I thought living with a Vestibular dysfunction was hard enough, but living with Pots! well, so far ever Doctor when they look at my diagnosis, they just look sad and say there sorry. The most difficult part is not knowing what’s in store for me, and the Doctors can’t tell you. The fact is they don’t know.
Pots is very rare, I feel like I have always been the rare one, never got the flu, normal colds, always the strange diagnosis’s. The ability to function as normal is gone, my energy has been depleted, my nausea increased, headache pressure extreme, Legs weaker, shortness of breath, chest discomfort, Trying to not look at is as a my health declining, but a new challenge, researching my illness and treatment centers. Try to be proactive, find out what others with my disease have found what things have improved there life.
I believe in my spirit guiding me in the right direction to find maybe not a cure for my disease but a easier way to live with it.
Postural orthostatic tachycardia syndrome (POTS) is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom of OI is lightheadedness or fainting. In POTS, the lightheadedness or fainting is also accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising. The faintness or lightheadedness of POTS are relieved by lying down again. Anyone at any age can develop POTS, but the majority of individuals affected (between 75 and 80 percent) are women between the ages of 15 to 50 years of age. Some women report an increase in episodes of POTS right before their menstrual periods. POTS often begins after a pregnancy, major surgery, trauma, or a viral illness. It may make individuals unable to exercise because the activity brings on fainting spells or dizziness.
Doctors aren’t sure yet what causes the reduced return of blood to the heart that occurs in OI, or why the heart begins to beat so rapidly in POTS. Current thinking is that there are a number of mechanisms. Some individuals have peripheral denervation (neuropathic POTS); some have symptoms that are due to sustained or parosyxmal overactivity of the sympathetic nervous system (hyperadrenergic POTS); and many individuals with POTS have significant deconditioning.
Is there any treatment?
Therapies for POTS are targeted at relieving low blood volume or regulating circulatory problems that could be causing the disorder. No single treatment has been found to be effect for all. A number of drugs seem to be effective in the short term. Whether they help in long term is uncertain. Simple interventions such as adding extra salt to the diet and attention to adequate fluid intake are often effective. The drugs fludrocortisone (for those on a high salt diet) and midodrine in low doses are often used to increase blood volume and narrow blood vessels. Drinking 16 ounces of water (2 glassfuls) before getting up can also help raise blood pressure. Some individuals are helped by beta receptor blocking agents. There is some evidence that an exercise program can gradually improve orthostatic tolerance.
What is the prognosis?
POTS may follow a relapsing-remitting course, in which symptoms come and go, for years. In most cases (approximately 80 percent), an individual with POTS improves to some degree and becomes functional, although some residual symptoms are common.
What research is being done?
The National Institute of Neurological Disorders and Stroke (NINDS) and other Institutes of the National Institutes of Health (NIH) conduct research related to POTS and support additional research through grants to major research institutions across the country. Much of this research focuses on finding better ways to prevent, treat, and ultimately cure disorders such as POTS. NINDS-funded researchers are investigating if low levels of the hormone aldosterone contribute to low blood volume in individuals with POTS, and if high levels of angiotensin II, a peptide that helps regulate blood volume, leads to decreased adrenal sensitivity. Other NINDS-funded research is investigating the hypothesis that POTS is a syndrome of different subtypes, with different underlying mechanisms. Additionally, the NINDS funds the Autonomic Rare Diseases Consortium to further understand disorders such as orthostatic hypotension and hopefully alter the course of disease.
NIH Patient Recruitment for Postural Tachycardia Syndrome Clinical Trials
|National Dysautonomia Research Foundation
P.O. Box 301
Red Wing, MN 55066-0301
|Dysautonomia Youth Network of America, Inc.
1301 Greengate Court
Waldorf, MD 20601
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892
NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history.
All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated.
Last Modified December 2, 2015
Invisible illnesses are just as it sounds invisible, You can’t see them, no obvious symptoms to the naked eye. That being said, living with a invisible illness is the hardest thing I have ever had to do. Not only living with the daily symptoms, but living with the unknown. Will I be able to attend the function on Monday? Will I be able to drive to my Doctor’s appointment on Tuesday? What if I get lost? What if I have a attack? What If I have a drop attack? I always carry my medication with me and a bottle of water as if it were a security blanket. Is it really going to help in this situation? No , but it makes me feel better. I only will allow my self to drive 3 or so miles and I have to feel better than normal to drive, so its not on a regular basis, I have to have some one drive me places, which makes me feel bad. My sensory system is in such overload, lights, patterns on carpets, wallpaper, crazy bright colors really bother me. I can’t handle music even though I am deaf in one ear and going deaf in the other, it causes confusion in my brain. A lot of people in one area cause confusion. You loose friends and your co-workers or family members question your illness? I have never actually wanted anyone to have my disease which is autoimmune disease, Vestibular dysfunction, deafness, fibromyalgsia, extreme fatigue. But at the same time If they could experience it for one day, maybe they would understand. Invisible illnesses are not easy to diagnose or treat and most are not curable, I use to hope this MRI is going to show a tumor that can be removed and I will have my life back and that is just not the case, I am meditating which can be a challenge in itself, with all the noise in my head and spinning, eye pain, ear pain. It’s depressing, but I had to take a new approach to my disease and not let it define me, also had to think of this as a gift! Am I crazy? Yes I look at this as a gift to understand what others are going through and trying to help them through there journey. I know it sounds strange, Yes I wish I was healthy but until a miracle happens I can help others. If any of you are dealing with this world, talk to me, I can try to help you if not support you in your journey.
Have a wonderful Saturday, Kelly
What is Dysautonomia?
Dysautonomia is a dysfunction of the autonomic nervous system, or ANS. The autonomic nervous system controls all those “automatic” body functions you don’t have to think about, like heart rate, blood pressure, temperature, digestion, respiration and perspiration. There are several types of dysautonomia, including postural orthostatic tachycardia syndrome (“POTS”), which I have. I may use POTS or dysautonomia to describe my condition in this blog, since POTS is a form of dysautonomia. But not everyone who has dysautonomia has POTS.
As I only have POTS, this blog will primarily focus on that form of dysautonomia. For information on the other types, visit this website.
What is POTS?
As mentioned above, POTS stands for postural orthostatic tachycardia syndrome. If you break it down, postural = position of the body, orthostatic = standing upright, tachycardia = fast heart rate, syndrome = collection of symptoms. Therefore, POTS literally means fast heart rate while standing. POTS is characterized by an increase in heart rate of 30 beats per minute (bpm) or more upon standing, and/or a heart rate above 120bpm upon standing.
When we stand up, gravity pulls blood towards our feet. Normal bodies respond by making slight adjustments to keep the blood pumping throughout the body. However, for those with POTS, the body has a difficult time counteracting gravity, and as a result, our heart rate increases drastically and the ANS has difficulty controlling blood flow. This results in many seemingly unrelated symptoms.
What are the symptoms of POTS?
As mentioned above, POTS can cause an array of symptoms, many of which seem unrelated at first. This is why POTS sufferers may have difficulty in getting diagnosed. Some of the common symptoms of POTS are:
- tachycardia (fast heart rate)
- digestive problems
- excessive thirst
- frequent urination
- shortness of breath/difficulty breathing
- difficulty regulating body temperature
- light/sound/vibration sensitivity
- blood pooling in the extremities
- visual disturbances
- exercise intolerance
- chest pain
- heart palpitations
- brain fog/cognitive difficulties
- increased adrenaline
How is POTS diagnosed?
POTS is typically diagnosed by a tilt table test. During a tilt table test, the patient is strapped to a table in the supine position. The patient is hooked up to monitors so heart rate and blood pressure can be monitored throughout the test. Once the physician begins the test, the table tilts vertically until the table is about 70% vertical. As the patient is strapped to the table, s/he will not fall and risk injury if fainting occurs.
Sounds like a fun ride, right? However, for someone with POTS, it is an extremely uncomfortable test.
Once the table has been tilted upright, the patient describes any symptoms to the physician. Heart rate and blood pressure are monitored and recorded to detect any changes. The test usually lasts 30-40 minutes, or until the patient faints. If the patient’s heart rate increases by 30bpm or exceeds 120bpm upon tilt of the table, it is determined he or she has POTS.
Is there a cure for POTS?
No, currently there is no cure for POTS. The condition is managed by treating the symptoms.
What causes POTS?
Teenagers who have POTS develop the condition around the time of puberty, thought to be caused by rapid growth. Some develop POTS secondary to another condition, such as Ehlers-Danlos Syndrome (EDS). Others develop POTS after sustaining trauma, such as a car accident, surgery, etc. Viruses or prolonged bed rest can also lead to POTS. It is suspected that my case of POTS resulted from a virus I picked up while studying in the Czech Republic, although there is no way to confirm that.
Does POTS ever go away?
Teenagers or young adults who develop POTS during their growing years will likely eventually “outgrow” POTS. For others it may be permanent.
Who can get POTS?
POTS patients are typically women (4 out of every 5 POTS patients) of child-bearing age. POTS can be genetic and passed from mother to child. It is estimated that 1 out of every 100 teenagers has POTS. As a comparison, the Autism Society reports that 1 in every 88 children has autism. So, while information about POTS may be rare, the condition itself is far from it.
What is the difference between chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME)?
I use CFS and ME interchangeably. Some think they are separate conditions, but the symptoms and effects are extremely similar. Thus far, the term “CFS” is used more in America, and “ME” is used more in other parts of the world. Personally, I support the name ME or myalgic encephalomyelitis, because I find CFS or chronic fatigue syndrome to be misleading. CFS makes it sound like someone is just really tired, whereas ME/CFS is actually much more than that, as you will see below. So, at least for purposes of this blog, I will use the term ME/CFS.
What is ME/CFS?
There is little consensus among the medical community regarding a proper definition of ME/CFS. Personally, I support this one:
ME/CFS is a severe, complex neurological disease that affects all body systems. It is characterized by a profound dysfunction/dysregulation of the neurological control system and results in faulty communication and interaction between the central nervous system and major body systems, notably the immune and endocrine systems, dysfunction of cellular energy metabolism and ion transport, and cardiac impairments. Its cardinal symptoms include a pathological low threshold of fatigability that is characterized by an inability to produce sufficient energy on demand. There are measurable,objective, adverse responses to normal exertion, resulting in exhaustion, extreme weakness, exacerbation of symptoms, and a prolonged recovery period. (source)
What are the symptoms of ME/CFS?
As noted above, there are many varying definitions of ME/CFS. Historically, one definition required a patient to satisfy the following:
Have severe chronic fatigue of six months or longer duration with other known medical conditions excluded by clinical diagnosis; and
Concurrently have four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours.
Other symptoms include:
- difficulty finding words
- inability to comprehend/retain what is read
- inability to calculate numbers and impairment of speech and/or reasoning
- visual disturbances (blurring, sensitivity to light, eye pain, need for frequent prescription changes)
- psychological problems (depression, irritability, anxiety, panic attacks, personality changes, mood swings)
- chills and night sweats
- shortness of breath
- dizziness and balance problems
- sensitivity to heat and/or cold
- alcohol intolerance
- irregular heartbeat
- irritable bowel (abdominal pain, diarrhea, constipation, intestinal gas)
- low-grade fever or low body temperature
- numbness, tingling and/or burning sensations in the face or extremities
- dryness of the mouth and eyes (sicca syndrome)
- gynecological problems including PMS and endometriosis
- chest pains
- ringing in the ears (tinnitus)
- allergies and sensitivities to noise/sound, odors, chemicals and medications
- weight changes without changes in diet
- mental fogginess
- muscle twitching
- orthostatic dysfunction
- frequent sighing (source)
How is ME/CFS treated?
At this point, there is no cure for ME/CFS. Only the individual symptoms can be treated, not the overall condition.
ME/CFS sounds similar to dysautonomia. What is the difference?
Honestly, I don’t know. I was diagnosed with ME/CFS before POTS/dysautonomia. Whether I have both depends on which definition of ME/CFS you use. If ME/CFS involves symptoms that can’t be explained by any other condition, then I don’t have ME/CFS, because almost all of my symptoms are explained by POTS/dysautonomia. However as you can see from the above, the list of symptoms of the two conditions is almost identical. Both conditions affect the nervous system, thus influencing numerous bodily systems, including the circulatory, digestive and endocrine systems. There is quantitative diagnostic criteria for POTS/dysautonomia – an increase of 30 bpm or more when going from supine to standing. ME/CFS still lacks universal diagnostic criteria. Many medical professionals believe there is a correlation between ME/CFS and POTS/dysautonomia. (source) The extent of the correlation is currently being researched.