Doctors don't know much about trigeminal neuralgia because the disorder is relatively rare. In any given year, the estimated number of new cases is about 12 to 21 patients per hundred thousand population. Medical school training for general practitioners is also inadequate for ALL neurological disorders and for most forms of pain management. Patient advocate groups have been lobbying for decades to improve on medical school training. But there has been no financial or legal incentive for medical school faculties to pay attention. Until several hospitals are successfully sued and serious numbers of doctors barred from practice for failure to provide appropriate pain treatment, I rather suspect this condition will continue.
That's a great point, law suits and legal incentive, that's a route we can and should follow. Why haven't we thought of that!! Thank you
Richard A. "Red" Lawhern said:
Doctors don't know much about trigeminal neuralgia because the disorder is relatively rare. In any given year, the estimated number of new cases is about 12 to 21 patients per hundred thousand population. Medical school training for general practitioners is also inadequate for ALL neurological disorders and for most forms of pain management. Patient advocate groups have been lobbying for decades to improve on medical school training. But there has been no financial or legal incentive for medical school faculties to pay attention. Until several hospitals are successfully sued and serious numbers of doctors barred from practice for failure to provide appropriate pain treatment, I rather suspect this condition will continue.
Good points Red, and because medical schools are funded by big pharmaceutical companies, the curriculum teaches mostly about conditions that can be treated with expensive medicine. There are not many new expensive prescriptions for this, so not much time is spent on it. Their teaching of pain control and the difference between addiction and dependence equals ONE DAY!! Any Dr. who wants to know more, or even understands that there IS more to know, has to study it himself.
I have Neurofibromatosis though I am unsure of the type, but researching it, I see that Type II has been known to have facial pain as a marker. I don't ever recall having seizures, though epilepsy is common. I was 15 when I had a 'tumor' removed from my head and it's possible that's when all my problems started. I don't know when or how I first starting having the pain but it was years before I started putting the puzzle pieces together.
My former Dr. and current Dr. are APRNs, and my former one was the one who diagnosed me with the TN. I told her about the pains I had and the... places I would get in my mouth (like.. cysts or something but they were not noticibly painful.) I told her I had looked up on WebMD symptom tracker, but used the words, burning, stinging, stabbing, sharp.. there are not enough words to describe the pain. and she locked RIGHT on to, no that doesn't sound like TN that IS undeniably TN.
Richard A. "Red" Lawhern said:
Doctors don't know much about trigeminal neuralgia because the disorder is relatively rare. In any given year, the estimated number of new cases is about 12 to 21 patients per hundred thousand population. Medical school training for general practitioners is also inadequate for ALL neurological disorders and for most forms of pain management. Patient advocate groups have been lobbying for decades to improve on medical school training. But there has been no financial or legal incentive for medical school faculties to pay attention. Until several hospitals are successfully sued and serious numbers of doctors barred from practice for failure to provide appropriate pain treatment, I rather suspect this condition will continue.
I was laying in bed last night wondering the same thing. I came on here today with the intention of seeing if we all maybe haver something in common that no one has ever noticed, as it could be something that seems to be irrelevant. These are things I have had that could be a factor.
repeated Tonsillitis until having them out at 35.
Glandular fever at 13.
Carrier of Epstine barr.
I worked as a massage therapist for 10 years. So have had neck and arm muscle problems.
I'm allergic to wheat and penicillin .
I have an intolerance to Alcohol.
Maybe none of those have any relevance , but maybe it would be good as a group to try and find if we do have a common denominator . No one else is going to do it for us! xx
I am new here and will go introduce myself after but I wanted to respond here first.
I don't have a diagnosis yet but I think it may be TN type 2. I always look for underlying causes when something is going on for me. I have been asking myself this a lot lately. I am also allergic to wheat and alcohol intolerant, wine especially. I have had migraines all my life and also worked at hard physical jobs a lot.
We think I may also have Celiac Disease (auto immun) but can't be tested because I am gluten free.
I have been suspecting high Histamine foods are a trigger and I did come across an article about a study of histamines triggering TN.
Interesting, I saw on facebook this morning someone asking if anyone else with TN had a wheat allergy.
Welcome Charlie, this site is great full of helpful people . xx
charlie said:
I am new here and will go introduce myself after but I wanted to respond here first.
I don't have a diagnosis yet but I think it may be TN type 2. I always look for underlying causes when something is going on for me. I have been asking myself this a lot lately. I am also allergic to wheat and alcohol intolerant, wine especially. I have had migraines all my life and also worked at hard physical jobs a lot.
We think I may also have Celiac Disease (auto immun) but can't be tested because I am gluten free.
I have been suspecting high Histamine foods are a trigger and I did come across an article about a study of histamines triggering TN.
Thanks for the welcome! The worst pain attack I had was about a year ago when I ingested wheat accidentally, a 10 on my pain scale, jumping legs, vomiting and passing out. I ended up in the emergency room.
Debra said:
Interesting, I saw on facebook this morning someone asking if anyone else with TN had a wheat allergy.
Welcome Charlie, this site is great full of helpful people . xx
charlie said:
I am new here and will go introduce myself after but I wanted to respond here first.
I don't have a diagnosis yet but I think it may be TN type 2. I always look for underlying causes when something is going on for me. I have been asking myself this a lot lately. I am also allergic to wheat and alcohol intolerant, wine especially. I have had migraines all my life and also worked at hard physical jobs a lot.
We think I may also have Celiac Disease (auto immun) but can't be tested because I am gluten free.
I have been suspecting high Histamine foods are a trigger and I did come across an article about a study of histamines triggering TN.
I'd never connected the two things at all. Maybe there is something in it.
charlie said:
Thanks for the welcome! The worst pain attack I had was about a year ago when I ingested wheat accidentally, a 10 on my pain scale, jumping legs, vomiting and passing out. I ended up in the emergency room.
Debra said:
Interesting, I saw on facebook this morning someone asking if anyone else with TN had a wheat allergy.
Welcome Charlie, this site is great full of helpful people . xx
charlie said:
I am new here and will go introduce myself after but I wanted to respond here first.
I don't have a diagnosis yet but I think it may be TN type 2. I always look for underlying causes when something is going on for me. I have been asking myself this a lot lately. I am also allergic to wheat and alcohol intolerant, wine especially. I have had migraines all my life and also worked at hard physical jobs a lot.
We think I may also have Celiac Disease (auto immun) but can't be tested because I am gluten free.
I have been suspecting high Histamine foods are a trigger and I did come across an article about a study of histamines triggering TN.
Funny this discussion popped back up. I had an MVD in October for TN and ATN, it was 90% successful, and I have some ear pain left that is managed with anti-depressants. Since then a whole world of crap has started to happen as follows.
I developed carpal tunnel in both hands litterally overnight, I now need surgery for my left hand
My legs constantly ache and at night I cant sleep its so bad.
My eyesight keeps getting worse and now my right eyeball feels like its getting ripped out of my head.
My neurologist believes that something else is going on, but all tests come back normal.
I feel like crap all the time now and the TN pain has started coming back a little bit
I am scared to death right now that I will continue to get worse and the TN will come back full force and that we wont find out whats going on, but the neurologist did say something caused my Tn, its just what?
Crash, I think you need to be evaluated for Lupus and Fibromyalgia. There's nothing that says you can't have them at the same time as your TN. Likewise, the pain in your eye can be a recurrence of TN.
For others: while I realize it may seem odd that TN pain responds to medications given for epilepsy, nobody claims that the two are related. It just happens that the anti-seizure meds slow down the nervous system in ways that often dampen or mute the avalanche of nerve firing which causes spikes of TN pain in response to very light stimulus on the face.
Sorry I can't bring you better news. But this disorder is what it is.
Red, thanks for the suggestion, I did have both tests as well as a ton of others and all came back negative, they even tested for lyme and Malaria ( no idea there) I do think the eye pain may be a new wrinkle with the TN, but being I just had an MVD I am not really ready to accept that yet, plus there is so much more going on.
Crash, when I have flares, there are times i have pain in the back of my eye, in my nose, even in my ears. Today, which now is now day 6 of flares this week, I've had shocks and popping in my jaw(opposite to the side that's having issues). I was at Walgreens and did speak with a pharmacist who did agree that using infant Tylenol topically to the inside of the cheek is a good idea and suggested to do that and take alive when the pain is.. out.of control.
Someone had asked me what TN was like, and the best way I could describe it is having fibromyalgia in your face.
Debra i'm also allergic to wheat and alcohol because of the yeast.
Debra said:
I was laying in bed last night wondering the same thing. I came on here today with the intention of seeing if we all maybe haver something in common that no one has ever noticed, as it could be something that seems to be irrelevant. These are things I have had that could be a factor.
repeated Tonsillitis until having them out at 35.
Glandular fever at 13.
Carrier of Epstine barr.
I worked as a massage therapist for 10 years. So have had neck and arm muscle problems.
I'm allergic to wheat and penicillin .
I have an intolerance to Alcohol.
Maybe none of those have any relevance , but maybe it would be good as a group to try and find if we do have a common denominator . No one else is going to do it for us! xx
My naturopathic doctor prescribed PERCURA, a medical food, that is FDA approved and has been known to help with Trigeminal Neuralga. My doctor also said it was safe to take with Neurontin. I can only be on half the dose of Neurontin that most people can have (900 mg a day) because my kidneys process it too slowly.
I was just wondering if anybody else has heard of PERCURA for Trigeminal Neuralgia? It is known as a medical food that helps to put the amino acids back in the body, that people with peripheral neuropathy might be lacking. It is pretty safe and doesn't have the usual side effects of Anti-seizure drugs.
Again, let me know if you have ever heard of PERCURA. It is by prescription only but is a natural medical food.
My reply to the person that says Trigeminal Neuralgia is like Fibromyalgia in the face. I say it is like being electrocuted in the face. Does Fibromyalgia feel like you are being electrocuted in the areas you have it?
Debra i'm also allergic to wheat and alcohol because of the yeast.
Debra said:
I was laying in bed last night wondering the same thing. I came on here today with the intention of seeing if we all maybe haver something in common that no one has ever noticed, as it could be something that seems to be irrelevant. These are things I have had that could be a factor.
repeated Tonsillitis until having them out at 35.
Glandular fever at 13.
Carrier of Epstine barr.
I worked as a massage therapist for 10 years. So have had neck and arm muscle problems.
I'm allergic to wheat and penicillin .
I have an intolerance to Alcohol.
Maybe none of those have any relevance , but maybe it would be good as a group to try and find if we do have a common denominator . No one else is going to do it for us! xx
I have a gluten problem too, and also Trigeminal Neuralgia. I also came down with TN about 5 months, after I healed from Drug induced Lupus. It was wierd, and very rare, and only suspected that Osteo-Biflex caused me to have it. I haven't had LUPUS since, but boy did it leave a bad disease in me afterwards (TN)
I don't know if having a gluten allergy or problem is related to TN or not. But having a gluten problem is related to having auto-immune diseases, that is for sure. I have a number of them that are controlled if I stay away from gluten.
Crash, I think you need to be evaluated for Lupus and Fibromyalgia. There's nothing that says you can't have them at the same time as your TN. Likewise, the pain in your eye can be a recurrence of TN.
For others: while I realize it may seem odd that TN pain responds to medications given for epilepsy, nobody claims that the two are related. It just happens that the anti-seizure meds slow down the nervous system in ways that often dampen or mute the avalanche of nerve firing which causes spikes of TN pain in response to very light stimulus on the face.
Sorry I can't bring you better news. But this disorder is what it is.