It was brought to my attention that October is POTS Awareness Month. I have wanted to do a post on POTS, but honestly it seems overwhelming to try to condense POTS into one blog post. The confusion that surrounds the syndrome, along with the vague understanding by the medical community makes a concise explanation impossible. Also, because there is no basic treatment plan, every patient has to endure experimenting with numerous drug options. That is why it is imperative to get with the right doctors. I have been given many different opinions from numerous doctors since being diagnosed with POTS, but I now have my core group of doctors who I rely on when I need medical advice or treatment. One is my local internist. He has actually helped me as much as any doctor I have seen. Also, I go to Duke because they have a POTS clinic and they have been remarkable in trying to help me find a treatment plan.
I believe it is extremely important to raise awareness as it takes an average of over six years to actually get a diagnosis for POTS. It took me eight years to receive a formal diagnosis. That means numerous doctor visits, tests, wasted time and money, and often walking away with no clear answers. It’s extremely frustrating as a patient knowing something is wrong with your body, but not quite being able to pinpoint what the problem may be. I thought it would be helpful to share some info here that will give you a quick insight to what POTS is and how it affects your body. Much of this info I copied from http://www.myheart.net. If you want more details, go to their site.
Here are a few more descriptions and facts….
To date, there is no cure for POTS, only treatment for the symptoms. Every story is different as some people fully recover, some recover somewhat, and others grow progressively worse.
When I was pregnant with my daughter I developed tachycardia. My pregnancy with her was quite difficult. After delivery, I just never seemed to go back to “normal”. As my daughter began to get into her toddler years, I started noticing different symptoms besides the tachycardia. I was beginning to have fevers on a regular basis which can be best described as a mild flu. I would feel achy, cold, extremely fatigued, develop facial rashes, etc. I also developed food intolerances, something I had never dealt with prior to my pregnancy (I eat gluten and dairy free for those who want to know. I have eaten this way for years now. It helps my rashes, joint pain and some stomach issues by removing those from my diet).
At first, the fevers lasted a few days and then in time they would last up to a month. I was sent to Duke to a Rheumatologist because they thought I might have lupus. But, only one test came back positive and the other one came back negative. I continued to see this doctor until I realized every time I visited the office, the same tests were being done and I was getting no where. I finally just asked if they were waiting for the second test to come back positive and she basically said yes. I parted ways with them because I wanted more than a diagnosis, I wanted to be proactive in finding more quality of life. And I was getting neither a diagnosis nor increased quality of life, so I continued my search. I just want to say that Duke would probably have been more helpful at the time if I had been referred to the cardiology unit, but because of the concern for lupus, I was never sent that direction.
It was at this time, I found my current doctor (local internist). I cannot say enough about how important it is to find a doctor who knows their stuff when it comes to your illness. It doesn’t mean they have all the answers, but they also aren’t looking at you with a completely blank stare. I remember my first visit with this doctor because I was physically sick and mentally drained. I really didn’t expect a whole lot from the visit with my new doctor because after a while you no longer get your hopes up that you can be helped. If you are in that situation right now, keep going! Don’t give up. It takes a lot of searching on your end and many times you will walk away feeling defeated and frustrated, but when you finally get connected with the right doctor, it makes all the difference!
My current doctor has worked with me for the past 4 years. He immediately changed my treatment plan, and for some time, I was slowly improving. I was never symptom free, but I could function at a higher level. But then November 2015 came around and everything changed. My husband and I were in Charleston for his class reunion from the Citadel. We were both so excited because it was the first time in years that we had taken a long weekend just the two of us. Also, it was the first time I felt well enough to make the trip as traveling always seems to make me sicker. Everything was going normal. We took walks on the beach collecting shells, went shopping, and had a delicious dinner downtown Charleston. We went back to the condo to sleep and woke up the next morning ready to go to his reunion.
It happened to be unusually hot that day, but I didn’t feel sick at all. We walked around the campus, ate a little bit, watched the parade, and then headed over to the pregame festivities before the football game. Everything was outside, but I was drinking water all day (obviously not enough) and had eaten a little bit. As we were standing there everything seemed unusually loud to me. Suddenly, I couldn’t hear anything except for the sound of many voices. I walked over to meet one of my husband’s friends and my knees started to buckle. I walked away because I had no idea what was happening and I didn’t want to draw attention to myself. But, I quickly realized I was not ok. So, I went to my husband and said, “Something is wrong. I think it’s my blood sugar.” By that point, I was trembling badly. I sat down and asked someone for a piece of cake. I was going to eat the icing off the top and see if that helped. My husband brought me a tea, but even after drinking it I was not okay.
So he grabbed me, threw my arm around his shoulder and we tried walking to the car. I was stumbling and swaying, and my arms and legs were going numb. We finally had to put me down on the sidewalk while my husband ran to get the car. I couldn’t walk any further so I sat there on the curb slapping my legs trying to get feeling back in them. We went back to the condo because I really thought it was hypoglycemia and not a medical emergency. I rested that evening and the next morning we were heading back home to go the Carolina Panthers game (you know when they were playing AWESOME!). But, within an hour of waking up, my symptoms started again and Trey had to carry me out of the store while we were grabbing something to eat for breakfast.
I went three times to the ER over the next six weeks. I wasn’t getting any better, but no one really knew what was happening. After my third visit to the ER, they admitted me to the hospital. At that point, I couldn’t walk and I was even having a hard time swallowing. Every POTS patient explains the sensations differently, but for me I felt like I was in an airplane. It felt as though I was flying at the wrong altitude and the pressure in my head was beyond uncomfortable. I would have a sensation that started in my head and would shoot down my spinal cord to my hand and feet. The sensation makes me feel like I am about to pass out and it happens over and over. Everything is heavy and then it goes numb. Once admitted to the hospital, I had many tests run. It was during this time, I was formally diagnosed with POTS. I failed the tilt table test quite miserably.
The local hospital did not know what else to do once diagnosing me, so they transferred me to Duke(I stayed eight days in my local hospital and ten days at Duke). Duke is POTS heaven (although, I’m certain POTS is not in heaven). They understood EVERYTHING! They also tried everything they could to improve my symptoms, but I could not tolerate any of the newer meds. I received so much information during my 10 day stay there. I learned new coping skills, new treatment plans that didn’t include meds(although I take lots of meds too), and so many tips on how to live with POTS. I didn’t leave Duke better, but before I was admitted they told me they couldn’t make me better rather they only hoped to stabilize me. I left knowing I had a place to go when the flare ups get really bad. I could go into numerous details at this point, but I don’t think it’s necessary. If you have any personal questions, you are more than welcome to message me.
Our life completely changed last November and continues to remain quite different than before. I am still unable to drive except for very short distances. I use a wheelchair in larger stores. I do not go anywhere where things will be extremely loud because I cannot tolerate the noise. I mostly stay home because I stay the most stable that way. My children need to see a mother who is stable. It gives them confidence everything is going to be ok. So, my choice is to spend my extra energy on my family instead of trying to run around everywhere. I do go out some and enjoy it, but I always pay a price for going places. Every decision I make, I think of the consequences and if they are worth it. There are some things that are non negotiable for me. For example, my children’s birthdays, family get togethers, really anything where we can make memories. But, other things have become less important like my love for shopping, running (although one day I believe I will be strong enough to do it again), and wasting my time and energy on things that have no real purpose.
I guess what I am saying is POTS came in and turned our world upside down, but in doing so, we have experienced something that has made us rethink our priorities. I know who my true friends are. I realize so many things we consider to be big deals are really small in the grand scheme of things. I have learned that Jesus truly walks with me every step I take. He has spoken to my heart in ways I have never experienced before. So although on the outside, this is an ugly mean illness, it hasn’t stolen everything from me. In fact, it has given me the opportunity to truly trust in the power of Jesus Christ. It has shown me, I am far stronger than I ever realized. I have learned that the deep strength I have found is not my own, but a gift from my Father in heaven. What seemed to be a clear path to discouragement and disillusionment, actually became the very path that gave me the courage to share my journey. I call it my bedpan experience…ha! Because, in my weakest moments when I was not allowed to leave my bed in the hospital, He showed up in such a mighty way. I know the suffering and pain this illness has brought will not be the end of my story. He makes all things beautiful in His time.
So thanks POTS…I hate you and want you gone! But, without you I would never have experienced the freedom I have found in Christ. I have learned the very thing that seems to hold you down, can be the catalyst for what sets you free. My body is not free from POTS, but my heart’s desire is to share my story with other broken-hearted people. People who think their suffering will never end. I want you to know there is hope in Jesus Christ. He can give you life in the midst of the storm and illness.
Here are a few pics of our journey thus far…I wanted to share these with you to show that even in a painful season joy can be found. Moments can still be made, albeit different from before. Life is fragile, beautiful, tragic, and inspiring. Life in Christ gives you wings to soar even when everything around you seems to be falling apart. It doesn’t mean it will be easy, but His embrace will carry you in the darkest nights of your soul.
My babies came to visit me before I left for Duke. This picture is hard to look at because I cried for hours when they left. I knew I was going further away from them and it broke my heart. The pic on the right is my hubby spending the weekend with me at Duke.
My amazing friend comes to my house to cut and color my hair now since I cannot go to the salon!
I wear compression hose 24/7…thigh high to be exact. Don’t get all jealous now! Even with the hose my feet turn blue due to blood pooling. But, as you can see by the pic on the right, my feet turn much bluer and red without the stockings.
After 9 months, I was able to go out to eat for the first time with my family! I also was able to go back to school shopping with them. These may seem like small achievements, but for me, they are monumental every time I am able to do something new.
I was able to swim a few times this summer and make it to my daughter’s Birthday party!!!
I was able to go to a family event and last two hours! I was sick for days after, but it was worth it!
And my recent excitement was getting my nails done!
And I pray many more to come….much love!