Pots Is Destroying Me

my story starts in the summer of 2001, while i was driving home from a race my vision went blurry and had chest pains. I had to pull over for awhile, when we got home i kept getting dizzy so we called an ambulance, after many test they told me it was heat stroke and sent me home. this continued until december with many episodes. had a loop recorder put in because of low blood pressure and was given a script for florinef to increase blood volume, also have to take salt tablets and many vitamins. The problem now is i'm almost always exhausted with blood pooling in legs and stomach. My normal activities have dwindled to a nill, and when I feel good enough to go out in public people say to me "you don't look sick to me." I'm so tired of hearing this.
kwashburn kwashburn
41-45, M
3 Responses May 10, 2012

My daughter was just diagnosed with POTS...she passes out CONSTANTLY!! Sometimes it happens 15-20 times in an hour. It seems like a lot.

I know you've probably heard this all before, but for postarities sake, I'll state everything I can, even the redundant parts. First, many with POTS take narcotics. This actually increases the pain. At first, the narcotics alleviate the pain, but then the POTS adjusts to them. This magnifies the pain, but can be rationalized away as the POTS getting worse. Typically, the next step is to increase the dose. From there it is a downward spiral. If you are on narcotics, get off of them. If you cannot do it on your own, seek rehab. Second, drink lots of water. A rule of thumb, if you can see yellow in your urine, you need to drink more water. Third, salt. Eat a lot of it. Forth, meals. During digestion, the blood pooling around your stomach is freed up. Thus, with POTS, it is better to eat five to seven small meals than three large meals. Fifth, exercise. I know it's hard, but to free up the blood in your legs, you need to exercise daily. Exercise is the process of breaking down and rebuilding your body. There have been some cases where exercise has actually cured a patient of all their POTS symptoms. Basically, you need to train your body to resist orthostatic intolerance. This can be done by running. In this, distance running does you no good. You need to run at a speed that will make your heart speed up. At first, keep it in short bursts. Run full out for a minute, then walk for two or three minutes. If you keep doing repetitions of this, your orthostatic intolerance should be minimized. While walking after a burst, measure your heart beat. If it gets around one-hundred eighty or higher, stop. You've felt the pain of POTS since 2001, compared to that, what is a little exercise. If you have any questions, comments, concerns, need help with POTS, or simply need someone to rant at, feel free to either post here or contact me at gone119@hotmail.com

The physical exertion of POTS is unbelievable. The physical aspect can break me down mentally with in seconds. I can relate and I understand. You are not alone. Its good to just let it all out. Don't worry about what people say. No one can come close to understanding what you are going through unless they have gone through it. A positive is that we feel sick but we get to look great!!! Can you imagine what we would look like if our looks reflected our illness? That would be too cruel, right? So at least we have one thing going for us.<br />
The average Joe has no clue of our daily struggles, even the average doctor is out of the loop.<br />
This POTS crap is horrible. It takes a physical toll, followed by a mental toll. Don't let it get your spirit. Your spirit is what can carry you through this. Inner strength is required. Inner strength, you have already acquired just by waking up each day and living with what you are living with. I know how strong you are. <br />
Just let yourself have the bad days and my o my enjoy those good days when they come. Don't worry about the "you don't look sick"comments. Yes, it is soooooo annoying but they don't know. They don't understand. They really are clueless and they don't know any better.<br />
I know how sick you are. I'm sick too. My heart goes out to you. I commend your ability to get up and try regardless of how you feel or how others will view you. You may not look sick, but you are sick. Don't stop getting out of he house on your good days and if someone upsets you, let it out on here.