www.helpdreams.org

If you would like to share your story about what the rollercoaster of dysautonomia has been like for you, please send it to sarah@helpdreams.org. As soon as possible, your story will be added to the blog section!

You may also let others know what a "good day" or "bad day" might mean for you. If you would like to send in a photo, feel free to do so!

"All our dreams can come true, if we have the courage to pursue them."
- Walt Disney

Shortly after graduating Boot Camp at Parris Island, SC and Marine Combat Training at Camp Geiger, NC, I was sent to Red Stone Arsenal, AL to train to be a 2311/ Ammo Tech.

I was finally living my child hood dream of serving this beautiful country as a Marine. I knew that my life was chnaging, but I never expected it to change so drastically.

While I was standing in a promotion ceremony on August 2, 2004, I started to feel a multitude of symptoms. My body began to sweat and I kept feeling hot flashes and chills run through my body. I was extremely nauseous and my head was pounding. Just before the command of "fall out" was given, the world around me started spinning, fading, and then everything went black. I literally feel out.

When I came to, a lot of Marines were crowded around me trying to pick my limp body up. I slipped off again. The next time that I came to, the platoon sergeant was carrying me inside to the company office.

At first it was no big deal. I didn’t even go to medical. It isn’t uncommon to see a Marine faint while standing at the position of attention for a prolonged amount of time. We thought that perhaps I locked my knees or maybe I was a little dehdrated from the morning physical training (PT).

I felt completely fine until a few days later when I fainted again at the gym. This time I was taken to medical. They took my vitals and saw that I had tachycardia so they said that I was just dehydrated and needed to drink more water and add more salt to my diet.

Even though I started drinking water all the time and added salt to just about everything, I still continued to feel dizzy and lightheaded. I started to faint everytime that I ran or tried to exercise. Some times just standing up made me faint so I was sent back to the hospital. There I was diagnosed with vasovagal syncope and the doctors told me that it was no big deal. All I had to do was stay hydrated and I would be just fine but if I continued to pass out then I would face a medical discharge.

Shortly after the stay in the hospital, I was able to continue my studies, graduate and was sent to Camp Lejeune to work at the Ammunition Supply Point (ASP). Upon arriving at a new duty station, Marines are to take another Physical Fitness Test or PFT (my prior score was a 295/300). I told the chain of command that I had been fainting but I still ran the PFT any way actually hoping that I would get a score of 300. I completed over 100 crunches in less than 2 minutes, I did the flexed arm hang for over 70 seconds, and I even ran the 3 miles. On the run I started out at my usual pace but felt severe chest pain and it was hard for me to catch my breath. After about half a mile, I became extremely dizzy so I started running slower. The other Marines tried to motivate me to pick up the pace so that I would get a good time. I tried very hard but my body just would not allow me to push myself any harder. Just as I passed over the finish line, my body fell limp. I had fainted again and my final score was a 257, which is still a first class PFT.

I continued to get new symptoms every month and I was fainting very frequently, even while sitting. Once I convinced the company that I was not faking it or trying to malinger, they actively began helping me in everyway possible. A sergeant was sent to every appointment with me to make sure that something was going to be done. Medical however kept telling me that it was all in my head because all the test they ran came up "normal". Two of my officers even went with me to the mental health appointment because they knew that it was not all in my head.

Because I always had tachycardia, the corpsmen kept telling me that I was just dehydrated and I needed to drink more gatorade and water. I was drinking at least 10 bottles of gatrorade each day matched with at least that much water or more. I was even still fainting after they gave me IV fluids.

In February 2005, my case manager arranged for me to have an appointment at the National Naval Medical Center in Bethesda, MD. There I was given a Tilt Table Test by cardiology and was diagnosed with Neurocardiogenic Syncope (NCS) which is the same thing as vasovagal syncope that I had already been diagnosed with in Alabama. Because I was having severe none relenting migraines, the neurologist at Bethesda gave me Inderal Beta- Blocker as a preventative. After the appointments, I was sent back to Camp Lejeune.

For the next 3 months I only had occasional dizziness or nausea and was entirely faint free! I was able to run PT again and kept up with the other Marines. I was even allowed to work with the ammunition again. I seriously thought that I was cured and was extremely happy with my life again.

Then one morning I woke up, got up out of bed, and fell flat on the floor. All of a sudden the Inderal had become my worst enemy. I began fainting non-stop all day long. The other female marines had to dress me, carry me to and hold my up on the toilet, and help me in a multiude of other ways. I was sleeping about 20 hours a day. Obviously something needed to be done so I was sent back to Bethesda. There I saw a completely different team of doctors, some of who were from Johns Hopkins. This team diagnosed me with Postural Orthostatic Tachycardia Syndrome (POTS) which is a form of dysautonomia. I was immediately taken off of the Inderal as it was the cause of my sudden crash and put on several other medications. After spending 7 months at the National Naval Medical Center, I was finally medically retired in March of 2006.

To this day, I am still fainting frequently, I am in and out of hospitals, and still getting diagnosed with many more things. Every month I get new symptoms that I must "adapt and overcome."

At this point, there is no cure for POTS. For some, treatments can greatly improve their quality of life. On the other hand, many others have not found a treatment plan that has helped, like me. That is why I spend my "good days" trying to spread POTS awareness! My new dream is to help others and let them know that they are not alone.

NO person should ever go to the doctor and be told that the symptoms they experience are all in the head like so many of my friends and I were told. I am very passionate about trying to help others because I know what it is like!

So many times I have been told that there is nothing that can be done for me and that I just need to learn to live with all the symptoms.

WELL I DO NOT ACCEPT THAT!!! I DO NOT ACCEPT THAT FOR ANYONE!!! THERE IS HELP SOME PLACE IT JUST HAS TO BE FOUND!!!

On August 29, 2007 I was frustrated with myself because I didn’t think I was doing enough to help others and spread awareness. I started researching dysautonomia even more and decided that if I really wanted to make an impact, I needed a lot more help. That is when I thought to create a nonprofit organization. I didn’t say anything about it until August 31, 2007 because I wasn’t sure what others would think about my idea. I was pleasantly surprised when everyone seemed to love it! I spent every second that I was awake thinking about what the name, mission statement, logo, advertisement, web site, first event, and all sort so other things should be.

On August 5, 2007 DREAMS was established. I personally promise to help those with dysautonomia in any way that I can. I promise to fulfill the mission statement of DREAMS.

If there is anything anyone needs just contact me sarah@helpdreams.org

Thank you all for everything,
Sarah Price, President of DREAMS