Deb Posted April 14, 2008 Report Share Posted April 14, 2008 It's been over two years since I wrote on this forum. I learned so much here and more than anything else, it helped me to get through the bad times. After many months of feeling tired, losing weight, fainting spells, hospital visits, lost time at work, etc, I was diagnosed in Dec of 2003 with POTS at the University of VA Medical Center where I also worked. I had the strongest reaction on the Tilt Table Test of anyone tested there, and I still hold that title. My illness was caused by a virus that attacked my nervous system. I consider myself one of the lucky ones because even though it took a while, but my nervous system finally healed, and I am mostly as healthy as I was before POTS.I remember reading here that the people who recover don't write anymore. For the most part, I suppose that's true. I DID recover, and I did stop writing. In my defense, though, we had a reorganization at work and then my husband and I moved. They don't actually sound like very good excuses, so they? I still have an occasional anxiety attack, but I've learned to deal with them, and only need a Lorazapam tablet about once a month. I still haven't found another job since we moved, but life is slower here in the country and it's been good for me, especially with my son now married and a baby granddaughter, too! Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted April 14, 2008 Report Share Posted April 14, 2008 It was so good to hear your news. It is wonderful that you are doing so much better!And your a grandma too!take care,tearose Quote Link to comment Share on other sites More sharing options...
Megan Posted April 15, 2008 Report Share Posted April 15, 2008 That's great! It also gives me hope, as my POTS was likely caused by a virus, also. (And since I just turned 20 my dr thinks I have a good chance of growing out of it.) Glad you're doing well!Meg Quote Link to comment Share on other sites More sharing options...
dsdmom Posted April 15, 2008 Report Share Posted April 15, 2008 Deb, Thanks for sharing - that is wonderful news! I'm curious - were you ever tested for/did you have any autonomic neuropathy? Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 15, 2008 Report Share Posted April 15, 2008 Hi,Thanks for posting your success story. Quote Link to comment Share on other sites More sharing options...
nadine Posted April 15, 2008 Report Share Posted April 15, 2008 wonderful --THANKS FOR SHARING! Did you find any specific medications or treatments that were helpful for your recovery? Quote Link to comment Share on other sites More sharing options...
Deb Posted April 15, 2008 Author Report Share Posted April 15, 2008 In answer to dsdmom about autonomic neuropathy, yes, I did suffer from it. I had periods of freezing or burning up, I had irritable bowel syndrome, I had trouble swallowing, I lost a LOT of weight because I could only eat a few bites before I felt full. They were the most troublesome problems. All of those finally went away. The only neuropathy I still have is a slight numbness in my little fingers, mostly my right one. Quote Link to comment Share on other sites More sharing options...
Deb Posted April 15, 2008 Author Report Share Posted April 15, 2008 To Nadine,Despite the side effects, Florinef helped me a lot. I also drank several quarts of water and added salt to some of it every day. That combination seemed to keep me hydrated. I forget the name of the drug I was on, but it kept my BP elevated so I could function. I would faint or nearly faint every time I stood up when I was at my worst. So, that really helped, too. I paced myself so that I wouldn't get overly tired. That was hard, because I love to be outside but I tired so easily I couldn't do more than walk for a few minutes on the days I worked. Resting between periods of activity (laundry, dishes, etc) really helped. I also hired a girl to do the heavy cleaning every other week for me. It was worth the cost. I also realized I didn't have to have a spotless house. That was a great lesson. Quote Link to comment Share on other sites More sharing options...
dsdmom Posted April 15, 2008 Report Share Posted April 15, 2008 Deb,Check your private messages - I sent one. Quote Link to comment Share on other sites More sharing options...
lalalisa Posted April 15, 2008 Report Share Posted April 15, 2008 Deb,I really appreciate your post. Thanks for encouraging us by reminding us that some do greatly improve and even recover.Take care,Lisa Quote Link to comment Share on other sites More sharing options...
runningshoe Posted April 16, 2008 Report Share Posted April 16, 2008 Thank you so much for writing this post!! It was great to hear. How did you know yours was caused by a virus?? Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted April 16, 2008 Report Share Posted April 16, 2008 Thank you for this post and updating us on what has worked for you! It is definitly helpful to see a glimmer of good in regards to these diagnoses and seeing what is helpful for recovery. Quote Link to comment Share on other sites More sharing options...
ellen Posted April 17, 2008 Report Share Posted April 17, 2008 Yes thankyou Deb! Your post is a big encouragement. Are you completely off meds? Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted April 17, 2008 Report Share Posted April 17, 2008 wow thank you for sharing your success story with us.. it surely is encouraging and good to hear of ppl who acutally get better from all this... i'm really very happy for you!!!!!! Quote Link to comment Share on other sites More sharing options...
Deb Posted April 17, 2008 Author Report Share Posted April 17, 2008 Yes, I am completely off the meds. Like you, I also have asthma and other allergies and eczema, so I have to take preventive medications. I started having anxiety attacks because of or along with the POTS, and I still get them. I use Lorazapam only when I feel one coming on. Thankfully they are very infrequent now.I think the meds were a real life-saver for me. I couldn't get myself to the bathroom alone before I started on the midodrine and florinef. They were like magic. Don't get me wrong, I felt bad most of the time, but I had some good days, too, and I was able to go back to work. I was sick for about two years.I hope your own health is improving.Yes thankyou Deb! Your post is a big encouragement. Are you completely off meds? Quote Link to comment Share on other sites More sharing options...
Eillyre Posted April 17, 2008 Report Share Posted April 17, 2008 Wonderful news, Deb! I'm so glad to hear that you're doing well. Thanks for taking the time to give us an update!Angela Quote Link to comment Share on other sites More sharing options...
Sunfish Posted April 17, 2008 Report Share Posted April 17, 2008 hi deb - thanks for taking the time to give us your great update & congrats on how well you're doing!hope you're enjoying your health as much as you possible can! melissa Quote Link to comment Share on other sites More sharing options...
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