New to GPN

In June I started with a sore throat that just wouldn't go away. I saw my regular doctor a couple of times over the summer who said it appeared that I had inflamed tonsil tissue that was left behind from a tonsillectomy when I was 10 (I'm 52 now). This persistent sore throat went on all summer. Finally in September I was referred to an ENT, who suggested removing the remaining tonsil tissue. I had that done at the beginning of October. (It was not fun.) I complained at my post op visit that the right side of my throat was still sore and I thought it was not healing as it should be. He said it was normal and to give it more time. 4 more weeks passed by and everything is right back to where it was before my surgery. (Sore throat on the right side, only when I swallow saliva. I can eat and drink without pain. I also have a dull ache in my right ear most of the time.) After another appointment with the ENT last week, I have been diagnosed with GPN.

I'm now in the process of researching GPN to find out more about it and what will be the best way for me to manage the symptoms, which is what led me to this site.

For the most part I do not have the sharp intense pain that many here describe. My pain is more of a constant dull ache on one side of my throat which worsens for a second or two when I swallow. It's usually not bad at all in the morning, but by late afternoon/evening it's pretty painful. Some days are worse than others, but I haven't had a single day without pain of some degree.

The ENT assured me that the tonsil tissue did need to be removed and perhaps the inflammation from that was putting pressure on the nerve, so for now I've opted to take a wait and see approach and hope that everything goes back to normal on its own. In the mean time, I'm looking into a holistic approach to manage the, massage, and maybe acupuncture. Drugs are just not an option for me at this point, as the side effects seem worse to me than the sore throat/earache.

I'm curious if there is anyone here who is experiencing similar symptoms to what I have and what kind of treatments you have tried.

You issue seems troubling but not excruciating. Still, drugs in the appropriate low dose may not affect you like the high doses I tried. My pain was so severe I was willing to try meds, before having my MVD. It was a bit weird feeling but not bad. They just didn’t work.

I’d give it a try if the other measures proved inadequate.

law suit SUE YOUR ENT

Yes, Vicdoc, judging by some of the posts that I have read here, I am one of the lucky ones. Things can always be worse no matter what your situation is, so I'm trying to stay optimistic. I haven't ruled drugs out, but I do want to try some other things first. My ENT approved of that decision and if things get worse or it's not better by March then I will consider some of the other options. (I'm really hoping that it will just go away on its own!)

Hurts so much,

I don't believe that any of this is my ENT's fault. My primary care doctor saw inflamed tonsil tissue that needed to be removed and referred me to the ENT. The ENT agreed that the tonsil tissue needed to be removed. They both thought that was the cause of the pain and I agreed to the surgery. It just so happened that we were all wrong. Suing won't change anything and it certainly won't make the neuralgia go away.

I suspect this is one of those issues where we often are chasing a moving target. I had thought I had post-nasal drip periodically, which is why I have no idea when things may really have started with me. I just ignored it. What sent me to the doctor was my "it hurts when I inhale" pain - that is a really sharp pain, much different than the mild sore throat feeling I have often. (Though not all the time.) Most of my pain seems centered in my ear (left side for me), which is why I assumed it was TMJ. I was diagnosed with that decades ago, just sort of learned to deal with it. I finally decided one last try to fix that (tmj, that is) in July, after I was dx'd with Atypical Facial Pain (I didn't notice a throat component when I first saw the neurologist, which is why he didn't peg it as GPN) and after much time and both the TMJ doc and the TMJ physical therapist saying "You should be noticing SOME improvement by now" - and the fact that the panoramic x-ray showed my right (not very painful) side more out of alignment than the left, it finally dawned on me that most of that pain was NOT tmj.

Then I started getting the sharp pain when I swallowed sometimes between my throat and ear, as well as when I breath. I called, and the neuro changed my meds to Tegretol. (I haven't seen him since April, and on the phone, haven't been officially told GPN, but based on my symptoms and the fact that he prescribed Tegretol - and it helps some - I put 2 and 2 together. Tegretol doesn't help most neuralgias, but does Trigeminal and glossopharyngeal.)

I'm not where I want to be yet. He had me wean off the gabapentin I started on in April, and I think I probably needed it. Right now, I'm on Tegretol and Cymbalta (antidepressant - I realized I was exhibiting some of the mild symptoms of depression - that also helps with pain.) I just started the Cymbalta, though, and it takes time to build up, so I won't know if it really is helping for a while.

Definitely see what can be done pharmacologically. Usually, anti-seizure meds are what helps.

Hi Suzymc44, I haven't the zaps of pain people talk about with GPN - I have a dull ache ALL of the time that gets worse when I swallow food or when I drink citrus drinks/alcohol etc. The pain increases sometimes and can last days or weeks and then goes back to the "dull ache". Sounds exactly like yours. And I agree, it's not about what ENTs/specialists do or don't do - they unfortunately are treating an invisible illness even though they are ENTs. It has taken 4 years 20 MRIs and a throat-tongue biopsy surgery to figure out I had GPN and only because I found an ACTUAL GPN specialist in London.

My advice: From the off, take CONTROL. Don't be afraid to INSIST on being sent to GPN specialist in your area and if your Doctor doesn't know of one, get on forums and find people that do!!!

MOF, I thought the same as you when all this started for nasal drip! It was in June and at the time when my seasonal allergies usually kick in, so I ignored it for the most part. When allergy meds didn't make a difference, I saw the doctor.

grandadam, Thank you for your reply! It does sound like we have very similar symptoms and knowing that is (in a strange way) some comfort. All of this is still very new for me. I'm keeping a journal to try and figure out what triggers episodes and what helps and what doesn't. There is a lot to learn...

The more I read here, the more I see that I am very fortunate. I have good doctors and was diagnosed quickly compared to so many that have been told their pain wasn't real or have had to go through numerous MRIs and years of testing before being diagnosed.