My Glossopharyngeal Neuralgia

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I went to the neurologist yesterday to go the reading from my scan. I went into the appointment with the mentality that if there was absolutely nothing on my scan, I was going to go crazy. Probably cry, maybe scream. I needed answers.

He came into the room smiling, “Well it’s all good news for you on these scans! No tumors or masses, everything is clear!”

“All clear?”

“Yeah!”

“Completely clear? Like… you found nothing at all?”

“No. Nothing. But that’s a good thing. If we saw anything, that would be a bad thing.”

So we went on to talk about how he is sticking with the diagnosis even though there is no visual proof. At this point, the only way to get proof of the xenical coupon likely little artery wrapped around my ninth cranial nerve would be to cut my skull open. We both agree that route would be a tad extreme.

I didn’t cry or scream. I only said, “Listen, if there is no proof, I need you to tell me why you know that’s what this is. Convince me!” And he did.

I’m only slightly frustrated. Mostly I’m relieved. After losing a friend to cancer, it no longer seems too far-fetched that you yourself may also have cancer. So I am thankful for that. I’m thankful that he is absolutely positive that I have a glossopharyngeal neuralgia and he didn’t leave me with any well-it-could-be-this’s or it’s-possibly-that’s.

I’m resting in the knowledge that this is what I have and it is not killing me. It is hurting me, but only during the episodes, not long-term.

I’m going to stay off preventative meds for as long as possible. They are anti-seizure drugs and I hear they have lots of side effects. Plus, I don’t really like the idea of being on drugs forever. I’ll put it off until it gets worse. In the meantime, I’ll be praying that it doesn’t ever get worse.

So yay for no brain cancer! High fives all around! Whoo hoo!

9 Responses to My Glossopharyngeal Neuralgia

  1. Lauren June 21, 2012 at 1:46 pm #

    Yay for no brain cancer! Yay for a confident doctor and a confident diagnosis! I’ll be praying for you, too, that it doesn’t get any worse :)

  2. Alice (aka Nana) June 21, 2012 at 2:04 pm #

    God gave me peace about this…..I never thought it could be fatal and am so grateful the tests proved that. When you have children it is hard to stay calm when “something is up” so I am thankful HE placed HIS hand on my nervous system!! Hugs!!

  3. Dave June 22, 2012 at 8:56 pm #

    Found you blog since I also have Glossopharyngeal Neuralgia. Your story struck a chord with me. My ENT also said it was tonsilitis. Took them out and obviously no relief. MRI shows nothing “abnormal” so I’m on meds. Email me if you have any questions.

  4. Armando June 27, 2012 at 6:33 pm #

    Your courage is admirable!

    I’d like to share your story to LivingWithGPN.org, one of our community sites, to provide them with inspiration and solace.

    You may find the help and support GPN sufferers share in this community to be very heartwarming and I would like to invite you in it as well. The link is http://www.livingwithgpn.org.

    Our group, BensFriends.org, build patient support communities for rare diseases such as Glossopharyngeal Neuralgia and dozens of others.

    Please see our mission statement on the website http://www.bensfriends,org.

  5. bjf June 28, 2012 at 2:02 pm #

    To Chelsea:
    My husband was diagnosed with GPN almost 30 years ago. He’s been on Tegratol (generic mostly) 2- 200mg 2 times a dayy for almost that long. Just have your Tegratol (generic) levels checked yearly by a Neurologist who knows what they should be. It’s not a cure, but it’s a help. Sometimes if the headaches especially rough just take an extra 200 mg to boost up the level. Check with your doctor/neurologist to see his idea.
    Stress makes them much worse.

    We would like to know if anyone has tried Botox successfully? How do you find a doctor to administer the Botox treatments?
    Thanks

  6. Kara June 28, 2012 at 2:41 pm #

    Thanks for sharing, Chelsea. So glad it’s not cancer.
    I was in your exact same boat about a year ago. Could not believe it was not something horrible that was causing my extreme pain. Nothing suspicious on my CATscan or MRI w/ contrast. Living with mild neuralgia, but thank God above that it isn’t something more sinister.

    Have a great day!

    Kara

  7. Andrea June 28, 2012 at 7:20 pm #

    Hooray for no cancer! I have the same diagnosis as you but 6 months down the track, and made the same decisions you have. It’s not too bad. About once a month I go for drugs, but the rest of the time I just decided to recalibrate what was ‘normal’ to include what I used to think of as an ear ache. Pragmatism works amazingly well!
    I’ve tried the drugs, and my goodness they have side effects. Play around until you find an occasional one which works for you – I take codeine. Tegretol is also an ADHD medication and it left me like a zombie, but it works for some.
    Good luck and well done!

  8. Theresa Pasqualetto June 29, 2012 at 9:34 pm #

    Two summers ago, I was “diagnosed” with GPN. They put me on anti-seizure stuff..which just knocked me out..and called me fixed. I did not accept that..The only time I had the pain was when I had ear infections. All this being said is to tell people not to just accept a diagnosis…two ENT’s have undiagnosed me

  9. Ashley October 11, 2012 at 3:11 am #

    I had to take a moment to come back and comment on this post. I was reading about glossopharyngeal neuralgia for med school and couldn’t help thinking, ” Wait a minute. Haven’t I heard of this before…”

    Thank goodness for the search engine on your blog. Sorry, I don’t really have anything constructive to say. But thank you for giving me some personal insight on what glossopharyngeal neuralgia means outside my textbooks!

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