Concerned Husband

I just wanted to say I do feel for you guys. I've seen my wife deal with this illness for a few years now and it breaks my heart knowing there are so many of you guys dealing with the same things. I understand the frustration you're going through but try to keep hope alive. My wife went from being where you guys are now to getting medications that worked for her. Don't give up and try not to bite anyone . Seriously though, I'm praying for each of you.

As my name implies I am the husband of someone that suffers from POTS, diagnosed by Grubb with the Hyperadrenergic form to be specific. I’ve been a long time lurker on these boards but haven’t posted. I just wanted to let you know there is hope if you stay positive and keep taking steps forward in your journey. In August of 2009 my wife started having a run of SVT while at work that later had her in the emergency center due to stabbing chest pains and shortness of breath. They found nothing and sent her home saying it was just stress. After a few doctor visits during the next several days we ended up back in the ER for the same symptoms. Over the next year she saw doctor after doctor who each ran their set of tests, scratched their head and either pushed her off or gave us some diagnosis that fit their field but not her condition. Some even gave her a new medication to try. She was very limited for almost a full year and everything seemed like a struggle for her. I spent a LOT of time online researching medical information and learned more about the heart, lungs, ANS, etc… than I ever wanted to. In May of 2010 we saw Dr. Grubb and things started coming together. We knew she was on the right track and it was just a matter of time until she got the right combination of meds. Since seeing Dr. Grubb (and Beverly) he’s ran several tests and had her on numerous different drug regiments to try (many making the symptoms even worse). Between Dr. Grubb and a local Dr. that specializes in non-mainstream illnesses my wife’s drug and supplement cocktail is getting close but still being fine-tuned to work for her. Today I’m proud to say she’s functioning at a very acceptable level, especially considering how bad things were just 2 years ago. She’s back to work, living a functional life with many more good days than bad, has started a non-profit organization to raise awareness for POTS, and most impressive to me is training to run a half marathon in May to raise POTS awareness. I can’t link the website but if you google ‘pa for pots awareness’ you may find it . She still has bad days but they never keep her down and she shows incredible courage to persevere every day. Some days I feel lazy and take it off and there she is forcing herself to exercise no matter how she’s feeling (makes me feel like a bum knowing she can't breathe and how sore she is and there she goes while I watch TV...). 2.5 years ago was the scariest time of my life; not knowing what was going on with my seemingly healthy wife. The next year was extremely frustrating because no one knew how to help her. While my hope was starting to fade and I was getting stressed out she kept chugging along and wouldn’t give up. She knew there was an answer for her and she won’t stop until she finds it. She is a true inspiration to me and everyone else around her (proven by how many people are running for the cause in May). I still shake my head in amazement when we train together and I think back to where she was. I can’t wait to see her cross that marathon finish line. It will be one of the proudest days of my life. I understand how hard it is for many of you on these boards and I hope you can find a little inspiration in her story. It breaks my heart that anyone has to suffer from this disorder like you guys are. No matter where you are in your journey please don’t give up hope. Eat healthy, force yourself to exercise, take one day at a time, and if you don’t get answers from your doctor go see a new one. Just know that YOU CAN start feeling better and with a little luck on your 'cocktail' and a lot of prayers hopefully it will be soon. People all over the world are raising awareness for this disorder which will bring new research findings in the future. It’s not what happens to you, but how you react to it that matters. ~Epictetus~