Living with POTS – The Ignored Nervous System Disorder© Rancho la Puerta, Mexico

Living with POTS – The Ignored Nervous System Disorder

by Wendy Baruchowitz - Integrated Nutrition And Health Counselor

Finally. I was pregnant with my second child at the age of 39. At fifteen weeks doctors told me that due to early contractions I had to be placed on bed rest for the duration of my pregnancy. A mere inconvenience, I reasoned.

I couldn’t be more wrong.

About a week before my due date, I was allowed to finally get up and get back to normal. Only, when I tried to start moving, I felt awful. I couldn’t stand, I felt faint and dizzy, was overcome by nausea and sweating, and my heart rate had started to soar.

“Don’t worry,” I was told by my doctors. “It’s normal to be out of condition. You’ll be fine once the baby is born.” I knew something was terribly wrong.

But I wasn’t. I didn’t have a lot of time to concentrate on these odd and disparate symptoms, because soon after I was taken off bed rest, Blake, my second son was born.

And things did not get better. My symptoms seemed to multiply and I began experiencing migraines, light-headedness, shortness of breath, incontinence, chest pain, debilitating fatigue, gastrointestinal issues, insomnia, ice-cold hands and feet, vomiting, cognitive impairment, and adrenaline rushes, among others.

Worst of all, I was unable to care for my newborn baby, and could not even hold him because I was constantly losing my balance and near fainting. I was petrified of dropping him. Desperate to find answers, I used every ounce of strength to pull myself out of bed (the only place I could feel safe) to be evaluated by dozens of doctors.

I went to the best medical institutions in New York City, yet not one doctor could provide a definitive diagnosis. I saw neurologists, internists and cardiologists and explanations ranged from post-partum depression to anxiety to “it was in my head". I was offered counseling and anti-anxiety medication.

With each inconclusive diagnosis, I became more determined to discover what disease or disorder was causing these maddening and debilitating symptoms. Finally, my research led me to a disorder known as POTS, postural orthostatic tachycardia syndrome. POTS is an autonomic nervous system disorder, which falls under the dysautonomia spectrum.

I had never heard of POTS. Could it be that all my doctors had never heard of it either? I continued on my merry-go-round of seeing physicians, only this time I went with the express purpose of asking them to verify my self-diagnosed disorder.

Still, no diagnosis. One psychiatrist even forced me to write “I do not have POTS” ten times, as if I were a child in school being punished for bad behavior. This is when I knew that I had to find a specialist in the field.

Finally, three months later, a cardiologist in New Jersey confirmed my POTS diagnosis!

Searching the Internet I discovered a facility in the United States that has a special clinic for POTS patients. In my research, I learned that between one and three million Americans are diagnosed with POTS, which is more common than Multiple Sclerosis, Parkinson’s Disease and ALS combined, yet it is a disorder that the average person (and many doctors) are not familiar with.

Along with my husband we flew to Ohio to see Dr. Blair Grubb, the foremost specialist in this field. He put together a specific protocol for me including adjustments to my medication, increasing my daily salt intake, and most importantly, he prescribed orthostatic cardiovascular exercise.

I had already started swimming (very, very slowly), because I felt comfortable in the water. But how on earth could I engage in cardio exercise when I could barely stand?

“Little by little,” he told me. Each day, I started doing just a little bit more exercise.

Along with the protocol he prescribed, and a diet that was now rich in nutrients and plant based, devoid of gluten, dairy, refined sugar, caffeine and processing, I began to feel a change.

I had been a junk food junkie, gorging on chips and eating frozen, processed dinners, all my life. This new healthful food intake and all the exercise was a total turnaround. Within 6 months, I lost 25 pounds, and became addicted to my exercise routine.

In the next few years, as I learned more and more about this disorder, I became an activist. I was angry because I had been mis-diagnosed, ridiculed and dismissed. If this happened to me, I knew it had surely happened to others. I learned about the POTS community and that there are hundreds, thousands of people who do not have the resources to get answers. I found out about teenage girls who are bed ridden and missing out on their youth.

I went on a mission to spread awareness about POTS and dysautonomia. I produced a short documentary film about the disorder, joined the board of Dysautonomia International, embarked upon speaking engagements and began telling my story to media outlets. I produced a fundraising walk where we raised $20,000 for research.

Today, I exercise every single day of the year (including Christmas!), work out with weights 3 times week, walk 5 miles a day, and eat a clean diet. I meditate daily and keep a very positive attitude. Because of my belief in eating nutritionally sound, non-processed foods, I went back to school to become an integrative nutritionist to help others with chronic disease improve their health through food and counseling. My company is called Food That Cares, LLC and I am currently writing a cookbook for people with autonomic nervous system disorders.

I want to help others find modalities to wellness through good food, movement, meditation and embracing joyfulness. And every day, I continue to follow my routines, and remain motivated by the phrase that changed my life: “little by little.”

 

published: 05/17/2016

40 comments on “Living with POTS – The Ignored Nervous System Disorder

  1. I have been dealing with POTS for about 2 years. Thank you for the article helpful and writing a cookbook. I have been told exercise is very important but it’s hard to do when you feel so bad. I went to 9 doctors in 2016 trying to get a diagnosis I had never even heard of POTS after 8 months I got in to Dr. Mulldowney at Vanderbilt university. He changed everything for me.I almost canceled the appointment cause I was tired of getting the go round I was to the point I seriously thought I was going crazy. I’m allergic to beta blockers so I pretty much just had to suffer until I got into him. I had an EP study done in July with Dr Steinburg at St.Vincenes he froze off what he thought was causing the issue it helped but was not the problem. I also have celiac disease on top of POTS. I know I really need to work on my diet it’s hard and not even sure where to begin. I will deffinatly be getting your cookbook. Anything to help. Thank you!

  2. Hi Wendy,

    My name is Christina and I also had to self diagnose myself last year in November . Then was finally diagnosed with Pots in December. I have been in a wheel chair for almost 2 months. Tried taking propanolol made my anxiety worse , I’m currently taking Ativan which is the only thing that keeps me calm. I’ve tried the recumbent bike and it gets me to dizzy . I really need a set protocol to get better. Think I might try the pool. Any suggestions with alternative medicine that might work for me? My pots was brought on by a bacterial infection. Any advice would help.

    Thank you,
    Christina

  3. Hi I just wanted to mention how much I love this.. I too was put on bed rest early in my pregnancy and thats when it all started. Once he was born my resting heart rate was 130s, it even got to 186 in an ambulance ride.. I just turned twenty, I just turned 19 when it all began for me. And with a newborn.. it was even harder. Im on a beta blocker now and a salt pill. I exercise at home a few days a week and go for walks with my son every day now.
    I still have my moments but it’s improved greatly.
    This syndrome ruined my life, I feel as if I no longer have my youth. But I keep in mind that thinking negatively will not help my issue.
    I am thankful for someone out there who cares. Thank you.

  4. Hey Wendy!
    I want to spread awareness in my community, but I’m not sure where to start or what to do. Do you have any suggestions?

  5. Hi Wendy. Your story sounds so similar to mine! Can you tell me what medicines have helped you the most and some that have worsened the issues?

    1. Hi Melissa. Thank you for reaching out. I don’t take very many medications. Currently, I take 25 mg of Propanolol (beta blocker) at night and 50 mg of Zoloft (to help regulate my autonomic system). Sometimes, I find the beta blocker lowers my blood pressure, but not to the point of any detriment. I hope this helps and you are feeling well!
      Best,
      Wendy
      http://www.potstakeastand.com

  6. I am a 32 year old preschool teacher and was originally diagnosed with orthostatic hypotension and epilepsy. I was so sick for a year. Dr.Biaggoni and Dr. Has at Vanderbilt saved my life by giving me the correct diagnosis of POTS. It was a 13 month long battle. I am doing better and gaining my strength and independence back. I do need help with diet though. I have cut out lactose, but I would love to cut out the processed junk. I am definitely interested in your cookbook. I would also like meals I could fix ahead of possible. Thanks for sharing your story.

    1. Hi Devon. Thank you for reaching out. I’m so sorry you had such a rough time. I understand firsthand. I’m so glad you are doing better. My cookbook will definitely be able to help you. It will contain healthy, easy to prepare, re-purposable foods/meals. My goal is to have it completed by the end of the Summer. There will be a big media blast so you know will know when it’s out.
      I wish you all the best!
      Wendy
      http://www.potstakeastand.com

  7. I’m about to cry, I have been living with POTS for over 5 years and just received a diagnosis a few weeks ago. I have “flare-ups” when it gets so bad I can barely stand up and I’ll feel an immense amount of pressure in my head and my heart will race so bad, and I’ll feel like I can’t think straight afterwards. I sometimes see purple stars and get really light headed. And the adrenaline rushes are the WORST. And It’s hard because I really don’t have anyone to relate to. Reading your post reminds me that there are people out there who feel the way I do. But I do want to ask; How much better are you feeling now that you’re physically active and eating the right foods? Do you still feel awful after standing up, like you might pass out? I really could use some encouragement that one day I might be able to feel normal again. Thanks!

    1. Hi Brittani. I’m so sorry to hear that you’re having a rough go. I can reassure you that exercise and dietary changes was the biggest impact on my health. Over time, with consistency and a regimen, I significantly improved. But it did take time. Patience and dedication is key (although I know how difficult). Even on my bad days I would still do some form of exercise. I can pretty much function normally now, but every once in a while I will have a day where I feel more symptomatic (not anywhere near passing out), just more tired and do a little less exercise. I hope this helps and gives you hope and reassurance that you can improve significantly.
      All the best,
      Wendy
      http://www.potstakeastand.com

  8. Hi Wendy
    My daughter suffers from POTS
    And has for almost eleven years now. I can’t express how difficult these years have been.Our experience has been very similar to yours many , many doctors and the Mayo clinic where she was first diagnosed in 2009. Slowly we are getting with doctors that somewhat know about her condition.
    she is on the waiting list to see Dr. Grub .
    While waiting my daughter has started a heart rehab workout and beta blockers for heart rate and migraines. It’s very trying! She has stopped working so she can concentrate on her health for a few months.
    Thank you for your article it has really encouraged her about getting to see Dr. Grub.
    She found your page and asked me to read it.
    Wishing you continued good health and looking forward to your cookbook as well.
    Thank you
    Teresa

    1. Hi Teresa. Thank you so much for reaching out. I’m so sorry about your daughter and of course, I understand firsthand. I cannot say enough wonderful things about Dr. Grubb. I’m so happy to hear she is on the waiting list. The one and most important piece of advice that he gave me was the importance of an exercise regime. He has seen many patients significantly improve. It really is about finding the right protocol that works — every POTS patient is different. I have such hope and faith that he will do right by your daughter. I wish you all the best! And feel free to reach out any time.
      Best,
      Wendy
      http://www.potstakeastand.com

  9. So glad to see this article. I just got a diagnosis after five years. I was one of those teenagers! Turns out mine was genetic, but I’m on medication, a new diet, and an exercise regimen now. I still have bad days but the good days are so much better!

    1. Hi Morgan! Thanks for reaching out. I’m so glad to hear you are doing better. Meds, diet and exercise are really the key to having better days. Keep up the excellent work! Feel well.
      Best,
      Wendy

  10. This is a great article! It took 4 years for me to get my diagnosis of Autonomic Failure. I felt like I was on a merry go round with specialists. POTS is very real. I’m glad you are helping with awareness. We do need advocates!

    1. Hi Jo Ann! Thanks for your comment. I so understand! My mission is raise as much awareness and funds for research — as you said, we need it!! I wish you all the best,
      Wendy

  11. Do you work? I work FT and it takes every bit of strength and determination I have. I feel like if I did not work I would be so depressed because I would
    Not be able to be self sufficient.

    1. Hi there! Yes, I went back to school a few years ago and work as an Integrative Nutrition and Health Counselor. I opened my own practice – Food That Cares, LLC. I needed something that would be give me the flexibility to create my own hours. I so understand about the daily grind of a FT job. I used to work at a super fasted paced Ad Agency in NYC prior to my diagnosis and couldn’t imagine having the stamina to keep up now! If you ever feel like your work is too much or too difficult to manage, just know there are other options out there. With your strength and determination, you would figure it out :-)
      I hope you are well!
      Best,
      Wendy
      http://www.potstakeastand.com
      http://www.foodthatcares.com

    1. My 16 year old daughter has POTS and gastroparesis. Diane, are you getting help for the gastroparesis? Need help. On waiting list for Dr. Grubb – 2 year wait!

    2. Hi Diane. Thanks for reaching out. I’m sorry about your daughter. I know firsthand how difficult this is. I’m aiming to have my book completed by the end of the Summer. I will be sure to let the pots and Dysautonomia community know! Are you a member of Dysautonomia Internationals Facebook page? If not, it’s good group to connect with. All the best to you and your daughter! Wendy

  12. Loved this article! So happy you are feeling better!
    Curious about the timeline. 3 months to a diagnosis is really fast in the POTS world (took me 15 months) and Dr. Grubb last time I checked had an 18 month waiting list. Maybe its just the way this article is written, but it made it sound like it was not a long time frame. Maybe someone can clarify.

    1. my 24 year old daughter was diagnosed after 4 long years.doctor said it was all in her head go home and get over it. finally saw a doc that found it. she is realy bad. waiting to see a lady doctor that knows about pots. she hardly does anything. she cant work. she cant look after herself. to scared to drive. only showers when i am home incase she gets bad in the shower. her legs shake and she cant hold herself up.some days i have to help her stand up. so hard to see her go through this on a daily basis.Looking back i think she has had this for over 10 years but doctors didnt know about it.

    2. Hi Ashley! Thanks for reaching out. Yes, 3 months was a quick diagnosis as I researched my symptoms and self-diagnosed before getting it confirmed by a family friend who happened to be a cardiologist. Dr. Grubb…it took me a year to see him once on his waiting list. He currently does have a long wait for an appt. but there is a very good associate in his practice that also sees patients — who you will most likely get in to see much faster than Dr. Grubb himself. I’ve heard very positive things about his associate. Wish you all the best and hope you’re feeling ok.
      Best,
      Wendy

  13. Reading your post brought tears to my eyes. I am just ending my 9 months in bed after triggering a flare of an autonomic dysfunction disorder I never knew I had. I was hospitalized and part of being discharged had to tell the team of psychiatrists, social workers and med students I would not seek any more medical intervention. Thank goodness a neurologist knew something was wrong and fast tracked me to see a specialist in Chicago, Dr. Barboi. We must spread the word so others like us don’t suffer physically and the ridicule while trying to be diagnosed.

    1. Hi Kim! Thanks for reaching out. I couldn’t agree more! My mission is to spread as much awareness and raise as much funds as possible for research so people don’t have to needlessly suffer. Check out my website if you have a moment http://www.potstakeastand.com – look under my Media section. Slowly getting the much needed word and awareness out there! I hope you are feeling better. I’m so sorry for your struggle. I so understand. Wish you all the best and much better, healthier and happier days ahead!
      Best,
      Wendy

    1. Hi Erin! Thank you for reaching out. Happy to share. When I was initially diagnosed, I was severely de-conditioned from being on bedrest for 6 months while pregnant. After giving birth, I could not tolerate cardio exercise, so I swam. I started off very slowly with flippers and a kick board. It was horizontal exercise, non-weight baring and ones heart rate is 20% lower in water. I ended up swimming everyday for 2 years (even on my bad days, I would just swim less laps, but always kept myself moving) until I built myself up enough for out of the water cardio exercise. I know most doctors recommend a recumbent bike or rowing when you initially start exercising (which is super helpful for some POTS patients), but I went straight to the treadmill. The first day I walked on a 1% incline for 1 minute. I went back every day and increased the time and intensity little by little. Over time, my symptoms started to improve and dissipate. Working out with a trainer also really helps — but it needs to be with someone who understands POTS. Having the support and motivation with someone by your side helps tremendously too. Sometimes I run, but all I really need is moderate exercise (not intense) – walking is enough. I really believe it’s the consistency, not the intensity that has brought me to a healthier place. I hope this is helpful. Feel free to reach out with anymore questions!
      Be well,
      Wendy
      http://www.potstakeastand.com

    1. Hi Karen! Thanks for reaching out. I’m aiming to have my book completed by the end of the Summer. Are you a member of Dysautonomia International’s Facebook page? If not, it’s a great resource and the launch of my book will be posted on there as well as my website, http://www.potstakeastand.com
      I hope you are feeling well!
      Best,
      Wendy

  14. What is your website or info? I have pots and I have little understanding let alone a doctor that has a clue. I live in NY.

    1. Hi Maria! My website is http://www.potstakeastand.com. If you look under my Media section you will find a lot of information. Also, I’m on the Patient Advisory Board of Dysautonomia International. You should look at their site. They are a terrific resource, and even have a Dr.’s list of specialist — several being in NY. I hope you are feeling well. Thank you for reaching out.
      Best,
      Wendy

    1. Hi Karen! I’m in the process of developing a cookbook specifically for people with POTS/dysautonomia. It’s due out at the end of the Summer. In the meantime, if you need help, please reach out. I see client’s privately through my Food That Cares nutrition practice. I hope your daughter is doing ok.
      Best,
      Wendy

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