defender of the people
“I don’t know.” “Maybe it’s all in your head.” “Maybe you’re making this up and need counseling.” It could be.” It could be a painless migraine. ” Amanda Griffin heard these statements during the five-and-a-half years she’d been seeking answers about the unique symptoms she was experiencing.
Amanda explains: It is a type of autonomic imbalance, which means dysfunction of the autonomic nervous system. The Wikipedia summary states, “The autonomic nervous system (ANS), formerly called the vegetative nervous system, is a branch of the peripheral nervous system that supplies the internal organs, smooth muscles, and glands. The autonomic nervous system is primarily A control system that acts involuntarily and regulates bodily functions such as heart rate, force of contraction, digestion, respiratory rate, pupillary response, urination, sexual arousal, etc. This system is the primary control system for the fight-or-flight response. It’s a mechanism.”
Amanda is 31 years old. When she was 20, she worked in a nursing home and described herself as a “normal person.” One day when she was understaffed, she ran around trying to get to work on time and completed her to-do list. When she entered the hospital room to have her blood pressure taken, she suddenly felt dizzy. When Amanda leaves her room, she bumps into a few things. As people noticed, they asked, “Are you okay?” Amanda replied, “I don’t think so.” She explained how she had slid down the wall onto the floor. She couldn’t drive home in her car, so she lay in her room until her parents picked her up. She convinced them that she didn’t need to go to the hospital, but she still felt dizzy. For the next few days she needed help walking. Her weakness continued and she was tired and unbalanced.
At first, Amanda visited her doctor, who had no idea what was going on with her, so he sent her to a specialist. Even the experts were ignorant. She said she “took five and a half years to get a diagnosis.” After her disappointing feedback and her lack of diagnosis, Amanda walked away from the doctor. she said. And suddenly her symptoms started increasing. ‘ She got a new medical team that she ‘believed’ that something was wrong. One neurologist told her she needed counseling because it was all in her head, but her next neurologist took her seriously and referred her to another specialist. There, she took her test on Tilt her table and her diagnosis of POTS was confirmed.
Amanda continues. You don’t usually think about breathing or think about digestion. I’m not thinking about heart rate or warming or cooling the body. Those are what your autonomic nervous system does. In people with dysautonomia, part of the autonomic nervous system malfunctions. The form of dysautonomia that Amanda has is her POTS, which is related to posture, especially standing. she explained. When a typical person stands up, all the blood vessels in the legs and lower body tighten, pushing blood to the brain so that you don’t lose consciousness or feel lightheaded. ‘ She continues, the body of a POTS patient “forgets how to compress the blood vessels, or is unable to maintain the compression, so instead of the blood rising, the heart is saying, ‘I have to take over the job.'” I explained. ,” and beats fast to get blood to our brains and the rest of our bodies. About a third of POTS patients faint. Luckily Amanda has no such problems, but her vision goes gray or black at times and her heart rate is constantly elevated.
The Mayo Clinic lists the following main symptoms of POTS:
Amanda explains that heart rate changes are diagnostic criteria. And she usually shares, “They get the whole package.” She discusses her struggles with brain fog, digestive problems, and shortness of breath, which Amanda describes as her two parts of the autonomic nervous system: fight and flight, and rest and digestion. doing. In the same way that normal people get nervous when they see something scary, even daily activities such as standing up can make your body tense. Therefore, rest and digestion do not work during fight or flight and a POTS person may experience her GI (gastrointestinal) problems.
Amanda describes her syndrome as “invisible.” “I can’t see anything in my body. I look healthy and normal.” Other days I have flares and the symptoms are much worse. ”
Amanda is taking medication to ease her symptoms. She explains that there are no FDA-approved treatments for POTS, saying, “Basically, we take medications for symptom management. We drink a lot of water and eat a lot of salt.” She explained that salt helps with the low blood pressure that many POTS patients experience. She shared that many of her POTS patients carry salty snacks and salt shakers with them at all times. Other lifestyle helpers include compression socks, canes or additional walking aids, and shower chairs.
“POTS is very much like a spectrum,” explains Amanda. “Some people have very mild symptoms. Some are bedridden. Some go to work or college and do normal things.” I can’t work or do a ‘typical’ 40 hour week, but I can drive a car. She gets tired quickly and has to lie down frequently for her recovery.
During her five-and-a-half-year search for answers, Amanda visited at least ten doctors.Through her research, she found that the average POTS patient sees seven doctors before finding answers. Did. she said: They estimate that 1 to 3 million Americans have her POTS. 48% said he would have to travel more than 100 miles for an understanding doctor. ’ she said. I think they are working to the best of their knowledge. POTS is something many doctors have still not heard of. ”Many infections and illnesses give her POTS. Amanda reported that COVID was one of them. She concluded that all her POTS patients remain a mystery to doctors. “It’s very important that we raise awareness. There are so many of her POTS patients who need help,” she said.
“I’ve noticed more kindness and compassion towards others and less rushing to conclusions because I now live a life where people can easily jump to conclusions,” shared Amanda. “You gave me the ability to appreciate the little things, the people who stand by you and stand by you. I have wonderful parents who do everything imaginable.”
Amanda has an Etsy shop. moreover BlessedShe sells products to raise awareness and spread awareness about POTS and other chronic disorders and diseases. She says, “I look for ways to bring joy to difficult situations. God is a great strength to me and says, ‘My grace is sufficient for you. It is made perfect in your weakness.’ He helps us find hope in difficult days.”
For more information and statistics about POTS causes, symptoms, and treatment, visit standuptopots.org or dysautonomiainternational.org/POTS.