Every doc that I have asked: “What caused this?”, has said: “We don’t know”. Well, after weeks of researching a lot of factors, I have an opinion. First, I think people who develop this disorder are born with a genetic anomaly that has to do with the brain’s ability to deal with stress. That anomaly has to do with our ability to produce the GABA inhibitors that allow our brains to calm down or remain calm during and after what we perceive as a stressful event. We are born with a predisposition to low levels of GABA inhibitor production by the brains neurotransmitters. Since these neurons (? – not sure they are called that), already have a hard time stopping the brain from firing, we “stress out” easier and more often. A lot of stress (or, in our case, a lot of inability to deal more effectively with stress), has a dramatic affect on the brain. There was a study done on Iraq war soldiers that proved that under stress, toxins that normally would not have passed thru the blood brain barrier, got thru the barrier and entered the blood vessels inside the brain. The blood brain barrier (BBB for short) prevents or filters all toxins that have entered our bloodstream. Everyone is exposed to toxins on a daily basis – environmental, smoking, household toxins, food toxins etc. Since we experience more stress, our BBB allows more toxins into the vessels inside our brains. At some point, one or more of the vessels goes spastic and touches some branch of the trigeminal nerve. The vessels go spastic because of the many or perhaps even a specific toxin that has entered it. We already have low levels of GABA inhibitors that protect our nerve cells from firing so much. Now, the blood vessels are doing flip flops on the nerve endings and creating this pain sensation (in our case, in our face or head). The drugs that are prescribed for this pain are almost all GABA inhibitors – a synthetic way to get our brains to stop firing the nerve cells that cause this pain. To get to the point of this, and to quote Lady Gaga – “I was born this way”. It isn’t psychological, it isn’t caused by something I did or did not do, It isn’t something I had any control over. I am not dysfunctional because I have a hard time handling stress. I can’t blame my parents or my job. I was just born this way.
Interesting theory. Did you see that video someone posted about being close to a cure? Dr. Alan is messing with injecting new cells to correct the signals that our own cells send.... in mice, the cells reproduce, and the problems with TN are gone. So in some ways, what you say supports his research..... It would be interesting to know what percentage of people were in very high stress positions in their lives (work, school, family) when first developed. I can tell you that for the 3 years prior to being diagnosed were the most stressful in my life.
There is some interesting info I think??? The drug is called NKTR-192. It has passed phase 1 on 10 people.
Society for Neuroscience
Stephan Harrison PhD, NCKTAR Therapudics, Dr. David J. Fink University of Michigan, Alan Basbaum University San Francisco
I though it was caused in most cases by a blood vessel touching the nerve, or trauma to the nerve. Do you think stress plays a part in that or is this a different theory all together?
Lisa - yes, I did see the video regarding nerve replacement. However, wouldn't it be better to address the root cause as well as a long term cure? I mean, if the root cause is a genetic anomoly which prevents the brain from producing GABA inhibitor cells, then shouldn't research also be done to find a treatment to correct the shortage of GABA inhibitors? This is the theory behind why the antiseizure meds work on this pain. But the synthetic versions that we are prescribed, sometimes cannot always get past the blood brain barrier - hence why some people do well on the drugs and why for others they have no effect. Also, the synthetic versions have really awful side effects. There is current research on a new drug called CP-115. It is still in the trial stages. Since it is also a synthetic, it may not be the miracle drug we are all looking for.
Kimburlee - I thought the nerve cell replacement video had more to do with a form of surgery - rather than a drug. Am I misunderstanding it?
Elstep - My neurosurgeon said he has seen MRI's of people who have the vessel touching the trigeminal nerve and these people have no signs of TN or any symptoms. Stress plays a major role in determining who experiences this pain because of maybe, our genetic predisposition to make such low levels of GABA inhibitors. Those few of us who have this, experience stress differently than "normal" people do. Whenever we are highly stressed, the blood brain barrier allows toxins to penetrate into the blood vessels in the brain. I'm no rockiet scientist, but this is merely my own deduction from all the research that I have done and medical articles that I have read in the last couple of months.
Lisa (iamrite) said:
Interesting theory. Did you see that video someone posted about being close to a cure? Dr. Alan is messing with injecting new cells to correct the signals that our own cells send.... in mice, the cells reproduce, and the problems with TN are gone. So in some ways, what you say supports his research..... It would be interesting to know what percentage of people were in very high stress positions in their lives (work, school, family) when first developed. I can tell you that for the 3 years prior to being diagnosed were the most stressful in my life.
Lisa - I would also say that I was in about 10 years of high stress before this happened. BUT - I have been a high stress person all my life. I had panic anxiety at age 2 - age 2 for gods sake! There was no psychological trauma in my life. I just experienced stressful events at a much higher level than my peers. I had an ulcer in 2nd grade. Again, no explanation for this. My sisters didn't have an ulcer in their younger lives. Being born with Low GABA inhibitors seems like the only explanation. I was also exposed to a high level of toxins in the 80's. My theory is that those toxins got past the BBB, and my blood vessels hiccupped at that time. I didn't feel any TN pain until that vessel had "rubbed" off the myolin layer, exposing the nerve end and accelerating the nerve impulse for pain. I know I need to get a life and quit obcessing over this. (Why don't they have spell check on this site for those of us on drugs?)
I guess I am confused, which is very possible. But I thought the new therapy does mutate the gene itself and how the Gaba inhibitors work?
Lisa - gosh, I hope you are correct!! If the new therapy does change the cells to not only regenerate them, but to add back the normal production of GABA inhibitors, that would be fantastic. I would be the first in line for it!!! I thought for sure "Red" would be saying something in here about all this - either totally disputing my theory or showing me where my rationalization was invalid. If I am ever off the meds, I am going to reread all this and see if I sounded sane or not.
I am pretty sure that doctor said that it changes the cells and that they regenerate them adding the gaba inhibitors. He explained the firing mechanisms of the nerve. Then he said part of the problem with the meds like gabapentin and Tegretol is that they are ingested but they don't know exactly where to go to fix the problem so they effect the whole nervous system. He said this new therapy (I thought at one point he said transplant, but I was not sure I heard right) is targeted right at the cells of the gaba inhibitors in the nerve to stop the misfiring. He said the most dangerous part is that you don't want to lose all feeling because we need to feel pain for safety reasons. But the early data is suggesting that the cells do what they are supposed to. Pretty sure that is what he said.
I do have to say I am alot like you. I had my first ulcer in my stomach from anxiety at the age of 12. Suffered on and off from ulcers all my life. Then I had some anxiety issues throughout my 20's. In my late 20's I had my first anxiety attack -- thought I was dying of a heart attack. Those increased in frequency and strength... then this latest thing.... is there a corelation, I have no idea. Not sure. Doctors say no. I do believe that my ability to deal with stress does make this condition worse......
I was gonna say...OHHH just lucky I guessss.
ME too Lisa!!!
It was only 2 years but still..
Lisa (iamrite) said:
Interesting theory. Did you see that video someone posted about being close to a cure? Dr. Alan is messing with injecting new cells to correct the signals that our own cells send.... in mice, the cells reproduce, and the problems with TN are gone. So in some ways, what you say supports his research..... It would be interesting to know what percentage of people were in very high stress positions in their lives (work, school, family) when first developed. I can tell you that for the 3 years prior to being diagnosed were the most stressful in my life.
I'll bet all of us had numerous years of stress which may have contributed in some way to this disorder. I kept thinking that this made TN a psychological disorder, but when I found an artical on a theory (or some testing result) that said neuropathic pain like ours was prevalent in people who had genetic low rates of GABA inhibitors, I felt it explained alot to me. Basically, I realized I am not a neurotic, post menopausal woman with an anxiety disorder. And the next time a doctor asks me: "Why are you taking Xanax?", I can answer that it is one of the best GABA inhibitors for treating what may be a genetic predisposition to low level GABA neurotransmitter development in my brain. I have had 2 doctors act like I was just a druggie because I was taking Xanax. They did not ask me nicely why I was on Xanax and it sure made me feel defensive when I replied to them.
Like others here, I have always lived a highly stressed life. I have aspergers, and with aspergers comes high levels of anxiety. I was seeing a psychiatrist at the age of 5, and she tried to diagnose me as a manic depressive who is mainly manic because I had such huge mood swings.
During my degree, I was also part of Te university student union committee so I was doing 80 hours plus on that alone, as well as my degree. Now I’m training to be a teacher at the same time as doing the preproduction for a feature film. But I thrive on that sort if stress, so I never really thought that could be part of it.
Before my teacher training, I was in a job where my manager was a bully, so that may have had an effect.
I have a theory too, but it's strictly my opinion ONLY. I have TN and systemic lupus (and a few others). Being that lupus is all about INFLAMMATION and I have other blood vessel problems like vasculitis and vascular lesions from extreme photosensitivity, couldn't inflammation cause the blood vessels to push on the trigeminal nerve? It might not show up in an MRI that way since it isn't always pushing and causing TN. ALSO, I've had Bells Palsy twice. Either I've got Shingles gone crazy out of whack or the inflammation in the brain stem is causing a number of problems.
I've had worsening peripheral neuropathy and I do believe that contributes or is part of the entire process somehow. I'm going to see a neurosurgeon at Barrows since my present neuro is well..not the brightest bulb in the bunch. I've had bouts of BURNING MOUTH syndrome that was NOT related to any mineral or vitamin deficiencies. Once again...inflammation in the facial nerves? YES? NO?
Jujubeee I developed Temporal Arteritis which is inflammation of the arteries and TN within 4 weeks of each other. My neruo thinks the inflammation of the TA triggered the classic TN. I guess he agrees with you. He is hoping as the inflammation of the TA gets dealt with I may not suffer another Classic TN attack. I do now have ATN and think I may be left with this? I am on a steroid reduction plan for the TA and I am praying the ATN does not worsen as I reduce.
After a year of research - I can assure myself and the world
That it was an oral surgeon -- not the tooth itself that was pulled
I was knocked out on Propofol== my last wisdom tooth on LEFT side had to be dug out
4 hours later I was in the ER - with a tazer in my cheek On the RIGHT Side ---- ER narcotic barely touched it
I know this now because many, many are diagnosed with TN after whiplash ----brainstem/veins/nerves included----- that man ruthlessly jerked my neck around while I was unconcious --- the assistant wiped the excess blood off my arm, had a horrid look on her face and scooted me the hell out of that office ASAP.
Another local lady tried to sue him for TN - had a specialty dental lawyer - and the oral surgeon won the case = by "proving " she was psychologically impaired --- can't touch him - but I can warn others not to use him.! Some STILL think this is a mental illness and it kills me to think about that!
I think mine was through a catalogue of events. Unknown to me I had Temporal Arteritis, (Inflammed Arteries in the head) I then had laser treatment to my top lip. The laser is a powerful force of energy which blasts the spider vein so it is no longer visible. I think I may have escaped TN if I had just the TA only, or if i had the laser only, but combined meant my nerve was effected. I could be wrong at this could be a conscience but I think not.
This is such an intersting conversation! - it is so hard to put reason to such an awful disease...yep, had some trauma over 20 years ago - yep, have had LOADS of stress over the past few years that has been at times 'too much' to bear - yep, have had Bell's Palsy and also Shingles with in 1 year of each other about 12 years ago...who knows! We could probably all put up a laundry list of incidents that could be the cause, but at the end of the day, we are all guessing. Our bodies are so very complex, and the nervous system is RIDICULOUS when it comes to more questions than answers! You all have such great info...I appreciate you sharing what you have researched and learned!!