Trigeminal Neuralgia Pain Questions
 

Hello there. I am a new member. I was told today that it may be possible that I have developed trigeminal neuralgia. From the symptoms I
am reading about, I have them all. However, has anyone experienced the same pain in the head? I am getting the same pain in my head as well. Thanks

Hi DanielleP,

Sorry that you are in pain...I'm new to this forum and TN as well. I have had a sharp pain that runs across my head as well. Thank God it only last a few seconds. Normally though, I am just having the pains in my face along my cheek. It seems as though I am actually having it on both sides these days! Dang it!
Everyone must be doing well that usually hangs out on this board...Great for them! I'm sure over the next few days someone will drop in with some advice for you.

Welcome to the board.
Melissa

DanielleP Welcome to NeuroTalk and the T.N. forum sorry it is over such pain but we are glad your here.I also applogize for not seeing your post sooner.
I have talked with many t.n. people and yes some do get the pains of T.N. in their head. there is 3 branches one branch above the eys ...one below the eye and the third goes to lower jaw. so depending on which branch or branches are affected the pain will be in diffrent areas. many have bilateral..on both side. there is also O.N. and if ya give me a second i will post the link to that forum we have here.
http://neurotalk.psychcentral.com/forum105.html
You may want to visit there and post your questions there also because the more info you get the better informed and the more power you have.
do not forget to check out the stickies and all the info at the top of this room and the fourm I gave link to.
and pleaese keep us updated on how things are going for you. your not alone and we help and support eachother like a family here . :grouphug:
Keeping you in my thoughts and I send low pain wishes.
PEACE
BMW

owwww....
 

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!!

Yes, mine started out with what I thought was a Migraine headache and found out that it obviously wasn't. So, I think it depends on where we perceive are pain is located. Like it can feel deeper than it actually is. It kind of mimics a Migraine in the fact that it is usually located on one hemisphere/side. I hope this helps.
Hope you feel better soon!
~Rachel

Hi, I was just trying to figure out if you can get TN on the other side of your face? I'm on tegratol which has taken the pain away on my left side but now I am experiencing if on my right side - the pain is intense but not as sharp because of the tegratol. Any thoughts - advice for me?
Thanks,
Sue:

I'm so sorry to read about the pain that you're going through right now, but I see that you're a new member to NeuroTalk Sues, and I wanted to welcome you to the site.

I hope that you get the advice that you seek, and if there's anything else we can do, please let us know.

.......... http://i50.photobucket.com/albums/f3...welcome-12.gif

Hi Sue,

Yes, you can end up with TN on both sides. I have MS which is a demylenating disease, so that is why I am starting to have it on both sides (my body is attacking the myelin sheath around those particular nerves). I think that anyone can get it on both sides though. You should consult with your neurologist, maybe he/she needs to up your dosage of Tegretol to get things back to normal for you.
Sorry if I'm not much help!
Hope you get it under control soon.
Melissa

TN
 

Hi y'all, It is six oclock here in Kansas and I wanted to write this before I start chores.
Although rare, you can have TN on both sides of the face. The sudden onset of TN for me has been on my left side, although it attacked every ounce of my
existence. It riddled me and spit me out.
I have found that there are Doctors out there that don't really know much about TN. When I went to the E.R. ( one time too many) the physician copied
the brochure I took out of my purse about Balloon compression.This is when the neurologist would insert a needle through the cheek to the base of the skull
and actually try to destroy the trigeminal nerve. Of course you are put to sleep
before this procedure occurs. I had three of these after my first microvascular decompression failed.
Find a neurologist that is perferably a surgeon, as they should have a bit more knowledge or experience with tic deloureaux. I saw two neurologists
before going to Mayo clinic in Rochester Minn. where I had two more brain surgeries, back to back. The last one having the trigeminal nerve severed,
leaving that side numb. Unfortunately I have the most dreaded complication of MVD' s, called Anesthesia Delorosa. This is a pain that no medicine can
touch and no surgery can help. I take 25 pills in a single day but still have pain 24/7. It is not the scary pain like TN but it is relentless. It does what it wants no matter what. The lightening like streaks of T.N. would scare me so
bad that I couldn't eat, talk , move. I became dehydrated and lost weight.
I guess when a person reads different info about T.N., it is not from actually listen to someone who has been through it.
I had one of the worst cases that Mayo clinic had ever seen. Not too many people know PAIN like that. I was in the pain unit and kept being told To breathe as I would barely take a breath.
These were the darkest days in my life and We ( my husband and I ) make the two hour trip to Kansas city to see my psychologist. His program is for people who have cronic pain and how to cope with it day after day after day
after day.
I really hope you will be put on a med that works for you. Try seeing a neurologist if possible. Ask a lot of questions until you are satisfied with the answers. Remember, the Doctor is working for you.
Doodle bug7................remember...friends are like stars, you don't always see them, but you know they are there.

I've been so wrapped up in the ON and spine problems I'm dealing with that I missed this. I have TN on both sides and mine is a mix of classic(TN1 - lightening bolt type pain) and non-classic type(TN2). All three branches on both sides are affected. Every neurologist I saw says its rare, but there seems to me, to be a lot of people who have it. Anyway, the TN2 is unrelenting and varies in the way it presents itself. It can escalate up to a 10 on the pain scale, but then it receeds and fluctuates between 4-7. This type of pain, in my case, is unrelenting and it wears me down. Again, I'm sorry I'm responding so late. I hope this info helps you in some way, but you really need to see a neuro, preferably one who has experience treating the conditon. Take care, ellena

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??

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 :hug::hug::hug:
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. :hug::hug::hug:
Low pain at you
PEACE
BMW

TN Pain Questions
 

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

Geniculate Neuralgia
 

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

Geniculate Neuralgia
 

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

neuralgia and constant pain
 

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.

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.