Postural Orthostatic Tachycardia Syndrome

Testimonial

Anneke’s Story

Anneke’s Story

“Along with the reassurance that the team at POTS Care gave my mum and I, they also impressed us with the immense amount of knowledge they have on POTS.”

 

Anneke was an accomplished dancer when she began to struggle with POTS. We knew immediately that her condition was not a psychiatric condition but a medical condition, and we began to focus on the underlying medical cause. Anneke shares her experience on her blog called “POTS and Me” https://potsandme.com/2017/09/07/potscare/  

 

Updated(10/18/2017): “My week at POTS Care was the best week of my life despite not feeling very well at the time. Dr. Driscoll and the team made my mum and I feel very welcome. The best part for me was being able to talk to someone who had been through POTs just like me and the reassurance that there was a medical problem causing me to feel this way. ”
 
Last week, my mum and I traveled to Colleyville, Texas to visit POTS Care. POTS Care is a medical clinic which specializes in treating people with all kinds of POTS. Their goal is to find the underlying medical cause and to develop a recovery plan moving forward. The program lasts two months altogether although it only involves three days at the clinic. During the three days we were there, Dr. Driscoll and the POTS Care Team did the required tests to determine which form of POTS I have. We would then talk with Dr. Driscoll herself for two hours a day to go over what they found and what they were thinking. After leaving the clinic, we will be having a follow-up consultation on the phone next week and we will keep close contact with the team for the next couple of months as I start on my recovery plan. Visiting POTS Care was the best week of my life, despite not feeling great at the time. I have been told for years and years by numerous doctors, cardiologists and specialists that “there is nothing we can do for you”, “there is nothing wrong with you”, “increase your salt and fluid intake”, “you will grow out of it within five years” or “it’s all in your head”. This had become exhausting in itself, not only did no one believe that I was sick, but I was made to think it was all in my head so I would constantly push myself harder only making myself weaker. As soon as I arrived at POTS Care I felt the comfort in knowing that these people believed me, they reassured me that it is a medical condition, not a mental condition and whilst anxiety and depression are two of my most prominent symptoms, they assured me they are a result of a physical release of chemicals and not because I have a mental illness. POTS is an invisible illness until it disables you. I was lucky enough to get through two years dancing at Interlochen Arts Academy in Michigan, USA and whilst I was deteriorating during those two years, it wasn’t until I got home that it became disabling. If you asked a lot of people from my school if I was sick they would say no, a lot of my close friends would also say no if it wasn’t for me informing them. Only my closest friends and roommates ever saw my struggle and even then there wasn’t much to see. This is because of the symptoms and our attitude towards them. Most symptoms are invisible if for example; dizziness, light sensitivity, fatigue, brain fog, depression versus physical symptoms being like rashes, a broken bone, hair loss etc. People living with invisible illnesses keep living their daily lives, the only difference is they live it with the symptoms. This is why no one ever sees or is aware unless you tell them which sometimes makes it difficult for them to believe you are actually ill (very frustrating, lol). Along with the reassurance that the team at POTS Care gave my mum and I, they also impressed us with the immense amount of knowledge they have on POTS. Dr. Driscoll herself was disabled by POTS for ten years and her son and daughter also developed it. After being told like the rest of us that there was nothing to help her, she knew she was on her own and it was up to her to find the answers her family needed. After many years of research, experimenting on herself and publishing her findings, she started POTS Care to help others in her position. Every time she made an observation or suggested something to my mum and I, she backed it up with the science and the test results to prove it. This helped us to understand the medical explanation for my POTS and how we could go about treating it. I am now on a preliminary plan from the POTS Care team and will be taking the next year to work towards my recovery. I will be making some lifestyle changes to be healthier in general which will only help my recovery even more. Look out for my lifestyle changes in my next post. Thank you for reading and please if you have any questions or comments, visit my contact page. I would love to hear from you, hear your story and connect with as many people as I can! Anneke xo


Anneke’s Story

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