Toledo, Ohio Doctor’s Appointment Update

I apologize for being a few days late with my health update from Toledo.Traveling takes a toll on my body, so I needed a few days to feel better. I want to thank you all for your love, support, and prayers for this appointment. They were truly with us.

Chris and I met with Nurse Practitioner Beverly Karabin at The University of Toledo Medical Center on November 28th. She is a POTS specialist who works with Dr. Blair Grubb, who is a founder and researcher for POTS. As a reminder, POTS stands for Postural Orthostatic Tachycardia Syndrome. She was such a blessing with her sweet spirit and knowledge of the disease. She happily spent 1 hour and 20 minutes with us. To make a long appointment short, we got several answers we were looking for. When I went to Mayo Clinic in ’09, I was told I had type 2 POTS, but we were never informed on what it’s called or what it meant. After sharing with Beverly my daily symptoms, including my attacks, she was shocked that I had never been informed of the type of POTS I have been living with all these years. The type of POTS I have is called hyperadrenergic.This form of POTS is less frequent, meaning few patients have this and more extreme. Hyperadrenergic POTS is described as a gradual more progressive onset than an abrupt onset like the first type of POTS.

The first type of POTS is the primary POTS most all patients have called “partial dysautonomic” or PD. These patients suffer from mild symptoms. This type begins after a viral illness, after pregnancy, surgery, sepsis, or a trauma. This form also has 30% of patients passing out at any given time. Over half of these patients with the onset of a viral illness appear to recover 2-5 years after onset of POTS. However, some patients who do not have viral onset never recover and get worse over time. I fall under this prognosis due to my onset.

Hyperadrenergic POTS patients complain of symptoms being more severe and on a daily basis. We have bad days or really bad days when it comes to how we live each day with symptoms. One way they describe this type of POTS is we live the life as a patient with congestive heart failure. Examples of symptoms include elevated heart rate, palpitations, cold and sweaty extremities, frequent migraine headaches,mine are every two weeks for 3 straight days, nausea, fatigue, heat and exercise intolerance, difficulty traveling and doing normal everyday tasks, chest pains, shortness of breath, increase urinary output, and severe and frequent attacks/storms. This is only a few of our symptoms. A common way doctors describe POTS is when someone is attacked by a predator, their body automatically gives them adrenaline to run from the predator. POTS patients live like this 24/7 or constant “flight”mode. When attacks/storms occur, the adrenal glands, for no real reason and at any time, shoot out large and abnormal amounts of norepinephrine, which then puts our bodies into extreme “flight” mode. When we get our attacks/storms, our bodies instantly develop a rapid increase of heart rate (in the high 100’s to low 200s, more than our normal elevated heart rate), dizziness, sweatiness, inability to walk or talk normally. We get upset stomach, nausea, the urge to urinate, strong heart palpitations, among other symptoms, all at the same time. These attacks can last for a few minutes to several hours at a given time. Hyperadrenergic POTS consists of IST, which I was diagnosed with several years ago. IST stands for Inappropriate Sinus Tachycardia. The prognosis with this type of POTS is indefinite, depending on how it occurred. The ironic thing we learned at this appointment is that I fall under almost a crossover of both POTS categories, which happens to a few patients. The doctors at Mayo clinic, as well as Beverly, strongly believe I was born with POTS and that my Graves Disease and Thyroid surgery brought it out of dormant. Prognosis for me basically means life-long.

Now that I have explained POTS, I can get more into the appointment. I was told by Beverly that all the beta blockers that prior doctors had put me on were the wrong ones for Hyperadrenergic POTS.  The ones I was put on in the past were for type 1 POTS. That is why I either felt worse while taking them or it was as if I was taking nothing at all. As a trial, she prescribed a new med that works for some type 2 POTS patients during the attack/storms. It should lessen the duration of my attacks, as well as a new nausea med I can take any time of day for relief, since my nausea is constant. She also confirmed to me that some new problems I have been having are a part of this as well. I have episodes where a rush of GI problems occur, and I am in the bathroom for an hour-plus, along with dizziness, my body tingling all over, high heart rate, and palpitations, occurring all at the same time. Then for about a week after this happens, I am incapacitated. It was nice to know it was not something I ate, but what stinks is that I will experience this the rest of my life.

Lastly, I have been told for many years that pregnancy is not an option or a safe one at that.  After talking with her about everything, we now have the blessing to have a baby. I will have a high risk OBGYN doctor who can monitor me and give me extra care. One thing she did not know was if I will pass POTS on to my child. This disease was founded in 2000, and she said they are in the infant stages of research. Knowing that, some issues cannot be answered yet, but hopefully will be with new research over time.

I am sorry about the length of this email, but I wanted to break it all down for you to understand. Thanks again for all your prayers for us and this appointment.  What is more exciting is that she is willing to be my POTS doctor forever. Even though she is long distance, she will prescribe my meds, answer all my questions, and follow up once a year. Thanks again for all your love, support, and prayers for me all these years.

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Information About My Condition

I have Dysautonomia, which basically involves a malfunction of the autonomic nervous system. The sympathetic nervous systems remains in a state of flight. This system is meant to function in an emergency situation (such as being attacked by a predator). Ultimately, the adrenaline from the constant flight causes the rapid heart rate and other symptoms to occur.

We have been told that a possible cause for this is due to traumatic experiences on my body.  Examples include Graves’ Disease, my thyroid surgery, and heart ablation.  Any surgery can be traumatic on the body which can cause this.  I may have even been born with POTS (Postural Orthostatic Tachycardia Syndrome).  The surgeries and Graves’ disease were most likely what triggered the autonomic dysfunction.  My heritage also plays a role.  I am Scotch-Irish, blonde, tall, and lean.  These are common characteristics of POTS.  That being said, I was more than likely born with this condition and it lay dormant until after my operations.

Symptoms

I experience the following symptoms everyday, sometimes all at the same time. Many occur at once, causing a “storm.”  Extreme fatigue makes day-to-day functioning and activities extremely difficult.  Exercise intolerance occurs, no matter how conditioned I am or the type of exercise I participate in. While exercising, I often feel a burning sensation throughout my body. On many occasions, I deal with light-headedness and dizziness and experience nausea almost all day, everyday.  Gastrointestinal problems occur due to blood having difficulty going to the necessary location in the intestinal area. This causes upset stomach and nausea. I have migraines every 2 weeks for 3 straight days, and medicines  do not alleviate them.  Additional symptoms consist of frequent chest pains, heat intolerance, tunnel vision, visual disturbances, heart palpitations, tachycardia (fast heart rate),  stiff neck, tremors,  weakness,  poor memory, insomnia, itchiness, restless legs, and tingling all over my body throughout the night. POTS disease also encompasses mood swings and shortness of breath while talking, moving, exercising, and sitting.   The symptoms I experience are life-altering and debilitating.  The severity of my symptoms will vary from day-to-day, and there is nothing I can do to prevent a bad day symptom-wise.

Activities that can worsen my symptoms or cause “storms”  include exercise, heat, housework, bending over and coming back up, climbing stairs, bathing (due to hot water and standing), anesthesia, blowing out a lot of air at a time such as blowing up balloons, certain foods (some of mine include sugar replacements and reduced fat/fat free foods),  dehydration, eating large meals, energy drinks, giving blood (due to complications with blood pooling and difficulty transferring blood to all the organs of my body), holding my arms over my head, and lifting objects. Many medications also bring on symptoms/”storms”, including generic medicines and several over-the-counter medicines.  These also tend to worsen symptoms: over-stimulating environments, such as stores or places with bright lights, loud noises, and busy or crowded places, singing, stress in general, especially surgery, pregnancy, child birth, and travel.

Long-term Outlook

Some people have POTS their entire lives. The doctors are not sure if I acquired this from my past operations, or I was born with it.  That being said, I may have this the rest of my life not knowing what brought it on. I have read that patients with POTS have a quality of life similar to a patient living with Congestive Heart Failure. Some people with POTS are unable to work due to severity of their symptoms. Most patients including me have to make lifestyle adjustments to live a “new normal” to cope with this disorder. POTS can be hereditary. When a patient with POTS is being treated, the medicines will not cure them, but help them cope with symptoms.

For more information:

Dysautonomia Information Network
Dysautonmia Youth Network of America
Information About Dysautonomia

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