Glossopharengeal Neuralgia - need input from others with this diagnosis

[ultimatelykismet]

Hi, I was just diagnoses with GPN after 2 1/2 months of severe throat/tongue/neck pain.  Initially I had strep throat, which apparently triggered the GPN.  I was treated with 2 rounds of zithromax, a round of augmentin, a round of acyclocvir, and a round of prednisone with little to no results.  Finally, the Ear Nose and Throat Specialist did a simple test of poking me in the back of the throat with a long cotton swab which resulted in horrendous pain, said I had Eagle Syndrome and/or GPN.

Now that I have a true diagnosis of GPN, I am on 900 mg Neurontin (or the generic name Gabapentin).  I haven't seen a lot of pain relief, just end up on a VERY high state of mind all day long.  

Is there anyone else experienced with GPN that can help me?  I don't think the Neurontin is helping and I'm clueless as to what I need to do next.

Thanks

[debie66]

I have had gn for 7 years, I found out that I was deficient in magnesium.  Once I started taking it, my symptions have almost disappeared.

Debie

[faceache]

Hiya!! I've recently been diagnosed with GN after suffering on and off since 2008. I am going through hell at moment with the pain again and on 900m of gabapentin!! Still waiting for referal for scan too!!! Until i changed doctors recently i was told it was TN, but thankfully the new doctor listened and looked into this a bit more!!! Like an idiot i decided to look more into the condition, most of the very little info available said that the drugs get less effective and the pain will increase!! SAY IT AIN'T SO!!!!!!!! Just wondered if anyone else has tried something that worked, even more info on surgery if poss!
Ps ultimatelykismet thankyou for posting your comment about surgery, its something i may have to consider and its good to know i couldpossibly talk to you about x x

[elantra2006]

Hi,

I am familiar with this ailment as I have suffered with it for two years. I started with a sore throat that went away for a brief period then came back. Went to my PCP with the complaint and therefore tried anti-biotics, allergy medication & testing for thyroid. Everything came back normal so I said enough! Send me to an ENT doctor. Upon my first visit, he diagnosed me with nuralgia. I then looked to the Internet for help and low and behold there really was an actual disorder. I had all the symptoms stated. I was put on gabapentin and it worked for nearly a year (did have pain on and off throughout). Then the pain came back and the ENT said there was nothing else he could do for me and sent me to a nerurosurgeon. They wanted to do surgeyry but I wasn't ready so they increased the dosage of the medication and I was good on that for another year (did have pain on and off again). Then the pain was back again with no relief with another increase of medication. They also added tegretol and the combination of medications were making me sick and my quality of life was being interferred with so I opted for the surgery. I had the microvascular decompression done June 2008 and so far so good, no pain. Was stated that the ninth cranial nerve was being compressed by a blood vessel.

Good luck and I hope your brother finds relief.

The doctors told me the surgery was good for at least 15years. I will take what I can get.


MaryAnn

[scpearl]

hello, i saw your note to someone about your problem. it sounds like the same one that i have. please if you get this email me back.

[scpearl]

Hold on, ultimatelykismet  WOW.  The same exact thing that has happened to you has happened to me.  I had strep throat and mono two years ago.  I continued to have pain in the right side of my throat.  I was also told that I had GN until I went to a neurosurgeon who ruled it out by an MRI.  He then sent me to a neurologist who diagnosed me with the Eagle Syndrome.  NOW, I am having trouble even finding a Doctor who has even heard of it.  I have called the Medical University of SC to see if any ENT there has had anyone with it.  The answer was NO.  I called Duke Uni to see if any ENT there has seen anyone there with it.  Again the answer was NO.  At this point I do not know where to turn.  I would love to hear from you.  Write Back. PLEASE

[scpearl]

Hold on, ultimatelykismet  WOW.  The same exact thing that has happened to you has happened to me.  I had strep throat and mono two years ago.  I continued to have pain in the right side of my throat.  I was also told that I had GN until I went to a neurosurgeon who ruled it by an MRI.  He then sent me to a neurologist who diagnosed me with the Eagle Syndrome.  NOW, I am having trouble even finding a Doctor who has even heard of it.  I have called the Medical University of SC to see if any ENT there has had anyone with it.  The answer was NO.  I called Duke Uni to see if any ENT there has seen anyone there with it.  Again the answer was NO.  At this point I do not know where to turn.  I would love to here from you.  Write Back. PLEASE

[luca73]

If you do a TC you will easily see the Eagle Syndrome. Check my profile under "Journals" and you will see my TC where the elongated styloid is very visible. Without a TC you cannot say to have Eagle Syndrome, it can be something else.

[ultimatelykismet]

I've heard this is a very rare condition, but I was really hoping someone else here might be suffering as well....anyone?

[ultimatelykismet]

Thank you so much for your response!

Right now we are still exploring diagnosis...I have a CAT scan scheduled next week to confirm Eagle Syndrome (elongated styloid bone creating pressure on the tendons of the neck and/or glossopharyngeal nerve....in my case, the dr. thinks both the tendons and nerve are affected).  

My dr. and I have discussed the possibility of surgery, but of course I will have to be referred to a Neurosurgeon if that's the road I choose to take.  

My biggest concern right now is the effect of the Neurontin and the possible withdrawl issues if they take me off it.  I really hate to go through that again :(

[Abhijeet Deshmukh, MD]

Hello.

Have you been informed by the doctors about the possible cause behind the glossopharyngeal neuralgia? Some common causes are compression from blood vessels, inflammation as a result of infections, tumors, etc.

I guess in your case, the streptococcal infection was followed by the neuralgia. Even if the infection is treated adequately, we are not sure if the neuralgia was in fact triggered by the streptococcal infection.

Neurontin, though recommended for this condition, may be required in high doses, which have side effects worse than the condition itself.

Have you considered Minimally Invasive surgery? This extract from the University of Pittsburgh site mentions a high rate of success, "....We believe MVD for GN is the most effective treatment for this disorder. Despite the rarity of GN, we have operated upon over 200 patients with throat pain over 80% of whom enjoy immediate excellent relief..."

http://www.neurosurgery.pitt.edu/minc/cranialnerve/disorders/glossopharyngeal_neuralgia.html

Regards

[ultimatelykismet]

Just an addendum - I also take 75 mg of Effexor XR daily for GAD.  In September, I had shoulder surgery to correct a torn labrum and ended up on pain meds for 5 months.  I was tapered off the pain meds slowly, but still had a problem with withdrawls.  I'm worried that coming of the Neurontin might cause the same issues.