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[Symptoms] 18 months and still no solution
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retired_guy Offline

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Post: #11
RE: 18 months and still no solution
You have sleep apnea that is not being treated. But it sounds like you're not going to be able to do that until the other issues are resolved, namely the headache situations.

I used to have headaches like that. Really bad sometimes, then not so much for awhile. In my case it was caused by taking aspirin. I'd get a headache, take aspirin to try to make it better, eventually it would get better, then I'd take more aspirin. I got rid of my headaches when I quit taking aspirin.

But the reason I quit taking aspirin is it finally got to the point that when I took it, I bleed out. So I decided I'd rather not do that and quit taking it. Headaches went away.

My only point in sharing this with you is you need to explore something so stupidly simply, like aspirin, or a food allergy to wheat, or who knows what. Something stupidly simple because that would explain why the docs can't figure it out. In your case, from what you've said, I'd bet on the wheat thing. I'd bet, not knowing anything about you really, that you need to try a gluten free menu for a short while and see what happens.

Then, if you can get that solved, we can discuss your sleep apnea. Because you do still have that.
04-27-2014 10:27 PM
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Brian Schulz Offline

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Post: #12
RE: 18 months and still no solution
(04-27-2014 10:27 PM)retired_guy Wrote:  You have sleep apnea that is not being treated. But it sounds like you're not going to be able to do that until the other issues are resolved, namely the headache situations.

I used to have headaches like that. Really bad sometimes, then not so much for awhile. In my case it was caused by taking aspirin. I'd get a headache, take aspirin to try to make it better, eventually it would get better, then I'd take more aspirin. I got rid of my headaches when I quit taking aspirin.

But the reason I quit taking aspirin is it finally got to the point that when I took it, I bleed out. So I decided I'd rather not do that and quit taking it. Headaches went away.

My only point in sharing this with you is you need to explore something so stupidly simply, like aspirin, or a food allergy to wheat, or who knows what. Something stupidly simple because that would explain why the docs can't figure it out. In your case, from what you've said, I'd bet on the wheat thing. I'd bet, not knowing anything about you really, that you need to try a gluten free menu for a short while and see what happens.

Then, if you can get that solved, we can discuss your sleep apnea. Because you do still have that.

I have had allergy tests, twice whilst under a dietitian, one of the many people I have been referred to. The headaches have all but gone since having the Somnodent dental device. What I have is a congested head like a hangover making every day activities difficult because it is coupled with co-ordination and concentration problems which become worse when I try to use my brain. Doing my Business Activity Statement yesterday proved difficult concentrating on the numbers and by the end I was so lousy and even had blurred vision. This is the symptom I first complained about 18 months ago and it still exists. The last sleep study I had on 6/5/2013 done by Dr Stephen Morrison Thoracic and Sleep Physician for my specialist Dr Richard Nankervis was down to moderate obstructive hypopnoea with the recommendation to avoid supine sleep and consider use of oral appliance. Dr Nankervis already had identified the positional sleep problem from my first sleep study which was severe OSA and we had adopted the tennis balls which probably contributed to dropping to moderate because I was getting used to not sleeping on my back. Dr Nankervis gave me referral for the dental appliance but when I came back from Europe he had left and I had a new specialist. Had I followed up then I may be in a better situation now. Whilst on CPAP 12 months 90% of the time was under 4 hours a night with the average 3.6. On the dental appliance my average is approaching 7 hours with no headaches in the morning. I do not take asprin because of bleeding issues but I am prescribed zydol for pain for an injury received in Vietnam in 1966 and celebrex for my crook knees. I stopped taking zydol to see if it was causing these lousy head in the day because I have been on them for years but my Doctor doubted they were the cause. I spoke to my Doctor last week and we are going over all these issues on 8 May before I see my specialist on 9 May where I will request another sleep test with the dental appliance. The dental appliance is adjusted slowly to give the jaw time to adapt so I have another week to go on adjustments and then let it settle down. This is only 1/10 of the available adjustment but my friend who has the appliance for over a year said to take it slowly. I am actively involved in my treatment and sometimes very vocal but if I do not push the issue I will not reach the outcome I expect.
Brian
04-28-2014 05:13 AM
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robysue Offline
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Post: #13
RE: 18 months and still no solution
(04-28-2014 05:13 AM)Brian Schulz Wrote:  
(04-27-2014 10:27 PM)retired_guy Wrote:  You have sleep apnea that is not being treated. But it sounds like you're not going to be able to do that until the other issues are resolved, namely the headache situations.

I have had allergy tests, twice whilst under a dietitian, one of the many people I have been referred to. The headaches have all but gone since having the Somnodent dental device.
...
What I have is a congested head like a hangover making every day activities difficult because it is coupled with co-ordination and concentration problems which become worse when I try to use my brain.
...
This is the symptom I first complained about 18 months ago and it still exists. The last sleep study I had on 6/5/2013 done by Dr Stephen Morrison Thoracic and Sleep Physician for my specialist Dr Richard Nankervis was down to moderate obstructive hypopnoea with the recommendation to avoid supine sleep and consider use of oral appliance.
...
I spoke to my Doctor last week and we are going over all these issues on 8 May before I see my specialist on 9 May where I will request another sleep test with the dental appliance. The dental appliance is adjusted slowly to give the jaw time to adapt so I have another week to go on adjustments and then let it settle down. This is only 1/10 of the available adjustment but my friend who has the appliance for over a year said to take it slowly.
Until a sleep test with the dental appliance is done, there's no good way of determining how effectively it is treating your OSA. So it's GOOD that you plan on requesting another sleep test with the oral appliance in place.

If the sleep test shows the oral appliance is controlling your apnea, then other causes of the congestion/headache problem will need to be looked into. You may need a referral to a neurologist who specializes in head and facial pain in addition to an ENT who looks at the sinuses and ear and not much else.

If the sleep test shows the oral appliance is NOT controlling the apnea, then you know undertreated OSA is likely the cause of your headaches. And you and your sleep doc are going to need to figure out where to go from here. One thing to do is to try to continue advancing the adjustments on the OA for several more weeks or months (it does need to be done very slowly), and then do another sleep test with the OA in place (with its new settings) after several more months of using the OA. Another approach may be to combine the OA and a PAP at a (much) lower pressure than your previous titrated pressure. For some people, it is easier to sleep with the combo of oral appliance + CPAP because it allows the PAP to be run at much lower pressures.

Quote:What I have is a congested head like a hangover making every day activities difficult because it is coupled with co-ordination and concentration problems which become worse when I try to use my brain.
I know you're thinking this is different than a "headache", but the thing is there's more going on here than simple sinus congestion. And a lot of headaches can mimic a traditional sinus headache, including my nemesis: chronic (daily) migraines.

The coordination and concentration problems also seem to point to something different from a traditional nasal allergy based sinus headache. Coordination problems point toward possible inner ear problems OR neurological problems OR both. Hence referrals to both an ENT and a neurologist specializing in head pain may be in order.

Quote:On the dental appliance my average is approaching 7 hours with no headaches in the morning. I do not take asprin because of bleeding issues but I am prescribed zydol for pain for an injury received in Vietnam in 1966 and celebrex for my crook knees. I stopped taking zydol to see if it was causing these lousy head in the day because I have been on them for years but my Doctor doubted they were the cause.
One more idea occurs to me: What is the timing of the headaches relative to the dosing of the pain meds? Do the headaches kick shortly before you are due for a dose of one or both of the pain meds? If so, another possibility that will need to be looked at is so-called rebound headaches. And in that case you're going to need to work with a doc who's got some experience with managing chronic pain in the presence of rebound headaches, which is can be a delicate balancing act.
(This post was last modified: 04-28-2014 09:13 AM by robysue.)
04-28-2014 08:57 AM
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retired_guy Offline

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Post: #14
RE: 18 months and still no solution
(04-28-2014 05:13 AM)Brian Schulz Wrote:  I have had allergy tests, twice

Good to know. I've not heard that gluten problems were being identified by actual allergy testing, but I'm sure not an expert in that area.

Mr. Google might be though, and here is a list of 10 symptoms that might be attributed to gluten intolerance.

http://www.mindbodygreen.com/0-7482/10-s...erant.html

#'s 3, 5, 7, 8 and 10 sound like a match for you.
04-28-2014 10:47 AM
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