Post
Experience Project iOS Android Apps | Download EP for your Mobile Device

I Cant. Im Feeling Potsy

I 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.
LaurenMarieF LaurenMarieF 26-30 3 Responses Apr 10, 2011

Your Response

Cancel

I was diagnosed with POTS in 2011 after I had my son. I've been able to keep my symptoms in check with with water, salt and stockings but recently they've been worse. I've suddenly got pain in my calves and I was wondering if that is a common symptom. All I had before was the lightheadedness, heart pounding and a foggy head.

I’m so glad I stumbled upon your forum. I was diagnosed with POTS in 2013. For years, I would get lightheaded when I stood up from my desk at work. Things would literally go black until I sat down again. I always thought that it was because I just stood up too fast, so I brushed it off as “no big deal” and just continued on with my day. I was attending cosmetology school and was required to stand on my feet for hours each night. My legs would ache and I would get extremely lightheaded. At the time, my teachers thought that I was just being lazy when I said that I needed to sit down. But I knew that it wasn’t laziness. It was something more than that. Then one day, I passed out when getting out of bed to use the restroom. Same thing happened the day after. And the day after that. I got really worried and contacted my primary care doctor to see if it was possibly my blood sugar (I’m hypoglycemic). Lucky for me, my doctor had treated another patient with the same symptoms that I was having. My symptoms included dizziness, lower limbs always going numb, severe anxiety, exercise intolerance, etc. She referred me to a cardiologist in Dallas, Dr. Amer Suleman, who specializes in POTS. After a series of tests, he determined that I had POTS, along with a few other things. Dr. Suleman prefers trying the more natural approaches to treatment. First, he had me see a nutritionist to help me gain knowledge of foods that I needed to stay away from and those that I needed to consume more of. Then I was sent to an exercise specialist that had me do a number of different exercises to see exactly how my body was reacting during strenuous exercise. I have been an avid runner for several years. Before my diagnosis, I was no longer able to do what I loved: run. Based on my results with the exercise tests, it may be a very long time before I am able to get back into what I love. Fortunately, I wasn’t put on several different medications to try and treat my POTS. Dr. Suleman had me start taking Thermotabs (salt tabs) daily. My test results showed that my body was not absorbing salt and nutrients from the food I was eating. I currently take one salt tab, twice a day and it has helped tremendously. As much as I love Gatorade, it sure is nice to not have to drink several bottles of it a day! The only thing that was concerning me about having this much salt intake was my cholesterol. Due to me having a predisposition for heart disease, I regularly have to get my cholesterol checked. Lauren – has your doctor talked to you about the salt tablets? I don’t know if it’s the right thing for you, but it’s definitely worth mentioning. I’m the kind of person that would much rather take the natural approach. Some medications out there today have so many negative side effects, that I’m scared to even try them.

I was told that I needed to wear support hose and I literally laughed at my cardiologist! I told him that I’m only 32 years old… I’m not supposed to wear those until I’m old, right? Lol. I still don’t know how POTS will continue to affect my health as I get older. But it sucks to be my age and have to tell your friends that there are certain things you just can’t partake in. I live in Texas and the summers are almost unbearably hot. I used to enjoy running in the heat… or spending hours out at the lake, but my condition has taken me away from that. I can’t even work towards a career that has me standing on my feet all day, due to this. I do have to say though: it sure is nice to have others with the same condition to talk to I wish you both the very best and hope you are well!

It is very frustrating. I too have pots. I was diagnosed on the lower end of the spectrum but my symptoms are severe and constant. I get anxiety because I worry what my family and friends think. I hate explaining why I have to cancel or cant make it to family functions. I have tried many medications. The latest was midodrine but this a.m. I woke with the worst ice pick headache ever. Luckily my niece was here and able to help me. Also, midodrine doesnt allow me to nap and then Im even more tired than Id been had I not taken it in the first place. My list of other diagnoses' go on and on. Seems like a few things are added every year. My mom always jokes with me, says Im an anomoly. I want to apply for disability because I cannot imagine working and feeling this way, needing to nap, the stomach upset, the brain fog and memory problems, the presl syncope. Up until recently Id been too proud to apply. Im 27 and dont want anymore judgements if Im approved. Guess I cant worry about what others think though. Im trying to keep my head up. I believe we POTsies need to do as much as we can to raise awareness and help each other! I wish you well:):):)