AussieOI Posted May 12, 2013 Report Share Posted May 12, 2013 Hi All,I wondered if anyone has any stories of how they have improved with POTS and what they did to achieve this improvement.It could be good to share these stories as it might encourage others?I know I have improved a lot (although not fully recovered) and I would be interested to know other people's stories.Aussie Quote Link to comment Share on other sites More sharing options...
Lenna Posted May 13, 2013 Report Share Posted May 13, 2013 Hi, this was the subject of a recent thread. Here is the link: http://forums.dinet.org/index.php?/topic/23187-stories-of-recovery/Lenna Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 13, 2013 Report Share Posted May 13, 2013 First time it just went away on its own with me doing nothing other than eating bacon for breakfast and I used to believe one beer a night helped as well until I was diagnoised and told that it just couldnt help LOL.then it came back a little and I exercised it away I think.For me the only thing that settles it is time. Quote Link to comment Share on other sites More sharing options...
looneymom Posted May 13, 2013 Report Share Posted May 13, 2013 If anyone has a teenager that has recovered from POTS, I would love to hear their story. It's so hard watching my son go through all this. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted May 13, 2013 Report Share Posted May 13, 2013 Rama,First time it just went away on its own with me doing nothing other than eating bacon for breakfast and I used to believe one beer a night helped as well until I was diagnoised and told that it just couldnt help LOL.then it came back a little and I exercised it away I think.For me the only thing that settles it is time.I'm changing my diet - it's bacon for breakfast from now on. Any alternative options to the beer though (that's not exactly my cup o' tea)? Any more tips? LOL Alex Quote Link to comment Share on other sites More sharing options...
Courtney812 Posted May 15, 2013 Report Share Posted May 15, 2013 Time has helped me... After my first child it was better quickly like 2-3wks symptom wise I was 100% better After my second child 11wks ago I'm still not 100% but I have improved about 75%. I was hospitalized and bedridden now I'm fully functioning. I have fatigue and headaches but I found out I have sleep apnea and got my Cpap machine today actually so that should help my fatigue and headaches hopefully. I had symptoms in pregnancy like low blood pressure. But now my blood pressure and heart rate are all over the map. But like I said I have improved a lot. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted May 15, 2013 Report Share Posted May 15, 2013 First time it just went away on its own with me doing nothing other than eating bacon for breakfast and I used to believe one beer a night helped as well until I was diagnoised and told that it just couldnt help LOL.Dont laugh so fast. I swear bacon for breakfast and wine for bed helped me more than anything for quite a long time! Infact the only thing i could eat before about 2pm for months without landing flat on my back again was bacon. Now that im whamied again, thank you for the reminder! Bacon and wine coming up! Quote Link to comment Share on other sites More sharing options...
Lenna Posted May 15, 2013 Report Share Posted May 15, 2013 If anyone has a teenager that has recovered from POTS, I would love to hear their story. It's so hard watching my son go through all this.My son developed POTS more than 5 years ago, when he was 15. He missed so much school that he wasn't able to complete his high school requirements to graduate. His life had come to a stop. It felt very hopeless and devastating. Then, when he was 18, he participated in a study at Beth Israel Deaconess Hospital. What he learned through that study is that he is deficient in nitric oxide and therefore is vasoconstricted. So at that point he began to avoid vasoconstricting medications like Midodrine and Adderall, and starting taking Cozaar (Losartan), a vasodilator, to increase his blood flow. Although he still has POTS, he is very much improved. He took the SATs, got his GED, applied to college, and just finished his freshman year at an excellent college with excellent grades. He even lived in a dorm. I wish we knew why he is deficient in NO, but maybe we'll find out someday and be able to treat the root of the problem. I guess if I could make one suggestion, it would be to participate in any studies that you qualify for; find out as much info as you can about your particular situation. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted May 15, 2013 Report Share Posted May 15, 2013 Herbs, acupuncture, and eliminating gmo anything and gluten have helped me the most. Quote Link to comment Share on other sites More sharing options...
Aimes Posted May 15, 2013 Report Share Posted May 15, 2013 Yum! Beer and bacon! This is quickly becoming one of my favorite conversations! Ha! I sooo wish beer and bacon could be my cure! I agree that it mostly takes time. My teenage years were such a struggle, then I hit my 20s and nearly forgot I had POTS (until this flare after gallbladder surgery). Overall, I feel like I was much worse during my teens. It was like one, big flare that wouldn't end. Somehow I kind of came out of it. This flare is worse than anything I dealt with as a teen but my body also went through a lot this year! I had a baby in September and then surgery in December, so it's not surprising that things would act up so much. I have high hopes that it will all calm down again with time! It also helps me to eat small, frequent meals and try to stay somewhat active. It seems to go downhill fast if I slip into the bedridden zone! Quote Link to comment Share on other sites More sharing options...
NMPotsie Posted May 15, 2013 Report Share Posted May 15, 2013 I have improved a lot with the addition of beta blockers to control the horrible hyper surges that left me miserable for days; it took awhile to find the right one and balance the salt/fluids/etc. but I've gotten to a good place.Controlling my very sticky immune system has also helped a lot. Mostly I've eliminated all dairy, most meat (including fish, which triggers my issues), and artificial anything. My diet is boring but I've lost weight, have more energy, and am not in the ER once a month for random infections and fevers that worsen my POTS. Exercise has made my daily life a lot better, specifically the dizziness, which was my worst symptom. I can stand longer (with the help of a binder).Mentally, two things have helped me the most:1) I don't fuss over my symptoms anymore. I check my bp once a week unless I think I'm having a surge. Otherwise, I ignore my randomly unevenly dilated pupils, the suddenly jerking leg, or the shivering when it's 90 degrees. I just say "well, I have pots" and move on. Unless i have a fever or it doesn't go away in a day or so, I just ignore it. Anxiety was making it much worse.2) I allow myself to be a potsie. If I'm forgetful or just too tired to do something, I don't. I'm sick. Period. I'm not gonna feel bad about it, and I don't let anyone else make me feel bad. If they try, I bombard them with pots info until they shut up (links, blogs, you name it). No one messes with me anymore. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 15, 2013 Report Share Posted May 15, 2013 haha - yeah a healthy dietary choice - could have been just what i was doing when it randomly improved - but its funny how you cling to the belief that what you were doing at the time was the reason... Quote Link to comment Share on other sites More sharing options...
bizbiz Posted May 16, 2013 Report Share Posted May 16, 2013 I got completely better after my major POTS flare 5 years ago, and I am about 80% back to normal after this last relapse. I really have no idea why I relapsed, and no idea why I get better. I wish I knew so that I can prevent it from happening again and help myself get better when it does, but I'm starting to think it's all out of my control. I had two years pretty much symptom free between crashes.I have the feeling I will wax and wane in this manner for the rest of my life. Quote Link to comment Share on other sites More sharing options...
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