GPN Update

Symptoms & Treatments Surgery
1

This all started out in 2013 as a typical bacterial or viral raw sore throat.

The symptoms changed over time but have been consistent for the past 3 yrs.

The raw feeling has been gone for the past 3 yrs.

I saw 8 ENT’s before I figured out on my own the problem was nerve related.

I have had several CT & MRI’s but no 3d scans.

Current symptoms are:

Sharp knife like pain that starts in my mouth under my tongue traveling to my ear then down my neck passing very near the adams apple to almost my voice box.

I have no feeling to hot or cold on that side of my throat.

It also feels like my throat muscles on that side do not work when I cough or attempt to clear my throat.

I have bouts of hoarseness, cough attacks, trouble swallowing, the feeling my throat muscles are constricting. No difficulty in breathing though.

Swelling of glands? in right cheek, right jaw, both sides of adams apple, shoulders near neck.

Cheek pain is more intense just resting on my right side on a pillow.

Swelling seems to lock step with increase in pain.

Facial tingling

Some foods seem to trigger more intense pain?

Unexplained weight loss at start of problems.

Regained all lost weight.

Fast forward to 2014.

Diagnosed with GPN by 4 neurologists.

One was a former customer that happened to call me after I retired wanting service on equipment he owned.

He recognized my problem as GPN very quickly over the phone by the symptoms I described to him.

Ditto visiting bro in lawi n hospital with unrelated neuro problem.
His neurologist. was quick to suggest GPN.

He didn’t treat GPN & didn’t take my crappy insurance.

Neurologist #2 correctly diagnosed the GPN.

He only wanted to put you in dreamland with pills.

Bingo, good insurance in 2015!

Neurologist #3 correctly diagnosed the GPN.

He was concerned about doing surgery based on my cardiology surgery clearance.

He performed gamma knife radiation on the nerve.

Did not help.

He agreed to surgery after getting a clearance from cardiologist.

The dr still had me on meds.

Very minimal pain for 1 month following surgery.

Just low level tingles.

The pain started increasing.

It is now at or worse than 2013 levels.

The symptoms continue to morph.

Neurologist referred me back to ENT.

Waiting to hear what they think after their pow wow!

2

I hope you find some relief soon. I found your cough description very revieling as I have recently developed that sympton with no relief. I never thought it would be related to my GPN. I will have to talk to my neurologist. Not all meds make you a zombie, I think you should work with a neurologist to find the right med or combo of meds at the right dosage for you. It has been a 4 year journey of med changes for me, I am getting very close to perfect. I take topomax and cymbalta both once a day at night. I switched to a extended relase version of topomax at a lower dosage and it helped a lot. I have only been on the cymbalta about 6 weeks so we are still working on it. Best wishes!

1 Like
3

Hi Foxy

Thx for your reply.
My cough problem appears to be related to my not being able to clear my throat & possibly my inability too feel hot or cold going down my throat on that side?
I am currently on gabapentin which seems to have become ineffective as was tegretol after taking it for a while. I experienced gastro side effects taking cymbalta.
Maybe my neurologist needs to send me to send me to pain management?

4

I don’t know about pain management, Herb. TN/ATN has been under the umbrella of nuero for a very long time. In my experience pain management doesn’t like to mess with anti-seizure meds, which are what are most frequently used for these conditions, and they don’t like to mess around with migraine/brain issues so much either and the trigeminal nerve system tends to be part of all that. I would say keep looking for a good nuero.

5

Hi azurelle
Thanks for your input about pain management.
I don’t think a change of my neurologist is in order at this time.
My current neurologist required submission of my medical history before accepting me as a patient.
He only accepts patients he thinks he can help.
I am not ready to give up on him yet.
I am not quite sure if the effect of my current med is diminished or the pain has ratcheted up.

6

Have you tried other meds more specific to nerves like lyrica or trileptal? Cymbalta is more of a second generation never pain med. Someone posted in a different thread that they used chloraseptic for thoart pain with some relief.

It sounds like surgery was successful but the nerve was already badly damaged so it hasn’t “held.”

Like foxy said, finding the right combo of meds takes time and patience, which are hard to come by when you have these problems!

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Hi azurelle

I have tried trileptal I think in conjunction with baclofen.
All these drugs seem to do something for a while then become less effective?
I have not tried lyrica.
What bothers me is why I have pain if the nerve was severed?
My neurologist says some of my symptoms are not ones he normally associates with GPN.

8

@Herb The reason you still have “pain” is part of the nerve is still connected and what you are “feeling” is phantom pain. There are a number of strategies that can help. Most common is Mirror box therapy. Its VERYspecific, highly effective and not a DIY project. You can see it in action here: https://www.youtube.com/watch?v=WMfnLZWWW7U

This treatment does not require expensive equipment (just two mirrors, joined together at a right angle into a “mirror box”), but does require some investment of time.

For ten minutes, twice a day, for eight weeks, a patient touches, strokes, and massages the pain free side of their face, while looking at the reflection diagonally opposite them.

By touching the painfree side, but seeing the painful side being touched (thanks to the mirror box), the brain begins to interpret the pleasurable feeling as coming from the painful side.

After a few months, the brain begins to ignore the painful sensations Our nervous system is that flexible an actual NEW neuropathways develop. There has been a fair amount of success with this treatment with asymetric pain (pain on one side) even when the nerves have not been cut or ablated

TJ

9

You beat me to it, TJ! I worked with a vet who did the mirror box thing with outstanding success for a leg with phantom pain – the mind is truly amazing and we really understanding very little about how it all works.

Herb, yeah, the biggest problem with chronic meds is that you’ll eventually have to adjust the dose as they become less effective as your body adjusts to them. I heard it explained by a pharmacist/researcher/medication developer as what happening is the medication is interrupting what your body considers to be a natural process (regardless of how it makes you feel) and therefore your body gradually puts itself back to the the “natural” state so you have to change the meds to force the “natural” state to stop again. This is why you always want to start at the lowest possible dose and work your way up, stopping and holding steady as soon as you get what you want. This will give you more flexibility to increase doses over a longer period of time.

Lyrica was developed specifically for nerve pain so that might be a good option to try. Lidocaine, which is a cream or a patch, was also designed for nerve pain. I don’t know if you have a place you can apply it or not but that would be worth trying if you do.

10

Hi everyone, Thanks for all of the information in this thread. Are there any documented cases of mirror therapy working for GPN or any facial neuralgia?

11

I just got off cymbalta. It was the worse medication ever! there is a fb group called cymbalta hurts more, you should check out their research on the withdrawal methods and symptoms

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foxycitamama – I’m right there with you. I took 30mg of cymbalta for about 90 days and it took 18 months to come all the way back off it. I went into “cymbalta withdrawal syndome” and had sky-high blood pressure along with crippling muscle cramps (among other things). That medication is not nearly as benign as implied. I would put it on bottom of the list of things to try, right before surgery!