The First Time I Got Pots

 The first time I had a bad episode of POTS I was around 22 years old (that was 25 yrs ago...gosh!).  The doctor didn't have the foggiest idea what was wrong with me.  I kept falling over, I was extremely tired, had chest pain and persistent "brain fog".  He gave me vitamin B12 shots weekly, arranged for a nurse's aid to come in and help out at my house and was very compassionate.  The days I spent bedridden I decided that I needed to keep my body strong.  As often as I could from my bed I would exercise: leg raises, sit ups, use my arms while lying down to lift weights.  I couldn't walk to the bathroom, I would crawl on my hands and knees, sometimes it would take me 10 minutes to get there but I would get there.

I also changed my diet from a typical North American one which included lots of carbs and animal fats to an organic one with lots of veggies and fewer carbs.  Since no-one knew what was wrong with me I thought perhaps I was being poisoned from pollution and food additives.  The doctor offered anti-depressants which I turned down flat.  I felt the last thing my body needed was some additional funky chemicals with uncertain side-effects.

After 18 months I was able to ride a bike but I was still symptomatic with a spike in symptoms coinciding with my monthly period.  I would ride my bike everywhere and then I joined the local gym and started working out.  My work outs got longer and more intense until I was exercising 5 or 6 days a week for 2 hrs.  I was sure buff!!!

Six years later my symptoms returned even though I was sill exercising....
POTSRecovery POTSRecovery
41-45, F
5 Responses Feb 18, 2010

I was diagnosed with POTS 4 years ago at Georgetown after years of being told I was having anxiety. I was told to eat more salt and drink more water. I did and it helped. This month I came across something new that had helped me to feel better than I have in years. My friend was doing shakeology and telling me how great it is. I was reluctant to try because of the price and I just didn't think it would do anything. I was wrong. My symptoms are not totally gone, but they have been greatly reduced. I just wanted to share that this helped me and it may help others as well. I feel like I will never stop drinking them. I feel like a new person! I know it sounds crazy, but I feel more normal than I have in years!!!

My tips for managing POTS are as follows:<br />
* Lotsa salt with food -10,000mg with diet<br />
*Fluids<br />
*Stick with foods on the lower side of the glycemic index<br />
*Avoid caffeine and sugar<br />
*Sleep with a bed wedge or elevate head of bed >6"<br />
*Regular exercise as per Dr. Levine's exercise protocol<br />
*if you only have POTS or OI then re-evaluate any medications your on<br />
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I hope that helps! My blog has more info if you haven't been there yet

Thanks to your info (POTSRecovery) on your blog I have emailed and had a response from Dr Levines office on the exersize protocol to improve POTS. I live in Australia and there is limited information or support groups for this condition. Plenty of info if you are elderly however I'm only 32yrs! My Cardiologist knows of the condition and after my tilt test he now refers to another collegue on the treatment that is best used. I'm looking for positive steps to take to improve my quality of life and things I can do to help myself. I don't like the idea of taking these medications longterm. I found light exersize helped 6mths ago but then i don't know what happened but my blood pressure was getting way too low and doc told me to stop. I also find that my cycle affects symptoms. Any other tips apart from high salt diet? Thanks

After that initial episode I had another a few years later, another 12 years ago when I went to John Hopkins Hospital and they diagnosed me with POTS. 5 years ago I had a concussion which triggered an episode and then 2 years ago I started getting ill again. This time I was diagnosed with Orthostatic Intolerance by an autonomic specialist. The episodes last about 2+ years with 3-6 years apart. Yes, the symptoms go away but can return.<br />
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I have been told that the treatment i am on now will help manage the symptoms (make them go away) but I will need to keep up the regimen for the rest of my life to stay symptom-free. See my bog at to find out more about the treatment I am on and on Dr. Levine.

Ah - those Vitamin B shots! My doc pushed those on me for months, until my cardiologist told him it was probably making me worse! You sure have had this a long time. Can I ask if you still have episodes, and about how far apart are they? I'm 42 and have been sick for about 4 months. I am wondering if it will ever go away, at least temporarily.