hi painintheneck,

I hope you are indeed in remission. While i have had this condition for a relatively short while, i do remember the anxiety assocoiated with the symptoms going away. i amost felt suspicious initially - that i was being lulled into a false sense of security

Once in remission it was hard to believe the condition was really there! my last period of remission was for 5 months and when it started gradually returning, i actally thought it was a throat infection. I'll be more aware now of the patterns.

My previous remission after a relatively short and undiagnosed period of GN was for a year. So certainly long periods of remission seem to be part of the beast - I think i might have read that it might go away for good sometimes, not sure. nothing about it makes sense to me so hopefully it could disappear!

I'm not sure if i have experienced the metallic taste - i remember being convinced, before diagnosis, that it was a horrible infection because of a 'poisonous' (v hard to describe!) taste or sensation in the back of my throat. of course there was no infection there to account for it. The best way i can describe it now that the meds are muffling the worst of the pain is a burning sensaton.

I would also love to hear about any long term remissions.

all the best - I hope you can relax and enjoy the break - which will hopefully be a very long one or for good!

mrs_bennet

Hi, Mrs. Bennet. Sorry I'm so slow getting back to this thread. Busy witht he holidays and all.

I hope your meds have gotten worked out. Today is my second day off meds since August. So far... okay. We'll see. I know what you mean about doctors thinking you're being a drama queen- it's impossible to convince doctors that you're in pain at age 14! I was once sent home from an after-hours clinic with some Motrin and some suckers. Seriously.

I think it's interesting that you have a problem lying on your right hand side. For me, that's the better way to go. IIRC, we both have pain on the left. Quirky.

Maybe you can find some fun non-alcoholic beverages for over Christmas. I have a non-alcoholic wassail recipe if you're interested.

Hey, painintheneck! I'm glad you've found us! My situation was a lot like yours, at first. I've had it 10 years, and wasn't diagnosed for the first five. They also took my tonsils out, hoping to fix the problem. (Though I certainly needed them out, anyway. The ENT said they were rotting. Ew.) I don't think getting them taken out made my pain worse, though.

I have never heard of GN going away for good, though my neurologist did express a hope that I might grow out of it. Until a few months ago, it seemed like I might. I'm almost completely in remission, now, and hope to stay that way for a loooong time. We'll see what happens.

I don't have any strange taste where my pain is, but my pain is more the back of the throat, so I don't associate it with tasting anyway. I have noticed that the whole area of my throat flushes when I have a pain attack. Very odd.

Are you considering MVD? It sounds like yours is definitely from a compression! I've never had an MRI for my GN, only for headaches, and that was several years ago, now. Typically, those documents are kept only 7 years, so I'm sure it's long gone.