I Cant. Im Feeling PotsyI can't... I'm feeling POTSy. I feel like I say this all the time. Luckily the people who are around me understand, which has not always been the case. I started getting POTS symptoms in August 2008. There was no "triggering event" and work was not stressful at all. I went to multiple cardiologists, neurologists, and ER visits trying to figure out what was wrong. My mom did the research and found out I had POTS. A finally found a cardiologist that was willing to work with me as most didn't understand and just wanted to push me to the side. I tried toprol and had a severe allergic reaction. Then florinef... which worked for awhile but just had to keep getting increased. Then Midodrine with an allergic reaction. Then Methlphenadate which didn't help. Then my mom finally found Dr. Beverly Karabin in Toledo, OH. I had my first appointment with her in August 2009. This appointment was eye opening to say the least. She spent hours with me understanding all my conditions and explaining the condition to my in depth. My mom is discovered why all her life she has felt so terrible. POTS is hereditary. I tried lexapro which helped until after a busy season. The stress from work became a triggering event in May 2010 which I started in with my POTS symptoms again. Since then, I have not been able to find a medicine that has worked well enough that I can do all the things like I used to do. I was unable to work for 5 months which is hard when you have to buy so many medications and appointments. I was a ballet dancer since a child and took classes for years after college until POTS. I traveled on vacations all the time. I used to go out with my friends all the time and have drinks. Everything since then has changed. I am lucky enough to go into work, walk 5 minutes to my train station (I live in Chicago a very unfriendly city to people whom can't walk far), or even remember what I was doing in the middle of doing something. I have missed so many life events, vacations, or even doing the every day activities without worrying if there is going to be a place for me to sit. I honestly think Gatorade could survive on my weekly sales alone.
Its been almost 3 years that I have had this. I want to raise awareness because I think its completely misunderstood and overlooked. I fear that I may get fired from my job because I have missed so much work and can't work and think clearly like I used to. And I wonder how I can keep a new job. I just hope the stress isn't bad. That seems to be my triggering event. I have been on 15 medications... I think. I haven't written them all down so I can't remember. I wear compression hose which are hideous. I'm not sure how I will wear them in the summer because they make me hot.
My symptoms include:
- Brain fog
- no memory which makes it impossible to pass the CPA exam or even function well at work
- chest pains, heart pounding, heart racing
- leg pain, swelling, numbness
- shortness of breath
- extreme dizziness
- heat intolerance
- standing/sitting intolerance
- head swooshing sound/headache in the back of my head near the spinal cord
- unbelievable fatigue and exhaustion doing the smallest tasks (like brushing teeth)
- exercise intolerance
- and the list goes on, but I forget
Fortunately I have an amazing family and boyfriend that are very understanding and help any way they can. I just wonder when I'll feel normal again. The "good" days make me sad because I only wish I could feel that way all the time. I miss so many things in life, but I maintain my positive attitude no matter what. I have this for a reason which I think is to help others with it by raising awareness.
If you have questions, please reach out to me because I feel like I have tried ALOT of things that I can't even start listing. I just want to help my fellow POTSies because I know how scary and upsetting it can be at first. Only we understand each other. We are not lazy, we are exhausted. We are not "not listening", we can't remember. We are not "just out of shape", we have exercise intolerance and stairs are our worst enemy and we are short of breath. We are not anti-social, we can't stand up and mingle. We are not gatorade "lovers", we have to consume rediculous amounts of water and salt (which I've always ironically hated).
I hope that you all feel better. Remember to take it easy and love the good days and overlook the bad days.
"I walk. I fall. I get up. Meanwhile I keep dancing" ... Eventually I will get there.