POTS Treatment Center Week 1

So far the Treatment Center has been very informative and helpful. The basis of the treatment program is learning to retrain the way your Autonomic Nervous system works and responds to stressors. In the normal person your body is mostly in parasympathetic mode or "rest and digest" mode. When a traumatic event takes place your sympathetic nervous system is activated and you respond by either fight or flight .In POTS patients, we are always in fight or flight mode because our Autonomic nervous system no longer functions appropriately and sees everyday life as a stressor. Imagine getting in a car accident , you get that rush of anxiety, your heart races , you get short of breath, and you may even feel the urge to get sick. This is the reaction my body has to standing up . When lying down I am in rest or digest mode but the act of being vertical triggers fight or flight. The treatment program helps teach symptom management by teaching ways to recognize when your body enters this mode and how to "calm down " your autonomic nervous system. The goal is to eventually spend most of your time in parasympathetic mode and train your nervous system to act appropriately.

The program consists of a three hour session each day that primarily focuses on using biofeedback to allow you to physically see the way your body is reacting ,making you more aware of the things that need work. So far I have used three methods of biofeedback that have already started to help. 

1.EMG : electrodes are placed on both shoulders to read the level of Muscle tension . By seeing  the level of tension on the computer screen it increases awareness of tension and allows you to relax even more. 

2.Heart Rate Variablility: the goal of this training is to get the heart rate and breathing rate to be in total coherence (at the same speed)

3.Thermoregulation: a sensor placed in the index finger takes the temperature which is pretty low in people with autonomic dysfunction . The goal is is to keep the peripheral temp (hands and feet) above 90 degrees which means that blood flow is regulated and not all pooling to the head (this is what causes flushing of the face)

So far I have been able to increase my peripheral temperature to 95 degrees and have mastered level one of heart rate variability training. All of my training has taken place in a overstuffed comfy recliner with my feet up . If I am able to maintain this progress I will be able to start training next week while sitting with my feet on the ground and then standing. Sounds simple , but it's a big deal :) Today I was able to walk for about 6 or 7 minutes and the highest my heart rate went was 124, a huge improvement already . 

This beautiful park  ( Harry Moss Park ) full of fall leaves is right down the street from the POTS Treatment Center so we stopped to hang out and of course have a little photo shoot ;) The weather was so nice today, in the low 70's . We've been gearing up for the ice storm thats heading for Dallas, but so far it hasn't happened yet .

POTS Treatment Center

As most of you know I will be heading to Texas tomorrow to start my two week treatment program to help me learn to manage my P.O.T.S symptoms a little bit better and hopefully slow down the progression of my illness. I will be trying to post updates as often as I can to make sure to keep you all in the loop but I'm not too sure how often it'll be .Thank you all for your encouragement and interest in reading about my journey. 

On a different note , I had purchased a new product a few weeks ago called the chemo cozy . It's a sweatshirt that you can wear when you are getting infusions via port (a central line located in your chest ) or PICC(a central line placed in your upper arm. The creator of the product is a cancer survivor who came up with the idea for the sweatshirt during his chemo infusions . For those of you that aren't familiar with ports or PICCs , the line is an internal line with the tubing on the outside (kinda like an IV) since the lines are located in the chest or in the arm it makes it hard to wear any kind of jacket and as we all know hospitals can be freezing ! So he came up with a fleece sweatshirt with zippers in all the access areas that way you just thread the iv tubing through the zipper and you can stay warm! Genius! The jacket itself looks a lot like a comfy north face sweatshirt ,so it's cute and casual and doesn't scream medical supply lol .Mine came In the mail today and since it was my infusion day I thought I would try it....highly reccomend it ! It made it  so much easier than sticking the tubing down the sleeve of my sweatshirt and having the cold tubing against my arm . It would be a great gift for people getting chemo ,transfusions, or medications on a long term basis . 

     Thanks for reading ! Talk to you all soon :)