cjtheone88 wrote:

MaryS wrote:
Well, I do have a significant nasal valve collapse on the right, with both the internal and external collapsed. In fact it has been this way to some extent since the surgery, just worse now. The left may have a valve collapse as well, I do feel my nose pinch. BUT, at the same time, my "lower nose" as I call it is open and air can penetrate to the back and up a bit. I just can't figure out the sensation. Well, air goes in my lungs at any rate. So, I know something happens.

So, I think my upper nose and valve collapse make it hard to breath, but there is a large open feeling in other ways. I don't mind breathing to my upper lung with this arrangement, so long as I can breathe through my nose. But that is not always the case. I am convinced that things are still changing. Just don't know for the better or worse.

I have pulled my face and nose every which way to "fix" it. Using nasal cones, breathe  right strips, just sitting holding my face, etc. Sometimes it works and sometimes not. It is like shifting sands as I describe it.

Just when I think I have a "routine" figured out, things change. I just want a little bit of reliability. Sometimes I use the saline, it clears me, sometimes not; sometimes the cool mist helps, other times not, or makes it worse. The oils and bacitracin, same thing - sometimes they help a lot in opening my up in a better way.

Sometimes when I am really dry  my nose feels like it is shriveled ( it hurts) in the AM sometimes, I get an artificial resistance because my nose is so narrow. This makes me happy, because I can "breathe". But, the tightness and pain in tissues when the air hits them is not great.

I have been able to sleep (though fitfully) for the last few months, but now I feel that my nose is not cooperating. Breathing through my nose while sleeping is paramount.

I guess my DR's advice not to intervene with the nasal valves is the correct way to go?  I wonder how an ENS specialist can evaluate me when I am so messed up in other ways.

I feel frustrated because I can't describe it as I want to .

PS I do think that the moisturizing helps with sensation, I do think that parts of my nose feel more than they did, just not the "lower nose" or that weird space where air travels over the turbinate. I guess that is what I am not feeling?



 

Again, this sounds exactly like what happened to me. I literally bought hundreds of breath right strips and tried every single configuration possible. Just when I find a small solution, it totally changed and got worse again. I spent like 6 months in front of a mirror pulling the skin of my nasal valves every which way, I tried cutips, breath right strips, even fricken tape. Nothing worked for me. To me, I believe ENS is more neurological in the aspect of breathing. The turbinates sense the air we breathe, then calm our body down. Damaged turbinates cant do this. Therefore, our bodies arent registering the correct amount of air and hence we get suffocation. When I finally came down to this realization that it was neurogical and in fact the turbinates are actually part of the trigimenal nervious system, I went onto the pain meds. Once I got onto the pain patches, I stopped looking at my nose in the mirror totally. Now I dont think about my nose. I know everyone says and people have even told me all the time "stop thinking about your nose," but really its impossible when you have ENS. I literally couldnt stop thinking about my nose at all, but finally with the pain patches Im much better off now.

 

thanks for writing. I wish for just one minute my doctors could live with this. They would be doing the same thing. It is natural, normal human behavior. It is hard to stop thinking about it, because it is always changing, and it is my reaction to want to adjust accordingly.

I may end up on pain meds or something. But, I don't want to. I have a hard time functioning on medication - most recently tried some meds in Jan/Feb. But, without medication, at least I have my mind and it is clear. When drugs impair my memory and give me depersonalization/derealziation feelings, as they seem to, I experience yet another source of 'losing control" anxiety. So, it is something I would like to put off if ONLY I can just squeak by and sleep, somewhat, while breathing through my nose.

Strangely,  people are surprised when I tell them of the dryness, the pain and the fact that I lost my sense of smell. They believe that these things in and of themselves are sufficient to make a person depressed/anxious etc. Well, I say, that just goes to show you how HORRIBLE and all consuming the breathing issues are.....