IDreamInColor Posted October 27, 2011 Report Share Posted October 27, 2011 I'm just curious how many of you have gotten better, gotten worse, or stayed the same? Quote Link to comment Share on other sites More sharing options...
GingerA Posted October 28, 2011 Report Share Posted October 28, 2011 I have gotten better than I was six months ago. But then I did not have a diagnosis and had never heard of POTS so I was doing a lot of the wrong things. At that time I had trouble breathing, couldn't get out of bed much because I would pass out, and had EXTREME brain fog (so severe that I got lost in stores and could not find my way home or even remember how to call someone to come get me.) Now as long as I eat right and get some rest I can do things around the house and usually run errands but I am still not able to work. I was told at Mayo that I would be fine in six months but I am concerned that their definition and my definition of fine are too different things. Quote Link to comment Share on other sites More sharing options...
mwise Posted October 28, 2011 Report Share Posted October 28, 2011 I am much better than when I was first diagnosed in December 2010, but it has been slow going and up & down. Once we found the right medicaions and treatments, I began to get better, but spent the first couple of months bed, chair & couch bound. I did have a relapse in the summer when the weather was hot and had to have my medication and treatment adjusted. Since the weather is cooler, higher compression stockings, more fluids and Midodrine upped, I am doing better. I do work a full time job (desk job) and do little errands around the house and outside of the house. I take each day as it comes. Some days I feel stronger and other days I spend resting and laying down all day long. I do have God in my life along with a good support system of family, friends and colleagues that help me during both the good & down times. I know I couldn't do it without them all. My doctor told me to just take each day as it comes and that this disease, medications and treatments varies with each individual. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted October 28, 2011 Report Share Posted October 28, 2011 I agree with Ginger my Dr's definition of progress is far different then mine! 1 month ago I would say better...at this point in time I am worse again.almost bedbound again...its the gift that just keeps on giving!! I just keep trying to take baby steps and pray that eventually my body will find its way back to normal.....whatever that is Bren Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted October 28, 2011 Report Share Posted October 28, 2011 I improved SLOWLY over a period of a couple years. Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted October 28, 2011 Report Share Posted October 28, 2011 Better each month thankfully! LOTS of supplements, several to heal the neuropathy with POTS for the heart, blood vessels etc.. Quote Link to comment Share on other sites More sharing options...
potsyturvy Posted October 28, 2011 Report Share Posted October 28, 2011 Doing better. I was bedbound from January to March and have slowly gotten better since then. I'm still not back to where I was prior to this last big relapse, but I'm now up and just started doing volunteer week 1 day a week for 3 hours, that still is enough to wipe me out, but so much better than I was months ago!! Quote Link to comment Share on other sites More sharing options...
cgnursegirl Posted October 28, 2011 Report Share Posted October 28, 2011 I have had POTS for 7 years, been correctly diagnosed with it for about 1 year now. I have personally gotten way worse. I was in the hospital in August with a bowel obstruction/gastroparesis, could not eat for about a month afterwards without pain. Dehydrated and low BP and fainting. I am still fighting low BP and dehydration every day. I am now on midodrine 3x a day, it has stopped the fainting, but not much else. Also, when I was so sick, it threw my thyroid off (hypo) and I just figured that out about a week ago and have had to increase my synthroid replacement dose. I am now seeing cardiology and neurology at UNC-Chapel Hill. Never had low BP and fainting issues till this summer, I was actually high BP and called hyper-POTS, but now I am being called POTS with NMS and peripheral neuropathy (due to hand and foot nerve pain). Going to have some nerve testing done at UNC when I can see the neuro specialist that does that. I am not as symptomatic as I was in Aug, but certainly not as well as I was 6 months ago. Quote Link to comment Share on other sites More sharing options...
sandymbme Posted October 28, 2011 Report Share Posted October 28, 2011 I am physically far, far worse. But spiritually and emotionally much, much better. My physical condition is complicated to a huge degree by my other dx's. So I would not look to what is happening to me as an example of what to expect with POTS. I would definitely recommend putting together the best medical "team" (gastroenterologist, neurologist, cardiologist, etc.) that you can, and make sure you build the best support system you can. I have found that having lots of different people/resources to turn to for support is really key to keeping your health from being your whole life.Sandy Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted October 28, 2011 Report Share Posted October 28, 2011 I was going to post this question myself. Glad to see so many are doing better - I have definitely gotten worse over the years. I feel like it's progressing and am disturbed by new symptoms in my arms and legs that have started this year (many years later) - these symptoms scare me. I just wish I could understand the mechanism behind this so it would at least make sense. I think understanding what is happening would make it easier to cope. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted October 28, 2011 Report Share Posted October 28, 2011 I go through cycles where I feel really awful, and then stabilize for awhile, and then feel awful again. It seems like I keep getting diagnosed with more problems as time goes on, so I have to say that I'm slowly getting worse. I'm still hoping that I'll get well enough to at least go back to work PT...I went from being so active to a point where I get out of the house about 2, maybe 3 times a week. These excursions can only be for 2-3 hours, and then I'm beat and must go back home to rest. Keep hope alive! Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted October 28, 2011 Report Share Posted October 28, 2011 I have the daily waxing and waning, but overall I'm much worse off than I was 6 months ago or 6 years ago. My progression is definitely down hill, I'm sure it's mostly due to the different root causes all of us have. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted October 28, 2011 Report Share Posted October 28, 2011 I have gone downhill in the past six months. I'm now on 2 liters of potassium chloride iv and 1 liter of dextrose iv a day along with all the non conventional meds. My dog and I live in my bed.Thank Goodness for my computer, Family and Friends who visit ~ My wheelchair : ) Quote Link to comment Share on other sites More sharing options...
Katybug Posted October 28, 2011 Report Share Posted October 28, 2011 I am up and down. Two weeks ago I would have said worse, but, now for the last week and a half, I've been well enough to leave the house for about 2 hrs. a day. So, I am just waiting to see what each day brings.Glad to hear about the stories of people getting better. It's something to hold on to. Quote Link to comment Share on other sites More sharing options...
Chaos Posted October 29, 2011 Report Share Posted October 29, 2011 Two months ago I would have said LOTS better! Almost thought I had whipped this thing... not really but I was doing SO much better. Then about Labor day, started a downhill slide with a big crash about 2 weeks ago. Now I'm trying to crawl my way back out of this hole again. The good things is that since I've been down here before, I know that it'll get better eventually and I know a bit better how to deal with it to somewhat.I also think that I've learned a lot of ways to accommodate the condition so that I appear to be a lot more "normal" than I really am. It works for the most part. Quote Link to comment Share on other sites More sharing options...
samannran Posted October 29, 2011 Report Share Posted October 29, 2011 I am worse than I was six months ago. I have steadily gotten worse over the last several years. Quote Link to comment Share on other sites More sharing options...
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