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Author: Subject: Trigeminal Neuralgia

Zen Peach





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  posted on 7/22/2008 at 08:07 AM
Since these forums usually have folks with experiences of all kinds I thought I would throw this topic out there.
Has anyone had/have Trigeminal Neuralgia? I was up most of the night reading about it and have to go to the doctors again today after I went yesterday for all sorts of poking and xrays and as the diagnosis gets narrowed down this is what it is pointing to. I went to the dentist to rule out any dental problems, so I know it is not from that.
I did learn that vicodin can not even touch the pain! I have taken a vicodin every 4 hours since yesterday and all it does is ease up the pain a little.

 

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Zen Peach



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  posted on 7/22/2008 at 08:17 AM
((((((((PAM))))))))))
 

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  posted on 7/22/2008 at 08:29 AM
Pam.... I do not know to much about this... but Please keep us informed after your Dr.'s visit... I'm sorry to hear about your pain... Get Well and I'll be thinking of you...

Good Vibes sent your way )))) PAM ((((

 

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Zen Peach



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  posted on 7/22/2008 at 08:38 AM
Oh dear, I don't know anything about this but I do know if its causing that much pain and the meds aren't helping I hope you get this remedied quickly.

 

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  posted on 7/22/2008 at 08:39 AM
Pam, I don't know of anyone that has it, but I work in a hospital and there's definitely people that have heard/know of it. How intense has the pain been?

Hugs and good vibes to ya, sis.

 

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  posted on 7/22/2008 at 08:47 AM


I was just reading about it Pam. I hope it's not what you have, it does sound very painful.

I'm sorry your in such pain.

We willl be Praying for good results from the Doctor visit.

 

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  posted on 7/22/2008 at 08:50 AM
It feels like I have an ice pick shoved down through my ear drum and through the hinge of my jaw and the slightest movement sends the searing pain rippling from that center point out and covers about a quarter of my head. Not much sleep for a couple of nights now. Some parts of my face are numb and others are tingling and the constant ache is there. The whole area is swollen and uncomfortable.

 

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  posted on 7/22/2008 at 09:03 AM
A quick look shows that there are a good number of trigeminal neuralgia specialists throughout the country. There seems to be quite the host and mix of medications that are used to treat it.

I'm so sorry...this condition blows (obviously). Don't forget to be your own advocate when you go back to the doctor. Ask as many questions as you can think of (if you did research and any questions arose from that, write them down and take them with you). If you don't like the answers, ask for a referral.

Hugs of pain relief to you...no one should go through this.

 

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  posted on 7/22/2008 at 09:05 AM
I'm sorry you're going through so much pain, sweet angel. I don't know anything about that affliction I'm afraid, but I hope you're pain-free soon.

Your friend,

Randy

 

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  posted on 7/22/2008 at 09:26 AM
Leo and I both had a similar pain about a month ago. His doctor looked in his ear and said it looked a little murky but he didn't think it was infected so he sent him for an MRI of his brain and all sorts of tests and they didn't find anything. It finally went away by itself. I put a couple of drops of peroxide in my ear twice a day and it went away. But Friday it was back with a vengeance. I had one of the PA's where I work check out my ear and sure enough it was infected. He gave me a scrip for augmentin and cipro ear drops. So far, the ice pick hasn't come back but I still have this odd feeling in my ear. Hopefully the antibiotics will clear it up.
I've had two coworkers and one patient who was hopitalized within the last month with the same exact symptoms. I don't know where you live but we're out on Long Island.
First a nurse practioner looked at my ear and really couldn't see anything. Then the PA looked at it and said it was infected. I know this sounds too simple, but I'd go to an ENT and let them check out your ear.
By the way Alleve and a darvocet seemed to help with the pain. Both are antinflammatories.
I did the same thing as you and went online and read about ear infections. Most of them go away by themself as was the case with Leo. I thought I had cured mine with the peroxide which is what my Mom always did when we got swimmer's ear.
Hope you feel better soon. I feel your pain.

T

 

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  posted on 7/22/2008 at 09:38 AM
Good grief, Pam....man, I hope they find out what is going on and get it fixed. Terrible news.
 
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Zen Peach



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  posted on 7/22/2008 at 09:55 AM
Pam comfort vibes to you.

 

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Zen Peach



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  posted on 7/22/2008 at 10:09 AM
I went online and found this for you Pam

Support website

Definition

Imagine having a jab of lightning-like pain shoot through your face when you brush your teeth or put on makeup. Sound excruciating? If you have trigeminal neuralgia, attacks of such pain may occur frequently.

You may initially experience short, mild attacks, but trigeminal neuralgia can progress, causing longer, more frequent bouts of searing pain. These attacks can be spontaneous or provoked by even mild stimulation of your face. Trigeminal neuralgia affects women more often than men, and it's more likely to occur in people who are older than 50.

Because of the variety of treatment options available, having trigeminal neuralgia doesn't necessarily mean you're doomed to a life of pain. Doctors usually can effectively manage trigeminal neuralgia with medications, injections or surgery.


When to seek medical advice

If you experience facial pain, particularly prolonged or recurring pain or pain unrelieved by over-the-counter pain relievers, see your doctor.


Causes

The trigeminal nerve carries sensation from your face to your brain. In trigeminal neuralgia, also called tic douloureux, the nerve's function is disrupted. Usually, the problem is contact between a normal artery or vein and the trigeminal nerve, at the base of your brain. This contact puts pressure on the nerve and causes it to malfunction.

Trigeminal neuralgia can occur as a result of aging, or it can be related to multiple sclerosis or a similar disorder that damages the myelin sheath protecting certain nerves. Less commonly, trigeminal neuralgia can be caused by a tumor compressing the trigeminal nerve. In other cases, a cause cannot be found.

A variety of triggers may set off the pain of trigeminal neuralgia, including:

* Shaving
* Stroking your face
* Eating
* Drinking
* Brushing your teeth
* Talking
* Putting on makeup
* Encountering a breeze
* Smiling

Treatments and drugs

Medications are usually the first treatment for trigeminal neuralgia, and many people are successfully treated with medication and require no surgical treatment. However, over time, some people with the disorder eventually stop responding to medications, or they experience unpleasant side effects. For those people, injections or surgery provide other treatment options.

Medications
Medications to lessen or block the pain signals sent to your brain are the most common initial treatment for trigeminal neuralgia.

* Anticonvulsants. Carbamazepine (Tegretol, Carbatrol), phenytoin (Dilantin, Phenytek) and oxcarbazepine (Trileptal) are the most common anticonvulsant medications used to treat trigeminal neuralgia. Other anticonvulsants include lamotrigine (Lamictal) or gabapentin (Neurontin). If the anticonvulsant you're using begins to lose effectiveness, your doctor may increase the dose or switch to another type. Side effects of anticonvulsants may include dizziness, confusion, drowsiness, double vision and nausea. Anticonvulsants have been linked to an increased risk of suicidal thoughts and behavior, so be sure to monitor your mood closely if you're taking an anticonvulsant for the first time. Also, carbamazepine can trigger a serious drug reaction in some people, mainly those of Asian descent, so genetic testing may be recommended before you start carbamazepine.

* Antispasticity agents. Muscle-relaxing agents such as baclofen may be used alone or in combination with carbamazepine or phenytoin. Side effects may include confusion, nausea and drowsiness.

Alcohol injection
Alcohol injections provide temporary pain relief by numbing the affected areas of your face. Your doctor will inject alcohol into the part of your face corresponding to the trigeminal nerve branch causing pain. The pain relief isn't permanent, so you may need repeated injections or a different procedure in the future.

Surgery
The goal of surgery for trigeminal neuralgia is either to stop the blood vessel from compressing the trigeminal nerve, or to damage the trigeminal nerve to keep it from malfunctioning. Damaging the nerve often causes temporary or permanent facial numbness, and with any of the surgical procedures, the pain can return months or years later. Surgical options include:

*Microvascular decompression (MVD). Instead of damaging the trigeminal nerve, MVD involves relocating or removing blood vessels that are in contact with the trigeminal root, and separating the nerve root and blood vessels.

During MVD, your doctor makes an incision behind the ear on the side of your pain. Then, through a small hole in your skull, part of your brain is lifted to expose the trigeminal nerve. Any artery in contact with the nerve root is directed away from the nerve, and the surgeon places a pad between the nerve and the artery. If a vein is compressing the nerve, the surgeon typically will remove it. If no artery or vein appears to be compressing the nerve, your surgeon may sever the nerve instead.

MVD can successfully eliminate or reduce pain most of the time, but pain can recur in some people. While MVD has a high success rate, it also carries risks. There are small chances of decreased hearing, facial weakness, facial numbness, double vision, and even a stroke or death. Since MVD doesn't damage the trigeminal nerve, most people who have this procedure have no facial numbness afterwards.

* Glycerol injection. During this procedure, called percutaneous glycerol rhizotomy (PGR), your doctor inserts a needle through your face and into an opening in the base of your skull. The needle is guided into the trigeminal cistern, a small sac of spinal fluid that surrounds the trigeminal nerve ganglion where the trigeminal nerve divides into three branches and part of its root. Images are made to confirm that the needle is in the proper location, and then a small amount of sterile glycerol is injected. After three or four hours, the glycerol damages the trigeminal nerve and blocks pain signals. Initially, PGR relieves pain in most people. However, some people have a later recurrence of pain, and many experience facial numbness or tingling.

* Balloon compression. In percutaneous balloon compression of the trigeminal nerve (PBCTN), your doctor inserts a hollow needle through your face and into an opening in the base of your skull. Then, a thin, flexible tube (catheter) with a balloon on the end is threaded through the needle. The balloon is inflated with enough pressure to damage the nerve and block pain signals. PBCTN successfully controls pain in most people, at least for a while. Most people undergoing PBCTN experience some facial numbness, and more than half experience temporary or permanent weakness of the muscles used to chew.

* Electric current. Percutaneous stereotactic radiofrequency thermal rhizotomy (PSRTR) selectively destroys nerve fibers associated with pain. While you're sedated, your doctor places a hollow needle through your face and into an opening in your skull. Once the needle is positioned, an electrode is threaded through it to the nerve root. You're then awakened from sedation so that you can indicate when and where you feel tingling from the mild current pulsed through the tip of the electrode. When the neurosurgeon locates the part of the nerve involved in your pain, you are returned to sedation. Then the electrode is heated until it damages the nerve fibers, creating an area of injury (lesion). If your pain isn't eliminated, your doctor may create additional lesions. Almost everyone who undergoes PSRTR has some facial numbness after the procedure.

* Severing the nerve. A procedure called partial sensory rhizotomy (PSR) involves cutting part of the trigeminal nerve at the base of your brain. Through an incision behind your ear, your doctor makes a quarter-sized hole in your skull to access the nerve. Because it cuts the nerve at its source, your face will be numb permanently. In some cases, instead of cutting the nerve the surgeon will choose to traumatize the nerve by rubbing it.

* Radiation. Gamma-knife radiosurgery (GKR) involves delivering a focused, high dose of radiation to the root of the trigeminal nerve. The radiation damages the trigeminal nerve and reduces or eliminates the pain. Relief occurs gradually and can take several weeks to begin. GKR is successful in eliminating pain for the majority of people, but sometimes the pain may recur. The procedure is painless and typically is done without anesthesia. Because this procedure is relatively new, the long-term risks are not yet known.


 

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Zen Peach



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  posted on 7/22/2008 at 10:17 AM
I can't take the anti-inflammatories because of that ulcer problem I found I had last year which I regulated with diet and am off the meds for that, so I don't want to try those again!

This whole thing started a couple of years ago when I thought I had an earache. The doctor never sees anything in there though, so I get the antibiotics for 10 days and it goes away but it is now happening more often and it is obviously something more than an earache. This is the worst pain I have ever had and I went through natural child birth if that gives any kind of example. I went to the dentist first this time because the last two times I went for the ear check up they sent me to the dentist who sent me back to the doctor. UGH...

Thanks for the good vibes everyone. I appreciate them a bunch.

 

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  posted on 7/22/2008 at 10:19 AM
I sure hope you're feeling better soon, Pam.

 

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  posted on 7/22/2008 at 10:46 AM
Oh yea... I live the nightmare!!
Diagnosed as Cluster Headaches years ago, I'm lucky in the fact that I'm not cronic(everyday). Mine comes and goes, but when it hits, there is no worse pain in the world. Found a site www.clusterheadaches.com, really helped. I use pure oxygen, 15ml per sec., seems to ease the pain. For the real bad ones, Immitrex injection. Immitrex is a miracle and takes the pain away in minutes. If you want to talk I'm always available. I can say, "I understand"

 

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  posted on 7/22/2008 at 10:52 AM
(((((HUGS))))) to you Pam ... hoping for an accurate diagnosis and swift and successful treatment.

 

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  posted on 7/22/2008 at 12:26 PM
Pam, I'm so sorry that you are going through this. Sending good thoughts your way...
 

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  posted on 7/22/2008 at 12:56 PM
First I've heard of Trigeminal Neuralgia - had to go out to the internet to find out what it was. Someone here mentioned cluster headaches and Immetrix - if you do get a migrane type of diagnosis I can say that this med has helped my sis and another friend out a lot with their headaches.

Pam - hope you are able to get a diagnosis and some type of treatment plan to get this resolved soon. Sounds very painful and I know it's a drag to live with pain. Healing vibes being sent your way!

 

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  posted on 7/22/2008 at 01:14 PM
So sorry to hear this Pam. You will find a treatment that works. I just hope you find it soon. Living with pain is so difficult. Sending positive thoughts out to you. Please let us know how you are doing.

My daughter has problems due to an accident and the pain becomes unbearable sometimes. Then she gets her Dad to give her a shot of Immetrex. It works very well.

[Edited on 7/22/2008 by ruthelane]

 

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  posted on 7/22/2008 at 05:57 PM
oh yea, vicodin and other narcotics DON'T work, in fact sometimes they make it worse. I've met alot of people who swear by caffeine and taurine(Redbull). They say if they chug, and I mean chug, a Redbull as fast as they can it really helps? Others swear by RC seeds or morning glory seeds? There is even research being done that leads to the belief that magic mushrooms, in small doses at timely intervals has been said to keep the pain away? I don't know, there is a ton of stories and speculation, all I really know is my Nuero told me they don't really have any answers. Lucky us.
 

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  posted on 7/22/2008 at 06:12 PM

Healing vibes to you, Pam.

 

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  posted on 7/22/2008 at 07:47 PM
Pam, Have they ruled out TMJ ?
I had that about 1992, and it sounds a lot like TMJ.
The dentist can check using a fluoroscope, and there are treatments for it
If that's what it is, mouth braces, Valium, and exercises help knock it down.

PS: You know I want you to get better, so take care.

 

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  posted on 7/23/2008 at 08:06 AM
4 hours with various doctors yesterday. My doctor sent me to the optomologist after she was finished checking out the swelling and my ear and asking her questions. She was concerned about the temporal artery. I went to the other doctor and he did a bunch of tests and all we found out was I don't have any depth perception in my left eye. He got my records from my last eye test about 8 months ago and the depth was fine. I got all the eye drops for dialating the pupils and then I was sent to the hospital for blood work. Now I am waiting to hear what happened with the blood work and then I have to go have the MRI done. If the MRI shows there is something wrong with the temporal artery they want to do a biopsy, but I said I want to see a neurologist before they biopsy anything.
I have been telling them all that my mother was an epileptic and she had aneurysms hoping to just get to a neurologist as soon as I can but the way insurance works I have to have the referral in order to be covered.

Jerry, I will mention TMJ again. I had several xrays at the dentist the other day already and he said everything he had to check was fine.

Coffee and mountain dew seem to work better than the vicodin, so I have been sipping those. I finally got some sleep last night after taking a vicodin and 2 tylenol PM's. 3 hours of sleep in a row until the pain creeped back up on me.

We will see what today brings...thanks for the good vibes.

 

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  posted on 7/23/2008 at 10:24 AM
That sounds horrible, Pam. I wish you a quick resolution.

 

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