Open Letter to Doctors about Facial Pain Disorders
Dear Doctors!
We know that trigeminal neuralgia (TN) is considered to be one of the most painful afflictions known to medical practice.
We are even at odds to call it a disease, disorder and/or condition but what we do know it’s rare and between 4 to 8 million people live with it.
We are even at odds to call it a disease, disorder and/or condition but what we do know it’s rare and between 4 to 8 million people live with it.
Do we scare you? Are you scared about your limit of knowledge regarding Trigeminal Neuralgia (TN) and other Facial Pain Disorders.?
We have a chronic unsolvable rare disorder that stands in your way and most of you are frustrated that you can’t fix us.
Don’t be mad with us because it shows your limits of knowledge of this rare condition.
We have a chronic unsolvable rare disorder that stands in your way and most of you are frustrated that you can’t fix us.
Don’t be mad with us because it shows your limits of knowledge of this rare condition.
We’ve accepted that you and I have no power over this condition.
You can let go and give up on us but we have to continue to fight the illusion of us having control of our pain.
You just move on to the next easy patient that you can save but we have to continue to fight until the next Doctor gives up.
Every new visit to a Doctor just shows us how we know more about our rare condition than the medical community.
You can let go and give up on us but we have to continue to fight the illusion of us having control of our pain.
You just move on to the next easy patient that you can save but we have to continue to fight until the next Doctor gives up.
Every new visit to a Doctor just shows us how we know more about our rare condition than the medical community.
We are seeing more and more Doctors that don’t encounter or try to avoid the understanding of Trigeminal Neuralgia and Facial Pain Disorders.
Even Doctors who do specialize with our rare condition don’t have the knowledge as we because we’re the ones that live with it day to day.
We have the deep understanding that no Doctor can possess and we’re here to give you that knowledge that can benefit us, you and others.
We also come to accept that some Doctors are not able to deal with chronic rare conditions as ours, but you took an oath to do us no harm.
Even Doctors who do specialize with our rare condition don’t have the knowledge as we because we’re the ones that live with it day to day.
We have the deep understanding that no Doctor can possess and we’re here to give you that knowledge that can benefit us, you and others.
We also come to accept that some Doctors are not able to deal with chronic rare conditions as ours, but you took an oath to do us no harm.
So the next time you think about giving up on us just think if this was one of your family members?
What would you do? Would you be scared?
What would you do? Would you be scared?
To our TN Brothers and Sisters, Family, Friends and Community: Below are suggestions, comments and ideas from those of us that live with Trigeminal Neuralgia and Facial Pain Disorders, if you’re reading this letter could you please share, post or email this Open Letter to Doctors so our voices can be heard across the medical community.
Jane Harris Kelley: Explain long term use of the medications prescribing. Better yet, know the long-term effects of said drugs. Make sure your patient has given proper drug list for drug interactions.
Susan Wiffill: Just makes me very curious to know, why the research is not being done. They know this condition exists. So why don’t drug companies work with medical research to get results, to help people. And stop suffering, and ruining lives.
Susan Wiffill: Just makes me very curious to know, why the research is not being done. They know this condition exists. So why don’t drug companies work with medical research to get results, to help people. And stop suffering, and ruining lives.
John Speece: Opioid pain meds are addictive, BUT, if there is no cure, then pain meds are the only relief from pain. If the TN'r can't live without pain meds, because of the pain, what does addiction matter? They can't live without the meds, addicted or not! Until there is a real cure, the pain meds allow them to actually have a life, instead of just being alive & in unbearable pain. Those that think EXERCISE therapy, and meditation will work have not ever lived with TN. When Dawn Raye Winner had her pain meds, we had a life, they stopped them & she spent all her time writhing in pain in bed. She had MVD surgery, didn't work, she had Gamma Knife treatment, didn't work. Pain meds allowed her to function as a normal human being. I miss that & I will miss her forever.
Lori Bowen: Don't give up on us try everything you have what we have heard of just try and don't think withholding ANY meds is better for us you leave us in unbearable pain that is why it's called the "suicide disease"
Tracy Magann: I hate when I'm in the ER & The nurses & staff are talking to me during an acute attack. Let me write it on paper or accept the statements made by the person bringing me if I can sign language acceptance to statements. I needed to add that I choose to speak as little as possible during a bad attack because it could bring more strikes/shocks. Getting someone like us out of the pain we are in is key so we go home. Educated staff in ER about invisible illnesses & the importance of understanding the patients pain. Don't further stress them by calling it the flu, etc.
June Toland: Listen to what we are saying and look it up. Many of us spend more hours doing research on TN then some do seeing patients. Do not blow us off as being less educated then you. We maybe in many areas and then again you might learn from us by listening and checking out our research. I have given doctors info to read even from the Facial Pain Association and they would not. I got told they are the doctor and I'm the patient I do what they say. No most doctors are nowhere near as educated on TN as I am. I've spent more hours of study on it then they ever will. Especially ER doctors. And I have had an ER doctor who has never heard of TN.
Cheri Williams: Help pain management so we are somewhat comfortable.
Karen Witt: I am atypical- I go through several years of pain, sometimes the phase is quite bad, others manageable- then several years of nothing. I started with a jolt of severe pain so bad that I could not swallow or talk-my husband was traveling so I instant messaged a friend to call my husband to come home- I could not talk- One 2 yr episode was so bad that I could not stay alone while he was out of town- the first episode I was sent to a TMJ guy and that made things worse- horrible- no relief-one neurologist said I would just have to learn to live with it- the last episode was easily handled with a small dose of Tegretol- one of the episodes was not controlled with 1400 mg Tegretol. Several doctors in Chattanooga did not want to deal with it-so I went to Atlanta- Now I have a neurologist who has been very supportive and no problems- had no episodes! Go figure.
Kelly Case Ornelas: Please don't say "There's nothing wrong with you!" And recommend a psychiatrist.
Kristen Case: I would just like to see it emphasized that there is a great variety in how TN presents itself in individuals. So with most symptoms, it should be said that "some" or "most" TN patients experience this etc. Not everyone has triggers, not everyone feels it the same way. It can be different in different people and still be TN.
Shelley Duncan Jay: We are NOT drug seekers and just need Dr’s to be compassionate. We all present and respond differently. I have been told to never return to the ER presenting with TN pain because they are not there to treat chronic pain and the pain clinic says they have nothing more for me.... So I have been left to suffer alone
Eric Julie Aguilar: My friend was given morphine @ an ER for her TN attack & it didn't work. It terrifies me that she couldn't get relief this was before her MVD surgery. These doctors for example HOAG hospital ER docs don't know how to treat a TN patient that had gamma knife radiation surgery in their own hospital. I kept telling them that my forehead swelled (like a hive of bumble bees attacked me) to give me steroids just like the internet said. The gamma knife doctor & his on call doctor never returned the ER docs call over Thanksgiving weekend. It's so crucial that they know how to help TN patients at all phases of their journey.
Wendy Barbieri: I have 2 main gripes. When going to an ER for pain control, if a person has already been dx with TN and had medical records on hand to prove the dx....DO NOT touch there face for your own validation. I've had this happen several times while in midst of level 8 flare even after having shown them 2 MVD operative reports and STILL they doubt me. I had to tell one extremely prejudiced ER doc that if she touched my face again with her cold hands I would punch her. She didn't touch me again. The fact that I had to resort to ugliness before I could get through to her was ridiculous! Secondly, bilateral, classic TN may be the rare of the rare, BUT it DOES exist AND in people under the age of 50.
Mary-Ann Perkins: To all the doctors .... "Please, believe me, this pain is real! I'm not pretending, why would I? And I'm not attention seeking either, why would I do that?"
Barbara Albright Brumagin: I was misdiagnosed and mistreated for five years. I have type 2 so I realize it's hard to diagnose but if they would only ask GOOD questions and think outside the box, I've had unnecessary sinus surgery, dental surgery and was treated for migraine 3 years - just because they stopped thinking. I didn't know what questions to ask. When I told my neurologist that it felt like nerve pain he should have had a clue! I Googled "facial nerve pain" and diagnosed myself! I went to a pain management doctor/anesthesiologist and he has been able to manage the pain so I have a life now.
Kathy Magliaro: Nerve pain in general is the most difficult type of pain to treat. Neuralgia & Neuropathy nerve pain is definitely the most difficult because no known source typically. It is nerves misfiring for an unknown reason.
With this being said - most chronic pain sufferers are suffering from some type of nerve pain and yet NEVER EVER in the entire history of all pharmaceutical technology has anyone ever developed a drug ONE DRUG as its first mode to treat nerve pain. It has never and currently doesn't exist.
Jeannette Karina Guzman: I think doctors and ER should have an urgent attention to us - as far as the pain level we come in the ER with. And this diagnosed patience should be added to be flagged in a medical data base in some way so that when we show up dying.... literally dying of pain - we have an instant bump. Up in line - no waiting with the folks with a cold in the waiting room. Details of our meds, so that you don't really diagnose us and them. Not believe what we say we have. I for one know I need morphine to help me when I'm out of control - my records prove that it's what I take in an emergency.... STOP RE DIAGNOSING me, to them not believe my pain level or what I DO HAVE - I’m dying here!!!!
Rebecca D Thorpe: Just listen to us, they have access to our medical records they can see Trigeminal Neuralgia, cluster headaches etc. on our medical records. We live with this 24/7 and will usually know what will and what won't work so we are making their jobs really easy if they would just listen... Continue your education on Trigeminal Neuralgia and honor the oath you took when you became a doctor. Stop punishing all chronic pain people for the behavior of some drug addicts. Don't be offended when we know more about our disease than you do and how to treat it.
Kimberly Marin: I would say listen to the patient. Nerve pain is an another ballgame altogether. Don’t discount what they are saying just because they may look fine. There is a war going on inside. Feeling anywhere from bee stings to acid burning, with stabbing and lightening in between. please just listen.
Howard Techau: I would suggest that they attend education classes once a year covering all chronic pain. These classes could show how to handle patients with more compassion and know what to look for in diagnosing pain. Also tell them not to be afraid of trying different meds including opiates.
Joan Campbell Triplett: I would like for them to educate themselves if they are going to treat us, and take time to really listen to us. To get to know us so they know our individual needs because this is not a cookie cutter disease.
Rachel Principato Goodman: They always say I'm having a headache; they refer me to headache specialists. It's so sad that they don't listen to us when we already know our diagnosis, think about the people who don't know they have TN yet. This mis- information just slows down the process of finally getting a proper diagnosis!
Tracy Magann: I hate when I'm in the ER & The nurses & staff are talking to me during an acute attack. Let me write it on paper or accept the statements made by the person bringing me if I can sign language acceptance to statements. I needed to add that I choose to speak as little as possible during a bad attack because it could bring more strikes/shocks. Getting someone like us out of the pain we are in is key so we go home. Educated staff in ER about invisible illnesses & the importance of understanding the patients pain. Don't further stress them by calling it the flu, etc.
June Toland: Listen to what we are saying and look it up. Many of us spend more hours doing research on TN then some do seeing patients. Do not blow us off as being less educated then you. We maybe in many areas and then again you might learn from us by listening and checking out our research. I have given doctors info to read even from the Facial Pain Association and they would not. I got told they are the doctor and I'm the patient I do what they say. No most doctors are nowhere near as educated on TN as I am. I've spent more hours of study on it then they ever will. Especially ER doctors. And I have had an ER doctor who has never heard of TN.
Cheri Williams: Help pain management so we are somewhat comfortable.
Karen Witt: I am atypical- I go through several years of pain, sometimes the phase is quite bad, others manageable- then several years of nothing. I started with a jolt of severe pain so bad that I could not swallow or talk-my husband was traveling so I instant messaged a friend to call my husband to come home- I could not talk- One 2 yr episode was so bad that I could not stay alone while he was out of town- the first episode I was sent to a TMJ guy and that made things worse- horrible- no relief-one neurologist said I would just have to learn to live with it- the last episode was easily handled with a small dose of Tegretol- one of the episodes was not controlled with 1400 mg Tegretol. Several doctors in Chattanooga did not want to deal with it-so I went to Atlanta- Now I have a neurologist who has been very supportive and no problems- had no episodes! Go figure.
Kelly Case Ornelas: Please don't say "There's nothing wrong with you!" And recommend a psychiatrist.
Kristen Case: I would just like to see it emphasized that there is a great variety in how TN presents itself in individuals. So with most symptoms, it should be said that "some" or "most" TN patients experience this etc. Not everyone has triggers, not everyone feels it the same way. It can be different in different people and still be TN.
Shelley Duncan Jay: We are NOT drug seekers and just need Dr’s to be compassionate. We all present and respond differently. I have been told to never return to the ER presenting with TN pain because they are not there to treat chronic pain and the pain clinic says they have nothing more for me.... So I have been left to suffer alone
Eric Julie Aguilar: My friend was given morphine @ an ER for her TN attack & it didn't work. It terrifies me that she couldn't get relief this was before her MVD surgery. These doctors for example HOAG hospital ER docs don't know how to treat a TN patient that had gamma knife radiation surgery in their own hospital. I kept telling them that my forehead swelled (like a hive of bumble bees attacked me) to give me steroids just like the internet said. The gamma knife doctor & his on call doctor never returned the ER docs call over Thanksgiving weekend. It's so crucial that they know how to help TN patients at all phases of their journey.
Wendy Barbieri: I have 2 main gripes. When going to an ER for pain control, if a person has already been dx with TN and had medical records on hand to prove the dx....DO NOT touch there face for your own validation. I've had this happen several times while in midst of level 8 flare even after having shown them 2 MVD operative reports and STILL they doubt me. I had to tell one extremely prejudiced ER doc that if she touched my face again with her cold hands I would punch her. She didn't touch me again. The fact that I had to resort to ugliness before I could get through to her was ridiculous! Secondly, bilateral, classic TN may be the rare of the rare, BUT it DOES exist AND in people under the age of 50.
Mary-Ann Perkins: To all the doctors .... "Please, believe me, this pain is real! I'm not pretending, why would I? And I'm not attention seeking either, why would I do that?"
Barbara Albright Brumagin: I was misdiagnosed and mistreated for five years. I have type 2 so I realize it's hard to diagnose but if they would only ask GOOD questions and think outside the box, I've had unnecessary sinus surgery, dental surgery and was treated for migraine 3 years - just because they stopped thinking. I didn't know what questions to ask. When I told my neurologist that it felt like nerve pain he should have had a clue! I Googled "facial nerve pain" and diagnosed myself! I went to a pain management doctor/anesthesiologist and he has been able to manage the pain so I have a life now.
Kathy Magliaro: Nerve pain in general is the most difficult type of pain to treat. Neuralgia & Neuropathy nerve pain is definitely the most difficult because no known source typically. It is nerves misfiring for an unknown reason.
With this being said - most chronic pain sufferers are suffering from some type of nerve pain and yet NEVER EVER in the entire history of all pharmaceutical technology has anyone ever developed a drug ONE DRUG as its first mode to treat nerve pain. It has never and currently doesn't exist.
Jeannette Karina Guzman: I think doctors and ER should have an urgent attention to us - as far as the pain level we come in the ER with. And this diagnosed patience should be added to be flagged in a medical data base in some way so that when we show up dying.... literally dying of pain - we have an instant bump. Up in line - no waiting with the folks with a cold in the waiting room. Details of our meds, so that you don't really diagnose us and them. Not believe what we say we have. I for one know I need morphine to help me when I'm out of control - my records prove that it's what I take in an emergency.... STOP RE DIAGNOSING me, to them not believe my pain level or what I DO HAVE - I’m dying here!!!!
Rebecca D Thorpe: Just listen to us, they have access to our medical records they can see Trigeminal Neuralgia, cluster headaches etc. on our medical records. We live with this 24/7 and will usually know what will and what won't work so we are making their jobs really easy if they would just listen... Continue your education on Trigeminal Neuralgia and honor the oath you took when you became a doctor. Stop punishing all chronic pain people for the behavior of some drug addicts. Don't be offended when we know more about our disease than you do and how to treat it.
Kimberly Marin: I would say listen to the patient. Nerve pain is an another ballgame altogether. Don’t discount what they are saying just because they may look fine. There is a war going on inside. Feeling anywhere from bee stings to acid burning, with stabbing and lightening in between. please just listen.
Howard Techau: I would suggest that they attend education classes once a year covering all chronic pain. These classes could show how to handle patients with more compassion and know what to look for in diagnosing pain. Also tell them not to be afraid of trying different meds including opiates.
Joan Campbell Triplett: I would like for them to educate themselves if they are going to treat us, and take time to really listen to us. To get to know us so they know our individual needs because this is not a cookie cutter disease.
Rachel Principato Goodman: They always say I'm having a headache; they refer me to headache specialists. It's so sad that they don't listen to us when we already know our diagnosis, think about the people who don't know they have TN yet. This mis- information just slows down the process of finally getting a proper diagnosis!
All information contained on TNnME web site is for informational purposes only and at no time should any content on TNNME be considered medical or legal advice or imply any action should be taken. It is in no way intended to be used as a replacement for professional medical treatment. TNnME makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to and from this site. All information taken from the internet should be discussed with a medical professional!