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Newoldpotsie

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About Newoldpotsie

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  1. 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
  2. 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!
  3. 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
  4. 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!
  5. 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 h
  6. 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 eas
  7. 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.
  8. 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.
  9. 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 ar
  10. 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
  11. 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.
  12. 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 annoyi
  13. 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 orig
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