Mysterious Sleep Apnea or UARS. Unsolved. Please HELP
Posted: Sat Feb 13, 2021 5:09 pm
28 yr| male| BMI 23.5| I have Resmed air sense 10 but I do not use it (explained later) | Oregon, USA
Hello everyone,
I apologize for this long post. I have been suffering from the sleep-related issue (most probably UARS) since 3rd, Aug 2016 (Strangely, it started suddenly from one day). I was trying to sleep in a flight and every time I was dozing into sleep, I would be awakened up by twitching of feet or hand. I ignored it that time, but since then this became permanent every time I go to sleep. Within a week my symptoms arrived:
• Feeling sleepy/ drowsy all over the day. Fatigue (even after sleeping for 11 hours)
• Unrefreshing sleep.
• Low concentration/ alertness
• Low memory (short & Long term both)
• Hard to learn new things. Thinking problem. (In one term, it feels like a brain fog/ dull brain)
• Blunt headache every day. Especially after waking up.
• Wake up from sleep with breathlessness, choking, sometimes with an elevated heartbeat. Sometimes I wake up with a feeling of breathing struggle and as soon as I move my tongue, I start to breathe properly again. Other times I will wake up by twitching of hand or leg. Or sometimes I will wake up for no reason. Sleep seems very light. Any outside disturbance (e.g. sound) will wake me easily. The frequency of waking up has been reduced from once in every 5 min to 8-9 times per night now (Due to improvements from surgeries done)
The doctors were confused at the beginning as I am young, not overweight, and do not snore. Anyway, got my 1st Lab sleep study on June 17, AHI: 8. Doctors gave me CPAP (Fixed, 11 H2Ocm). I tried for 3 months but no improvement in the symptoms. I contacted the doctor back, but they claimed according to their data (from the CPAP card) it is working. However, I was not seeing any change.
Anyway, I started to seek a solution from other doctors and at some point, I had a septoplasty (Feb 18). It reduced 20% of my issues. So, I became sure that my problem is related to sleep time breathing.
On Aug 18 I brought a pulse oximetry device for overnight recording. Started to keep the record for every night. It was very bad. Drop over 4% will be 16-20 times per hour. Nadir Oxygen would be 78.
I had the 2nd sleep study (home) on Sep 18, AHI 8.5. A doctor did a Sleep endoscopy then and for the 1st time, we found severe obstruction even though mild sleep apnea (Obstruction at soft palate + Tongue base). Had a “UPPP + tonsillectomy + Lingual tonsil removal” then. Which removed another 20% of the issue. My oximetry also got improved. Now it would be 10-12 times per hour (drop over 4%) and nadir oxygen would be 85.
I tried an auto CPAP this time did not make any difference. Did the next lab study in Feb 2019. AHI 7. They again gave me the ResMed cpap|H2O 13cm| Again did try but no benefit. The sleep center continued to claim it is working and I should not need to go for any of the surgeries I had. But I know how much difference was created by those surgeries.
By this time, I and my doctors tried to check if anything else has been hiding behind this. So, I have been through numerous other tests including EEG, ECG, MRI, blood, urine tests, MSLT(test for narcolepsy), and whatnot. I have been seen by neurologists, family med, rheumatologists, psychologists, pulmonologists, and many other specialties. Not a single thing came out problematic.
In 2019, I met a big doctor in the field of sleep surgery. He did a DISE again and there was still obstruction at the tongue base level. The obstruction at the tongue base level was observed to be solved by the last UPPP. So, he then did a Genioglossus advancement. Surgery was done correctly but unfortunately, there was not a slightest development after two months.
Later on, based on suspicion that I might have issues with my sinus the same doctor ordered a CT scan of the nose. This showed severe blockage in the sinus. So, I had to go through endoscopic sinus surgery. Within a week my sleep got better. Within two weeks my other symptoms also got better. I will say it has removed an additional 35% of the problem severity. So, I am now left with 25% from the initial situation. My oxygen curve also made a sharp improvement. Nadir point came to 90. And a 4% drop is 6-8 times per hour. Sometimes for 30-50 min, even it comes as an almost straight line (though it does not happen every night).
I again tried CPAP (with 4 different masks). Dental sleep apnea device (custom made). Sleeping position, sleeping in an elevated position, tongue exercise, and a big list of other things. Nothing works at all.
I had another follow-up sleep study. AHI 5.4. and another with Dental Device, AHI 7.1, RI: 9.1. Both are home study.
June 20: Had another DISE (3rd). It shows a similar blockage as 2nd one. No obstruction in soft palate/ epiglottis but blockage at tongue base. Had gone through Tongue radio frequency (2 times- in one month apart) + Hyoid suspension (done with the 2nd radiofrequency). The result is negative. Not a slightest improvement. I and the doctor both are frustrated. He thinks it is not from sleep apnea. He thinks it is something else, but he has no idea what it could be. He does not want to do anymore sleep apnea treatment on me.
I am again in the middle of the ocean- clueless. Though compared to the beginning I am 75-80% better. My symptoms are always the same only the severity decreased with the surgeries. I still have the belief that it is nothing but a sleeping time breathing issue which is somehow not detected by the sleep study. I came to know about the Esophagus pressure monitoring tests, but my doc told me it is no more done as it is too problematic (Let me know if you know any place in the USA where it is still performed). Please let me advise on what can I do at this level? Or, what else it could be except sleep apnea? What other tests I can do?
You may think that I am biased to do surgeries as I already had six surgeries by now. But I promise I am not. I just need to get out of this hell. As initially nothing else provided relief except surgeries so I continued. And some of them made a huge difference. DISE was done before every major one and decisions were made based on that. I do not regret about the surgeries I had and if needed I would be happy to do the permanent tracheostomy even. But I want to get out of this problem at any cost.
Thanks for your time.
Hello everyone,
I apologize for this long post. I have been suffering from the sleep-related issue (most probably UARS) since 3rd, Aug 2016 (Strangely, it started suddenly from one day). I was trying to sleep in a flight and every time I was dozing into sleep, I would be awakened up by twitching of feet or hand. I ignored it that time, but since then this became permanent every time I go to sleep. Within a week my symptoms arrived:
• Feeling sleepy/ drowsy all over the day. Fatigue (even after sleeping for 11 hours)
• Unrefreshing sleep.
• Low concentration/ alertness
• Low memory (short & Long term both)
• Hard to learn new things. Thinking problem. (In one term, it feels like a brain fog/ dull brain)
• Blunt headache every day. Especially after waking up.
• Wake up from sleep with breathlessness, choking, sometimes with an elevated heartbeat. Sometimes I wake up with a feeling of breathing struggle and as soon as I move my tongue, I start to breathe properly again. Other times I will wake up by twitching of hand or leg. Or sometimes I will wake up for no reason. Sleep seems very light. Any outside disturbance (e.g. sound) will wake me easily. The frequency of waking up has been reduced from once in every 5 min to 8-9 times per night now (Due to improvements from surgeries done)
The doctors were confused at the beginning as I am young, not overweight, and do not snore. Anyway, got my 1st Lab sleep study on June 17, AHI: 8. Doctors gave me CPAP (Fixed, 11 H2Ocm). I tried for 3 months but no improvement in the symptoms. I contacted the doctor back, but they claimed according to their data (from the CPAP card) it is working. However, I was not seeing any change.
Anyway, I started to seek a solution from other doctors and at some point, I had a septoplasty (Feb 18). It reduced 20% of my issues. So, I became sure that my problem is related to sleep time breathing.
On Aug 18 I brought a pulse oximetry device for overnight recording. Started to keep the record for every night. It was very bad. Drop over 4% will be 16-20 times per hour. Nadir Oxygen would be 78.
I had the 2nd sleep study (home) on Sep 18, AHI 8.5. A doctor did a Sleep endoscopy then and for the 1st time, we found severe obstruction even though mild sleep apnea (Obstruction at soft palate + Tongue base). Had a “UPPP + tonsillectomy + Lingual tonsil removal” then. Which removed another 20% of the issue. My oximetry also got improved. Now it would be 10-12 times per hour (drop over 4%) and nadir oxygen would be 85.
I tried an auto CPAP this time did not make any difference. Did the next lab study in Feb 2019. AHI 7. They again gave me the ResMed cpap|H2O 13cm| Again did try but no benefit. The sleep center continued to claim it is working and I should not need to go for any of the surgeries I had. But I know how much difference was created by those surgeries.
By this time, I and my doctors tried to check if anything else has been hiding behind this. So, I have been through numerous other tests including EEG, ECG, MRI, blood, urine tests, MSLT(test for narcolepsy), and whatnot. I have been seen by neurologists, family med, rheumatologists, psychologists, pulmonologists, and many other specialties. Not a single thing came out problematic.
In 2019, I met a big doctor in the field of sleep surgery. He did a DISE again and there was still obstruction at the tongue base level. The obstruction at the tongue base level was observed to be solved by the last UPPP. So, he then did a Genioglossus advancement. Surgery was done correctly but unfortunately, there was not a slightest development after two months.
Later on, based on suspicion that I might have issues with my sinus the same doctor ordered a CT scan of the nose. This showed severe blockage in the sinus. So, I had to go through endoscopic sinus surgery. Within a week my sleep got better. Within two weeks my other symptoms also got better. I will say it has removed an additional 35% of the problem severity. So, I am now left with 25% from the initial situation. My oxygen curve also made a sharp improvement. Nadir point came to 90. And a 4% drop is 6-8 times per hour. Sometimes for 30-50 min, even it comes as an almost straight line (though it does not happen every night).
I again tried CPAP (with 4 different masks). Dental sleep apnea device (custom made). Sleeping position, sleeping in an elevated position, tongue exercise, and a big list of other things. Nothing works at all.
I had another follow-up sleep study. AHI 5.4. and another with Dental Device, AHI 7.1, RI: 9.1. Both are home study.
June 20: Had another DISE (3rd). It shows a similar blockage as 2nd one. No obstruction in soft palate/ epiglottis but blockage at tongue base. Had gone through Tongue radio frequency (2 times- in one month apart) + Hyoid suspension (done with the 2nd radiofrequency). The result is negative. Not a slightest improvement. I and the doctor both are frustrated. He thinks it is not from sleep apnea. He thinks it is something else, but he has no idea what it could be. He does not want to do anymore sleep apnea treatment on me.
I am again in the middle of the ocean- clueless. Though compared to the beginning I am 75-80% better. My symptoms are always the same only the severity decreased with the surgeries. I still have the belief that it is nothing but a sleeping time breathing issue which is somehow not detected by the sleep study. I came to know about the Esophagus pressure monitoring tests, but my doc told me it is no more done as it is too problematic (Let me know if you know any place in the USA where it is still performed). Please let me advise on what can I do at this level? Or, what else it could be except sleep apnea? What other tests I can do?
You may think that I am biased to do surgeries as I already had six surgeries by now. But I promise I am not. I just need to get out of this hell. As initially nothing else provided relief except surgeries so I continued. And some of them made a huge difference. DISE was done before every major one and decisions were made based on that. I do not regret about the surgeries I had and if needed I would be happy to do the permanent tracheostomy even. But I want to get out of this problem at any cost.
Thanks for your time.
most of us currently on the forum have gone our own way with our therapy. and it's time for you to do the same.