A Philosophy of the Atypical Pain: Seeking Clarification

General General TN & GPN (Old Site)
21

Hi All

I would like to clarify some points about my post before as I think it does have bearing on this subject



I am (was) diagnosed ATN and the symptoms were treated successfully by Tegratol. (Bloody useless spell check on iPads!!! Sorry)



I have type 2 TN on my Left side and type 1 TN on the Right side

Neither type crosses the mid line of my face. This took myself and the specialist/ s a long while to get to grips with.



At first they just said ATN and left it at that but now are happy with a diagnosis of bilateral TN type 1 and 2.



Note this diagnosis has taken 8 years and many many more MRI’s drug trials etc.



I can remember well the frustration and depression when I was first diagnosed as I understood what ATN to be not a positive one.

I had a headache issue / disorder that was adding to the mix that has been sorted mostly by Topomax. ( great for headache issues)



Now I know where I’m at and coping.



Re the TN type 1 and the TN type 2



I can say from my perspective ( and only from my perspective ) that between the long continuous burning pain and the sharp jolting pain the difference is the duration and the strength.

To me same nerve ( perhaps different sides)

Same triggers very similar pain just sharper deeper quicker or shallower and longer.

The type 1 shocks I have now are a very much reduced level ( but still very very painful) compared to the battle axe through the head type when not on meds.
What I am trying to relate is the medicated reduced pain on both sides as this is the only way I could dispassionately compare the two with any type of accuracy



It would be very hard to even contemplate comparing the sensations when not controlled by Gabapentin etc.



I probably don’t have the distance from the issue to form a an unbiased opinion

Sorry still have not dug up that quote



Simon

22

Hi Simon, this is very similar to what I experience with meds on type 1 TN. It has taken me the duration of my illness, which is not that long proportionately (around four months or so), to work out that this was occurring. I seem to be somewhat unusual in that my TN appears to be all in my mouth. Although it is triggered by wind, for example, it seems to be predominantly wind getting inside my mouth, when I talk, for example.

Because my illness onset with what I thought was tooth sensitivity, I have never been sure when I am crossing a line, or even if I am, away from or towards 'normal' sensitivity, so I am blundering around in the dark with a 'curing' dose.

When I first took Tegretol, it stopped the shocks at just 200mg. This was fabulous, but when I went out (or in), I still got a building crescendo of pain, a bit like a mountain ridge, with a high peak in the middle and lower peaks on either side. It took me a while to realise this pain came with exactly the same triggers. As the meds went up, the sensitivity came down commensurately, but, most interestingly, it also changed complexion slightly, so that I was never sure if it was the same pain. It was only the saving grace of the uniform triggers, which never really altered, that tipped me off that it was the same pain, just transfigured - it's inaccurate to say dulled - by the drugs.

The real clue for me was when my final increase of meds to 800mg of Tegretol gave me unmanageable side effects. I had to lower the dose again. The consultant was all for just dropping 200mg off the dose, but I wanted to do it more slowly and asked to come down 100mg at a time. She looked at me like I was nuts, but went along with it - thus proving neurologists don't always know what they're talking about!

Sure enough, I got a return of symptoms at only 700mg but, again very interestingly, shocks came back. Only for a day, and not quite as severe, but enough to scare the living bejesus out of me. I had to reassure myself constantly that I had been well on 600mg and this was 700mg, more drug, so it would settle again. And it did. But, the sensitivity was worse. More things set it off, and the pain level was higher again.

Likewise, when I came further down to 600mg, more sensitivity, deeper pain. More of a sensation that if you go much further down here, you will be back at shocks. It was then I realised that there was a variable pain scale, and it wasn't like you expected. It was random, felt different in quality, even in nature - the only thing that was uniform was the triggers. Always the same triggers.

My problem is my drugs have never been strong enough/good enough yet to take the sensitivity away. I kind of live a hairsbreadth from it slipping too high all the time. I still feel worried on windy days, going into warm rooms from chilly outdoors. This is complicated by the fact that I don't really have a baseline for this tooth that is the centre of my attacks because it was tampered with and I now no longer know what is normal with it. It's going to be a long drawn-out process, learning where the base line actually is.

But I think for your TN1 & TN2, you may have one half of your face at the shock stage while the other half is not as damaged and is kind of lagging behind at a lower level of pain which can actually feel quite different but you intuitively sense it isn't really. It's the same problem essentially on both sides, just not as evolved/devolved - depending on your point of view.

It's an interesting theory, and perhaps if neurologists clubbed together and compared data more they might find it's more common than they think. It might provide a breakthrough for ATN sufferers and it would certainly be helpful for TN sufferers, if they knew that this is how the drugs work, and not to be fazed or confused if your pain changes nature as the drugs go up or down.

SimonL said:

Hi All
I would like to clarify some points about my post before as I think it does have bearing on this subject

I am (was) diagnosed ATN and the symptoms were treated successfully by Tegratol. (Bloody useless spell check on iPads!!! Sorry)

I have type 2 TN on my Left side and type 1 TN on the Right side
Neither type crosses the mid line of my face. This took myself and the specialist/ s a long while to get to grips with.

At first they just said ATN and left it at that but now are happy with a diagnosis of bilateral TN type 1 and 2.

Note this diagnosis has taken 8 years and many many more MRI's drug trials etc.

I can remember well the frustration and depression when I was first diagnosed as I understood what ATN to be not a positive one.
I had a headache issue / disorder that was adding to the mix that has been sorted mostly by Topomax. ( great for headache issues)

Now I know where I'm at and coping.

Re the TN type 1 and the TN type 2

I can say from my perspective ( and only from my perspective ) that between the long continuous burning pain and the sharp jolting pain the difference is the duration and the strength.
To me same nerve ( perhaps different sides)
Same triggers very similar pain just sharper deeper quicker or shallower and longer.
The type 1 shocks I have now are a very much reduced level ( but still very very painful) compared to the battle axe through the head type when not on meds.
What I am trying to relate is the medicated reduced pain on both sides as this is the only way I could dispassionately compare the two with any type of accuracy

It would be very hard to even contemplate comparing the sensations when not controlled by Gabapentin etc.

I probably don't have the distance from the issue to form a an unbiased opinion
Sorry still have not dug up that quote

Simon
23

Just jumping in here with random thoughts and they may come out convoluted but I’m going to take a stab…

I was diagnosed with fibromyalgia in 1995 and more or less learned to roll with it. But in November 2009 I woke up in the middle of the night with deep piercing ear pain and yadayadayada…all the tests, different diagnosis, MRIs, pain spread, etc. and life has been chaos ever since.

The first neurologist I went to said it was fibro “gone to my head”… Meaning spread to head and face. However, I never, ever thought that the new pain was anything like the fibro pain and so persisted in finding other answers and so did my family doctor.

So one of my questions is: does this actually FEEL like fibro pain to you. Or does it feel like something else.

In my case Compressions were found, MVD last September for both 5th and 7th. A little improvement. I was being considered for having the 9th and top fibres of 10th cut. Went to top dog functional neurosurgeon here in BC last week and he says he thinks it’s possibly been a virus all along and that it’s neuropathy, even though I had compressions. Or something genetic. Or still possibility of late MS…but he has committed to finding a REAL diagnosis.

He did spend about 2 minutes in our hour and a half asking the routine “did you suffer really terrible childhood abuse” but we got over that in a hurry and he seemed apologetic asking. It is known that devastating early experiences changes how the brain develops and pain response is one of the factors. Even so, having early childhood experiences does not preclude that something else happened along the way to present symptoms: like a virus, etc.

Upon reflection the biggest change for me after the MVD has been my DYNAMIC to this illness. A bit of back story: My grandmother took to her rocking chair In her late 40s and never got up, eventually losing both legs. She was accused of being a hypochondriac but I always though there was something really tragic about her, something medical that was unknown at the time. What I don’t believe helped her was her coping strategy. She was curled down in pain. And here I was curled down in pain half a century later. This was really on my mind. When I was first diagnosed with fibro the best thing one doctor said to me was “keep moving no matter what”. This was sound advice and I was thinking a lot about that during recovery from MVD.

I decided to get back up and straighten up no matter what. I keep a watch on my posture. I’m not going back “down” again. In this regard it doesn’t matter what my disease is called. While I’m waiting to find answers I need to fight for my life. Looking at myself in the mirror seeing pain or catching myself all slumped over intensifies the pain feedback loop.

I need little accomplishments every day. And I need not to think about this all the time. It’s one thing to keep up with the latest research but it’s another thing to let it become my life. I have let that happen on occasion and it only intensifies the pain.

I believe the idea of the mind/body split is old and unhelpful. We live as one entity. And we need to stop talking as if there is a split. We need to not let others talk about us as if there is a split. So the very idea of AFP needs to be rejected because it is complacent and a dead end. We are not fragmented beings…mental entities being one thing, physical entities being another as if a plus or minus could be tallied up and out plops a diagnosis. We are human beings…whole beings. We need to follow all the leads. And we need to act as whole beings.

I’m glad that Dr. Casey has changed his mind in the last decade. This shows promise. The old Strike Back book is out of date in many ways.

So I have great doctors on my side who are current. But a big problem is the invisibility of the pain to others. I live alone but when I am with family and close friends I work really hard to mask the pain because I still need to be a person people like to be with. They know about the pain but it does no good to constantly remind myself or them.

So this is part of the challenge and here it becomes a kind of spiritual journey. How do I live live the best life I can given the reality of this pain? No matter what it is called.

Because pain builds more pain, and then there needs to be recovery, I opt for not letting it get too much out of hand when I can even if that means taking more meds…because then I can focus on something else, and do a little something, and that is a pain reliever in itself.

I hope there is a shred of clarity in my ramble and that I am not totally off base here.

Keep Heart
Bellalarke

24

After 19 years of dealing with this, I no longer care what is causing the pain. My concern is learning to live my life in spite of it. It has taken me years to come to the realization I have Tn, but it does not have me. Personally, I do not want the pain to control my life, and that is what I am focusing on. Thing is I do understand the fear about the MRI. I had it myself. Thing is in 13 years of medicine my neurosurgeon told me he has never seen a skull as thick as mine, in any of his patients. He was talking about all his patients, not just his TN ones. Goes to show I am literally thick headed. ;) I am learning a lot about the importance of keeping one's sense of humor, but that is a different story for another day.

As for Dr Casey, and the 7 point TN classification system, I know he, and the doctor that wrote it do not get along at all, and as such I am not surprised he took the stand he did on it.

Woman with the electric teeth said:

Hi Saraiderin, I couldn't be like that at all! I am desperate to know what is causing my TN. I have an MRI coming up shortly and live in terror & hope. Terror that it may come up blank, because what do I do then? And hope that it may offer something concrete so we can do something concrete. There is nothing worse than blundering around in the dark, but I get absolutely that if you have been in a lot of pain, for perhaps years, you are too damn worn out to care any more, you just want it to stop.

But the Substance P thing looks very interesting. I'm going to read up on that one. Thanks for the tip!

saraiderin said:

I am at a point in my life, I do not care what caused it, though during my first MVD, it was found I had bone pressing on the nerve. As for my ATN who knows? Personally, I do not see TN as a soft tissue disorder, but from what I am learning, it is faulty regulation of nerve excitability, which talks to brain function. I encourage you to research "Substance P." which causes inflammation, and is a major cause of Fibromyalgia.

25

This is really quite astounding.

1. I was diagnosed with fibromyalgia first, well before 1995, and learned to roll with it more or less. Xanax and Elavil teamed to make my body pain less awful than my face pain.

2. I took to calling my face pain “fibromyalgia of the face.”

3. I do not think that my face pain is like my body pain. Because I never had piercing pain, I have not to this day taken an MRI, or been asked to take one. So no compressions that I am aware of.

4. I have always thought it was linked to a virus. My doctor did diagnose me with “active Epstein-Barr, though never called it the cause of my pain. Up until recently I have suffered through days- and weeks-long periods of feeling chilled, as if I had a temperature, and general malaise. I don’t know why this burden was lifted, but I just hope I haven’t jinxed myself.

5. My father died when I was 3 (on my birthday!), and my mother couldn’t keep it together: threatened suicide my whole childhood. Is that enough to cause stress? You bet. Is that enough to cause a pain condition later in life? Who the hell knows?

6, Back story: my grandmother, who lived with us until she died when I was 12, was always complaining and my mother took her to clinics regularly where they would never find anything. My grandmother spoke little English, so I never even knew what it was she was complaining about. She sat in the living room chair all day talking to herself in Yiddish. I am embarrassed to admit I was not kind to her. I can’t recall if the poor woman ever smiled.

7. “Keep moving no matter what” is what I tell other people to do – and what I do when I am not being self-defeating. It amazes me that I know how much exercising, going to the supermarket, doing household chores, forestalls the onset of the day’s worst pain, and yet I still spend some days curled up. We/I still need the encouragement. Especially late at night, as I write this, as I can feel the pain building, and fight to remain mentally focused on what I want to type (my typing is a mess, so I edit a lot). There is a show I taped and a book I’m in the middle of, if, as is likely nowadays, I can’t get to sleep.

It should be remembered, however, there are people who have not yet found drug(s) that do anything to relieve the pain, so for them it is perhaps too easy to say, get up. Just get up. Those people have to keep trying to find better meds (and better doctors), whatever those meds might connote.

But you need not apologize for rambling. You need to give this advice over and over again.



Bellalarke said:

Just jumping in here with random thoughts and they may come out convoluted but I'm going to take a stab...

I was diagnosed with fibromyalgia in 1995 and more or less learned to roll with it. But in November 2009 I woke up in the middle of the night with deep piercing ear pain and yadayadayada...all the tests, different diagnosis, MRIs, pain spread, etc. and life has been chaos ever since.

The first neurologist I went to said it was fibro "gone to my head"... Meaning spread to head and face. However, I never, ever thought that the new pain was anything like the fibro pain and so persisted in finding other answers and so did my family doctor.

So one of my questions is: does this actually FEEL like fibro pain to you. Or does it feel like something else.

In my case Compressions were found, MVD last September for both 5th and 7th. A little improvement. I was being considered for having the 9th and top fibres of 10th cut. Went to top dog functional neurosurgeon here in BC last week and he says he thinks it's possibly been a virus all along and that it's neuropathy, even though I had compressions. Or something genetic. Or still possibility of late MS...but he has committed to finding a REAL diagnosis.

He did spend about 2 minutes in our hour and a half asking the routine "did you suffer really terrible childhood abuse" but we got over that in a hurry and he seemed apologetic asking. It is known that devastating early experiences changes how the brain develops and pain response is one of the factors. Even so, having early childhood experiences does not preclude that something else happened along the way to present symptoms: like a virus, etc.

Upon reflection the biggest change for me after the MVD has been my DYNAMIC to this illness. A bit of back story: My grandmother took to her rocking chair In her late 40s and never got up, eventually losing both legs. She was accused of being a hypochondriac but I always though there was something really tragic about her, something medical that was unknown at the time. What I don't believe helped her was her coping strategy. She was curled down in pain. And here I was curled down in pain half a century later. This was really on my mind. When I was first diagnosed with fibro the best thing one doctor said to me was "keep moving no matter what". This was sound advice and I was thinking a lot about that during recovery from MVD.

I decided to get back up and straighten up no matter what. I keep a watch on my posture. I'm not going back "down" again. In this regard it doesn't matter what my disease is called. While I'm waiting to find answers I need to fight for my life. Looking at myself in the mirror seeing pain or catching myself all slumped over intensifies the pain feedback loop.

I need little accomplishments every day. And I need not to think about this all the time. It's one thing to keep up with the latest research but it's another thing to let it become my life. I have let that happen on occasion and it only intensifies the pain.

I believe the idea of the mind/body split is old and unhelpful. We live as one entity. And we need to stop talking as if there is a split. We need to not let others talk about us as if there is a split. So the very idea of AFP needs to be rejected because it is complacent and a dead end. We are not fragmented beings...mental entities being one thing, physical entities being another as if a plus or minus could be tallied up and out plops a diagnosis. We are human beings...whole beings. We need to follow all the leads. And we need to act as whole beings.

I'm glad that Dr. Casey has changed his mind in the last decade. This shows promise. The old Strike Back book is out of date in many ways.

So I have great doctors on my side who are current. But a big problem is the invisibility of the pain to others. I live alone but when I am with family and close friends I work really hard to mask the pain because I still need to be a person people like to be with. They know about the pain but it does no good to constantly remind myself or them.

So this is part of the challenge and here it becomes a kind of spiritual journey. How do I live live the best life I can given the reality of this pain? No matter what it is called.

Because pain builds more pain, and then there needs to be recovery, I opt for not letting it get too much out of hand when I can even if that means taking more meds...because then I can focus on something else, and do a little something, and that is a pain reliever in itself.

I hope there is a shred of clarity in my ramble and that I am not totally off base here.

Keep Heart
Bellalarke
26

I take it as prescribed, though I get a chance to influence timing and dosage strength by reciting my experience to a doctor. This prescription has taken me thru a general practitioner, a neurologist, a rheumatologist, and is now written by a psychiatrist. After 30 years, I have kept daily dosage to 3g/day, though recently was given permission to go to 4g as needed. I am well aware of the effects of missing even one dosing. 9 years ago, I went into a chemical dependency program for 5 days and was afterwards put on Neurontin. 5 days is probably too soon, because the period after I was discharged was sheer hell: some combo of Xanax withdrawal symptoms and the messy acclimation to Neurontin -- about a month, during which daily dosage grew to as much as 3000 mg, without benefit. I basically collapsed in the doctor's office after an arduous trip there via bus, train, and walking. The experiment was thus concluded. The question is, for anyone trying to kick the habit: what are they supposed to do about the pain? Perhaps you watched "House," about a doctor who pops Vicodin for pain. What happens to the pain once the drug habit is tamed?

Cleo said:

Howard, sometimes missing one dose of Xanax as long as you've been on it can cause its own set of issues. That's why I asked if you take it as needed or as directed.

The following symptoms may emerge during gradual or abrupt dosage reduction:

An abrupt or over-rapid discontinuation of benzodiazepines may result in a more serious and very unpleasant withdrawal syndrome that may additionally result in:

As withdrawal progresses, patients often find their physical and mental health improves with improved

27

Couldn't agree more, Saraiderin. I think those lost in bemoaning their fate, complaining about everything from the health service to the drugs themselves are exactly that, lost. I think it's a kind of denial: while they are complaining about everything they don't need to face what has happened to them - it is all someone else's fault.

While I get that it is tough (I cried myself yesterday) and optimism can be very hard work, there is a lot to be thankful for. Had we all been born in the 1700s or even the 1800s, we would have no respite from our pain at all - no drugs, no surgery and no comprehension from our doctors - if we'd been lucky enough to be born into a class that could afford doctors. We're doing pretty well, all things considered!

saraiderin said:

After 19 years of dealing with this, I no longer care what is causing the pain. My concern is learning to live my life in spite of it. It has taken me years to come to the realization I have Tn, but it does not have me. Personally, I do not want the pain to control my life, and that is what I am focusing on. Thing is I do understand the fear about the MRI. I had it myself. Thing is in 13 years of medicine my neurosurgeon told me he has never seen a skull as thick as mine, in any of his patients. He was talking about all his patients, not just his TN ones. Goes to show I am literally thick headed. ;) I am learning a lot about the importance of keeping one's sense of humor, but that is a different story for another day.

As for Dr Casey, and the 7 point TN classification system, I know he, and the doctor that wrote it do not get along at all, and as such I am not surprised he took the stand he did on it.

Woman with the electric teeth said:

Hi Saraiderin, I couldn't be like that at all! I am desperate to know what is causing my TN. I have an MRI coming up shortly and live in terror & hope. Terror that it may come up blank, because what do I do then? And hope that it may offer something concrete so we can do something concrete. There is nothing worse than blundering around in the dark, but I get absolutely that if you have been in a lot of pain, for perhaps years, you are too damn worn out to care any more, you just want it to stop.

But the Substance P thing looks very interesting. I'm going to read up on that one. Thanks for the tip!

saraiderin said:

I am at a point in my life, I do not care what caused it, though during my first MVD, it was found I had bone pressing on the nerve. As for my ATN who knows? Personally, I do not see TN as a soft tissue disorder, but from what I am learning, it is faulty regulation of nerve excitability, which talks to brain function. I encourage you to research "Substance P." which causes inflammation, and is a major cause of Fibromyalgia.

28

I am absolutely astounded, Howard, that you have never had an MRI. Why ever not?! Surely with persistent face/head pain it's the obvious thing to do??? Sorry, I am just flabbergasted at that.

It's also quite alarming how much your life is mirroring your grandmother's and to a lesser extent your mother's. I'm absolutely sure if you have had psychological help in the past this has been brought up - that you are a malingering child of two previous generations of malingerers? In other words, that your present condition/s are learned behaviour?

Does it not worry you that perhaps you go into medical consultations with too much of this at the forefront of your mind? That you are casting yourself in that role before anything medical has even been suggested? This has to have played a part in why you have never had an MRI suggested to you. Why have you never insisted on one yourself? Surely, with head pain, looking inside your head has to be first port of call?

I'm sorry, but that oversight really is odd to me.....
thehoward said:

This is really quite astounding.

1. I was diagnosed with fibromyalgia first, well before 1995, and learned to roll with it more or less. Xanax and Elavil teamed to make my body pain less awful than my face pain.

2. I took to calling my face pain “fibromyalgia of the face.”

3. I do not think that my face pain is like my body pain. Because I never had piercing pain, I have not to this day taken an MRI, or been asked to take one. So no compressions that I am aware of.

4. I have always thought it was linked to a virus. My doctor did diagnose me with “active Epstein-Barr, though never called it the cause of my pain. Up until recently I have suffered through days- and weeks-long periods of feeling chilled, as if I had a temperature, and general malaise. I don’t know why this burden was lifted, but I just hope I haven’t jinxed myself.

5. My father died when I was 3 (on my birthday!), and my mother couldn’t keep it together: threatened suicide my whole childhood. Is that enough to cause stress? You bet. Is that enough to cause a pain condition later in life? Who the hell knows?

6, Back story: my grandmother, who lived with us until she died when I was 12, was always complaining and my mother took her to clinics regularly where they would never find anything. My grandmother spoke little English, so I never even knew what it was she was complaining about. She sat in the living room chair all day talking to herself in Yiddish. I am embarrassed to admit I was not kind to her. I can’t recall if the poor woman ever smiled.

7. “Keep moving no matter what” is what I tell other people to do – and what I do when I am not being self-defeating. It amazes me that I know how much exercising, going to the supermarket, doing household chores, forestalls the onset of the day’s worst pain, and yet I still spend some days curled up. We/I still need the encouragement. Especially late at night, as I write this, as I can feel the pain building, and fight to remain mentally focused on what I want to type (my typing is a mess, so I edit a lot). There is a show I taped and a book I’m in the middle of, if, as is likely nowadays, I can’t get to sleep.

It should be remembered, however, there are people who have not yet found drug(s) that do anything to relieve the pain, so for them it is perhaps too easy to say, get up. Just get up. Those people have to keep trying to find better meds (and better doctors), whatever those meds might connote.

But you need not apologize for rambling. You need to give this advice over and over again.



Bellalarke said:

Just jumping in here with random thoughts and they may come out convoluted but I'm going to take a stab...

I was diagnosed with fibromyalgia in 1995 and more or less learned to roll with it. But in November 2009 I woke up in the middle of the night with deep piercing ear pain and yadayadayada...all the tests, different diagnosis, MRIs, pain spread, etc. and life has been chaos ever since.

The first neurologist I went to said it was fibro "gone to my head"... Meaning spread to head and face. However, I never, ever thought that the new pain was anything like the fibro pain and so persisted in finding other answers and so did my family doctor.

So one of my questions is: does this actually FEEL like fibro pain to you. Or does it feel like something else.

In my case Compressions were found, MVD last September for both 5th and 7th. A little improvement. I was being considered for having the 9th and top fibres of 10th cut. Went to top dog functional neurosurgeon here in BC last week and he says he thinks it's possibly been a virus all along and that it's neuropathy, even though I had compressions. Or something genetic. Or still possibility of late MS...but he has committed to finding a REAL diagnosis.

He did spend about 2 minutes in our hour and a half asking the routine "did you suffer really terrible childhood abuse" but we got over that in a hurry and he seemed apologetic asking. It is known that devastating early experiences changes how the brain develops and pain response is one of the factors. Even so, having early childhood experiences does not preclude that something else happened along the way to present symptoms: like a virus, etc.

Upon reflection the biggest change for me after the MVD has been my DYNAMIC to this illness. A bit of back story: My grandmother took to her rocking chair In her late 40s and never got up, eventually losing both legs. She was accused of being a hypochondriac but I always though there was something really tragic about her, something medical that was unknown at the time. What I don't believe helped her was her coping strategy. She was curled down in pain. And here I was curled down in pain half a century later. This was really on my mind. When I was first diagnosed with fibro the best thing one doctor said to me was "keep moving no matter what". This was sound advice and I was thinking a lot about that during recovery from MVD.

I decided to get back up and straighten up no matter what. I keep a watch on my posture. I'm not going back "down" again. In this regard it doesn't matter what my disease is called. While I'm waiting to find answers I need to fight for my life. Looking at myself in the mirror seeing pain or catching myself all slumped over intensifies the pain feedback loop.

I need little accomplishments every day. And I need not to think about this all the time. It's one thing to keep up with the latest research but it's another thing to let it become my life. I have let that happen on occasion and it only intensifies the pain.

I believe the idea of the mind/body split is old and unhelpful. We live as one entity. And we need to stop talking as if there is a split. We need to not let others talk about us as if there is a split. So the very idea of AFP needs to be rejected because it is complacent and a dead end. We are not fragmented beings...mental entities being one thing, physical entities being another as if a plus or minus could be tallied up and out plops a diagnosis. We are human beings...whole beings. We need to follow all the leads. And we need to act as whole beings.

I'm glad that Dr. Casey has changed his mind in the last decade. This shows promise. The old Strike Back book is out of date in many ways.

So I have great doctors on my side who are current. But a big problem is the invisibility of the pain to others. I live alone but when I am with family and close friends I work really hard to mask the pain because I still need to be a person people like to be with. They know about the pain but it does no good to constantly remind myself or them.

So this is part of the challenge and here it becomes a kind of spiritual journey. How do I live live the best life I can given the reality of this pain? No matter what it is called.

Because pain builds more pain, and then there needs to be recovery, I opt for not letting it get too much out of hand when I can even if that means taking more meds...because then I can focus on something else, and do a little something, and that is a pain reliever in itself.

I hope there is a shred of clarity in my ramble and that I am not totally off base here.

Keep Heart
Bellalarke
29

Woman With the Electric Teeth Shocks

I hardly know what to say.

You can express “astonishment” all you like. What you can’t do is hurl invective. I am stunned to find someone so much in the know, and supposedly attuned to the way members of a group like this one need to interact, would think that your response to my story, which I tell on this site in a trusting way, is appropriate in tone or even content. There is unkindness here.

There are answers for you here. Maybe they will explain. I’ll preface this all by saying, yes, for all my education, I can be an idiot about some things. Maybe you’re perfect.

About 40 years ago, I came down with a virus-like condition that lasted for several months and resolved into body pain. It was accompanied by what I would call pressure, the boring feeling of TN2. Only there was no name for it then. I cannot account for it by any mental condition I was in at the time and set out from the beginning to look for a medical cure. I was sent to a neurologist who diagnosed it as fibromyalgia. The pain and pressure waned toward my late 20s, but the virus/pain erupted again in my early 30s. The pressure in my head turned into pain, and I had every reason to believe that my head pain was caused by the same thing that caused my body pain. The virus was a precursor to each eruption. And the fact that my meds worked on both reinforced this belief. Still, my pain persisted, so he sent me to a physician who taught me biofeedback, guiding meditation, and treated me with TENS. They didn’t give MRIs (certainly not for the body) back then – AND there were no groups quite like this. I then went to a rheumatologist who confirmed the diagnosis of fibromyalgia and found further that I had “’active ‘ Epstein-Barr virus” and “atypical facial pain.” I have no idea when MRIs became fashionable, but my doctor came to believe that if they could “cut me open and took a look at what’s happening in there, they would see nothing.” I did not agree, and emphatically argued the other side of the case (which is what I do here). I insisted on a second opinion about the AFP and got one, confirming his. In general, I could find little support for the medical view I preferred to take. I believed then, and still do now, that a virus was linked to the pain. And I know that, as a rule, viruses are self-limiting. Still, I tried many drugs and alternative therapies over the years. My rheumy even used acupuncture, sometimes combined with TENS. I read the literature. Decades went by. There was talk about Substance P among sufferers of fibromyalgia. I was aware of the research. I subscribed to a newsletter. But it has not, to my knowledge, led to any new treatment. I discontinued my subscription.

What I did was go ahead and live my life. Actually, this third-generation “malingerer” did what the first 2 could not come anywhere near doing: write a doctoral thesis, teach, and then hold down, even excel at, a full-time job of some challenge in business -- and provide for my wife and two children, all of whom had a claim on my love and caring, as long as I was able to provide it, and as much as I was able to provide.

In my 50s it became apparent that I was suffering cognitive loss from the pain (on top of the normal “fibromyalgia fog“ and the normal disorientation from head pressure/burning), as well as the meds that I took for it. The drugs were having a sedative effect, amplified by the aging process no doubt, and these were compromising my work product. Ultimately, I would file for disability. Like many people here, I could have claimed disability decades earlier, but I wouldn’t have got it. God knows how my family would have gotten along on one small salary. My wife has been the primary breadwinner for some years now and I am most grateful for it. She has been thru a hell of lot with me.

Malingerer? When you say my “present condition/s are a learned behavior,” it is not entirely clear what you mean. Indeed, your reference to “condition/s” reveals you aren’t sure what you mean either. Is it that my pain is in fact bodily, but because I’ve learned to present myself as emotionally wracked, that was an invitation to doctors to call the pain mental? How would you know such a thing?! It is presumptuous to say the least. And if it were true, your answer is to call me a malingerer?

It is all so “obvious” to you what I should have done. In what year should it have become obvious to me? I had not even heard of TN until recently. It was only after I suffered 2 mild strokes, had an emergency angioplasty, and, finally, got disability (more because of depression than pain) that I stumbled upon this group and found Stef’s article about the proposed new typology, and all it says is “TN, we don’t know how or why,” even though TN2 and TN1 pain are completely different. I found nothing for years on “atypical facial pain,” and the TN literature couldn’t explain my pain either. So I got another “atypical” diagnosis – actually, I gave it to myself, and the neurologist I went to after my stroke knows too little about TN to suggest a different course of action. He basically took my own rediagnosis at face value, saying he would prescribe Elavil no matter what we called the pain. I think it’s pretty recent for anyone to even suggest that you might find compression in a TN2 patient. Nor was it likely to be helped by an MVD. Is that changing? That is what I was asking about (”are there any markers?”) in my last few posts.

Indeed, I would like to know, what percentage of the TN2 subgroup at this site have had MRIs. And in how many cases were compressions found? How many had MVDs and how many were successful? If my views are akin to those who claim cowboys rode dinosaurs, then I ought to be schooled. Perhaps I’ve been an idiot. Give me facts, not hostility.

As for your computer chair diagnosis of me, I do not believe my pain is the product of depression, so, no, I don’t present my case to doctors that way. But I don’t hide my depression either (should I?). Neither do I fight a war over whether the cause could be (partly) mental. That, it seems, is what offends you most. That anyone should even concede the possibility of a role for mental causes. Sorry, my mind/brain may be in pain, but it is open. If it turns out I’m the flabbergasting nutcase malingerer you describe, then maybe it is all in my head. I would then be a marginalized figure in a group of the marginalized. In this enlightened age, where everyone knows that no facial pain has a mental component among its causes, I would be an atypical atypical. Seems to me you are the one trading in stigmas now. Exactly the opposite of what we’re supposed to be about here. I feel betrayed.

Woman with the electric teeth said:

I am absolutely astounded, Howard, that you have never had an MRI. Why ever not?! Surely with persistent face/head pain it's the obvious thing to do??? Sorry, I am just flabbergasted at that.

It's also quite alarming how much your life is mirroring your grandmother's and to a lesser extent your mother's. I'm absolutely sure if you have had psychological help in the past this has been brought up - that you are a malingering child of two previous generations of malingerers? In other words, that your present condition/s are learned behaviour?

Does it not worry you that perhaps you go into medical consultations with too much of this at the forefront of your mind? That you are casting yourself in that role before anything medical has even been suggested? This has to have played a part in why you have never had an MRI suggested to you. Why have you never insisted on one yourself? Surely, with head pain, looking inside your head has to be first port of call?

I'm sorry, but that oversight really is odd to me.....
thehoward said:

This is really quite astounding.

1. I was diagnosed with fibromyalgia first, well before 1995, and learned to roll with it more or less. Xanax and Elavil teamed to make my body pain less awful than my face pain.

2. I took to calling my face pain “fibromyalgia of the face.”

3. I do not think that my face pain is like my body pain. Because I never had piercing pain, I have not to this day taken an MRI, or been asked to take one. So no compressions that I am aware of.

4. I have always thought it was linked to a virus. My doctor did diagnose me with “active Epstein-Barr, though never called it the cause of my pain. Up until recently I have suffered through days- and weeks-long periods of feeling chilled, as if I had a temperature, and general malaise. I don’t know why this burden was lifted, but I just hope I haven’t jinxed myself.

5. My father died when I was 3 (on my birthday!), and my mother couldn’t keep it together: threatened suicide my whole childhood. Is that enough to cause stress? You bet. Is that enough to cause a pain condition later in life? Who the hell knows?

6, Back story: my grandmother, who lived with us until she died when I was 12, was always complaining and my mother took her to clinics regularly where they would never find anything. My grandmother spoke little English, so I never even knew what it was she was complaining about. She sat in the living room chair all day talking to herself in Yiddish. I am embarrassed to admit I was not kind to her. I can’t recall if the poor woman ever smiled.

7. “Keep moving no matter what” is what I tell other people to do – and what I do when I am not being self-defeating. It amazes me that I know how much exercising, going to the supermarket, doing household chores, forestalls the onset of the day’s worst pain, and yet I still spend some days curled up. We/I still need the encouragement. Especially late at night, as I write this, as I can feel the pain building, and fight to remain mentally focused on what I want to type (my typing is a mess, so I edit a lot). There is a show I taped and a book I’m in the middle of, if, as is likely nowadays, I can’t get to sleep.

It should be remembered, however, there are people who have not yet found drug(s) that do anything to relieve the pain, so for them it is perhaps too easy to say, get up. Just get up. Those people have to keep trying to find better meds (and better doctors), whatever those meds might connote.

But you need not apologize for rambling. You need to give this advice over and over again.



Bellalarke said:

Just jumping in here with random thoughts and they may come out convoluted but I'm going to take a stab...

I was diagnosed with fibromyalgia in 1995 and more or less learned to roll with it. But in November 2009 I woke up in the middle of the night with deep piercing ear pain and yadayadayada...all the tests, different diagnosis, MRIs, pain spread, etc. and life has been chaos ever since.

The first neurologist I went to said it was fibro "gone to my head"... Meaning spread to head and face. However, I never, ever thought that the new pain was anything like the fibro pain and so persisted in finding other answers and so did my family doctor.

So one of my questions is: does this actually FEEL like fibro pain to you. Or does it feel like something else.

In my case Compressions were found, MVD last September for both 5th and 7th. A little improvement. I was being considered for having the 9th and top fibres of 10th cut. Went to top dog functional neurosurgeon here in BC last week and he says he thinks it's possibly been a virus all along and that it's neuropathy, even though I had compressions. Or something genetic. Or still possibility of late MS...but he has committed to finding a REAL diagnosis.

He did spend about 2 minutes in our hour and a half asking the routine "did you suffer really terrible childhood abuse" but we got over that in a hurry and he seemed apologetic asking. It is known that devastating early experiences changes how the brain develops and pain response is one of the factors. Even so, having early childhood experiences does not preclude that something else happened along the way to present symptoms: like a virus, etc.

Upon reflection the biggest change for me after the MVD has been my DYNAMIC to this illness. A bit of back story: My grandmother took to her rocking chair In her late 40s and never got up, eventually losing both legs. She was accused of being a hypochondriac but I always though there was something really tragic about her, something medical that was unknown at the time. What I don't believe helped her was her coping strategy. She was curled down in pain. And here I was curled down in pain half a century later. This was really on my mind. When I was first diagnosed with fibro the best thing one doctor said to me was "keep moving no matter what". This was sound advice and I was thinking a lot about that during recovery from MVD.

I decided to get back up and straighten up no matter what. I keep a watch on my posture. I'm not going back "down" again. In this regard it doesn't matter what my disease is called. While I'm waiting to find answers I need to fight for my life. Looking at myself in the mirror seeing pain or catching myself all slumped over intensifies the pain feedback loop.

I need little accomplishments every day. And I need not to think about this all the time. It's one thing to keep up with the latest research but it's another thing to let it become my life. I have let that happen on occasion and it only intensifies the pain.

I believe the idea of the mind/body split is old and unhelpful. We live as one entity. And we need to stop talking as if there is a split. We need to not let others talk about us as if there is a split. So the very idea of AFP needs to be rejected because it is complacent and a dead end. We are not fragmented beings...mental entities being one thing, physical entities being another as if a plus or minus could be tallied up and out plops a diagnosis. We are human beings...whole beings. We need to follow all the leads. And we need to act as whole beings.

I'm glad that Dr. Casey has changed his mind in the last decade. This shows promise. The old Strike Back book is out of date in many ways.

So I have great doctors on my side who are current. But a big problem is the invisibility of the pain to others. I live alone but when I am with family and close friends I work really hard to mask the pain because I still need to be a person people like to be with. They know about the pain but it does no good to constantly remind myself or them.

So this is part of the challenge and here it becomes a kind of spiritual journey. How do I live live the best life I can given the reality of this pain? No matter what it is called.

Because pain builds more pain, and then there needs to be recovery, I opt for not letting it get too much out of hand when I can even if that means taking more meds...because then I can focus on something else, and do a little something, and that is a pain reliever in itself.

I hope there is a shred of clarity in my ramble and that I am not totally off base here.

Keep Heart
Bellalarke
30

Sorry, is this link correct? Because I don't see the relevance. Are you worried about I will become a wife batterer?

Cleo said:

I don't watch TV that often so I have never seen House. But here is a story of a doctor and his wife in my town that popped way too many pain killers just a few short years ago!

http://www.cleveland.com/chagrinsolonsun/index.ssf/2010/05/sandra_f...

31

This is not right. What is to some people aptly called the "suicide disease" (even if it is not a statistically justified truth) has now become a trifle in the grand scheme of things, because other people in earlier times and even in our times experienced far more horror in life. You can't come on here and straight out call victims of this dreaded condition crybabies. I don't like comparing different people's level of horror, especially when many are still searching for treatment modalities that provide the minimum basis for "putting things in perspective." I assume you have found this foundation for yourself. Not all are so lucky. Some find it, then lose it all at once or over time. Once again, when the appropriate tone is caring, the one you offer is chastisement. I very much regret that this thread has become personal, but you don't go around calling people malingerers and crybabies and expect people not to take it personally. How many will now lack the courage to post here, knowing you are hiding in the weeds, waiting for you to label them as self-pitying, other-blaming wretches. You're damaging the environment. This is a refuge for people who are still trying to figure out how they will make it until tomorrow. You've got it under control? Fine. Congratulations. But not everyone does. This is the place to release self-pity, because others cannot bear to hear it, and one needs people who can empathize. Eventually, one is able, to go out and try to live the semblance of a normal life for yourself and the one's you love. Electric woman, you can share your wisdom here but your mode of giving advice is not a tonic for the weak. It is an affront. You say you cried yesterday. Over what? Is there a time limit on crying? Disdain "the weak" if you like, but don't do it publicly.


Woman with the electric teeth said:

Couldn't agree more, Saraiderin. I think those lost in bemoaning their fate, complaining about everything from the health service to the drugs themselves are exactly that, lost. I think it's a kind of denial: while they are complaining about everything they don't need to face what has happened to them - it is all someone else's fault.

While I get that it is tough (I cried myself yesterday) and optimism can be very hard work, there is a lot to be thankful for. Had we all been born in the 1700s or even the 1800s, we would have no respite from our pain at all - no drugs, no surgery and no comprehension from our doctors - if we'd been lucky enough to be born into a class that could afford doctors. We're doing pretty well, all things considered!

saraiderin said:

After 19 years of dealing with this, I no longer care what is causing the pain. My concern is learning to live my life in spite of it. It has taken me years to come to the realization I have Tn, but it does not have me. Personally, I do not want the pain to control my life, and that is what I am focusing on. Thing is I do understand the fear about the MRI. I had it myself. Thing is in 13 years of medicine my neurosurgeon told me he has never seen a skull as thick as mine, in any of his patients. He was talking about all his patients, not just his TN ones. Goes to show I am literally thick headed. ;) I am learning a lot about the importance of keeping one's sense of humor, but that is a different story for another day.

As for Dr Casey, and the 7 point TN classification system, I know he, and the doctor that wrote it do not get along at all, and as such I am not surprised he took the stand he did on it.

Woman with the electric teeth said:

Hi Saraiderin, I couldn't be like that at all! I am desperate to know what is causing my TN. I have an MRI coming up shortly and live in terror & hope. Terror that it may come up blank, because what do I do then? And hope that it may offer something concrete so we can do something concrete. There is nothing worse than blundering around in the dark, but I get absolutely that if you have been in a lot of pain, for perhaps years, you are too damn worn out to care any more, you just want it to stop.

But the Substance P thing looks very interesting. I'm going to read up on that one. Thanks for the tip!

saraiderin said:

I am at a point in my life, I do not care what caused it, though during my first MVD, it was found I had bone pressing on the nerve. As for my ATN who knows? Personally, I do not see TN as a soft tissue disorder, but from what I am learning, it is faulty regulation of nerve excitability, which talks to brain function. I encourage you to research "Substance P." which causes inflammation, and is a major cause of Fibromyalgia.

32

Howard, we seem to be talking at some terrible cross-purpose here. I'm on your side.

You'll note in my comments that I say that if you have been for psychological help in the past then surely some psychologist/psychiatrist brought up the possibility that you are a malingerer, purely because there is a family history of it. That's why there is question marks on all those comments, because they are questions. I am not saying for one instant that you are a malingerer, but I assumed that a psychiatrist would have suggested that you might be, because you'd had that set as an example to you.

I then go on to clarify, as I thought, that given that they might have put this idea in your head, it could be a concern that this might be colouring MDs take on your problem, to quote my comment: "Does it not worry you that perhaps you go into medical consultations with too much of this at the forefront of your mind? That you are casting yourself in that role before anything medical has even been suggested?" In other words, that you might have internalised psychiatrists' beliefs that you are merely reproducing your mother's and grandmother's behaviour, and you are unintentionally giving doctors an out not to take your situation as seriously as they might take someone's who has no history of malingering (not your malingering, your family's).

I then suggest that you are putting yourself at a tremendous disadvantage, if this is what's going on, by unintentionally casting yourself in the role of a mentally ill person when really you have a medical complaint.

Lastly, my horror that you haven't had an MRI is purely sympathy for you. It's unfathomable to me that you can have real physical pain in your head and face and no-one has ever thought to give you an MRI. To me, it looks like you are buying into the psychiatrists' picture of yourself because you appear to have accepted this as the status quo. This feels very wrong to me. If you have a medical problem it should be being treated as a medical problem, not a mental illness.

I am sorry if I was in any way unclear about what I thought, obviously that was not my intention. I can only repeat that I am on your side vis a vis your pain, and to me that means a rigorous test, like an MRI. I can't apologise for believing that because I still think it is true.

I should just conclude by saying that I was using the term malingerer in the medical sense, when it "is sometimes used as a name for an assortment of otherwise difficult to classify cases". I perhaps also ran away with the idea of psychiatrists suggesting you were merely following in your family's footsteps when in fact no-one has ever said anything of the kind to you, and so I have baffled, confused and insulted you. Once again, I apologise - not my intention - just too quick off the mark making assumptions and rushing in to offer support.

thehoward said:

Woman With the Electric Teeth Shocks

I hardly know what to say.

You can express “astonishment” all you like. What you can’t do is hurl invective. I am stunned to find someone so much in the know, and supposedly attuned to the way members of a group like this one need to interact, would think that your response to my story, which I tell on this site in a trusting way, is appropriate in tone or even content. There is unkindness here.

There are answers for you here. Maybe they will explain. I’ll preface this all by saying, yes, for all my education, I can be an idiot about some things. Maybe you’re perfect.

About 40 years ago, I came down with a virus-like condition that lasted for several months and resolved into body pain. It was accompanied by what I would call pressure, the boring feeling of TN2. Only there was no name for it then. I cannot account for it by any mental condition I was in at the time and set out from the beginning to look for a medical cure. I was sent to a neurologist who diagnosed it as fibromyalgia. The pain and pressure waned toward my late 20s, but the virus/pain erupted again in my early 30s. The pressure in my head turned into pain, and I had every reason to believe that my head pain was caused by the same thing that caused my body pain. The virus was a precursor to each eruption. And the fact that my meds worked on both reinforced this belief. Still, my pain persisted, so he sent me to a physician who taught me biofeedback, guiding meditation, and treated me with TENS. They didn’t give MRIs (certainly not for the body) back then – AND there were no groups quite like this. I then went to a rheumatologist who confirmed the diagnosis of fibromyalgia and found further that I had “’active ‘ Epstein-Barr virus” and “atypical facial pain.” I have no idea when MRIs became fashionable, but my doctor came to believe that if they could “cut me open and took a look at what’s happening in there, they would see nothing.” I did not agree, and emphatically argued the other side of the case (which is what I do here). I insisted on a second opinion about the AFP and got one, confirming his. In general, I could find little support for the medical view I preferred to take. I believed then, and still do now, that a virus was linked to the pain. And I know that, as a rule, viruses are self-limiting. Still, I tried many drugs and alternative therapies over the years. My rheumy even used acupuncture, sometimes combined with TENS. I read the literature. Decades went by. There was talk about Substance P among sufferers of fibromyalgia. I was aware of the research. I subscribed to a newsletter. But it has not, to my knowledge, led to any new treatment. I discontinued my subscription.

What I did was go ahead and live my life. Actually, this third-generation “malingerer” did what the first 2 could not come anywhere near doing: write a doctoral thesis, teach, and then hold down, even excel at, a full-time job of some challenge in business -- and provide for my wife and two children, all of whom had a claim on my love and caring, as long as I was able to provide it, and as much as I was able to provide.

In my 50s it became apparent that I was suffering cognitive loss from the pain (on top of the normal “fibromyalgia fog“ and the normal disorientation from head pressure/burning), as well as the meds that I took for it. The drugs were having a sedative effect, amplified by the aging process no doubt, and these were compromising my work product. Ultimately, I would file for disability. Like many people here, I could have claimed disability decades earlier, but I wouldn’t have got it. God knows how my family would have gotten along on one small salary. My wife has been the primary breadwinner for some years now and I am most grateful for it. She has been thru a hell of lot with me.

Malingerer? When you say my “present condition/s are a learned behavior,” it is not entirely clear what you mean. Indeed, your reference to “condition/s” reveals you aren’t sure what you mean either. Is it that my pain is in fact bodily, but because I’ve learned to present myself as emotionally wracked, that was an invitation to doctors to call the pain mental? How would you know such a thing?! It is presumptuous to say the least. And if it were true, your answer is to call me a malingerer?

It is all so “obvious” to you what I should have done. In what year should it have become obvious to me? I had not even heard of TN until recently. It was only after I suffered 2 mild strokes, had an emergency angioplasty, and, finally, got disability (more because of depression than pain) that I stumbled upon this group and found Stef’s article about the proposed new typology, and all it says is “TN, we don’t know how or why,” even though TN2 and TN1 pain are completely different. I found nothing for years on “atypical facial pain,” and the TN literature couldn’t explain my pain either. So I got another “atypical” diagnosis – actually, I gave it to myself, and the neurologist I went to after my stroke knows too little about TN to suggest a different course of action. He basically took my own rediagnosis at face value, saying he would prescribe Elavil no matter what we called the pain. I think it’s pretty recent for anyone to even suggest that you might find compression in a TN2 patient. Nor was it likely to be helped by an MVD. Is that changing? That is what I was asking about (”are there any markers?”) in my last few posts.

Indeed, I would like to know, what percentage of the TN2 subgroup at this site have had MRIs. And in how many cases were compressions found? How many had MVDs and how many were successful? If my views are akin to those who claim cowboys rode dinosaurs, then I ought to be schooled. Perhaps I’ve been an idiot. Give me facts, not hostility.

As for your computer chair diagnosis of me, I do not believe my pain is the product of depression, so, no, I don’t present my case to doctors that way. But I don’t hide my depression either (should I?). Neither do I fight a war over whether the cause could be (partly) mental. That, it seems, is what offends you most. That anyone should even concede the possibility of a role for mental causes. Sorry, my mind/brain may be in pain, but it is open. If it turns out I’m the flabbergasting nutcase malingerer you describe, then maybe it is all in my head. I would then be a marginalized figure in a group of the marginalized. In this enlightened age, where everyone knows that no facial pain has a mental component among its causes, I would be an atypical atypical. Seems to me you are the one trading in stigmas now. Exactly the opposite of what we’re supposed to be about here. I feel betrayed.

Woman with the electric teeth said:

I am absolutely astounded, Howard, that you have never had an MRI. Why ever not?! Surely with persistent face/head pain it's the obvious thing to do??? Sorry, I am just flabbergasted at that.

It's also quite alarming how much your life is mirroring your grandmother's and to a lesser extent your mother's. I'm absolutely sure if you have had psychological help in the past this has been brought up - that you are a malingering child of two previous generations of malingerers? In other words, that your present condition/s are learned behaviour?

Does it not worry you that perhaps you go into medical consultations with too much of this at the forefront of your mind? That you are casting yourself in that role before anything medical has even been suggested? This has to have played a part in why you have never had an MRI suggested to you. Why have you never insisted on one yourself? Surely, with head pain, looking inside your head has to be first port of call?

I'm sorry, but that oversight really is odd to me.....
thehoward said:

This is really quite astounding.

1. I was diagnosed with fibromyalgia first, well before 1995, and learned to roll with it more or less. Xanax and Elavil teamed to make my body pain less awful than my face pain.

2. I took to calling my face pain “fibromyalgia of the face.”

3. I do not think that my face pain is like my body pain. Because I never had piercing pain, I have not to this day taken an MRI, or been asked to take one. So no compressions that I am aware of.

4. I have always thought it was linked to a virus. My doctor did diagnose me with “active Epstein-Barr, though never called it the cause of my pain. Up until recently I have suffered through days- and weeks-long periods of feeling chilled, as if I had a temperature, and general malaise. I don’t know why this burden was lifted, but I just hope I haven’t jinxed myself.

5. My father died when I was 3 (on my birthday!), and my mother couldn’t keep it together: threatened suicide my whole childhood. Is that enough to cause stress? You bet. Is that enough to cause a pain condition later in life? Who the hell knows?

6, Back story: my grandmother, who lived with us until she died when I was 12, was always complaining and my mother took her to clinics regularly where they would never find anything. My grandmother spoke little English, so I never even knew what it was she was complaining about. She sat in the living room chair all day talking to herself in Yiddish. I am embarrassed to admit I was not kind to her. I can’t recall if the poor woman ever smiled.

7. “Keep moving no matter what” is what I tell other people to do – and what I do when I am not being self-defeating. It amazes me that I know how much exercising, going to the supermarket, doing household chores, forestalls the onset of the day’s worst pain, and yet I still spend some days curled up. We/I still need the encouragement. Especially late at night, as I write this, as I can feel the pain building, and fight to remain mentally focused on what I want to type (my typing is a mess, so I edit a lot). There is a show I taped and a book I’m in the middle of, if, as is likely nowadays, I can’t get to sleep.

It should be remembered, however, there are people who have not yet found drug(s) that do anything to relieve the pain, so for them it is perhaps too easy to say, get up. Just get up. Those people have to keep trying to find better meds (and better doctors), whatever those meds might connote.

But you need not apologize for rambling. You need to give this advice over and over again.



Bellalarke said:

Just jumping in here with random thoughts and they may come out convoluted but I'm going to take a stab...

I was diagnosed with fibromyalgia in 1995 and more or less learned to roll with it. But in November 2009 I woke up in the middle of the night with deep piercing ear pain and yadayadayada...all the tests, different diagnosis, MRIs, pain spread, etc. and life has been chaos ever since.

The first neurologist I went to said it was fibro "gone to my head"... Meaning spread to head and face. However, I never, ever thought that the new pain was anything like the fibro pain and so persisted in finding other answers and so did my family doctor.

So one of my questions is: does this actually FEEL like fibro pain to you. Or does it feel like something else.

In my case Compressions were found, MVD last September for both 5th and 7th. A little improvement. I was being considered for having the 9th and top fibres of 10th cut. Went to top dog functional neurosurgeon here in BC last week and he says he thinks it's possibly been a virus all along and that it's neuropathy, even though I had compressions. Or something genetic. Or still possibility of late MS...but he has committed to finding a REAL diagnosis.

He did spend about 2 minutes in our hour and a half asking the routine "did you suffer really terrible childhood abuse" but we got over that in a hurry and he seemed apologetic asking. It is known that devastating early experiences changes how the brain develops and pain response is one of the factors. Even so, having early childhood experiences does not preclude that something else happened along the way to present symptoms: like a virus, etc.

Upon reflection the biggest change for me after the MVD has been my DYNAMIC to this illness. A bit of back story: My grandmother took to her rocking chair In her late 40s and never got up, eventually losing both legs. She was accused of being a hypochondriac but I always though there was something really tragic about her, something medical that was unknown at the time. What I don't believe helped her was her coping strategy. She was curled down in pain. And here I was curled down in pain half a century later. This was really on my mind. When I was first diagnosed with fibro the best thing one doctor said to me was "keep moving no matter what". This was sound advice and I was thinking a lot about that during recovery from MVD.

I decided to get back up and straighten up no matter what. I keep a watch on my posture. I'm not going back "down" again. In this regard it doesn't matter what my disease is called. While I'm waiting to find answers I need to fight for my life. Looking at myself in the mirror seeing pain or catching myself all slumped over intensifies the pain feedback loop.

I need little accomplishments every day. And I need not to think about this all the time. It's one thing to keep up with the latest research but it's another thing to let it become my life. I have let that happen on occasion and it only intensifies the pain.

I believe the idea of the mind/body split is old and unhelpful. We live as one entity. And we need to stop talking as if there is a split. We need to not let others talk about us as if there is a split. So the very idea of AFP needs to be rejected because it is complacent and a dead end. We are not fragmented beings...mental entities being one thing, physical entities being another as if a plus or minus could be tallied up and out plops a diagnosis. We are human beings...whole beings. We need to follow all the leads. And we need to act as whole beings.

I'm glad that Dr. Casey has changed his mind in the last decade. This shows promise. The old Strike Back book is out of date in many ways.

So I have great doctors on my side who are current. But a big problem is the invisibility of the pain to others. I live alone but when I am with family and close friends I work really hard to mask the pain because I still need to be a person people like to be with. They know about the pain but it does no good to constantly remind myself or them.

So this is part of the challenge and here it becomes a kind of spiritual journey. How do I live live the best life I can given the reality of this pain? No matter what it is called.

Because pain builds more pain, and then there needs to be recovery, I opt for not letting it get too much out of hand when I can even if that means taking more meds...because then I can focus on something else, and do a little something, and that is a pain reliever in itself.

I hope there is a shred of clarity in my ramble and that I am not totally off base here.

Keep Heart
Bellalarke
33

You are on a roll, Howard. I was, once again, offering support to Saraiderin's ideology, so that she wouldn't think I was criticising her when I said that, unlike her, I couldn't not know what was causing my condition. I was trying to empathise, by showing that I understood why she no longer cared about knowing. I was trying to show that it helped to be upbeat where possible. Believe it or not, Howard, not everything is about you, nor is it aimed at you.

And, for the record, my drugs are nowhere near taking care of my pain. I'm awake, I'm in pain. What's more, I spend most of my time worried to death that I'm going to be in more pain, and, as my condition is so newly diagnosed, I worry about what's waiting down the road for me. Currently, I am consumed by anxiety over an upcoming MRI because so much is resting on it: will I have to have brain surgery, is it a tumour, do I have MS as well as TN, will they find nothing and condemn me to a life filled with medication? On top of that, I have to deal with all this while feeling nauseous, unsteady on my feet, stupid, with hallucinations, and now, a nice new one, sensitivity to light with headaches. And I have to go through this every week as they up my meds. And that's just the tip of the iceberg. Would you like more? Would that earn me more respect and civility from you?

I cried again this morning, for much longer - would you like specifics? How is my suffering in any way relevant to anything? Or does it make you feel better to believe someone as nasty as me must be breezing through this while only 'real' sufferers like you are in pain?

If you want to lecture someone on hostility and the use of "invective", look in the mirror. I called no-one a "crybaby". I called no-one anything, including you. I explained the medical use of the word malingerer, I explained my usage, the assumption I jumped to and how I was referring to psychiatrists' attitudes to your family, not my attitude to you. It was not meant as an insult.

Perhaps if you want to worry about someone creating a "damaging environment" you should reconsider rushing in to take offense before giving people a chance to explain any misunderstanding, deciding that you are being called names when you're not, deciding that discussions between others are really all about you, and reading things into people's posts then going into "invective" overdrive. That's what I'd call a damaging environment for any forum where the free exchange of ideas is supposed to be taking place.

I'll leave you to it and remove myself from the discussion.

thehoward said:

This is not right. What is to some people aptly called the "suicide disease" (even if it is not a statistically justified truth) has now become a trifle in the grand scheme of things, because other people in earlier times and even in our times experienced far more horror in life. You can't come on here and straight out call victims of this dreaded condition crybabies. I don't like comparing different people's level of horror, especially when many are still searching for treatment modalities that provide the minimum basis for "putting things in perspective." I assume you have found this foundation for yourself. Not all are so lucky. Some find it, then lose it all at once or over time. Once again, when the appropriate tone is caring, the one you offer is chastisement. I very much regret that this thread has become personal, but you don't go around calling people malingerers and crybabies and expect people not to take it personally. How many will now lack the courage to post here, knowing you are hiding in the weeds, waiting for you to label them as self-pitying, other-blaming wretches. You're damaging the environment. This is a refuge for people who are still trying to figure out how they will make it until tomorrow. You've got it under control? Fine. Congratulations. But not everyone does. This is the place to release self-pity, because others cannot bear to hear it, and one needs people who can empathize. Eventually, one is able, to go out and try to live the semblance of a normal life for yourself and the one's you love. Electric woman, you can share your wisdom here but your mode of giving advice is not a tonic for the weak. It is an affront. You say you cried yesterday. Over what? Is there a time limit on crying? Disdain "the weak" if you like, but don't do it publicly.


Woman with the electric teeth said:

Couldn't agree more, Saraiderin. I think those lost in bemoaning their fate, complaining about everything from the health service to the drugs themselves are exactly that, lost. I think it's a kind of denial: while they are complaining about everything they don't need to face what has happened to them - it is all someone else's fault.

While I get that it is tough (I cried myself yesterday) and optimism can be very hard work, there is a lot to be thankful for. Had we all been born in the 1700s or even the 1800s, we would have no respite from our pain at all - no drugs, no surgery and no comprehension from our doctors - if we'd been lucky enough to be born into a class that could afford doctors. We're doing pretty well, all things considered!

saraiderin said:

After 19 years of dealing with this, I no longer care what is causing the pain. My concern is learning to live my life in spite of it. It has taken me years to come to the realization I have Tn, but it does not have me. Personally, I do not want the pain to control my life, and that is what I am focusing on. Thing is I do understand the fear about the MRI. I had it myself. Thing is in 13 years of medicine my neurosurgeon told me he has never seen a skull as thick as mine, in any of his patients. He was talking about all his patients, not just his TN ones. Goes to show I am literally thick headed. ;) I am learning a lot about the importance of keeping one's sense of humor, but that is a different story for another day.

As for Dr Casey, and the 7 point TN classification system, I know he, and the doctor that wrote it do not get along at all, and as such I am not surprised he took the stand he did on it.

Woman with the electric teeth said:

Hi Saraiderin, I couldn't be like that at all! I am desperate to know what is causing my TN. I have an MRI coming up shortly and live in terror & hope. Terror that it may come up blank, because what do I do then? And hope that it may offer something concrete so we can do something concrete. There is nothing worse than blundering around in the dark, but I get absolutely that if you have been in a lot of pain, for perhaps years, you are too damn worn out to care any more, you just want it to stop.

But the Substance P thing looks very interesting. I'm going to read up on that one. Thanks for the tip!

saraiderin said:

I am at a point in my life, I do not care what caused it, though during my first MVD, it was found I had bone pressing on the nerve. As for my ATN who knows? Personally, I do not see TN as a soft tissue disorder, but from what I am learning, it is faulty regulation of nerve excitability, which talks to brain function. I encourage you to research "Substance P." which causes inflammation, and is a major cause of Fibromyalgia.

34

Okay, folks... I've hung back and refrained from commenting or interfering. But this is where the buck stops. Site moderators will not tolerate invective or personal attacks from any member against other members or medical professionals. The discussion has approached that level of confrontation.

So I must now ask that everybody take a time out, step back and take a deep breath, and recognize that just as there is no single presentation or cause of chronic face pain, there is no single patient personality or coping program. Some folks need to vent or cry. Others choose to address their pain by soldiering on through it. Both are welcome here. We try to create an environment that is safe for all who come here. ALL. If some of us can't be civil with others, the moderators are quite prepared to suspend or ban offenders.

So apologize to each other and dial it back, please.

Go in Peace and Power

Red Lawhern, Ph.D.

Resident Research Analyst, LWTN

35

Red, thanks for intervening. I was going to alert you if I did not get a satisfactory response. I've taken a walk around the block and I am left with these thoughts.

To WWTEE, I accept your explanation and would be happy to go back to square one. My shock was due in large part to getting an e-mail like this from someone who had been supportive in previous posts. I was about to "friend" you. The fact is, I have a large vocabulary, but I am entirely unfamiliar with this medical definition of "malinger." (My American Heritage Dictionary doesn't have it.) So you can understand my hurt (even now, I have friends who hint that my accepting disability is the act of a malingerer) and anger (they have no idea what we have to overcome to act happy, much less be happy). If this is a medical term and I misunderstood it as you say, then that puts what you've said in a different light. I asked a lot of questions in my response that I would still like answered - by someone. So I am not going to slink away.

As for the "crybaby" charge, I was not quoting you. I was summing up the way it read. Actually, I read that post before the one you sent about me! I will take your correction at face value. I do think, however, that it is important to reread one's post before sending -- a general rule on the Internet, where meaning isn't as obvious as it is face to face or even voice to voice. I am sorry for your tears and fears. I encourage you to share these feelings -- so I can tell you to buck up :) I hope you take this reply as a genuine peace offering.

You have my best wishes for a successful MRI and aftermath. Truly.

Howard

36

What an absolute shame that this discussion has taken the turn it has. I absolutely second Red. We are very liberal here, until we see unkindness. That is always totally forbidden. If you need to ask why, the my take is that we all suffer some degree of isolation with this punishing condition. We need care and support here. There is a lot of truth I my grandma’s often quoted saying, ‘If You can’t say something nice,then say nothing’. We are never going to agree on some issues, but we must support and care here, that is what we are about. I am impressed with the apologies offered. Let them continue. I wish you all well and hope for better for everyone. Goodnight.

37

Agreed Jackie…time out peeps…

38

I am not one to post or share my thoughts that often. But the initial discussion and TheHoward" on “Howard” reply pushed my button. I think it was gracefully and compassionately put to rest by Dr. Red who I personally respect and thank God for. I am not writing to raise the matter again but to thank “Red”, fellow sufferers and the association for their responses and being part of my “survival” family. I am just on a 2 day relief cycle from 8 weeks of not eating, surviving on protein shakes, 24/7 pain at 10+ and hardly being able to talk or think clearly. (Sounds familiar, right). My ATN, now almost 7 years after diagnosis, has now decided to mimic TN and stay with me constantly. I endure because of my family and friends support and my newly found extended family all of my fellow members. My ENT doctor, my acupuncturist and my basic stubbornness and refusal to let my disease win has finally given me 2 days off, (my meds stopped working months ago although at the max level). I was thankful for one night’s sleep and an hour of pain less than 10. I am thankful for the solid food I will eat tonight no matter how much it hurts, burns and so on and even if tomorrow I go back to my new normal. The reason is simple for me an almost 65 year old man or person. It goes back to what my Grandparents said to me over and over again more than 60 years ago. “I cried cause I had no shoes until I met a man who had no feet.” All of my initial heroes in life have passed on (grandparents, parents, Mickey Mantle and etc.) but I am blessed to still be breathing and able to see my wife, my sons and my friends even on my bad days. They support me as I have done for them over our many years together. I spend my good days giving two of my best friends love and support as they face their final days with stage 4 terminal colon cancer and kidney disease, stroke and heart failure that is irreversible. One leaves in an almost vegetative state just coming out of a coma and basically living to get dialysis (he cannot talk or walk). His wife is one of my heroes, she survived a double mastectomy and had had to put her reconstruction surgery on hold to be his caregiver. My other heroes are our men and women who serve or served our country. I am a second generation member of that group. I’m rambling and apologize. Taking advantage of my day of “sanity” (Lol, did I say maintaining your humor helps). My heroes are the children born with debilitating diseases who have to struggle everyday of their lives since childhood, but manage to smile, work, go to school and give love. I pray that those survivors encourage you not to give up. My best remedy, (besides listening to classic rock with the headphones on at a deafening levels), is to do something for someone else. Listen to a youth in trouble, go to a hospital for our VETs and say hello and thank them, basically find a way to reach out beyond our own misery. I believe and my family and myself fought for freedom of speech. So Howard I support your right of freedom of speech and thought. I hope you feel better today. But I believe your comments went beyond that and were destructive and contrary to the Association’s goals and purpose. The casting of dispersions on professionals who our helping our quest for relief and attacking our fellow victims stretches beyond that freedom. Venting and sharing your pain and frustration is expected and therapeutic, the other is selfish, mean spirited and “misery likes company” behavior. Think before you post or write. This site is to help us cope not for dumping your misery on others, we already have our own to endure. It is my opinion that you should exercise your “freedom and freedom of speech,” by simply changing the channel. Dr. Casey’s video and “Red”'s discussions helped me and many others. If they didn’t help you personally that’s just like the meds that help some and not others. If they only helped one of our fellow victims they are useful. I understand your frustration and negativism. I work out; (yes it hurts but it is a necessity, if I didn’t I would lose the use of my right arm and shoulder due to recent injury and surgery) teach martial arts (for free) to youth with disabilities, meditate and go out to celebrate life when I can. I do this not only to vent my anger and to give myself strength but to find a way to thank my friends and family who have supported me during times “when just being alive hurts.” Giving to others is a great healing source, you forget about yourself for a while and actually “live again.” When it’s my time to move on to the next world I want my legacy to be that “he cared, he helped others, he showed us what strength and dignity was about and he loved no matter what pain he was in.” I am spiritual and not a believer in organized religion but I pray for others never myself. I pray for you to find something positive to contribute to “us” and others, our true remedy is in the hands of God, but our works will allow us to receive that remedy whenever it comes. HMB (Over and Out)

39

Thank you for this post. Giving to others being a source of healing - beautiful.

HMB said:

I am not one to post or share my thoughts that often. But the initial discussion and TheHoward" on "Howard" reply pushed my button. I think it was gracefully and compassionately put to rest by Dr. Red who I personally respect and thank God for. I am not writing to raise the matter again but to thank "Red", fellow sufferers and the association for their responses and being part of my "survival" family. I am just on a 2 day relief cycle from 8 weeks of not eating, surviving on protein shakes, 24/7 pain at 10+ and hardly being able to talk or think clearly. (Sounds familiar, right). My ATN, now almost 7 years after diagnosis, has now decided to mimic TN and stay with me constantly. I endure because of my family and friends support and my newly found extended family all of my fellow members. My ENT doctor, my acupuncturist and my basic stubbornness and refusal to let my disease win has finally given me 2 days off, (my meds stopped working months ago although at the max level). I was thankful for one night's sleep and an hour of pain less than 10. I am thankful for the solid food I will eat tonight no matter how much it hurts, burns and so on and even if tomorrow I go back to my new normal. The reason is simple for me an almost 65 year old man or person. It goes back to what my Grandparents said to me over and over again more than 60 years ago. "I cried cause I had no shoes until I met a man who had no feet." All of my initial heroes in life have passed on (grandparents, parents, Mickey Mantle and etc.) but I am blessed to still be breathing and able to see my wife, my sons and my friends even on my bad days. They support me as I have done for them over our many years together. I spend my good days giving two of my best friends love and support as they face their final days with stage 4 terminal colon cancer and kidney disease, stroke and heart failure that is irreversible. One leaves in an almost vegetative state just coming out of a coma and basically living to get dialysis (he cannot talk or walk). His wife is one of my heroes, she survived a double mastectomy and had had to put her reconstruction surgery on hold to be his caregiver. My other heroes are our men and women who serve or served our country. I am a second generation member of that group. I'm rambling and apologize. Taking advantage of my day of "sanity" (Lol, did I say maintaining your humor helps). My heroes are the children born with debilitating diseases who have to struggle everyday of their lives since childhood, but manage to smile, work, go to school and give love. I pray that those survivors encourage you not to give up. My best remedy, (besides listening to classic rock with the headphones on at a deafening levels), is to do something for someone else. Listen to a youth in trouble, go to a hospital for our VETs and say hello and thank them, basically find a way to reach out beyond our own misery. I believe and my family and myself fought for freedom of speech. So Howard I support your right of freedom of speech and thought. I hope you feel better today. But I believe your comments went beyond that and were destructive and contrary to the Association's goals and purpose. The casting of dispersions on professionals who our helping our quest for relief and attacking our fellow victims stretches beyond that freedom. Venting and sharing your pain and frustration is expected and therapeutic, the other is selfish, mean spirited and "misery likes company" behavior. Think before you post or write. This site is to help us cope not for dumping your misery on others, we already have our own to endure. It is my opinion that you should exercise your "freedom and freedom of speech," by simply changing the channel. Dr. Casey's video and "Red"'s discussions helped me and many others. If they didn't help you personally that's just like the meds that help some and not others. If they only helped one of our fellow victims they are useful. I understand your frustration and negativism. I work out; (yes it hurts but it is a necessity, if I didn't I would lose the use of my right arm and shoulder due to recent injury and surgery) teach martial arts (for free) to youth with disabilities, meditate and go out to celebrate life when I can. I do this not only to vent my anger and to give myself strength but to find a way to thank my friends and family who have supported me during times "when just being alive hurts." Giving to others is a great healing source, you forget about yourself for a while and actually "live again." When it's my time to move on to the next world I want my legacy to be that "he cared, he helped others, he showed us what strength and dignity was about and he loved no matter what pain he was in." I am spiritual and not a believer in organized religion but I pray for others never myself. I pray for you to find something positive to contribute to "us" and others, our true remedy is in the hands of God, but our works will allow us to receive that remedy whenever it comes. HMB (Over and Out)
40

I am sorry to hear your meds have stopped working HMB…I wish for better days ahead for you… I too, thank you for your post. Min