBlueSpider3631 +0 points · over 1 year ago

Hi, I Left a comment with my introduction but I Don't see it here. My name is Bridget. I'm a senior of 74 years who was recently diagnosed in October, 2015. I Left a long intro earlier that I Don't see it on here and I Don't want to type more unless I See that it is reaching someone. Would appreciate an acknowledgement. Thank you..

2 posts
Was this reply useful? Learn more...
   
[-] DynamicNavyBlueSpider3631 +0 points · over 1 year ago

How did I Get the handle DynamicNavyBlueSpider3631??

33 posts
Was this reply useful? Learn more...
   
[-] Sherry +0 points · over 1 year ago

Wow Bridget! I am seeing your post now but as I have scrolled back, I don't see an earlier post. Please do repost. I am not sure about the name either. We usually choose that when we register on this site?

498 posts
Was this reply useful? Learn more...
   
[-] DanM +1 point · over 1 year ago Sleep Commentator

Hi Bridget (@DynamicNavyBlueSpider3631). Thanks for posting on MyApnea.Org. Your Forum Name or handle is automatically generated, but you can change it by going to the "Settings" page. The settings page can be found by clicking on the small white arrow on the upper-right side of the page. Just change your name in the Forum Name field to a name you prefer. Also, please do post any questions or comments you have. We have a great member community and look forward to hearing from you!

1 post
Was this reply useful? Learn more...
   
[-] DoctorDozeZzZzz +0 points · over 1 year ago

Hi everyone. Wow, first of all... Extremely impressed with this forum and community.

I'm an anesthesiology resident. I'm training right now to be the doctor that puts you to sleep before surgery. I found out I had moderate sleep apnea AHI=18 and started using a CPAP seriously about 2 months ago after the titration study my optimal pressure was 6cmH20. I wear the CPAP nasal over the nose mask everynight, I am unable to wear it for a total of more than 3 hours/night. I continue to wake up even with the mask on at times, but most of the time I wake up with the mask off somewhere in the bed. I recently ordered an oral appliance but have not received it yet, ResMed Narval CC- luckily my insurance covered it ($2300). I have been seeing an ENT in league city who wants to do a terbinate reduction and septoplasty (I have inferior terbinate hypertrophy and moderate-severe right septal deviation). I'm okay with doing that surgery but I want to make sure its going to actually help the problem. I wanted to make an appointment and schedule a drug induced endoscopy to get to the bottom line and see which surgery has the highest likelihood of benefiting me (this endoscopy is when they put you under deep sedation and they put an endoscope in your nose and look for where the blockage is occurring at.) My ENT did a fiberoptic exam in the office and examined my tonsils, etc. Apparently he didnt think I have any source of obstruction in that area. As a training anesthesiologist, I know that the upper airway completely changes once youre paralyzed (in REM sleep). I have a feeling that the source of the obstructive is actually in this area for that reason.

Anyone have any experiences with upper airway surgery in this situation?

498 posts
Was this reply useful? Learn more...
   
[-] DanM +1 point · over 1 year ago Sleep Commentator

Hi @DoctorDozeZzZzz, and welcome to MyApnea.Org! Glad to see you are impressed with our Forum. How long have you being using your CPAP, and do you happen to know if your sleep apnea is REM-related? Many patients have a similar story to yours, including me. I used to wake up frequently to find my mask somewhere in the bed or on the floor. I started practicing wearing it before going to bed while reading or watching TV, and that helped quite a bit. I'm now able to wear the mask the entire night. As for the surgery, I do not have any personal experience with upper airway surgery. I'm hoping some of our members might reply if any of them have experience. In the meantime, best wishes with your CPAP and with getting answers to your questions. Feel free to post other questions and your own experiences. -Dan

1 post
Was this reply useful? Learn more...
   
[-] JCharlton +0 points · over 1 year ago

Hi - I just joined this site and am conducting research into hypoglossal nerve stimulation for the treatment of severe OSA. This research will be used by a non-profit to evaluate whether to invest resources in this potentially exciting treatment for those who do not benefit from CPAP. I'd like to know your thoughts on hypoglossal nerve stimulation. What you like/dislike about it, what you've heard about it, concerns, etc.. If anyone out there has a device, would welcome your input as well! Thank you! Best, JC

3 posts
Was this reply useful? Learn more...
   
[-] AffableIndigoFox8154 +0 points · over 1 year ago

I posted before, but I can't find it. I recently quit my job because they went to a seven day work schedule, at least nine hours a day. I am already exhausted when I wake up. I'm going to burn through my savings and hope some miracle happens. CPAP is not that miracle. It works, just not good enough. I've lost hope.

99 posts
Was this reply useful? Learn more...
   
[-] BrainsNeedSleep +0 points · over 1 year ago

Have you downloaded SleepyHead software (sourceforge.net) and looked at your own data? If so, what sort of events is your particular machine flagging? I understand each manufacturer 'scores' events differently, but SleepyHead will show you how regular/irregular your breathing is, when you have the most problems, and from there you can begin to figure out perhaps some things to do -- or at least have the print outs to go to your "sleep specialist" and push for better treatment . Of course, this is all presuming that the exhaustion is a result of the poor sleep, though Dan does make a good point that it --exhaustion -- can be caused by other things. Miracles, I think, happen to those who persist. I encourage you to do the same!

2 posts
Was this reply useful? Learn more...
   
[-] AffectionateRedDunlin4095 +0 points · over 1 year ago

Can a person use the SleepyHead software with the card from the AirSense 10 AutoSet for Her Res-Med machine? The card is tiny, so it wouldn't fit in the DVD slot. Is there any way to access the information, or do I just have to wait the two months until I get a follow up appointment to see if I have any apneas or hypopneas?

498 posts
Was this reply useful? Learn more...
   
[-] DanM +1 point · over 1 year ago Sleep Commentator

Hi @AffableIndigoFox8154. I'm sorry to hear you are experiencing such exhaustion. CPAP can be helpful in improving fatigue in some patients, and I have experienced improvement in my own levels of fatigue since starting treatment a number of years ago. However, not everyone has the same experience. Fatigue can be caused by other health conditions, medications and many other things. Have you explored other potential causes for your exhaustion?

1 post
Was this reply useful? Learn more...
   
[-] AdventurousPearTiger3577 +0 points · over 1 year ago

How do u comment on the forum? Dosent seem to work on iPhone

1 post
Was this reply useful? Learn more...
   
[-] SleepStudent +0 points · over 1 year ago

Hi everyone my name is Mazen I am a PhD student at Seton Hall University, I am also an RRT-SDS. I am Interested in obstructive sleep apnea, and sleep in general.

498 posts
Was this reply useful? Learn more...
   
[-] DanM +1 point · over 1 year ago Sleep Commentator

Hi Mazen (@SleepStudent)! Welcome to MyApnea.Org. We have an active Forum and a very engaged Patient Engagement Panel. Feel free to post questions and share experiences here on the Forum. There are also surveys, educational information, and some research articles posted. We hope you will access these features and enjoy the website!

1 post
Was this reply useful? Learn more...
   
[-] IntelligentDesertSandDolphin6662 +0 points · over 1 year ago

Hi I'm joe I was diagnosed with severe apnea 15 yrs ago. I've been on a B-Pap and use it every night for 15 yrs. My condition is getting worse and I have been approved and scheduled to get the new "inspire" implant on 3/11/16. I read everything there is too read, discussed all issue's with the surgeon. I am now getting cold feet and becoming a little scared to get it. Only because it is so new. I would really like to talk with someone who has it to help in my decision. To let you know my 1st study I stopped breathing 51 times per hr. That was 15 yrs ago. I have been fine until a few months ago my pressure was raised to 16/13 and I'm having 23 episodes per hr. This is why they have recommended inspire. Just a little scared and nervous. Please let me know asap if someone is out there I can speak with. Thanks Joe

4 posts
Was this reply useful? Learn more...
   
[-] Danmc +0 points · over 1 year ago

Hi Joe. I was implanted in 2012 and it has changed my life. I was part pf the Star Trial for FDA approval. Inspire launched a new page on their web site https://www.inspiresleep.com/connect-with-an-inspire-therapy-ambassador/ I am one of the ambassadors and there are many others on out team that would be more than willing to share our experience with you.

4 posts
Was this reply useful? Learn more...
   
[-] Danmc +0 points · over 1 year ago

Also check out https://www.inspiresleep.com/inspired-lives/ You can watch our stories :-)

498 posts
Was this reply useful? Learn more...
   
[-] DanM +1 point · over 1 year ago Sleep Commentator

Hi Joe (@IntelligentDesertSandDolphin6662). Several Inspire patients have posted their success stories on the Forum. You can use the search feature to see the topics where posts about Inspire appear. There is also a good article posted on our Research page if you have not read it: https://myapnea.org/blog/new-frontiers-in-the-treatment-of-sleep-apnea-unilateral-hypoglossal-nerve-stimulation. Hopefully, some of our members can provide some feedback on their experiences. Best wishes!

Please be advised that these posts may contain sensitive material or unsolicited medical advice. MyApnea.Org does not endorse the content of these posts. The information provided on this site is not intended nor recommended as a substitute for advice from a health care professional who has evaluated you.