By Ellen Driscoll
When an animal joins your life, you receive health benefits, both physical and mental, that are far beyond what most people expect. Pet ownership has proven to have a positive impact on depression, anxiety, blood pressure, and heart rate changes, to name a few. Add all of that to the companionship, loyalty, and love they give us, and is it any wonder that 68% of U.S. households have at least one furry family member?
For people living with a chronic illness, a pet specially trained as a service animal brings another priceless asset...independence.
When most people think of service animals, a dog is what comes to mind, and with good reason. Dogs are the most often used species trained to be of service for disabled people. Cats, dolphins, miniature horses, monkeys, ducks, parrots, and ferrets have all been trained to perform specific tasks as “service” to the disabled. However, the legal title of “service animal” is given to different species dependent on state requirements. (1)
The ADA (the Americans with Disability Act) defines a Service Animal as a dog (2) “individually trained to do work or perform tasks for the benefit of an individual with a disability including a physical, sensory, psychiatric, intellectual or other mental disability.” The tasks can be a variety of things that help a person manage their day to day lives as long as it is directly related to the person’s disability.
The ADA protects the rights the disabled person has regarding housing, workplace, and other public places where a person may want and need to be accompanied by their dog. Most states have specific rules regarding inclusion and exclusion of animals, and each state’s Attorney General’s office can provide the specifics for that state.
Not all service animals do the same things. Besides guide dogs and hearing aid dogs, there are dogs trained for Mobility Assistance and Medical Emergency Response. Service Dogs can be trained to offer both types of assistance. There are emotional support animals that provide life-changing service for their owners also. While this category of animal is not recognized as a service animal by the ADA, most states will grant qualified, well-trained emotional support animals the same access to public spaces that an ADA dog has. There is a great site from the UK about the difference between emotional support animals and Service Dogs. The site, called “Dog Owner” is a wealth of information about the benefits of dog ownership for mental and physical health - https://www.dogowner.co.uk/dogs-mental-health/
A dog trained as a mobility assistance animal may provide help such as retrieving items from the floor, giving medication reminders, pushing elevator buttons, and many other helpful tasks. Medical emergency response animals frequently referred to as “seizure alert dogs” are trained to pick up changes in their owner’s bodies or behavioral cues that can warn that an emergency is about to take place, giving the owner a chance to react safely. This type of training has been critical for POTS and dysautonomia patients. If trained well, the dog can sense pre-syncope and give an alert signal, providing the owner time to move themselves to a safe space. They will also remain at attention by their owner’s side until the person is revived and can give the “okay” signal to the dog. Anyone who has been alone and incapacitated in a public place knows the potential dangers and the difference a service animal makes in that situation.
Two of the most common breeds trained for this invaluable profession are Labrador Retrievers and Golden Retrievers. (3) These breeds are smart, loyal, and known for their patience, all qualities needed for this work. However, It is vital for people to understand and accept the difference between owning a service animal and a pet. There is a good reason that the jackets that these dogs wear in public ask people not to pet or interact with them. Unlike owning a pet that you would encourage to be people friendly, a service animal needs to be focused on the disabled person solely. The distractions inherent in public places can make it difficult enough for the animal. If people are petting and playing with the dog, they could easily miss the subtle cues necessary for them to do their job effectively; to provide the service they are trained to do, the dog needs to be attached to the person they are assisting. So regardless of what method you elect to use, there is always some training needed between the disabled person and the animal.
Types of Training
There are many ways to bring a service dog into your life.
Buy an accredited Service Dog
Bring your dog to a professional company for training.
Train the dog yourself.
Service dog training is a very long process and can be very expensive. For a dog to become accredited, the animal must be able to respond to commands and be proficient in specific skills. They also must be able to pass the Assistance Dogs International Public Access Test.
Buying an accredited Service Dog
Assistance Dogs International is an organization that establishes the standards for the Service Dog industry. ADI provides links to accredited companies that meet these standards. You can search for a company on their website - https://assistancedogsinternational.org/members/programs-search/
Buying a service dog is not as easy as just picking one out. The application process is a long one with the initial inquiry form taking 6 - 8 weeks to be reviewed. If the preliminary form is approved, then the actual application is sent out. Once received, it takes another 6 - 8 weeks for a medical review board to process the application. At that point, the person wanting a dog is either approved or disapproved. If you pass to this point, the process goes forward. The average cost for a Service Dog is $25,000. Many companies will work with approved applicants on fundraising and cost options if there is financial hardship. Most programs require the disabled person to stay at the company’s training facility for three weeks to a month to train the dog and the owner and to prepare them for the public access testing. Most programs include periodic training, evaluation, and recertifications as needed.
Training Your Own Service Dog
Some companies provide training for disabled people who have a dog that they believe would make an excellent Service Dog. However, the personality of a great pet is not necessarily the same as a great Service Dog. The American Kennel Club offers the following list of qualities that make a dog a good candidate for service:
Calm but friendly
Alert but not reactive
Able to be touched by anyone, including strangers
Willingness to please
The natural tendency to follow you around
Socialized to many different situations and environments
Ability to learn quickly and retain information
Many companies that offer training will also evaluate your dog to see if he or she is a good fit. They may also help you find a dog that they believe will offer the best chance for success.
The upfront cost of a professional program is much less than buying an already accredited dog, averaging $5,000 to $10,000. However, there is not a guarantee that the dog will pass the accreditation test the first time. Also, this upfront fee doesn’t include ongoing training or recertification in most cases. Those fees are usually in addition to the upfront costs. It is important to talk to the company or the ADI to find out about any ongoing costs required to maintain accreditation.
Most professional training programs require about six months to complete all courses and prepare for the access test. Many organizations will offer training classes where professional trainers work in small groups providing the guidance needed for the owner to work at home with the dog to develop those skills. They also will offer private training that involves one-on-one instruction between the owner and the dog.
There has been a recent trend toward owners taking on training without hiring a professional. There are many resources online and blogs by people who have trained their animals. On the site, “The New Mobility,” Holly Koester (4) describes the process of teaching her black lab basic obedience and additional commands before seeking the specific training her dog would need for accreditation. Koester clicker trained her dog to be proficient with “sit,” “lay down,” “stay,” as well as other basic commands. After she had full confidence in that stage of learning, she moved on to teach commands like “pull” and “push,” giving her dog the headstart toward learning the skills to offer assistance in things like opening a door or closing a drawer. Koester estimates this approach shortened the amount of time her dog Spokes needed for professional assistance training down to three months.
No matter what the approach, training a service animal begins with teaching the owner. For people who don’t feel equipped to handle the basic obedience pre-training, there are companies like Top Dog located in AZ, (5) and The Dog Alliance in TX, (6) for example, that offer in-person and online classes for owners. Top Dog’s introductory class pairs owners with volunteer training assistants, and guides the owner through teaching the dog the basics and also how to understand the dog and how they communicate with you. The program goes on to the Intermediate, which begins the specific course work for assistance skills. Eventually, the owner and the dog are ready for the Assistance Dog Exam. Although the program is considerably less costly (the intro course is $200), it may not save you any time. Top Dog estimates a year and a half of training until the exam and much longer if a dog or owner doesn’t catch on to commands the first time around.
The Dog Alliance provides accredited dogs as well as owner training classes. The introductory course requires an owner to take a preliminary seminar on basic obedience training and that their dog either pass that class or has instructor approval to move on to the Service Dog training class. The advanced class focuses on assistance skills and preparation for the Assistance Test.
There are also training manuals and online training available to owners who have prior experience with basic command training or have owned a Service Dog before. Regardless of the path taken to get there, the goal should be to have a well-trained animal capable of passing the Assistance Test for Service Animals. Without this credential, there is always a safety risk in using an animal for mobility assistance.
A Final Word
Regardless of the type of training you decide to use, always check for the certification of the program and professionals you choose by researching the company through the Assistance Dogs International site - https://assistancedogsinternational.org/ This organization sets the standards for assistance animals, and trainers, as well as providing the official test for dogs to be accredited Service Dogs.
It is critical to understand that even though it is costly and time-consuming to go through all the hoops necessary to have an accredited Service Dog, it is dangerous and irresponsible not to. To protect the rites of the disabled population, restaurants and other public places are not allowed to question whether an animal is accredited or not, or why they are needed. Also, there are service dog vests that can be bought online without proof that the buyer is disabled or the dog is accredited. Unfortunately, this has led to some people abusing this law as a way of bringing their pets along to places they would not be permitted. This behavior puts accredited service animals at risk and puts any disabled person in their vicinity in unnecessary danger.
A Service Dog that finds a human partner as dedicated as they are to be consistent in their training, generous in their praise and affection, and focused on one another, will have a better quality of life together than they ever would have had alone.
For more information on Service Animals, visit these resources:
For personal stories and to connect with the owners of Service Animals, visit:
Hannah's Story: https://www.dinet.org/member-stories/lean-on-me-the-remarkable-story-of-a-young-woman-with-pots-and-the-dog-that-keeps-her-safe-r208/
Service Dogs for POTS - https://www.facebook.com/groups/110152023042832/ - this is a closed Facebook group, but if you send them a message to join or to get more info, they are very responsive.
1. Federal and State laws regarding Service Animals can be found at https://usaservicedogregistration.com/service-dog-state-laws/
2. In rare cases, the ADA will allow for a miniature horse to be certified as a Service Animal. https://adata.org/faq/i-heard-miniature-horses-are-considered-be-service-animals-ada-true
3. AKC Service Dog Training 101, https://www.akc.org/expert-advice/training/service-dog-training-101/
4. Training Your Own Service Dog by Roxanne Furlong, http://www.newmobility.com/2006/12/training-your-own-service-dog/
5. “Top Dog Teamwork” from the article Training Your Own Service Dog by Roxanne Furlong http://www.newmobility.com/2006/12/training-your-own-service-dog/
6. Service Dog Training, Out and About https://thedogalliance.asapconnected.com/#CourseGroupID=12147
By Chelsea Goldstein
Meet Erin. She has talents for research and storytelling, both of which helped her excel in her work as an investigative journalist and managing editor of several magazines. When she began her career, she did not know that these talents would be central to discovering, in her mid-thirties, critical diagnoses including fluoroquinolone (antibiotic) induced dysautonomia, hyperadrenergic POTS, and neuropathy, that made all the difference in her health.
Erin’s story shares some common elements with many of our experiences. She had a swift and severe reaction to a course of antibiotics that left her with widespread nerve damage and severe disability. She began experiencing extreme dizziness, fainting, tachycardia, and sweating. She visited over fifty doctors in multiple states in pursuit of an answer. Many of the traditional medical tests, such as blood work and CT scans, came back normal, and several doctors told her that her symptoms were “all in her head” or caused by “just anxiety.” Despite these professional dismissals, Erin’s body continued to tell her something was very wrong. She followed this instinct that led her to discover dysautonomia (and DINET!), and she began to connect the dots of her symptoms. Through her own research, she identified the diagnostic criteria for dysautonomia and advocated for her own testing. An understanding neurologist respected her instincts, and testing confirmed that her symptoms were the product of dysautonomia.
While six months is six months too long to seek an explanation for life-altering symptoms, we know that Erin’s diagnostic process is relatively short in the world of dysautonomia. I attribute this to her tenacity in research and fearless self-advocacy. Had she not fought for her own diagnoses and trusted her body, she may still be searching for answers and living in the psychological torment of the unknown. She advocates for improved diagnostic processes for dysautonomia. Her experience of being dismissed, adding unnecessary psychological distress to her already debilitating symptoms is still very fresh. She also calls for all of us to value those doctors who are strong listeners with open-minds.
Part of Erin’s strength is being vulnerable about her struggle in the first years of living with her conditions. Prior to the swift onset of her symptoms, she was a newly-wed at the top of her field who loved to travel. Much of her identity was based on her accomplishments and go-getter mentality. She admits that she spent a couple of years grieving the loss of her old self, which impacted her mentally, emotionally, and spiritually. She had suicidal thoughts and questioned her beliefs—why do some people experience miracles and others don’t? Erin always viewed her friends as her family and then felt a distancing from many of them. She expresses some empathy toward these friends now, understanding that her disability may remind them of their own mortality.
Today, Erin has bad days and better days. On days that she is bed bound, fears surface that her progressing neuropathy will cause her to lose function in some areas of her body. However, she is actively working to adjust to her new normal and seeks gratitude for the things that she has. Perhaps, most importantly, is finding forgiveness. Erin is working on forgiving the doctors who did not believe her, and she is working on forgiving herself. Like Erin, many of us internalize unnecessary self-blame -what did I do to cause this? What could I have done differently? Is it really all in my head? She is also working on finding forgiveness for her God and finding a path forward with her own spirituality. Her healthy outlook reminds her that acceptance is a process. Erin also credits the strong support she receives from her husband as central to finding her new normal.
So, what can we learn from Erin? We can learn to fiercely and bravely advocate for our own bodies. We can work never to let a doctor’s credentials make us feel small. We can remember to value, and show gratitude toward the doctors and others who have helped us along the way. We can show ourselves love each day - no matter where we are in the acceptance process. In essence, Erin reminds us to be warriors who wear our battle scars proudly. At the same time, she reminds us that warriors experience incredibly challenging life circumstances, and, like true warriors, we must learn to be vulnerable about our mental, emotional, and spiritual wounds so that we can work to heal those, too.
Our Newsletter has been published quarterly by DINET since 2003. Each edition includes information touching on many aspects of living life with dysautonomia. This publication is a labor of love from volunteers that include writers, our medical advisory panel and design and editing staff, all volunteering their time and talents to make each edition informative and worthwhile. New editions are published in article/web format. Older editions are in pdf format and require a download. If you have difficulty downloading, or need a copy of an edition not in the list, please contact firstname.lastname@example.org
June 2019 Newsletter - Managing & Enjoying Life
February 2019 Newsletter - Thriving
August 2018 Newsletter - Investigation & knowledge
April 2018 Newsletter - Communication
December 2017 Newsletter - Looking back & looking forward
July 2017 Newsletter - Challenges
March 2017 Newsletter - Empowerment
If you have dysautonomia, you already know that your autonomic nervous system is faulty. And of all the systems controlled by our autonomic nervous system, regulating body temperature can be the "big" one during the summer. Due to poorer temperature regulation, many of us might experience major health issues this time of year - noted by excessive sweating or the inability to sweat.
Heat intolerance in particular, is a big problem throughout the summer. Fatigue is increased, as well as the possibility of dehydration. Along with those two symptoms, is the near guarantee that others will be increased and/or aggravated such as dizziness, nausea, light-headedness, tachycardia, and weakness.
While there is no cure for the dysfunction of the autonomic nervous system, there are certainly steps that can be taken to help fight the heat. Avoiding direct sunlight is very important, as well as staying as cool as possible. Cooling vests , neck ties and cooling towels can be bought, as well as wick-away clothing that helps to keep the body cool. I have found that a wet towel thrown in the freezer for a little bit can be very refreshing. Even better, I get a towel wet and drop a few drops of peppermint extract on it and then cool it in the freezer. I don’t leave the house without my mini spritzing fan. It has saved my life several times and was certainly worth the three-dollar investment. Ice packs are also an option. They can be used inside the collar of clothing or in the groin area if severely overheated. Although, when using ice, care needs to be taken to avoid the packs coming in direct contact with the skin. It is imperative to avoid standing while in the heat.
Finally, staying hydrated is of the utmost importance. Sweating excessively can lead to a large amount of salt loss which can be life threatening. But even just a small amount of salt lost through sweating can cause symptoms to flare if not hydrated properly. Therefore, it is necessary to replenish electrolytes when out in the heat. While Gatorade and Powerade can sometimes be the quickest and easiest ways to do so, many people may be concerned by the amount of sugar and artificial dye and flavors in these sports drinks.
If you are concerned about commercial beverages, there are many homemade electrolyte drink recipes available online, as well as products that use less sugar and dye. Some of the more popular are Normalyte, Banana Bags, and my personal favorite Nuun electrolyte tablets which can be dropped into a bottle of water. Nuun tablets are also gluten free, vegan, non-GMO sourced, and soy and dairy free which makes them an excellent choice for those who have allergies as well. The product choice is yours, but be sure you don’t skip out on replenishing your electrolytes while out in the heat. Your body will thank you!
Don’t let summertime get you down and sick. Do your best to get out and enjoy the weather, but be prepared to cool down and hydrate up!
DINET collects relevant research related to dysautonomia disorders and related conditions & illnesses. This is in no way meant to be a complete list of all research currently underway or the results of research currently made public. But it is a summary of key research studies that we hope are relevant and potentially important to our members' ongoing treatment and prognosis. Please check back as this page is regularly updated.
NEW: Test developed for CFS/ME to detect the reaction of immune cells and blood plasma to stress. (Pub May 2019) https://www.pnas.org/content/early/2019/04/24/1901274116
NEW: Research published by Frontiers in Neuroscience demonstrate improvements in cognitive function, as well as a decrease in HR in POTS patients after rapid water ingestion. (Pub April (2019) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6465605/
New: Study released by Dr. Lucy Diss and colleagues about the effects of propofol on motility. Published in Autonomic Neuroscience. (in progress for Pub July 2019) Abstract: https://www.sciencedirect.com/science/article/abs/pii/S1566070219300426
New: Study released by Dr. Julian Stewart and colleagues discusses Postural Hyperventilation and the resulting variant POTS disorder. Pub Journal of the American Heart Association. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6064900/
New: An examination of the experimental and clinical trials conducted in the treatment and diagnosis of MSA. Pub Science Direct, Autonomic Neuroscience Vol 211 https://www.sciencedirect.com/science/article/pii/S1566070217301522
New: The Journal of Parkinson's Disease reviewed the impact of different exercise modes on people suffering from Parkinson's Disease. Pub IOS Press, Feb 2019 https://content.iospress.com/articles/journal-of-parkinsons-disease/jpd181484
Updated Info: Dr. Raj and associate, Dr. Miller's updated article about the pharmacotherapy for POTS. Pub. May 2018 in Science Direct, Autonomic Neuroscience. https://www.sciencedirect.com/science/article/pii/S1566070218300250
NEW: An examination of whether the impairment of the Corticol Autonomic Network (CAN) of the brain is involved int the psysiology of Neurogenic Orthostatic Hypotension (NOH) Pub. Oct 2018 https://www.ncbi.nlm.nih.gov/pubmed/30332348
NEW RESULTS: The need for specific diagnosis and treatment for patients labeled with CFS and Fibromyalgia. Important research results from one of DINET's Medical Advisors, Dr. Svetlana Blitshteyn and her colleague, Pradeep Chopra, Pub date Oct 2018 Read full article: 2018CFS_Fibromyalgia_ChronicPain_PubKarger.pdf
Updated info from the CDC on HPV Vaccine safety for POTS patients https://www.cdc.gov/vaccinesafety/vaccines/hpv/hpv-safety-faqs.html Follow up to: HPV Vaccine and POTS - https://www.ncbi.nlm.nih.gov/pubmed/28689455
Complex Regional Pain Syndrome, Type 1 - Diagnosis and management. https://www.ncbi.nlm.nih.gov/pubmed/29409405?_ga=2.71311891.1204982470.1531704876-989465291.1526426607
Study results: A presentation made by the American Association for Cancer Research at their annual meeting reported findings related to health risks in post-menopausal women using medication for high blood pressure. The report claims an increased risk of pancreatic cancer in post-menopausal women using short-acting calcium channel blocking medications for their blood pressure treatment. Read the information from the AACR.
Study results: NE Journal of Medicine releasing study results for episodic migraine treatment using Erenunab. The publication is reporting a 50% or greater reduction in the average number of migraine days per month. Read more about this study
Study results: Physical maneuvers are viewed as important and promising strategies for reducing recurring episodes of syncope in vasovagal syncope patients. Read the result of the study published Jan. 2018
Study results: University of Alberta & McGill University release their findings for a new therapeutic agent that may hold the potential for the prevention of MS
Article synopsis: https://bit.ly/2GhF5FK
Research Article: https://insight.jci.org/articles/view/98410
Study results: Could gut bacteria be the key to preventing autoimmune disorders? Researchers from Yale, New Haven, CT are reporting that discovery that bacteria in the small intestine can travel to other organs and induce an autoimmune response. They also are reporting that antibiotic treatment or vaccine may be the key to combating this reaction. The study results were originally published in the journal Science. This article from Medical News Today gives a synopsis of the findings and links to the full study. https://www.medicalnewstoday.com/articles/321157.php
Genomics and Health Impact Blog - a discussion about gene testing from the CDC
There have been enormous contributions towards disease prevention in women's health, in particular, the development of consumer testing for the BRCA gene. The benefits cannot be applauded enough. However, health protection & research organizations like the CDC, are increasingly warning consumers about the need for professional counsel when interpreting results. This article, humorously entitled "Think before you spit" tempers the amazing breakthroughs with the cautionary information we need to have to be able to put a perspective on the results testing may give us. https://blogs.cdc.gov/genomics/2017/04/18/direct-to-consumer-2/
1st lab test to detect concussion approved by FDA
For any person who has fainted or fallen and hit their head, the blood test approved recently by the FDA could be a lifesaver. The test detects concussion by looking for specific proteins released into the blood within 12 hours after the head trauma. Known as the Banyan Brain Trauma Indicator it can reduce the need for CT Scans and radiation and will produce results within 3 - 4 hours following injury. Read more about this important breakthrough
Neuroprotective diet having good results for people living with MSA https://www.multiplesystematrophy.org/about-msa/neuroprotective-diet
POTS & Ehlers-Danlos Syndrome
"Postural tachycardia in hypermobile Ehlers-Danlos syndrome: A distinct subtype?" by Miglis MG, Schultz B, and Muppidi S, from the Departments of Neurology and Psychiatry at Stanford University Medical Center.
"It is not clear if patients with postural tachycardia syndrome (POTS) and Ehlers-Danlos syndrome (hEDS) differ from patients with POTS due to other etiologies. We compared the results of autonomic testing and healthcare utilization in POTS patients with and without hEDS."
Hydration and POTS syndrome
POTS is a syndrome associated with a multitude of symptoms, one of the most significant being a sudden elevation in heart rate when standing. This symptom is usually associated with dizziness and even passing out. The treatment of POTS syndrome is complex, however, a key strategy that works well for many people is increasing hydration and salt intake to prevent dehydration. Increasing salt should only be done on a doctor's recommendation.
Even healthy people (people without POTS or any other forms of dysautonomia) show improved functionality when well hydrated. The tilt table test, a hallmark test in the diagnosis of POTS, was given to 22 healthy people. Half of them were given 16 oz. of water shortly before the test, the other half were not. The well-hydrated group was able to remain upright with less of a change to heart rate and circulation. The hydrated group well tolerated the test for 36% longer than the less hydrated group.(Low 2000)
More than water…..
There is plenty of documentation* about the importance of hydration and the amount of fluid required to help POTS symptoms. But water alone may not be enough for some people. It is generally recommended that a minimum of 2 to 3 liters per day be consumed, however, that much water alone can dilute the number of electrolytes in the body and become counterproductive.
There are many electrolyte drinks on the market, but care needs to be taken to avoid some of the high sugar solutions and additives that can be found on the supermarket shelves. That's why DINET partnered with Banana Bag Oral Solution in 2016. Banana Bag provides the hydration recommended as well as many other wonderful supplements designed to help us "POTSies" feel a whole lot better! Here is some great information from Brian Derry (Owner, Ph.D., Pharmacist) about their products and the amazing custom blend he created.
Banana Bag also offers DINET members a 10% discount on any subscription to their products for the life of the subscription. This is a 10% savings on the already discounted subscription price. Go to https://www.bananabagdrink.com/products/the-banana-bag-oral-solution & use promo code DYS10 to receive the additional 10% off at checkout. What an incredibly generous way to support our membership and the work we do. GREAT THANKS to BANANA BAG ORAL SOLUTIONS!
What people are saying: "love my daily Banana Bag!" Dana Irwin, St Louis. Check out this review and others by visiting https://www.bananabagdrink.com/products/the-banana-bag-oral-solution Use promo code DYS10 to save an additional 10% off the already discounted subscription price.
Hydration and POTS syndrome.pdf
Low, P. A. (2000, July). Orthostatic intolerance.
National Dysautonomia Research Foundation Patient Conference, Minneapolis, Minnesota
For most people working is a necessity, a passion or a combination of both. For a chronically ill person it can also be a burden. As an illness progresses, continuing to work may require making very difficult choices.
I was very lucky to have worked in a supportive environment, in a career with some flexibility at its core. Many people are not as fortunate. Employers may lack the understanding to give the employee what they need, or, in many cases, the nature of the job itself prohibits any changes to accommodate illness.
So what does happen once you have used all your sick days and vacation time, and you still cannot get yourself through the workday? For many chronically ill people, the decision of what to do is not left to them. You are forced out of the job you need and possibly loved before you are prepared to go. You want the time to explore all the possibilities before deciding whether continuing work is right for you and your employer. In my case, my employer worked with me to adjust my schedule, and to change some of my responsibilities. Unfortunately, it was still not enough for me to remain in the job. Finally, I made the decision to stop working and devote what little energy I had on learning to cope with my illness. However sad and frightening it can be to leave the workforce, there can be silver linings and a sense of relief once the decisions have been made.
The nature of your job and the limitations of your illness will help you make the right decision. Consider the following when trying to resolve one of the most difficult aspects of chronic illness - work.
1. Explore all possibilities – Can you adjust your schedule to make it easier on yourself? If your medications make you tired, can you take them on a different schedule? Are there physical aids that may help – ergonomic chairs, adjustable desks, speech to text software, etc.? Can you job share with another worker? Can you transfer to a different department or job that may be easier for you to handle or have hours more suited to your day?
2. Have the “talk” Most people struggling to keep their jobs are terrified that their bosses or HR will find out that they are ill. However, if your illness has progressed to the point where you are considering these issues, then in all probability your co-workers already know you are ill. In truth, their imaginations might be creating scenarios that are much worse than what is really happening to you. This does not mean that they are entitled to pressure you to divulge medical information that you may not want to reveal, but you do need to share some of your struggle with the people who may be able to help.
3. Know the financial impact Research your options for disability pay, Social Security, medical insurance, etc. There is much to consider. Before your paycheck stops, you will need to know what programs are available. In the U.S., some states have disability insurance plans that will cover you for the first 6 months after you stop working. Some companies have disability insurance as one of your employee benefits. Those plans typically cover you for 6 months at a percentage of your gross salary. Both state and private plans are considered “temporary” disability coverage. But you may be able to qualify for that coverage while you apply for Social Security Disability Insurance (SSDI). Be aware that in some instances, SSDI can take a year or more to begin and frequently may require filing an appeal to get approved for coverage. Plan for this if possible. If you have medical insurance through your job, find out how long your coverage will continue and at what cost. Medicare will become available once you are approved for SSDI, but only after a 24 month waiting period has passed. Some countries have Disability Living Allowances for the disabled person and sometimes caregivers, depending on the situation. Your children can receive aid if you are disabled. Each country is different and you need to know your rights. Explore the rules regarding your pension and 401K or other retirement benefits. In some cases, because of disability, these plans can be accessed without penalty. These plans may be critical towards helping you meet your financial obligations until your SS and Medicare kick in. There are also Medicaid options if your income is within certain guidelines. Some social service agencies have services that may help in this search. These professionals know all the criteria and eligibility guidelines and may also know about services that would be difficult for a layperson to find. Go online, talk to people, explore and prepare.
4. Be completely frank Talk to your family and your doctor. Tell the truth about what you are feeling and what your days are like. Try and discern what you really need. Will a temporary break to give you some rest and a chance to regroup improve your situation? Or is your fatigue a permanent part of your life now? Decide whether working is adding to the quality of your life or detracting from it on a holistic level. Are you so ill at the end of the work week that you are missing out on family life on the weekends? Does your spouse see negative changes in your moods at home and your ability to parent? Explore with your doctor and family to see if these things can be managed differently or if work is negatively impacting your life in more profound ways. One of the defining moments for me was realizing that I required a two hour, mid-day rest to be able to think clearly and relieve some of my pain. My doctor helped me to understand that this was a part of the illness and wasn’t something temporary.
5. Discuss other work scenarios Could you work differently? There might be financial, emotional and social benefits of finding work in a business owned by a trusted friend or family member. Isolation can be a very real part of disability. Work can help you manage your illness by offering distractions, social interaction, and emotional support. If you can work it may help you maintain a positive mental attitude. Don’t give that up unless you have to. But if you decide that being home will serve you better, then plan for ways to make up for that loss of social and emotional support. Find ways to stay in touch with friends. Look to connect with new people. Since finances can be a struggle, find simple pleasures that won’t cause financial stress. We often forget how many “free” things in life are available to us and how much they can nourish our spirits. Reading a good book, listening to music, meditating, visiting or calling a friend, watching a movie, taking a walk (if you can)….all will fill your spirit and not break the bank.
6. Helping others There is no better way to feel better yourself than making someone else feel better. Even if you are accepting help to manage your day to day life, that doesn’t mean you cannot improve the life of someone else. Helping others doesn’t only mean volunteer positions that may require a drive across town and a 10 hour a week commitment. Writing a blog about anything you feel passionate about can help other people. Posting to a patient forum is a wonderful way to help others. You can share information and support with other people going through similar health trials. Look for a support group that you can participate in. Support a fundraiser for a cause dear to your heart. Are there skills from your job that can be useful to other people still in the working world? Can you mentor someone pursuing a similar career to yours? Focus on the things you can do instead of the things you can’t and you will discover many possibilities. There are many things you can do from home and online. Just the act of thinking of ways to help other people will do you a world of good.
7. Your job did not define you, you defined your job People bring their personalities, their strengths and weaknesses with them to their jobs. No matter what your position, the way you did it, was all yours. Those qualities are what define you and they don’t go away when the job does. Amy Morin, author and psychotherapist, wrote an article in Forbes magazine recently about self-worth and self-esteem. She lists 5 common things that most people use to determine their self-worth – what they do, how much money they have, the people they are around, what they achieve and how they look. All five are greatly affected by illness and whether you continue to work.
If you have always looked at such external factors as the measuring stick for your self-esteem, you are more likely to feel depressed and disconnected when you stop working. As a society, we spend more time finding out what people do instead of who they are. It’s no wonder there is such a feeling of loss when you can no longer answer the question “what do you do?." Examining what is at the core of who you are as a person is essential. It sounds cliché but it is a worthwhile exercise to think about how you would spend your last day on earth. Very few of us would answer “at work.” So how can work be at the heart of our definition of ourselves? Don’t be too proud to ask for help if you need it – there are therapists who work with the chronically ill and they are most experienced in helping you deal with any depression that may come up. If you are a person of faith, consulting with your pastor or priest may help set you on your way. Finding an illness support group in your community or online can be a wonderful way to connect with other people going through what you are. The group may be filled with people who can offer you guidance as well as companionship and understanding.
In the end, doing our best whether we continue to work or we decide we are best served at home, is essential. We can’t choose whether we are in pain or not, or ill or not, but we can choose how we deal with it. Making these critical decisions about work are part of dealing with our illness.
A few links to helpful articles:
Social Security Administration: Disability: https://www.ssa.gov/benefits/disability/
Life after work, when chronic illness makes you quit a job: https://creakyjoints.org/blog/life-after-work-when-chronic-illness-makes-you-quit-a-job-you-really-love/
Working with chronic illness: http://cicoach.com/blog/
Managing chronic illness at work – NYTimes: http://well.blogs.nytimes.com/2009/06/19/managing-chronic-illness-at-work/?_r=0
5 Ways You’re Not “Living” with Chronic Illness: http://www.huffingtonpost.com/ilana-jacqueline/personal-health-_b_5482294.html
Description, Physiology & Onset
Hyperadrenergic POTS is a subtype of POTS that affects about 10% of patients with dysautonomia symptoms due to orthostatic intolerance. (Grubb et al, 2011) The mechanism differs from other types in so far as it is caused by centrally driven sympathetic activation. In other words, symptoms are caused directly from an ANS malfunction, rather than the ANS malfunction being a response to another cause. This results in patients having increased norepinephrine (adrenaline) in circulation and a rise in systolic blood pressure upon standing.
Two additional characterizations of hyperPOTS go hand-in-hand - hypovolemia and the reduction in the activity of the enzyme renin and aldosterone. When a person with hyperPOTS is upright, there is a loss of plasma blood volume into the surrounding tissue (hypovolemia). In people without hyperPOTS, there is a normal reduction in urinary sodium levels when upright. This mechanism doesn't happen effectively in a person with hyperPOTS and this contributes to the severity of the reduced blood volume upon standing. In addition, the plasma enzyme renin plays a major role in the regulation of blood pressure, thirst, and production of urine. When standing, the activity of renin and aldosterone is greatly reduced in a person with hyperPOTS.
The third major characteristic is the elevated norepinephrine and epinephrine levels in a person with hyperPOTS. Adrenaline is a neurotransmitter, a substance communicating within the nervous system and it is active in the synapse, the junction between nerves. When present, it causes activation of the sympathetic nervous system, causing an increase in HR and/or BP, commonly known as the “fight-or-flight response” which causes excitement, tremors, etc. The increase of norepinephrine can be activated by different mechanisms, the ANS produces too much adrenaline ( centrally mediated hyperadrenergic activation ), the excess adrenaline does not get cleaned out of the synapse once no longer needed ( Norepinephrine Transporter Deficiency ) or autoimmune antibodies against cholinesterase receptors. (Vanderbilt)
The onset of hyperadrenergic POTS is largely the same as other forms of POTS, with the onset of symptoms following precipitating events such as viral infection, pregnancy or trauma, including surgery. Another cause found in hyperadrenergic POTS is MCAS ( mast cell activation syndrome ). In this case, the circulating vasodilator produces reflex sympathetic activation which causes symptoms like flushing and orthostatic intolerance ( the inability to compensate for the upright posture ). (Vanderbilt)
The criteria for diagnosis shares many factors with POTS; including the presence of symptoms for 6 months or longer, a Head-Up Tilt Table Test (HUTT) shows tachycardia of 30 BPM or above 120 BPM in the presence of orthostatic intolerance within the first 10 minutes of upright posture. Patients are diagnosed with the hyperadrenergic form of POTS based on an increase in their SBP ( the higher number ) of at least 10 mmHg upon standing or during the HUTT with concomitant tachycardia or serum norepinephrine levels of above 600 pg/ml when upright. (Grubb, et al, 2011)
The symptoms of hyperadrenergic POTS are often shared with other types of POTS but also can be specific to this type of POTS: anxiety, tremors, orthostatic hypertension, and cold hands and feet being specific to this type. Other symptoms include fatigue, palpitations, dizziness and presyncope, syncope, excessive sweating, nausea/ diarrhea/ bloating, excessive stomach acid, increased urine output upon standing. Similar symptoms can be caused by pheochromocytoma ( a benign tumor on the adrenal gland ), so the presence of this must be ruled out before the diagnosis can be made. (Grubb et al, 2011)
In addition to increased fluid intake and compression garments, it can be helpful to increase salt intake, but caution is needed when hypertension is present. Twenty (20) minutes of mild aerobic exercise ( in fresh air when possible ) 3 times a week has been proven effective. A fine balance of activity and rest periods can prevent hyperadrenergic symptoms and can promote healthy sleep patterns.(Grubb et al, 2011)
There are many medications that have been effective in symptom improvement, however, there are no FDA approved drugs for the treatment of this type of POTS. The treatment is highly individual, which means some meds will help one patient but not the other. This can create a frustrating process of trial-and-error but often will lead to the discovery of the right combination.
Some of the medications that have been found helpful are:
Beta-blockers (especially the combination of Carvelidol and Labetaiol)
One of the more significant findings in the treatment of hyperPOTS is the general observation that centrally acting sympatholytics (Clonidine, Methyldopa & others) and beta-blockers seem to work better to manage symptoms in people with hyperPOTS than patients with neuropathic POTS. (Grubb, et.al)
Hyperadrenergic POTS is often chronic and can be progressive. Some patients are disabled and unable to work while others are able to function with limitations. It has been shown that treatment is challenging since often the symptoms change or increase over time and medications may need to be adjusted or changed.
It is important to note that most research into POTS and subgroups of POTS recognize the inherent problems associated with trying to narrow down the specific subtype. One of the most difficult problems is that the abnormalities seen in different subtypes are not mutually exclusive from other abnormalities. For example, a person with the norepinephrine levels indicative of hyperPOTS may also have QSART levels pointing to neuropathic POTS. Therefore, most physicians specializing in the treatment of POTS disorders focus on the specific abnormal findings instead of focusing on categorizing the subtype. (Vanderbilt) (Grubb)
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Blair P. Grubb, Khalil Kanjwal, Bilal Saeed, Beverly Karabin, Yousuf Kanjwal Clinical presentation and management of patients with hyperadrenergic postural orthostatic tachycardia syndrome. A single center experience, Cardiology Journal, 2011, Vol 18 No. 5 https://journals.viamedica.pl/cardiology_journal/article/view/21202/16806
Autonomic Dysfunction Center
Italo Biaggioni, David Robertson, Cyndya Shibao, Amanda Peltier, and additional faculty members, et al. Hyperadrenergic Subgroup and POTS subtype: Does it really matter?https://ww2.mc.vanderbilt.edu/adc/38938
There is very little literature about the effects of POTS on pregnancy. There is far more studies related to the effects of pregnancy on POTS patients and their symptoms. However, to put anxious minds at ease, there has been no significant change in maternal or fetal related complications and 60% of patients remained stable or improved during pregnancy (Blitshteyn et al., 2012).
According to current research 2/3 of women experience improvement of symptoms in the second and third trimester and 1/3 of women develop worsening symptoms. There does not appear to be a difference between first-time pregnancies versus multiple pregnancies and there is no evidence of adverse events in pregnant women with POTS. POTS does not pose an increased risk for pregnancy or birth. (Kanjwal et al.,2009)
Physiological changes in pregnancy
In the first trimester, there is a 50% increase in blood volume to supply the vascular system of the uterus, an increase in cardiac output and peripheral vasodilation. There is a decreased sensitivity to vasoconstrictors such as angiotensin and norepinephrine and an increased production of vasodilators like nitric oxide and prostacyclin. (Goodman et al., 1982; Gant et al., 1980) This can increase the acute symptoms of POTS in the first trimester, such as tachycardia, lightheadedness, fatigue and even syncope as well as other symptoms of POTS. Still, 60% of patients remained stable or reported improved symptoms during pregnancy (Blitshteyn et. al., 2012)
Treatment of POTS in pregnancy
The treatment of POTS in pregnancy is highly individualized and based on symptom relief. It is recommended that general guidelines for POTS treatment be used during pregnancy. (Sheldon et al., 2015)
Usual first-line treatments are:
Exercise - 25 to 30 minutes of mild exercises per week, avoiding upright posture (swimming or recumbent bike are recommended and better tolerated) and exercises performed lying on the left side to minimize compression of the vena cava.
Oral hydration of 2 l of water daily as well as increased salt intake of 3 - 5 gm sodium per day except if hypertension is present or pregnancy is high risk for hypertension.
Compression garments can be helpful and are covered by most insurance plans with a prescription. There are also compression stockings specifically designed for use during pregnancy.
Medications during pregnancy
Whenever possible patients have weaned off medications during pregnancy. For patients with debilitating POTS symptoms, particularly patients with recurring syncope, medications can be safely prescribed. (Ruzieh, Grubb, December 2018)
Some of the more commonly prescribed are ( not limited to 😞
Midodrine - trialed in pregnant patients with POTS with no adverse maternal or fetal outcome (Kanjwal et al., 2009: Glatter et al., 2005)
Beta Blockers - such as Propanolol were found to be effective on lessening symptoms without adverse reactions (Raj et al., 2009)
Fludrocortisone - used by Kanjwal et al., 2009 in a pregnant patient with POTS with no significant adverse effects.
In patients who are not fully helped with the above solutions, Duloxetine and Venlafaxine can be added with particular benefit to patients who suffer from symptoms of fatigue and anxiety.
Pyridostigmine may improve tachycardia in POTS patients (Raj et al., 2005; Kanjwal et al., 2011). However, Pyridostigmine also increases bowel motility. Therefore, although it does not have adverse reactions specific to pregnancy, it is not tolerated in many patients due to multiple GI side effects (Kanjwal et al., 2011)
IV fluids - infusing 1 L of normal saline over 1-2 hours weekly may be helpful in refractory cases. It can then be increased or decreased on an individual basis as needed. If IV Fluids are used, it is recommended that it be done on an outpatient basis and to minimize the risk of infections and thrombosis, the use of central lines and infusion ports should be avoided. (Ruzieh, Grubb, December 2018)
Bedrest - partial bedrest may be recommended in patients with recurring syncope or falls.
There are no special considerations for vaginal delivery vs C-section. Both can be carried out successfully without complications. The choice for what is used should be made solely based on obstetrics. (Glatter et al., 2005; Powless et al., 2010; Blitshteyn et al., 2012; Lide, Haeri 2015) No evidence was found to favor one method or type of anesthesia used - regional vs general vs none. Also, an epidural injection was found to be safe and didn’t trigger POTS symptoms. The birth method or anesthesia used should not be influenced by a POTS diagnosis. It should be solely based on Obstetrician’s recommendations. (Corbett et al., 2006)
Some women experience worsening of symptoms and others find rapid improvement of symptoms after delivery but the majority of women remain stable. Breastfeeding is safe and encouraged, however, caution should be taken if medications are being used to treat POTS symptoms during pregnancy and potentially transfer to breast milk. (Bernal et al., 2016)
According to current research, there is no long term impact of pregnancy on POTS and POTS does not pose an increased risk for pregnancy or birth. HUTT testing is safe during pregnancy.
It is recommended that patients with debilitating POTS symptoms consult with a high-risk obstetrician, and any obstetrician treating a POTS patient should take the time to learn about POTS and dysautonomia in general as well as the medications used to treat it.
Special note for POTS patients with EDS: Pregnant women living with EDS and POTS are at a higher risk for maternal and fetal complications. Therefore these patients require more monitoring and closer follow up (Jones, Ng 208; Sorokin et al., 1994)
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Ruzieh Mohammed, Grubb Blair P., Overview of the management of Postural Orthostatic Tachycardia Syndrome in pregnant patients, Autonomic Neuroscience, Vol 215, Full Text https://www.sciencedirect.com/science/article/pii/S1566070217303442