keeponit33 Posted August 20, 2022 Report Share Posted August 20, 2022 In two days, I will have been in my current flare for exactly a month. Typically, my flares start off mild before they become much worse, but in the past they would last a week at the very most. The last one I had though was 4 months long and now this feels about the same. Does this happen often for those that get flares? I feel like lots of times I read about someone having one for a couple days or a week at most, but these marathon ones are really starting to get to me mentally. Thanks! Quote Link to comment Share on other sites More sharing options...
Pistol Posted August 21, 2022 Report Share Posted August 21, 2022 @keeponit33 for me flares differ. Some times they are brief and I can tell what triggered it, and other times I have no idea why I get worse and the flares can take months. I too used to feel completely defeated when I would flare for a long time, especially if I had enjoyed several weeks of feeling well. Eventually i learned that even long flares will go away. There are certain things, like careful exercise to tolerance that can help with flares. Quote Link to comment Share on other sites More sharing options...
Bergbrow Posted August 21, 2022 Report Share Posted August 21, 2022 I too get marathon flares that last for months. I totally felt your comment about them “getting to you mentally”. They’re debilitating, constant and seemingly unending, plus night after night of insomnia, I hate these flares too. Day after day for months and months is misery. I don’t have any advice to give for relief as what I’ve tried for relief does not always work since my triggers have not been consistent. Just hang in there and put extra focus on the moments during the day when you DO feel ok. After a while, you will make it through this cycle and hopefully the next will be better. Quote Link to comment Share on other sites More sharing options...
MikeO Posted August 21, 2022 Report Share Posted August 21, 2022 Pretty sure i can't help here. I do get seasonal flares mid may to june and later in the year November to January this has been consistent. What i can say is a flare up can last a month or wax and wane during the same time frame. All i can say is keep trying to identify your triggers. Quote Link to comment Share on other sites More sharing options...
Pistol Posted August 21, 2022 Report Share Posted August 21, 2022 10 hours ago, Bergbrow said: Just hang in there and put extra focus on the moments during the day when you DO feel ok. After a while, you will make it through this cycle and hopefully the next will be better. Well said - so true! Quote Link to comment Share on other sites More sharing options...
keeponit33 Posted August 22, 2022 Author Report Share Posted August 22, 2022 Can’t thank you guys enough for taking the time to respond to my post, truly means a lot. And so detailed, all of you. Thanks! It truly is scary to go through a flare because with mine I cannot work and it lays me out. The chest pressure is hands-down one of the worst parts about it and this is the first time I’ve tried meds after 10+ years (truly never have needed them, minus these last two flares) and it hasn’t even put a dent in it. Thanks again for helping to ease my mind through this process. Quote Link to comment Share on other sites More sharing options...
azdevo Posted August 23, 2022 Report Share Posted August 23, 2022 I apologize in advance, I'm new here. A 'flare" of what are you referring to? Quote Link to comment Share on other sites More sharing options...
Pistol Posted August 24, 2022 Report Share Posted August 24, 2022 @azdevo when we use the term "Flare" we generally mean an acute worsening of dysautonomia symptoms. Quote Link to comment Share on other sites More sharing options...
Catbrat Posted August 30, 2022 Report Share Posted August 30, 2022 @keeponit33 My episodes or flares which ever you prefer. My first full episode occurred last year after I have a disc replaced in my neck.it lasted 4 month, the next full episode was April of this year and it also lasted 4-5 months. Both times I was bed bound the whole time. Quote Link to comment Share on other sites More sharing options...
bizbiz Posted September 11, 2022 Report Share Posted September 11, 2022 I hope you are feeling a little better since you originally posted. My flares vary in length, (generally months. I've had three major flares since being diagnosed). In between, I am almost completely symptom free, and this is what I try to focus on when I'm feeling unwell. I know it's hard, (I'm currently in my third and longest flare - 2 years, - and it's hard to try to remain positive), but knowing that I've been through this and gotten better is what I try to think about. Quote Link to comment Share on other sites More sharing options...
Pistol Posted September 12, 2022 Report Share Posted September 12, 2022 @keeponit33 @bizbiz I wanted to share this for encouragement: I have had years of essentially having to be inactive from POTS. This year I have enjoyed the least flare activity since onset of illness and - for the first time - was able to travel, spend two nights in hotel ( including walking hallways and waiting by elevators, which was my greatest challenge ), attended a rehearsal dinner and wedding the next day, travelled home AND ( astounding fact ) was able to stop briefly at a mall for my teenage daughters pitstop, WITHOUT a wheel chair !!! 😲! Today - first day back - I am of course riddled with symptoms and not sure how long they will last but regardless am very proud to have been able to do all of these activities without any episodes! The morale of the story is : even the most disabling and longest flares can disappear and we CAN do things again eventually. So keep that in mind when you are at your lowest! 😄 Quote Link to comment Share on other sites More sharing options...
bizbiz Posted September 12, 2022 Report Share Posted September 12, 2022 Thank you @Pistol To experience a year of low POTS symptoms would have been a welcome respite! How lovely that you were able to travel and attend social events! While I'm not surprised you're getting a bit of push back from your body now that you're home, hopefully you will be back to baseline in only a few days considering you were doing so well beforehand! Weddings were always hard on me - even in between flares when I was feeling well - I think it was all the talking! While I've never gone back to being bed ridden like I was in the beginning of my first flare, this one seems to be lingering around the longest. I'm refusing to accept this as my new normal - I've always gone back to almost completely symptom free health - so I'm sure it will happen again. Hopefully soon 🤞🤞 Quote Link to comment Share on other sites More sharing options...
Pistol Posted September 12, 2022 Report Share Posted September 12, 2022 2 hours ago, bizbiz said: While I've never gone back to being bed ridden like I was in the beginning of my first flare, this one seems to be lingering around the longest. I'm refusing to accept this as my new normal - I've always gone back to almost completely symptom free health - so I'm sure it will happen again. Hopefully soon 🤞🤞 Yes @bizbiz - be positive! Even the longest and most cruel flares will eventually go away! Remember - a "Normal" does not seem to exist for us, so we have to take each day at a time. Cherish and enjoy the good days and keep your Hope, Grit and Endurance during the bad days! I sincerely hope you will get better soon - Hugs! Quote Link to comment Share on other sites More sharing options...
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