Newoldpotsie

Thanks for your quick reply! I'm not familiar with Baltimore at all but that's what GPS is for! I live in New Castle County, DE so probably only about 2 hours away. This gives me much hope; my eye dr's daughter happens to have POTS and he referred me to a Dr Rowe at Hopkins but when I contacted that office, I found he was a pediatric dr plus he's not taking any new patients of any age-I was very disheartened. I will Google Dr Khurana and contact him on Monday. Next step is trying to get a referral to an out of state doctor-its new insurance and I'm not sure how it works but I don't think I'm supposed to cross state lines. Fingers crossed! Thanks again!

Katybug, You mentioned Union Hospital in your post above-I pray that you are referring to Union in Elkton? What a blessing it would be to have a specialist literally 30 minutes from me!! There's no one remotely close I thought! I've been at a dead end for almost a year with the doctors I'm seeing. This would be some good news in 2 days of bad news-denied disability and changes in my echo. Not to mention earlier in the week being told my thyroid is all over the place and I'm pre-diabetic!! Ugh!

I needed to read this today. Came on here because I'm having a terrible flare-I feel as bad as I did when I was diagnosed 5 months ago. It's so frustrating because I'm doing everything I'm told to do and it's worsening instead of improving as we all hope for. Not on any meds specifically for POTS because I have cardiomyopathy as well and Midodrine is apparently contraindicated. I drink 70+ oz daily and have increased my salt intake-probably not to the extent I should but I'm trying-have never been a salt person. I'm just getting ready to finish 12 weeks of cardiac rehab without much progress unfortunately-had hoped to be able to upright exercise but that's definitely not in the cards especially after the last few days I've had. I'm also doing alternative medicine involving osteopathic manipulation which is costing a fortune because it's not covered and I feel good when I walk out of the office but it lasts shorter and shorter periods now. I haven't made any dietary changes as I see on this board other than multiple small meals a day rather than large meals; and I'm not drinking as much Gatorade as I had in the past because it doesn't always settle well. I don't know if these flares are linked to the relatively high dose of my beta blocker for the cardiomyopathy because I've read that with POTS and beta blockers less is more. Dr wants to add lisinopril also since studies have shown that the use of an ACE inhibitor with a beta blocker has the best outcome for cardiomyopathy but I'm very concerned as to how it will further reduce my blood pressure. I know I'm relatively newly diagnosed and maybe my expectations are too high this soon but it's especially hard when I have some good afternoons and evenings and then I crash like this. Chills, nausea, urinary frequency, increased upright heart rate above my usual 30-35, blurred vision, chest pain, muscular upper back pain, insomnia, loss of appetite, weight loss after I was just getting some of my weight back on! I'm just so frustrated - sorry to vent. Very happy to read of improvements-I hope that for each and everyone of us suffering. I'm in my 50s and I know recovery might not happen for me like it can in much younger patients but just getting to a better baseline would be wonderful. Thanks for reading and I know everyone understands my frustration.

I'm in the same boat again with this new flare, I have to wear a pad due to the dribble - sorry, like poster said if it's tmi. It seems like the minute you realize you have to go and your brain is concentrating on it, it's run time and hope for the best!

Just diagnosed with POTS/dysautonomia/orthoststic intolerance and venous pooling in late June. Had a follow up echo about 2 weeks ago which surprisingly came back with reduced ejection fraction. Dr is changing my beta blocker and talking CATH if no EF improvement is seen. This is difficult news because treatment for cardiomyopathy is opposite of that for POTS-less sodium and eventually if heart failure sets in, less fluids as well. Right now both my cardiologist and EP are suggesting to stay on the POTS regimen since I have no edema, overload, or symptoms of heart failure. I'm having a hard time continuing with the amount of fluids and salt since I feel like I'm hurting my heart muscle!! I'm in the middle of yet another POTS flare-well I guess that's what it is-hoping it's not the cardiomyopathy - probably brought on by not following the regimen and the stress of this new finding. Palpitations, shortness of breath, chest pain, insomnia, living in the bathroom, etc. Has anyone had both POTS and cardiomyopathy or heart failure?

Yola, Thanks for your story...gives me hope. Couple questions--you mentioned IV fluids-were they at home or at a hospital ER or as an outpatient at the hospital? I've had to go to the ER a couple times and it's such a hassle. Don't really want to do home infusion either though. I've read that some patients get a standing order at a hospital outpatient department or a walk in clinic and can just get IVs as needed. Also, you mentioned weight loss--I've had severe weight loss due to loss of appetite and nausea; just wondering if you've been able to gain or maintain since your symptoms have eased. It's so frustrating to not be able to maintain at the low weight I am now. I still have very little appetite and nausea especially with flares. I'm so tired of looking sick since I'm so skinny and my clothes not fitting!! Contemplating gluten free as I've had IBS, GERD, and other GI issues all my life but have tested negative multiple times for Celiac but I know you can have a sensitivity to gluten without Celiac but I don't know if I can do such a restrictive diet especially when I'm trying to gain weight. It's all so frustrating!! Thanks for any info you can provide. Best wishes for continued recovery!!

My doctor said it's actually a good sign to see movement like you have. My resting is anywhere from low to mid 50s to mid 60s and elevates to mid 70s if it's almost time for my beta blocker.

Still having issues with loss of appetite and continued weight loss which I know is not good when trying to recover. I'm pretty much eating anything that might sound good at the moment including carbs of all kinds and fast food-not cooking much these days so it's Wawa hoagies or soup; Chinese takeout; fast food, or frozen entrees. I did steam up some cauliflower and asparagus last weekend and ate that all week so that's about all the "good" food I've had recently. Even eating this "bad" food, I'm full or nauseous pretty quickly or even BEFORE I eat so I'm not eating a lot of junk either. It's very frustrating knowing I need calories and I need to eat and I need to gain weight, lost another 1.5# this week after a bit of what I think was a GI bug but who knows what it was. GI doctor just says to eat small meals and graze throughout the day and drink a supplement like ensure or boost. I figure any calories at this point are better than nothing, but am I doing maybe more harm than good eating the sugars and flours? I'm avoiding garlic if at all possible since I've read that lowers bp which is also an issue the last few days because I don't seem to be retaining the fluid I'm drinking despite my increased salt intake. Any suggestions would be greatly appreciated, I'm very concerned about my low weight. Thanx.

So glad I came across this topic, I was just about to start a new one. This forum is great for info but it can also be a bit disheartening reading about unresolved symptoms and progressive illness of the posters. I know that posters on this forum are probably in the 25% that do not resolve or are newbies like myself and I know that potsies that have gotten better no longer usually hang around on forums but it's good to read that there are success stories. It's good for newbies to hear about actual cases and not just anecdotal resolutions from my doctor. If anyone that has posted is still around, thanks for staying and giving us all some hope and a quick question, what are your ages? Not sure that I want that question answered though since I know the younger you are, the better your odds of resolution of symptoms and I am definitely out of the usual age range for even being diagnosed. Wishing everyone well.

Not taking salt tablets, I'm sure they would wreak havoc on my GI tract as pretty much everything does; trying to increase oral salt intake. Don't quite know how much to take in because it's in grams and other measurements I don't quite understand-need straight English-eat an extra teaspoon or tablespoon, etc daily so at this point, I just salt everything I eat but I've never been a salt person so I find it's not palatable if I over salt. I find the ground chicken bullion is palatable of course in hot water as a beverage but I also just put some in my mouth and chase it with my plain water-it's easy in a pinch and since I can get it at the dollar store, I have a few containers dispersed throughout the house and in the car. Any other suggestions would be appreciated. I do try to get in 16-32 ounces of Gatorade or power aide in daily; it's usually at the lower end because I just get so full from all the water I just don't want any liquids. Not on florinef-dr did order Midodrine and I've had it for over a month but was hesitant to start it due to a question of me being over medicated for my hypothyroidism and I'm having hyperthyroid symptoms and my T4 is elevated indicating hyper rather than hypo but at the same time, my TSH is elevated so she can't quite figure out what to do with me. I did convince her to reduce the synthroid dose due to my 30# weight loss on that criteria alone but that wasn't easy either. Midodrine is contraindicated in hyperthyroidism. Due for retesting in the next couple days so, hopefully, the T4 will be in normal range and I will be able to start it. Just saw GI earlier this week and we decided to discontinue the nexium because I've been on PPIs for years for severe GERD without great success, just some mild relief; I've been weaning gradually which could have also been contributing to my increased nausea so he has changed me to Zantac and reinterated small meals or grazing throughout the day and a nutritional supplement like ensure to help with getting some weight back on and keeping up nutrients. Hope you are doing well.

Thanx for all of the welcoming good wishes and information. It is overwhelming at times but all we can do is keep pushing ourselves and our doctors- I've think I've p$ssed off a couple of my docs with my calls - one actually said I was "disturbing" the practice with my calls and questions but when you can't get in to see her for 3 months, yes I'm going to be calling for information on lab results I don't understand; ugh, anyway, I will keep trying to find doctors that are even interested in POTS/dysautonomia in my area but it's not going to be an easy task for sure.

Having a flare after a few decent days - well not really days, mostly good afternoons and early evenings. Good days, hours are so nice, I at times forgot I was even ill. Was looking into getting enrolled in the local cardiac rehab to get my recumbent exercises started and now I can't see that happening any time soon. Also, 3 nights of insomnia leading up to this didn't help nor did the 3 trips up and down the stairs yesterday which I try to limit to once daily. Anyway, something is causing a nasty flare which really started Thursday morning and is just really bad today. There are many annoying symptoms with the flares as you all know but the nausea is the worst because in most cases like today, I'm unable to eat anything which causes even more weight loss and I'm already now under 110#; had just gotten a bit of an appetite back and gained a couple pounds and it's already gone. I'm trying to stay on my liquid intake obviously during the flare but my second worst issue with flares are the constant trips to the bathroom. I no sooner drink and boom off I go. It's sometimes almost clear I go so quickly! I just don't understand how I'm supposed to stay hydrated when it just comes right out. At non flare times. I don't have this constant urgency despite drinking the same amount!! How do I know if I'm dehydrated? When I've gone to the ER for dehydration, they tell me as long as I'm urinating and it's not dark in color I'm good but does that apply with POTS? I feel if I could retain some of this liquid, my symptoms might resolve as well. Any suggestions would be greatly appreciated. Thanx!!

Hi everyone- I'm new to this site and prepared a long, detailed introduction over the weekend but somehow lost it in cyberspace - it's always difficult on this iPhone-that's what happens with us old folk and technology!! So briefly, 55 year old female diagnosed with POTS/dysautonomia just a month ago. I'm seeing an EP who has knowledge of POTS, which I'm thankful for because my general cardiologist seems a bit clueless and totally misdiagnosed me and I was a week away from ablation with another EP. Thank goodness that didn't happen because ablation is not indicated in IST, which was the original diagnosis along with SVT; and contraindicated in POTS as well. Anyway, tilt test pretty quickly diagnosed POTS and around the 20 minute mark also indicated orthostatic intolerance and my EP said it all indicates dysautonomia-obviously, neither diagnosis I wanted. Much more to rattle on about but I really would like to know how on earth it's possible to find the cause of POTS/dysautonomia - I read how important it is to treat the cause and not just the symptoms but my head just spins with overload - mitochondrial, mast cell activation, Lyme, and on and on; where do you even start? My EP doesn't seem too interested in exploring this and keeps talking Mayo, Vanderbilt, etc but I don't know how I would get to any of the main centers-not a fan of flying. Are there any basic tests that might help in possibly finding a cause? My endo is helping when I call her and I've just been diagnosed with hyperthyroidism from apparently too much synthroid so she stopped that for five days and i just restarted at a lower dose and she's ordering some adrenal studies as well. Any suggestions would be greatly appreciated. Thanks!