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  • The Member Stories section of our site is a place where members can submit the stories of their experiences as a person living with dysautonomia.  We also link to member stories that have appeared in our newsletter.  Please note that Member Stories are not edited by DINET and the views and beliefs expressed in the articles are strictly the views of the member.   Please note that the stories submitted are reviewed for content and should follow the guidelines of the site.  We do our best to publish each story submitted,  but publication is at DINET's discretion. If you would like to submit your story, please write to webmaster@dinet.org - include "member story" in the subject line. 

Heart Story


By Jolene
August 2005

I have been grateful for the personal stories on the website and find I can recognize a little of myself in all of them. I thought it was about time I provided mine.

I cannot pinpoint the exact time or day when things started to change in my life due to POTS.

I am 30 and married with 3 school aged children. In 1998 I had dental treatment and was overdosed on diazepam with 2 ampoules through IV, which was too much for my very slight body weight!  My breathing was compromised, an ambulance was called and adrenaline administered. I was admitted to a hospital overnight and discharged.

Just a note, before I go further, with all of my pregnancies I have suffered extreme hyperemesis which I recently read somewhere on this site is common with POTS.

When I think back on it now, I was suffering POTS symptoms for many years before finally stepping back and realizing something was not right with me. When you are young and busy with babies, it is easy to forget about your own health and ignore niggling symptoms which can easily be put down to tiredness from sleepless nights and having a young family. Another thing is we get used to feeling the way we do, and how do you define what is "normal"?

You should see my GP's notes!  In the end, I would be in tears saying something was wrong...but what.

I know that I have always been very thin, and no matter how much I eat I can not put on weight. I always felt good when pregnant (despite the hyperemesis!) due to the fact I had some meat on my bones!

It started with ectopic beats - flip flop heartbeats...and a racing pulse. That was my first indication something was not right. Once again, with a busy life and young babies, I ignored it. I would often, sometimes weekly, get sick; and I thought I was not getting enough sleep or eating the right foods.  My HR sits around 100-120 bpm, and when I am busy it can get up to and above 180 bpm.  My BP is all over the show, and I have given up wondering what it is now.

A few years ago, I was referred to Dr Jardine, based at Christchurch Hospital.  He diagnosed me with POTS. Due to my ability at that time to manage/cope with POTS, no treatment was given. I find some days I am worse then others. I can become tearful and frustrated on my bad days and find it hard to know if it is related to POTS or just an off day. Apart from that one day with the cardiologist, I have had no management of my condition.

Just lately I have found things have become much worse. I initially did not even consider it was POTS, but thought I had some terminal illness or I was losing my mind. Interesting to note that for as long as I can remember, I always sit down in the shower, as it is where I am most comfortable, and I feel less off balance. Fatigue has become worse even though my youngest has started school.  Where is the logic in that?

I feel more light-headed and dizzy even when just sitting; I feel a see-saw effect which is very scary. I am not moving bodily, but my head is! My blood pressure is low, even on Florinef.  We recently took a plane trip as a family, and I NEVER drink, but I felt so bad that I cried and asked for a double whiskey! Thinking back on this, it was POTS! I never considered it then. The downwards pressure was tremendous, and I really felt like I was going to pass out.  It was to the point on take off that I could NOT lift my head up from my chest. I also feel nausea most days and will wake up and dry retch at least once weekly. I cannot eat mince, cheese or anything fatty/spicy, or otherwise after a couple of hours of stomach cramps/pain I am physically sick. I have lost my appetite over the past six months and don't want to eat, but I do it out of necessity. This is sad as I used to have such a healthy appetite, and I could eat my husband under the table at buffets!

Lately, I have had tremendous pain in my legs (this is a new symptom for me) from hips down. It is very bad at night. I am petrified of developing CFS, as I know this can come on due to POTS. I simply do not have the time to be unwell! It scares me.

The house can be nice and tidy one day and a mess the next. What do I do?  I am angry and frustrated.  I feel old before my time.  These are meant to be my best days. I remember when I was younger and the kids were little my house was perfect. Not an item of clothing was to be seen, not a dish, not a toy, everything had its place, and I was the model mom. I sometimes wonder if I contributed to my POTS due to my super-mom mentality! You have to wonder!

I do not like taking medication of any sort, but lately I feel willing to try anything.  I feel my condition has certainly worsened since my diagnosis and have an appointment this coming week with my cardiologist, as I am feeling so bad.  Today is an off day, and what prompted me to write this is that I am so damned TIRED!! I want my life BACK!!

I feel for all of you and the hundreds of others out there who have yet to be diagnosed with POTS and who are possibly, like I was, wondering what the hell was wrong with them.

Strength to all :) xxx


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