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Just An Update. Still No Pots.


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I just wanted to pop in and give a quick update. I apologize that I don't frequent the boards anymore. I am still traumatized by my experience with POTS. I find it difficult to read posts that hit so close to home.

I have fully recovered from POTS. I even was sick with the flu this summer and was in bed for a week. I'll be getting my flu shot for now on! No relapses post flu. I guess I have been "POTS free" for slightly less than a year. 11 months? I went to Disney World in May. I am back to my regular life and feel healthier and stronger than ever. I can even stand (yes STAND, not sit leaning back in a chair) on the sidelines and watch the kids play soccer.

I still exercise daily, as I did prior to getting POTS.

I feel extremely lucky that I have recovered from POTS. I probably had the "POTS flavor" that people may recover from over time. I have no clue what caused my POTS.

I noticed a few messages where people asked me what I did to recover. It's obviously hard to exercise when you can't even sit up in bed. The volume expansion (Florinef and DDAVP) prescribed by a compassionate endocrinologist helped me get back on my feet. I started gradually exercising and then I turned into an exercise demon. I was really ticked off that I still had POTS when I got up to jogging 8 miles and day and then jumping on the stair master for an hour. At that point, I saw Dr. Levine who confirmed my blood volume was "high", as is normal with athletes. I was able to get off of the Florinef and DDAVP, and then the POTS disappeared.

I have no idea if the overly aggressive exercise regimen has any benefit over a more reasonable regimen??? I would venture to say most doctors would advise against this route? The other thing I did differently was that I FORCED myself up. I was in tears and pain everyday for a good year. I would not allow myself to lye in bed unless I was sleeping. I had a recliner and then pushed myself to sit in a regular high back chair. I forced myself to do housework and garden, etc... I started accompanying my family everywhere, even if I felt bad. I would say that I took a very aggressive approach to recovery, not necessarily a gentle approach. It's almost as if I had to retrain my body to be upright again (if that makes any sense).

Someone asked if I experienced post-exertional fatigue. YES! especially in the beginning, but it seemed to get better over time

Someone asked me if I did tilt training. No. I tried and found it didn't seem to help.

Once I accepted that I hd a chronic condition I started to improve. Perhaps the old saying is true. What we resist persists.

Best wishes to all. I just wanted to give a little hope. It is possible to improve and even recover.

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Thank you for the inspiration!!!!!! I agree with your approach 100% on my bad days I feel great if I lay down but 10 times worse when I go to get back up. That is why I don't allow myself to do it and I suffer through the house work and feel horrible but I'm always glad I did. I don't agree with the idea of deconditioning as a cause for pots but I agree with exercise as a cure. That is wonderful! :)

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Wow I'm so glad to hear of your progress.

What hope and inspiration you give to the rest of us!

I need pharmacy help.

What would be he best way to find out what drugs are sulfite free?

What would you do?

Should I try to set up a consult at the hospital where I'll be having my procedure?

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I am so happy for you. You are one tough cookie. I've run low BP (low normal) all my life so I don't know if I can get a fix on orthostatic hypotension (taking Midodrine and pushing fluids). Dr. is supposed to be adding something to get me hypertensive but I'm patiently waiting as since it is colder weather it hasn't been as much of a problem as when I venture outdoors to get some of that sunshine. I really, really miss my bike. The recumbent stationary bike is good to have but it is nothing like feeling the wind and sun. I have read that some research has shown IV Ig to improve dysautonomia (although I think it is considered 'experimental' by insurance payors). I am taking that now for PIDD/CViD. And I'm taking isosorb to boost calories/nutrition. You're truly an inspiration. Thank you for sharing and giving us hope.

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Great I am very glad for you and your own experiences parallel my own. I too could not return to these forums once improved because I actually found it emotionally traumatic. I wanted to deny the experience away because it was harder than any non potsies could imagine.

However, unlike you I never got back to completely normal. I told myself i was at the time but there were still minor residual symptoms (im talking say 5-10%).

Unfortunately for me my POTs tends to return after high stress so my best bit of advice would be to try and avoid stress and remember that despite the fact you feel fine now and think you can push yourself say at work or whatever, just take a step back occasionally to smell the roses. This is what I always fail to do and wham im back to square one again LOL.

Although this time at least ive got saline! :)

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That's great to hear! I'm a little bit afraid of exercising as I notice my HR gets to be about 200+ when I'm jogging. (Not sure if that's safe.)

I think many people on this forum would be willing to put up with the pain if they knew it was going to help them. I did do a jogging regiment of 5 weeks duration and unfortunately I didn't feel much better, but perhaps it takes much longer than that I'm not sure.

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Yay, Texas!!! I was just thinking about you today as I was in the midst of my run- 6 miles today! :D I have always pushed myself too. Giving in and lying around always makes me feel worse- but there HAVE been times when my symptoms were so bad that I was forced to be bed bound. Unlike you, I still have POTS, but my symptoms are much improved with regular exercise.

I just started a new program. I am in the 4th week- it's called 100 push-ups. The goal is to get to 100 consecutive push-ups by the end of 6 weeks. It's really hard, but a GREAT way to work out my upper body. (I KNOW I'll never make it :wacko:) I'm also doing their 200 squat program- that's much easier & I swear it's improving my venous return in my calves. Google "100 push-ups" to check it out.

You are one tough cookie and an inspiration. Thanks for letting us know how well you are doing. i know you give many of us hope. I'll remember you when i want to skip my work-out :rolleyes:

Stay well!

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That is wonderful :) Always good to get a ray of hope and sunshine!! B) I've always exercised my whole life until I had severe vertigo and dizziness, but now with treatment, I also go to the YMCA twice a week on the Elliptical for about 3 miles and walk my dog every day. It does help immensely. Sometimes I really have to push myself to go, but it is worth it. I know my limits and I listen to my body, and I rest when I need to :D

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  • 3 weeks later...

TXPOTS and Ramakentesh: Thanks to both of you for uplifting stories of recovery.

I have my own recovery story to tell: a long time ago I was hit with brain fog and need to lie down and pressure in head. This was many months after wisdom tooth removal. But the problem disappeared by itself after a couple of years.

This time around the very same problem has lasted four years. It rolled in slowly about a year after I had deviated septum surgery with bone cut out from inside my nose.

I do try to exercise often now, but first I load up on fruit smoothies or V8 or such, at least 20 ounces. I found flourinef to not do much, but the juice loading always works for an hour or so.

TXPOTS and Ramakentesh: good luck, hope you wont find reason to write here again.

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  • 9 months later...

I was on another forum and Mack's Mom was on there for awhile. I heard she has stopped the forums all together. I guess she is doing much better from what I heard. She seriously addressed Mast cell issues and went back to running. Last I heard ---she was good. Mack's Mom ---if you still get your messages --let us hear from you too.

I had a PM from Julie about a month ago ---she seems to be about the same. Just not on the forums much.

I e-mailed TXPOTS about 6 months ago and she was still great.

Haven't heard from Rama - other then one little message a few months ago and it basically let me know he was still alive and kicking. Not sure how he is. But, I know in the past - if he got better - he didn't like going on the forums --cause it bothered him to see that so many are not better. (Ha! I guess he said this above.) I'm sure he is still reading the latest ----but, really, there hasn't been that much NEW in awhile. I'm betting he will pop back on and tell us if there is some new thing - we haven't picked up on.

I hope all the ones we haven't heard from are doing great and HAVING a life. Once things improve they have better things to do then to sit around looking for answers for others ----cause they got their answer. I hope one day -----all of us reach that point. If I totally disappear ---you guys are not forgotten ----but, maybe ---I've found my answer. ONE CAN DREAM!!!!!!


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