TRIGEMINAL
NEURALGIA
& SERVICE DOGS
Jen is a musician.
She is not a medical professional or certified animal trainer. Talk to actual experts for reliable information!
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Jen Hinkle is not a medical professional.
She is not qualified to diagnose medical conditions or offer any medical advice on which you should rely. She can only speak to her personal experience and understanding of her own medical conditions.
Jen Hinkle is not a certified animal trainer.
She is not qualified to design animal training protocols, offer animal training assistance, or provide veterinary support to others.
Jen Hinkle cannot guarantee that any animal, including a service dog, will be able to help you manage any medical conditions or disabilities, that you will be able to successfully train your own service dog, or that a dog will be able to perform at a level necessary for appropriate, safe, and responsible public access.
Team Hinkle encourages everyone to consult their medical and legal teams, veterinarians, animal trainers, and other professionals for expert advice and personalized information.
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A Note
If you or a loved one are navigating a Trigeminal Neuralgia diagnosis, you may be desperate for answers, options, and relief—I know I was. I am cautiously optimistic that more people with TN can benefit from the help and support of service dogs, but I certainly don’t want to give anyone false hope or incorrect information. I encourage you to proceed with a good amount of skepticism, and to remember that what works for me may not be a viable solution for you.
There isn’t enough research about Trigeminal Neuralgia to support many concrete answers about the disorder itself, much less how service dogs fit into the equation. A lot of the information presented here is pure speculation—very little is backed by science because the research simply does not exist.
We think Kita may be the first (or one of the first) TN medical alert service dogs, so this is truly new territory for everyone. If you’re interested in acquiring a service dog for your TN diagnosis, you should be aware that this is a “do your own research and talk to your doctors” situation.
We wish you all the best, and we hope you find the answers you seek.
Jen & Kita
OPERATION
DIAGNOSIS
Jen began experiencing facial pain in the early 2010’s. Over time, the pain episodes became increasingly severe and long-lasting until they were continuous.
Trigeminal Neuralgia is a bit of a mystery to the medical community and is notoriously difficult to diagnose. Jen’s pain was dismissed and/or misdiagnosed numerous times, spanning about 5 years and resulting in prolonged discomfort and gratuitous medical procedures—including 3 unnecessary root canals on one side of her mouth.
An urgent care doctor in Hawaii was the first to suggest she see a neurologist to be screened for TN based on her medical history and symptoms. She officially has a diagnosis of a mix of Trigeminal Neuralgia Type 1 and Type 2, but primarily Type 2.
Jen’s medical team approved her use of a service dog and she now only takes medication to manage TN symptoms when Kita tells her she needs them.
TN & SERVICE DOGS
We think Kita is one of the first TN medical alert dogs, so everything we have to say is a guess that is 100% not backed by science. We did our best, but do your research before making decisions.
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Possibly!
TN is a facial pain disorder that can significantly disrupt a person’s life, and a TN diagnosis can potentially qualify someone for protections under the Americans With Disabilities Act (see Sec. 12102).
According to the Americans With Disabilities Act, a service dog is a dog who has been individually trained to perform a task directly related to a person’s disability.
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A medical alert service dog is a dog who senses an impending medical crisis and alerts their handler to take a specific action to manage the crisis before they develop symptoms.
Kita is a scent detection medical alert service dog, which means she smells something that precedes Jen’s TN episodes before they become painful. When she alerts, it means Jen needs to take medication.
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We don’t know.
Trigeminal Neuralgia has many causes, and dogs may not be able to smell all of them. A person’s unique pain trigger will most likely determine if a service dog can help them, but we can’t say for sure.
Our best, not-backed-by-science guess is that medical alert dogs may be able to help people whose pain trigger involves a detectable mechanism that ramps up over time and eventually triggers a TN pain episode, such as inflammation.
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We don’t know.
Not enough is known about Trigeminal Neuralgia to know for sure if a dog will be able to help you—you’ll have to talk to your doctor and (most likely) figure out your pain trigger. Even then, your medical team might not have much information for you.
As far as we can tell, it is likely that the only way to know if a service dog can help you is to work with a scent trainer (professional or hobbyist) or experiment to see if a dog can detect a different scent in your saliva when you’re having a pain attack vs. when you’re not having one.
TN can be a symptom of other medical conditions, so if a person has a service dog already or if they wish to acquire one to address a separate condition or disability it may be possible to include TN alerts in the dog’s training.
MORE INFORMATION
CHOOSING A DOG
Service dogs are not pets, and must be selected with this in mind. Qualities such as fear, aggression, or reactivity might be acceptable qualities for pets, but if these traits cannot be reliably managed or trained out they disqualify a dog from assistance work for ethical and safety reasons.
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Jen began fostering Kita with no intention of getting a service dog. At the time, she just wanted to help Kita learn basic skills and find her forever home.
Once Kita had been in Jen’s care for a bit, Jen noticed Kita would act strangely about 30 minutes before a TN attack. After speaking with a professional dog trainer about Kita’s behavior, Jen decided to adopt her and pursue intensive training.
It is a complete coincidence that Kita happened to have the aptitude, abilities, and enthusiasm for service dog work.
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There are several ways to acquire a service dog, and they don’t have to have been bred specifically for this purpose. These options range widely in cost and availability, and each has pros and cons.
Some options are:
train a dog you already own
purchase from a private breeder
adopt from a shelter or rescue organization
purchase from a combination breeder/training program
receive a donated dog from an organization
Beware of scams, irresponsible breeders, and unqualified trainers or programs. Training hours don’t count toward your total until a dog is 6 months old.
You are unlikely to find a trainer or program that trains for TN alerts.
MORE INFORMATION
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While there are specific things to look for when choosing a service dog candidate, nobody can guarantee a dog will thrive as a service animal.
Consult a trainer or other behavioral expert to help decide which dog might be a good candidate.
Speak with your doctor about how your disability is likely to progress to ensure the dog you choose dog will be able to comfortably assist you for several years.
MORE INFORMATION
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Yes!
That said, just because you have a pet dog—even if they already react to medical events—does not mean they are your best option for a service animal. A dog must have the right temperament, trainability, and inherent ability to perform their service work to be a suitable service dog candidate.
A professional trainer may be able to offer more insight regarding your dog’s potential for assistance work. More information about service dog requirements and expectations can be found on the ADA website.
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Being a service dog is hard work, and some dogs just won’t excel at or enjoy it. There’s nothing wrong with that—they’re still good dogs—but if your dog is underperforming you may have to rethink their future as a service animal.
Keep in mind that there are a number of reasons a dog may be struggling with their work, and it might not be entirely their fault.
Talk to a professional trainer.
They’re your best resource in this situation. Be open to advice, corrections, and constructive criticism about your training process. If you’re self-training, consider enrolling in private training sessions or a thorough and guided private program.Talk to a veterinarian.
Ensure your dog is healthy, has full use of their senses, and is physically capable of performing their service work.Early retirement.
If experts determine your dog is not a good service dog candidate, you’ll have to retire or “career change” them early. You can choose to keep the dog as a pet or talk to your trainer and veterinarian about rehoming them in a safe and responsible manner. -
While it is common to see certain breeds doing assistance work, the Americans With Disabilities Act specifically states there are no service dog breed restrictions, and municipalities that have banned certain breeds of pet dogs must make exceptions for service dogs of that breed.
The ADA only applies to service dogs within the United States. If you travel internationally you must adhere to the service dog rules and regulations of your destination country, including any breed restrictions.
TRAINING
There is no cheap, easy, or fast way to train a service dog. Regardless of your training method or program, all service dogs must adhere to the same standards for public access. Plan to consult a professional trainer at some point, even if you’re self-training.
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The best training option is the one that fits your budget, comfort level, and schedule.
The ADA states that a service dog does not have to be professionally trained or certified by an organization, but this process will be quicker and more successful if you have regular access to a professional trainer. This is particularly true if you’re new to the world of advanced dog training.
NOTE: If you plan to travel outside the United States at some point, you’ll want to consider enrolling in a training program accredited by Assistance Dogs International. If you don’t have or are not eligible for ADI certification, parts of the world may be off limits to your service dog.
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There are a lot of trainers in the world who are very passionate about their work as well as the training methods they employ. Do your homework and research several trainers or programs before committing to one.
The American Kennel Club recommends working with trainers and training programs that use the positive reinforcement method.
NOTE: You are unlikely to find a trainer or program that trains for TN alerts.
Look for organizations and trainers affiliated with or accredited by:
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Some organizations offer combination breeding and training programs for service dogs, meaning that the organization will provide a service dog candidate and also train them.
This is often the most expensive option—unless the organization is donating a dog to you—and waitlists are often years long. Do your homework and be on the lookout for scams!
We don’t know of any organizations that do combination breeding/training for TN, but if you’re getting a dog for another medical condition you may be able to include TN alerts in the dog’s training.
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Many handlers purchase or adopt a dog and then enroll in a service dog training program specific to their disability. This can be costly, but having expert eyes on your training process is never a bad idea.
Unfortunately, we don’t know of anyone who is currently training for TN alerts, so you may have to call around and see if any programs for similar conditions will let you join—cluster migraines might be the closest thing, but we can’t say for sure.
Beware of unqualified trainers and scam programs!
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Some handlers choose to train their dogs on their own (this is what Jen did, with the help of a certified professional dog trainer). If you’re not used to repetitive practice, failure, or extremely honest self-reflection, this might be a difficult and frustrating process. We recommend working with a certified dog trainer—even if just occasionally—to make sure you’re on track for success.
Owner-training can be a cost-effective option for training your service dog, and is specifically protected by language in the Americans With Disabilities Act.
OWNER-TRAINING
Self-training a service dog is a massive undertaking that requires a level of self-awareness, honesty, and patience that may be unfamiliar to a lot of people. It is recommended that anyone self-training a service dog consult a professional trainer to ensure they are on the right track.
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Legally—no. If possible—yes.
We understand that professional training can be prohibitively expensive, but we recommend you plan to work with a qualified trainer every so often (more is better!) to make sure your dog is being trained in a safe and proper manner, and that they are performing up to the standard set by the ADA.
There are a lot of free training resources available online, but you’ll soon discover that the dog training corner of the Internet is a hellscape of amateurs spewing judgmental, contradictory, unhelpful garbage. We encourage you to be skeptical of advice you find on the Internet and social media.
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Because each handler’s needs are unique, there is no single list of service dog tasks or skills. Some actions (e.g. removing an item from a shelf in a store, barking, jumping up and pushing a door open, etc.) that would be inappropriate for one service dog may actually be a trained task for another.
GENERAL SKILLS FOR TN ALERT DOGS:
basic obedience
sit, stay, down, heel, etc.
housebroken
public access manners
restaurant manners
travel manners
anything unique to the handler’s work or lifestyle
service-related tasks
scent detection
other assistance tasks as needed
RESOURCES
The International Association of Assistance Dog Partners (IAADP)
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No.
While training a service dog yourself may be possible—many handlers take this route—it is not easy and there is no guarantee you’ll be knowledgable or skilled enough to handle all aspects of training on your own. It will require a lot of research, you will make mistakes, and it will take a very long time.
The good news is that training may become less cumbersome over time as you and your dog deepen your relationship, improve your communication, and you start to see real progress.
We strongly recommend that you consult a certified professional trainer for some of your dog’s training to make sure you’re on the right track.
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Jen is not qualified to offer specific training information, but she can point you in a helpful starting direction.
Choose A Trainer
A professional trainer is an excellent resource, and we encourage everyone to seek expert advice throughout this process. This personalized analysis will help set you and your dog up for success, particularly if animal training is a new skill for you.The American Kennel Club recommends finding a trainer who uses the positive reinforcement technique.
ADI Accredited Member Programs
look for organizations that will work with owners and their personal dogs
Set Testing Milestones & Goals
Once these milestones and goals are met, your dog will have a very good foundation and will hopefully react well to the rest of their training, which will likely include individualized service-based tasks.Reasonably priced classes for these tests are available at Petco or from approved evaluators/certified trainers.
Scent Training
Medical alert dogs must learn why, when, how to alert. For TN alerts, that’s accomplished with scent training. -
Saliva samples were collected from Jen when she was having a Trigeminal Neuralgia attack and again when she was not having one.
Each sample was sealed in an airtight container and Kita played a game where she had to find the container with the Trigeminal Neuralgia scent.
Kita was taught to alert Jen to her discovery by quietly and repeatedly “booping” Jen’s leg with her nose.
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6 months to 2+ years.
Depending on a dog’s abilities, training regimen, and the needs/lifestyle of their handler, a service dog’s training may last for 6 months to 2+ years before they will have developed the skills necessary to accompany their handler in public full-time.
For Jen and Kita, the scent based alert training was very quick and took about a month for Kita to learn. Jen has a uniquely demanding and challenging job for a service animal and lives in a high-energy, obstacle-filled city, so the rest of Kita’s public access manners, general tasks, and obedience training took a little over a year. This was during the pandemic, so Jen had an unusual amount of free time to work with Kita.
Service dogs must revisit their training throughout their careers to make sure their skills stay sharp, and they will likely continue to learn new skills over time.
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Yes, but they’re fake.
The ADA website cautions “there are individuals and organizations that sell service animal certification or registration documents online. These documents do not convey any rights under the ADA and the Department of Justice does not recognize them as proof that the dog is a service animal.”
Even if a handler has legitimate versions of these documents from reputable training organizations, service dogs must remain under control in public or the handler may be asked to remove them from the premises.
Please train your service dog properly. There are no shortcuts. Taking your improperly trained dog into public spaces hurts people who rely on service dogs to live their lives.
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All methods of service dog training come with a similar list of challenges, risks, and potential setbacks, but training a dog yourself opens the door to a few noteworthy additions.
LACK OF PROFESSIONAL SUPPORT
Many issues that arise during service dog training stem from two factors:A dog’s capacity to respond to training.
A handler’s abilities as a trainer.
Experts can quickly identify areas that need improvement and create personalized solutions, but if you’re on your own it will take you a lot longer to figure out what’s wrong, research solutions, and successfully implement your findings.
If you or your dog are struggling with any aspects of your training, reach out to a qualified professional for assistance—it will save you time and frustration in the long run.
INTERNATIONAL TRAVEL
Depending on the destination, a service dog may have to meet specific requirements to be allowed to enter the country, skip quarantine, and/or be afforded public access privileges during your visit. Not all of these requirements are attainable for self-trained teams (or all types of service dogs).If you travel internationally with any frequency, we recommend researching your destination’s service dog import/export regulations before choosing a training method.
The ADA protections and guidelines only apply to service dogs and individuals within the US.
SO YOU WANT A SERVICE DOG.
Training and caring for a service dog is a serious responsibility that cannot be taken lightly.
You will require input and advice from doctors, trainers, veterinarians, legal teams, and/or other experts who have firsthand knowledge of your situation throughout your journey. It is particularly important that you speak to experts during the early stages of service dog ownership, including when deciding whether a service dog is the right choice for you.
We don’t address all aspects of service dog ownership here, and there is so much more to know. Be prepared to do additional research, and be skeptical of everything you read on the Internet, including this website.