Questions as I am new to the board

1

Hi all,

As mentioned earlier, I have not been diagnosed with GPN, although one ENT suggested this is what I have. I am getting more and more depressed just thinking about all of this.

Can you please tell me about your symptoms. I am just curious. I have intense pain in my left tonsil area and that is it. Yesterday, the pain went from the left tonsil to the right tonsil. It is pretty excruciating and constant- not intermittent and not sharp and stabbing. More like just pain.

I have noticed when I clamp down on the scar tissue the pain goes away- I wonder why this is? I am growing more fearful that it is not the scar tissue causing the pain but that I could have this condition.

I have been taking Gebetinin (600 mg a day) and it does not seem to be helping at all. Does this mean that maybe it is not a nerve thing after all if the med does not work.

I am really scared. I need to do something for the pain and be able to function.

What test do I need to have to confirm if I have this so I can talk to my ENT about it next week.

Do my symptoms sound like GPN, or do you think the scar tissue could be causing the pain? It is hard to know until I am healed with no scar tissue but I guess I am thinking the worse.

Thanks for your help

2

Hello hello!

I'm sorry for the late reply, and I wish I could offer you some definitive answers, but there are so many variables that is a bit difficult to, it could well be that you have an atypical form of the GPN or maybe a neuropathy? Just because one med isn't helping you at that level doesn't mean that it wouldn't at a highter level, or that another drug wouldn't work better for you.

I don't have constant pain now, but I had almost constant face pain when I was taking the gaba and lyrica (I have to say I'm more of an exception than a rule there) and for me that pain was all as a result of the aforementioned drugs. My problem is the stabbing in the ears although I have also had throat issues, they seem to be controlled by the tegretol and I only very rarely have issue with that now.

It does sound like the scar tissue you have may be causing the problem, or maybe there was some damage done to the nerve during surgery? The only suggestion I would make while waiting to speak to your ENT would be to dose up on the anaesthetic throat spray, it might take the edge off it for a while for you.

I wish I could be of more help, but I wish you all the best in getting to the bottom of it and getting a suitable treatment to get shot of the pain for you.

Much love

Gracie x x x

3

Hi Gracie,

I appreciate your help so much. I think that both of the ENT's I have seen both seem to think that my pain will be temporary and that I may just have sensitive nerves and that the scar tissue is very thick and rubbing against them. That is funny that you say that about the Gabetin because I was thinking that my pain has gotten worse since taking that. Do you think the Gabetin could be making my pain worse?

So, do most people With GPN seem to have the pain intermittenly? That is what I am most confused by is that it seems like it is a shooting pain through the throat as opposed to constant pain. I do know of another guy who had pain one one side and also scar tissue- same as me and he said once the scar tissue went away his pain went away.

I am just not convinced that is my issue. One ENT said that he thought I could have GPN but that he has never seen it not go away in situations like mine. Hmm- it does not seem like GPN goes away?

I tell you what, if that is what I have, I would have the surgery tomorrow. I cannot spend years living like this- taking a bunch of meds.

How do you function on the medication? I took 300 mg of Gabetiin to day and could barely function.

I don't know about you, but this is affecting my whole life. I can barely function like this and the pain.

So, have you tried the topical pain things? I heard they put cocaine on your throat to see if the pain goes

away?

What test will identify if I have this GPN- do you know? I hope my ENT has some good news for me next week.

I think I would feel so much better without all of this scar tissue- that is so annoying on top of everything else.

My parents are ready to take me to the Mayo clinic as they are just so worried.

Have you heard of GPN going away on its own? Have you tried accupuncture for the pain? I am going to try and get in tomorrow.

I had one of my friends tell me it is mind over matter with pain. Trust me that is easier said then done. I had another friend with RA and she was told by doctors that she was going to get worse and worse. She basically said no I am not- I am going to heal and sure enough her RA is completely gone. I keep trying to remain positive but it is hard right now.

I am glad you are feeling better or at least have your pain managed. Hmm- I wonder why when I push on the scar tissue the pain goes away? Question for the doctor I guess.

Glad to have met you and look forward to your reply. -Suzie

4

Hey Suzie,

I'll try and work my way through your questions and answer them to the best of my ability! It is very possible that the scar tissue has built up and is causing a compression against the nerves there, and it may be as the scaring goes down that the pain subsides, we can but hope!

The gabapentin, for me it did give me pain but within my trigeminal nerve and that really confused my diagnosis, I was crippled with pain in my face for months, but I guess looking back that it was just an assumption that the condition was progressing and not that the very drugs I was taking for the neuralgia were giving me more problems, hindsight is a wonderful thing, but on stopping it ( after a horriffic withdrawal) and after stopping the lyrica too that element of the pain I was getting dissappeared entirely, it was as though all the anticonvulsive meds I was taking were almost working against each other or putting my t- nerve into over drive, so stopping it, for me was the BEST thing I EVER did, in saying that it is a very useful drug for a lot of folks, everyone reacts differently to these things.

GPN well now everyone on this board will probably tell you a different story as to how their pain manifests and for how long or if its one side or billateral, the literature will tell you that some people may only ever have one attack, while others it comes and goes into remission again like with trigeminal neuralgia, for me, I've not had a remission in 4 years I've had it daily, ( but given both sides are affected I guess one side could be in remission as the other stayed active, I've never thought about it, its been there daily so I just assume its here to stay)

My pain comes in attacks, like lightening bolts deep deep in my ears, my throat is very rarely affected since taking the tegretol its fairly settled. ( I did have throat pain going back a long time, and I think that was down to the eagles syndrome, but thats another story entirely!) but there are others on the board who suffer from atypical pain, which would be more similar to what you're describing.

The meds are something that can settle in your system, some better than others, when I started on them I had to have 6 weeks off work because I was so damned wasted, bouncing off walls, not seeing straight, balance, vision,speech were all affected and that was on 100mg of teg twice a day, right now, I am up to 1600mg daily, it does settle, or at least it did for me, but in saying that, some teg I tollerate, others I don't.

There are topical anaesthetics that work for some but because of it being in my ears I've never pursued that, and yeah, I've read about the coke and the ket getting used to numb it.

I believe one of the diagnostics is to try a GPN nerve block- ( I asked about this but my pain doc about feinted at the mere suggestion, I beliieve its a lot more common to offer that in the states as a diagnostic, there are also MRIs or with contrast that could show a compression against the nerve

I have tried accupuncture, but that was before I knew it was the glosso and not the trigeminal, so I think we were maybe focussing our attentions in the wrong place, that being said it was genuinely relaxing ( which is quite a statement from a needle-phobe!)

Staying positive is hard, believe me I know that and I still have dark days, I believe wholeheartedly that there's a grieving process for a condition like this, because there are many implications of it for us, and in many aspects of our lives that you wouldn't give a second thought to normally...... Pain is not just a matter of mind over matter, if it were do you think there would be so many people willing to risk their lives multiple brain surgeries? I wish I could believe it but unfortunatley it certainly hasn't been the case in my experience.

I'm not sure why it feels better when you push on it, I would imagine that the pressure is confusing the nerve paths in such a way that the pain is disrupted? Thats just a guess though!

Glad to have met you too hun, just sorry it';s under such cr*ppy circumstances, I really hope that you do well at your appointment though and that they can find you some answers soon.

Much love

Gracie x x x

5

One other thing I forgot to mention, is have you looked at eagles syndrome at all......... it may be something to consider? Just a thought.

xxx

6

I love Gracie...she is so full of information. And love your humor too, Gracie!

I will give you a little bit of my story. Last Nov 2010 I had a cold, and I started having pain in my sinus, literally the right nostril, and then into my right ear. I went to the ENT and he scoped my nostril and saw nothing significant, but ordered a CATscan for the ear pain. He thought it might be trigeminal neuralgia.

Well, being the hypochondriac that I am, I immediately looked it up on the Internet, and there were all sorts of things that popped up, from it being a tumor, to it being the start of MS, etc, etc. He gave me a prescription for Gabapentin, and although it made me extremely sleepy at first, it started to really help. I gradually increased my dosage to 900 mg three times daily.

He also referred me to the neurologist. By this time, I was having a stabbing pain in my right ear, almost like a knife was slicing through my ear and it coming out the inside of my throat.

Feeling smug from my NEGATIVE Catscan, I went to the neuro thinking that she would just confirm his diagnosis of TN. Well, my neurologist thought that maybe it wasn't so much Trigeminal Neuralgia, but, rather, Glossopharangeal Neuralgia or Genticulate Neuraglia (which involes more the ear than throat) She ordered an MRI contrast, "just so we can rule out the scary stuff" Well, of course I go home and am panicked about them finding a tumor or something else.

MRI showed nothing remarkable, (no tumors (thank God!) the nerves looked fine and she continued my prescription for Gabapentin. I felt I was gaining weight with it, though, and I had her switch it to Topamax, but that made me very loopy and feeling STRANGE. So I stopped that.

After trying four or five sessions of accupuncture, I have been off of all meds for a couple of months. Do I think it worked? Not really. I think maybe I am going through a remission right now. I still feel a SLIGHT pain in my right ear, none in my throat at the moment, and hope it goes away and stays away. But who knows?

My general MD put me on Pristiq, an antidepressant, and I've been feeling pretty good since then? I wonder if that has just helped me stop thinking about it so much and not stressing every single minute of every day about it??

I am just very thankful that they did not find something like a tumor or MS lesions to attribute to this VERY STRANGE phenomenon called GN!

I hope today finds you in a pain-free state!!!

Hope that helps a little....

Kara

7

** Gee shucks!** Thank you, most of the time I waffle nonsense, but I'm glad to be of some use once in a while! :)

It's funny the things you mention, much of it is so similar to my own story.I had my tonsils and adenoids out as a child ( the tonsils grew back the stealthy little ninja b*ggers, but that's another story again) anyway, going back for as long as I remember I would get periodic pains in my nose, burning, eyewatering grim pains, but never really paid it too much attention, cause it would just come and go ( normally with a change of temperature) anyway that was never something I really followed up on.

For at least the last 8 years or so I was getting throat pains on and off, it mostly right sided, that felt kinda like an infection, or some kind of sorethroat like you would get with a cold, but only ever one sided, it only lasted for kinda brief periods at a time so again to begin with; I never followed up on that until the clicks started ( or at least I became aware of them), it I felt like I had a lump in my throat and clicks when I dry swalowed, this was probably 7/8 years ago, once the clicks started, I figuredthat they and the pain were interconnected and I finally saw an ENT, who basically said there was nothing to worry about.

That, I believe was the pain from the styliod initally, then I became aware of the snapping/clicking but until a couple of years ago, I never connected it to the nerve pain, stupid I know, but it was focussed in my ears,and then in my face!

I tried amytriptaline for a while, but I couldnt tollerate it and hold down a job where I need to get up in the morning, and truthfully I probably didn't take it for long enough to see if it helped with the GPN, but I need to work, so its all trade off. I do know some folk find that amy is a lifesaver for this, maybe the pristiq works in the same way?

I do have to agree wholeheartedly it is a VERY VERY strange beast indeed!!!

Much love

xxx

8

Kara, Thank you so much for sharing your story! GPN is so confusing sometimes, just when I think I understand what it is doing to my body something else happens. Since June 24 it has come back this time as a rubberband being popped against my throat but like through a sweatshirt (if that makes since) but lately it seems like the sweatshirt has been removed and the pops are harder. This morning I had a harder and langer shock, the kind that make you not want to swallow anything. I have been taking 4800mg gabapentin daily but am beginning to think it’s not working anymore. I am glad you mentioned topamax I hope the doctor can perscribe something different or something. Thanks you so much for your info! God bless! Sally

Kara Wilson said:

I love Gracie...she is so full of information. And love your humor too, Gracie!

I will give you a little bit of my story. Last Nov 2010 I had a cold, and I started having pain in my sinus, literally the right nostril, and then into my right ear. I went to the ENT and he scoped my nostril and saw nothing significant, but ordered a CATscan for the ear pain. He thought it might be trigeminal neuralgia.

Well, being the hypochondriac that I am, I immediately looked it up on the Internet, and there were all sorts of things that popped up, from it being a tumor, to it being the start of MS, etc, etc. He gave me a prescription for Gabapentin, and although it made me extremely sleepy at first, it started to really help. I gradually increased my dosage to 900 mg three times daily.

He also referred me to the neurologist. By this time, I was having a stabbing pain in my right ear, almost like a knife was slicing through my ear and it coming out the inside of my throat.

Feeling smug from my NEGATIVE Catscan, I went to the neuro thinking that she would just confirm his diagnosis of TN. Well, my neurologist thought that maybe it wasn't so much Trigeminal Neuralgia, but, rather, Glossopharangeal Neuralgia or Genticulate Neuraglia (which involes more the ear than throat) She ordered an MRI contrast, "just so we can rule out the scary stuff" Well, of course I go home and am panicked about them finding a tumor or something else.

MRI showed nothing remarkable, (no tumors (thank God!) the nerves looked fine and she continued my prescription for Gabapentin. I felt I was gaining weight with it, though, and I had her switch it to Topamax, but that made me very loopy and feeling STRANGE. So I stopped that.

After trying four or five sessions of accupuncture, I have been off of all meds for a couple of months. Do I think it worked? Not really. I think maybe I am going through a remission right now. I still feel a SLIGHT pain in my right ear, none in my throat at the moment, and hope it goes away and stays away. But who knows?

My general MD put me on Pristiq, an antidepressant, and I've been feeling pretty good since then? I wonder if that has just helped me stop thinking about it so much and not stressing every single minute of every day about it??

I am just very thankful that they did not find something like a tumor or MS lesions to attribute to this VERY STRANGE phenomenon called GN!

I hope today finds you in a pain-free state!!!

Hope that helps a little....

Kara

9

Hi Kara- I thought GPN involved the throat more than the ear. Is this not the case? Can you describe your throat symptoms for me? I have been thinking of trying accupuncture myself. Thank you. -Suzie



Kara Wilson said:

I love Gracie...she is so full of information. And love your humor too, Gracie!

I will give you a little bit of my story. Last Nov 2010 I had a cold, and I started having pain in my sinus, literally the right nostril, and then into my right ear. I went to the ENT and he scoped my nostril and saw nothing significant, but ordered a CATscan for the ear pain. He thought it might be trigeminal neuralgia.

Well, being the hypochondriac that I am, I immediately looked it up on the Internet, and there were all sorts of things that popped up, from it being a tumor, to it being the start of MS, etc, etc. He gave me a prescription for Gabapentin, and although it made me extremely sleepy at first, it started to really help. I gradually increased my dosage to 900 mg three times daily.

He also referred me to the neurologist. By this time, I was having a stabbing pain in my right ear, almost like a knife was slicing through my ear and it coming out the inside of my throat.

Feeling smug from my NEGATIVE Catscan, I went to the neuro thinking that she would just confirm his diagnosis of TN. Well, my neurologist thought that maybe it wasn't so much Trigeminal Neuralgia, but, rather, Glossopharangeal Neuralgia or Genticulate Neuraglia (which involes more the ear than throat) She ordered an MRI contrast, "just so we can rule out the scary stuff" Well, of course I go home and am panicked about them finding a tumor or something else.

MRI showed nothing remarkable, (no tumors (thank God!) the nerves looked fine and she continued my prescription for Gabapentin. I felt I was gaining weight with it, though, and I had her switch it to Topamax, but that made me very loopy and feeling STRANGE. So I stopped that.

After trying four or five sessions of accupuncture, I have been off of all meds for a couple of months. Do I think it worked? Not really. I think maybe I am going through a remission right now. I still feel a SLIGHT pain in my right ear, none in my throat at the moment, and hope it goes away and stays away. But who knows?

My general MD put me on Pristiq, an antidepressant, and I've been feeling pretty good since then? I wonder if that has just helped me stop thinking about it so much and not stressing every single minute of every day about it??

I am just very thankful that they did not find something like a tumor or MS lesions to attribute to this VERY STRANGE phenomenon called GN!

I hope today finds you in a pain-free state!!!

Hope that helps a little....

Kara

10



svantate said:

Hi Kara- I thought GPN involved the throat more than the ear. Is this not the case? Can you describe your throat symptoms for me? I have been thinking of trying accupuncture myself. Thank you. -Suzie

Kara Wilson said:

I love Gracie...she is so full of information. And love your humor too, Gracie!

I will give you a little bit of my story. Last Nov 2010 I had a cold, and I started having pain in my sinus, literally the right nostril, and then into my right ear. I went to the ENT and he scoped my nostril and saw nothing significant, but ordered a CATscan for the ear pain. He thought it might be trigeminal neuralgia.

Well, being the hypochondriac that I am, I immediately looked it up on the Internet, and there were all sorts of things that popped up, from it being a tumor, to it being the start of MS, etc, etc. He gave me a prescription for Gabapentin, and although it made me extremely sleepy at first, it started to really help. I gradually increased my dosage to 900 mg three times daily.

He also referred me to the neurologist. By this time, I was having a stabbing pain in my right ear, almost like a knife was slicing through my ear and it coming out the inside of my throat.

Feeling smug from my NEGATIVE Catscan, I went to the neuro thinking that she would just confirm his diagnosis of TN. Well, my neurologist thought that maybe it wasn't so much Trigeminal Neuralgia, but, rather, Glossopharangeal Neuralgia or Genticulate Neuraglia (which involes more the ear than throat) She ordered an MRI contrast, "just so we can rule out the scary stuff" Well, of course I go home and am panicked about them finding a tumor or something else.

MRI showed nothing remarkable, (no tumors (thank God!) the nerves looked fine and she continued my prescription for Gabapentin. I felt I was gaining weight with it, though, and I had her switch it to Topamax, but that made me very loopy and feeling STRANGE. So I stopped that.

After trying four or five sessions of accupuncture, I have been off of all meds for a couple of months. Do I think it worked? Not really. I think maybe I am going through a remission right now. I still feel a SLIGHT pain in my right ear, none in my throat at the moment, and hope it goes away and stays away. But who knows?

My general MD put me on Pristiq, an antidepressant, and I've been feeling pretty good since then? I wonder if that has just helped me stop thinking about it so much and not stressing every single minute of every day about it??

I am just very thankful that they did not find something like a tumor or MS lesions to attribute to this VERY STRANGE phenomenon called GN!

I hope today finds you in a pain-free state!!!

Hope that helps a little....

Kara

11



Kara Wilson said:

Hi Suzie....I hope you get this 'cuz I'm not sure I am replying in the right "reply" box......I asked the doc to tell me whether is was GPN or just Genticulate Neuralgia, and she couldn't give me a definitive answer. I think one more involves the ear and one more involves the throat.
I have been off my meds for a couple months now. When it was bad, it would be like a knife going through my ear and coming out of the inside of my thrat, by my tonsils. I can't tell you how many times I looked down my throat with a flashlight, looking for a tumor or something. It just feels like hot water being poured on that side of the throat...and down my ear.
Today I feel a very, very slight something deep in my ear, but not bad enough to take even an Advil for.
I am waiting for it to come back, as I have read many stories on the board here that it comes and goes a lot with people, goes into remissions, etc.
When it was at its worst, it's ALL I could think about. It really took over my life.
I am not sure the accupunture put it to "rest" for a bit, but he put the needles around the back of my ear, up to my temples, down my neck a bit, as I was getting symptoms running down my neck.
Let me know if you go and if you have any luck with it!!!
God bless!! Kara

svantate said:
Hi Kara- I thought GPN involved the throat more than the ear. Is this not the case? Can you describe your throat symptoms for me? I have been thinking of trying accupuncture myself. Thank you. -Suzie

Kara Wilson said:

I love Gracie...she is so full of information. And love your humor too, Gracie!

I will give you a little bit of my story. Last Nov 2010 I had a cold, and I started having pain in my sinus, literally the right nostril, and then into my right ear. I went to the ENT and he scoped my nostril and saw nothing significant, but ordered a CATscan for the ear pain. He thought it might be trigeminal neuralgia.

Well, being the hypochondriac that I am, I immediately looked it up on the Internet, and there were all sorts of things that popped up, from it being a tumor, to it being the start of MS, etc, etc. He gave me a prescription for Gabapentin, and although it made me extremely sleepy at first, it started to really help. I gradually increased my dosage to 900 mg three times daily.

He also referred me to the neurologist. By this time, I was having a stabbing pain in my right ear, almost like a knife was slicing through my ear and it coming out the inside of my throat.

Feeling smug from my NEGATIVE Catscan, I went to the neuro thinking that she would just confirm his diagnosis of TN. Well, my neurologist thought that maybe it wasn't so much Trigeminal Neuralgia, but, rather, Glossopharangeal Neuralgia or Genticulate Neuraglia (which involes more the ear than throat) She ordered an MRI contrast, "just so we can rule out the scary stuff" Well, of course I go home and am panicked about them finding a tumor or something else.

MRI showed nothing remarkable, (no tumors (thank God!) the nerves looked fine and she continued my prescription for Gabapentin. I felt I was gaining weight with it, though, and I had her switch it to Topamax, but that made me very loopy and feeling STRANGE. So I stopped that.

After trying four or five sessions of accupuncture, I have been off of all meds for a couple of months. Do I think it worked? Not really. I think maybe I am going through a remission right now. I still feel a SLIGHT pain in my right ear, none in my throat at the moment, and hope it goes away and stays away. But who knows?

My general MD put me on Pristiq, an antidepressant, and I've been feeling pretty good since then? I wonder if that has just helped me stop thinking about it so much and not stressing every single minute of every day about it??

I am just very thankful that they did not find something like a tumor or MS lesions to attribute to this VERY STRANGE phenomenon called GN!

I hope today finds you in a pain-free state!!!

Hope that helps a little....

Kara

12

Hi Kara,

I tried accupuncture today and will continue going to see if it helps. My pain is only in the throat and only in the tonsil area. It is a constant ache but more than an ache, I don't get shooting stabs but I feel it all of the time. It used to be that the pain was only on the left side and in the tonsil and now it on the right. It switches back and forth- sometimes in the same day. It also seems I can feel it straight down the pharynx and at times it is excrutiating. My scar tissue is still pretty thick and I would consider having it out just to see if it makes a difference but want to wait a while as I keep getting told that it will eventually go away so I don't feel it anymore. My gut tells me the scar tissue is rubbing on the tonsil where the glosso nerve is but I am just not sure. I have an appointment with a neurologist in 2 weeks so hopefully I can get to the bottom of this and get some answers. I just don't want to spend a long time getting diagnosed.

I am a little concerned that now the pain is going from the left to the right where it never was before. My only comfort is that when I spoke with the woman from University of Pittsburgh, she said that you don't wake up every day and have the pain be on the left and then the right, etc. She said she had never heard of that before. I keep hoping and praying that I am just having GPN pain but don't actually have GPN.

So, can I ask you- was your pain constant in the throat? Or just the stabbing intermittent pain that radiated to your ear. I also know for a fact that I have teeth issues but it just not make sense that the pain would be in the tonsils if that was the case. How is your pain now? I hope accupunture is helping you- are you still going? I hope you are having a good weekend. -Suzie

13

Sorry this took me so long to respond. I saw it come up on my phone, but wanted to respond when I could sit down at my computer.

Glad you are getting accupuncture! I am curious: Where did they place the needles? When I started getting it, the pain had left the throat area, and gone to my right ear.

About the pain, mine was really weird. It WOULD SWITCH occasionally from side to side. That was early on. I would have it back and forth in my throat. I had a flashlight down there three or four times a day, looking for something! Then sometimes I would try to feel down my throat (with gloves on) to see if something was there...and about gag myself...lol! That was about the time that I was going to go BACK to my ENT and schedule a scope of my throat. The throat pain lasted about 6 months (along with my ear pain) and I did not have one reason in the world for it starting. No surgery, scar tissue, anything! All I had had was a cold, and my ENT surmised that possibly a virus or something was irritating the nerve. And the pain would be CONSTANT, not the stabbing/shooting episodic pain that I've heard people describe on this site.

That's when my hypochondriac self went into full-on panic mode and all I thought about was worst case scenarios.

I ended up seeing my GP and telling him all about my symptoms. He thought it was hogwash. I told him that the pain was real!!! I kind of went backwards (since I have a PPO now) went to the ENT, then a neurologist, and then finally to my GP. At that point (2 months ago) the throat pain had totally gone away, I was having a bit of deep right ear pain still, so my GP put me on the antidepressant Pristiq (to help me stop obsessing about it!) I did accupuncture for four sessions, and now am totally off all pain meds. Did accupuncture help? Not sure. I think so. I know I have stopped thinking about it all day long.

I still do get bouts of right ear pain. MY GP thinks it might be related to grinding my teeth at night?? If it gets bad again, I will make another appointment for accupuncture. I sure hope it helps you! The GPN is maddening!!!!

I hope this helps you a bit...and I wish for you a pain-free day!!!!

Take care ~ Kara

14

Hi Kara,

Thank you so much for your response. My pain is only in the tonsil area or down the middle of my throat in the pharynx. It switches from tonsil to tonsil and is a dull acde but worse than that. So, I placed a call to the University of Pittsburgh a couple of weeks ago and I could not believe but the main neurosurgeon for GPN called me back last night. I could not believe that he actually called back on Sunday no less :) Anyway, I went through all of my symptoms with him and my background. Spent quite a lot of time on the phone with him. He said without a doubt 100% sure that I did not have GPN. He said you never have constant pain shifting from place to place in a given day or hour. I told him my pain went away when I ate something and he said that would definitely be the case with GPN. He said that I was experiencing nerve pain from the surgery and from the scar tissue and that can last over a year. He told me to see my neurologist and be placed on a higher dose of Gab or other nerve medicine. His name was Dr. Mclaughlin. He said if I had GPN I would be the first case he had ever seen with my symptoms. Let's just hope he is right. he did say scar tissue can cause intense pain rubbing up on the nerve. I guess I should feel relieved but then there are a couple of people on here- Katherine and I think Nikki who has the constant pain so it makes me worry. Then again, if he is supposed to be one of the best I would hope he would be able to somewhat diagnose me. The pain sometimes feels as if it is in the teeth but I am pretty sure it is just the tonsil area. What do you think? I just worry because the pain is in the tonsil area and there do seem to be people with GPN with similar symptoms.

I have been to accupunture twice and last time they stuck so many needles in me. They put them in my throat, ear, etc. Then they turned me around and put one in the glosso area. They left me with several little accupunture things in my ears. I don't think it is helping as of yet- but I will keep going.

So, what do you think about what the neurosurgeon said? You think I should feel a little comfort in that? My neighbor said he had surgery and had nerve problems for over a year as well- granted not in his throat. I don't know I am kinda like you just obsessing about this and had convinced myself I had GPN driving my parents, boyfriend, crazy with my own diagnosis :) I am not depressed person- the opposite actually- life of the party kinda person- and now this has completely consumed me. I was thinking about going on antidepressants myself just so I can move on and not focus on this so much. You are right- it is maddening- thanks for listening. -Suzie

15

Suzie ~

I FEEL for you! I, too, became obsessed with it, completely consumed by it. I was driving my husband, mother, kids crazy!

I would listen to the neurosurgeon that called you (that's awesome he called!) and just give it time. I thought mine would never really go away. And it has started to. My symptoms started Nov 2011....so we are nearing the one-year time frame. I remember that I had SCREAMING throat/ear pain, like a hot burning pain around that time. Some days I would put an ice pack on my right ear and just lie with it there. It was awful.

Gabapentin worked well for me. At one point I was on 2,700 milligrams daily. I've also heard that carbamazapine works quite well.

I wasn't sure...have you seen an ENT? Maybe he could scope your throat and see if there's anything causing pain there.

I also am not a depressed person. My GP prescribed it because I tend to obsess about things, and that's what Pristiq helps with also...and it helps boost my mood even more!

Please don't hesitate to write again. It's great to have this support group for us!!!

Kara

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Also, I see that you are only taking 600 mg of Gabapentin daily....maybe a higher dosage would help?? Like I said, at one point I was at 2,700 daily.

Kara

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Hi Kara,

I don't know why but I was feeling more optomistic after speaking with the neurosurgeon, but now I am not. I just know there is something wrong. The pain I get I get in my tonsils is just not normal and very consistent with GPN. And then the pain down the middle of the throat is unbearable. I know it would be unusual to have pain go from one tonsil to the other side and back again, etc. I worry more that there is some sort of glosso nerve damage during the surgery. I am also really thinking strongly about being tested for Eagles Syndrome as this would describe more the pain down the middle that I am experiencing. None of this makes sense and the worse thing is not being able to find pain relief. If I could find that, it would not be as bad. I will keep hoping that what the neurosurgeon said it right but I am also going on 7 months post tonsillectomy. Thanks for listening. I am just growing more scared by the day and just want answers you know what I mean? Well, I look forward to sleeping every night so I am not in pain. Hope you have a good night. -Suzie

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Suzie ~

I know that this condition can really bring a person down, but please keep your optimism! Remember what the doctor told you, that it can take a year for the nerve to heal. As I said, mine came up out of the blue.....no surgery, nothing I could think of caused the pain. I was baffled by it. And in lots of pain. Yesterday I was feeling it a bit just behind my right ear.

You can look at it a couple ways: I was relieved to find out it was just an irritated nerve. Before I went in for my brain MRI with contrast, she told me, "'we have to rule out the "scary stuff." What that meant is she had to make sure there was not a tumor or growth in there pressing on my glosso nerve causing this pain. If it was a tumor, I'd probably be involved with possible cancer treatment right now. So I was so happy to know that it is possibly "JUST" GPN. I know that's hard to hear when you are suffereing from it day in, day out.

I, too, was happy to just get in bed, fall asleep, and forget about the pain. Then I knew for sure I had at least 8 - 9 hours of NO PAIN!!! Didn't have to think about the pain. Didn't have to endure it.

I still think you should check with your doc about up-ing your dosage of Gabapentin (if you can function okay on it). It seemed to relieve the pain quite well, and, in turn, helped take my mind off of it!

I think being tested for Eagle's Syndrome is a good idea too.

Did the ENT prescribe the Gabapentin, or have you seen a neurologist?

Take care....and try not to worry so much. Since Nov 2011, on a pain scale of 1 - 10, with 10 being what I WAS experiencing, I am now at a 1. It can happen. I am just hoping that it doesn't flare up again soon!

Don't hesitate to write back! Kara

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Hi Kara,

I feel like my pain is getting worse and worse. Is this common with GPN? My pain is this constant pain in the middle of my throat like having strep times 10. Did you remember ever having horrible pain in your throat in general? This whole GPN thing just does not feel right and is not the typical symptoms of it- unless there is permanent nerve damage. It feels so much like I have this deep infection. I am going to call my ENT tomorrow and see if he will put me on an antibiotic. My boyfriend was here in July and it seems so much worse now than it was then. It is interesting, but I met this girl today who had horrible throat pain and they could not find out what was wrong with her. They told her to see a neurologist. Anyway, to make a long story short she had a really bad fungal infection and it was actually in her brain as well. It took the right ENT that took the time to find out what was wrong with her. I don't think I have GPN. I don't know what is going on but that just not feel right. I don't think I can wait 2 more weeks for answers either so I may go to the ER tomorrow. I can't imagine GPN feeling like the most intense throat pain ever. Anyway, I am off to sleep and forget once again about pain. Hope you are sleeping well too :)

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Suzie ~ Yes, when the pain was at its worst, it did feel like strep times ten. It is a deep searing, burning pain, like someone has poured boiling water down your throat! And then I had that same pain in my ear. The doc will be able to give you a simple blood test and check your white cells to see if they’re high, which could mean you are fighting some sort of infection.

In the meantime, you should get some relief for your pain…call your doc or get in to a neurologist and see if you can up your dosage of Gabapentin. Like I said, at one point when it was really bad, I was on 2700 mg daily!!

I hope, hope, hope your pain stabilizes a bit today!

Take care ~ Kara