Questions Upon Questions, Treatments, Doctors

My main goal here is to get as much feedback as possible. I've been doing some studying via the internet and tracking my pain for the past two weeks. I'd like to know what you all think.

Here's my story:

Starting sometime in late May or early June, I began experiencing extreme pain right in front of my left ear, about an inch above my jaw. I went to the dentist thinking a tooth may be the cause. I made an appointment to have my wisdom teeth (all four) removed and waited it out.

Within that waiting period, my pain got VERY severe, going from my ear, sometimes down through my jaw, up my cheekbone, almost to my eye. There were times that the pain was severe enough that I got sick. The pain would last about 2 - 6 minutes. At some point, my pain became less frequent, but was still severe when it did occur. And just around that time, I was due for surgery on my wisdom teeth. I had a few complications after surgery, such as: unable to open my mouth for two weeks, extreme swelling for three weeks, and faint numbness on the right side of my face (that still hasn't gone away). NOTE: I was taking Lortabs as prescribed for about three weeks.


NOW, here's what I've been keeping up with via my handwritten journal:

I am now almost two months out of surgery and the pain has returned. It's mild in comparison to a few months ago. It's the same "electric shock" pain, but it doesn't spread across my face as it did before. The pain now last 10 seconds - 1 minute. Until today, when it lasted inconsistently for more than 10 minutes (mild, to worse, to mild, to worse), but it didn't spread further than right in front of my ear. It felt as though my severe pain was awakening.

My pain seems to occur during certain times:
- the middle of the night (between 12 am - 3 am), possibly clenching?
- when I'm stressed/rushed/anxious
- when my hair is pulled into a bun (once I pull my hair down, the pain seems to subside)
- when I thrust my bottom jaw forward
- drinking from straws

Of course, there are very random times that I can't even figure out.

I take Ativan for my anxiety. I also have Lyrica if my pain becomes too severe, but I'm rationing that as much as possible. Lately, anytime my pain comes along, I take an Ativan and the pain subsides. Is that a sign of something?

I don't drink, I don't smoke, I've never done drugs....excluding previous weed experiences and the above prescriptions. I drink one cup of coffee a day and nothing else but water.

I haven't seen a doctor about this pain, mainly because I have no insurance. My question to you all is this....what do I do? Do you think some of the above could be the cause of my pain? Are there steps I can take to remedy my mild pain? Hot compress, cold compress? Do I need to take an Ativan every time I feel the pain? Was the Lortab part of the reason my pain subsided for so long? What kind of doctor can I go to? All the details. I need your help, because I have no one else willing to help me.

Hi Lin,

First, try to get insurance. It's hard enough to deal with this WITH insurance. I know because for a few years I lost mine and I had no healthcare.

Next, a series of elimination rounds might take place: dentists, ENT's to give you MRIs to look for sinus problems, cracked teeth, etc. Once you get to a neurologist, who will want evidence of the things you've done to eliminate those things, the neuro will discuss your symptoms and start you on something like Tegretol or neurontin, which are the firstline meds in treating TN. You might have to see a pain management specialist in addition to the neurologist for long-term pain control with meds like muscle relaxants, opiates, numbers like lidocaine, etc.

The best thing you can do: keep track of what you've tried, what works, looking for tricks like ice or heat (depending on the type of pain), and researching your own treatment alternatives...pharmaceutical vs. surgery or procedures. Avoid stress, get a lot of sleep, stay out of the wind, AC.

The worst things you could do: start getting teeth pulled, wasting money on mouthguards, vitamins, drinking to control the pain.

Read everything you can and get educated. Do not allow doctors to deter you in your focus to find relief. Be honest with friends, loved ones, co-workers and ask for help. Do not hesitate to post your frustrations and fears on this shareboard. Don't be afraid to ask any question, ever.

I wish I could give you more advice, but don't want to overwhelm you.

The symptoms you describe prior to wisdom teeth being extracted seem to align reasonably well with classic (Type I) trigeminal neuralgia. Your continuing pain symptoms after the extractions, and pain response to predictable triggers might represent a somewhat altered pattern of Type I TN. Your positive response to Ativan (a Benzodiazepine) suggests that there might be a component of neuropathic pain due to dental surgery injury, as well as the ongoing neuralgia.

The Benzodiazepine drugs are not the first or preferred line of medical treatment for either Type I TN or trigeminal neuropathy. That role would be filled by the anti-seizure drugs like Tegretol, Trileptal, and Neurontin. If these meds do not significantly reduce your pain at an acceptable level of side effects, then meds in the class of tricyclic antidepressants (TCAs) might be tried (Amitriptyline, Nortriptyline, about 8 others), as this class of meds has a cross-over action against nerve pain.

You will likely need to be seen and evaluated on medication trials by a neurologist. Not many general practitioners are likely to be comfortable in prescribing for these categories of medications or your type of pain symptoms.

To broaden your own understanding of face pain, I recommend that you at least "browse" the 20+ articles we've put together under the "Face Pain Info" tab on the menu above. There's also a merged version that facilitates printout for later access when you're away from your computer.

Feel free to come back with further questions,

Regards,

R.A."Red" Lawhern, Ph.D.

Resident Research Analyst, LwTN

For even more info - run get the book "Striking Back" by Dr. Ken Casey - it is our bible here and has everything from surgeries, meds, holistic helpers, and helps you understand if you have TN and what type - and what your options are. In the interim for FAST relief - many of us do a topical med on our cheek/face - lidocaine patches or cream Rx. Call your GP's nurse and have it called in. Cream is cheaper than patches.

Keep Posting!

I already take a daily multivitamin, is that a bad thing? Or are you saying don't waste money on remedies that are inconclusive to easing pain?

Colleen said:

Hi Lin,

First, try to get insurance. It's hard enough to deal with this WITH insurance. I know because for a few years I lost mine and I had no healthcare.

Next, a series of elimination rounds might take place: dentists, ENT's to give you MRIs to look for sinus problems, cracked teeth, etc. Once you get to a neurologist, who will want evidence of the things you've done to eliminate those things, the neuro will discuss your symptoms and start you on something like Tegretol or neurontin, which are the firstline meds in treating TN. You might have to see a pain management specialist in addition to the neurologist for long-term pain control with meds like muscle relaxants, opiates, numbers like lidocaine, etc.

The best thing you can do: keep track of what you've tried, what works, looking for tricks like ice or heat (depending on the type of pain), and researching your own treatment alternatives...pharmaceutical vs. surgery or procedures. Avoid stress, get a lot of sleep, stay out of the wind, AC.

The worst things you could do: start getting teeth pulled, wasting money on mouthguards, vitamins, drinking to control the pain.

Read everything you can and get educated. Do not allow doctors to deter you in your focus to find relief. Be honest with friends, loved ones, co-workers and ask for help. Do not hesitate to post your frustrations and fears on this shareboard. Don't be afraid to ask any question, ever.

I wish I could give you more advice, but don't want to overwhelm you.

Thank you for this advice. I'd love to read the book and be more informed. My skin is really sensitive, do you think I could still use the lidocaine patches/cream?

Kc Dancer Kc said:

For even more info - run get the book "Striking Back" by Dr. Ken Casey - it is our bible here and has everything from surgeries, meds, holistic helpers, and helps you understand if you have TN and what type - and what your options are. In the interim for FAST relief - many of us do a topical med on our cheek/face - lidocaine patches or cream Rx. Call your GP's nurse and have it called in. Cream is cheaper than patches.

Keep Posting!

From what Colleen said, it seems like a good idea to go through other doctors for various possibilities before seeing a neurologist. I think this is a good idea, and will hopefully keep from having "medication trials". I've read most of the helpful discussions and tabs on this site, but there are so many options/cures/decisions that I wanted to ask specifically for my case. Your insight has been really helpful!

Richard A. "Red" Lawhern said:

The symptoms you describe prior to wisdom teeth being extracted seem to align reasonably well with classic (Type I) trigeminal neuralgia. Your continuing pain symptoms after the extractions, and pain response to predictable triggers might represent a somewhat altered pattern of Type I TN. Your positive response to Ativan (a Benzodiazepine) suggests that there might be a component of neuropathic pain due to dental surgery injury, as well as the ongoing neuralgia.

The Benzodiazepine drugs are not the first or preferred line of medical treatment for either Type I TN or trigeminal neuropathy. That role would be filled by the anti-seizure drugs like Tegretol, Trileptal, and Neurontin. If these meds do not significantly reduce your pain at an acceptable level of side effects, then meds in the class of tricyclic antidepressants (TCAs) might be tried (Amitriptyline, Nortriptyline, about 8 others), as this class of meds has a cross-over action against nerve pain.

You will likely need to be seen and evaluated on medication trials by a neurologist. Not many general practitioners are likely to be comfortable in prescribing for these categories of medications or your type of pain symptoms.

To broaden your own understanding of face pain, I recommend that you at least "browse" the 20+ articles we've put together under the "Face Pain Info" tab on the menu above. There's also a merged version that facilitates printout for later access when you're away from your computer.

Feel free to come back with further questions,

Regards,

R.A."Red" Lawhern, Ph.D.

Resident Research Analyst, LwTN

The lidocaine cream is a cheap way to find out--- rub some on your wrist or somewhere other than your face the first time - if after a few hours no reaction - try the face -- your pharmacist is a great help when you have questions about prescriptions but no regular doctor to ask them!

Hi Lin,

I think a multi-vitamin is a good thing and I take one every day. What I meant to say was to avoid spending a lot of money on the extra vitamins, minerals and supplements that make claims of easing TN pain & symptoms. I don't think they work. And when you're in a condition of pain, it's easy to get caught up in accumulating tons of hopeful treatments. I've never met or heard from anyone who has been cured, for example, by acupunture for TN, even though the initial treatment might bring some relaxation. I've just wasted so much money on herbal supplements that I wanted to tell you to be wary and thrifty. What's going to help you are pharmaceuticals and/or surgery if it's determined you're a good candidate. Even the surgery seems no guarantee and can harm you even more. I've had stellate ganglion blocks that did nothing but traumatize me. Even had botox injected into my TN area , which made me numb and in pain. A good neuro or pain mgt specialist will be the best thing.

Lin said:

I already take a daily multivitamin, is that a bad thing? Or are you saying don't waste money on remedies that are inconclusive to easing pain?

Colleen said:

Hi Lin,

First, try to get insurance. It's hard enough to deal with this WITH insurance. I know because for a few years I lost mine and I had no healthcare.

Next, a series of elimination rounds might take place: dentists, ENT's to give you MRIs to look for sinus problems, cracked teeth, etc. Once you get to a neurologist, who will want evidence of the things you've done to eliminate those things, the neuro will discuss your symptoms and start you on something like Tegretol or neurontin, which are the firstline meds in treating TN. You might have to see a pain management specialist in addition to the neurologist for long-term pain control with meds like muscle relaxants, opiates, numbers like lidocaine, etc.

The best thing you can do: keep track of what you've tried, what works, looking for tricks like ice or heat (depending on the type of pain), and researching your own treatment alternatives...pharmaceutical vs. surgery or procedures. Avoid stress, get a lot of sleep, stay out of the wind, AC.

The worst things you could do: start getting teeth pulled, wasting money on mouthguards, vitamins, drinking to control the pain.

Read everything you can and get educated. Do not allow doctors to deter you in your focus to find relief. Be honest with friends, loved ones, co-workers and ask for help. Do not hesitate to post your frustrations and fears on this shareboard. Don't be afraid to ask any question, ever.

I wish I could give you more advice, but don't want to overwhelm you.

You should see a good neurologist first. One that is knowledgable about tn. They will recommend further test to rule out other culprits, this can/will include blood work, MRI, dental X-rays, ect. On the topic of pain management, I do not know any good and reputable ones that will take a walk in patient, and be wary of the ones that do. Anitseziure drugs will and should be the first line drugs for this. If you think about surgery get more than one or two opinions. Not everyone is a good candit for it. Just be informed of your choices for your treatment, and remember what works well for others may not work for you.

One additional FYI: questions that you ask during your initial interview with a medical practitioner can help you to eliminate the ones who shouldn't be seeing facial pain patients at all, much less you as an individual. I suggest a reading of the article in our Face Pain Info cluster pertaining to establishing a positive doctor-patient relationship. There is a list there of possible questions for the first interview. See http://www.livingwithtn.org/page/info-3 .

If a doctor is truly competent, he or she will WANT you to be a "difficult patient" from the perspective of encouraging you to be an active rather than passive member of your own health management team. If a doctor resists your desire to understand and participate, then they shouldn't be in chronic pain practice. Active patients get better medical outcomes.

Regards and best, Red

The oral surgeon mentioned that the right side of my face should be the one in pain based on my x-ray. When I told him it was my left, he looked at me wearily and said that all of my teeth could cause the pain I was experiencing, yet he was surprised my right side wasn't the most painful. The right side of my lower jaw, my teeth, and part of my tongue are actually still numb from surgery. The left side healed quite quickly after surgery.

I DID mention to my OS about a tooth on my top left side that has a hole in it. Yes, A HOLE. I asked him if it looked as if it could cause the pain, and he said he didn't see any reason for it to be causing a problem. I'm actually going to my dentist next month to have this hole checked out. Any suggestions?

Cleo said:

I would say go back to the OS if improving symptoms get worse. going back for a follow up due to complications should be a no charge.... impacted teeth/infection can cause trigeminal nerve paresthesia symptoms you have described. did your pano xray show any risk of nerve damage possibly happening?

Another question: I live in Mississippi where "specialists" aren't that common AND if there is a certain specialist, he/she may be 1 of 3 to choose from. Also, there are no doctors listed from Mississippi on the doctor recommendations page. Would I be better off just going to somewhere like New Orleans (two hour drive) that already has a doctor listed on this website? New Orleans would be the closest doctor on the recommendations page. The closest one after New Orleans would be Birmingham and that's almost four hours away.

Richard A. "Red" Lawhern said:

One additional FYI: questions that you ask during your initial interview with a medical practitioner can help you to eliminate the ones who shouldn't be seeing facial pain patients at all, much less you as an individual. I suggest a reading of the article in our Face Pain Info cluster pertaining to establishing a positive doctor-patient relationship. There is a list there of possible questions for the first interview. See http://www.livingwithtn.org/page/info-3 .

If a doctor is truly competent, he or she will WANT you to be a "difficult patient" from the perspective of encouraging you to be an active rather than passive member of your own health management team. If a doctor resists your desire to understand and participate, then they shouldn't be in chronic pain practice. Active patients get better medical outcomes.

Regards and best, Red

In reply to myself, there is a neurology clinic in a town near me, so I could go there. I just don't know what I'm looking for exactly. As in, I have no idea how to choose a doctor.

Lin said:

Another question: I live in Mississippi where "specialists" aren't that common AND if there is a certain specialist, he/she may be 1 of 3 to choose from. Also, there are no doctors listed from Mississippi on the doctor recommendations page. Would I be better off just going to somewhere like New Orleans (two hour drive) that already has a doctor listed on this website? New Orleans would be the closest doctor on the recommendations page. The closest one after New Orleans would be Birmingham and that's almost four hours away.

Richard A. "Red" Lawhern said:

One additional FYI: questions that you ask during your initial interview with a medical practitioner can help you to eliminate the ones who shouldn't be seeing facial pain patients at all, much less you as an individual. I suggest a reading of the article in our Face Pain Info cluster pertaining to establishing a positive doctor-patient relationship. There is a list there of possible questions for the first interview. See http://www.livingwithtn.org/page/info-3 .

If a doctor is truly competent, he or she will WANT you to be a "difficult patient" from the perspective of encouraging you to be an active rather than passive member of your own health management team. If a doctor resists your desire to understand and participate, then they shouldn't be in chronic pain practice. Active patients get better medical outcomes.

Regards and best, Red

Call and ask around - if a neurologist has any patients with TN -- How Many? VERY important!!!