Aa
bilateral TN
I have seen 2 neuro-surgeons that refuse to do anything to me. why? Cause they say they fear I have MS. Whenever my TN started in 03 it was right side. In Jan of this year it swapped to Left side. I have seen 2 neurologist in the past. Never have they mentioned the possibility of MS.
Fired Neuro and my IMP put me on triliptal and tegretol.Real intelligent huh? Well I blew up like the goodyear blimp and feltl absolutely terrible. Like I was disconnected from my body. Had severe side effects. I was just tired of all of it. Luckily from 2003 til 2006 I only had 2 attacks a year. These attacks would last for a few months though.
In 2006 I started to have more frequent attacks. Now it is almost nonstop. The bouts of pain are only a few seconds but then I only have a few seconds to minutes without. Currently, my IMP has decided to job share with another IM. She set me up with the surgeons that refused me. I have just this week found a Neurologi st to see in Memphis TN which is a little over 3 hours away. I want to know, is it common for neuro-surgeons to refuse the Nerve Decompression and Gamma knife because they think you may have MS that hasn't shown up yet? I understand that they are hesitant..but why are they saying MS? and Why now after all this time no one has ever mentioned it before. With the exception of a nurse practitioner that gave me a shot for poison ivey. She looked at my chart and said did you know people at your age with TN usually have MS? ask my IMP he said she shouldn't have said this to me and that was the end of it until now. Can any one shed light?
Fired Neuro and my IMP put me on triliptal and tegretol.Real intelligent huh? Well I blew up like the goodyear blimp and feltl absolutely terrible. Like I was disconnected from my body. Had severe side effects. I was just tired of all of it. Luckily from 2003 til 2006 I only had 2 attacks a year. These attacks would last for a few months though.
In 2006 I started to have more frequent attacks. Now it is almost nonstop. The bouts of pain are only a few seconds but then I only have a few seconds to minutes without. Currently, my IMP has decided to job share with another IM. She set me up with the surgeons that refused me. I have just this week found a Neurologi st to see in Memphis TN which is a little over 3 hours away. I want to know, is it common for neuro-surgeons to refuse the Nerve Decompression and Gamma knife because they think you may have MS that hasn't shown up yet? I understand that they are hesitant..but why are they saying MS? and Why now after all this time no one has ever mentioned it before. With the exception of a nurse practitioner that gave me a shot for poison ivey. She looked at my chart and said did you know people at your age with TN usually have MS? ask my IMP he said she shouldn't have said this to me and that was the end of it until now. Can any one shed light?
Hi neuralgia--yes, the connections and overlap between fibromyalgia and autoimmune disorders, the connections with stress, etc. are interesting (and confusing). Too much for me to figure out. :)
I wouldn't say I have trigeminal neuralgia as it typically occurs, because I have had very little in the way of pain. The very first symptom/episode was painful (excruciating but mercifully short) shocks under my ears in 1999, shortly before hearing loss, dizziness, and many neurological symptoms began.
Those shocks went away after a couple of weeks and were so scattered and few that I didn't go to the doctor at that time. (They were on both sides, though mainly the left.)
Subsequently I've had almost daily painless shocks in my face, and when I first saw a diagram of the trigeminal nerve I got a "shock" of recognition! That's MY face-shocks!!
I also have had many paresthesias and stabs, etc. in my face, itchy or crawling or numb/warm spots, all kinds of really weird electrical and other symptoms, but nothing to compare to the pain of real trigeminal neuralgia. Thus, I believe my trigeminal nerves have somehow been affected in a very mild way.
I have never been officially diagnosed with anything, but 8 years ago a neurologist effectively told me I had MS--yet later they discarded that hypothesis and stopped following me. I haven't seen a neurologist in 5 years. A couple of doctors said they think I have fibromyalgia, but I'm not sure on what basis--I certainly don't fulfill the criteria for sleep disturbance, tender points, etc., but a rheumatologist said you don't have to have those things to have fibro. Whatever. The doctors are just not interested in me because I don't have severe pain, just achiness that I keep under control with OTC meds.
If someone told me I had a very, very mild case of MS and a mild case of fibromyalgia and a ghost of a case of TN, I would not argue with any of those things. But no one cares to diagnose anything, and that's OK too.
Best of luck to you and thanks for your observations and information!
Nancy T.
I wouldn't say I have trigeminal neuralgia as it typically occurs, because I have had very little in the way of pain. The very first symptom/episode was painful (excruciating but mercifully short) shocks under my ears in 1999, shortly before hearing loss, dizziness, and many neurological symptoms began.
Those shocks went away after a couple of weeks and were so scattered and few that I didn't go to the doctor at that time. (They were on both sides, though mainly the left.)
Subsequently I've had almost daily painless shocks in my face, and when I first saw a diagram of the trigeminal nerve I got a "shock" of recognition! That's MY face-shocks!!
I also have had many paresthesias and stabs, etc. in my face, itchy or crawling or numb/warm spots, all kinds of really weird electrical and other symptoms, but nothing to compare to the pain of real trigeminal neuralgia. Thus, I believe my trigeminal nerves have somehow been affected in a very mild way.
I have never been officially diagnosed with anything, but 8 years ago a neurologist effectively told me I had MS--yet later they discarded that hypothesis and stopped following me. I haven't seen a neurologist in 5 years. A couple of doctors said they think I have fibromyalgia, but I'm not sure on what basis--I certainly don't fulfill the criteria for sleep disturbance, tender points, etc., but a rheumatologist said you don't have to have those things to have fibro. Whatever. The doctors are just not interested in me because I don't have severe pain, just achiness that I keep under control with OTC meds.
If someone told me I had a very, very mild case of MS and a mild case of fibromyalgia and a ghost of a case of TN, I would not argue with any of those things. But no one cares to diagnose anything, and that's OK too.
Best of luck to you and thanks for your observations and information!
Nancy T.
Hey Nancy,
I know that fibromyalgia isn't really considered autoimmune, but it does tend to run in families where autoimmune diseases are present and it is not all that uncommon to see fibromyalgia present with other autoimmune issues (so I put it in parentheses). I don't know a whole lot about this, but I started looking into it when I read in a Sjogrens Syndrome handbook that I have that trigeminal neuralgia (and carpel tunnel) commonly affect Sjogens patients (which I was diagosed with in my early teens). There has recently been question in the research community regarding immune involvement in Sjogrens, Fibromyalgia, RA, and other "immune-like" diseases due due to the direct involvement of stress and the way that stress affects the immune system (there is some interestesting research ongoing in this area that points to similar physiological processes). Which makes the fact that the first line treatment in fibromyalgia usually involves antidepressants and antiseizure meds make more sense (similar to trigeminal neuralgia, I suppose)... interesting.
Regardless, I guess they don't really know completely what causes fibromyalgia, but the relationship between the "triggers" and symptoms present in fibromyalgia and other autoimmune disorders and trigeminal neuralgia seems to be beyond coincidence, right? Further, you make an interesting point about the potential misdiagnosis of fibromyalgia for MS and how this could point to an entirely different cause and course of treatment for trigeminal neuralgia pain. I assume that you have trigeminal neuralgia? but out of curiousity, do have fibromyalgia or MS? If not, how long did your neurologist let your trigeminal neuralgia go before ruling out MS?
Thanks!
I know that fibromyalgia isn't really considered autoimmune, but it does tend to run in families where autoimmune diseases are present and it is not all that uncommon to see fibromyalgia present with other autoimmune issues (so I put it in parentheses). I don't know a whole lot about this, but I started looking into it when I read in a Sjogrens Syndrome handbook that I have that trigeminal neuralgia (and carpel tunnel) commonly affect Sjogens patients (which I was diagosed with in my early teens). There has recently been question in the research community regarding immune involvement in Sjogrens, Fibromyalgia, RA, and other "immune-like" diseases due due to the direct involvement of stress and the way that stress affects the immune system (there is some interestesting research ongoing in this area that points to similar physiological processes). Which makes the fact that the first line treatment in fibromyalgia usually involves antidepressants and antiseizure meds make more sense (similar to trigeminal neuralgia, I suppose)... interesting.
Regardless, I guess they don't really know completely what causes fibromyalgia, but the relationship between the "triggers" and symptoms present in fibromyalgia and other autoimmune disorders and trigeminal neuralgia seems to be beyond coincidence, right? Further, you make an interesting point about the potential misdiagnosis of fibromyalgia for MS and how this could point to an entirely different cause and course of treatment for trigeminal neuralgia pain. I assume that you have trigeminal neuralgia? but out of curiousity, do have fibromyalgia or MS? If not, how long did your neurologist let your trigeminal neuralgia go before ruling out MS?
Thanks!
That is very interesting what you say about TN incidence being higher in fibromyalgia. (Which, by the way, is NOT an autoimmune disease--it's a disorder of central pain processing.)
This is the first I've heard of that, but the first thought that springs to my mind (without having done any research) is, how many of those supposed fibromyalgia patients with TN in fact have MS?
It sometimes happens (as my neurologist volunteered, and I've read elsewhere) that people originally told they have fibromyalgia end up having MS.
Just a thought...
Nancy T.
This is the first I've heard of that, but the first thought that springs to my mind (without having done any research) is, how many of those supposed fibromyalgia patients with TN in fact have MS?
It sometimes happens (as my neurologist volunteered, and I've read elsewhere) that people originally told they have fibromyalgia end up having MS.
Just a thought...
Nancy T.
Hi there. I am sorry to hear of your frustrations. I am 31 and was diagnosed with atypical facial pain about 8 years ago. It wasn't until recently that I started showing typical TN symptoms. Forgive me in advance if I'm giving you any information that you may already know, but from my understanding they should screen you for MS upon diagnosis as well as look for any obvious neurological cause (such as tumors) by an MRI. Over time as repeated MRIs and other symptomatic evaluations should be performed if they are unable to find an otherwise specific cause for TN. The symptoms of MS can be similar in the sense that the nerves begin to become demylenated, or lose their protective/conductive coating. This too can cause nerve pain. And unfortunately it is also my understanding it that treating TN surgically will have no positive outcome if the cause of the pain is MS related.
Another reason they may be waiting to see if you have any MS symptoms present is because of your other underlying medical conditions? Something else to note is that they have found an increased incidence of TN in those with certain other autoimmune diseases (fibromyalgia). I believe there is information about this on the TN association site. Have you looked at the TN association website? It offers some really useful information and there are educated people to contact if you have any questions or need physician referrals for your area through the support groups.
Unfortunately, there are a number of causes for facial neuralgias and sometimes the only way to determine cause is by evaluating and eliminating certain treatments of symptoms. I too had 2 different neurosurgeons at very well known research hopsitals (so I trusted them fully) tell me that they wouldn't do anything for me, simply because the procedures such as decompression and gamma knife are too risky if they aren't certain that the nerve is being compressed etc. I have tried too many antiseizure drugs and antidepressants to count, and the only that has worked relatively well for me is gabapentin (neurontin) at an unbelievably high dose. Additionally, I take pain medications to relieve some discomfort from ongoing atypical pain, but they really do nothing for the typical TN attacks.
What has really provided me the most relief are nerve blocks (glycerol rhizotomy procedures). I don't believe that these are considered a neurosurgical procedure. I have had upward around 10 done over the past 6 years and was having them done by an anesthesiologist every 3-6 months. For this, seeing an anesthesiologist that specializes in pain management and neuralgia may prove more useful than a neurosurgeon? Something to consider speaking to your neurologist about? If they do believe that your cause is MS-related, these may also do no good. But from my experience and opinion, they are worth a shot (literally) regardless of what they believe may be the underlying cause. They are relatively painless, and are done as a quick outpatient procedure under a local anesthetic (there are a number of sites that detail this procedure online, so look it up if interested). They are nothing to take lightly as it does involve sticking a rather large needle through your face/skull and close to the brain, so make sure that if this is something you consider, that you find a skilled anesthesiologist with experience treating patients with facial neuralgias.
Hope this was somewhat helpful.
Good luck!
Another reason they may be waiting to see if you have any MS symptoms present is because of your other underlying medical conditions? Something else to note is that they have found an increased incidence of TN in those with certain other autoimmune diseases (fibromyalgia). I believe there is information about this on the TN association site. Have you looked at the TN association website? It offers some really useful information and there are educated people to contact if you have any questions or need physician referrals for your area through the support groups.
Unfortunately, there are a number of causes for facial neuralgias and sometimes the only way to determine cause is by evaluating and eliminating certain treatments of symptoms. I too had 2 different neurosurgeons at very well known research hopsitals (so I trusted them fully) tell me that they wouldn't do anything for me, simply because the procedures such as decompression and gamma knife are too risky if they aren't certain that the nerve is being compressed etc. I have tried too many antiseizure drugs and antidepressants to count, and the only that has worked relatively well for me is gabapentin (neurontin) at an unbelievably high dose. Additionally, I take pain medications to relieve some discomfort from ongoing atypical pain, but they really do nothing for the typical TN attacks.
What has really provided me the most relief are nerve blocks (glycerol rhizotomy procedures). I don't believe that these are considered a neurosurgical procedure. I have had upward around 10 done over the past 6 years and was having them done by an anesthesiologist every 3-6 months. For this, seeing an anesthesiologist that specializes in pain management and neuralgia may prove more useful than a neurosurgeon? Something to consider speaking to your neurologist about? If they do believe that your cause is MS-related, these may also do no good. But from my experience and opinion, they are worth a shot (literally) regardless of what they believe may be the underlying cause. They are relatively painless, and are done as a quick outpatient procedure under a local anesthetic (there are a number of sites that detail this procedure online, so look it up if interested). They are nothing to take lightly as it does involve sticking a rather large needle through your face/skull and close to the brain, so make sure that if this is something you consider, that you find a skilled anesthesiologist with experience treating patients with facial neuralgias.
Hope this was somewhat helpful.
Good luck!
If you want to help your body fight, then try this.
This is the alternative treatment for MS and TN or if you are having MS symptoms. Do it and you will know and feel improvement in quality of life.You can also do it alongside any medical treatment.
You need to help your body to build up your immune system.The breathing exercises - pranayam is a holistic approach creating extra oxygen supply in the body and will slowly help with the health problem.Do the pranayam to see the benefits.Build up your timing slowly and after four weeks at the suggested maximum duration you will start to notice benefits gradually.If you feel tired or dizzy,stop and resume later.
What is known: pranayam helps the body heal itself. How it works in the body is not known – but people may build their own theory. You have to do it yourself for your benefit.
The small print: Keep doing pranayam after you are better for minimum 30 minutes a day for rest of life to maintain health.
People who have been treated successfully, should do pranayam as well, as there is a chance of recurrence.
The pranayam techniques:
Bhastrika - Take a long deep breath into the lungs(chest not tummy) via the nose and then completely breathe out through the nose.Duration upto 5 minutes.
Kapalbhati -(Do it before eating) Push air forcefully out through the nose about once per second. Stomach will itself go in(contract in). The breathing in(through the nose) will happen automatically. Establish a rhythm and do for 20 to 30 minutes twice a day.(Max 60 min/day) Not for pregnant women. Seriously ill people do it very gently. If you feel pain, do not do this.
Anulom Vilom - Close your right nostril with thumb and deep breath-in through left nostril
then – close left nostril with two fingers and breath-out through right nostril
then -keeping the left nostril closed deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 20 to 30 minutes twice a day(maximum 60 minutes in one day).
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.
Bhramri Pranayam -Close eyes. Close ears with thumb, index finger on forehead, and rest three fingers on base of nose touching eyes. Breathe in through nose. And now breathe out through nose while humming like a bee.
Duration : 5 to 10 times
Only by doing you will benefit and will feel good that you can do something to help the body.Copy and print this to improve your technique and stay focused.This is simplified pranayam for everyone and you do not have to go to classes to learn. This is for life, unlike short term classes where you do it in the class then stop when classes are over.
This is the alternative treatment for MS and TN or if you are having MS symptoms. Do it and you will know and feel improvement in quality of life.You can also do it alongside any medical treatment.
You need to help your body to build up your immune system.The breathing exercises - pranayam is a holistic approach creating extra oxygen supply in the body and will slowly help with the health problem.Do the pranayam to see the benefits.Build up your timing slowly and after four weeks at the suggested maximum duration you will start to notice benefits gradually.If you feel tired or dizzy,stop and resume later.
What is known: pranayam helps the body heal itself. How it works in the body is not known – but people may build their own theory. You have to do it yourself for your benefit.
The small print: Keep doing pranayam after you are better for minimum 30 minutes a day for rest of life to maintain health.
People who have been treated successfully, should do pranayam as well, as there is a chance of recurrence.
The pranayam techniques:
Bhastrika - Take a long deep breath into the lungs(chest not tummy) via the nose and then completely breathe out through the nose.Duration upto 5 minutes.
Kapalbhati -(Do it before eating) Push air forcefully out through the nose about once per second. Stomach will itself go in(contract in). The breathing in(through the nose) will happen automatically. Establish a rhythm and do for 20 to 30 minutes twice a day.(Max 60 min/day) Not for pregnant women. Seriously ill people do it very gently. If you feel pain, do not do this.
Anulom Vilom - Close your right nostril with thumb and deep breath-in through left nostril
then – close left nostril with two fingers and breath-out through right nostril
then -keeping the left nostril closed deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 20 to 30 minutes twice a day(maximum 60 minutes in one day).
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.
Bhramri Pranayam -Close eyes. Close ears with thumb, index finger on forehead, and rest three fingers on base of nose touching eyes. Breathe in through nose. And now breathe out through nose while humming like a bee.
Duration : 5 to 10 times
Only by doing you will benefit and will feel good that you can do something to help the body.Copy and print this to improve your technique and stay focused.This is simplified pranayam for everyone and you do not have to go to classes to learn. This is for life, unlike short term classes where you do it in the class then stop when classes are over.
I am to see a Neurologist is Memphis Tenn. next week. Hopefully I will be able to get some answers. He specializes in MS and TN he has more specialties but those are the ones I was most interested in.
Thank you for your help.
Thank you for your help.
hi,
I have bilateral TN which started when i was 15 (im now 21) so MS would seem a high chance cause for me, however im determined i dont have it and no tests so far show anything, my nuerologist finally reffered me to a nuero surgeon and Im having the MVD surgery done on both sides, one in novermber and one in december all things going to plan. My surgeon said that if he went in and couldnt find a blood vessel compressing the nerve it would likely point to MS and he could still at that point damage the nerve to effectively numb if i wished. I would try someone new! best of luck
I have bilateral TN which started when i was 15 (im now 21) so MS would seem a high chance cause for me, however im determined i dont have it and no tests so far show anything, my nuerologist finally reffered me to a nuero surgeon and Im having the MVD surgery done on both sides, one in novermber and one in december all things going to plan. My surgeon said that if he went in and couldnt find a blood vessel compressing the nerve it would likely point to MS and he could still at that point damage the nerve to effectively numb if i wished. I would try someone new! best of luck
i have suffered bilaterial trigeminal neuralgia, the pain first started in 1963 on the right side, i ended up with surgery in which i lost 2nd and 3rd division of trigeminal nerve
result no pain now but the right side face is permanently numb.
in 1974 i got the pain on the left side and since than i am on tegretol and neurontin. i have been lucky with long period of remission some time for more than two years. but the pain sure returns, controlled with medicine.
i think MS could be cause of bilaterial tn. though i have not tested my self for MS till now.
you can try nerontin300mg and tegreol 200mg twice a day and see if it can arrest the pain.
from what i have heard, if MS is the cause than no surgery will do any good, as the pain is most likely to return.
hope u are feeling better.
yakub
result no pain now but the right side face is permanently numb.
in 1974 i got the pain on the left side and since than i am on tegretol and neurontin. i have been lucky with long period of remission some time for more than two years. but the pain sure returns, controlled with medicine.
i think MS could be cause of bilaterial tn. though i have not tested my self for MS till now.
you can try nerontin300mg and tegreol 200mg twice a day and see if it can arrest the pain.
from what i have heard, if MS is the cause than no surgery will do any good, as the pain is most likely to return.
hope u are feeling better.
yakub
The fired neuro is a real jerk and I saw his partner before that. So I have been neuro less for several years.
Need I mention I have some signs of MS but I also have diagnosis of FMS and CFS.
B-12 deficency (shots once per month) Graves' disease, IBS, I could do this all day. LOL!
My right arm is totally messed up. I have shooting pains from elbow down and cannot pick up things or write very long. Just a couple days ago my right leg started shaking uncontrollable never had that before. when I stood up had the feeling that my legs were too heavy to lift and very weak.
Please anyone if you could shed a bit of light on this I would appreciate. Especially Neuro!
Need I mention I have some signs of MS but I also have diagnosis of FMS and CFS.
B-12 deficency (shots once per month) Graves' disease, IBS, I could do this all day. LOL!
My right arm is totally messed up. I have shooting pains from elbow down and cannot pick up things or write very long. Just a couple days ago my right leg started shaking uncontrollable never had that before. when I stood up had the feeling that my legs were too heavy to lift and very weak.
Please anyone if you could shed a bit of light on this I would appreciate. Especially Neuro!
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