Not sure what to do....need advice

[Stanley56]

This will probably be kind of long so please bear with me. First a quick recap of my story:

First diagnosed in Jan/2006. Compliant on a brick and with a full face mask until Nov 2009 when I came down with Shingles. Full face mask rubbed the bridge of my nose raw, but I suffered through it. Off of CPAP entirely from Nov 2009 to March 2013.

Started suffering from nocturia in late 2012 and after dealing with it for a while realized it can be a side effect of sleep apnea so I went back in to see my sleep doctor and got back on a new machine and mask in March of 2013. Spent about 90 days on a loaner Respironics machine and then got my brand new ResMed and using my Hybrid mask my AHI numbers were consistently under 1.0 and my nocturia went away. Everything was going great and I was 100% compliant and sleeping really well.

After a while I started noticing that I was having balance problems and I was constantly feeling light headed and was suffering from low grade headaches. After some research I determined that these symptoms can be a result of CPAP therapy. Something to do with the pressure created on your eardrums. I made the decision to go off of CPAP for a little while to see what happened. I am fully aware of the risks involved, but I figured I had been off of therapy for 3 1/2 years so a few days should be OK. Also I've been monitoring my Oxygen/Sat levels and they haven't gone below 96% yet. And the thing is my symptoms are about 90% better having been off of CPAP for about a week. So now I am pretty convinced that the CPAP was causing my symptoms.

So now I have to figure out what to do. I need to get back on CPAP or figure out an alternative. However, I cannot live with the symptoms that I was having. Based on my internet research there are a few possibilites:

1) Some say increasing EPAP can help. Mines been set on one so I could boost that up and see what happens.
2) Some say nasal pillow masks can make this situation worse so I could try and find another mask I can live with. I hate this idea because I really like my Hybrid and it has been giving me good results. I cannot do a full face that puts pressure on the nose bridge. I've thought about trying the FitLife.
3) Some say the ResMed machine seems to be worse about causing this situation. I really don't remember when these symptoms started because they seemed to come on gradually until they got almost unbearable so I can't really say if they only started after I went on the ResMed. Again I would hate to go back to the Respironics because my results have been so much better with the ResMed. Averaged 3 AHI with Respironics and less than 1.0 with the ResMed.

Please give me any advice that might seem appropriate. I eagerly await your responses. Thanks.

[Julie]

Cpap lowers blood pressure, so if yours is on the low side to begin with, you need to be careful about that, possibly lowering your Cpap pressure settings a notch to see if it makes a difference, and if not, then maybe your MD could suggest something or even try some meds if necessary (though that's not done very often - low BP is normally only a problem if you pass out when standing up too quickly, etc.).

[Pugsy]

You say EPAP at 1 but I assume you mean EPR at 1...EPR being the ResMed exhale relief and by increasing EPR you will be decreasing the overall pressures used slightly.

CPAP pressure does seem to cause some instability in the inner ear for some people. Probably related to the Eustachian tubes that connect the airway to the inner ear. I think it would be a good idea to have an ENT exam just to make sure nothing else is going on in the inner ear that the cpap pressure might be aggravating...so I will suggest that visit mainly for a precautionary thing. Always a good idea to cover as many bases as possible. Especially since this is a new symptom and while it might be aggravated by the cpap pressure....it wouldn't be impossible for something else to be going on in there.

What to do? If it were me I would increase EPR and watch the AHI to see what happens. A little increase in AHI (if it even happens) might be an acceptable compromise if the inner ear issues went away.

[Stanley56]

You say EPAP at 1 but I assume you mean EPR at 1...EPR being the ResMed exhale relief and by increasing EPR you will be decreasing the overall pressures used slightly.

CPAP pressure does seem to cause some instability in the inner ear for some people. Probably related to the Eustachian tubes that connect the airway to the inner ear. I think it would be a good idea to have an ENT exam just to make sure nothing else is going on in the inner ear that the cpap pressure might be aggravating...so I will suggest that visit mainly for a precautionary thing. Always a good idea to cover as many bases as possible. Especially since this is a new symptom and while it might be aggravated by the cpap pressure....it wouldn't be impossible for something else to be going on in there.

What to do? If it were me I would increase EPR and watch the AHI to see what happens. A little increase in AHI (if it even happens) might be an acceptable compromise if the inner ear issues went away.

Yes EPR at 1. Sorry. I'd thought of the ENT visit also. I'll need to get a referral and I'd like to find one who understands CPAP. Maybe my sleep Doc can recommend one.

Agree that a little increase in AHI would be an acceptable compromise, but I can't live with those symptoms. It doesn't sound so bad, but I thought I was going crazy for a few days.

[john5757]

Also large leaks can cause a problem with fluctuating pressure in the middle ear and may effect balance. Had that problem before. Fluid buildup or infection in the middle ear can also cause balance issue. Maybe you need to see a ENT to rule out other causes.

[StuUnderPressure]

After a while I started noticing that I was having balance problems and I was constantly feeling light headed and was suffering from low grade headaches. After some research I determined that these symptoms can be a result of CPAP therapy. Something to do with the pressure created on your eardrums.

You may just have some rocks (actually crystals) loose in your inner ear.

And, NO, I am not being an ass or overly insensitive!
That condition actually exists and is more common than you might believe.

Try Googling B.P.P.V. (Benign Paroxysmal Positional Vertigo)

After over 15 years on CPAP / APAP, I suddenly came down with the same symptoms.

Cause can be a severe bump to the head - OR sometimes it just happens on it's own. Mine just occurred on it's own.

If B.P.P.V. is what you have, it was NOT caused by your CPAP use.
At least, that is the opinion of my ENT, an Audiologist who did an ENG test to determine that I indeed did have B.P.P.V., and an Occupational Therapist who specializes in treating it.

The cure is a really very simple procedure & is claimed by all 3 Medical professionals to be OVER 90% successful.

Since you canNOT bend your head down or up (side to side is OK) for 48 hours after the procedure (so the crystals stay where they belong), I will not have the procedure done until 7-18-13 because of other obligations that preclude me from being that still for 48 hours. For those 48 hours, you canNOT sleep in a bed & MUST sleep in a recliner. That is not a problem for me, since I sleep in a recliner anyway because of some bad discs in my lower back. I will just not be able to recline more than 45 degrees for those 48 hours.

Even though I have not yet had the procedure done, in just 4 days after my diagnosis, I have learned of 5 other people who went through the procedure & it worked the FIRST time in 4 of those people. The 5th person had to have the procedure done a 2nd time & it worked then. We all think it did not work the first time because she did not keep her head from bending down or up for the full 48 hours.

The path I took to my diagnosis was that I mentioned it to my Cardiologist as my regular maintenance visit. He opined that it was NOT caused by anything with my heart nor a circulation problem.

Then, I went to my ENT (who also has a speciality in Sleep Medicine).
He determined that I did not have any fluid behind my eardrums & could find no other visible reason for my dizziness.
He is the one who referred me to an Audiologist who also specializes in "Balance Testing".

After getting the results from the Audiologist, my ENT referred me to this Therapy Group (Physical & Occupational) for them to do the procedure.
It is actually an Occupational Therapist who will do the actual procedure.

[avi123]

This will probably be kind of long so please bear with me. First a quick recap of my story:

First diagnosed in Jan/2006. Compliant on a brick and with a full face mask until Nov 2009 when I came down with Shingles. Full face mask rubbed the bridge of my nose raw, but I suffered through it. Off of CPAP entirely from Nov 2009 to March 2013.

Started suffering from nocturia in late 2012 and after dealing with it for a while realized it can be a side effect of sleep apnea so I went back in to see my sleep doctor and got back on a new machine and mask in March of 2013. Spent about 90 days on a loaner Respironics machine and then got my brand new ResMed and using my Hybrid mask my AHI numbers were consistently under 1.0 and my nocturia went away. Everything was going great and I was 100% compliant and sleeping really well.

After a while I started noticing that I was having balance problems and I was constantly feeling light headed and was suffering from low grade headaches. After some research I determined that these symptoms can be a result of CPAP therapy. Something to do with the pressure created on your eardrums. I made the decision to go off of CPAP for a little while to see what happened. I am fully aware of the risks involved, but I figured I had been off of therapy for 3 1/2 years so a few days should be OK. Also I've been monitoring my Oxygen/Sat levels and they haven't gone below 96% yet. And the thing is my symptoms are about 90% better having been off of CPAP for about a week. So now I am pretty convinced that the CPAP was causing my symptoms.

So now I have to figure out what to do. I need to get back on CPAP or figure out an alternative. However, I cannot live with the symptoms that I was having. Based on my internet research there are a few possibilites:

1) Some say increasing EPAP can help. Mines been set on one so I could boost that up and see what happens.
2) Some say nasal pillow masks can make this situation worse so I could try and find another mask I can live with. I hate this idea because I really like my Hybrid and it has been giving me good results. I cannot do a full face that puts pressure on the nose bridge. I've thought about trying the FitLife.
3) Some say the ResMed machine seems to be worse about causing this situation. I really don't remember when these symptoms started because they seemed to come on gradually until they got almost unbearable so I can't really say if they only started after I went on the ResMed. Again I would hate to go back to the Respironics because my results have been so much better with the ResMed. Averaged 3 AHI with Respironics and less than 1.0 with the ResMed.

Please give me any advice that might seem appropriate. I eagerly await your responses. Thanks.

Reply,

If you enter your age I think that I can help you with the items that I have highlighted.

[Janknitz]

If it all boils down to pressure in your sinuses and estuation tubes, I believe there is a pressure relieving ear plug you can try. It's worth checking with an ENT to rule out BPPV and see if they can recommend something to release the pressure. Also a good idea to watch your BP as already suggested.

[Stanley56]

Cpap lowers blood pressure, so if yours is on the low side to begin with, you need to be careful about that, possibly lowering your Cpap pressure settings a notch to see if it makes a difference, and if not, then maybe your MD could suggest something or even try some meds if necessary (though that's not done very often - low BP is normally only a problem if you pass out when standing up too quickly, etc.).

Thanks for the reply. My BP is not low however.

[Stanley56]

After a while I started noticing that I was having balance problems and I was constantly feeling light headed and was suffering from low grade headaches. After some research I determined that these symptoms can be a result of CPAP therapy. Something to do with the pressure created on your eardrums.

You may just have some rocks (actually crystals) loose in your inner ear.

And, NO, I am not being an ass or overly insensitive!
That condition actually exists and is more common than you might believe.

Try Googling B.P.P.V. (Benign Paroxysmal Positional Vertigo)

After over 15 years on CPAP / APAP, I suddenly came down with the same symptoms.

Cause can be a severe bump to the head - OR sometimes it just happens on it's own. Mine just occurred on it's own.

If B.P.P.V. is what you have, it was NOT caused by your CPAP use.
At least, that is the opinion of my ENT, an Audiologist who did an ENG test to determine that I indeed did have B.P.P.V., and an Occupational Therapist who specializes in treating it.

The cure is a really very simple procedure & is claimed by all 3 Medical professionals to be OVER 90% successful.

Since you canNOT bend your head down or up (side to side is OK) for 48 hours after the procedure (so the crystals stay where they belong), I will not have the procedure done until 7-18-13 because of other obligations that preclude me from being that still for 48 hours. For those 48 hours, you canNOT sleep in a bed & MUST sleep in a recliner. That is not a problem for me, since I sleep in a recliner anyway because of some bad discs in my lower back. I will just not be able to recline more than 45 degrees for those 48 hours.

Even though I have not yet had the procedure done, in just 4 days after my diagnosis, I have learned of 5 other people who went through the procedure & it worked the FIRST time in 4 of those people. The 5th person had to have the procedure done a 2nd time & it worked then. We all think it did not work the first time because she did not keep her head from bending down or up for the full 48 hours.

The path I took to my diagnosis was that I mentioned it to my Cardiologist as my regular maintenance visit. He opined that it was NOT caused by anything with my heart nor a circulation problem.

Then, I went to my ENT (who also has a speciality in Sleep Medicine).
He determined that I did not have any fluid behind my eardrums & could find no other visible reason for my dizziness.
He is the one who referred me to an Audiologist who also specializes in "Balance Testing".

After getting the results from the Audiologist, my ENT referred me to this Therapy Group (Physical & Occupational) for them to do the procedure.
It is actually an Occupational Therapist who will do the actual procedure.

If this were my problem would staying off of CPAP for a week clear up my symptoms?

[Stanley56]

This will probably be kind of long so please bear with me. First a quick recap of my story:

First diagnosed in Jan/2006. Compliant on a brick and with a full face mask until Nov 2009 when I came down with Shingles. Full face mask rubbed the bridge of my nose raw, but I suffered through it. Off of CPAP entirely from Nov 2009 to March 2013.

Started suffering from nocturia in late 2012 and after dealing with it for a while realized it can be a side effect of sleep apnea so I went back in to see my sleep doctor and got back on a new machine and mask in March of 2013. Spent about 90 days on a loaner Respironics machine and then got my brand new ResMed and using my Hybrid mask my AHI numbers were consistently under 1.0 and my nocturia went away. Everything was going great and I was 100% compliant and sleeping really well.

After a while I started noticing that I was having balance problems and I was constantly feeling light headed and was suffering from low grade headaches. After some research I determined that these symptoms can be a result of CPAP therapy. Something to do with the pressure created on your eardrums. I made the decision to go off of CPAP for a little while to see what happened. I am fully aware of the risks involved, but I figured I had been off of therapy for 3 1/2 years so a few days should be OK. Also I've been monitoring my Oxygen/Sat levels and they haven't gone below 96% yet. And the thing is my symptoms are about 90% better having been off of CPAP for about a week. So now I am pretty convinced that the CPAP was causing my symptoms.

So now I have to figure out what to do. I need to get back on CPAP or figure out an alternative. However, I cannot live with the symptoms that I was having. Based on my internet research there are a few possibilites:

1) Some say increasing EPAP can help. Mines been set on one so I could boost that up and see what happens.
2) Some say nasal pillow masks can make this situation worse so I could try and find another mask I can live with. I hate this idea because I really like my Hybrid and it has been giving me good results. I cannot do a full face that puts pressure on the nose bridge. I've thought about trying the FitLife.
3) Some say the ResMed machine seems to be worse about causing this situation. I really don't remember when these symptoms started because they seemed to come on gradually until they got almost unbearable so I can't really say if they only started after I went on the ResMed. Again I would hate to go back to the Respironics because my results have been so much better with the ResMed. Averaged 3 AHI with Respironics and less than 1.0 with the ResMed.

Please give me any advice that might seem appropriate. I eagerly await your responses. Thanks.

Reply,

If you enter your age I think that I can help you with the items that I have highlighted.

I am a 56 year old male.

[Pugsy]

If this were my problem would staying off of CPAP for a week clear up my symptoms?

Unlikely that you problem is/was BPPV but not impossible to rule out. That's part of the reason I suggested the ENT checking things out.

My first thought was the BPPV thing too. I have had it happen to me and it is something I wouldn't wish on my worst enemy (well, maybe a couple of them ) but when you said that symptoms cleared up when you stayed off the cpap machine then I had to set that idea aside.
It could have been a BPPV thing and just a coincidence that it went away at the same time because BPPV will do that...come and go with no rhyme nor reason to it.

A truer test would be to go back on the cpap machine and see if the symptoms returned and you would have a more definitive causation to blame. You may or may not have already done that experiment. If it were me...I know I would be leery of repeating that experiment just to make sure the pressure was indeed the culprit. I don't like that vertigo thing. The last time I had it really bad those damn rocks got stuck and wouldn't move back to where they were supposed to be and I had to literally crawl to the bathroom..puking along the way... for several hours and couldn't walk without bouncing off the walls for 3 days.

If it were me I would be trying the increasing the EPR thing and if that didn't work I would be figuring out how to make some sort of compromise with the pressures...maybe limit the maximum a bit from where it is going to (not necessarily where your current settings will allow it to go to)...just because it can go to 12 doesn't mean it does...for all we know you may never go above 10 cm...so you need to evaluate your reports closely in terms of where the pressure wants to go.
And yes...I would still keep the ENT appointment on the plate. Most likely you can't get in anytime soon...so get the appointment made and in the meantime see if EPR increase offers any relief.

[avi123]

Replies to

,

About Shingles- "Fortunately there are both preventative and treatment options for shingles. A single-dose vaccine, Zostavax, was approved by the Food and Drug Administration for people over age 60 in 2006. In March 2011 the FDA also approved the vaccine for people over 50. Vaccination prevents shingles in the majority of recipients and greatly reduces the risk of post-herpetic neuralgia in others. Pregnant woman, people with immune-deficient conditions and certain cancers, and those allergic to neomycin, gelatin, or other vaccine components should not get the vaccine."

About Vestibular system collapse (Balancing, Positional Vertigo, Tinnitus, etc.) the treating specialists are here:

http://www.Vestibular.org

"Falls" are often the foremost complications leading to end-of-life for seniors (Consumer Reports).

Headhaches? Probably hangovers from medications and/or inadequate CPAP treatment.

Nightly peeing? taking Flomax (men and women) helped me.

[idamtnboy]

If B.P.P.V. is what you have, it was NOT caused by your CPAP use.
At least, that is the opinion of my ENT, an Audiologist who did an ENG test to determine that I indeed did have B.P.P.V., and an Occupational Therapist who specializes in treating it.

The cure is a really very simple procedure & is claimed by all 3 Medical professionals to be OVER 90% successful.

Is that the procedure where they put you into a frame, or whatever, and slowly rotate you 360° to move the crystals to the part of the ear away from the nerves? My brother had that done and as far as I know it cured his vertigo problem. That was a few years before he went on CPAP.

[ughwhatname]

If B.P.P.V. is what you have, it was NOT caused by your CPAP use.
At least, that is the opinion of my ENT, an Audiologist who did an ENG test to determine that I indeed did have B.P.P.V., and an Occupational Therapist who specializes in treating it.

The cure is a really very simple procedure & is claimed by all 3 Medical professionals to be OVER 90% successful.

Is that the procedure where they put you into a frame, or whatever, and slowly rotate you 360° to move the crystals to the part of the ear away from the nerves? My brother had that done and as far as I know it cured his vertigo problem. That was a few years before he went on CPAP.

There may be different ways of treating it, though my niece had it done, and it took all of a minute or so and the doctor just rotated her head, turned another way, etc. There was a pattern to it. I once checked it out on youtube. Quite fascinating. She got relief immediately, and has had no trouble since.