Today the pains are bad - really bad. The frequency and severity of the attacks has increased over the last few days. I can hardly move without triggering an attack. I have found that pushing my finger on my neck at the base of my skull whilst simultaneously pushing my head back and to the left provides some relief. I have done this so much now that my neck is bruised and painful.
I have to go to see the neurologist today.
It is clear that I cannot drive like this, so I send an email to a colleague to drive me there. When he arrives, I slowly and carefully walk down the steps with my head pushed back. Every step causes a spasm. Clearly, vibrations are now triggers. I get into the car and indicate with my hand that I cannot speak. He drives slowly, avoiding the many potholes and bumps, and finally we arrive at the clinic. We make our way slowly to the office.
I whisper my name to the secretary of the neurologist. She gives me a form to fill-in. Even writing with the pen triggers more attacks. I have the feeling that the other people in the waiting room are staring at me as I sit unshaven, unwashed, with my head in a strange position and a miserable expression on my face - but I don't care. We are so strongly conditioned to "appear" in a certain way in public - but this terrible pain strips away all that social conditioning.
Finally I am called in to see the neurologist. He can see that I am in pain when I try to talk and so he couches his questions such that I can answer in single words. He confirms that I am indeed suffering from TN and says that I should have an MRI scan as soon as possible. He prescribes an immediate increase in my dose of tegretol - from 400mgs to 800mgs per day.
The secretary makes the appointment for the MRI for next Monday, March 3rd. Given that the previous person was told that they would have to wait until the following Friday, there was clearly some urgency indicated in my case.
The following video captures how we sufferers feel about trigeminal neuralgia and gives good images of the most used surgical procedure (bit gory - so be warned):
Thursday, February 28, 2008
Sunday, February 24, 2008
The rise and fall of pain relief
I had a whole week of very little pain whilst spending a week with my girlfriend in the USA. Heaven.
Then today, returning home, I came down the steps of the aircraft and onto the tarmac. I took two steps and pow!!! A series of searing pains hit me and wouldn't stop. I just stood there on the tarmac holding my head, pressing the back of kneck, trying all the strategies I had tried before to alleviate the pain. None seemed to work. Tears filled my eyes, my face burned. Airport workers came up to me to try to help. I couldn't speak to them. If only they could see what was happening inside my head. They brought a wheelchair. I slowly shook my head to refuse it. Somehow I felt that sitting down would not help. I felt that sitting in a plane for several hours was a partial cause, as I could feel occasional twinges during the flight. "Must walk" - I thought.
Finally, the spasms stopped. The airport staff insisted that one of them accompany me to immigration - policy I suppose. Slowly we walked in silence to immigration.
After a silent taxi ride, I arrived at my flat - well, not quite. I still had three flights of stairs to negotiate. By this time I had worked out that the attack might have been triggered (somehow) by me carrying my laptop case in my right hand. I now had two cases to carry up these three flights - so I took them one at a time, in my left hand, slowly up to my flat.
Then today, returning home, I came down the steps of the aircraft and onto the tarmac. I took two steps and pow!!! A series of searing pains hit me and wouldn't stop. I just stood there on the tarmac holding my head, pressing the back of kneck, trying all the strategies I had tried before to alleviate the pain. None seemed to work. Tears filled my eyes, my face burned. Airport workers came up to me to try to help. I couldn't speak to them. If only they could see what was happening inside my head. They brought a wheelchair. I slowly shook my head to refuse it. Somehow I felt that sitting down would not help. I felt that sitting in a plane for several hours was a partial cause, as I could feel occasional twinges during the flight. "Must walk" - I thought.
Finally, the spasms stopped. The airport staff insisted that one of them accompany me to immigration - policy I suppose. Slowly we walked in silence to immigration.
After a silent taxi ride, I arrived at my flat - well, not quite. I still had three flights of stairs to negotiate. By this time I had worked out that the attack might have been triggered (somehow) by me carrying my laptop case in my right hand. I now had two cases to carry up these three flights - so I took them one at a time, in my left hand, slowly up to my flat.
Friday, February 22, 2008
The acupuncturist and the dentist
On February 4th I had taken three tegretol tablets starting in the afternoon as soon as the doctor had given the go ahead to come off the Lyrica. So by the next day, I think that increased dose was already improving things in that the attacks, though still occurring, were not sustained/repeated spasms and not as violent. I actually ate (more like gulped without letting it touch the front of my mouth or tongue) a bowl of porridge in the morning without too much pain. And I was managing to drink easier - all I had been able to drink all the day before was two cups of warm milk - couldn't manage anymore, so was quite dehydrated as well.
So I am already feeling a little better on February 5th as I sit in the waiting room of the acupuncturist with about four other people. It is clear from all the wall charts that this person is not just an acupuncturist - he also practices chiropractic, kinesiology, natural medicine and clinical nutrition forms of health care. Altogether - a holistic natural health care.
I guess because this was the first meeting with the acupuncturist, there were no needles - just tests. He said he couldn't cure the TN 'coz I'd had it so long, but he thought he could alleviate it. He thought one problem might be an uneven bite so he asked me to go for a "bite test" with a dentist first. So no relief - in fact aggravation 'coz during the consultation I realised that I still couldn't talk without causing the pain - and he asked me to bite on a stick - and wow!! did that hurt.
Took me awhile to calm down when I got back home. Was still shaky - part of the problem was I had very little and only intermittent sleep the night before - which I later realised was probably the withdrawal symptoms of coming off the Lyrica.
The next day I went to see the dentist. An interesting "holistic" sort of dentist - the first question he asked me was - what was I feeling guilty about or not communicating. He said it was time to let it go and that we punished ourselves far too much. Interesting thought that connected with my friend's comment about "unresolved issues". But I thought that all my issues had been resolved. I now had a new love in my life - someone with whom I shared so many interests and who was a really good friend as well as a lover.
The dentist pressed his finger against my jaw joint and asked me to open my jaw. Bolts of lightening shot through my head. I sat up in the dentists' chair and held my head, panting short breaths through my mouth, tears in my eyes. After a minute they subsided and slowly I relaxed again. He then attended to making the mold for the orthodontic splint.
For the next week or so, the acupuncturist or "natural health care specialist" increased the number of visits. Finally, February 15 was the day for real serious treatment - but not pins. Instead his female assistant used a laser on the same points - temple, eyes, left ankle, wrists, ear lobe and tip. Not sure why I get laser rather than pins - but if it works, who cares?
So I am already feeling a little better on February 5th as I sit in the waiting room of the acupuncturist with about four other people. It is clear from all the wall charts that this person is not just an acupuncturist - he also practices chiropractic, kinesiology, natural medicine and clinical nutrition forms of health care. Altogether - a holistic natural health care.
I guess because this was the first meeting with the acupuncturist, there were no needles - just tests. He said he couldn't cure the TN 'coz I'd had it so long, but he thought he could alleviate it. He thought one problem might be an uneven bite so he asked me to go for a "bite test" with a dentist first. So no relief - in fact aggravation 'coz during the consultation I realised that I still couldn't talk without causing the pain - and he asked me to bite on a stick - and wow!! did that hurt.
Took me awhile to calm down when I got back home. Was still shaky - part of the problem was I had very little and only intermittent sleep the night before - which I later realised was probably the withdrawal symptoms of coming off the Lyrica.
The next day I went to see the dentist. An interesting "holistic" sort of dentist - the first question he asked me was - what was I feeling guilty about or not communicating. He said it was time to let it go and that we punished ourselves far too much. Interesting thought that connected with my friend's comment about "unresolved issues". But I thought that all my issues had been resolved. I now had a new love in my life - someone with whom I shared so many interests and who was a really good friend as well as a lover.
The dentist pressed his finger against my jaw joint and asked me to open my jaw. Bolts of lightening shot through my head. I sat up in the dentists' chair and held my head, panting short breaths through my mouth, tears in my eyes. After a minute they subsided and slowly I relaxed again. He then attended to making the mold for the orthodontic splint.
For the next week or so, the acupuncturist or "natural health care specialist" increased the number of visits. Finally, February 15 was the day for real serious treatment - but not pins. Instead his female assistant used a laser on the same points - temple, eyes, left ankle, wrists, ear lobe and tip. Not sure why I get laser rather than pins - but if it works, who cares?
Wednesday, February 20, 2008
Change of medication
At the end of January 2008, I wondered if I had now developed the "atypical" type as well as the "typical" type of TN. Not only did I get a violent spasm when the trigger was touched (or in some other way activated, e.g., talking and eating) - which is the typical TN - but I also had a continuous dull ache and minor spasms which were not triggered by anything. These latter seemed to be worst when I tried to sleep - hence little sleep at night. And then next day when I yawned, I triggered a typical (violent) spasm - can't win :-)
February 2, 2008 - the attacks were getting more frequent, longer and more severe. I didn't think that the severity of the bolts of lightening could get any worse - but they did. So I went to the doctor again. He took me off tegretol and put me on Lyrica.
Two days later, the attacks were even worse. I called the doctor and he said I should go back on the tegretol. So I decided to leave work to get my tablets. But on the way out of my office I had a bad attack when greeting a colleague in the front office. It lasted for at least a minute after which time I was red, shaking and had tears in my eyes. I had to just sit in the front office for about five minutes. Then I moved to my boss's office to let her know I was going home and had another shorter attack when I tried to speak. So I sat in her office recovering for about five minutes whilst she found the name and address of an acupuncturist. Took me about another hour in my office to recover enough to walk cautiously to my car and drive home.
The next day I went to the acupuncturist.
February 2, 2008 - the attacks were getting more frequent, longer and more severe. I didn't think that the severity of the bolts of lightening could get any worse - but they did. So I went to the doctor again. He took me off tegretol and put me on Lyrica.
Two days later, the attacks were even worse. I called the doctor and he said I should go back on the tegretol. So I decided to leave work to get my tablets. But on the way out of my office I had a bad attack when greeting a colleague in the front office. It lasted for at least a minute after which time I was red, shaking and had tears in my eyes. I had to just sit in the front office for about five minutes. Then I moved to my boss's office to let her know I was going home and had another shorter attack when I tried to speak. So I sat in her office recovering for about five minutes whilst she found the name and address of an acupuncturist. Took me about another hour in my office to recover enough to walk cautiously to my car and drive home.
The next day I went to the acupuncturist.
Friday, February 15, 2008
Multiple electric shocks
It was mid-November 2007 when I got really scared. I had just checked into a hotel in order to attend some meetings. I carried my suitcase and laptop case up the stairs to my room, bent down to place them on the floor and as I stood up a series of electric shocks hit me. I wasn't touching any part of my face so they seemed to be spontaneous, and what is worse - they wouldn't stop. I cried out in pain and dropped on the bed clutching and pressing my head. After what seemed an eternity, but in reality was probably only a minute, they stopped.
I remained perfectly still on the bed, not daring to breathe or move. I tried to think calm thoughts to slow my racing pulse. Slowly I calmed down and started to breathe again. Then, without me moving at all - another series of electric shocks hit me. I gripped my head tight and tried to calm down. Tears came in my eyes, my nose filled with mucus, but after a minute the pains stopped again. I laid for awhile panting short breaths through my mouth like a dog.
I no longer just felt scared - I felt terror. What if the next series of excruciating pains didn't stop? I was beginning to understand why they call this the "suicide disease". I very carefully got up from the bed and cautiously began walking on the spot and around the room for about 20 minutes (this was something that I had discovered sometimes helped). All the time I was breathing through my mouth and taking care not to bend or look down or up.
I knew that I couldn't go to the meeting later that afternoon. And I had just taken the last half tablet of tegretol. I knew I had to communicate with someone to get help. But I couldn't talk on the telephone and I didn't dare go outside the room. Cautiously I set up my laptop and emailed a friend and colleague, but discovered he wasn't in town. So I emailed the people I was supposed to meet, explaining the situation. They offered to help. Without any real expectation that they would be able to manage it, I asked them to try to get tegretol for me - and within half an hour, they emailed that they had got it and would deliver it to the hotel shortly. Suddenly things were looking brighter.
Then, just as suddenly, I had another electric shock - though not multiple. But this time I realised that it was because I had breathed through my nose. So that was the trigger - breathing through my nose. And the multiple electric shocks were because at the first one I would inhale sharply through my nose, thereby causing a sequence of spasms. Anyway, I got up and started walking around the room - breathing through my mouth - and that eased it. Got to keep walking .......
Now that I knew what the trigger was for this TN episode, I felt a lot happier. Bending down and lifting things with my right hand also seemed to bring it on - but that might have been because when doing those things I breathed through my nose more energetically.
And so this is the reason that I sometimes walk around with tissue stuffed up my right nostril.
I remained perfectly still on the bed, not daring to breathe or move. I tried to think calm thoughts to slow my racing pulse. Slowly I calmed down and started to breathe again. Then, without me moving at all - another series of electric shocks hit me. I gripped my head tight and tried to calm down. Tears came in my eyes, my nose filled with mucus, but after a minute the pains stopped again. I laid for awhile panting short breaths through my mouth like a dog.
I no longer just felt scared - I felt terror. What if the next series of excruciating pains didn't stop? I was beginning to understand why they call this the "suicide disease". I very carefully got up from the bed and cautiously began walking on the spot and around the room for about 20 minutes (this was something that I had discovered sometimes helped). All the time I was breathing through my mouth and taking care not to bend or look down or up.
I knew that I couldn't go to the meeting later that afternoon. And I had just taken the last half tablet of tegretol. I knew I had to communicate with someone to get help. But I couldn't talk on the telephone and I didn't dare go outside the room. Cautiously I set up my laptop and emailed a friend and colleague, but discovered he wasn't in town. So I emailed the people I was supposed to meet, explaining the situation. They offered to help. Without any real expectation that they would be able to manage it, I asked them to try to get tegretol for me - and within half an hour, they emailed that they had got it and would deliver it to the hotel shortly. Suddenly things were looking brighter.
Then, just as suddenly, I had another electric shock - though not multiple. But this time I realised that it was because I had breathed through my nose. So that was the trigger - breathing through my nose. And the multiple electric shocks were because at the first one I would inhale sharply through my nose, thereby causing a sequence of spasms. Anyway, I got up and started walking around the room - breathing through my mouth - and that eased it. Got to keep walking .......
Now that I knew what the trigger was for this TN episode, I felt a lot happier. Bending down and lifting things with my right hand also seemed to bring it on - but that might have been because when doing those things I breathed through my nose more energetically.
And so this is the reason that I sometimes walk around with tissue stuffed up my right nostril.
Thursday, February 14, 2008
Living with TN
Were all the issues resolved? Not sure. Not that I had any really serious episodes between December 2006 and February 2007 - but I did have this weird pain in my tongue which seemed to me to be a remnant and a constant reminder that they might come back. And sure enough, they did. This time it was cleaning my teeth that triggered it. So I finally gave in and accepted that I must start taking the tegretol.
And so it started - a small daily dose of tegretol to try to keep these terrible pains at bay. I felt really tired for the first few days, but that soon passed. Then in mid-March I felt constant pain in my teeth. So I went to the dentist and she identified a suspect tooth (or two) that might have a dead or dying nerve. She gave me a course of antibiotics which she said would determine if this was the case and hence if this was causing the pain I was feeling. As it turned out, one tooth did have a dying nerve and rather than risk any further pain (and likely triggers for the TN) I asked her to extract it. It seems that many TN sufferers have teeth removed in the early stages. Amazing how we all go through the same thought processes. Under different circumstances we might have tried to save the teeth, but with the fear of triggering further electric shocks, and also the hope that this might be the "cure", we get them extracted. In any event, the pain in my teeth continued even after the extraction. Of course, it wasn't toothache at all - it was TN masquerading again.
In those early days, the pains (both the lesser background pains and the violent electric shocks) went away completely for short periods and I would actually stop taking the tegretol for a week or two. But then they would return - and even when they didn't, there was the terrible feeling of dread, of anxiety, that at any moment a violent attack was going to start. The slightest twinge in the face created terror - and this was how it went for most of 2007.
And so it started - a small daily dose of tegretol to try to keep these terrible pains at bay. I felt really tired for the first few days, but that soon passed. Then in mid-March I felt constant pain in my teeth. So I went to the dentist and she identified a suspect tooth (or two) that might have a dead or dying nerve. She gave me a course of antibiotics which she said would determine if this was the case and hence if this was causing the pain I was feeling. As it turned out, one tooth did have a dying nerve and rather than risk any further pain (and likely triggers for the TN) I asked her to extract it. It seems that many TN sufferers have teeth removed in the early stages. Amazing how we all go through the same thought processes. Under different circumstances we might have tried to save the teeth, but with the fear of triggering further electric shocks, and also the hope that this might be the "cure", we get them extracted. In any event, the pain in my teeth continued even after the extraction. Of course, it wasn't toothache at all - it was TN masquerading again.
In those early days, the pains (both the lesser background pains and the violent electric shocks) went away completely for short periods and I would actually stop taking the tegretol for a week or two. But then they would return - and even when they didn't, there was the terrible feeling of dread, of anxiety, that at any moment a violent attack was going to start. The slightest twinge in the face created terror - and this was how it went for most of 2007.
Wednesday, February 13, 2008
Unresolved issues
Today I made a booking to see a neurologist - finally. The appointment is for February 28. Should have done this a long time ago. But before we get to that, I was telling the story of how it all started.
So, back in October 2006 when I first learned that I had TN, after a week or so, the pains went away again. And so once more I didn't make a big fuss about it when I saw the doctor for my regular check-up. Big mistake. But you feel rather stupid saying "Well, I had this pain that was triggered by a drop of water hitting my nose, but it has gone now".
Somehow, you feel awkward telling anyone about this excruciating pain that has no apparent external cause, because you feel as if they're going to look at you as if you're crazy. You feel as if they're saying "Yes - it's all in your head - maybe you should see a psychiatrist instead of a doctor".
I have often wondered how close to the truth this is. At the end of 2006, a colleague and good friend came to visit. I was telling him about my facial pains one day and he commented "Unresolved issues mate" (he is Australian). His point was that many of our physical health problems have their origins in mental and emotional states. His theory for these pains of mine was that I had unresolved issues that must be worked through before I could hope to get any release from the pain. Of course, he knew that I was going through a marriage break-up at the time - so one can see how he would arrive at that conclusion.
Strange thing is - that is exactly how it seemed to play out. By December, my wife and I had agreed an amicable separation. And the pains stopped ... or so I thought.
So, back in October 2006 when I first learned that I had TN, after a week or so, the pains went away again. And so once more I didn't make a big fuss about it when I saw the doctor for my regular check-up. Big mistake. But you feel rather stupid saying "Well, I had this pain that was triggered by a drop of water hitting my nose, but it has gone now".
Somehow, you feel awkward telling anyone about this excruciating pain that has no apparent external cause, because you feel as if they're going to look at you as if you're crazy. You feel as if they're saying "Yes - it's all in your head - maybe you should see a psychiatrist instead of a doctor".
I have often wondered how close to the truth this is. At the end of 2006, a colleague and good friend came to visit. I was telling him about my facial pains one day and he commented "Unresolved issues mate" (he is Australian). His point was that many of our physical health problems have their origins in mental and emotional states. His theory for these pains of mine was that I had unresolved issues that must be worked through before I could hope to get any release from the pain. Of course, he knew that I was going through a marriage break-up at the time - so one can see how he would arrive at that conclusion.
Strange thing is - that is exactly how it seemed to play out. By December, my wife and I had agreed an amicable separation. And the pains stopped ... or so I thought.
Sunday, February 10, 2008
There was life before TN
So, as I prepare to impersonate a pin-cushion, I think "Why me? Why do I get these terrible electric shocks that are destroying my quality of life? And most importantly, will this visit to an acupuncturist get rid of the pain?"
It all started just over four years ago towards the end of 2003 - but I didn't know it was trigeminal neuralgia - never heard of it. Most people haven't. Not surprising really given that only 1-5 people in 100,000 suffer from it. Put another way, about 1 million people worldwide suffer from it - so at least I'm one-in-a-million :-)
I stepped into the shower and as the water hit me, a bolt of lightening shot from the tip of my nose to the top of my head - POW!!! What the hell was that? I touched my nose - POW!!! I had no idea what was happening, but I finished my shower without letting the water touch my nose. And for the rest of the day I tried to avoid touching my nose - but have you noticed how when you know you shouldn't do something, you have a fascination with doing it? I would keep touching it - just to check if it still hurt - it did. And then it would itch and I would touch it again.
Next day it had gone. And all was well until about 6 months later. But this time the sensitive spot was just above my top lip. So I walk around with stubble on my top lip that day. Next day - same problem. But next day - gone. And so it went .. months would pass between each bout, and each time the bout would get a little longer and with a different trigger point each time - but always on the right hand side of my face.
I now understand that this sort of occasional appearance of the pain in the early stages is fairly normal for TN sufferers. But at that time I had no idea what was happening. Each time I put it down to tiredness, or working too long on the computer, or the stress I was feeling in my work and personal life at the time - and because I never seemed to have the time, I never went to see the doctor about it.
At one point the pain seemed to come from my teeth. So this time I made time and I went to the dentist. She identified a couple of minor fillings and then said "Well - the good news is that your teeth are fine. The bad news is that they're not causing the face pain".
In October 2006, I suffered a really sustained bout that rendered me unable to eat or talk without pain. I was dining with a group of colleagues. Well - they were dining - I was merely trying to eat some food without too much pain. Suddenly I got a bolt of lightening, whinced and stopped eating. The colleague to my left (who just happened to be a psychiatrist) asked what was wrong. I tried to explain - and he immediately said "Sounds like you're suffering from trigeminal neuralgia". "So, can it be treated?" I asked. "Yes" he said "you can take tegretol".
It all started just over four years ago towards the end of 2003 - but I didn't know it was trigeminal neuralgia - never heard of it. Most people haven't. Not surprising really given that only 1-5 people in 100,000 suffer from it. Put another way, about 1 million people worldwide suffer from it - so at least I'm one-in-a-million :-)
I stepped into the shower and as the water hit me, a bolt of lightening shot from the tip of my nose to the top of my head - POW!!! What the hell was that? I touched my nose - POW!!! I had no idea what was happening, but I finished my shower without letting the water touch my nose. And for the rest of the day I tried to avoid touching my nose - but have you noticed how when you know you shouldn't do something, you have a fascination with doing it? I would keep touching it - just to check if it still hurt - it did. And then it would itch and I would touch it again.
Next day it had gone. And all was well until about 6 months later. But this time the sensitive spot was just above my top lip. So I walk around with stubble on my top lip that day. Next day - same problem. But next day - gone. And so it went .. months would pass between each bout, and each time the bout would get a little longer and with a different trigger point each time - but always on the right hand side of my face.
I now understand that this sort of occasional appearance of the pain in the early stages is fairly normal for TN sufferers. But at that time I had no idea what was happening. Each time I put it down to tiredness, or working too long on the computer, or the stress I was feeling in my work and personal life at the time - and because I never seemed to have the time, I never went to see the doctor about it.
At one point the pain seemed to come from my teeth. So this time I made time and I went to the dentist. She identified a couple of minor fillings and then said "Well - the good news is that your teeth are fine. The bad news is that they're not causing the face pain".
In October 2006, I suffered a really sustained bout that rendered me unable to eat or talk without pain. I was dining with a group of colleagues. Well - they were dining - I was merely trying to eat some food without too much pain. Suddenly I got a bolt of lightening, whinced and stopped eating. The colleague to my left (who just happened to be a psychiatrist) asked what was wrong. I tried to explain - and he immediately said "Sounds like you're suffering from trigeminal neuralgia". "So, can it be treated?" I asked. "Yes" he said "you can take tegretol".
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