Concerned Husband Posted February 12, 2013 Report Share Posted February 12, 2013 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~ Quote Link to comment Share on other sites More sharing options...
misstraci Posted February 12, 2013 Report Share Posted February 12, 2013 Thank you for writing, it means a lot! Glad your wife is doing so well and awesome about the marathon, how exciting!! Quote Link to comment Share on other sites More sharing options...
roxie Posted February 12, 2013 Report Share Posted February 12, 2013 Thanks for the encouragement. Did Dr Grubb & Beverly give any specific supplements or lifestyle advice that were helpful?Does your wife have any particular advice ? Quote Link to comment Share on other sites More sharing options...
LMG Posted February 12, 2013 Report Share Posted February 12, 2013 That's a great story. I think most of us would love to hear what turned her around? Was she in bed and housebound and was there one or two things that got her up and out? Thanks for taking the time to post!! Quote Link to comment Share on other sites More sharing options...
issie Posted February 12, 2013 Report Share Posted February 12, 2013 I agree ---great motivation to us all.In fact, as soon as I stop typing this reply I'll be getting up and onto my eliptical. Thanks for the encouragement! Glad to hear your wife is so much better. We appreciate any success stories and also anyone who is trying to create POTS awareness.Thank You!Issie Quote Link to comment Share on other sites More sharing options...
E Soskis Posted February 12, 2013 Report Share Posted February 12, 2013 Bless you dear man! Bless you for loving your wife, standing by her, and assisting her in her quest to identify her disorder. She is better not only because she is determined, but also because she has such wonderful uplifting support. Thank you for sharing with us - it is so refreshing to know there are still "real" men out there! Quote Link to comment Share on other sites More sharing options...
Altruism Posted February 12, 2013 Report Share Posted February 12, 2013 Thanks, I needed to read this today! Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted February 12, 2013 Report Share Posted February 12, 2013 Beautiful! It's nice to hear a spouse being so supportive. I am so happy for you both that things are looking up! Good luck with the half marathon! Quote Link to comment Share on other sites More sharing options...
imapumpkin Posted February 13, 2013 Report Share Posted February 13, 2013 Thank goodness! Thank you for sharing your experience and your wife's experience. Always good to hear successful improvement stories. Quote Link to comment Share on other sites More sharing options...
Mydoggielovesme2 Posted February 13, 2013 Report Share Posted February 13, 2013 So nice to hear the other side of the story. Thank you for taking the time to post it. Having a support system is so important, whether family, friends, or this forum. We end each other, as your post so beautifully expressed. Hope the marathon goes great! Quote Link to comment Share on other sites More sharing options...
Joann Posted February 13, 2013 Report Share Posted February 13, 2013 I love to hear these stories, I hope more of them continue to post. It gives me hope that I too will be better. Your wife is an inspiration, but so are you. To have a partner every step of the way, is so wonderful. You prove what a great person you are by posting this for all of us also.As someone else mentioned if you could maybe tell us a little more about her diagnosis and what helped in her recovery, it would be even greater!Thanks so much. Quote Link to comment Share on other sites More sharing options...
looneymom Posted February 13, 2013 Report Share Posted February 13, 2013 Thank you for sharing your story. I am a parent of a 12 year old boy that was diagnoised with POTS in December of 2011. Being the care giver of someone that has POTS is not an easy job. So glad to hear that your wife is doing better and would love to hear about things that helped her get back to a more normal life. Quote Link to comment Share on other sites More sharing options...
songcanary Posted February 13, 2013 Report Share Posted February 13, 2013 It was very kind of you to take the time to write and I agree with the others who call you a real man. Even when we are sick as dogs, the support alone is precious. Very best wishes to you and your wife! Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted February 13, 2013 Report Share Posted February 13, 2013 I am impressed - to say the least - by your wife's story and by the fact that you've been there with her, for her, every step of this journey. She is really blessed to have you in her corner.By sharing this you give us - those that are still struggling - much needed hope that one day we'll be able to write our success stories as well.Thank you for posting!Alex Quote Link to comment Share on other sites More sharing options...
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