I have been having severe, severe neck pain. Pain around ears. Tinnitus. Swelling around face, ja, cheecks, and a feeling like I want to close my eyes. I can really watch t.v. these days. No phone at all. Breathing is occasionally a labor.

My nurse came and was putting on Aspercreme, and I noticed, all of these pains were rising. Why? She talks A LOT. And to be polite, she likes some responses. And she also laughs LOUD, big ol thigh slapping jokes.

So now I've got it. When she's not here, I am quiet as a munk. No movement. Dealing with the pain.


She comes, and I am ruined all over again.

What do you guys suggest?

hmm sounds like you are tensing up to tolerate her loudness??

Maybe ask for quiet, soft voice?
or pretend to be asleep?
get some ear plugs to use when she is there- and if she asks why, say your hearing has been very sensitive to a lot of sounds and it makes you tense up?

When I have these symptoms (numb head, headache, tinnitis), and when any flare-up is happening, my voice changes and it hurts to talk. The more I talk, the more I lose my voice! It feels like a constriction around my neck as well as an inability to take a deep breath. Listening to talking isn't painful but trying to process the thoughts in my head IS painful.

hope this is subsiding for you soon,
Anne

Yes, I agree and thank you for both.

I have to correct that during these times I CAN'T watch t.v. because even the lightest sound bothers me.

It reminds me of my old migraines, but now it's much worse and IF I talk in response, being polite and courteous by always concurring in some way or responding with my requested opinion, by the end of the day I am just EXHAUSTED and using an ice pack.

I think I need to be really assertive (and I'm not good at this) and just explain that TOS affects these body parts and that ANY inflammation limits their use.

I re-read our "Aide Guidelines" and it's right there, to limit conversation due to swelling jaws and tinnitus ears...

and for the voice thing - i still have problems with mine too.
can't sing more that 2-3 songs before it gets all scratchy and weak, and can't yell as loud as I used to
if I talk a lot my throat gets scratchy and dry feeling

these get the worse when my neck muscles get tightened up

Maybe make/get a sign that says "Please limit talking"
or "QUIET PLEASE"

I still think the ear plugs would be a cue to her without having to say too much to her, maybe....
have them in when she arrives -and just point to your ears and make a grimace and maybe show her that portion of the Aide Guidelines....
maybe she would get the hint then??