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Hearing Disorders Message Board


Hearing Disorders Board Index


Finally -- an answer to all this weird poppety-pop-pop-pop junk my ears have been putting me thru the last 2 years. But no cure? Not many treatment options? You've gotta be kidding me. There are too many of us suffering for there not to at least be better treatment options. My ENT said I need an ET transplant, but is otherwise unable to help me. Gee, was [i]that[/i] even helpful?

Short of going completely cookoo from the constant autophony and swooshing and breathing and heartbeat sounds going on in my head, I'm setting out to find ways to make it better. I've read quite a bit on these boards, I hear everyone's frustrations, so I know I'm not alone. This disorder has brought me to my knees in tears on more than one occasion.

So this is the deal. If anybody has any "fail safe" methods thru personal experience that make this thing any better, I'm all ears. Yes, I really did have to say that.

[b]Personal Experiment #1:[/b] This week I have set out to completely avoid the diuretic TEA. I'm from the south, love my iced tea, and drink a lot of it. So far, I've gone without it for one whole day and guess what? No PET problems. Do I think the two are related? Too soon to tell. Normally, I can go days and days and days and get absolutely no relief from PET, making me inch up the walls little by little. Then suddenly, I get an entire day -- 24 whole hours! -- with no PET whatsoever. Anybody else experience this?

It might be interesting to note that I've also got MS, and I've read that sometimes the two can go together due to muscle weakness. Anybody else have any neurological and/or muscle diseases? If so, please share. Maybe we can figure this out by piecing things together. It's worth a shot. ;)
Tigersaint:

I was looking back over your older postings, and in March 2007 you said that your allergist took some blood, did some tests, and determined that you might have Common Variable Immune Deficiency (CVID).

But you never said whether or not you tried treating it, or what the results were? Did you actually have CVID? Did the treatment help with your Eustachian Tube problems at all?

Thanks!

Cami
[QUOTE=answersplease;3814772]Tigersaint:

I was looking back over your older postings, and in March 2007 you said that your allergist took some blood, did some tests, and determined that you might have Common Variable Immune Deficiency (CVID).

But you never said whether or not you tried treating it, or what the results were? Did you actually have CVID? Did the treatment help with your Eustachian Tube problems at all?

Thanks!

Cami[/QUOTE]

Hi Cami-- Sorry for the slow response; haven't checked in in about a week... Yes, i did post almost two years ago that i was going to an allergist and she thought i might have CVID- but it turns out that i didn't. Even though it would've explained my symptoms, i was very relieved to find out that i didn't have it since the treatment involves being connected to an IV machine 3 or 4 times a week- which would seem to interfere with normal life even more than PET(!) My PET (or what i think is PET) has continued to be a problem, but on the bad days i try to focus on the positive things that i do have , like relatively good health, instead of the negatives that go along with PET-- as trite as that might sound. But if you, or anyone here, thinks that your immune system might be compromised- then by all means get tested for CVID; there's lots of info on it on the web, but a couple things i remember learning aboout it was that it is congenital (you are born with it) and people who have it usually have a lot of ear problems as young children (i had tubes 3 times, which is one reason the Dr. thought i might have it.) Good luck!

Jason
[QUOTE=tigersaint;3820776]Hi Cami-- Sorry for the slow response; haven't checked in in about a week... Yes, i did post almost two years ago that i was going to an allergist and she thought i might have CVID- but it turns out that i didn't. Even though it would've explained my symptoms, i was very relieved to find out that i didn't have it since the treatment involves being connected to an IV machine 3 or 4 times a week- which would seem to interfere with normal life even more than PET(!) My PET (or what i think is PET) has continued to be a problem, but on the bad days i try to focus on the positive things that i do have , like relatively good health, instead of the negatives that go along with PET-- as trite as that might sound. But if you, or anyone here, thinks that your immune system might be compromised- then by all means get tested for CVID; there's lots of info on it on the web, but a couple things i remember learning aboout it was that it is congenital (you are born with it) and people who have it usually have a lot of ear problems as young children (i had tubes 3 times, which is one reason the Dr. thought i might have it.) Good luck!

Jason[/QUOTE]

Jason,

Thanks so much for following up.
I had some blood tests done by an endocrinologist, and everything checked out fine, so I don't think I've got any issues with my immune system. That IV deal does sounds horrible too!

Cami





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