Hi, I am finally going to the neurologist tomorrow at noon. Can anyone tell me what to expect when I see her? Is she going to poke and proude. Rub my face? Blood work? Can anyone give me a heads up as I also have anxiety disorder and this is really worrying me. Thanks
Hi, Barb,
A good neurologist will take a medical history (possibly someone on office staff will give you forms to be reviewed with the doctor when you see her), and then ask you questions about it. She or her staff will want to know what medications and vitamins or supplements you are taking, and on what schedule. She may ask you to show her manually where your pain is, and describe verbally what kind it is, when it happens. She should ask about "trigger zones" -- places where light touch may cause you to have a painful reaction. If she doesn't ask and you have them, bring them to her attention. Some neurologists may do a very light pin-test -- running the sharp end of a safety pin very lightly along the surface of your face -- but you shouldn't be jabbed. Some doctors may actually use a feather to test for unusual sensitivity to light touch. You should also be asked about muscle tics, swelling, redness, rashes, or any surface evidence of inflammation.
The doctor should order a liver panel (blood test) and check for renal function before she prescribes any of the common drugs used in treating TN, but particularly Tegretol, an anti-seizure drug often regarded as the gold standard of meds for neuropathic face pain disorders... You will need a follow up at 90 days as you titrate up, to be sure your renal system isn't over-reacting or allergic to the med.
Feel free to post again here, or directly to my address at ■■■■■■■■■■■■■■■■■■■. And if you have ever been trained to meditate as part of managing your anxiety disorder, this would be a good time to settle yourself down and get centered. TELL the NEUROLOGIST you deal with anxiety disorder and what meds you take for it, and ask her to tell you what she intends to do before she does anything that physically touches your face.
I'll check back later tonight before I go off to bed.
Go in Peace and Power
Red Lawhern, Ph.D.
Master Information Miner
Richard, that doesn’t sound too badly except maybe the feather test. I am already on two different anti seizure meds for this and have been to the hospital twice as well. I am not on any meds for anxiety I just deal with it as it comes. 
I need pain managment for my facial pains other then narc. which is what I am on right now. I sleep from 10pm until 3-4 pm the next day. only getting up to take more meds.
Richard A. “Red” Lawhern said:
Hi, Barb,
A good neurologist will take a medical history (possibly someone on office staff will give you forms to be reviewed with the doctor when you see her), and then ask you questions about it. She or her staff will want to know what medications and vitamins or supplements you are taking, and on what schedule. She may ask you to show her manually where your pain is, and describe verbally what kind it is, when it happens. She should ask about "trigger zones" -- places where light touch may cause you to have a painful reaction. If she doesn't ask and you have them, bring them to her attention. Some neurologists may do a very light pin-test -- running the sharp end of a safety pin very lightly along the surface of your face -- but you shouldn't be jabbed. Some doctors may actually use a feather to test for unusual sensitivity to light touch. You should also be asked about muscle tics, swelling, redness, rashes, or any surface evidence of inflammation.
The doctor should order a liver panel (blood test) and check for renal function before she prescribes any of the common drugs used in treating TN, but particularly Tegretol, an anti-seizure drug often regarded as the gold standard of meds for neuropathic face pain disorders... You will need a follow up at 90 days as you titrate up, to be sure your renal system isn't over-reacting or allergic to the med.
Feel free to post again here, or directly to my address at lawhern@hotmail.com. And if you have ever been trained to meditate as part of managing your anxiety disorder, this would be a good time to settle yourself down and get centered. TELL the NEUROLOGIST you deal with anxiety disorder and what meds you take for it, and ask her to tell you what she intends to do before she does anything that physically touches your face.
I'll check back later tonight before I go off to bed.
Go in Peace and Power
Red Lawhern, Ph.D.
Master Information Miner
Hi Barb, i remember being really nervous too, you can take a friend with you if you like. From my own experience they’ll ask you a number of questions like, “when did you first experience this pain?” etc. It’s definately more questions and trying to look at your medical history than any poking and proding, just like going to your GP and telling them about your pain, they’re listening intently to figure out the right treatment plan for you.
If i remember right before i went to my Neuro appointment i tried to prepare by trying to remember when i first started getting teeth pain (as thats how my TN began, this may not be the case for you but i’m sure you understand what i mean) and wrote down a list of all the meds i had been prescribed from my GP so far. Anything you think might help towards your diagnosis can be really beneficial for your appointment, including if you had changes in the pain - like my pain changed in intensity at different times of the day etc so things like that are really important, write a list as there’s so many things you think are insignificant but they may be really important to your diagnosis.
I remember someone saying to me that with these appointments you’re trying to use your time effectively so make sure you get some questions in too… i asked these questions at the end of my appointment, i took a little notebook with me and encourage you to take one with you, and take some notes, they should be more than willing to answer questions for you.
Here’s an idea of questions you could ask…
1.What do you think is causing my problem?
2.Is there more than one condition (disease) that could be causing my problem?
3.What tests will you do to diagnose the problem and which of the conditions is present?
4.How good are the tests for diagnosing the problem and the conditions?
5.How safe are the tests?
6.What is the likely course of this condition? What is the long-term outlook with and without treatment?
7.What are my treatment options? How effective is each treatment option? What are the benefits versus risks of each treatment option?
8.If my symptoms worsen, what should I do on my own? When should I contact you?
9.Are you aware of each of the medications that I am taking? Can they adversely interact with the medications you are prescribing for me?
10.Should we monitor for side effects of the medications that you are prescribing or for their interactions with other medications I am taking?
These are all from… http://www.medicinenet.com/script/main/art.asp?articlekey=13683
I wrote all the above questions in my own words and left some out that weren’t relevant to me you can decide whats relevant to you.
For the physical side of things, I definately didn’t get poked and proded so I think you’ll be okay, the usually Neurological tests should be done - checking your reflexes but this depends on what your Neuro deems necessary. My Neuro ordered blood tests but everything was there from my GP anyway.
I hope this helps with your appointment. Anymore questions I’d be happy to answer but I really do hope you get some good answers from your appointment and all goes well. Let us know how it goes okay. Good luck Barb, I know how bad anxiety can be for people so make sure you take it easy. x Susan.
It's a soft feather, Barb -- if she uses one at all. Younger docs will generally use other techniques... Be aware also, that there is no "definitive test" for the assessment of facial pain. Most of the diagnosis process will focus on the description and history of the pain.
As you have discovered, the narcotic drugs are not effective for many patients (though they do help some). The meds most often used on typical (Type I) Trigeminal Neuralgia are Carbamazepine and Oxcarbamazepine (which seems to be tolerated better by a lot of people). Neurontin (Gabapentin) has been effective alone or in combination, for many thousands of facial pain patients -- although a controversy has recently arisen over the manufacturer having fudged a trial that indicated lower bio-availability for the drug than the experimenters had anticipated and wanted. Baclofen is also often used. Also potentially helpful may be the class of drugs called "trycyclic" antidepressants, and/or Lyrica (often used in fibromyalgia), particularly in Type 2 ("atypical" ) TN.
The advice you've received on having a (short) list of questions is basically sound. For facial pain patients, the questions may need to be tailored somewhat, to avoid consuming the limited time that your medical insurance will pay for in the doctor's office appointment. It's probably best to let your neurologist guide the session, after you inform her initially that you will have questions at the end of the appointment, if your concerns are not addressed naturally as you go through her exam. One that can be particularly important and is not quite explicit in the list offered from Medicinenet: "Do any of the meds I am now using interact with each other or with my diet in ways that can cause the sleepiness I'm experiencing -- or lessen the effectiveness of some of the meds?"
Though a lot of people don't know it, one classic example of a dietary interaction is that grapefruit juice can reduce blood concentration of Carbamazepine (Tegretol). There may be others. And from what I've read, when you add a narcotic or NSAIDS med to an anti-seizure med, the range of possible side effects acts a little like 1+1=5 rather than 1+1=2. There's a lot of variation between patients, too. So the rules for a doctor follow-up do need to be made clear.
Hang in there, Barb. Keep on truckin'
Red
Barb Shakespeare said:
Richard, that doesn't sound too badly except maybe the feather test. I am already on two different anti seizure meds for this and have been to the hospital twice as well. I am not on any meds for anxiety I just deal with it as it comes. :) I need pain managment for my facial pains other then narc. which is what I am on right now. I sleep from 10pm until 3-4 pm the next day. only getting up to take more meds.
Red, you are correct on the meds part. All my doctors, except my FP who has not seen me for this, seem pretty cavalier about all my medications. I have brought up the subjject in my 5 minutes of time with the neuro on my first appt. and I got "sure, yeah, no problem." However in doing the research you suggested it turns out that many of my meds have a a shorter life wit the addition of not only the Carbam whachamacallit but even some of the meds my psych. prescribed. I'm going to have to stand tuff on this subject and get the straight skinny.
Hi there -- My neurologist did an MRI first to rule out MS. Standard. Then he listened to my symptoms and gave me proper diagnosis of TN1. As far as anxiety, you might want to realllly medicate as needed because one major trigger can be stress!
Let us know how it goes!