An Open Letter to Emergency Room Doctors
Dear ER Doctors
(Please post this in your common area)
Many people are still suffering with Trigeminal Neuralgia (TN) and Facial Pains that are not treatable or controlled well. They will not arrive in the ER unless in severe duress, the treatment you provide will in some cases mean the difference between life and death. The pain is that severe, and the disease was formerly known as tic douloureux.
By the time a TN patient arrives in the ER, they may not be able to communicate; planning ahead, most will arrive with medical records (either paper or electronic), others will have a support person with them to communicate as their proxy. Many TN patients are unable to brush their teeth properly and have problematic oral hygiene, yet most will be very educated on TN and their medicines. Many use long acting or rescue opiates as well as anti-epileptic or anti-depressant medications used with neuropathies or as mood stabilizers. All of the above can make them look like people too familiar with the medical process and potential drug-seekers.
We recognize this as a legitimate concern and hope this notice preparing you for how a TN patient might appear in the ER will help you sort them out. They have had to become informed on Trigeminal Neuralgia as many of them waited years for a diagnosis and some found information on relief through national support groups such as Trigeminal Neuralgia Association and TNNME. We are suggesting to TN patients that they bring protocols from their neurologists or regular physicians to the ER, should they have need of your services, yet this may not always be possible. Your on-call neurologist should be able to assist with information and care.
The reasons a TN patient usually comes to the ER are either:
• The pain has intensified and needs to be addressed beyond the current protocol or
• There are side effects to the medications that need to be addressed.
Other issues are usually dealt with by the patient’s regular doctor and not in the emergency setting.
What TN Sufferers and Care givers are saying about better care in the ER:
By Janet McGee_ "I would want to say that Emily received two certificates from Northern Virginia Community College: National Security, and Criminal Forensics. For one of her forensics classes, Emily wrote an 11-page research paper about the operation of meth labs and the manufacture of methamphetamines. Emily groused that her professor neglected to ask her permission to disseminate her paper, but it is now required reading for all DEA agents in the country. She was also a founding member of the Young Patients Committee of the National Facial Pain Association. For one magical week, until Emily was formally diagnosed with TN, she was the FBI's first choice for an all-expense-paid ride through AMU and the FBI Academy. For all that Emily cared to see the end of meth abuse, for all the nights she spent writing responses to young patients' e-mails, she received nothing in return, save the disregard of numerous ER doctors and nurses. Emily had trigeminal neuropathy and occipital neuralgia. The rapidity of the progression of TN, when caused by nerve damage from facial surgery, is staggering in its ability to frighten both the patient and her mother. I want doctors to know that TN patients are not drug seekers but treatment seekers. TN is not just painful, it is progressive and disabling. It is a thief of dreams. Until we have a cure, we will need effective treatments. TN requires but does not get effective management. While the Facial Pain Research Foundation works on a cure, those who combat facial pain every day need relief. Patients need management that will allow them to live with dignity and with their dreams intact. And moms who have been studying neuroscience for 20+ years need not be treated like morons when they accompany their pain-ridden children to the ER for treatment. Not judgment, not fatality-inducing drugs, but treatment."
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 interaction.
John Speece Opioid pain meds are addictive, BUT, if there is no cure, then pain meds are the only relief from pain. If the TNers 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.
Alma Browne I would say ALL medics when presented with a patient with TN. should be well versed and educated on this condition, I would also state that anything that causes you such horrendous debilitating pain, should absolutely be treated with the same urgency as any other health condition, (which It presently Is not) I would tell a doctor It Is a basic human right that nobody should have to suffer such horrendous pain every single day, this Is just unacceptable In this day and age, with such advancements In medical science, It's about time all chronic pain was treated equally as a disease In It's own right, this Is not to the doctors, but moving forward we also need the World Health Organization to list It, and validate TN. and all chronic pain, which Is a huge deal, only then, will we see much faster progress being made, this Is vital.
Karen Witt I am atypical- I go through several years of pain, some times 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.
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 give 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 no where near as educated on TN as I am. I've spent more hours of study on it then they every will. Especially ER doctors. And I have had an ER doctor who has never heard of TN. If you need anymore just let me know.
Kelly Case Ornelas Please don't say "There's nothing wrong with you!" And recommend a psychiatrist 😐
Cheri Williams help pain management so we are somewhat comfortable
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"
Resources:
http://www.ninds.nih.gov/disorders/trigeminal_neuralgia/detail_trigeminal_neuralgia.htm
Helpful information on potential ER assistance can be found here:
http://www.fpa-support.org/2011/01/emergency-room-management-of-episodes-of-severe-tn/
(This link includes proven treatments like IV dilantin/cerebbyx, opioids, depacon, or local injection of an anesthetic at the trigger zone)
Current thinking on and classifications of facial pain related to the trigeminal nerve can be found here: http://www.fpa-support.org/2011/05/a-new-classification-of-facial-pain-a-patient-oriented-classification-scheme-for-facial-pains-2/ (updated on 04/2013).
info@tna-support.org
On-going support for patients experiencing TN or facial pain is available at facepainhelp.com In addition, TNNME is an international awareness building organization that is internet-and social media based.
Thank you for your assistance in treating TN patients with dignity and diligence.
Toni Saunders…aka…TNNME and the International TN Awareness Fighters.
Many people are still suffering with Trigeminal Neuralgia (TN) and Facial Pains that are not treatable or controlled well. They will not arrive in the ER unless in severe duress, the treatment you provide will in some cases mean the difference between life and death. The pain is that severe, and the disease was formerly known as tic douloureux.
By the time a TN patient arrives in the ER, they may not be able to communicate; planning ahead, most will arrive with medical records (either paper or electronic), others will have a support person with them to communicate as their proxy. Many TN patients are unable to brush their teeth properly and have problematic oral hygiene, yet most will be very educated on TN and their medicines. Many use long acting or rescue opiates as well as anti-epileptic or anti-depressant medications used with neuropathies or as mood stabilizers. All of the above can make them look like people too familiar with the medical process and potential drug-seekers.
We recognize this as a legitimate concern and hope this notice preparing you for how a TN patient might appear in the ER will help you sort them out. They have had to become informed on Trigeminal Neuralgia as many of them waited years for a diagnosis and some found information on relief through national support groups such as Trigeminal Neuralgia Association and TNNME. We are suggesting to TN patients that they bring protocols from their neurologists or regular physicians to the ER, should they have need of your services, yet this may not always be possible. Your on-call neurologist should be able to assist with information and care.
The reasons a TN patient usually comes to the ER are either:
• The pain has intensified and needs to be addressed beyond the current protocol or
• There are side effects to the medications that need to be addressed.
Other issues are usually dealt with by the patient’s regular doctor and not in the emergency setting.
What TN Sufferers and Care givers are saying about better care in the ER:
By Janet McGee_ "I would want to say that Emily received two certificates from Northern Virginia Community College: National Security, and Criminal Forensics. For one of her forensics classes, Emily wrote an 11-page research paper about the operation of meth labs and the manufacture of methamphetamines. Emily groused that her professor neglected to ask her permission to disseminate her paper, but it is now required reading for all DEA agents in the country. She was also a founding member of the Young Patients Committee of the National Facial Pain Association. For one magical week, until Emily was formally diagnosed with TN, she was the FBI's first choice for an all-expense-paid ride through AMU and the FBI Academy. For all that Emily cared to see the end of meth abuse, for all the nights she spent writing responses to young patients' e-mails, she received nothing in return, save the disregard of numerous ER doctors and nurses. Emily had trigeminal neuropathy and occipital neuralgia. The rapidity of the progression of TN, when caused by nerve damage from facial surgery, is staggering in its ability to frighten both the patient and her mother. I want doctors to know that TN patients are not drug seekers but treatment seekers. TN is not just painful, it is progressive and disabling. It is a thief of dreams. Until we have a cure, we will need effective treatments. TN requires but does not get effective management. While the Facial Pain Research Foundation works on a cure, those who combat facial pain every day need relief. Patients need management that will allow them to live with dignity and with their dreams intact. And moms who have been studying neuroscience for 20+ years need not be treated like morons when they accompany their pain-ridden children to the ER for treatment. Not judgment, not fatality-inducing drugs, but treatment."
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 interaction.
John Speece Opioid pain meds are addictive, BUT, if there is no cure, then pain meds are the only relief from pain. If the TNers 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.
Alma Browne I would say ALL medics when presented with a patient with TN. should be well versed and educated on this condition, I would also state that anything that causes you such horrendous debilitating pain, should absolutely be treated with the same urgency as any other health condition, (which It presently Is not) I would tell a doctor It Is a basic human right that nobody should have to suffer such horrendous pain every single day, this Is just unacceptable In this day and age, with such advancements In medical science, It's about time all chronic pain was treated equally as a disease In It's own right, this Is not to the doctors, but moving forward we also need the World Health Organization to list It, and validate TN. and all chronic pain, which Is a huge deal, only then, will we see much faster progress being made, this Is vital.
Karen Witt I am atypical- I go through several years of pain, some times 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.
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 give 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 no where near as educated on TN as I am. I've spent more hours of study on it then they every will. Especially ER doctors. And I have had an ER doctor who has never heard of TN. If you need anymore just let me know.
Kelly Case Ornelas Please don't say "There's nothing wrong with you!" And recommend a psychiatrist 😐
Cheri Williams help pain management so we are somewhat comfortable
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"
Resources:
http://www.ninds.nih.gov/disorders/trigeminal_neuralgia/detail_trigeminal_neuralgia.htm
Helpful information on potential ER assistance can be found here:
http://www.fpa-support.org/2011/01/emergency-room-management-of-episodes-of-severe-tn/
(This link includes proven treatments like IV dilantin/cerebbyx, opioids, depacon, or local injection of an anesthetic at the trigger zone)
Current thinking on and classifications of facial pain related to the trigeminal nerve can be found here: http://www.fpa-support.org/2011/05/a-new-classification-of-facial-pain-a-patient-oriented-classification-scheme-for-facial-pains-2/ (updated on 04/2013).
info@tna-support.org
On-going support for patients experiencing TN or facial pain is available at facepainhelp.com In addition, TNNME is an international awareness building organization that is internet-and social media based.
Thank you for your assistance in treating TN patients with dignity and diligence.
Toni Saunders…aka…TNNME and the International TN Awareness Fighters.
Photo used under Creative Commons from UNDP Ukraine
