Post

My Life=pots And Svt

Well to start off with I am 17 and my name is Summer. About three years ago I had a life and really would like it back. It all started when one day I decided to pick up my laundry and when I came up,,well my heart was beating out of my chest. I went to the family doctor..( i live in MS by the way) anyways my family doctor sent me to a doctor in hattiesburg,after blood work,stress test,tilt table test, three heart monitors.. they diagnosed me with SVT. Well they sent me to Jackson..to a peds doctor. They ran a series of test and decided to do a EP study also known as a heart ablation. They went in and found to much tissue around my AV Node. Six months later still having the same problems they do another ablation and they find tissue in the same place again. After the surgery i felt different but things were getting much worse..I was told I have POTS + SVT.. All the symptoms of POTS i have and svt i have too. It has been crazy. I have passed out maybe five times. Heart rate has been extremly high.. I used to be active but know thats Hard to be. I have lost 15 pounds,,that i didnt need to lose.. I feel like crap all the time but its like no one understands how one minute you can be fine and the next its like a ton of bricks just hit your chest and your expected to get up and have a life and be happy..when honestly i would rather lay in my bed forever. Im tired of POTS.. Im sick and tired of being sick and tired.. I want my life back
ktsummer ktsummer 18-21, F 6 Responses Nov 6, 2011

Your Response

Cancel

Im just like you dude. I got diagnosed with POTS a while back but something changed for me almost three years ago... im turning 17 in june. About three years ago my heart started to be too fast when I started to do things like walk and it worsened to when I rolled over at night. It makes it hard to breathe. Im on meds now but they dont really help, ive been like this for three years nearly. I cant walk down the road or go out. Im homeschooled and if I do feel well enough to go out I end up having to use a wheelchair. I just want someone to help me. Ive lost weight after being sick for a while and now the docs are blaming it on that when it isnt my weight. I only lost like 5-6 pounds. I feel so alone in this.

Hi Summer- I completely understand where you are at.


I was born with POTS & what they call sinus tachycardia- which usually leads to SVT. My mom& dad didn't pursue treatment when I was little. It got really bad when I was 13 and the sports medicine doctor at my school insisted that I see my doctor. Over the next 7 years I saw specialists in different hospitals, wore more holter/event monitors than you can imagine, been hospitalized, passed out, horrible migraines, and tons of "normal ekg's". When I was 20 I began having leg pain that was out of this world. The doctors cardiac floor of the hospital I was at decided that since they couldn't figure out what was wrong- then by all means I must be crazy and making all of this up (yea I know). They put me on a psych floor and removed me from all cardiac treatment. Over the next 2 years I was on all different types of antidepressants and such which made me bipolar. I went off of them a year ago and became my normal self again.

A dear friend of mine who happens to be my OB/GYN started noticing something was wrong with me again. So this time she took notes. After 7-8 months she told me that she knew that I knew something was wrong and if I didn't go see my cardiologist that she was going to directly admit me to the hospital. I went to my doctor a week later and for the first time in my life they finally caught the SVT on the ekg. When my heart really gets going sometimes Afib comes through but that is few and far between. Sinus tach happens a lot. As my doctor read my file, he did something that shocked me, he put his head in his hands and said "Oh **** what did we do?!" He began to apologize over and over again about allowing me to be misdiagnosed- he said something is seriously wrong.

He slapped another monitor on me and the company called me at least every other day because my heart would suddenly spike up to over 200 bpm while I was laying down, sleeping, showering, etc. I can't even run anymore (and I am a avid runner- 4 miles a day. I can't even run 1/4 mile because I get dizzy, can't see, lungs burn, and my chest beats like crazy). Within 10 days after I put the monitor on, I ended up in the hospital, 4 days later they scheduled me for an ablation.

The ablation was unsuccessful :/ I was devastated- After 23 years my body, mind, etc is exhausted. This was when my doctors decided that I needed to go to the Cleveland Clinic because this isn't seen as often. My cardiologist called the Cleveland Clinic- which got me in in 4 days. They are trying a newer medication on Baxatol which isn't heard of very often. In fact I was hospitalized this last Monday and just came home today.

We are still trying to figure out what exactly to do. When I go into an episode my body pulls all the minerals and electrolytes and gets rid of them. When I got to the ER this last Monday they said my pH was extremely out of balance and I was lucky to be alive- this was all due to what my heart was doing that entire day.

I want to offer you encouragement. I know it is hard and I get very emotional when I speak with my doctors because I am exhausted and just want to have a normal life. I would love to jump on a trampoline, ride a roller coaster, run the color run, etc. My doctors understand and told me they don't want to put a pacemaker in for at least 5 more years because they don't want me to become pacemaker dependent.

Here are a few things that help me:

-- Isha Yoga (Krya )
-- Good energy work- at first I didn't think it would help but it does
-- Adding Brewer's yeast to your daily medications
-- Also if you have trouble laying down flat like I do- get a wedge off amazon to put on your bed, that way you aren't laying flat or sitting straight up- this will help not put as much pressure on your heart and let it rest a little.


If you need to talk of have questions email me! This is the first time I have found someone who goes through what I do- there aren't any patients that go through this that my doctors have in my area.


There is a lot more to my story but so much to write and not enough space!

i feel your pain and youre not alone girlie. im 28 and have been dealing with svt and pots for 5 years now. it started after my first son was born and got worse with my secone. now i cant have children and cant even run or play with my boys. i used to be extremely jocky when i was younger and now i get tired doing regular houshold chores. ive literally quoted im sick and tired of being sick and tired, im hoping you will be able to grow out of it because of your young age, but me on the other hand...im a lifer....so best of luck with you and keep your head high and hope for the best!

I know how you feel. I am 14 and have been sick for 3 years. I have been through every test except the tilt table and all have came up negative. I have Doctors all the time telling me, oh you look fine! I do 40% of the time. The rest of the time I am sick! Hang in there! Things have to get better, there doesnt seem to be enough room for things to get worse:).. Keep us updated on how your doing.

keep the faith. I went 10 years and didn;t have any positive tests-- they are just now catching things with me and I see doctors at Cleveland Clinic for help. Good luck!

Im 39 and have pots and svt i guess.. i have these "episodes" where my heart rate shoots up... I hate it... Doctors dont seem to help me so i spend most of my time in the er.... My jobs on the line and im worried my children will lose me one of these times...

I've been there. I am currently seeing a Dr at the Cleveland Clinic. My episodes get so bad tht my electrolytes get messed up and my pH does crazy stuff and I almost died this week. The doctors were shocked I lived through it. Good luck to you! I am currently trying a medcation called Bexatol right now- they think it will help most doctors haven't heard of it

I found that people who develop pots in their teen years outgrow this life changing disease . I am 38 years old and developed pots ,it has changed my life rather drastically . I can no longer work or do anything that I use to do. I have tried everything out there and nothing seems to help. On top of the pots I have developed fibromyalgia. I am constantly exhausted and can get nothing done. I hope for sake that you outgrow it or your symptoms subside and you can get your life back . I have almost given up on a cure or treatment that will work.