Bigskyfam Posted October 24, 2016 Report Share Posted October 24, 2016 So here we are.. 3 years deep into dysautonomia... Found some eds overlap, some mast cell overlap and vitamin deficiencies, anemia and volume correction. The original thought by my original pcp was that a viral illness started the pots flare, given the fact that I had GI issues. They said I'd recover after a few years, well here we are are 3 years later... October ...historically my worst month... Weather? Gravitational pull? Who knows? I just got over a really bad GI virus that swept thru my home and family. I'm feeling horrible. This leads me to my question... Does our time start over? If we contract the flu, have a surgery or add new diagnosis ,should we expect to have dysautonomia longer with "recovery" pushed further out. I'm contemplating an EP study, so this is heavy on my mind. They believe there may be atrial flutter. I'm a concrete kind of gal... If you see it, let's see if we can fix it... But if it's only sinus tachy. Shouldn't we leave well enough alone since dysautonomia is still being researched. anyway, I hope you are doing ok into the season change and as always I enjoy reading your comments, posts and dialogue on this crazy little thing called POTS. all the best. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted October 24, 2016 Report Share Posted October 24, 2016 So sorry you are not feeling well. I don't know if there is an answer to your question unfortunately. We are all slightly different it seems. It seems many people do recover fairly well, but recovery time can take years. And yes there are things that seem to trigger relapses like flu. October can be a bad month for me--I tend to have the most insomnia in Oct and that triggers other symptoms. I think for me it is the changes in light that seem to happen fairly suddenly? Quote Link to comment Share on other sites More sharing options...
dancer65 Posted October 30, 2016 Report Share Posted October 30, 2016 Hi sorry you are feeling unwell . I hope you can get some answers to your problems. My usual experience is that it takes me months to recover from viruses and I just seem to catch everything going around ! At the beginning of the month I was having pots attacks daily felt like I was crashing even the midodrine was not helping the BP drppoing out and then spots appeared ughh I had contracted chicken pox again! Very grateful it wasn't shingles! Very strangely I recovered quicker than usual to what is my new normal and in fact if anything I feel marginally better than I did before chicken pox .the most noticeable improvement is the brain fog I don't seem to be struggling for words half as much and just small improvement in symptons all around My syncope nurse who has been so supportive has warned me this may not continue and maybe a reaction to being ill however I remain hopeful and cautiously positive and enjoying the more functional brain for the time being and hopefully in the future. seems to me there is no way to know how our bodies will react but it nice to know occasionally it can be a positive one ! Best wishes to you Quote Link to comment Share on other sites More sharing options...
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