Video proof of me struggling to breathe last night - UARS?

[ardenum]

I just got off the damn phone with my sleep doctor. He claims he looked at my report for last night, and didn't see any issues and that my AHI was low. He also didn't have any comments about my NIGHT SWEATS, even though they were severe last night.

Another sleep doctor I went to, that puts a PES device in your nose and down your throat called me. They said they use it to measure negative pressure in the throat. I made a sleep study appointment with them, but it isn't until December. Not sure if this will benefit me or not?

It will, thats how to diagnose UARS.

How will that help me though? UARS comes before sleep apnea, correct? 

I'm already on BI-LEVEL and dental appliance for sleep apnea. When I talked to the new sleep doctor, I asked them how they treat UARS, and that is usually with CPAP/BI-LEVEL. 

I also had Environmental Allergy testing, and this showed I was allergic to Wheat Cultivated, and a few other things like Cedar. I had some simple food allergy tests earlier in the year and that didn't show anything.

Do you think this all could be caused my food allergies closing my throat more at night, some nights and causing unwell feelings?

I used to feel faint and light headed and generally unwell with heart palpitations and cold sweats every time i went to bed, i started taking over the counter anti-histamine and since then it hasnt happened. Since its safe why dont you give it a try? I use 10mg cetirizindihydrochlorid.

You might also have laryngospasms, you can try checking it at home, learn to apply the Larson maneuver, when you get hit with the throat closing press hard, if its really painful, you know you're doing it correctly, hold for 15-20s, if it helps, you've succesfully diagnosed yourself.

Maybe you could benefit from some Balloon dilatation, if UARS is in the larynx area.

[SarcasticDave94]

IMO it does seem you're suffering from a side effect from the med. You've contacted the doc. Try to get a face to face visit and discuss it. If this is a side effect, maybe there's an alternate med.

[Sleeprider]

Not to step on Fred's next post, I still don't see a problem, particularly UARS in your graphs. That puts me in agreement with your sleep doctor, and very cautious about the PES testing. I already posted and linked to side effects of high concern for your medication, and think all the rest of this is a distraction.

[Gideon]

No stepping this time SR.

We exploded key portions of your major event and like SR I see nothing substantial.  A medication interaction seems like a possible call but we don't have the expertise here to subscribe meds or to alter them, only enough to suggest them as possible talking points with your doctor.

Your "numbers" are what we would call fantastic.

[MyronH]

IMO it does seem you're suffering from a side effect from the med. You've contacted the doc. Try to get a face to face visit and discuss it. If this is a side effect, maybe there's an alternate med.

Not to step on Fred's next post, I still don't see a problem, particularly UARS in your graphs.  That puts me in agreement with your sleep doctor, and very cautious about the PES testing.  I already posted and linked to side effects of high concern for your medication, and think all the rest of this is a distraction.

No stepping this time SR.

We exploded key portions of your major event and like SR I see nothing substantial.  A medication interaction seems like a possible call but we don't have the expertise here to subscribe meds or to alter them, only enough to suggest them as possible talking points with your doctor.

Your "numbers" are what we would call fantastic.

I went to see my Electrophysiologist today. He spent at least 30min with me today, and I talked to him about the Multaq medicine. He did an EKG on me and that was normal. I told him I was concerned about the Multaq causing stress on my heart and about all it's symptoms. I told him my symptoms. He said it was possible Multaq is causing symptoms in me, but he said it was very atypical from all the patients he's seen. He said the echocardiogram in May was excellent and EF I think was either 55-60%. He didn't want to order another Echo. He did say though that Multaq is a strong heart drug, like he has several times to me.

He said that I can plan to just stop the drug, and see what happens. He was not concerned if i were to just stop it. Then we could see if my symptoms go away. But he really doesn't think it is the Multaq causing the symptoms. He said my AFIB could come back, and then if it does, decide what to do. He also cleared me for the gym and said I was good to do anything. Even though I told him that my heart rate elevates quicker then it did when i started the drug.

He then said, that I should look at going to Mayo Clinic. He said they have a multipath approach to finding out answers instead of going to individual doctors in my area. I actually did have an appt set up with Mayo Clinic earlier in the year but cancelled it, since I had my gallbladder removed and was feeling better. But now I'm back to having some symptoms again.

Here is a short 2min video (.wmv 10MB) that shows the end before i woke up. My legs are both bent up at the knee. They stayed like that for roughly 2 hours, which is how long this whole breathing thing. Sleep study did find I had restless leg syndrome, but the doctor never said much about it nor prescribed medicines.

I still have NO ANSWER for my NIGHT SWEATS either from any doctor. Although I think they only occur when I have these weird breathing episodes. I did make an appointment with an allergist, and plan to see a Spine doctor to discuss my forward neck posture and curved back.

1. So this doesn't look like UARS?
2. I'm at a loss. What is causing my night sweats and this heavy breathing then?
3. I've tried taking Flonase prescribed by ENT doctor in past. This seems to help breathing thru nose. But it also caused anxiety in me.
4. So I shouldn't do the new sleep study with PES?
5. It seems that even with minor leaks, I have issues. I thought the machine should compensate for minor leaks?
6. In my video, do you think my head is too high compared to the rest of my spine? Should I use a normal pillow instead of the neck pillow?

***VIDEO DOWNLOAD HERE***

[SarcasticDave94]

Keep us updated. I do hope you get it resolved ASAP.

[Sleeprider]

I viewed your video and determined you need a puppy

[ardenum]

After seeing the video I agree with Sleeprider, all the rest is a distraction. When you said you had your legs bend up I understood it literally, as if you were in a sitting position laying on the back, think mel brooks movie-esque. I actually sleep the whole night with my legs bend at the knees. It's due to my lower back, it makes it more comfortable.

As for the night sweats and heavy breathing attacks, I also get that but I attribute that to my ME/CFS.

[MyronH]

Well not to reiterate but my electrophysiologist did an EKG and he said it looked good. And I'm sure he compared it to my precious ones like he always did. He said he sees no issues with my heart. He did say I can just stop the Multaq and see if my symotoms improve. During that night I recorded my heart rate stayed 60-70 during that weird breathing episode. So I'm not too sure it could still be my heart. My doctors seem to say everything is fine with my heart.

I contacted my cardiologist about another echo but so far no response.

I think since this has gone on for so long and all previous tests have been negative on my heart, they all think it is something else. And I'm now tending to agree with them.

Looking back at my medical records this all started 11 years ago. I started having tachycardia and other issues in my sleep. At that time they just put me on beta blockers and didn't even think about a sleep study.it wasn't until last year I got my first APAP machine.

My cardiologist assistant ordered extensive blood work earlier this year and said I had inflammation. Probably from the fast food and junk food I eat at times.

My ENT did environmental Allegan testing on me and results showed allergy to cultivated wheat, corn, and a couple other minor things.

I got an allergist appointment Friday and will discuss food testing with them and go from there. The night sweats are a mystery though. Panic or anxiety in my sleep perhaps?

[MyronH]

So early this morning around 5:50am, I woke up with feeling chest was overworked with a slight burning sensation. I woke up with very dry mouth again. In the video showed I raised my legs a bit again. I stayed in that position Video also shows a little deeper breathing during the time of higher pressures.

I checked my graphs, and the machine shot up to the Max IPAP 18 during this time and stayed at the higher pressures. It seems that on some nights, even Max IPAP 18 isn't high enough to get through some obstructions. I was using a regular pillow last night, instead of my "ergonomic neck pillow" that tilts head back. But I did use my nceck brace. The previous nights, my pressure hovered at 8/4, 9/4. So it's odd that it hit IPAP 18 last night.

1. Since my chest felt overworked, do you think this UARS and that I should proceed with PES sleep study? 
2. How would UARS look on the graphs if it truely was UARS?
3. Why would pressure raise when there are no OA's that keep occurring? Does the machine raise it because of flow limitation?