I have just been diagnosed with TN but have been fighting it for over a year. Now that I know Type 1 or 2 How many doctors have you seen? Etc
My history is:
1st week in Nov 2015--hell week; 50 to 100 attacks/day. Had to see a neuroligist!
2nd week in Nov --Diagnosed with TN (My family convinced a neurologist to see me, usually these appointments take a month or so)
Started with 300 mg oxcarbazepine. Now at 450 to control Type 1 seizures. Still have some constant ear pain but quite tolerable. Side effects are dizziness, drowsiness, nightmares/dreams, some memory impairment (example..forgot what side on car was gas tank)
Had contrast MRI; nurse sent email saying nothing unusual--I guess that rules out tumors, cancers etc. Wont see neurologist until January to get his opinion.
Am looking for a doctor to get second opinion; this guy was not very informative, no "bed-side" manner
sorry--Some sentences were deleted from the post, starting with I have Type 1 and Type 2. Then...
I am asking for you history with drugs--which ones, how long did you take them, how effective were they, side effects? Same with surgical procedures? Alternatives--TENS, botox, etc? How many doctors have you seen? Are you suffering from depression? How do you cope? Are you on disability because of TN?
Outline or bullet form is OK; I ma trying to get mental picture of what the road ahead could look like
Tom, I am of several minds with regards to your last sentence: Just starting out on the pain journey, I sense that you may not understand yet that the road ahead can vary considerably between individuals. There's no one-size fits all road map.
Chronic face pain can evolve over time and very often does. Some people do well for years on a single anti-seizure drug, with minimal side effects (my spouse is one of them). Others find that a medication "fails" after a short time, and they have to switch or raise the dose levels (with a doctor's concurrence and prescription). Still others are resistant to ALL medications for face pain (called "refractory"), and must seek surgery to eliminate or manage their pain. Even with the best surgical procedures, many will relapse within a few years.
Alternative treatments include accupuncture, accupressure, physical therapy, cervical chiropractic, aroma therapy, Vitamin B-12 (shots), surgically implanted peripheral stimulators (beware of TENS devices - several patients here have reported massive breakthrough pain after using one). Some have tried herbalists, others ayurvedic medicine, a few low light laser illuminators -- and the reports we hear seem to indicate that a few people some of the time are helped. The majority are not, but when you're desperate for relief, some folks will try anything (sometimes to their regret and considerable expense).
Before you see your neurologist, I think it is in your best interests to purchase and read "Striking Back -- the Trigeminal Neuralgia Handbook" by Ken Casey MD and George Wiegel. Also useful is "Insights Facts and Stories behind Trigeminal Neuralgia" by Dr. Joanna Zakrzewska. Both are available via Amazon.com.
My first visit with the neurologist was not very informative. The exam was basically: you have TN, take this, see you in a month,I got to go sort of thing.
I understand that the cases vary quite a bit. I do have Striking Back and have gone through it. However I do not have a clear picture on how people cope long term. I see the success rate stats and it is clear that none are even 95%
Perhaps I should have asked specifically how people cope long term. I think I am getting a biased picture from this web site because most posts are by people with problems. The ones that are coping successfully probably don't go here as often.
Thanks again Red,
You are the best informed person that I have conversed with on this topic
Tom, I've no doubt that there is a self-selection bias in the active membership of sites like this one. When I was doing stats more routinely, I saw that as our nominal "membership" increased from ~2000 to (now) somewhat over 7000, the number of people who logged on within the previous six months tended to remain at about 1200.
Projecting experience of TN patients over long periods also suffers from a different sort of bias problem: Those who are relatively successful tend to drift away from sites like this one, and VERY few doctors do active follow-up surveys on their patients. Part of the reason for this latter effect is doubtless expense of analyzing surveys, and "splatter" in outcomes across a wide range of possible results.
Among the over 10,000 patients I've talked with during 19+ years, my impression has been that the number who are prescribed a single medication and remain pain-free or well managed for 10 years or more, is certainly less than half, and might be quite a bit less. Again, that self-selection bias is operating. But I've never seen a published paper in searches at the US National Library of Medicine that addressed the long term outcomes of medical treatment in this category of diseases. Aiculsamoth is a medical professional and ModSupport was a medical researcher for some years; they might be able to suggest something more definitive.
The results of treating 143 patients with trigeminal neuralgia with carbamazepine (CBZ) over a 16-year period have been reviewed. The drug was effective initially with few mild side effects in 99 patients (69%). Of these, 19 developed resistance later, i.e. between 2 months and 10 years after commencing treatment, and required alternative measures. Of the remaining 80 (56%), the drug was effective in 49 for 1-4 years and in 31 for 5-16 years. Thirty-six patients (25%) failed to respond to CBZ initially and required alternative measures, as did 8 (6%) who were intolerant of the drug. One patient developed CBZ-induced water intoxication with hyponatraemia. Subsequently hyponatraemia was excluded in 17 patients who had been taking CBZ for between 4 months and 7 years. This study has thus confirmed the efficacy of CBZ in the treatment of trigeminal neuralgia and shown that it may continue to be effective for many years.
Hi there
I wanted to share my experience with you, as I consider my story one of success. I have bilateral TN, with both the shocks of TN1 and the chronic burning boring pain of TN2. All three branches are affected on both sides. I had experienced intermittent burning boring pain on my right side for almost ten years ( I have another condition, for which I had brain surgery in 2003, and the pain was attributed to that) before it became constant and unbearable; the shocks started about a month later. I saw my original neurosurgeon, then a neurologist that he recommended, and neither of them could give me a diagnosis. I did a lot of Internet searching, and saw another neurologist about six months later who agreed with " my own diagnosis" pf TN. I started on Tegretol, and although it worked well, within three weeks I developed an allergy and had to be switched to Gabapentin. Over the next six months, my daily dose was steadily increased until I was taking 2400 mg per day, at which point my doctor felt I was maxed out on medicine, and suggested I see a surgeon. About this time I started to experience both the shocks and burning boring pains on my left side also. I did a lot of researche, and decided I would see if I was a candidate for MVD. The surgeon I saw was out of state, but is regarded as an expert in TN and all its treatments. I had MVD on m right side in Jan 2013,and while it did relieve the shocks, the burning pain remained. In August of 2013 I had a PNS unit implanted to control the pain, and it works very well . In October2013, I had MVD on the left side, and both types of pain were relieved. No longer take any meds for pain.
I wanted to share with you so you see that there are success stories. This is a complicated and difficult to treat disorder,but getting to the right doctor can make all the difference. Keep trying until you find one who has lots of experience with TN.
Best regards,
Christine
This is good information. I really don't have time to search the medical literature right now as I am still employed full time and trying to stay that way for another year or so. As I understand no drugs have been specifically developed to treat TN as there really is not a large enough market to support such an effort; the usual drug efficacy and safety data with respect to TN is not available from the pharmaceuticals
I hope I am in the ~ 22% where the drug was effective for 5 to 16 years.
Thanks again
Tom
Richard A. "Red" Lawhern said:
Interestingly, when I did a bit of checking at NLM, I found the following abstract:
The results of treating 143 patients with trigeminal neuralgia with carbamazepine (CBZ) over a 16-year period have been reviewed. The drug was effective initially with few mild side effects in 99 patients (69%). Of these, 19 developed resistance later, i.e. between 2 months and 10 years after commencing treatment, and required alternative measures. Of the remaining 80 (56%), the drug was effective in 49 for 1-4 years and in 31 for 5-16 years. Thirty-six patients (25%) failed to respond to CBZ initially and required alternative measures, as did 8 (6%) who were intolerant of the drug. One patient developed CBZ-induced water intoxication with hyponatraemia. Subsequently hyponatraemia was excluded in 17 patients who had been taking CBZ for between 4 months and 7 years. This study has thus confirmed the efficacy of CBZ in the treatment of trigeminal neuralgia and shown that it may continue to be effective for many years.
Thank you for sharing your story. It does give me hope and optimism that there is a way to cope with this affliction. I cannot imagine having both sides and all three nerves affected. You must be a courageous women!
Thanks again
Tom
Christine said:
Hi there I wanted to share my experience with you, as I consider my story one of success. I have bilateral TN, with both the shocks of TN1 and the chronic burning boring pain of TN2. All three branches are affected on both sides. I had experienced intermittent burning boring pain on my right side for almost ten years ( I have another condition, for which I had brain surgery in 2003, and the pain was attributed to that) before it became constant and unbearable; the shocks started about a month later. I saw my original neurosurgeon, then a neurologist that he recommended, and neither of them could give me a diagnosis. I did a lot of Internet searching, and saw another neurologist about six months later who agreed with " my own diagnosis" pf TN. I started on Tegretol, and although it worked well, within three weeks I developed an allergy and had to be switched to Gabapentin. Over the next six months, my daily dose was steadily increased until I was taking 2400 mg per day, at which point my doctor felt I was maxed out on medicine, and suggested I see a surgeon. About this time I started to experience both the shocks and burning boring pains on my left side also. I did a lot of researche, and decided I would see if I was a candidate for MVD. The surgeon I saw was out of state, but is regarded as an expert in TN and all its treatments. I had MVD on m right side in Jan 2013,and while it did relieve the shocks, the burning pain remained. In August of 2013 I had a PNS unit implanted to control the pain, and it works very well . In October2013, I had MVD on the left side, and both types of pain were relieved. No longer take any meds for pain. I wanted to share with you so you see that there are success stories. This is a complicated and difficult to treat disorder,but getting to the right doctor can make all the difference. Keep trying until you find one who has lots of experience with TN. Best regards, Christine
Glad you had a positive result from MVD, great. Could you clarify' In October2013, I had MVD on the left side, and both types of pain were relieved. No longer take any meds for pain.' Probably confused but are you suggesting/ saying both left and right sides benefited from left sided MVD?
Christine said:
Hi there I wanted to share my experience with you, as I consider my story one of success. I have bilateral TN, with both the shocks of TN1 and the chronic burning boring pain of TN2. All three branches are affected on both sides. I had experienced intermittent burning boring pain on my right side for almost ten years ( I have another condition, for which I had brain surgery in 2003, and the pain was attributed to that) before it became constant and unbearable; the shocks started about a month later. I saw my original neurosurgeon, then a neurologist that he recommended, and neither of them could give me a diagnosis. I did a lot of Internet searching, and saw another neurologist about six months later who agreed with " my own diagnosis" pf TN. I started on Tegretol, and although it worked well, within three weeks I developed an allergy and had to be switched to Gabapentin. Over the next six months, my daily dose was steadily increased until I was taking 2400 mg per day, at which point my doctor felt I was maxed out on medicine, and suggested I see a surgeon. About this time I started to experience both the shocks and burning boring pains on my left side also. I did a lot of researche, and decided I would see if I was a candidate for MVD. The surgeon I saw was out of state, but is regarded as an expert in TN and all its treatments. I had MVD on m right side in Jan 2013,and while it did relieve the shocks, the burning pain remained. In August of 2013 I had a PNS unit implanted to control the pain, and it works very well . In October2013, I had MVD on the left side, and both types of pain were relieved. No longer take any meds for pain. I wanted to share with you so you see that there are success stories. This is a complicated and difficult to treat disorder,but getting to the right doctor can make all the difference. Keep trying until you find one who has lots of experience with TN. Best regards, Christine
As I stated in my post, I had MVD on the right side that relieved the shocks, but not the burning boring pain. Seven months later, I had a peripheral nerve stimulator implanted to address the remaining pain on that side. I had MVD on my LEFT side three months later, and that completely relieved both the shocks and the burning boring pain on that side. Since the implant of the PNSon the right, and the successful MVD on the left, I am no longer taking ANY medication.
Christine
aiculsamoth said:
Hi Christine,
Glad you had a positive result from MVD, great. Could you clarify’ In October2013, I had MVD on the left side, and both types of pain were relieved. No longer take any meds for pain.’ Probably confused but are you suggesting/ saying both left and right sides benefited from left sided MVD?
Christine said:
Hi there I wanted to share my experience with you, as I consider my story one of success. I have bilateral TN, with both the shocks of TN1 and the chronic burning boring pain of TN2. All three branches are affected on both sides. I had experienced intermittent burning boring pain on my right side for almost ten years ( I have another condition, for which I had brain surgery in 2003, and the pain was attributed to that) before it became constant and unbearable; the shocks started about a month later. I saw my original neurosurgeon, then a neurologist that he recommended, and neither of them could give me a diagnosis. I did a lot of Internet searching, and saw another neurologist about six months later who agreed with " my own diagnosis" pf TN. I started on Tegretol, and although it worked well, within three weeks I developed an allergy and had to be switched to Gabapentin. Over the next six months, my daily dose was steadily increased until I was taking 2400 mg per day, at which point my doctor felt I was maxed out on medicine, and suggested I see a surgeon. About this time I started to experience both the shocks and burning boring pains on my left side also. I did a lot of researche, and decided I would see if I was a candidate for MVD. The surgeon I saw was out of state, but is regarded as an expert in TN and all its treatments. I had MVD on m right side in Jan 2013,and while it did relieve the shocks, the burning pain remained. In August of 2013 I had a PNS unit implanted to control the pain, and it works very well . In October2013, I had MVD on the left side, and both types of pain were relieved. No longer take any meds for pain. I wanted to share with you so you see that there are success stories. This is a complicated and difficult to treat disorder,but getting to the right doctor can make all the difference. Keep trying until you find one who has lots of experience with TN. Best regards, Christine
My pleasure , Tom. If I can answer any questions for you please ask! I
Tom said:
Christine
Thank you for sharing your story. It does give me hope and optimism that there is a way to cope with this affliction. I cannot imagine having both sides and all three nerves affected. You must be a courageous women!
Thanks again
Tom
Christine said:
Hi there I wanted to share my experience with you, as I consider my story one of success. I have bilateral TN, with both the shocks of TN1 and the chronic burning boring pain of TN2. All three branches are affected on both sides. I had experienced intermittent burning boring pain on my right side for almost ten years ( I have another condition, for which I had brain surgery in 2003, and the pain was attributed to that) before it became constant and unbearable; the shocks started about a month later. I saw my original neurosurgeon, then a neurologist that he recommended, and neither of them could give me a diagnosis. I did a lot of Internet searching, and saw another neurologist about six months later who agreed with " my own diagnosis" pf TN. I started on Tegretol, and although it worked well, within three weeks I developed an allergy and had to be switched to Gabapentin. Over the next six months, my daily dose was steadily increased until I was taking 2400 mg per day, at which point my doctor felt I was maxed out on medicine, and suggested I see a surgeon. About this time I started to experience both the shocks and burning boring pains on my left side also. I did a lot of researche, and decided I would see if I was a candidate for MVD. The surgeon I saw was out of state, but is regarded as an expert in TN and all its treatments. I had MVD on m right side in Jan 2013,and while it did relieve the shocks, the burning pain remained. In August of 2013 I had a PNS unit implanted to control the pain, and it works very well . In October2013, I had MVD on the left side, and both types of pain were relieved. No longer take any meds for pain. I wanted to share with you so you see that there are success stories. This is a complicated and difficult to treat disorder,but getting to the right doctor can make all the difference. Keep trying until you find one who has lots of experience with TN. Best regards, Christine
I don't have a success story for you, but I can tell you that two different radiologists from two different hospitals read my MRI and indicated it to be normal. When Johns Hopkins' specialists in TN read the same disk, the floating element (and thus source of the pain) was evident. Go to a TN specialist.
What a good end to your TN/ATN story Christine! I was quite up lifted by it…thank you…also so happy for you that your pain has gone!
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Christine said:
My pleasure , Tom. If I can answer any questions for you please ask! I
Tom said:
Christine
Thank you for sharing your story. It does give me hope and optimism that there is a way to cope with this affliction. I cannot imagine having both sides and all three nerves affected. You must be a courageous women!
Thanks again
Tom
Christine said:
Hi there I wanted to share my experience with you, as I consider my story one of success. I have bilateral TN, with both the shocks of TN1 and the chronic burning boring pain of TN2. All three branches are affected on both sides. I had experienced intermittent burning boring pain on my right side for almost ten years ( I have another condition, for which I had brain surgery in 2003, and the pain was attributed to that) before it became constant and unbearable; the shocks started about a month later. I saw my original neurosurgeon, then a neurologist that he recommended, and neither of them could give me a diagnosis. I did a lot of Internet searching, and saw another neurologist about six months later who agreed with " my own diagnosis" pf TN. I started on Tegretol, and although it worked well, within three weeks I developed an allergy and had to be switched to Gabapentin. Over the next six months, my daily dose was steadily increased until I was taking 2400 mg per day, at which point my doctor felt I was maxed out on medicine, and suggested I see a surgeon. About this time I started to experience both the shocks and burning boring pains on my left side also. I did a lot of researche, and decided I would see if I was a candidate for MVD. The surgeon I saw was out of state, but is regarded as an expert in TN and all its treatments. I had MVD on m right side in Jan 2013,and while it did relieve the shocks, the burning pain remained. In August of 2013 I had a PNS unit implanted to control the pain, and it works very well . In October2013, I had MVD on the left side, and both types of pain were relieved. No longer take any meds for pain. I wanted to share with you so you see that there are success stories. This is a complicated and difficult to treat disorder,but getting to the right doctor can make all the difference. Keep trying until you find one who has lots of experience with TN. Best regards, Christine
Hi Tom - I am another success story and I do come on here now and then to tell my story and offer hope and support. I can easily remember the point of where you are. I was diagnosed quickly in about the same manor as you by a neurologist - you have TN, here are some meds. He never even wanted to see me again after a "normal" MRI. I then had to proceed to educate myself and quickly ordered and read the book, Striking Back. I had TN 1 symptoms for 9 months, bounced around multiple doctor and surgeons, and was on two different drugs that relieved or softened most of the shocks some of the time but I could in no way live with the side effects. I published a detailed story about my ordeal and my path that led me to a successful MVD more than two years ago by Dr. Ken Casey (co-authored "Striking Back"). My biggest advice is to find the experts in TN - there are a few exceptional TN surgeons out there that you will likely need to travel to. Here is my story, I do hope it helps and that you will find your own path . . . Trigeminal Neuralgia: How I Survived the Worst Pain Ever.
