I have had to learn some new words recently…Dysautonomia and Postural Orthostatic Tachycardia Syndrome (POTS for short). You may say that you have never heard of this – it is because it is a chronic illness that is not diagnosed very often. My daughter, Katy has had severe illnesses since second grade – she had stomach pains, cramps, migraines, sleeplessness, body aches, severe anxiety, shortness of breath, chronic fatigue, blurred vision, large pupils, fast heart rate, weakness, dizziness, brain fog & lack of concentration or memory loss etc. She often complained that it was too hot or it was too cold, or the sun was too bright or the overcast days made her eyes hurt. We went from doctor to doctor trying to figure out what was wrong. I sometimes thought she might be faking it because it seemed like it was always something wrong – how can one person have that many issues and they weren’t even related (Or at least I thought that). She seemed worse in the mornings and on school days so it was easy to think that she didn’t like school. She loved having people over to our house but didn’t go over to others as much. I feel so bad that we couldn’t have figured this out sooner – before she has gotten even worse. It is hard for her to sit up right now. She was a competitive cheerleader – she was active and very social. She loves kids so much and has wanted to be a teacher since she was a baby! She has quit cheer because she just didn’t have the energy to continue and she felt dizzy most of the time and didn’t want to tumble because of this. I just thought she had a mental block. She is able to intern two days a week in a Kindergarten class and also works in a day care a few days a week – she is unable to do that right now. While all her friends are out having fun – she is lying in bed…not because she wants to but because she can’t do anything else.
We found out about POTS because her cousin was also diagnosed with it. I really didn’t understand what it was and it frankly sounded so weird. I didn’t understand what she was going through or her family, especially her mom. When I saw her – she looked fine. It makes you think maybe they are faking it; because on good days – they do look good! I’ve learned it is not when they are sick that they are faking – it is on the days that they are “well” that they really are faking it. Katy’s cousin went to many doctors and finally found a specialist for POTS and that is when she started treatments. She was also active and on the dance team at school, but now she is bedridden most days and receives homebound school. I never connected Katy’s issues to the same illness; until Katy’s aunt posted on Facebook about Dysautonomia. I started reading the symptoms and I knew then; before the doctor’s diagnosis that Dysautonomia is what Katy had. We did make an appointment and that was her diagnosis.
So what in the world is Dysautonomia? “Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.” Postural Orthostatic Tachycardia Syndrome (POTS) – estimated to impact 1 out of 100 teenagers and a total of 500,000 to 3,000,000 Americans. POTS can cause lightheadness, fainting, tachycardia, chest pains, and shortness of breath, GI upset, shaking, exercise intolerance, temperature sensitivity and more. While POTS predominantly impacts young women who look healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions like COPD and congestive heart failure. For more information – please go to http://www.dysautonomiainternational.org
We have just started this journey and the trip may be tough and we will need lots of support! Katy has started taking beta blockers to slow her heart rate, and minerals to help her sleep better. She already takes a variety of other medicines. One of her other treatments is to drink lots of water, and take salt! Yes – she eats straight table salt! It is often recommended to increase both fluid and salt intake in order to increase blood volume, which is typically low in POTS patients. This has proven to be particularly helpful in patients with blood pooling, hypovolemia, or hypotension. Also Katy has to do leg exercises before getting out of bed. These exercises help get the blood flowing in her body and not just pooled up in her legs. Normally, that is why she was getting so dizzy and nauseous in the morning when she would get up. There are so many other things that she has had to make adjustments with and we are still struggling through them. Now she feels complete exhaustion and she hasn’t even had any good days lately. Hopefully the medicine will get regulated and we will see improvements!
Please keep her and all those with chronic illness in your prayers. Also say a special prayer for caregivers – it is so hard seeing your loved ones have such a hard time. I pray for others to have understanding about these kind of issues and I pray for awareness. I am sure there are so many that may not even know that this could be what all those crazy symptoms are and that you can connect to a doctor and to treatment. I am sure I will be writing more – I have researched, googled, started Pinterest Board sharing as much as I can. Learn more about this illness and please share with me and others!