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Information Resources

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Below are articles full of information designed to help people living with dysautonomia.  There are guides  written to help your family and friends understand your illness and help you all learn to live with it together. The POTS Guide for kids was created to be used as a handout for your child's teacher, coach, tutor, school nurse, their best friend's mom, or anyone else that may be responsible for your child when you are not there. Many guides include links to pdfs to make it easier to print, email or share.  The Patient's Guide is to help patients with tips to prepare for a visit to the ER or a new medical provider. The Information Sheets are designed to help you remember the information you should have with you.  The Life with Chronic Illness section includes links to newsletter articles on a variety of subjects about the issues faced for people with chronic illness. 
UNDERSTANDING DYSAUTONOMIA
A guide for family and friends
POTS GUIDE - for the family of children & teens living with POTS
I know a kid who has POTS  
Hydration and POTS
PATIENT'S GUIDE
Preparing for the ER and new medical visits
LIFE WITH CHRONIC ILLNESS
Managing and enjoying life - surviving guilty feelings, service dogs, dehydration,  beat the heat, visiting national parks.
Thriving with chronic illness - traveling, adaptive devices, technology, hyperPOTS patient story, finding balance.
 
edriscoll
Paths and Stories
After reading an article, use your browser's back button to easily return to the Table of Contents on this page.
Mental Health and Chronic Illness by Hallie MacDonald
Lefty-Loosey, Righty-Tighty: The Autonomic Nervous System, Blood Vessels and POTS by Susanne Rimm
Meet the Member: Claire's Story by Chelsea Goldstein
The Story Booth Project: Sharing the Stories of Patients and Caregivers by Ellen Driscoll
Meet DINET's Board of Directors
Updated: Research and News about Dysautonomia and Related Illnesses
Updated: Open Recruitment Studies
hallie
By Hallie MacDonald
Q: Statistics report an estimate of 25 to 33% of people living with chronic illness also suffering from depression. What is the difference between situational or stress-related depression and chronic or major depression? Is one type more common for people with chronic illness?
A. First, it is essential to understand the differences between different types of depression. Clinical depression (also called Major Depressive Disorder) often refers to one or more serious depressive disorders that can occur with or without the person experiencing a specific stressor. The symptoms are generally more severe or last far longer in comparison to situational depression, and they usually will interfere with the person’s ability to function in their day to day life (work, school, family responsibilities,etc.). Common examples of clinical depression are:
Dysthymia - persistent depressive disorder - a low-grade depression lasting two or more years. Seasonal Affective Disorder (SAD) - depression related to the reduction in natural light usually begins at the start of the fall/winter seasons. Postpartum depression - can be debilitating and has various degrees of severity following pregnancy and giving birth. Bipolar depressive disorder - the person experiences alternating periods of elation and depression.   A person experiencing a major depressive disorder will generally have five or more of the following symptoms and requires a medical diagnosis:
Sleep difficulties, changes to sleep patterns, including waking unusually early without desire or need. The inability to feel joy or take pleasure in most or all daily activities. Noticeable agitation or unusual slow movements - extreme lethargy Feelings of worthlessness, self-loathing or self-hatred Excessive feelings of guilt Suicidal thoughts or beliefs that the world/family may be better off without you. Significant weight loss or gain in a month without intention (5% or more of body weight) In children - increased irritability Commonly, major depressive disorders require medication as well as therapy to manage symptoms and learn coping skills. Clinical depression can be severe and requires the intervention of a medical professional. If you believe you or a loved one may be experiencing symptoms of clinical depression, contact a PCP or mental health professional for diagnosis and treatment.
Situational depression refers to symptoms of depression that are related to one or more specific stressors the person is experiencing. Situational depression is common after significant life changes such as divorce, death, job loss, etc.  
Situational depression can cause emotional and behavioral symptoms that can look and feel very much like clinical depression. However, it is important to remember that it is reasonable to feel sad or anxious when life circumstances are difficult or overwhelming. The treatment for situational depression is supportive, such as seeking out organizations or support services that may help by giving and receiving support from others who have experienced similar stressors, such as; grief support groups or chronic illness support services.  
Most people who are living with chronic illness experience situational depression or stress at different times during their lives. It is normal and expected. There is a period of mourning and feelings of grief as they adjust to the parts of their life that may be lost and while they adapt to a new self-image. This period of mourning is different for everyone. Finding a support group for people with related physical symptoms or similar disabilities is an essential tool because it offers the opportunity to feel validated and supported as well as to give validation and support to others in a similar situation. Just as crucial for people with a chronic illness is to develop coping skills to help with the everyday stress inherent in dealing with pain and illness regularly. Finding new activities or new ways to enjoy old activities can be an effective de-stressor, as well as continuing to connect with family and friends.
It is critical to recognize that more than one type of depression can be present at any time in a person’s life. Therefore anyone experiencing symptoms of depression must be screened by a medical professional. Suicidal thoughts experienced by you or a loved one requires immediate attention, contact the National Suicide Prevention Association at www.suicidepreventionlifeline.org or call the 24/7 hotline at 1-800-273-8255
Resource: National Association of Mental Illness https://www.nami.org/Blogs/NAMI-Blog/April-2017/Situational-Symptoms-or-Serious-Depression-What-s

Q: People living with dysautonomia disorders are commonly treated with BP medications, many of them with depression as a side-effect. How can medication-induced depression be treated? Is the treatment different than other types of depression? How can you tell if the depression is a side-effect or a symptom of the illness or a condition unrelated to dysautonomia?
A. Determining whether the symptoms are a side effect of the medication or are coming from another source requires an in-depth patient history. A physical exam and lab findings confirm the amount of medication in the bloodstream, as well as any additional intoxicants that may be present.  
There is no specific treatment for depressive feelings brought on by medication use, other than switching to another medication. Usually, the side effects of most medications lessen or disappear as the body acclimates to it. If there is no improvement, then an alternative treatment will be needed. If the symptoms persist after four weeks, another source for the depression needs consideration.
Resource:  https://www.verywellmind.com/drugs-that-can-cause-depression-1067458
Q: Anxiety is also prevalent with dysautonomia patients because so many of the symptoms can cause fear - high HR and palpitations, chest pain, fainting or near-fainting, etc. Anxiety can exacerbate the symptoms. Are there techniques that can help a person control their anxiety, or is medication necessary?
A. Many natural techniques can help reduce anxiety.
Practice deep breathing techniques. Take a deep breath in through the nose (breath in as slowly as possible), then breathe out steady and slow through pursed lips (position your lips as though you are going to whistle). It is important to keep the inhale and exhale even (counting helps) to avoid over-breathing that can cause hyperventilation.  It will feel awkward at first, but if you practice, it will be a coping mechanism that is ready for you when you need it most. This technique also has the added benefit of being the most effective way to re-oxygenate your body and prevent hyperventilation.  Add a time-out to your day - listen to music, meditate, practice visualization, yoga if you can, do light exercise (whatever you can even from a sitting position). Develop preventative habits. Eating well-balanced nutritious meals, avoid excessive sugars, and caffeine as both can add to anxious feelings. Give yourself a consistent sleep pattern by forming rituals that help you relax before going to bed.   Find reasons to laugh. Rent a comedy, stream stand-up shows by comedians, hang out with a friend who likes to laugh Practice acceptance - you can’t control your illness, but you can control how you respond to it. Accepting what you can and can not do and finding ways to feel fulfilled and useful will add to your overall sense of well-being and reduce the feelings of anxiety. Get involved. Reach out to your support network when you are feeling anxious about your illness. Explore what you are feeling and see if you can recognize a pattern or see triggers. Volunteer with the network if possible or find other volunteer opportunities. There are many opportunities to volunteer online. Getting out of your head is one of the best ways to deal with feelings of anxiety.  Medication is not usually necessary, and for people living with chronic illness, drugs for anxiety may be counterproductive or may not be possible. Consult with your physician if you feel you need medication.
Resource:  Anxiety and Depression Association of America   https://adaa.org/tips
Q: Dysautonomia, particularly POTS, is caused by a dysfunction in the autonomic nervous system, specifically the Sympathetic Nervous System (SNS) responsible for the fight or flight response in the body (the release of norepinephrine). What effect, if any, does this have on a person’s anxiety level or in causing depression?
A. Norepinephrine is a neurotransmitter associated with the fight or flight mechanism in the body and feelings of anxiety in the nervous system. Because dysautonomia creates an instability in the SNS, a person’s fight or flight response activates without an external need for that response. This instability is at the core of POTS symptoms. Physicians not familiar with the disorder can frequently assume the symptoms described are a result of the person’s inability to appropriately deal with anxiety or are living with depression. 
Resource:  Science Direct  Journal Neuron Volume 87
"Norepinephrine and Corticotropin-Releasing Hormone: Partners in the Neural Circuits that Underpin Stress and Anxiety" by  Yaijie Sun, Sarah Hunt, Panka Sah
https://www.sciencedirect.com/science/article/pii/S0896627315006443
Q: Chronic illness requires the person to adapt to a new sense of self and to establish a new “normal” for their life. For example, a person's professional identity may need to change if they can no longer work. A person's role within their family as the "go-to" person may also need to change if they now need help from their family instead. How can family and friends help support the chronically ill person making this transition? 
A. Loved ones of a chronically ill person should encourage or help (if wanted) the person find a support group or mental health professional that they can talk to without feelings of guilt or the need to censor their feelings or thoughts. Recognize that there are many parts of your loved one's adjustment that you will not be able to help directly. Be available and open to what they need and avoid telling them what they “should” feel. In a patient survey that DINET offered a few years back, members expressed what helped or hurt them in their encounters with family and friends. The number one thing cited as “help” was listening. The second helpful thing was believing the person about how they feel. Example, on Tuesday, your family member says they are too sick to get out of bed. But then later that week, they say they feel well enough to go out. Avoid questioning or discouraging their decision.  
Dysautonomia is a disorder with a wide range of symptoms that can change quickly. Believing what they say and letting the person take the lead is empowering and validating.
The top two things that “hurt” patient encounters with family and friends were dismissive language such as “you don't look sick” or “think positive” and being told what they feel or should feel, such as “don’t think that way” or “you should feel grateful that things aren’t worse.” 
Take the lead from the person. If they miss what they used to do for work, help them explore ways to use those skills in another capacity. Even the most physically active careers have skills that can translate to other uses without the physicality of the former activity. For example, a person who used to play sports may find a place for themselves in Special Olympics or through coaching. A business person may be able to volunteer with an organization in need of their business skills but without the demands of full time work. 
In some cases, people find it too depressing to be on the fringes of what they used to do. In that case, help your loved one explore new hobbies or disciplines. Perhaps they aren’t up to attending classes, but you may suggest or help them find an online course they would find interesting. There may be new hobbies that you can do with the person. Whatever the action, be sure it is something the person wants to do or is receptive to your help. There is nothing wrong with making a suggestion but give the person the respect of truly hearing what they need from you.
People make the transition in their own time. There is no right or wrong way to go through it. You may have feelings of frustration that your loved one isn’t moving forward quickly enough or won’t let you cheer them up in the ways you think they should happily accept. Try and remember that this is their journey, and they have to find their way to their new “normal.” If you are a caretaker or close family member, and you are having feelings of sadness or anxiety about your loved one’s illness, seek out outlets for yourself. The chronically ill person can’t absorb your feelings about this transition. You can be honest while still being careful not to give responsibility to the sick person to make you feel better.
Resource:  Help Guide:  "Living well with a disability
https://www.helpguide.org/articles/healthy-living/living-well-with-a-disability.htm
 
* Coming up:  Part Two of Mental Health and Chronic Illness.
If you are not receiving our newsletters and would like to, please become a DINET member https://www.dinet.org/register
or sign up through Facebook https://www.facebook.com/DysautonomiaInformationNetwork/app/141428856257/ 
Newsletters are published quarterly.
 
 
Pistol
By Susanne Rimm
Many symptoms experienced by people living with POTS and other dysautonomias are related to a miscommunication within the Autonomic Nervous System) (ANS) between the sympathetic and the parasympathetic systems. The ANS controls the pressure inside our blood vessels.  This complicated process involves many aspects of anatomy ( heart and vasculature ), hormones, chemicals, and nerves. 
Efficient circulation is necessary to provide the body systems with adequate oxygen and nutrition to perform their specific tasks. Some organs or parts of the body need a constant rate of circulation ( i.e., the brain ), and some need more at certain times ( i.e., the digestive tract ). Maintaining and directing blood flow within the body is dependent on the harmonious communication between the sympathetic and parasympathetic nervous systems. These systems influence blood flow by widening the blood vessels (vasodilation) or tightening the vessels (vasoconstriction).   Vasodilation lowers the pressure within the vessels vs. vasoconstriction which raises the pressure. These systems respond differently to various triggers within the body ( endogenous ) and from outside of the body ( exogenous ). 
What are blood vessels?
Blood vessels are precisely that – vessels that transport blood. Anatomically they are tubular structures with an inner lining (endothelium), which is surrounded by connective tissue. They contain smooth muscle cells that respond to small nerve fibers directly connected to the ANS. Arteries carry oxygenated blood from the heart through the body, and veins return the blood through the lungs to the heart. 
Vasodilation
Widening of blood vessels increases blood flow, lowers blood pressure, and occurs when the smooth muscle cells within the walls relax. This can occur in response to endogenous factors such as hormones, chemicals, or nerve impulses. An increase in carbon dioxide, potassium ions, hydrogen ions, and adenosine can all lead to vasodilation. Another cause is the release of the hormone epinephrine caused by the activation of beta-2 receptors in the muscles of the blood vessels. Other causes for vasodilation are the release of nitrous oxide ( a substance released by certain nerves during inflammation ) as well as the release of histamine.  (1,2)
Exogenous factors that can cause vasodilation are heat, certain foods, or beverages (e.g. alcohol ) or light and noises from the environment. Pharmaceuticals can also cause vasodilation and can be used to treat certain conditions like angina or hypertension.  Vasodilation can lead to hot, flushed skin by drawing circulation to the periphery and away from the core. Other symptoms include sweating, tachycardia, nausea, dizziness, vision and hearing changes, headaches, and more. (1,2)
Vasoconstriction 
Narrowing of blood vessels occurs when the smooth muscles of the vessel walls constrict, resulting in restricted blood flow.  This increase in vascular resistance raises systemic blood pressure and causes a localized reduction in blood flow. The general mechanism leading to vasoconstriction is an increased concentration of calcium ions in the smooth muscle cells.  This concentration occurs because of an increase in epinephrine or activation of the sympathetic nervous system through the release of norepinephrine. These neurotransmitters interact with adrenergic receptors. 
Again, vasoconstriction can be caused by endogenous and exogenous factors. Examples for exogenous causes are exposure to severe cold temperatures, which cause the cutaneous vessels to constrict in an attempt to reroute the circulating blood to the core. This constriction is what causes the skin to become pale in cold weather as less blood reaches the surface.  Medications such as antihistamines, amphetamines, or stimulants are vasoconstrictors. They can be used to increase blood pressure or reduce local blood flow.     
The most crucial endogenous trigger for vasoconstriction is the normal attempt of the ANS to correct the sudden drop in blood pressure that occurs when standing to avert orthostatic hypotension.  A critical trigger for vasoconstriction is the narrowing of blood vessels necessary during sudden hemorrhage. As the body attempts to stop or limit blood loss, circulation is diverted towards vital organs and away from the source of the bleeding.  The more common symptoms of vasoconstriction are tremors, cold extremities, paleness or bluish color skin, tachycardia, palpitations, chest pains, and more. (3)                                                                              
Autonomic Tone
Autonomic Tone is the balance of sympathetic and parasympathetic activity. It is regulated by the hypothalamus ( the primary control of the ANS ). In healthy individuals, the autonomic tone is responsible for restoring homeostasis, the body's ability to maintain a constant internal environment. In dysautonomia, this balance is disturbed, and one or the other branch dominates, causing an overcompensation or withdrawal of the sympathetic or parasympathetic activity.  (4) 
How it all ties together
Since there are so many different ways that the pressure within the blood vessels can be influenced, it is no surprise that a malfunction can have similar symptoms yet completely different causes. Here are a few examples of why different types of dysautonomia cause inappropriate vasodilation or vasoconstriction. (5,6)
Neuropathy
This type of dysautonomia is thought to be caused by the partial denervation of the sympathetic nerves of the lower limbs. Since the smooth muscle cells of the vascular walls respond to the peripheral small fiber nerve endings of the ANS, this denervation may lead to inadequate vasoconstriction. Therefore,  the ANS is unable to prevent or correct blood pooling, leading to a drop in BP and a compensatory increase in heart rate (HR) in response to orthostasis. A study by Jacob et al. showed that patients with neuropathic POTS had normal neuronal norepinephrine release in their arms but less norepinephrine in their lower body.    Meaning there was less sympathetic activation in the blood vessels of the legs. A secondary form of neuropathic dysautonomia occurs in diabetic or alcoholic neuropathy resulting in ineffective blood pressure control via the vascular innervation. (5,6)
Ehler-Danlos Syndrome
Ehlers-Danlos-Syndrome (EDS), or joint hypermobility syndrome, can cause abnormal connective tissue in the vessel walls, which permits the veins to dilate excessively. This dilation causes blood pooling in the lower limbs and a  decrease in blood pressure. Some of these patients also display alpha and beta-adrenergic hyper-responsiveness. (6) 
Mast-Cell Activation
MCAD results in the release of the vasodilator histamine and other mast cell mediators, which may contribute to POTS. The excessive vasodilation caused by this reaction can cause many symptoms consistent with POTS and marked by flushing episodes. (6)
Hyperadrenergic POTS  (HyperPOTS)     
This type of dysautonomia is characterized by an increased level of the neurotransmitter norepinephrine, a vasoconstrictor.  This can occur in several ways: 
Sympathetic overcompensation - Norepinephrine gets dumped in response to a drop in BP, possibly due to vasodilation Parasympathetic withdrawal - the ANS fails to counteract sympathetic activation  or the inability to clear excess NE out of the synaptic cleft.  Hyperadrenergic POTS is often accompanied by high BP, high HR, and symptoms of sudden and extreme vasoconstriction brought on by the "fight-or-flight" response. This can lead to a loss of circulation to the brain and result in syncope or seizures in severe cases. (7)
Neurocardiogenic syncope
The conscious state depends on adequate cerebral blood flow, which is auto-regulated by the ANS. Normal orthostasis is maintained by a brief increase in the sympathetic tone and maintenance of BP.  In neurocardiogenic syncope, there is an inappropriate decrease in sympathetic tone followed by a compensatory increase in parasympathetic tone. This fluctuation leads to a sudden drop in both BP and HR due to vasodilation, often accompanied by a sudden loss of consciousness due to a temporary loss of cerebral circulation. The causes include orthostasis, hot temperature, and emotional triggers.
This article is a brief overview of the intricate and complicated correlation between the ANS and our cardio-vascular system.  Hopefully, this aids in a better understanding of why we experience the symptoms typically experienced with POTS and other forms of dysautonomia. (8)
Sources:
https://biologydictionary.net/vasodilation/ https://healthfully.com/how-do-blood-vessels-constrict-dilate-4240725.html https://en.wikipedia.org/wiki/Vasoconstriction https://graduateway.com/chapter-15-the-autonomic-nervous-system-4-essay/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/  https://www.dinet.org/info/pots/what-causes-pots-r98/ https://www.dinet.org/info/pots/hyperadrenergic-pots-hyperpots-an-overview-of-a-pots-subtype-r220/ https://www.dinet.org/info/ncs/neurocardiogenic-syncope-info-r104/  
Goldstec
Claire is a thirty-six-year-old mom, with a  refreshingly real disposition, shares her experiences of living with POTS. Her dysautonomia is accompanied by gastroparesis, irritable bowel syndrome, hypermobile Ehler-Danlos Syndrome, polycystic ovary syndrome (PCOS), and endometriosis among others. She worked as a Certified Dental Assistant for ten years before she resigned due to disability.  

Though Claire recalls she has probably had POTS and EDS for many years, she officially sought a diagnosis at age twenty-eight. At the time, she was working full-time, married, and preparing to start a family. While she has always had some symptoms, she attributed them to her PCOS and endometriosis. However, she knew there must be another explanation when her symptoms flared during her pregnancy in 2010. Most of that year was filled with debilitating pain, migraines, unrelenting morning sickness, and both erratic heart rate and blood pressure. While she felt something was not right, her doctors dismissed it as typical pregnancy symptoms. She had a difficult nineteen-hour labor  followed by several months of caring for a newborn, and trying to care for herself at the same time. By this time, she knew her symptoms were not typical of a pregnancy, nor postpartum depression, and actively began to seek answers. 
In the next four and a half years, she persevered in her search for answers, and saw nearly fifty doctors.  Most of these doctors told her she was “too young” or “too pretty” to be so sick. Some argued her symptoms were due to the stress of being a new mom. Even some friends and professionals questioned her experiences, believing she was not sick enough to seek help. She inevitably felt some sense of defeat after years of dismissal, and it was then that a twist of fate led Claire to a diagnosis – a close friend spoke with a doctor about her case, and the doctor wanted to see Claire. During their visit he spoke the magic words that we all long to hear: “I believe you, you are not crazy, and you are not alone.” Her search continued for several more months during which time she also discovered her home was filled with black mold. She was finally diagnosed with POTS and EDS at age thirty-two. 
After such a long and harrowing experience, Claire was elated to have a diagnosis. She felt she could finally start treating her conditions,  as well as receive belated empathy and validation from professionals. While her diagnosis was empowering and encouraging, Claire astutely articulates that we must remember that a diagnosis does not always change the way people with dysautonomia are treated. Even with a diagnosis, there is not clear and simple treatment for dysautonomia. Additionally, many professionals still do not understand the condition and, at best, provide little support while, at worst, continue to minimize and mock the experiences of patients. This roller coaster is familiar to many of us – we desperately seek answers for a smattering of life-altering symptoms. Then we finally receive them, and we are consumed by relief. However, then we must endure an entirely different emotional process of realizing the complexities of dysautonomia treatment and the lack of understanding about the condition in our society. 
Today, Claire still struggles with her dysautonomia. She is in her mid-thirties and uses a shower chair, walker, cane, accessible parking, and occasionally a wheelchair. She used to love camping, but has had difficulty getting outdoors even with adaptations. One of the most thought-provoking points that Claire makes is that there seems to be a stereotypical success story of individuals who are expected to “overcome” illness by running marathons and raising a lot of money. According to that stereotype, many of us feel  'less than' if we don’t reach these often unrealistic heights. I would argue that this stereotype needs to be challenged. On the contrary, Claire is a refreshing and real inspiration through her courage to share her story even when she does not feel she has fully figured out her path. She reminds us that it is human to experience hope, despair, frustration, and inspiration all at once. She shows us that it is okay to be complex because if we all fit the cliché inspiration success stories we would lose the diverse, empathetic, creative, and intuitive individuals who make up our community. I believe that many of these qualities are cultivated among individuals living with dysautonomia specifically because of the unpredictable struggles of their daily lives. Claire teaches us that being real about where we are each day is, perhaps, the most inspiring story of all. 

*If you would like your story to be considered for a future "Meet the Member" article, please reach out to Chelsea at chelsea.goldstein@dinet.org
 
edriscoll

DINET Newsletters

By edriscoll, in Newsletters,

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 webmaster@dinet.org
Newsletters:
February 2020 Newsletter - Paths & Stories
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
DinetSeptember2016_FINAL.pdf
2016_June_Newsletter.pdf
 
2015_Summer_Newsletter.pdf  
2015_Spring_Newsletter.pdf
2015_Winter_Newsletter.pdf 
2014_Summer_Newsletter[1].pdf
2014_Spring_Dinet_Newsletter[2].pdf
2014_Fall_Newsletter[1].pdf
edriscoll
Newsletter Content
Patient Advocates by Reanna Mathis
Compression Stockings by Mona Hussein
Meet the member: Kat's story by Chelsea Goldstein
Medical Q & A, answers provided by DINET's Medical Advisory Team
Dysautonomia Research
Information Patient Guides
Looking Back and Looking Forward - 2017 to 2018
 
 
 
 
 
 
 
 
 
 
 
 
 
edriscoll

Pure Autonomic Failure (PAF)

By edriscoll, in PAF,

Pure Autonomic Failure (PAF)
A degenerative disease of the peripheral nervous system characterized by a marked fall in blood pressure upon standing (orthostatic hypotension). The orthostatic hypotension leads to symptoms associated with cerebral hypoperfusion, such as dizziness, fainting, visual disturbances and neck pain (Mathias, Mallipeddi & Bleasdale-Barr, 1999). Other symptoms such as chest pain, fatigue and sexual dysfunction may also occur. Symptoms are worse when standing and are sometimes relieved by sitting or lying flat.
Our web site provides links in our Link Directory to pure autonomic failure resources on the Internet.
References 
Mathias, C. J., Mallipeddi, R. and Bleasdale-Barr, K. (1999). Symptoms associated with orthostatic hypotension in pure autonomic failure and multiple system atrophy. Journal of Neurology, 246, (10), 893-898.
edriscoll
Otherwise referred to:  Neurally Mediated Syncope, Neurally Mediated Hypotension, Vasovagal Syncope
This disorder is characterized by an episodic fall in blood pressure and/or heart rate that results in fainting (Robertson, 2002). The disorder occurs intermittently, with patients sometimes reporting good health between episodes.
Our web site provides general information on NCS, and also explores its symptoms, mechanisms, diagnosis and treatment.   More information about NCS can be found here - https://www.dinet.org/info/ncs/neurocardiogenic-syncope-info-r104/   We also include links to more web resources in our Link Directory.
 
Reference
Robertson, D. (2002, July). Drug therapy. National Dysautonomia Research Foundation Patient Conference. Washington, D.C.
MRoseLombardi

Dehydration

By MRoseLombardi, in Newsletters,

by Margaret Rose Lombardi
Being adequately hydrated isn’t just an important part of physical health for people with POTS and other forms of dysautonomia.  Without proper hydration, anyone's body can experience severe damage and even death. Knowing the signs and symptoms of dehydration for yourself and your family is critical during the summer months.
Feeling thirsty is the least reliable way to tell if a person has enough fluid in their body.  Many people don’t feel thirsty until they are already dehydrated.
Adults
Dizziness Extreme thirst Not urinating at all, urinating infrequently, or urinating very small amounts Dark colored urine with a strong odor Fatigue Feeling confused or acting “spaced out” In Babies and Small Children
Dry mouth and tongue - lips sticking together No urination or wet diapers for three hours Extreme tiredness or irritability Eyes and cheeks looking “hollowed out” or “sunken” Indentation of the soft spot on top of the head (infants) For both children and adults, dehydration is possible in hot weather, during exercise, and during illnesses, particularly if the person has diarrhea, vomiting or fever.  
Dehydration can cause extreme damage to the healthiest of people, including:
Heat stroke, cramps, and heat exhaustion Urinary and kidney damage - including kidney failure Seizures - potassium and sodium (electrolytes) can become too low causing seizures.  Electrolyte imbalance can also cause involuntary muscle contractions and unconsciousness. Hypovolemic Shock - low blood volume causes a drop in BP and the amount of O2 in the body. Why does dehydration affect POTS patients more than the average person?
For POTS and many other dysautonomia patients, the mechanism that regulates BP and HR when a person stands up is dysfunctional (BP goes down, HR goes up).  Water intake counteracts this response, helping the symptom that leads to dizziness, pre-syncope, and syncope. Water intake can help to  minimize BP’s reaction to standing in most patients.
In understanding the effect increased water intake can have on the symptoms associated with POTS and Dysautonomia, it is easy to understand how drinking just an average amount of water isn't enough and won't necessarily prevent symptoms.
It is extremely important, truly critical to understand that although the results of dehydration will be similar for POTS patients as it is for the healthy person, the steps to becoming dehydrated should not be underestimated. Excessive sweating is another of the functions of the autonomic nervous system that is dysfunctional in a person living with dysautonomia.  Because of this, a person with these disorders can dehydrate regardless of the outside temperature. Couple this symptom with the body’s reaction to high summer heat and a potentially dangerous picture emerges.
The recommended way most POTS patients protect themselves from dehydration is by maintaining a combination of salt intake and electrolyte-rich drinks - all under the supervision of their physician.  This is a crucial part of management that can’t be ignored, especially during the lazy, hazy days of summer.
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