gertie Posted June 16, 2013 Report Share Posted June 16, 2013 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. Quote Link to comment Share on other sites More sharing options...
badhbt Posted June 16, 2013 Report Share Posted June 16, 2013 I did have ten years without a flare....that is what gives me hope! Quote Link to comment Share on other sites More sharing options...
Relax86 Posted June 17, 2013 Report Share Posted June 17, 2013 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 Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted June 17, 2013 Report Share Posted June 17, 2013 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. Quote Link to comment Share on other sites More sharing options...
lieze Posted June 17, 2013 Report Share Posted June 17, 2013 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. Quote Link to comment Share on other sites More sharing options...
gertie Posted June 17, 2013 Author Report Share Posted June 17, 2013 Thanks everyone. lieze, I know what you mean about not having any stamina. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted June 17, 2013 Report Share Posted June 17, 2013 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 Quote Link to comment Share on other sites More sharing options...
futurehope Posted June 18, 2013 Report Share Posted June 18, 2013 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. Quote Link to comment Share on other sites More sharing options...
margiebee Posted June 18, 2013 Report Share Posted June 18, 2013 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. Quote Link to comment Share on other sites More sharing options...
Birdlady Posted June 19, 2013 Report Share Posted June 19, 2013 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. Quote Link to comment Share on other sites More sharing options...
davecom Posted June 19, 2013 Report Share Posted June 19, 2013 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... Quote Link to comment Share on other sites More sharing options...
Alan-pots-IST Posted June 21, 2013 Report Share Posted June 21, 2013 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. Quote Link to comment Share on other sites More sharing options...
Agreeky Posted June 21, 2013 Report Share Posted June 21, 2013 Alan where did you hear that this might help you?? I would be willing to try it. Quote Link to comment Share on other sites More sharing options...
Alan-pots-IST Posted June 21, 2013 Report Share Posted June 21, 2013 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. Quote Link to comment Share on other sites More sharing options...
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