Are the sites all wrong?

Whenever I did research on this, all the reputable sites (I try to stick to valid ones) always say something like the attacks last a few seconds to a couple minutes.

I may have had symptoms like that years ago, long before I had even heard of glossopharyngeal neuralgia, before I knew that the symptoms were more than some weird random thing that occasionally happened and then went away soon after on its own. Gone for months or years.

Now that it hurts daily, I don't see the "minutes" thing happening. At least, not in single digit numbers.

So - am I an anomaly, or are the sites all somehow wrong? What experiences have others had?

Mine hurts daily as well with no end in sight, but there are periods that are more intense that only last a few seconds, and I’m thankful for that. If the short bursts of intense pain lasted any longer, I wouldn’t be able to stand it.

At the minimum I felt brief stabs. At its worst 5 to 20 minutes of agony. Now after my MVD surgery, nothing.



CassiTron said:

Mine hurts daily as well with no end in sight, but there are periods that are more intense that only last a few seconds, and I'm thankful for that. If the short bursts of intense pain lasted any longer, I wouldn't be able to stand it.



rick said:



CassiTron said:

Mine hurts daily as well with no end in sight, but there are periods that are more intense that only last a few seconds, and I'm thankful for that. If the short bursts of intense pain lasted any longer, I wouldn't be able to stand it.

You are not going crazy, sounds like you have the Atypical type. I also have the atypical glossopharyngeal neuralgia. It’s all day every day, some days worse than others. I never have experienced the zapping or electric feeling. My pain is more of a slow burn, which intensifies. My neuro told me this is harder to diagnose.

I completely understand how you feel. I have been suffering with this since 2004. after several misdiagnoses from different kinds of dr's and dentists (i thought, at one time, that it could be related to something dental, maybe, mostly because i had run out of other options and the regular and emergency room dr's could see nothing wrong, i think they were thinking i was a druggie trying to get some pain meds for my addiction!!) however, once properly diagnosed, gabapentin was prescribed and has been a life saver for me

i guess my flare ups are more typical, although when i am going through a period of periodic pain (shooting pain everytime i swallow-cough- talk) in the between minutes when the shooting pain stops the residual pain could be described as burning.

mostly, when it isn't shocking and drop to my knees painful for a few seconds, it just feels like "there is something wrong" in the back of my mouth and side of my throat.....again, gabapentin has helped me a lot. it makes me feel a little fuzzy insofar as my mental thoughts, but it at least allows me to survive the flare ups. with out the gaba i would not make it. i would be disabled, at least durring an episode

My attacks seem to last continuously for days with periods of greater intensity sprinkled in randomly followed by a brief pause of almost nothing that might last half a day, two if I’m lucky.

hmschmom, have you gone to a neuralolgist?

because they are the only ones who have heard of this and know what is really going on

Mine last between a few seconds to a few minutes but continuous during attacks. My attacks come every 3-5 minutes of their own accord and then more frequent if I move my tongue, swallow etc. There are many things on different sites that I do not agree with. One of them is testing, that local anesthetist will stop the pain - load of rubbish!!! I had the whole of my throat numbed several times and the pain just kept coming. Not sure about others, but that is what happens with me.



rick said:

hmschmom, have you gone to a neuralolgist?

Oh yes. I was first diagnosed almost 10 years ago, had MVD surgery at UPMC with Dr Horowitz 5 years ago last Thanksgiving, and was free of it until April, when it returned. No doubt that’s what it is. I had two arteries that were the largest he had ever seen sitting on IX and X.



CassiTron said:
Mine hurts daily as well with no end in sight, but there are periods that are more intense that only last a few seconds, and I'm thankful for that. If the short bursts of intense pain lasted any longer, I wouldn't be able to stand it.

i am really lucky that, for the time being anyway, gabapentin works for me. I am going to talk to a neural surgeon soon though and maybe consider the operation. You are the first person i have heard say that the operation was only a temporary fix. I have always thought that if i had the operation i would be cured. that sucks!!!

am really lucky that, for the time being anyway, gabapentin works for me. I am going to talk to a neural surgeon soon though and maybe consider the operation. You are the first person i have heard say that the operation was only a temporary fix. I have always thought that if i had the operation i would be cured. that sucks!!!


hmschmom said:



rick said:

hmschmom, have you gone to a neuralolgist?


Oh yes. I was first diagnosed almost 10 years ago, had MVD surgery at UPMC with Dr Horowitz 5 years ago last Thanksgiving, and was free of it until April, when it returned. No doubt that's what it is. I had two arteries that were the largest he had ever seen sitting on IX and X.

Mof
My symptoms are similar to yours. A constant deep aching pain but only on my left side. I have had 2 MVD surgeries the first 7 yrs ago in Charlotte,NC and the 2nd surgery last yr in Pittsburgh at UPMC . Neither surgery helped with my pain , actually the last surgery made it worse and forced me into retirement at age 61. I take a substantial amounts of meds daily to reduce the pain level but they don’t stop my pain.

Well bottom line I am happy to still be around and look forward to every day. Especially time with my grandson. Just wish I could find some meds that could reduce my pain level more.The current meds make me feel lethargic and slow thinking.

I sometimes become despondent but always pull myself up and keep pushing along. Still beats the alternative.

Take care, Ed

Thanks Ed,
You have a wonderful attitude. I find it inspiring.
All the best to you.

I think it changes due to treatment. My topamax. Maximum dosage 200 mg twice daily maxes the pain and heat more constant and spread out instead of centralized. I was diagnosed last March with gpn. The bonus is it is far less acute and doesn’t take me by surprise. My gpn suggested acupuncture and I went weekly for a month. It helped tremendously. He send I can come back in a month unless I have a flare up. Although insurance didn’t cover it. At 100 a visit I still think it is worth it. Anything that brings relief right. Best of luck

May I ask how much Gabapentin you take? I am suffering terribly with pain when inhaling and am currently taking about 800 mg and percocet with no relief.

rick said:

I completely understand how you feel. I have been suffering with this since 2004. after several misdiagnoses from different kinds of dr's and dentists (i thought, at one time, that it could be related to something dental, maybe, mostly because i had run out of other options and the regular and emergency room dr's could see nothing wrong, i think they were thinking i was a druggie trying to get some pain meds for my addiction!!) however, once properly diagnosed, gabapentin was prescribed and has been a life saver for me