Why does the pain come and go?

Hi -

I am so puzzled by this condition. Friday I had almost no pain (am not back on my meds - after a relapse in May), Saturday I had pain of about a 2 - 3, and then Sunday no pain at all. What gives?? If the theory behind this is that the 9th cranial nerve is possibly touching a blood vessel, why would the pain not be there all of the time and at about the same intensity? Don't get me wrong....loving the pain-free days for sure, but just baffled by it.

Had a totally "normal" CATscan and MRI with and without contrast last year, and the neurologist told me it is an irritated cranial nerve. Go figure!

Be well, Kara

Anyone having/or had similar symptoms and any input? Have any of your doctors told you why the pain comes and goes?

Hi Kara,
For me, I know that lack of sleep, a bad sinus or head cold/flu and stress are triggers. I’ve only had a simple MRI, but after reading some of the advice/comments, I will be exploring more of the other types of scans etc & also see if I can even consult some of the recommended Drs.
Like you, I love the pain free periods, but would also love to see if there’s a longer term cure, remission or whatever they’d like to call it.
Best advice I can give you, is to learn to listen to your body, and you will hopefully soon be able to identify your triggers, and this may assist you in reducing the episodes of pain.
Above all, keep smiling!

Hi Pili ~

Thanks for replying. It is so great to have found a website like this. I really appreciate the support.

When this started out last year, I remember having a cold....so maybe that triggered it the first time? After suffering for 6-7 months last year, it vanished! I thought it was gone for good :( Anyways, not sure what triggered it this time.

I do remember while I was back East with my husband two weeks ago on vacation I did not have pain. Then coming back, driving to the airport, we thought we were going to miss the flight - and I was stressed - and it started again.

By additional tests, are you speaking of an MRA or what? Are there other types of tests besides that?

I have heard of a doc at UCSD that performs the surgery...I live in San Diego County. Maybe I will look him up.

And yes, despite this, I am still smiling!

Thanks, Kara

I suffered for almost 10 years with periods of remission and wondered the same thing. My theory is that the nerve (outer covering) tries so hard to repair itself and succeeds but then succumbs to the constant pushing by the vessel.

I finally got the MVD surgery. Woke up pain free and have been that way for almost 5 years. Unbelieveable...I went from this hideous nerve pain to absolutely no pain.

I would tell anyone to get the surgery..

Thanks Steve!

I too wonder the same thing. I started out 7 plus years ago with once a year GPN pain and eventually it turned into every few months to every month to daily now. It took 7 plus years for it to get to daily all the time pain though. I also had Eagle Syndrome surgery (not my problem by the way) and I had remission for one entire year due to the 9th and 10th being manipulated so much during surgery! So, to answer your question, I can't. But, I too wonder the same darned thing.

Thanks Billie!

Funny, I seem to have gotten it every summer now for three years, periods of remission and now it's back. It affected my swallowing a bit the other day so I went to the doc and she said it makes sense since it is messing with the glosso nerve. Swallowing has gotten better, and I am now back on Neurontin full time, which helps. Five a day/300 mg.

She also said, after another physical, that she saw no "red flags" for anything else so I guess it is GPN.

By the way, are you considering surgery for MVD?

Wishing you a pain free day - Kara

Hi Kara, your very welcome!!!

I take 6oo mg of neurontin 5 times a day now!!! It makes me crazy and high and the double vision is horrible! But, it takes the zapping away and just leaves pain. I am having MVD/resectioning done by Dr. Michael Brisman on Long Island, NY. Right now, I am having the fiesta MRI done and then waiting for the insurance to approve the surgery. I have lived with this for over 7 years now. The first thing Dr. Brisman said to me is "why did you wait so long?" I actually had a styloidectomy done 2 years ago thinking it was hitting the 9th cranial nerve, well, that surgery was a huge botch if ever there was one!

The Dr. went externally due to my having my tonsils still, he could not get to the styloid, so he went orally and did a puncture to the tip of the styloid. I awoke after 4 hours to surgical induced bells palsy to the affected side which lasted over 3 months. I now have permanant loss of vision and hearing on that side. (I wear one contact lens)! The surgery was for nothing, but we had no idea at the time!

Anyway, sorry so long. Yes, I am having surgery finally and I am fearful but excited at the same time. If that makes sense!!??!! I am glad you're feeling better and if you need someone I am here for ya. Take care, Billie

Mine started 6 years ago, went away after maybe 6 months, and it has come back for no reason every couple of years, lasting months each time. I hate it, it ruins my life. Right now it can be extreme, its been cooking for 3 months… but I found out today in my desperate search for relief that naproxen brought the pain down a couple of notches. I otherwise take lyrica, I’m not sure that it does a thing, nor does the topical lidocaine. I am going to see a neurologist at Duke soon, if this doesn’t get better I will seriously consider MVD. Has anyone else wondered “why me?”. I hope that yours remains quiet, goes away… I wouldn’t wish this on anyone… :frowning: