Constant pain vs. intermittent shock-like pain

I tried to respond to Amy's question about constant pain, but she's not taking email responses....hope I do this right:

She asked: "Question time... I have been diagnosed by an ENT and two neuros with GPN..........I have one symptom that doesn't match with what I have read of GPN, my pain is not intermittent, but constant pain for 12-14 hours. Has anyone experienced this?"

Amy, you are describing my pain. When it all started 8 - 9 years ago, I had sharp, stabbing pain - periodically - and bouts of TN and ON (occiptal neuralgia) - but those went away. The GPN was very difficult to diagnose in my case, and over the years it's size and symptoms have morphed from that stabbing pain to a constant pain - 12 - 14 hours daily. Not so bad in the morning and not so bad at bedtime. Some days better than others. Pain is tonsilar and deep in my ear, and the posterior 1/3 of my tongue tastes like I'm sucking a lemon and that it's wedged in my throat - YUCK! Dr. Mark Schwartz (House Ear Clinic in LA) said that's because the nerve has been irritated for so long it has changed from neuralgia to neuropathy and the nerve fibers are damaged.......this makes sense to me - hope it does to you too.

I, like you, Nikki, started with the intermittent type pain and actually had fairly frequent periods of remission. Mid 2009-mid 2010 I was asymptomatic. July of 2010 I went to the constant mode. Unrelenting, 10 out of 10 pain that had me in bed and crying. I believe that the more compression, the higher the pain. I really PRAY that this is behind me. I couldn’t face another surgery.

OMG i have the same problem with the taste and the tongue! but i keep being told they are not related! crazy! but i agree i have intermittent pain BUT the majority of my pain is lasting. it will last in a cycle sometimes for up to a week. for instance, i had the flu and i missed meds for a day. it was like hello nightmare. i had dental work done and now the pain in the back of throat, ear, and tongue, are non-stop. i think it is better to listen to GPN sufferers sometimes than doctors because they know best. and doctors should listen to us too.



Chrisa Alberts said:

OMG i have the same problem with the taste and the tongue! but i keep being told they are not related! crazy! but i agree i have intermittent pain BUT the majority of my pain is lasting. it will last in a cycle sometimes for up to a week. for instance, i had the flu and i missed meds for a day. it was like hello nightmare. i had dental work done and now the pain in the back of throat, ear, and tongue, are non-stop. i think it is better to listen to GPN sufferers sometimes than doctors because they know best. and doctors should listen to us too.

Nikki,

Thanks for the response! I am still trying to figure this website out. I am a Facebook junkie, but this is the first time I have ventured from it. :-) It is so good to hear that I am not alone in how my GPN affects me.

I am still waiting to get my appointment scheduled with UCSD, but I am officially a registered patient. My pain is most prominent deep in the inner ear, I went for years thinking I was having the most excrutiating ear infections. It finally got so bad that I could barely speak. I got into the ENT during an attack, and that was when I was diagnosed with GPN. Since then, the pain has been worse, and has lasted much longer. My episodes may last for 2 weeks, with intermittent spells of relief. I am so scared of another episode, I pray that I can get in for surgery before it hits again! It is scary how what I used to think was a 10 on the pain scale has changed so drastically. Sometimes it changes from day to day! I think it can't get any worse, but it does. I pray everyone can find relief from this hideous thing!

my docs state it is neuropothy also… the damage is done… so the pain is contstant…any answers re: mvd at this stage?

Hi Kathleen, who is your doctor / clinic? Just curious. And that is a VERY good question. If it’s neuropathy at this point, would the MVD work? When I had a consultation with Dr. Mark Schwartz at House Ear Clinic in LA last September, he did say that if I had elected for the surgery years ago, I would have had a 90% + success rate. Now that it’s neuropathy, it would be more in the 70 -80% success rate range. Which would still be pretty good. I’m having a MARVELOUS REMISSION!!! Almost hate to brag because when I do, guess what happens next! I haven’t had a cold all winter - I NEED TO SHUT UP NOW!!! Hope that helped! Have a pain-free day!

I AM SEEING DR PAUL GARDNER PITTSBURGH UPMC. YES I DID TALK WITH HIM YESTRDAY AND HE STATED THE SAME .THANKS

Hi Nikki ~

This describes my pain. I have it all day, and then not so bad pon awakening or at night. And it doesn't seem to hurt so bad when I lay down in general...weird? Sometimes the pain will run down my neck and into my shoulder a bit, but not often.

I am taking Neurontin, two 300-mg caps, three times daily...and wondering if I will have to take it for the rest of my life? I am 44. Reading the discussions on the surgery and complications scares me. Anyways, I am gladf I found this site so that I can talk to others about this dreaded condition!


Warmly, Kara

Hi Kara welcome

I have constant debilitating pain. i am up to 3000 mg neurontin and 600 triliptal.daily. i have pain in my throat,tonsilar,tongue,inner ear, and when it is extremely bad down to my right side of chest and i can not speak or I have a very hoarse voice and breathing causes severe mouth burning..

I am now seeing a ent next week about the eagles syndrome diagnosis... however pending seeing the ct scan myself i am not convinced it is from the jaw area because i have shooting pain at the site of the mvd surgery behind the ear.

Well I hope that you find some answers and glad to hear from you anytime.

Also.... keep the stress to a minimum...stress seems to increase my blood pressure and pulse leading to increased pain.

Kathleen

Kara Wilson said:

Hi Nikki ~

This describes my pain. I have it all day, and then not so bad pon awakening or at night. And it doesn't seem to hurt so bad when I lay down in general...weird? Sometimes the pain will run down my neck and into my shoulder a bit, but not often.

I am taking Neurontin, two 300-mg caps, three times daily...and wondering if I will have to take it for the rest of my life? I am 44. Reading the discussions on the surgery and complications scares me. Anyways, I am gladf I found this site so that I can talk to others about this dreaded condition!


Warmly, Kara

Thanks for your reply, Kathleen. I am sorry to hear that you are in such pain too. My pain seems to change from day to day, sometimes it's worse than others. Yesterday mid day, though, the two pills weren't working, so I took a third and it helped.

Did I read that you had MVD surgery? Or you are going for a consult for what possibly could be Eagle's Syndrome? Would a Catscan or MRI show that elongated bone on the one side if it were Eagle's? Also, my ENT did not scope way down in my throat, and both my ENT and neuro says there is nothing there. But they how do they know without scoping? By the MRI with contrast? By the CATscan? By my description of it? Wondering if I even need to go through that test beacuse I think they both believe they've nailed the diagnosis.........* sigh *

Thanks for listening!

Kara



Kara Wilson said:

Thanks for your reply, Kathleen. I am sorry to hear that you are in such pain too. My pain seems to change from day to day, sometimes it's worse than others. Yesterday mid day, though, the two pills weren't working, so I took a third and it helped.

Did I read that you had MVD surgery? Or you are going for a consult for what possibly could be Eagle's Syndrome? Would a Catscan or MRI show that elongated bone on the one side if it were Eagle's? Also, my ENT did not scope way down in my throat, and both my ENT and neuro says there is nothing there. But they do they know without scoping? By the MRI with contrast? By the CATscan? By my description of it? Wondering if I even need to go through that test ? I think they both believe they've nailed the diagnosis.........* sigh *

Thanks for listening!

Kara

Hi Kara,

I don't know if you'll be on meds for life.........from others on this board, I think as time goes on, they're less effective. I feel your pain! I've had my throat scoped MANY times, and in January, I had a laryngostomy (not the right word, but I had general anesthesia, and my ENT looked into the folds down my throat). I requested this because, even after all these years, I'm not 1000% sure that what I have is GPN........the pain is so bad and weird that I try to convince myself that certainly I'm suffering from something growing down there! But, of course, that study showed nothing down the throat. But it made me feel better. I see a pain management doctor at this point. Hope you have a pain-free day!

Nikki

Hi Nikki ~

Thanks for the reply. I may schedule an appointment for the throat scope, just to make me feel better! I am a hypochondriac to start with...and coupled with this...sheesh! I just keep thinking about Michael Douglas and how it took the docs so long to find his diagnosis...and he had ear and throat pain.

Anyways, pain at a Level 2 today. Funtioncing well!

Hope you have a good day!

Kara

Hi Kara…WISH I could figure out the mechanics of this board. Where’s my 17 year old son when I need him? The reason I had the “big scope” done was because of Michael Douglas’ diagnosis. When you have this GPN beast, it starts ruling your world, including the imaginary world. I’ve had it for SO LONG that if I did have something very sinister, I would be long gone by now. That always brings me back to GPN. I was enjoying a very wonderful remission, which I have been bragging about on this site. Shouldn’t have done that! Now it’s back - about a 6 pain today. I hate this. I’m sure that nerve is so mangled by now, that it should burn itself out ANY DAY!! I think this is a valid theory. Well, I’m hoping Dr. Nikki is right on about this!

Have either of you tried acupuncture? I am thinking of calling an acupuncturist this week!! Have a great weekend…Kara

Hi Kara. Of the many treatments I've tried, I haven't tried acupunture, but it sure is worth a try. I've tried cranial massage, reike, other energy healing, bio-feedback, meditaton, and the fetal position. All of them have temporarily helped........if only in my own little mind. I'm at about a 5 today. Yesterday I was at ZERO........hoping for more ZEROS for all of us. Hope you have a great weekend too! Please keep us posted on the acupunture. Nikki

Okay…will let you know. In theory, I am thinking it will only be temporary, because if there is a blood vessel pressing up against the nerve, there’s nothing going to change the pain in a significant way besides surgical intervention, I suppose.
My pain is about at a 2 today, thank God. So weird how it changes day to day, though. I would think it would be a steady, even pain from day to day. Oh, well!!!
I asked the doc to change me from Neurontin - because I am gaining weight - yikes - and she is putting me on carbamazapine (sp?) hopefully I will get the same results re: pain and not gain any weight with that.
Thanks for the reply :slight_smile:

Hi all. I’m new here and have constant pain instead of intermittent. It really stinks and I wish there was something I could do to stop it.

Kara Wilson said:

Okay…will let you know. In theory, I am thinking it will only be temporary, because if there is a blood vessel pressing up against the nerve, there’s nothing going to change the pain in a significant way besides surgical intervention, I suppose. My pain is about at a 2 today, thank God. So weird how it changes day to day, though. I would think it would be a steady, even pain from day to day. Oh, well!!!
I asked the doc to change me from Neurontin - because I am gaining weight - yikes - and she is putting me on carbamazapine (sp?) hopefully I will get the same results re: pain and not gain any weight with that.
Thanks for the reply :slight_smile:

HI all ~

I am almost afraid to post this in fear of jinxing myself. I feel that I am in possibly a remission. I went to see the accupuncturist. He had me lay on my side and he put needles all around my right ear, back of the neck, and down right shoulder. I had about four treatments spaced three days apart. Well, the pain has subsided considerably. So much that I am off ALL pain meds at the present time. I feel like my pain is about a one or two out of ten OFF the meds. And my internist prescribed me Pristiq (anti-depressant) which has lifted my mood considerably. So not sure if the accupuncture actually worked....I guess I will wait and see if the pain comes back soon. It might be worth a try?

Take care....Kara