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gertie

Anyone Ever Completely Free From Pots

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Just when I think I will never have another bout of passing out it happens again. I can't take medication because my BP goes from high to low. If I take meds it will fall too low. Anyone ever win over this demon? thanks.

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I've also had years between flares. 2004, 2009, 2012 and a little step back about a month ago but inbetween those flares I got 100% well; except the 2012 flare I'm still recovering. But working and functional...not always comfortable but I'm hangin in. It can happen. Hope. Believe. Good luck ~ Tracy

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I have never been entirely symptom free, but my symptoms are generally very mild after a bad year w POTS 10 yrs ago. I do get flare ups that can last several days once in a while.

I also had wide variability in bp. A low dose SSRI worked well for me.

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I can think I'm okay but then very quickly realize I am not.

I just am so limited in what I can do each day that is my big challenge.

And I still have the extensive allergies and very low weight to deal with.

I will feel almost norm and think okay like the other day I did my shopping which takes me only 10-15 minutes on the disability scooter.

I had paid and it hit me I forgot to buy tomato soup. My son had asked for it for lunch.

So I got up off the scooter and thought I can grab this one thing.

Well I didn't get very far and I was huffing and puffing from a somewhat normal feeling prior.

I just don't have any stamina.

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No but with having POTS/Dysautonomia, MCAS and EDS I never know which symptoms are being caused by which illness ;) .....even though I am medicated it only controls so much. The unrelenting exhaustion/weariness, is my worst symptom.....I feel like I am just treading water all the time :(

Bren

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Brethor9,

I can relate to your symptoms. It's been such a long time since I've felt normal, that I try not to think about it. I am in my new normal. Welcome to the rest of my life.

Honestly speaking, I don't think any of us can say with certainty what the futures hold. Each of us is unique and each of us has their unique manifestation of disability. I am sure some people get better, just as I'm sure that some people do not. Until the medical community has more knowledge on the subject of dysautonomia, it is a guessing game.

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I always think I'm getting better but lately new symptoms keep popping up, which is upsetting to me. I try to just keep plugging on regardless of it. I don't like the fact that there is so little information from the medical community as far as what to expect from this illness, as someone who constantly worried about the future that's not a great thing for me.

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The only person I know who was totally healed got prayer. She was also healed of several other conditions at the same time too. It is that person's testimony that started me on my own journey for healing.

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I think it's been said before - the people who have completely healed are unlikely to be on this forum. They have likely moved on with their lives. Over my past few months on this forum, I have seen the occasional person check in to say they're much better... I also wonder about some of the people who were doing the worst and then stopped posting though...

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im not 100% yet, but i started to see improvements when i added r-lipoic acid then going 100% gluten free

i started to improve much more. but for the last 4 going on 5 days of cabbage juicing my standing heart rate is in the 60s 70s.

when this started it was in the 150s 180s very high .

Cabbage juiceing for me looks like its the key to walking away from pots.

when this started i had muscle twitching in my left calf and im lookng at it now and it aouut 90% gone after the cabbage juiceing.

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well i read on pubmed that cabbage juice helps with the gut and can cure ulcers in 10 days, and it was saying it my be a type of autoimmune regulator.

When ever i eat things like gluten abd such my pots gets realy bad, so i started to think something in my gut is doing it.

to a shot i started juiceing the cabbage, the green cabbage its white in the inside and its working big time for me.

i feel like i did befoe i got sick , its got to be the cabbage, its realy hard to drink but im going to be doing it for ever now.

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