Trigeminal Neuralgia Pain Questions

dixy · 09-22-2008, 05:49 AM

Hi Sue! I had TN on the right side of my face for over 10 years and in the last year it has moved to the other side. I found a great book called Striking Back by Weigel and Casey ISBN 9780967239323. It really is a Bible for anybody suffering from facial pain. I have TN type 2 which means that I can be in constant pain for days. It hits me like a severe tooth ache. I had several unnecessary dental procedures before I was diagnosed properly. Does anybody know whether TN could be caused by damage in the brain stem or neck??

Burntmarshmallow · 09-22-2008, 07:00 AM

I am sorry for your pain.I am having a tough time of things right now too. But I offer you low pain wishes and some hugs

The t.n. nerve starts at the base of the brain stem. and it most surely can come from an injury to head or neck.I know of other who had injuries to head and or neck and got t.n. from injury. also other who got t.n. or worse from brain surgery. hope this helps you. and I hope others come and lend their info to you.

Low pain at you
PEACE
BMW

Sundog30 · 09-29-2008, 03:05 PM

Hi Pain Sucks,
I'm sorry to hear you are going through such pain.....I think we all understand what are going through, at some point. I have eye/forehead pain only and it's tough finding info. on it either.

If you don't have the book, Striking Back, please get a copy. I am currently reading it and one section is about different diagnoses of pain and Geniculate Neuralgial (pg. 86-87) describes symptoms that seem very similar to yours. "The pain is very much like TN except that it strikes deep in the ear..." The pain of GN is sharp, stabbing and electric-like just like TN. Some people describe it as a feeling like they have an ice pick in their ear. The pain comes and goes but attacks may last for minutes or drag on for hours"..... If
you want me to send you the rest of it, let me know. All the best.....Bonnie

Quote:

Originally Posted by painsucks

Hey I'm a new memeber who's confused and in pain...I've been having a terrible stabbing pain in my right ear that keeps re-occuring about once a week, it just keeps happening more often and it's beginning to effect my life .. after seeing a bunch of random doctors who didn't help I decided to do some research...Trigeminal Neuralgia is the only thing that sounds exacty what has been happening to me..I'm sorry that anyone has to go through this kinda pain but I'm kinda glad I'm not the only one...I was just wondering if anyone could help me with what exactly I should bring up to the doc next time I go in? I was just gonna print off info from a site and shove it in their faces lol ...this one has lasted about 2 days now..and it started right after I went to the dentist and had to keep my mouth open for about an hour..sometimes it just comes outta nowhere and I can't move or talk without almost passing out from the pain or it just throbs constantly.. and i cant usually touch my ear at all or anywhere near my ear or cheek...it feels like my ear drum is about to burst when it gets that bad..I usually just use a hair dryer to dull the pain sometimes.. a doc once told me that I had a narrow ear canal and that it was normal and that all I had to do was pop my ears and I'd be fine...I'd like to see him get a hot needle jammed in his ear a million times and tell me it's normal..I have no faith in doctors anymore..how sad..it's getting really out of hand and I can't take it anymore...if anyone could respond to me with anything that I can do or tell the docs without them thinking it's normal that would be great...

Thanks!!

jinxster · 11-17-2008, 07:38 PM

Quote:

Originally Posted by painsucks

Hey I'm a new memeber who's confused and in pain...I've been having a terrible stabbing pain in my right ear that keeps re-occuring about once a week, it just keeps happening more often and it's beginning to effect my life .. after seeing a bunch of random doctors who didn't help I decided to do some research...Trigeminal Neuralgia is the only thing that sounds exacty what has been happening to me..I'm sorry that anyone has to go through this kinda pain but I'm kinda glad I'm not the only one...I was just wondering if anyone could help me with what exactly I should bring up to the doc next time I go in? I was just gonna print off info from a site and shove it in their faces lol ...this one has lasted about 2 days now..and it started right after I went to the dentist and had to keep my mouth open for about an hour..sometimes it just comes outta nowhere and I can't move or talk without almost passing out from the pain or it just throbs constantly.. and i cant usually touch my ear at all or anywhere near my ear or cheek...it feels like my ear drum is about to burst when it gets that bad..I usually just use a hair dryer to dull the pain sometimes.. a doc once told me that I had a narrow ear canal and that it was normal and that all I had to do was pop my ears and I'd be fine...I'd like to see him get a hot needle jammed in his ear a million times and tell me it's normal..I have no faith in doctors anymore..how sad..it's getting really out of hand and I can't take it anymore...if anyone could respond to me with anything that I can do or tell the docs without them thinking it's normal that would be great...

Thanks!!

Hi- I have had symptoms that sound quite a bit like yours. At first Dr's tried to say that I had regular TN but when I would read up on it I thought... some of it sounds like me and some of it doesn't.Then after a year an ENT surgeon mention Geniculate Neuralgia. The diagnosis says people will complain of an, "ice pick," in the ear sensation -mine(like yours) is sometimes so cold it is hot...like when your finger sticks to an ice cube. It was like the heavens opened up and I was no longer alone. The people that are diagnosed with this also tend to fit my profile...twenties-thirties, female, etc. Let me know what you think...Lindsay

Bassetcase · 11-18-2008, 08:36 AM

Hi PainSucks, Yes it does. I searched through a lot of info and forum postings before I found anything like the ear pain that we have. For years my docs insisted I had an inner ear infection. After two MRI's and three opinions they concluded there was no other diagnosis so they agreed it was TN. I asked My current Neuro about the Geniculate and he says oh, yeah it may be, but it is all the same as it is all connected.

I'm not sure if my old posts are here, but if you go back and look for mine I gave a lot more detail in my first posts. I take tegretol when I have an episode, but it puts me out of service for about 24 hrs. I have one of those herbal therapy type heat bags that I heat in microwave and lay with it on my ear and that helps more than anything else, but I haven't come up with anything that works for me when I am at work. They should make heated ear muffs - I think I will do a search and see if such a thing exists. I don't really think the tegretol even helps.

I hope things get better for you.

Rhonda

Quote:

Originally Posted by painsucks

Hey I'm a new memeber who's confused and in pain...I've been having a terrible stabbing pain in my right ear that keeps re-occuring about once a week, it just keeps happening more often and it's beginning to effect my life .. after seeing a bunch of random doctors who didn't help I decided to do some research...Trigeminal Neuralgia is the only thing that sounds exacty what has been happening to me..I'm sorry that anyone has to go through this kinda pain but I'm kinda glad I'm not the only one...I was just wondering if anyone could help me with what exactly I should bring up to the doc next time I go in? I was just gonna print off info from a site and shove it in their faces lol ...this one has lasted about 2 days now..and it started right after I went to the dentist and had to keep my mouth open for about an hour..sometimes it just comes outta nowhere and I can't move or talk without almost passing out from the pain or it just throbs constantly.. and i cant usually touch my ear at all or anywhere near my ear or cheek...it feels like my ear drum is about to burst when it gets that bad..I usually just use a hair dryer to dull the pain sometimes.. a doc once told me that I had a narrow ear canal and that it was normal and that all I had to do was pop my ears and I'd be fine...I'd like to see him get a hot needle jammed in his ear a million times and tell me it's normal..I have no faith in doctors anymore..how sad..it's getting really out of hand and I can't take it anymore...if anyone could respond to me with anything that I can do or tell the docs without them thinking it's normal that would be great...

Thanks!!

welshdiamond · 09-08-2011, 08:04 PM

for 2 weeks been in agony pain in my ear down my left side my face along my jaw line and into my teeth , im only 32 too young for this , went the docd yesterday as been taking cocodamol n codeine and it wasnt touching the pain ..i woke yesterday morning and couldnt even talk , when i speak or any one talks its very high and sensitive , doctors has put me on amytriptoline and told me to go back in a few days , im due to go on holidays in 2 weeks , i asked if i could fly he said yes , will it be ok to fly and how can i get rid this pain as painkillers not touching it and the pain is constant x..... plz can some one reply as new to this site and this tn many thanks x

EE03 · 09-08-2011, 09:09 PM

Quote:

Originally Posted by welshdiamond

for 2 weeks been in agony pain in my ear down my left side my face along my jaw line and into my teeth , im only 32 too young for this , went the docd yesterday as been taking cocodamol n codeine and it wasnt touching the pain ..i woke yesterday morning and couldnt even talk , when i speak or any one talks its very high and sensitive , doctors has put me on amytriptoline and told me to go back in a few days , im due to go on holidays in 2 weeks , i asked if i could fly he said yes , will it be ok to fly and how can i get rid this pain as painkillers not touching it and the pain is constant x..... plz can some one reply as new to this site and this tn many thanks x

Sadly most of the medications which help TN pain need some time to build up in your system before you start to realize any pain relief. Try calling your doctors office and asking them if there is something that they can prescribe to give you relief sooner as opposed to later.

welshdiamond · 09-09-2011, 06:28 PM

Quote:

Originally Posted by EE03

Sadly most of the medications which help TN pain need some time to build up in your system before you start to realize any pain relief. Try calling your doctors office and asking them if there is something that they can prescribe to give you relief sooner as opposed to later.

they now given me amytriptoline , take before i go to bed 1 a night to start off , tried it and taken neurofen inbetween , but i think the pain is making me take to many , i hate tablets but what else can i do ?

EE03 · 09-09-2011, 08:58 PM

Quote:

Originally Posted by welshdiamond

they now given me amytriptoline , take before i go to bed 1 a night to start off , tried it and taken neurofen inbetween , but i think the pain is making me take to many , i hate tablets but what else can i do ?

Get yourself a pill dispenser, one that has a compartment for each day of the week and fill it with the days allotment of pills. At least it will keep you on track as to how many you take each day and prevent you from overdoing it. These meds can cause serious problems if you take too many/few at a given time. Please read up on them and keep yourself informed about them.

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