My Journey with P.O.T.S.
Hi, I have P.O.T.S I 'd never heard of it until I was diagnosed with it July 2008. Fact is ... Most doctors know little or nothing about it. All too often patients are misdiagnosed as having severe anxiety or
panic disorder.Even after being diagnosed With POTS, I would go to the doctor or the ER with Symptoms and the doctors and nurses had never heard of POTS. so they said it was Anxiety, Depression, Migraines, all in my head, I should just not dwell on my symptoms, I am too aware of what my body is doing. No way the autonomic nervous system can cause tremors,Just get on with your life. I have seen three different Neurologist, One said Depression and Anxiety, One said Migraines, one said there is nothing neurologically wrong with me. After awhile, seeing the doubt on my families faces, I started to wonder if maybe I was being too sensitive. But... I knew better... Finally March of 2009 I met Doctor David Benditt University Of Minnesota. After test confirming that I do indeed have POTS. He told me to research it.This is some info I have found.
Postural orthostatic tachycardia syndrome or POTS) is a chronic disease a condition of dysautonomia a dysfunction of the autonomic nervous system (ANS). The autonomic nervous system is divided into three parts: the sympathetic nervous system,( "Fight or Flight" responses),the parasympathetic nervous system ("Rest and Digest" responses), and the enteric nervous system. The autonomic nervous system controls involuntary functions of smooth muscle of the viscera (internal organs) and glands, including the stomach, intestine, liver, kidneys, bladder, lungs, pupils, pancreas, gall bladder, and muscles of the heart, eye, and sweat, salivary, blood vessels and digestive glands. The autonomic nervous system controls blood pressure, heart and breathing rates,the secretion of insulin, body temperature, digestion,diameter of the pupils, metabolism, the balance of water and electrolytes (such as sodium and calcium), the production of body fluids urination,bowel function, perspiration, saliva, and tears.
The simple act of standing up can be a challenge. Postural orthostatic tachycardia syndrome is defined by excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing . These exaggerated heart rate increases usually occur within 10 minutes of rising.
- Symptoms may include
- Lightheadedness
- Fainting or near fainting
- Generalized weakness
- Palpitations
- Extreme Fatigue (which can be disabling)
- Sleep disorders
- Headache/migraine
- Myofascial pain muscle pain accompanied by trigger points)
- Neuropathic pain burning or coldness, "pins and needles" numbness ,itching.sensations,
- Tremulousness
- Shortness of breath
- Chest pain and/or discomfort
- Loss of sweating
- Excessive sweating
- Night Sweats
- Delayed gastric emptying
- Bloating after meals
- Nausea
- Vomiting
- Abdominal pain
- Diarrhea
- Constipation
- Bladder dysfunction (excessive urination)
- Pupillary dysfunction
- Blurred Vision
- Tunnel vision
- Dizziness (Vertigo)
- Tachycardia
- Exercise intolerance
- Clamminess
- Anxiety
- Flushing
- Postprandial hypotension (low blood pressure after meals)
- Blood pooling in limbs
- Intolerance to heat
- Feeling cold all over
- Low blood pressure upon standing
- Cognitive impairment ( concentration, brain fog, memory and/or word recall)
- Narrowing of upright pulse pressure
- Cold hands and feet (and often nose)
- Hypovolemia (low blood volume)
- Chills
- High blood pressure
- Hyperventilation
- Numbness or tingling sensations
- Reduced pulse pressure upon standing
- Low back pain
- Aching neck and shoulders
- Noise sensitivity
- Light Sensitivity
- Disequalibrium/Imbalance
- Arrhythmias (irregular heart beats)
- Chemical sensitivities (can be very sensitive to medications - may only need small doses)
- Easily over-stimulated
- Feeling full quickly
- Feeling "wired"
- Food allergies/sensitivities (some foods seem to make symptoms worse)
- Hyperreflexia
- Irregular menstrual cycles
- Loss of appetite
- Loss of sex drive
- Muscle aches
- Joint pains
- Swollen nodules/lymph nodes
- Polydipsia (excessive thirst)
- Weight loss or gain
- Feeling detached from surroundings
- Restless leg syndrome
- Unsteady gait
I also get symptoms of:
.Jaw Pain / Tension (lower Face numbness, slurred speech w/misplaced words)
. Popping in neck/Skull, Ankles, Shoulders and chest
.One pupil dilates
.Fluttering in Chest ( Makes me cough)
. Wake up with burning (Heat) sensation in chest to back
.Pressure in head
. Electrical surging sensations (Head and Chest)
. Very fast pulsations sensations in my whole body.(Not my pulse)
The symptoms of POTS are life altering and debilitating at times. POTS patients use about three times more energy to stand than a healthy person. It is as if these patients are running in place all the time. Activities such as housework, bathing, and even meals can exacerbate symptoms. Research shows that POTS patients' quality of life is similar to those with congestive heart failure and chronic obstructive pulmonary disease. Most patients will have to make some lifestyle adjustments to cope with this disorder.
POTS symptoms can vary from day to day.Our body is in a chronic state of dehydration,gatorade can help and drink plenty of water all day.high salt intake, Compression stockings help keep up blood pressure.) I can not stand very long. Standing or even sitting with my feet down can cause dizziness, fast heart rate,tremors,headache, and other symptoms. I have different amounts of endurance depending on the day or hour. I also notice room or outside Temperature really makes a difference on my symptoms. It can bring on my tremors or chest pains.
Sometimes angels fly close enough to
you that you can hear the flutter of
their wings...
Photo: Angel Kisses Alicia Bittis
Song: Angel Kisses From Heaven Above Lyrics written By Evalyn Krueth