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Hello Everyone!

It has been quite awhile since my last post so I am just checking in! I still stand by my theory that exercise is the best therapy for my pots besides medication (mine was fludrocortisone/florinef). Over the past year i have been on around 10 flights with no problems. And am now up to walking as far as i please--earlier last week this was around 10 miles up and down the strip in vegas. Then around 4 miles the next day in San Fransisco. I remember the day when i could hardly walk 6 feet to the bathroom! It is strange, i will admit that exercise helps--as i was in perfectly fine shape when I came down with this disorder. However, it seemed that my body needed to rest for a bit before it was ready to get moving again. Unfortuantely, Pots is still a part of my life in so far as periodic fatigue(which has gotten better with exercise), and lightheadedness. But i will trade those two any day for the nasty symptoms i was experiencing. It is hard for me to jog still above 2 miles or around 20 minutes of cardio. So i try to walk as much as possible to keep my stamina up. Exercising with pots is always an uphill battle. It never feels good. But over time, as my stamina has increased, my daily symptoms and endurance have improved. Here are some other things that helped me:

1. Staying Calm- Easier said than done when your heart is beating through the roof and your adrenaline is firing off every 5 seconds. But really, staying calm and attempting to have control over my body helps. Not 100% but every little bit counts. Sometimes i think the panic caused by my pots created more symptoms. In this, i try to slow my mind down from racing. Slow down, calm down is what i tell myself.

2. Taking Deep Breaths during lightheadedness periods--this seems to resolve it within a minute or two

3. Knowing why I feel bad: Is a rainstorm coming in? Did i eat garlic? Have I had enough water today? Am i about to menstruate? Am i tired? are all questions i ask when i am not feeling well sure enough, almost always one is to blame.

4. Getting enough rest- this means to me relaxing enough to let my body actually experience deep sleep. This can feel at times like i am dying or giving up but i'm not. I'm just sleeping and in the morning, man does it feel good!

5. Trying not to pay attention to every little thing that happens in my body: ex: heart thumps--"what was that?!?! Oh my god i must be dying!"

6. Stop fighting- for me going with the flow of my body has helped tremendously. If i do not fight to stay conscious--nothing happens except that i relax. And if i feel like i am going to lose it or something i say ,"ok body, you need a break? Let's sleep" and then i take a nap.

7. Gradual exercise progression--slowly but surely--my results did not happen as quickly as i had expected

8, Drinking Milk--i do not know why but it calms me down

Anyways, I hope this helps those of you out there who are going through the rough patches. For me, there was a light at the end of the tunnel, but i had to find it on my own.

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I wanted to say also I think exercise helps greatly as well. It doesn't cure my POTs, but it makes the symptoms manageable. I say this because I wasn't diagnosed with POTs until Sept 2013 but I've had symptoms for about 8 years. However, whenever I had testing done the doctors told me everything was normal. So with that mindset. I tried to ignore my symptoms and just continued trying to live like a "normal" person. I knew my body had limitations, I knew that I couldn't workout in the morning, I haven't been able too for a long time. However, I was determined to continue working out. And I did, 3-4x/week for the last 8 years! I am able to work Full Time and pretty much live a fulfilling life. I knew there still was something not right because I would be incredibly tired all the time and need to take naps daily but I think the exercise made it so I could still function. I didn't even realize how high my heart rate was getting in the morning (130's-160's) and I think it's because I was used to high heart rates while exercising so it didn't bother me..it's all the other symptoms that are associated with it. I am on medication now after finding out that I have POTs and it is helping some. I mean I still have symptoms daily but I don't feel like I am being held back. I feel like if I want to do something, I can, it may take some adjustments but I can still do it.

Side note: I actually think exercising finally led me to getting a proper diagnosis! I was training last spring/summer for a Tough Mudder (13 mile obstacle race) and was so incredibly fatigued all the time. My training runs were getting much worse, not better! I was like regressing and couldn't understand it. Every time I'd stand in the morning my vision would dim or completely go away and I felt like I'd pass out. I was really weak a lot and my irritable bowel syndrome was worse. Plus I was having daily headaches. So I finally went back to my doctor and was like something is definitely not right. And it finally led me down a path to get the diagnosis!

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All great tips. My only comment re exercise is that absolutely going out and gaining yourself even in a setting of improved general fitness via a headed exercise regime (which is key) can cause me to crash.

once in a crash I have to start exercise from scratch for some reason.

its always great to hear positive ideas and they seem to mirror my own coping mechanisms

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  • 2 months later...

Thanks for sharing this and for earlier posts on your progress. A post you made last year was incredibly helpful to me. I was not a member of the forum then but the posts must have been public. I did Google searches for things like "I recovered from POTS" and "POTS recovery" and yours was one of the most helpful accounts. I printed it out and read it every day when I was at my worst, and it helped me to push forward. It was hard to find real stories of improvement. I've made a lot of progress. THANK YOU.

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