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Atypical facial pain?
Hello, I'm new to this group. I hope to find answers here, as no doctor seems able to help me (ENT, neuro, dentist, ER md).
Since early June, I've been having many symptoms in my face, like extreme tension in jaw, mouth, tongue that would show out of nowhere and last for an hour or so. My left ear is also aching since then, pretty much constantly.
For the past few weeks now, I have pain that shows up (slowly ramps up) in my hard palate, it gets really intense and the pain progresses to the bones of my nose, my sinuses, my cheeks. It's on the left side of my face. Other times it will be my left nostril, the bone in my nose, the bone around my left eye... Since yesterday, when the pain flares up, my chin goes numb, as well as my left cheek and the left side of my nose (and my palate, to some extent). I take Aleve but it doesn't help much...
I had a CT scan of the brain early Sept., which was clear. Am going for head + neck MRI on Monday. ENT wants me to do a scan of the sinuses, but I'm not too fond of the idea of multiplying head scans--I had two in Oct. 2011 for suspected brain aneurysm, which was non existent.
Last night, as I was reading online about TN and ATFP, I experienced 3 brief electric shock (pain) episodes in front of my left ear, just below the temple. I also had one this morning, which woke me up.
I should mention: no trigger points at all.
Does this sound familiar to you? Am I at the right forum? I wish I knew what this was as it's driving me crazy. Of course I'm sometimes imagining the worst, I'm afraid I could have a serious condition that no one or no scan/MRI will detect (tumour of the facial nerve, for example). Could this be ATFP? Should I go back to my neuro and ask for drugs that work on this type of pain? It's so bad and so constant that I haven't been able to work for the past few weeks.
Thanks in advance for you help,
Mimosa
Since early June, I've been having many symptoms in my face, like extreme tension in jaw, mouth, tongue that would show out of nowhere and last for an hour or so. My left ear is also aching since then, pretty much constantly.
For the past few weeks now, I have pain that shows up (slowly ramps up) in my hard palate, it gets really intense and the pain progresses to the bones of my nose, my sinuses, my cheeks. It's on the left side of my face. Other times it will be my left nostril, the bone in my nose, the bone around my left eye... Since yesterday, when the pain flares up, my chin goes numb, as well as my left cheek and the left side of my nose (and my palate, to some extent). I take Aleve but it doesn't help much...
I had a CT scan of the brain early Sept., which was clear. Am going for head + neck MRI on Monday. ENT wants me to do a scan of the sinuses, but I'm not too fond of the idea of multiplying head scans--I had two in Oct. 2011 for suspected brain aneurysm, which was non existent.
Last night, as I was reading online about TN and ATFP, I experienced 3 brief electric shock (pain) episodes in front of my left ear, just below the temple. I also had one this morning, which woke me up.
I should mention: no trigger points at all.
Does this sound familiar to you? Am I at the right forum? I wish I knew what this was as it's driving me crazy. Of course I'm sometimes imagining the worst, I'm afraid I could have a serious condition that no one or no scan/MRI will detect (tumour of the facial nerve, for example). Could this be ATFP? Should I go back to my neuro and ask for drugs that work on this type of pain? It's so bad and so constant that I haven't been able to work for the past few weeks.
Thanks in advance for you help,
Mimosa
Sorry to hear about your pain returning. I have experienced the same thing. My pain was well-controlled for 14 years with neurontin. I believe a minor dental procedure kicked it back up. Oh Lord, worse than anything I ever ecperiienced. I am now on Trileptal along with the neurontin and am hoping for relief. Can't eat, talk, work. Just waiting for relief. Hope you find relief soon.
Lymes disease can cause Trigeminal Neuralgia. Just because your symptoms are gone it doesn't mean they won't come back. Some people develop Chronic Lymes Disease and have to deal with this for life.
If you haven't searched for answers you should. Trigeminal Neuralgia can also go into remission. Mine did for eight years. Now, it is back and ten times worse than it was.
This is not something to fool around with or to ignore.
If you haven't searched for answers you should. Trigeminal Neuralgia can also go into remission. Mine did for eight years. Now, it is back and ten times worse than it was.
This is not something to fool around with or to ignore.
Hi, I haven't visited this forum in a while. Thank you all for your replies!
I don't know what happened, but the pain is gone, it has been for many weeks now. Touching wood it won't return. I have Lyme disease, so I get to experience many many symptoms, some weird & atypical, others more classic, in all of my body. It can be quite maddening at times!
I don't know what happened, but the pain is gone, it has been for many weeks now. Touching wood it won't return. I have Lyme disease, so I get to experience many many symptoms, some weird & atypical, others more classic, in all of my body. It can be quite maddening at times!
I hope by now you have found some answers. I'm not a doctor but It sounds to me like you have TN both type 1 and type 2 like myself. I'm not sure how familiar you are with these conditions, so I'm sorry if I am telling you what you already know. (Oversimplified) TN type 1 is the electric shock pains and TN type 2 is the is the constant pressure, crushing, bruised, and/or tight feeling. Each can happen in any or all of the three quadrants on each side of the face. Tegretol is usually first tried drug, but there are many drugs and combos of drugs to try. Hang in there, getting properly diagnosed with TN or any kind of facial pain is very hard. I also recommend the book "striking back" about TN. I also recommend this community . Good luck, hope you feel better.
So sorry to hear about your daughter.
It takes a while for the drugs to help. Tegretol didn't help me, I ended up on Trileptal. I also had to go name brand, because the generic wasn't working. There is also Gabapentin. All these drugs are anti seizure meds that will help stop the pain. The thing is the doctor has to slowly increase the dosage. You also have to work with the doc to schedule when to take the meds. You want to keep the drug level even in your blood stream.
There are some coping mechanisms. I was using warm compresses, a microwave beanbag. I also used Oragel to numb my mouth enough to eat. Soft foods are best. I lived on Kashi hot cereal and peanut butter at first.
Surprisingly I found that chewing thru the pain for a little while, caused the pain to stop and then I could eat. But everyone is different. What works for one may not work for another.
The first thing you need is a diagnosis. The docs will test for everything else. But it's basically a pain journal describing when, how, what type of pain, how long it lasts, etc. that will allow them to diagnose it. There is no test specifically for TN, but they do have a "thin slice" MRI that will look for blood vessels compressing the nerve. It could also be caused by a tumor, or by MS or by an injury to the nerve.
The second thing you need is to stop the pain. The docs need to work with you to find the right drug and the right dosage level. It takes time. But you want to stop the shocks, because you don't want the nerve "learning" that shocks are ok.
The drugs will affect her though. I was a zombie on Tegretol and depressed on Trileptal. Warn your daughter and help her thru it. Remaining positive is hard, but some good support helps.
A great resource is "Striking Back". A book specifically about facial pain, available on Amazon.
There is also the Facial Pain Association. Google it. They have a great online support group.
Educate yourselves. You need a great doctor, one with lots of TN experience.
I went thru a Gamma Knife which did not work, but seems the easiest and docs push it because the machine costs them so much. Then I had two balloon rhizotomies. The first one only worked for a month, the second one has lasted 3 1/2 years so far.
But I have the complication of MS.
The best surgery is MVD, IF you get an experienced surgeon with a good track record. It can last up to 20 years.
There is no cure yet. But they're looking.
The greatest feeling is waking up from surgery with no pain, weaning off the drugs and living your life again.
Hope this wasn't too much info. Please come back with any questions.
Wishing you and your daughter all the best!
It takes a while for the drugs to help. Tegretol didn't help me, I ended up on Trileptal. I also had to go name brand, because the generic wasn't working. There is also Gabapentin. All these drugs are anti seizure meds that will help stop the pain. The thing is the doctor has to slowly increase the dosage. You also have to work with the doc to schedule when to take the meds. You want to keep the drug level even in your blood stream.
There are some coping mechanisms. I was using warm compresses, a microwave beanbag. I also used Oragel to numb my mouth enough to eat. Soft foods are best. I lived on Kashi hot cereal and peanut butter at first.
Surprisingly I found that chewing thru the pain for a little while, caused the pain to stop and then I could eat. But everyone is different. What works for one may not work for another.
The first thing you need is a diagnosis. The docs will test for everything else. But it's basically a pain journal describing when, how, what type of pain, how long it lasts, etc. that will allow them to diagnose it. There is no test specifically for TN, but they do have a "thin slice" MRI that will look for blood vessels compressing the nerve. It could also be caused by a tumor, or by MS or by an injury to the nerve.
The second thing you need is to stop the pain. The docs need to work with you to find the right drug and the right dosage level. It takes time. But you want to stop the shocks, because you don't want the nerve "learning" that shocks are ok.
The drugs will affect her though. I was a zombie on Tegretol and depressed on Trileptal. Warn your daughter and help her thru it. Remaining positive is hard, but some good support helps.
A great resource is "Striking Back". A book specifically about facial pain, available on Amazon.
There is also the Facial Pain Association. Google it. They have a great online support group.
Educate yourselves. You need a great doctor, one with lots of TN experience.
I went thru a Gamma Knife which did not work, but seems the easiest and docs push it because the machine costs them so much. Then I had two balloon rhizotomies. The first one only worked for a month, the second one has lasted 3 1/2 years so far.
But I have the complication of MS.
The best surgery is MVD, IF you get an experienced surgeon with a good track record. It can last up to 20 years.
There is no cure yet. But they're looking.
The greatest feeling is waking up from surgery with no pain, weaning off the drugs and living your life again.
Hope this wasn't too much info. Please come back with any questions.
Wishing you and your daughter all the best!
Hi nancy99n, My daughter is going thru this she's had sever lightning bolt pain in her right cheek from just under her ear to middle of her lip. for 5 weeks, it has gotten worse to the point she cannot eat and I'm warming her water so she can drink at least small amounts, it seems sound, and temp. trigger the lightning strikes they are so painful she cries, and can last a few seconds to a half hour at a time. she's scheduled for a CT scan tomorrow thru the facial pain clinic. and the ER put her on generic Tegretol, she's taking 300mg/day 2 100mg pills in the morning and 1 pill at night. it wakes her up at night. very painful. Please tell us how you recovered?
I know from personal experience how frustrating it can be to have facial pain and be unable to find a doctor with an answer, a diagnosis, or any help. I went thru six doctors before I found relief for my TN pain.
My advice would be to locate a Facial Pain specialist, a doctor who works with facial pain patients on a daily basis.
Facial pain is sometimes hard to diagnose or can have multiple factors causing it.
Keep a pain journal listing the time the pain happens, the type of pain - aching, burning, electric shock, sharp, etc., how long it lasts, what triggers the pain. Doctors can use this info to help diagnose you.
Bring the images from past tests, most imaging facilities can give you a disc.
Bring a friend. Pain patients are distracted by the pain and sometimes it can be hard to communicate with a new doctor. A friend can help tell your story and can be a second pair of ears to hear what the doctor says
Mention what you've tried or been prescribed to help the pain. Sometimes what works or what doesn't work can give the doctor a clue.
Most of all keep being your own advocate. Remain calm. State your case nod keep looking until you find the right doctor and the right help.
A good resource is the book, "Striking Back". It can help educate you about facial pain.
Let us know how you're doing and take care!
My advice would be to locate a Facial Pain specialist, a doctor who works with facial pain patients on a daily basis.
Facial pain is sometimes hard to diagnose or can have multiple factors causing it.
Keep a pain journal listing the time the pain happens, the type of pain - aching, burning, electric shock, sharp, etc., how long it lasts, what triggers the pain. Doctors can use this info to help diagnose you.
Bring the images from past tests, most imaging facilities can give you a disc.
Bring a friend. Pain patients are distracted by the pain and sometimes it can be hard to communicate with a new doctor. A friend can help tell your story and can be a second pair of ears to hear what the doctor says
Mention what you've tried or been prescribed to help the pain. Sometimes what works or what doesn't work can give the doctor a clue.
Most of all keep being your own advocate. Remain calm. State your case nod keep looking until you find the right doctor and the right help.
A good resource is the book, "Striking Back". It can help educate you about facial pain.
Let us know how you're doing and take care!
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