I am confused as to what is happening and if this is a 'normal' pattern of TN.
I have been experiencing electric shock twinges every now and again for 6 months ( ouch... but definately not unbearable) then for the last 3 - 4 weeks I have been in unbearable, intolerable pain which has literally thrown me on the floor in agony. These attacks could last up to 10 minutes at a time and happen up to 6 times a day with the horrible shocks inbetween.
I was put on Tegretol ( small dose to start then to be built up) it made me feel hazy, uncoordinated and depressed, and I was only on it for 5 days! On the brighter side, within 2 days my pain had gone, which was bliss!!! I then took the gamble on coming off the medication to see what would happen and strangely enough the pain has still not returned a whole week later. I guess at this stage I am wondering what this means? am I in remission? was it a one off event for me? can TN be viral? or is this normal of TN and it will rear it's ugly head once again?
I suppose I am really after some answers as I am seeing a Neuro for the first time this coming Monday and at this stage I feel a little silly seeing him considering the pain has gone.
I have read many times that Type I, or Classic Trigeminal Neuralgia patients often have long periods of remission. This could very well be the case.
Please keep us informed of what your Neuro has to say about this. No need to feel silly! This is interesting. Here's hoping this is a PERMANENT remission. Keep us posted!
classic trigeminal neuralgia is believed to be caused by a blood vessel compressing the trigeminal nerve. the compression causes the myelin sheath, which is the protective coating of the nerve, to wear away. once the coating wears away to expose the internal nerve fibers, the "shocks" begin to occur, because the beating blood vessel causes a sort of electric discharge to the malfunctioning nerve.
the myelin repairs itself. however, the rate at which it does is different for everyone, due to age, overall health and genetics. the periods of remission one experiences are in fact a healthy regeneration of myelin against the vessel compression. the return of shocks means your myelin has worn away again. over time, the nerve loses its ability to repair and replenish as quickly.
you are likely in remission, your nerve having rebuilt its myelin, and will likely experience another round of TN pain once the myelin has worn away again. the time it will take to get to this pain stage is unknown, for the above stated reasons. this cyclical pattern is considered normal for classic TN.
Both Stef and Vespers answers are pretty much correct - however the prescription of Tegretol is in itself a diagnostic tool and your Neurologist will confirm you have TN when you tell him that after taking Tegretol your pain diminished or disappeared.
The stopping of Tegretol suddenly is something to be cautious of as it is a anti-seizure medicine and could have untold effects on your body - these things need to be weaned off.
It is possible to stay off the meds if you wish to, but as the other girls have mentioned here - it is possible your TN is now in remission - that may last days or even years in remission initially. I myself have had TN so long - remission no longer occurs for me. But the theory is that you should maintain what they call a "maintenance" dose of the medication - often a very low dose to help delay the return of the pain for when it does return.
I'm sorry to say that if it is trigeminal neuralgia - then it will one day return, but don't be scared by this - it can sound terrifying to someone new to the condition - but the return as I said can be anywhere up to a couple of years.
Unfortunately TN is not a viral illness but 90% of the time is caused by damage to the trigeminal nerve caused by a compression just as Vesper states. Early on in the illness, this damage is minimal hence why the remissions occur more frequently and last longer as it's easier for the body to repair small amounts of damage.
Also, do not feel silly seeing the Neurologist without any pain, I used to feel that way earlier on - but not any more. Just tell him what you told us about how after taking the Tegretol for 5 days the pain went away. That's what he or she will want to know. Follow that doctors advice and let us know what he says to you in your appointment.
May I ask, if you were started on a small dose - what was that dose, and how quickly were you told to build up the dose you were on? What dose were you taking then when you started and when you stopped Tegretol?
Well I have definately learnt alot from your answer! This is possibly the best description of what can cause TN I have read, so thankyou for taking the time to explain this to me x
vesper venustas said:
classic trigeminal neuralgia is believed to be caused by a blood vessel compressing the trigeminal nerve. the compression causes the myelin sheath, which is the protective coating of the nerve, to wear away. once the coating wears away to expose the internal nerve fibers, the "shocks" begin to occur, because the beating blood vessel causes a sort of electric discharge to the malfunctioning nerve.
the myelin repairs itself. however, the rate at which it does is different for everyone, due to age, overall health and genetics. the periods of remission one experiences are in fact a healthy regeneration of myelin against the vessel compression. the return of shocks means your myelin has worn away again. over time, the nerve loses its ability to repair and replenish as quickly.
you are likely in remission, your nerve having rebuilt its myelin, and will likely experience another round of TN pain once the myelin has worn away again. the time it will take to get to this pain stage is unknown, for the above stated reasons. this cyclical pattern is considered normal for classic TN.
Here's hoping hey! I had a nagging feeling that I was possibly in remission. Gee I pray it stays and it can be catching through the computer so you all get the peace I am experiencing at the moment!
xx Stef said:
Hi, Rachael!
I have read many times that Type I, or Classic Trigeminal Neuralgia patients often have long periods of remission. This could very well be the case.
Please keep us informed of what your Neuro has to say about this. No need to feel silly! This is interesting. Here's hoping this is a PERMANENT remission. Keep us posted!
Hi Rachel, I have had TN since 2004/2005. I would have short periods of pain and then no pain. I had no pain for 2 1/4 years and now since Dec 16th I have been on Neurontin since to manage the pain. I have an eperdermoid cyst irratating the nerve, NOT the typical TN. So going in periods of no pain is not unusual. Good luck.
ok, so I went and saw the Neuro today ( nice guy, thank goodness) after looking at my MRI scan and doing numerous tests he said I dont have MS or a tumor, yay for positives!! He did however say I have TN and the scan shows an abnormally large blood vessel right near the trigemenal nerve.
He said, as like many of you, I am currently in remission and he doesnt know how long this will last or even if it is permanent.....here's hoping!
In the meantime he told me to go and live life pain - free and start on a different medication should the pain return called pregabalin or brand named 'Lyrica' which is a new drug to Australia and not currently on the PBS. This medication is meant to be the 'bees knees' so we will see if and when I need it.
Once again I will say I wish remission was contagious and you all could get it from me!
you have your answer. you have a neurovascular conflict. the regular scan is showing the vessel; not always common for people who have TN. remember my post; your remissions will not last. Lyrica is a less newer drug here in the states; mixed results for TN.
consider a neurosurgical consult.
good luck,
vesper
Rachael Manhall said:
ok, so I went and saw the Neuro today ( nice guy, thank goodness) after looking at my MRI scan and doing numerous tests he said I dont have MS or a tumor, yay for positives!! He did however say I have TN and the scan shows an abnormally large blood vessel right near the trigemenal nerve.
He said, as like many of you, I am currently in remission and he doesnt know how long this will last or even if it is permanent.....here's hoping!
In the meantime he told me to go and live life pain - free and start on a different medication should the pain return called pregabalin or brand named 'Lyrica' which is a new drug to Australia and not currently on the PBS. This medication is meant to be the 'bees knees' so we will see if and when I need it.
Once again I will say I wish remission was contagious and you all could get it from me!
I have TN for 35 years and I have suffered tremendously. I was misdiagnosed with it and had to treat myself over the years. I spent thousands of dollars on trying to figure it out as doctors do not have a clue how to help us. I used chiropractors for years and had much success but I finally reached a point where i neglected going like I should have and one day I no longer got any relief from chiropractic help. i was then directed to a dentist who diagnosed me with TN and I went to a Neurologist and placed on trileptol. It helps me totally but I also found a diet that helped me even more.
What diet, please? I was just diagnosed(again by a dentist) and Im taking tegretol, which helps, but I'll try anything. My ARNP has decided I have depressive disorder(and who wouldn't be depressed) and "we have to address my depression before we can address my pain issues". Now if I see another Dr., that dx will follow me, for the rest of my life. She saw me twice for about 30 min. She refuses to refer me to a neurologist. Does anyone know of a way to get a false dx like that taken off?
Mary Russell said:
I have TN for 35 years and I have suffered tremendously. I was misdiagnosed with it and had to treat myself over the years. I spent thousands of dollars on trying to figure it out as doctors do not have a clue how to help us. I used chiropractors for years and had much success but I finally reached a point where i neglected going like I should have and one day I no longer got any relief from chiropractic help. i was then directed to a dentist who diagnosed me with TN and I went to a Neurologist and placed on trileptol. It helps me totally but I also found a diet that helped me even more.
Hi Rachel,
Do not feel silly seeing your neuro. This is the behavior of TN. When we least expect it as you said gone. Remissions and exaserbations of attacks. Thats wonderful , you have no pain. Seeing your doctor is not a mistake. I had a remission for many many years then it cMe back with a fury. I am not saying yours will return or not. Its a crazy disease that makes us all crazy. Will say a prayer for you that your remission will continue. All my best. Let us know what neuro says.
My Best
Joanne
Hi Rachel, happy to hear you are in remission. When I’m on tegretol and the pain finally seems to go away I tend to play doctor and come off the meds only to find that I last 3 weeks before I’m in that horrible pain state. As others have mentioned its dangerous to just stop tegretol, I learnt the hard way. I truly hope yr remission is everlasting.
Betty.
I just want to add that Rachel posted this thread in 2011, I hope she is still pain free.
Cesarsjewels,
You need to see a NEW doctor, and explain that you aren’t depressed, you have TN and need to be treated for it. You might suffer from anxiety as a result of trying to deal with TN but which came first? The TN or symptoms of depression?
Either way, even if you are dealing with depression your current symptoms need to be addressed, you need to see a neurologist and get on medication to deal with your pain.
Unfortunately we must all advocate for ourselves! Don’t give up, you need a doctor to support you and help you.
Don’t stop until your listened too.
(( hugs)) Mimi
I am glad to give it to you. Just remember when you do the diet, follow it carefully. Also, take note especially of the trigger foods and stay away from them. I have learned something by this diet. Some foods will bother me that I never knew did. You can tell if a food triggers it by putting it to you rmouth and you will have a almost immediate sharp pain. i can even touch them to my lips and it will set it off but anyway, here is the email of the man who will mail you the diet for free. he is really nice. Frank Sherwood 1037 N. Old Woodward Ave. (Unit 1) Birmingham, MI 48009 Phone: 248-642-7235 Email: frank@sokolitz.comPlease put "TN Diet" in the "Subject" box
Mary
cesarsjewels said:
What diet, please? I was just diagnosed(again by a dentist) and Im taking tegretol, which helps, but I'll try anything. My ARNP has decided I have depressive disorder(and who wouldn't be depressed) and "we have to address my depression before we can address my pain issues". Now if I see another Dr., that dx will follow me, for the rest of my life. She saw me twice for about 30 min. She refuses to refer me to a neurologist. Does anyone know of a way to get a false dx like that taken off?
Mary Russell said:
I have TN for 35 years and I have suffered tremendously. I was misdiagnosed with it and had to treat myself over the years. I spent thousands of dollars on trying to figure it out as doctors do not have a clue how to help us. I used chiropractors for years and had much success but I finally reached a point where i neglected going like I should have and one day I no longer got any relief from chiropractic help. i was then directed to a dentist who diagnosed me with TN and I went to a Neurologist and placed on trileptol. It helps me totally but I also found a diet that helped me even more.
