hippychic258 Posted July 12, 2012 Report Share Posted July 12, 2012 Seeing how I am stuck in this flare up for 5 months now and I am completely bedridden, I am curious as to how many flare ups everyone has had and which one has been the worst for you and what all did you go through and for how long? Does this mean each flare up is going to get worse?For me this is my second bad flare up and this one is so much worse than the first one, I never had all the weird neurological symptoms with my first flare up like I have with this one. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 18, 2012 Report Share Posted July 18, 2012 ive had 4 since 2003. Quote Link to comment Share on other sites More sharing options...
Relax86 Posted July 19, 2012 Report Share Posted July 19, 2012 3 since 2004. this one has been the worst. hopefully with the next I'll be much better informed. i wasn't ready for this flare at all. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted July 19, 2012 Report Share Posted July 19, 2012 I have major flares every couple weeks and end up bedridden for a few days.....although I am never without symptoms on any given day.......just some days are better than others...... Quote Link to comment Share on other sites More sharing options...
Sif Posted July 19, 2012 Report Share Posted July 19, 2012 Feel like I've been in one big flare up since this all started about a year ago. Still waiting for it to go away. Quote Link to comment Share on other sites More sharing options...
potsdo Posted July 19, 2012 Report Share Posted July 19, 2012 Two major relapses (in the middle of one right now) after being diagnosed with POTS. First one lasted 8 months. This one is 6 months so far. Had a few flares since 2003 (prior to diagnosis) which, in retrospect, were due to POTS. Quote Link to comment Share on other sites More sharing options...
hippychic258 Posted July 20, 2012 Author Report Share Posted July 20, 2012 Is anyone bedridden with there flare ups? Quote Link to comment Share on other sites More sharing options...
lissy Posted July 20, 2012 Report Share Posted July 20, 2012 Someone fill me in as to what your speaking of" flare ups"? Are you meaning alot of symptoms all day everyday for extended amounts of time like weeks/months/years? And then the symptoms improve but don't go away and that lasts weeks/months/years?If thats the definition then I would say one major long period lasting years(3), the second lasting months(8), and currently I'm going on (3) months.1st time---Had to hold on to walls, sit in chairs to do dishes or cook, couldn't walk through stores had to have a scooter, major Shortness of breath!2nd time--(before surgery)Not as bad as the 1st had alot of mixed symptoms daily very drained felt like I was fighting against something I couldn't defeat3rd --(currently)---After surgery felt wonderful for about a month and started declining, more headaches, chest pains, dizziness, upper back pains, incredible fatigue, cannot tolerate humidity as it was with the 1st .The worse was probably when it first began and I didn't know what was going on. Years into this I guess I have gotten use to it but sometimes it seems unbelievable to feel so bad for so long. I try to compare my NOW and THEN to see if I have had any improvements to make myself feel encouraged:)I have never been bed ridden so I can't imagine how that is but I hope you get better soon, and that these Doctors figure more out so we can stop this crazy cycle of misery;) Quote Link to comment Share on other sites More sharing options...
brethor9 Posted July 20, 2012 Report Share Posted July 20, 2012 Hippychic....last year before diagnosis I was completely bedridden for months....couldnt even stand....used to lie on the floor and cry the head pressure was the worst....after I started florinef I was able to get stable enough to start moving around a bit but my cycle still works like if I have a very good day i end up in bed for the next 3 days after. So yes I do go through cycles every couple of weeks where I am bedridden for a few days and then it starts all over again..... Quote Link to comment Share on other sites More sharing options...
TCP Posted May 11, 2013 Report Share Posted May 11, 2013 Just experiencing one of the worst relapses I have ever had. The whole of my nervous system is jangling. My gut and back are the most painful and my joints. I also have extreme nausea, dizziness, weakness, prickling, burning all over. Very shaky and feel awful. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 11, 2013 Report Share Posted May 11, 2013 My relapses can last up to 14 months unmedicated but are much easier to manage with medication. Quote Link to comment Share on other sites More sharing options...
Joann Posted May 11, 2013 Report Share Posted May 11, 2013 The last 18 months I have had many flares, some aren't as long or as bad as others. The longer the stay the worse they get. I was bedridden (but I still managed to get to bathroom, but it was difficult) several times, the other times I am more home bound. Able to do some small things bed to couch to bathroom to kitchen.I am currently in a one of my longest flares in a long time 3 weeks and going. I went for testing and crashed that very night. Testing so far has given me no answers Once I am unable to eat it is a downward spiral and that is starting on this flare. I have two more tests and am hoping something shows.Do you have a doctor that understands this? Have they given you any suggestions? Quote Link to comment Share on other sites More sharing options...
Courtney812 Posted May 11, 2013 Report Share Posted May 11, 2013 I suspect my first flare was after my first child lasted 2-3wks and wasn't that bad.This time after my second child it's been 10wks and I'm still not 100% but this time a moderate aortic leak was found.But I was bedridden for about 2wks, now I'm nearly fully functional but have daily chest pain,headaches, and other issues. Quote Link to comment Share on other sites More sharing options...
looneymom Posted May 11, 2013 Report Share Posted May 11, 2013 So sorry you are bedridden. Since my son was diagnosed with POTS officially in December of 2011. He has had 3 major flares. The first kept him bedridden for 4 and 1/2 months. He could not sit up without support, stand, or walk. This last flare came in January with the flu. After he got over the flu, I took him to physical and occupational therapy twice a week. However, he is not able to stand up and walk due to tremors and shaking. He is still able to sit up and do exercises with legs, arms, and hands but he is very weak in the shoulder and chest area. I think if my son would have totally stopped doing exercises when he was sick with the flu, he would have been in worse shape. Doing what exercises you can do is better than doing nothing. I would encourage you to do any exercises in bed to help keep muscles strong. And I know this is truly easier said than done especially when you are hurting. My heart goes out to you and I hope this flare ends soon for you. At this time, I would definitely say the first flare was the worst. Quote Link to comment Share on other sites More sharing options...
AussieOI Posted May 11, 2013 Report Share Posted May 11, 2013 In between each flare up do people still have some symptoms or are you 100% functional like you dont have POTS? Quote Link to comment Share on other sites More sharing options...
looneymom Posted May 11, 2013 Report Share Posted May 11, 2013 The 3 month period of when my son was able to sit up and walk short distances, he still had symptoms of POTS. The longest he was able to stand and walk around was about 10 minutes before his legs would begin to give out. He would turn pale and start trembling. If I took him out for a shopping trip, the wheel chair had to be with us. When he went out in the morning hours for sunlight, he might be able to stay out 30 minutes if the morning temperature was not over 75. Fatigue was not as severe and he was able to get a good nights sleep. Hope to get back to this level of functioning soon but our cardiologist has told us it could be a long haul since the teenage years are ahead.I was hoping this flare would be shorter for my son but I'm beginning to think this is dependent upon being able to stay well, medications, hormones, and age. Quote Link to comment Share on other sites More sharing options...
badhbt Posted May 11, 2013 Report Share Posted May 11, 2013 AussieOI,For me I am 100% symptom free between flares. I am going on 8 months with this one, my last one was 2 months 10 years ago. Quote Link to comment Share on other sites More sharing options...
AussieOI Posted May 12, 2013 Report Share Posted May 12, 2013 Yes Badhbt - you case is quite interesting the way you didn't have POTS for 10 years then it came back. What prompted it to return? Quote Link to comment Share on other sites More sharing options...
looneymom Posted May 12, 2013 Report Share Posted May 12, 2013 Badhbt,Did your POTS come on during teenage years? Quote Link to comment Share on other sites More sharing options...
Relax86 Posted May 12, 2013 Report Share Posted May 12, 2013 Between 2009 and 2012 I became symptom free. So far I feel 90-95% better but usually have some symptoms for some part of every day. Can be very mild to moderate but I'm not at a point where I can't do things or avoid much ~ I can push thru symptoms. I am very grateful for symptom free days and also for the fact that I'm 90% better...I still hope for full recovery. Quote Link to comment Share on other sites More sharing options...
AussieOI Posted May 12, 2013 Report Share Posted May 12, 2013 What made you better Relax? I think I might have asked you this before and you did reply - did you say it was time? Quote Link to comment Share on other sites More sharing options...
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