500 questions from the newbie

General General TN & GPN (Old Site)
1

Hi. You have no idea how happy I am to have found this place. This TN stuff is all fairly new to me, although as I start to look backward and connect a few previous issues to the possibility of TN, things are starting to make more sense!

I'm hoping that posting most of my initial questions here will be *slightly* less annoying than posting 500 times, every time I think of a new question.

My first question, is...is it stress related? Everyone (friends, family, etc) keeps suggesting stress relaxation techniques, and I'm trying them because I'll try anything at the moment, frankly, but does it do any good?

Related to that question...how do emotions effect your TN? I had a pretty good day, pain-wise yesterday, and I went to my mother's birthday party in the evening. We had a great time, there was zero stress, but mid-way through the party I got the electric shock. It got worse from there, until by the time I was back in my car I was crying. So...can happy emotions effect it as much as stress kinds of emotions?

Semi-related: In the midst of that episode last night, I stopped and bought that Neuragen cream stuff. I was hesitant because of the price, but I was crying and desperate. It took a few minutes to start working, but it stopped the episode right in its tracks. I was pretty impressed.

I know it's not a permanent solution, but I'm pretty sure it's my new best friend!

(Okay, that wasn't really a question I guess. Or maybe....have any of you tried a topical cream and had it work?)

I have an appointment today and I'm a little nervous. I don't have a good history of doctors listening to me when I have an issue I can't fully describe. When I get online and research to fully explain myself, I end up getting accused of trying to fake something. :(

I believe this is made worse by the fact that I am on Medicaid.

Do any of you have advice on getting TN help when you are on public assistance? My goal here is to get help so that I *don't* have to get on disability. I want to keep working, I want to have as normal of a life as possible.

Thank you for listening to me. I tend to babble. :)

-Roselyn

2

I have no idea if it's stress related or not, but it very well could be. My business partner swears that keeping my stress levels down improves my symptoms, and notes that flareups are more common when I'm stressed out.

I'm going to broach this next bit carefully, because I don't want to offend anyone.

One of the quickest ways to alienate some neurologists is to tell them you have relief from a homeopathic remedy of any sort. Many people don't know what the term "homeopathic" means, and how the medical community tends to feel about it, so I'll give you a link (it's not the best, but is easy to read): http://en.wikipedia.org/wiki/Homeopathy

At best, medical doctors will think that you are experiencing the placebo effect. The placebo effect is very real, and if you find relief they will not object to it. Some actually advocate the use in certain patients as an adjunct to medication, because the patient actually finds relief when they gain control and feel like they are doing something proactive.

Unfortunately many doctors, particularly specialists, will immediately write off a patient as malingering or engaging in drug seeking behavior if they report even the slightest bit of relief from something that can not be responsible for the effect. They are extremely arrogant to assume that only medications can provide relief for physical symptoms, and may conclude that the problem is psychiatric.

I've used a homeopathic muscle relaxer in the past with good results, even though I knew there were no active ingredients in the pills. I was aware that my response was the placebo effect, and it still worked. But I will never admit that to my doctor, and since there is literally no chance of having a drug interaction, I don't worry about it. I do hope that water doesn't have memory though, because I hate to think that the water I drink remembers passing through a cow's bladder.

Good luck with your appointment!

3

About your questions, Rosyln,

TN is not caused by stress, but many patients report breakthrough pain may occur more often when they are under stress. And FYI, "stress" is the body's reaction to uncontrolled emotional or physical change. So yes, both unusual unhappiness or distress AND unusual happiness can be triggers or facilitators for an outbreak of face pain.

What is the active ingredient in Nuragen? Quite a number of our members have tried topical creams. But the more effective tend to be in the family of Xylocaine and other anesthetics. The general rule of thumb is "do whatever works, but be aware of known dangers when there are any." That's one reason why it's very advisable for face pain patients to stay the heck away from alcoholic drinks. The known dangers there are significant, even if some patients believe they feel better when there is alcohol in their blood stream.

If any doctor accuses you of trying to fake something because you've done your homework, then (a) send them here, and (b) inform them nicely that the Pew Research Center has determined that about 2/3rds of all Internet users have researched potential health issues relating to their symptoms in major diseases or disorders, before they see a doctor. The appropriate response to any doctor who comes across this way aggressively is "get over yourself, doctor. You are my employee, not the other way around! And your patients will do better if you wise up and realize that they need to be members of their own health management team."

This latter is actually science rather than attitude. Though a lot of doctors have reservations on the research, there are strong indications that patients who have a strongly positive and supportive relationship with their physicians, actually do better on medical outcomes -- so much so, that distinct and repeatable changes occur in brain response as detected by Functional MRI. The opposite is also true: a bad relationship is associated with persistently worse outcomes. The effect is called "nocebo", relating as it does to "placebo".


Regarding disability support, yes it's possible if you have debilitating face pain that is unresponsive to medication or surgery. It takes some effort to establish that disability, and you'll need a strong relationship with a doctor who understands what he or she must do in order to help you qualify. Being on public assistance, your options for getting help to AVOID disability may be very limited. However, one of the links from our "Coping With Crisis" sub-page (Face Pain Info) will take you to a collection of online resources and 800 numbers which provide free or subsidized health care resources on the Net.

Once you're back from your appointment, you can start further research here. Suggest you begin with the TN Fact Sheet at the top of our main page, and then do some reading of articles in the Face Pain Info and Resources tabs.

Feel free to come back with more questions.

Regards

Red Lawhern, Ph.D.

Resident Research Analyst

4

As a social worker / case worker in the real world..... once you get documentation of your disability you will be home free and won't be doubted. When you see any professional..... write down your questions, concerns, bring documentation - its all in the paperwork. Make sure you get any documentation you need from them.

Stress made my TN feel worse --- even after my MVD - I got on a cruise ship = was so happy - wind on my face - had an attack - now been pain free for months

Lidocane patches RX were the best thing that ever happened to my face topically - glad you found something!

If you get your disability documented - and need to switch careers go to your local vocational rehabilitation office and they will pay for you to go to school or train for a different job.

5

Thank you for your honest response. I grew up as the daughter of a hospital pharmacist, so I've seen the closed-mindedness that some specialists can get about non-medicine related treatments.

I myself am not a huge proponent of homeopathic remedies, but at least in the short-term, if it works, I'm going to use it. Especially when the doctors around me can't seem to agree on anything, much less a treatment.

Tina S said:

I have no idea if it's stress related or not, but it very well could be. My business partner swears that keeping my stress levels down improves my symptoms, and notes that flareups are more common when I'm stressed out.

I'm going to broach this next bit carefully, because I don't want to offend anyone.

One of the quickest ways to alienate some neurologists is to tell them you have relief from a homeopathic remedy of any sort. Many people don't know what the term "homeopathic" means, and how the medical community tends to feel about it, so I'll give you a link (it's not the best, but is easy to read): http://en.wikipedia.org/wiki/Homeopathy

At best, medical doctors will think that you are experiencing the placebo effect. The placebo effect is very real, and if you find relief they will not object to it. Some actually advocate the use in certain patients as an adjunct to medication, because the patient actually finds relief when they gain control and feel like they are doing something proactive.

Unfortunately many doctors, particularly specialists, will immediately write off a patient as malingering or engaging in drug seeking behavior if they report even the slightest bit of relief from something that can not be responsible for the effect. They are extremely arrogant to assume that only medications can provide relief for physical symptoms, and may conclude that the problem is psychiatric.

I've used a homeopathic muscle relaxer in the past with good results, even though I knew there were no active ingredients in the pills. I was aware that my response was the placebo effect, and it still worked. But I will never admit that to my doctor, and since there is literally no chance of having a drug interaction, I don't worry about it. I do hope that water doesn't have memory though, because I hate to think that the water I drink remembers passing through a cow's bladder.

Good luck with your appointment!

6


Thank you for your response.

I'm not sure I explained myself well enough in my original question. I don't want to get on disablity. I don't want to stop working. I love my job and want to continue doing it as long as humanely possible! All I want is a treatment that helps alleviate enough of the pain so that I'm not crying at work, and so I can be a good and useful mother at home.

The only reason I am on "public assistance" at the moment is because I cannot afford health care for myself and my daughter on my current salary, and because of recent budget cuts to Head Start, they aren't able to give me more than 60 hours a month in work. We get Medicaid and some food stamps, that's it.
I don't want disablity.


Kc Dancer Kc said:

As a social worker / case worker in the real world..... once you get documentation of your disability you will be home free and won't be doubted. When you see any professional..... write down your questions, concerns, bring documentation - its all in the paperwork. Make sure you get any documentation you need from them.

Stress made my TN feel worse --- even after my MVD - I got on a cruise ship = was so happy - wind on my face - had an attack - now been pain free for months

Lidocane patches RX were the best thing that ever happened to my face topically - glad you found something!

If you get your disability documented - and need to switch careers go to your local vocational rehabilitation office and they will pay for you to go to school or train for a different job.

7

Your response was really informative! Thank you!


I saw the new doctor last night, and to say I was less than impressed would be giving him too much credit. My actual PCP is out of town for 3 weeks, and when I made the appointment last week I was in pain and agreed to see whoever was available.

Last night, he asked "well, are you in pain right now?" I wasn't, and I said so. I'd had a pretty brutal attack the night before so I tried to explain to him what it felt like. He cut me off and said "well, if you aren't in pain right now, I'm not giving you any narcotics."

I responded by pointing out that I had not asked for narcotics, did not want narcotics, and that it was in fact in my chart that I didn't want narcotics unless in extreme circumstances and only after discussing it (single mom, toddler, etc).

He didn't get any nicer after that. He said that he didn't think it was TN because my attacks last about 15-25 minutes on average and that, according to him, that's too long, that it should be 2-5 minutes. (I wish I'd printed out the fact sheets from here!)

He ended up prescribing my Tegretol to see if it worked, because Molina won't approve an MRI for "just any reason". I'm fine with that. I start it tonight (the pharmacy was already closed at this point).

Since he won't be my regular doctor, do you think it's appropriate to make a formal complaint about his behaviour? He left the room 3 times during my exam for no reason, and was just rude in general. I could hear him talking about me in the hall with one of the nurses (right next to my door) and he made me really frustrated.

Richard A. "Red" Lawhern said:

About your questions, Rosyln,

TN is not caused by stress, but many patients report breakthrough pain may occur more often when they are under stress. And FYI, "stress" is the body's reaction to uncontrolled emotional or physical change. So yes, both unusual unhappiness or distress AND unusual happiness can be triggers or facilitators for an outbreak of face pain.

What is the active ingredient in Nuragen? Quite a number of our members have tried topical creams. But the more effective tend to be in the family of Xylocaine and other anesthetics. The general rule of thumb is "do whatever works, but be aware of known dangers when there are any." That's one reason why it's very advisable for face pain patients to stay the heck away from alcoholic drinks. The known dangers there are significant, even if some patients believe they feel better when there is alcohol in their blood stream.

If any doctor accuses you of trying to fake something because you've done your homework, then (a) send them here, and (b) inform them nicely that the Pew Research Center has determined that about 2/3rds of all Internet users have researched potential health issues relating to their symptoms in major diseases or disorders, before they see a doctor. The appropriate response to any doctor who comes across this way aggressively is "get over yourself, doctor. You are my employee, not the other way around! And your patients will do better if you wise up and realize that they need to be members of their own health management team."

This latter is actually science rather than attitude. Though a lot of doctors have reservations on the research, there are strong indications that patients who have a strongly positive and supportive relationship with their physicians, actually do better on medical outcomes -- so much so, that distinct and repeatable changes occur in brain response as detected by Functional MRI. The opposite is also true: a bad relationship is associated with persistently worse outcomes. The effect is called "nocebo", relating as it does to "placebo".


Regarding disability support, yes it's possible if you have debilitating face pain that is unresponsive to medication or surgery. It takes some effort to establish that disability, and you'll need a strong relationship with a doctor who understands what he or she must do in order to help you qualify. Being on public assistance, your options for getting help to AVOID disability may be very limited. However, one of the links from our "Coping With Crisis" sub-page (Face Pain Info) will take you to a collection of online resources and 800 numbers which provide free or subsidized health care resources on the Net.

Once you're back from your appointment, you can start further research here. Suggest you begin with the TN Fact Sheet at the top of our main page, and then do some reading of articles in the Face Pain Info and Resources tabs.

Feel free to come back with more questions.

Regards

Red Lawhern, Ph.D.

Resident Research Analyst

8

Trying you on Tegretol may be appropriate. A positive response is an even more reliable diagnostic indicator than MRI. Leaving a treatment room without being called, could be just a matter of his wanting to look something up without the patient being aware of his ignorance. However, treating you like a drug seeker and failing to listen with attention are not acceptable practice. On the latter grounds, I'd say a complaint is justified or even warranted.

Regards, Red

9

Roselyn, I agree with Red, he could have been leaving the room to look up TN, many doctors aren’t really up to date with it and often need to refresh. The fact that he gave you Tegretol means he knows or read up that that is a first line of treatment.



That being said, give yourself time with the Tegretol. It takes time to build in your system and achieve adequate pain control. I noticed a difference within 48 hrs, but didn’t achieve full on relief of zaps for a few weeks. Tegretol has some initial side effects such as drowsiness and mild dizziness. You’ll feel foggy for awhile. Make sure you read up on the side effects and know when to call the doctor for serious side effects.

Often how you react to Tegretol is when they know you have TN, it’s a diagnostic tool.

But it doesn’t happen overnight. I ended up switching to a slow release version of Tegretol which works better for me.

Be patient with yourself in the days ahead and just listen to your body, don’t fight the drowsiness. Those initial side effects get better over time.

Hope you start to feel better, thinking of you. Mimi

10

I had an ER tell me I was just looking for narcotics and wasnt in pain..so I feel your pain quite litteraly and figuratively. I have also had doctors tell me my diagnosis was wrong or they had no clue how this works. One told me I would have an attacks for 10 days then it wouldnt come back for 10 years (no idea where the hell he got the 10 years from ) and another told me I couldnt possibly have attacks all day long...My first attack lasted 3 days straight before someone finally got me a correct diagnosis and meds. You will find, as you continue on here that you will become more informed than the average doctor.

My advice , study this as much as you can, then go see your regular doctor, and let them know how you were treated. No one deserves to be discounted

Wendy

Roselyn said:

Your response was really informative! Thank you!


I saw the new doctor last night, and to say I was less than impressed would be giving him too much credit. My actual PCP is out of town for 3 weeks, and when I made the appointment last week I was in pain and agreed to see whoever was available.

Last night, he asked "well, are you in pain right now?" I wasn't, and I said so. I'd had a pretty brutal attack the night before so I tried to explain to him what it felt like. He cut me off and said "well, if you aren't in pain right now, I'm not giving you any narcotics."

I responded by pointing out that I had not asked for narcotics, did not want narcotics, and that it was in fact in my chart that I didn't want narcotics unless in extreme circumstances and only after discussing it (single mom, toddler, etc).

He didn't get any nicer after that. He said that he didn't think it was TN because my attacks last about 15-25 minutes on average and that, according to him, that's too long, that it should be 2-5 minutes. (I wish I'd printed out the fact sheets from here!)

He ended up prescribing my Tegretol to see if it worked, because Molina won't approve an MRI for "just any reason". I'm fine with that. I start it tonight (the pharmacy was already closed at this point).

Since he won't be my regular doctor, do you think it's appropriate to make a formal complaint about his behaviour? He left the room 3 times during my exam for no reason, and was just rude in general. I could hear him talking about me in the hall with one of the nurses (right next to my door) and he made me really frustrated.

Richard A. "Red" Lawhern said:

About your questions, Rosyln,

TN is not caused by stress, but many patients report breakthrough pain may occur more often when they are under stress. And FYI, "stress" is the body's reaction to uncontrolled emotional or physical change. So yes, both unusual unhappiness or distress AND unusual happiness can be triggers or facilitators for an outbreak of face pain.

What is the active ingredient in Nuragen? Quite a number of our members have tried topical creams. But the more effective tend to be in the family of Xylocaine and other anesthetics. The general rule of thumb is "do whatever works, but be aware of known dangers when there are any." That's one reason why it's very advisable for face pain patients to stay the heck away from alcoholic drinks. The known dangers there are significant, even if some patients believe they feel better when there is alcohol in their blood stream.

If any doctor accuses you of trying to fake something because you've done your homework, then (a) send them here, and (b) inform them nicely that the Pew Research Center has determined that about 2/3rds of all Internet users have researched potential health issues relating to their symptoms in major diseases or disorders, before they see a doctor. The appropriate response to any doctor who comes across this way aggressively is "get over yourself, doctor. You are my employee, not the other way around! And your patients will do better if you wise up and realize that they need to be members of their own health management team."

This latter is actually science rather than attitude. Though a lot of doctors have reservations on the research, there are strong indications that patients who have a strongly positive and supportive relationship with their physicians, actually do better on medical outcomes -- so much so, that distinct and repeatable changes occur in brain response as detected by Functional MRI. The opposite is also true: a bad relationship is associated with persistently worse outcomes. The effect is called "nocebo", relating as it does to "placebo".


Regarding disability support, yes it's possible if you have debilitating face pain that is unresponsive to medication or surgery. It takes some effort to establish that disability, and you'll need a strong relationship with a doctor who understands what he or she must do in order to help you qualify. Being on public assistance, your options for getting help to AVOID disability may be very limited. However, one of the links from our "Coping With Crisis" sub-page (Face Pain Info) will take you to a collection of online resources and 800 numbers which provide free or subsidized health care resources on the Net.

Once you're back from your appointment, you can start further research here. Suggest you begin with the TN Fact Sheet at the top of our main page, and then do some reading of articles in the Face Pain Info and Resources tabs.

Feel free to come back with more questions.

Regards

Red Lawhern, Ph.D.

Resident Research Analyst