Chronic Pain Whatever the cause, support for managing long term or intractable pain.


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Old 04-11-2013, 02:04 PM #1
BeckyandDan BeckyandDan is offline
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Confused Chronic Atypical Face Pain

Hi, I am new here... don't know format, etc. but here goes... Have had unexplained face pain for years (10). Have seen several doctors, dentists and neurologists. Recently finally diagnosed atypical face pain.... great.... still pretty much unconclusive. Through the years have been on many, many meds with no releif just all the side effects. Am done with the meds but desperately want pain to be gone. Next week I see a team of doctors/specialist to see if I am a candidate for Motor Cortex Stimulation. This scares me. There's so much to go wrong. Has anyone had any experience with this for atypical face pain. If so, what do I need to know about it; what kind of questions should I be asking at my appointments; and finally, how do we determine "my" pain is really bad enough to go through this. As with everything, some days are much worse than others and on those bad days my answer is a definate yes... Please help me with questions and answers as time gets near I am getting more and more nervous, but ready for the pain to be history. Thanks.
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Old 04-13-2013, 11:13 AM #2
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Has anything been mentioned about Trigeminal Neuralgia? This sounds like it might be what you may have. Try looking up "Trigeminal nerve" above where it says "medical dictionary" at the top of this page. It will tell you more about the nerve and where it is located.

Also, try "Googling" Trigeminal Neuralgia and there are several listings for it. There is even a message board, I believe it's called "Healing Well" -- there were quite a few postings there about Facial Pain.

Evidently here, we don't have too many people suffering from it. God bless and please take care. Hugs, Lee
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Old 04-19-2013, 10:02 PM #3
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Hello BeckyandDan,

Welcome to NT !

I don't know much about the dx or treatments for atypical facial pain. I'm sorry that I can't help you there.

For any chronic pain syndrome though, I think it's a very individual choice about which treatments to undergo. Different procedures will have different risks. What possible effects I might risk would depend on the risk benefit ratio to me. Only you can know how bad this is for you.

I looked up motor cortex stimulation. I'd be mighty leery of having holes drilled into my skull too.

Get as much info as you can about the procedure and any other possible treatments that might be an alternative. It really stinks that you haven't gotten ANY relief from the meds you've tried. That sure does limit your options.

Best wishes for finding some relief.
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Old 04-22-2013, 02:59 PM #4
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Default motor cortex stimulation

Quote:
Originally Posted by BeckyandDan View Post
Hi, I am new here... don't know format, etc. but here goes... Have had unexplained face pain for years (10). Have seen several doctors, dentists and neurologists. Recently finally diagnosed atypical face pain.... great.... still pretty much unconclusive. Through the years have been on many, many meds with no releif just all the side effects. Am done with the meds but desperately want pain to be gone. Next week I see a team of doctors/specialist to see if I am a candidate for Motor Cortex Stimulation. This scares me. There's so much to go wrong. Has anyone had any experience with this for atypical face pain. If so, what do I need to know about it; what kind of questions should I be asking at my appointments; and finally, how do we determine "my" pain is really bad enough to go through this. As with everything, some days are much worse than others and on those bad days my answer is a definate yes... Please help me with questions and answers as time gets near I am getting more and more nervous, but ready for the pain to be history. Thanks.
Hi
i am in the same situation' same signs . no madics' no other treatments. nothing helps me.
i am also a candidate for motor cortex stimulation. still it"s hard to make up my mind.
any piece of information, statistic details, the chances, will help me.
please share with me as well the hopes, fears.
where and what is your clinic name?
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Old 11-22-2013, 02:21 PM #5
Barbara woolley Barbara woolley is offline
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Default Atypical facial pain

Hello! I have had atypical facial pain for 4years, following the extraction of a maxillary tooth. the local dentist, oral surgeon either wanted me to undergo further tooth extractions or a root canal. Fortunately, I found a pain management clinic at the University of Alabama pain clinic. as a med school grad of UAB, I had great faith and great results. The pain never goes away, bit is at least bearable. I hope someone can chat with me, it gets lonely not being able to talk with someone who understands. I do not want to burden my husband or my friends with the problem. Thanks.
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Old 01-06-2014, 05:19 PM #6
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I'm so sorry. I have Atypical Trigeminal Neuralgia. This happened after dental work. Many of my doctors have dx'd this as ATN. But, one just said nerve pain.

I use a compounded cream with the following in it: Gabapentin, Lidocaine and Capsacin. A special pharmacist makes the cream and I rub it on my face where the pain is at its worst about 4x a day. I also take Desipramine tablets (low dosage). It took a few weeks to kick in, but this combination works very well for me.

If you have tried many meds, it might be something to consider. I tried many meds and either they didn't work or the side effects were horrible.

It would involve you working with a doctor that was willing to work with a compounding pharmacist that was familiar with facial nerve pain...which hurts like "you know what."

There are others with your symptoms or those that are very similar...check out this website: Livingwithtn.org

Wishing you much pain relief and asap!
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Old 01-06-2014, 09:11 PM #7
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Question Trigeminal neuralgia

Hi, I don't have the atypical facial pain, but I do have Trigeminal neuralgia due to multiple Sclerosis and I do unbeatable how difficult it can be to deal with the pain. If in fact it is the TN as the other person stated, there are other options for this as they also stated.

The following information was copied from the Mayo Clinic's website.


Medications

To treat trigeminal neuralgia, your doctor usually will prescribe medications to lessen or block the pain signals sent to your brain.

Anticonvulsants. Doctors usually prescribe carbamazepine (Tegretol, Carbatrol, others) for trigeminal neuralgia, and it's been shown to be effective in treating the condition. Other anticonvulsant drugs that may be used to treat trigeminal neuralgia include oxcarbazepine (Trileptal). Other drugs, including clonazepam (Klonopin) and gabapentin (Neurontin, Gralise, others), also may be used.

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. 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.

Antispasmodic agents. Muscle-relaxing agents such as baclofen (Gablofen, Lioresal) may be used alone or in combination with carbamazepine. Side effects may include confusion, nausea and drowsiness.
Surgery

In trigeminal neuralgia surgery, surgeons' goals are 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 for trigeminal neuralgia include:

Microvascular decompression. This procedure involves relocating or removing blood vessels that are in contact with the trigeminal root.

During microvascular decompression, your doctor makes an incision behind the ear on the side of your pain. Then, through a small hole in your skull, your surgeon moves any arteries that are in contact with the trigeminal nerve away from the nerve, and places a pad between the nerve and the arteries. If a vein is compressing the nerve, your surgeon may remove it. Doctors also may cut part of the trigeminal nerve (neurectomy) during this procedure, if arteries aren't pressing on the nerve.

Microvascular decompression can successfully eliminate or reduce pain most of the time, but pain can recur in some people. Microvascular decompression has some risks, including small chances of decreased hearing, facial weakness, facial numbness, double vision, a stroke or other complications. Most people who have this procedure have no facial numbness afterward.

Gamma Knife radiosurgery. In this procedure, a surgeon directs a focused dose of radiation to the root of your trigeminal nerve. This procedure uses radiation to damage the trigeminal nerve and reduce or eliminate pain. Relief occurs gradually and may take several weeks. Gamma Knife radiosurgery is successful in eliminating pain for the majority of people. If pain recurs, the procedure can be repeated. Because Gamma Knife radiosurgery is effective and safe compared with other surgical options, it is becoming widely used and may be offered instead of other surgical procedures.
Other procedures may be used to treat trigeminal neuralgia, such as a rhizotomy. In a rhizotomy, your surgeon destroys nerve fibers, which causes some facial numbness. Types of rhizotomy include:

Glycerol injection. During this procedure, your doctor inserts a needle through your face and into an opening in the base of your skull. Your doctor guides the needle 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. Doctors inject a small amount of sterile glycerol, which damages the trigeminal nerve and blocks pain signals. This procedure often relieves pain. However, some people have a later recurrence of pain, and many experience facial numbness or tingling.
Balloon compression. In balloon compression, your doctor inserts a hollow needle through your face and guides it to a part of your trigeminal nerve that goes through the base of your skull. Then, your doctor threads a thin, flexible tube (catheter) with a balloon on the end through the needle. Your doctor inflates the balloon with enough pressure to damage the trigeminal nerve and block pain signals.

Balloon compression successfully controls pain in most people, at least for a period of time. Most people undergoing this procedure experience some facial numbness, and some experience temporary or permanent weakness of the muscles used to chew.

Radiofrequency thermal lesioning. This procedure selectively destroys nerve fibers associated with pain. While you're sedated, your surgeon inserts a hollow needle through your face and guides it to a part of the trigeminal nerve that goes through an opening at the base of your skull.

Once the needle is positioned, your surgeon will wake you from sedation. Your surgeon inserts an electrode through the needle and sends a mild electrical current through the tip of the electrode. You'll be asked to indicate when and where you feel tingling.

When your neurosurgeon locates the part of the nerve involved in your pain, you're 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. Radiofrequency thermal lesioning usually results in some temporary facial numbness after the procedure

I hope this helps you in finding what works best for you! I would also suggest, if you don't have a good neurologist to find one. Finding just any neurologist probably isn't going to help the situation either! Make sure that you get several opinions about what it is, and what you should do about it, and then when you have the answers, you can be confident that your answer is the right one and the choice of treatment is what's best for you and not just their wallets. Most of the time, there's only one shot at the surgical aspect so make sure you have it right the first time! It's kind of like that old adage that says says to measure twice, cut once! Well, I hope this helps you to find the answers to what you seek!
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Old 03-21-2015, 01:29 PM #8
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Hi. After numerous tests....cts, Mri's, blood work, oral surgeon, neurologist, internist, I have been given the diagnosis of atypical facial pain. I've been hurting (level 5-8 pain) for over 3 months. Can't work, talk, sleep, eat, no joy in my life. So now I'm told I will have this forever and can learn to 'manage' it.
Gabapentin does take the edge off but makes me so fuzzy and groggy.
Please, someone out there tell me this is not a life sentence and may possibly get better one day.
I'm feeling depressed and hopeless.
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Old 03-21-2015, 03:36 PM #9
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Welcome Olraalil.
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Old 03-21-2015, 06:43 PM #10
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Quote:
Originally Posted by Olraalil View Post
Hi. After numerous tests....cts, Mri's, blood work, oral surgeon, neurologist, internist, I have been given the diagnosis of atypical facial pain. I've been hurting (level 5-8 pain) for over 3 months. Can't work, talk, sleep, eat, no joy in my life. So now I'm told I will have this forever and can learn to 'manage' it.
Gabapentin does take the edge off but makes me so fuzzy and groggy.
Please, someone out there tell me this is not a life sentence and may possibly get better one day.
I'm feeling depressed and hopeless.
Hi Olraalil,
I'm sorry you have this terrible problem and confirmed dx, have they told you what the cause is? My TN is caused by an arterial knot around the nerve before it branches, but I am one of the unlucky few who has chronic Neuropathic Facial Pain and Parasthesia as well.
I suffered an extreme allergic reaction to Gabapentin, so - for my whole body Neurological Hypersensitivity - I have Lidocaine Infusions and take oral Ketamine. They work wonders for all my Neurological pain (except a new, unrelated type). There are also Lidocaine and Ketamine injections available. These have far fewer side-effects than most meds, Ketamine is even shown to be a mood elevator.
There is no way of knowing how long you will have this without a cause, but being Depressed - though natural - is making things worse. Have you spoken to your GP about your mood? If not, I urge you to do so. Depression rarely goes away without help and it insidiously feeds off our pain.
Over time - with acceptance - you do learn to 'cope' with daily Chronic Pain. It is hard, but there are good days and bright spots which you learn to appreciate more, instead of taking for granted. All the time remember circumstances may change tomorrow.
Any time you feel like talking, I'm here.

Dave.
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