Reassurance Maybe? Cant be Apnea, can it?

Hello Everyone, I have been lurking here for a few months after being diagnosed with Sleep Apnea in March 2014. This might be long and I appreciate any input / feedback anyone might have. Around 9 years ago I started getting dizzy (really dizzy) - I remained violently dizzy for a year or so (and it remains, in one form or another, to this day). I saw the doctors, had an MRI, Spinal Tap, etc. and the eventual diagnosis was "Vestibular Neuritis" which was uncompensated. No treatment for the diagnosis so just live with it. I wasn't buying it. I consider myself a logical person who, with enough time and effort, could find out what was wrong with me and fix it. I checked every symptom, became super diligent in watching everything my body was telling me - and inadvertently became health anxious - then panic attacks. I have been battling anxiety and panic since then - with peaks and valleys but pretty serious. Saw the doctors and was diagnosed with Panic / GAD - clonazipam .25 each day (no help really). A little about myself - Now 37 (was a healthy 28 when this started). Smoked on and off over the years (lightly) mostly as a reaction to stress. Six feet tall and 180 lbs. A pretty successful executive at a large corporation. When I am feeling good - I run 15 miles a week - when I am not, I can barely drive home. In my heart, I cannot accept the anxiety as being singular - there HAS to be something fueling it as it follows these symptoms. My doctors are confused as my anxiety peaks and valleys every few DAYS (which is highly unusual - they typically happen in longer sprints). Each April, it all ramps up again for me (I have no idea why) - dizziness, chest pain, stomach pain, confusion, fatigue, no motivation, visual disturbances, false motion, jelly legs, bad balance, shallow breathing, etc. - they all get worse and worse until its all I can think about and it consumes my life. This is so depressing because I have two children (3 years and 6 months) and I can barely pay attention to them when this happens. This year it hit me really bad and I started getting chest pains out of the blue. Just to be absolutely sure, I went to the ER and everything heart wise checked out. Had a stress test - aced that - diagnosed acid reflux (kinda doubt that its causing all this pain). Finally went for the sleep study and they reported: Mild OSA @14.4, Supine @ 27.9 and Supine REM @ 47.2. This seemed pretty definitive so I got a CPAP while waiting for the second test / prescription. Its a S9 Auto set to APAP 5-15, slept with it for a few days and, using Sleepyhead, saw my AHI at about 3.0 average for the nights I wore it. But, upon waking, I felt MUCH worse than before. Still waiting for the prescription after my second sleep study and I don't really think that my apnea can cause all these symptoms. Can anyone relate? I swear I've read most of the posts on this site (health anxiety OCD kicked in) and I can guess the response but I was hoping someone might have had a similar series of events. Either way I am resigned to trying the new CPAP (once I get it) for at least a month to see if there is any improvement - but I feel like this is not the answer for me. It might help me feel a little bit better but I also feel I should start pursuing other avenues in the meantime. Thoughts, questions, suggestions or comments?

Hi, what a lousy time you've had, and I can only imagine what that kind of life change has been like - congrats on staying with it and continuing to look for answers.

I will say I doubt very much that OSA is 'the' reason behind all of your problems - highly unlikely - obviously something else is going on, but from what you reported, maybe you could look into this... Have you ever heard of positional apnea? Can you try (for a week or so consistently) to keep yourself off your back when sleeping and possibly home test after a few nights on the plan to see if you qualify at all as having apnea (to any meaningful extent - even non-apnea, 'regular' people have the odd event or so). There are all kinds of tricks to help, like sewing tennis balls to the back of your jammies, putting foam wedges behind you, etc. etc. You absolutely should wear an overnight recording oximeter to see if your 02 drops to any extent, and for how long, but It would be nice if you could at least know that this is one thing you don't really have to deal with except to be careful about how you sleep (as others have done successfully). I have no way of course of knowing whether the above fits you or not, but it has for some - as has wearing a 'soft' and small cervical collar that you can get at most pharmacies to keep your head from falling forward and blocking your airway has been very useful for many as well.

Hi Julie, I have been diagnosed with Apnea (Supine REM 47.2 AHI) and have tried to stay off my back (pillows, kids toys, etc.) but I dont see any real relief from trying these methods. My O2 dropped to 86% during my sleep study but I only spent 0.5% below 90% for the night. I do often wonder if extended sleepiness due to Apnea is at the root of my symptoms - but I will have to try the new CPAP and find out. I will certainly post here what I discover in case anyone else out there has been going through what I have struggled with for the past decade.

Try the collar, nothing to lose!

I suspect you have two unrelated problems. The data from the sleep lap certainly says you have sleep apnea, but sleep apnea is not known to cause dizziness. It can lead to anxiety, lack of sleep, and heart problems. So, it could be complicating things. It should definitely be treated.

To me, it sounds like you have ear problems in addition to sleep apnea. I discovered by accident that I have a long time slight disagreement between my eyes and ears. Back in 2011 (pre-cpap, though I did have sleep apnea), I woke up to a severe vertigo. With me eyes open, the room was spinning fast. I could not walk. I was throwing up, and couldn't even keep a sip of water down. With my eyes closed, I felt like I was in an earthquake, moving, but not sick. I went to the ER, and my eyes were moving, attempting to following the perceived motion. They put me on two medications, which brought it under control. A fee days later, it started up again. It wasn't as bad, so I took the medication and waited for improvement. None. I was stumbling through the house, trying to walk through familiar areas that seemed to be constantly moving. Back to the ER. They did a ct scan that time, found nothing serious, and decided I probably had a virus in my ears. I went to an ENT, who checked me out, reviewed the ct scan, did pressure and hearing tests, and said everything was fine. Probably just a virus.

Since I was going on a trip in a few days and would be hiking where there would be steep edges and miles from help, I was told to keep taking the meclizine 3 times a day to prevent the vertigo from coming back. I discovered that my fear of heights (always holding me back) was so much better. No more weak, shaky legs or queasy sick feeling. I always thought that was fear, but it was a physical reaction to my eyes and ears being confused, and those physical reactions were enough to make me fearful of dangerous edges. Who wants to stand next to a cliff edge while feeling shaky and queasy?

I have since found that certain lighting situations will bring back a little of that queasy feeling, and I can take the meclizine to make it go away. I have not had a full return of the vertigo. I started cpap in April of 2012. I suspect the doctors were correct that I did have a virus in my ears, and that it helped to uncover an underlying issue of my ears being slightly out of agreement with my ears, which causes problems in certain situations. It has made a huge difference in my fear of heights and some other situations now that I can recognize the problem and correct it.

Saw the doctors and was diagnosed with Panic / GAD

Classic symptom of sleep apnea - anxiety and/or panic attacks. Misdiagnosed and improperly prescribed.

Each April, it all ramps up again for me (I have no idea why)

Just a guess, pollen season starts and you have some congestion which can make sleep apnea worsen. More severe sleep apnea yields anxiety/panic attacks.

diagnosed acid reflux

Acid reflux can irritate the linings of the airway causing them to swell and making the sleep apnea worse.

I don't really think that my apnea can cause all these symptoms.

But it could.

In any case your plan of action should be,

- Do CPAP. There is no try.
- Treat acid reflux - elevate head of bed on 4-inch blocks, no eating within four hours of bedtime, observe which foods make it worse and avoid them.
- Google sleep hygiene and practice it well.
- Moderate exercise on a regularly basis.
- Good diet.
- Do CPAP. There is no try.
- Do CPAP. There is no try.

You can completely turn your health around.

If you get a good CPAP therapy going and still have the dizziness, then start to pursue it separately. Although there is really nothing separate, we are a whole, every part affects every other part.

Yes, as Julie said, do stay off your back during sleep until you start using CPAP. It may help reduce the severity a bit.

If you look at my avatar, you can see how long I've been here but when did panic attacks become a 'classic' symptom of apnea? I presume you are talking about something other than awakenings due to events?

Thanks for all of the advice! I am treating the acid reflux now although its only been 4 days since I started and haven't seen any improvement yet. Last night i successfully slept entirely on my side but my wife said I stopped breathing even on my side - felt really horrible today. Tonight I will try the other side and see if that changes anything.

I will give the collar a try (i will try anything). Thanks Julie.

Although my dizziness has become a standard part of my life and is well tolerated, I will give the anti-vertigo meds another go-round. Funny thing is, before my vertigo, I absolutely loved heights - I went skydiving, bungee jumping, you name it. Once this happened, I couldnt even stand next to the railing on my deck (4' off the ground)!

I wouldn't be quick to rule out sleep apnea as at least contributing to some of your symptoms. Apnea does a number on the peripheral and central nervous systems, so it is possible that there is a connection. As for feeling worse, maybe the pressure of 5 is not really enough to stop the apneas, and so you genuinely ARE worse after being at that pressure. If you are able to print out detailed reports from your machine, that would help. Otherwise, try raising the lower pressure a bit. See if that helps. In addition to the other things that have been suggested. Of course, when you get your prescribed machine, try that and let us know how it goes.

I am hopeful that it may help me to be a least a bit more mentally resilient and kickstart recovery. The machine I was using is setup as an APAP with a pressure from 5 to 15 - but I never saw any of the "Pulses" which should appear during my apneas - so not sure if its working right or not. Below is the last of my charts - its seems that all is well but I really cant tell if its doing what its supposed to be doing - although the AHI is much lower than the results from my sleep test. Its not that I stopped because i am impatient - just would rather have a prescribed pressure before proceeding...


http://imgur.com/J5te7B2

Please reorder the graphs so we can see Events, Flow Rate, Pressure, and Leak. We don't need the AHI or Mask Pressure graphs you show here, but we do need Flow Rate and Pressure.

Sure, here is a link to the reordered graph... thanks for looking!

http://imgur.com/gpaQR4Y

Julie wrote:If you look at my avatar, you can see how long I've been here but when did panic attacks become a 'classic' symptom of apnea? I presume you are talking about something other than awakenings due to events?

Pay attention Julie,

http://lmgtfy.com/?q=sleep+apnea+causes+panic+attacks

Dealing with severe anxiety certainly does add a level of challenge in adjusting to CPAP. I've read that sleep apnea causes the release of stress hormones with events, so it seems reasonable that resolving that piece of the puzzle could help calm things down. May not fix it, but if you address the known factors, the hope is that the residual symptoms will present with a clearer picture. I was one with more going on than OSA, and I found that treating my sleep apnea was a pivotal first step in having the wherewithal to begin dealing with all that remained. While I have not had prolonged periods of anxiety, my bit of trouble was enough to make me sympathetic to those with severe troubles. When my apnea was not treated (then not fully treated for a while) and I wasn't getting restful or restorative sleep, it seemed my brain was always so frazzled, sometimes almost in a frantic desperate state. Hopefully therapeutic treatment of your sleep apnea will provide a turnaround for you. To the best of your ability, consistently give your body and brain what it needs to heal and see over time what you're left to deal with.

Is there any chance you're on a med that can cause vertigo as a side effect? I would think as much as you've been checked out that's not likely the case, but throwing it out there just in case. Good luck going forward.