Glossopharyngeal Neuralgia- What are your symptoms?

[tam1988]

My husband has what we think is a form of Glossopharyngeal Neuralgia.  It started after using an inhaled steroid to treat eosinophilic esophagitis.  That was nearly 2 years ago.

I'm noticing that with this disorder people have "pain".  He doesn't have "pain".  It's a hypersensitivity that gets in the way of his eating, swallowing (sometimes having esophageal spasms) and general just "being".    He's in horrible shape due to it.  Do these symptoms fall under this diagnosis?

[sims8872]

I had similar problems after a tonsillectomy. I started developing the same exact symptoms almost a week after I have my tonsils removed. I had pain in my left ear pressure from the collar bone up to the left ear which was also a feeling in the throat as something or stuck there. I also would wake up in the middle of the night feeling like my throat closed and I couldn't breathe and I went in what I would call a panic attack because it felt literally like I couldn't breathe we've it resolved after three minutes. I went to the hospital when this first started and no hospital could find anything wrong so I reported back to my ENT she said to go see GI and I had an endoscopy to see if I had reflux. They started me on a round of medication for reflux which did not help end I finally have my endoscopy done which revealed nothing. I finally went and seen another ent which was my fifth ent lady dr. DeDona of Calvert County in Maryland believed that my symptoms fit Eagle syndrome which is an elongation of the styloid process. I received X-rays and a CAT scan that showed that I did have it. Ing job at John Hopkins to find a surgeon which they were Clueless on everything and I ended up back at my ENT with no surgery yet. Dr. DeDona ended up retiring so I moved to doctor tutor which did my surgery not too long ago. I am still recovering from my surgery but am now starting to be able to eat again. I believe that a nerve may have been damaged also in surgery when I had my tonsils taken out and that possibly could be giving me the numbing sensation in the back of my throat.

[sims8872]

Sorry for the misspelling autocorrect keeps taking everything in different direction. This is really scary stuff as you said your husband thought about suicide which creeps me out because that's exactly how I felt a couple times when they begin. I started taking when this started Benadryl and blue Tylenol liquid form to help me sleep at night. If any doctors are reading this please believe your patient and please believe that they are at their limits and have thought about suicide. I have never had reflux of any kind until after I had my tonsillectomy and I had elongation of the styloid process shortly after. I believe it's possible that also the glossopharyngeal nerve may have been damaged during surgery and could be causing these symptoms along with the elongation the styloid process.

[3dcoupon]

I have been diagnosed with Glossapharyngeal Neuralgia.  Pain located in the back of the tongue on the right.  Ran the gamut of prescriptions with minimal relief.  In desperation I found a holistic approach.  A gentleman trained in European Medicine.  This required colonics, colon cleaning three consecutive treatments.  A diet containing no white products, potatoes, pasta, rice, cheese, milk....  Then two supplements, Sphingolin and Serraflazyme, one an anti-inflammatory, the other for nerve pain.  The supplements have brought my pain scale down to .5 and up only as high as 2.0.  The most pain relief of all treatments.  Don't be afraid to try a new approach.  If what you have been doing isn't providing enough relief, why not try a new approach?

[Dr Rajgopal]

Hi Tam,
It could be Mucositis. I suspected the possibility so I asked you to consult an oral surgeon. Certain medications, chemicals, toxins or substances may possibly be underlying causes of Mucositis. Side effects of medications, or exposure to toxins, chemicals, or other substances may cause the symptom. Treatment consists of Antiseptic mouth wash, Fluids, Antibiotics, Anti fungals and Topical anaesthetics. Hope this helps you. Take care!

[tam1988]

One more thing...would it be fruitful for us to research treatment methods for Mucositis?  Could this be a form of chronic Mucositis??

Thank you again.

[tam1988]

Thank you again.  We've seen an oral surgeon and he said it's "further back" into the throat than is in his realm of work.  He said to go back to the ENT.  We've seen eight ENT's already.  Several locals and two from two different Universities.  Johns Hopkins and Wake Forest.

They ruled out viral because it appears to be a chronic condition and the redness in his throat is mild (they say normally viruses peak quickly).  They don't seem to think it's bacterial as he's not responded to any of the many antibiotics they've tried (speaking of which we've had to ask and nearly beg for at times to try).  Unless the bacteria is a communal bacteria that the antibiotics don't address...possibly that is the issue?

We need someone to help us figure this out.  When we went to Johns Hopkins in Maryland, they didn't have an idea and pretty much sent us home.  We saw an allergist there and an ENT who  spent just a few minutes with us.  For the agony and the discord we're in....no one seems to be willing to "take it on".   When we went there we thought a team of doctors would talk and discuss...that never happened.  We had two appointments with two doctors and that was it...there didn't seem to be any discussions going on or bringing other doctors into the case.  It was hardly anymore different than being here local.

We're at the end of our rope.  His tolerance for it is gone.  He says the agony is so bad that he is considering suicide if we can't figure this out.  I believe him.  In addition, to make things more complicated, he can't tolerate any of the anti-depression/anxiety drugs that his general doctor recommended to help him cope.  We've tried approximately 8 or so...it just seems to be going in circles.  It's destroying our family.  :(

If you have any one or any place that you can refer us to or a condition idea we can research or a treatment idea please share.
Thank you again Dr. Rajgopal.  I apologize for my desperate plea...however we are in a desperate situation.  :(

[Dr Rajgopal]

Hi Tam,
Please consult an oral surgeon if all the other conditions have been ruled out. Thinning of the oral mucosa because of Oral submucous fibrosis (initial stages) or other oral conditions may need to be ruled out. Take care!  

[tam1988]

Thank you so much for your concise reply.  Ironically we've investigated virus, bacteria, pathogens etc and to no avail.  However most of the allopathic doctors here are quite close minded to the idea or if not close minded they don't know how to help.

The acid reflux arena has been investigated "almost" fully.  He's not had the PH probe done however he has taken Protonix (and other acid blockers) in a variety of ways...one in which we took a dose in the morning and at night to rule out Laryngopharyngeal Reflux.  He did this for about 2 or 3 weeks and no healing seemed to occur...or sensitivity relief.

We're open to visiting these ideas again....we just HAVE to get him relief.  Do you know of anyone in the world (literally) who would be a good doctor for him to see?  We are willing to travel anywhere for the right doctor.

[Dr Rajgopal]

Hi,
The signs and symptoms of Glossopharyngeal neuralgia include Throat pain, Ear pain , Pain in base of tongue and Pharyngeal pain. Pain is an essential factor of neuralgia. The symptoms of sensitivity to food and oesophageal spasms could be due to Acid reflux. The presence of viruses and bacteria.and their toxins also changes the chemical system within the  body and thus cause a chemical imbalance. This leads to difficulty digesting many different foods as well as absorbing the nutrients from the food that one is eating. Thus sensitivities to food is developed. The food sensitivities increase in types and intensity and one experiences poorer and poorer health. It's a vicious cycle. Please consult a GI specialist and ENT surgeon for the examination, investigations and diagnosis. Hope this helps you. Take care and regards!