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. :confused:

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 :)

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.

motor cortex stimulation
 

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?
miki 7
miki 7

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.

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!

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!

New to site
 

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.

Welcome Olraalil. :Wave-Hello:

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.

Thanks, Dave, for your reply. I am trying to get an appointment with a psychotherapist...just waiting. I'm pretty sure I'm only depressed because I hurt all the time but thought maybe a professional could help me with the whole 'managing the pain' concept.
All the test results (CT, MRI, bloodwork) show there is no cause for the pain which almost makes it harder to accept. I'm one who wants to know WHY? And I guess I'm a little impatient. I've been hurting for 3 months, but I've read some threads here where people have suffered for years. I don't know how they can tolerate it.

Hi Olraalil,
Visiting a Psychotherapist is a very good idea - anything that helps the mind with the coping mechanism is worth trying - many of us use Meditation daily to strengthen our minds to help us cope.
It is frustrating when tests show there seems to be no cause. I know you saw an Oral Surgeon - does that mean there is no possibility this could have a dental root (no pun)?
I hate to tell you this, but I am 19 years into my suffering. The arterial knot showing on my MRI will never go away. You COULD have an artery pressing on the Trigeminal Nerve, many times they don't show on MRI's.
Good luck finding your Therapist, you may find 'acceptance' is the first part of learning how to cope. If you are rx'd AD meds, don't automatically turn your nose up at them, few people know the severity of this pain. Do all you can, and try all the meds and treatments to get back some semblance of a normal life.

Dave.

I have the same thing and it can wear you down. However, I keep researching and looking for new things to try. The pain dr. suggested Botox, but in my state medical marijuana is a possibility, so I am looking into that as well. I have just learned that Yale has a clinic that specializes in facial pain, so that is my next stop.

[QUOTE=BeckyandDan;974101]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. :confused:[/QUOTE

I have the same problem and the same failures. What does that treatment consist of? Have you tried medical marijuana or Botox? That is what I am exploring next. Good luck.

Wow, I have th too but only for past 4 weeks, allergic gabapentine and pregablin too. What I find works fir th pain is 75mg amitriptyline and cocodomal. I get the thats. Pain to remind me to take at night. Im here for different Nero problem, but nice to know like minded people who understand that rare please if being hit by a baseball bat constantly. Hugs

I have that diagnosis, but it's just the RSD spread in my head and face, eyes too. I use nasal ketamine and 4% lidocaine nasal spray and after a couple months it started controlling it very good. I have tried stellates and speneopaletine (sp?) blocks and cervical faucet blocks. The cervical block helped for a little while which tells me that is what is mediating my pain in my head. It is SIP. I am thinking of doing laser surgery to clean up my spurring and stenosis in my neck to see if it would help knock the burning down. My back, face and head are continuously burning since my foot surgery in 2011.

Hi Sonia1,

I am curious as to if the medical marijuana had any effect. I have atypical facial pain and the medications are not helping.

Thanks,
Bradpete3

Hi I know what you are going through. I have had atypical facial pain for 2 years now. And it seems like it isn't getting any better. My pain is in my mouth in the gums on the right side of my face it hurts so bad and no one understands how bad I really hurt it feels like my mouth is being cut open all day with no break from it at all the only time I don't hurt is when I'm asleep

Hi kmathias,

I am sorry you have been suffering so for 2 years. Was the cause the same as the Poster you quoted - Dental work? If so, I would advise you to repost over on our Dental Forum:

http://neurotalk.psychcentral.com/forum89.html

where our welcoming and knowledgeable Members will make themselves available to you.

If it comes from other issues, my story is pretty much detailed above where it comes down to Neuropathic Facial Pain, TN and Paresthesia. I am always willing to discuss anything you feel may be helpful.

Dave.

Hi Dave,I hope you get to see this message seeing you posted quite awhile ago! Anyway I too am from the UK,Oxford,and I have had facial pain for 14 years.I don't have the striking jolts but constant pain with painful stabs .Like you I have exhausted all the systemic medications as I am hyper sensitive to them.I am very interested in your pain management regime- are you under a pain management clinic ? I have an appointment in Feb to attend one here in Oxford.My doctor is nonplused by my case and I am being my own advocate hence my interest in your treatment.I feel very alone in this nightmare but keep searching for an answer......you may just be it Dave!Thanks!Happy New Year! Wanganui

Hello Wanganui,

Welcome to the NeuroTalk Support Groups!

I'm sure that EnglishDave, or other members, will respond when they are able.

Happy New Year to you.

Welcome
 

Thank you Lara for welcoming me! Happy New Year!

Hi Wanganui,

Sorry for the delay in responding, I have been laid up, ill.

Few things are more miserable than chronic Facial Pain, even the sporadic attacks of TN only bear comparison - at least their intensity lasts minutes, it is not ongoing.

While the cause of my TN and Facial Pain/Paresthesia is known (arterial knot), no Neuro can understand WHY I suffer with the constant pain and numbness.

As for treatments, I have the misfortune of suffering chronic Cluster Headaches which take priority. For prevention I take Topiramate, an anti-convulsant, which has the beneficial side effect of reducing the Facial Pain, probably by 25%. Due to my multiple other conditions I also have monthly Lidocaine Infusions and take Oral Ketamine. After this procedure, or having taken the Ketamine, I notice a marked reduction in pain, but not the Paresthesia.

The Infusions are a little extreme for this condition, but the other two, or another anti-convulsant could be worth exploring.

Hope you get some relief.

Edit: Just read your other Posts. You should definitely have your GP refer you to an idiot Neuro (just my low opinion of them, but they serve a function sometimes). I am surprised you have not seen one before, that is the first option usually.


Dave.

Atn
 

Thank you English Dave! I will ring my doctor today to refer me to a neurologist.I need help quickly as there seems to be no let up with this pain especially over the last three months!Best Wishes!

Hi, I was diagnosed with the same thing but it's RSD. I used 4% lidocain nasal spray, 10% ketamine nasal spray and oral ketamine troches. The lido and k spray over time reduced and eventually ended pain. I has speneopatine blocks, stellates did nothing. The continuous use of the nasal sprays settled nerve activity down. Dental work troches helped. I also used ketamine topical cream on my face, refrigerator cold packs too. It's possible your cervical spine could be mediating your face pain or it could be vascular. Try clonodine patch and if it helps it might be vascular. My eyelashes and eyebrows used to feel like steel wool. Head pain no fun. You can use topical k on your neck too numbs pain signals when but on spine. Any questions send me a message.

Hi Jeri. I am very interested in talking to you regarding the Ketamine treatments as I am pretty much out of options and have a lot of rarities surrounding my particular case. My problems intensified/worsened after my wisdom teeth were extracted 12 years ago. After intense pain occurred in my upper left socket 2 weeks after extraction a mass formed in my upper left socket. The muscles surrounding that socket became inflamed/rigied to the point I could feel them popping out with a tongue sweep and I had an extreme headache. The mass was removed with no obvious causes or infections, and after a 3 week healing period which resulted me feeling the best I had in YEARS, the mass returned after being in a steam room/sauna.

I have had a headache all day, every day since. I have had teeth removed, nerve blocks, botox, all of the ATN/TN meds, tried accupuncture/chiro/massage/other alt medicines, had splints made, had balloon compressions with glycerol...nothing has helped. I have been to Mayo, Cleveland Clinic, Cedars Sinai...and others in a total of 12 states. In the last few years doctors seem to be gravitating toward the atypical facial pain profile, though I'm not so sure.

The problem with me is that I have a lot of unusual circumstances surrounding my case. Prior to the tooth removal I suffered from impaired nasal breathing, malaise, neck stiffness and a bunch of other seemingly unrelated issues like my smile feeling off and poor posture. Two days after removal I experienced a brief but 100 remission of symptoms. Imagine being born sick. You feel as if you don't feel like everyone else but you don't have a reference point so you are unsure. At this point I realized I had been dealing with something since at LEAST the 7th grade, when I experienced a period of extreme facial fatigue, a severe migraine, then a 3 month long bout of insomnia. I knew I didn't feel "right" but couldn't quantify it; this bothered me as I was a very intuitive kid who always knew when I had strep, sinus infections, etc. I started sleeping again but was never the same and it bothered me for years. I had no idea how bad it was until that epiphany after the removal.

So there is the age of onset (12), the mass (that formed TWICE in the same spot), the impaired nasal breathing (not sinus related), the muscular rigidity and dysfunction in that region and the headaches. Right now about the only things that I have left on the table are the DREZ procedure (don't feel good about that after the last one made it worse), MCS (no insurance covers it) and maybe ketamine treatments (no one close to Kansas City). The hard part is I have yet to find ANYONE that has a story similar to mine to the point where I'm like "yep that's me". To me be quite honest I'm not sure if I have CRPS (I don't quite fit there) or atypical facial pain (don't exactly fit their either).

All I know is I'm at the end of my rope. If you could give me some background it may help with some decisions I'll have to make.