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Trigeminal Neuralgia?

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Posted 5/30/2010 11:00 PM (GMT 0)
Hello, I am new to this site, so hello to you all.
I am interested to know if anyone has experienced symptoms similar to mine, I would love to get some feedback.
Six years ago my tongue started to tingle and sting on the right side, gradually it worsened and it has now settled in my left jaw, tooth and tongue. I experience pain and a crushing/pulling sensations in my jaw and tongue 24/7, it is horrible. I no longer know just where to put my jaw, it feels like it is in a very tight grid, relieved only momentarily by relaxing it.
I am a 53 year old mother of four, so it has been tough going. I take Lyrica 150mg twice a day, Cymbalta in the morning and a Xanax tablet at night to relax the nerve enough to get off to sleep. I sleep well thankgoodness, but it all starts again when I wake.
The Pain Psychologist tells me that there is no cure in sight, and that it will not go away, only in the case of some miracle! Relaxation and medication seem to be the only ways to help reduce the symptoms.
Anyway, thank you for reading this, maybe someone knows what I am talking about.
Radles
Posted 5/30/2010 11:28 PM (GMT 0)
Hi Radles,

Welcome to HW. This is a fantastic place to come for support and advice, or just to vent about your pain. The great thing is that everyone here understands what you are going through, even if they don't have the same pain. We all know pain & how drastically it can effect so many aspects of our lives.

I don't have trigeminal neurolgia, but I do have issues which involve the trigeminal nerve. A neurosurgeon referred to it as trigeminal neuropathy (because my ophthalmic branches of my trigeminal nerve are effected), although that certainly doesn't cover everything that I have going on (I'm really still diagnosis-less).

I have pain behind my right eye that developed after a severe injury to the eye & deep within the eye socket. I'm just 22. My pain started 3 1/2 years ago, and as of yet I have not found any real relief. I don't sleep at all because of the pain & no medications have helped significantly (and I think I've been on them all). Even pain medication doesn't make much of a difference. Only after taking what is considered "massive doses" do I begin to notice any difference. I do take a considerable amount of dilaudid at night, but other than that it's not worth the side-effects. However, my resistance to medication is probably due to a genetic defect that I have in some of my liver enzyme pathways.

So far the only think that has made any serious difference in the pain was a retrobulbar lidocaine injection (basically a nerve block behind the eye), but unfortunately, that procedure is very dangerous & thus is diagnostic only. No other nerve blocks have helped (I've had multiple stellate ganglion blocks and sphenopalantine blocks).

On Friday I was actually supposed to begin a trial of a peripheral neurostimulator, however due to hospital/insurance issues beyond my control, it got canceled at the last minute. Hopefully I'll find out Tuesday when the new dates for the surgeries will be. But basically they are planning on attaching electrodes to the ophthalmic branches of the trigeminal nerve which will stimulate the nerve & hopefully interfere with the pain signals being sent to the brain. A neurosurgeon who is considered one of the world authorities on trigeminal neurolgia and trigeminal neuropathy is performing the surgery (I was referred by my neurologist). You may want to consider googling trigeminal nerve stimulators. The basic principle is very similar to spinal cord stimulation, except in the case of peripheral nerve stimulators, such as a trigeminal nerve stimulator, the electrodes are placed on peripheral (rather than spinal) nerves & the battery is implanted in the chest, under the collar bone.

I hope you'll find some of this helpful.

hugs,
Skeye
Posted 5/31/2010 12:32 AM (GMT 0)
Hi Radles,

Welcome to the forum.  Like everyone else, I'm sorry you have CP, but glad you were able to find our site. 

I have no particular knowledge of your pain issue and no way that I can directly relate, but I do have Chronic Pain (CP) and can understand the stress and toll that takes on us personally. 

Skeye is a very informed and very pleasant person to speak with.  I noticed she gave you quite a bit of information regarding a similar experience and I hope this helps a bit.  Perhaps another will come alone who knows exactly what you are going through and can provide the information you need.

The support here is great and the people are warm and comforting, so please stay with us for a while and we can lean on each other for support.

All the best to you!

Posted 5/31/2010 7:36 AM (GMT 0)
Thank you Skeye and retiredmom, I greatly appreciate you replying to my letter, and I am so glad to have found this site. It feels great to finally talk to people who do know what you are dealing with.

I feel for you re your plight Skeye, I hope all goes well with the Neurosurgeon. I have not read anything on Neurotransmitters but will google it, thank you.

Attending the pain clinic does make me feel rather 'at the end of the road', but I do hold out hope that things will get better.

I live in Australia, hence the hours of my posts.

Talk soon.

Radles
Posted 5/31/2010 8:18 AM (GMT 0)
Thank you Skeye and retiredmom, I greatly appreciate you replying to my letter, and I am so glad to have found this site. It feels great to finally talk to people who do know what you are dealing with.

I feel for you re your plight Skeye, I hope all goes well with the Neurosurgeon. I have not read anything on Neurotransmitters but will google it, thank you.

Attending the pain clinic does make me feel rather 'at the end of the road', but I do hold out hope that things will get better.

I live in Australia, hence the hours of my posts.

Talk soon.

Radles
Posted 5/31/2010 1:53 PM (GMT 0)

Hi there and welcome.  I have severe TMJ to the point that my joints have disinigated and even when talking I make a 'crunching sound'.  I was told by an oral surgeon that the trigeminal nerve is 25 miles long...seems impossible but that's what he told me.  If inflamed it can cause pain in every area of the face, neck, jaw, ears, back, nose, teeth, gums roof of the mouth, tongue and eyes.  I have never been dx'd with TN, but I certainly have felt the pain from the nerve...the worst being in my eyes, teeth and the hard palate.  Apparently, the nerve becomes inflamed from chronic bruxism, which I don't realize I am doing.  In sleep, I chew raw spots on the inside of my cheeks.  I had a mouth guard made but I couldn't wear it...gave me cankor sores.  Wish I could help more but all I can do is relate to the pain!

huggies

Donna

Posted 5/31/2010 10:07 PM (GMT 0)
Hi Radles
Sorry you have to meet us all for this reason , but welcome to a great caring group of folks. I too am one who suffers from damage to the trigeminal nerve. Mine started 10 years ago after a bout of shingles to the right side of my face affecting the ear, eye and entire head( or thats the latest dx, no one really knows for sure.) As with Skeye, theres very little that seems to help nerve pain. I do have a stimulator but mine is attached to the supraorbital nerve in the right side of my forehead. I had it implanted in May of '05. Recently if someone had asked me if "I knew then what I know now" would I have the implant, I would have to say no. I guess it works for some pain but really hasn't been much help for ine. I did it because I was in so much pain that I was willing to go through anything if someone could promise some relief. Now I am seeing a different doctor , taking narcotic meds ( embeda and norco) as well as lyrica, just tapered off topomax as well as ambien for sleep. Most nights the pain wakes me but at least the ambien puts me to sleep for a few hours.
Currently I am seeing a new doctor who sends me for physical therapy as well as doing trigger point injections, occipital nerve blocks, and cervical facet blocks. What it all boils down to is trying every thing you can and hoping something is going to help. TM is a terrible disability to have and I feel for you.Any idea what brought it on for you?
Can't offer much more than a cyber shoulder to lean on and hopes for a better tomorrow.Let us know how you are doing and where you are on your path to finding relief.
We are here for you
Catahoula
Posted 6/1/2010 12:01 AM (GMT 0)
Hi Radles and welcome to Healing Well's chronic pain forum. I am sorry that you have to be here but very glad you found this place. I see you have had a couple already pop on that has some experience in what your condition is, that always makes a person feel better to get to talk with someone that knows. I know little about the condition except what some of the others here have gone thru and its one of those deals you would not wish it on your worst enemy. It is also helpful to know you are not alone with this and everyone here suffers with CP. CP sure has a way of making a person feel so isolated.

 

With it being a holiday weekend it can get a little slow but more and more people will pop on later and say hello and welcome aboard. Anyway I wanted to say hi and please keep posting and let us know how you are doing.

Posted 6/1/2010 1:27 PM (GMT 0)
Hey Radies , welcome and sorry your having so much pain . You don't mention a diagnosis , only a Pain Therapist saying theres no cure in sight , but cure for what ? Did I miss that ? I'm confused about this aspect of your care , what does your doctor or dentist say could be causing these sensations ? Best of luck , I do hope you find some answers . Mikel
Posted 6/2/2010 10:23 AM (GMT 0)
Hello,

Thank you all so very much for your kind replies, I feel so thankful to have found such a supportive and caring group of people, it feels so good to talk and be heard.

Mike, sorry, I may not have expressed myself too well, first time nerves! I asked the pain specialist just what my diagnosis was, he told me 'Trigeminal Neuralgia', I think it was just a matter of it being pain caused by the Trigeminal nerve, rather than the diagnosis of what we all know to be 'Trigeminal Neuralgia'. I suffer from an unrelenting pulling, tingling, burning sensation in my tongue and jaw, it is like having your jaw pulled every which way and you can't figure out where it belongs anymore. It is horrid, but it is not the pain so much as the strange sensations that are such a struggle, as stinging as the pain is!

I often wonder if pain in the mouth is different from pain elsewhere ie as in do you get pain in your hip, or pain and strange sensations together? I feel for your plight, it is good to talk to you.

R
Posted 6/2/2010 1:47 PM (GMT 0)
Hi Radles and welcome! I don't have much information for you as I don't have the same pain that you do. I would like to offer my support though. I guess when it comes right down to it pain is pain and we can all relate to that. I know you have already gotten alot of information from the wonderful members here and I am sure you will get more. This is a great place to be, I hope you keep coming back. Take care.
Posted 6/2/2010 10:21 PM (GMT 0)
Thank you Shannon. I must say I overwhelmed by the support you get on this site, it is wonderful.

You are right, pain is pain, and reading about others experiences and treatments is so helpful. Is Fibromyalgia something that you can recover from, will it subside? I sympathise with your chronic daily headaches, I can only imagine how difficult it must be for you.

Regards. Giselle.
Posted 7/1/2010 4:42 PM (GMT 0)

Catahoula:  I also have damage to by tregeminal nerve on the upper right side of my face and head due to shingles.  It will be 3 years this mid-July.  I have never known such pain.  I take Cymbalta, Topamax, Vicodin, and MsCotin.  I have a procedure every 6 months (you can only have it done every 6 months, or my insurance only allows it) where they go in and burn the nerve, which will give me 60% relief for approximately 2 months.  Then I  have nerve blocks done once a month after that to maintain until the next procedure.  During this time, I am on and off the MsCotin and reduce the Vicodin (but never completely off), but never off the other prescriptions.  My doctor just mentioned to me the Boston Scientific Stimulator Implant (usually for the spinal cord).  Interesting that you indicated you would not do an implant again.  Did it really not help at all?  Does anyone know of any specialist out there that can shedd some light on this condition? 

Posted 7/1/2010 7:49 PM (GMT 0)
trigempain-
sorry to have to meet you this way. I am also told that I had shingles which is what caused the pain though there was never any rash. I have not heard of the procedure you are speaking of of burning the nerve. I've had the cryoprobes which supposedly freeze the nerve as well as all the block. This is something new to me, do say more.
I also have not heard of the BostonScientific Stimulator. Mine is the supraorbital nerve stim made by medtronics. I've been on the cymbalta (125mgs) as well as topomax (100mgs 2x's a day) tried the oxycontin. Norco is another name for vicoden.
No, I would not do the implant again, even though a year ago May I had a trial occipital nerve stim ( horrible experience !!!). I just don't see that the nerve block is relieving any pain and for what I've been through ( insurance NOT covering, doctors refusing to see me because of the implant, and just pain fro the actual stimulation) I would not do it again if I had the choice. Thats just me. Skeye, on the forumn is having a stim implanted and sounds very confident that it will help. I think its all individual. I wouldn't tell you not to consider it, I'm just saying it didn't work for me.
catahoula
Posted 7/1/2010 8:29 PM (GMT 0)
Hello Catahoula, thank you for getting back with me.

The procedure is called Radiofrequency Ablation.  They insert a small tube right by my ear and enter a laser to go in and burn the nerve.  You must be awake (but they put you in la la land) so you can let them know they have reached the right area of the nerve. For the first 1-2 weeks afterwards it can be very painful from the swelling and pressure setting off significant shocks, but the past couple of times I had this done I then had a decent amount of relief for approximately 2 to 2.5 months.  This time I am not being so lucky.  It has only been a month and the pain is already begining to increase. For some it will last up to 6 months.    I will have to talk with Skeye and see how the procedure goesand what stimulator is being implanted.  Maybe some advancement has been made in 5 years.  I have never been on oxycotin, only the Morphine based cotin.  Have you tried anything else that worked?  Why are you coming off the topamax?  (Besides the awful side effects?)  Is it not working for you anymore?  I tried the Lyrica, but it made my sick, so I switched to the Cymbalta.

I am sorry we must all meet this way, however, it is nice to talk/read with people who understand.

Posted 7/1/2010 8:48 PM (GMT 0)
Hi tregempain
...i'll have to mention the ablation to the doc ( if she calls me back...boy am I worried about being dumped!) Its the only thing I can think of that I haven't tried. I went off the topomax because it di nothing but give me aplasia..It was terrible, I couldn't think of the name for anything, memory was shot..just didn't help. The only med that worked is Actiq. Insurance paid for it for awhile, then 2 years ago they stopped paying for it if you don't have cancer pain. I was paying $2700 a month for it but finally went broke and ran up a $20,000 visa bill I am still trying to pay off. I'd give anything to have even one a day but at this point I just can't afford it. I had to be awake for the occipital nerve stim block. IT WAS HORRIBLE. They said they would control the pain but did not. I felt every movement and jab as he jabbed the scapel deeper and deeper through the tissue in the back of my neck. Hurt so bad I was crying on the operating table. Needless to say I am wary of having any other procedures. I had a colonoscopy and was told that they'd put me in lalaland as well but the the doc said she was "worried about giving me too much" medication because I was wearing a duragesic patch at the time ( nope, those didn't help either) I felt EVERYTHING and if you've ever been through that procedure, imagine it feeling the whole thing. Right now I just don't trust any doctor who says "don't worry, you won't feel a thing". I know that I have become resistant to meds now but there has to be something that can be done.I mean, these procedures take place in a hospital with all the equipment. I would think they would be able to ease the pain as well as monitor me. I am suppose to have surgery on my arm and shoulder again( had the surgery once but it failed) I told me doc there is no way I will ever go under the knife again.

catahoula
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