Brye

Thanks for the suggestion. There are nursing jobs that are less stressful so that has possibility eventually. Masters, I've considered, I have such horrible memory problems though I'm not sure I could pull it off. I have a hard time even reading a book without having to read some of the sentences over because I forgot what I've read. I also have a hard time remembering to take my own meds, it would be kind of scary to be responsible for someone elses. I'm hoping for some improvement and if/when that happens there are a lot of possibilities!! Thanks! Brye

I tried to return to work as a nurse and my cardiologist wouldn't write a return to work note without the risk of syncope included in the note. My employer wouldn't let me come back I guess because it was too high of a workers comp risk if something happened at work. There went that job!! Brye

I have Bradycardia with my POTS. That's actually how it started, severe brady at rest and HR's in the 160's when up. It still runs slow but I think now it may be due to the meds. Doesn't speed up like it used to so I'm thrilled about that. Hope you all get some answers tomorrow!! Brye

Praying, hope the next update is a positive one!!! Isn't a side effect of midodrine bradycardia, maybe that's why they decreased it! Brye

Thanks for sharing. It's 106 outside here right now. I may give up the good fight and splurge for one of these. My kids LOVE to be outside!! Brye

My beta blocker has helped my hand tremors some too! If I miss a dose for some reason that's one of my clues I missed it. Brye

Wow!! That's so scary!! Glad she's OK now. When I was started on my beta blocker my HR was still really slow (40's) but when I stood it went up to 160's just from standing. They started it when I was in the hospital though so there was a monitor on at all times and a pacemaker near by if needed. My HR gradually picked up and I was able to stay on the atenolol. Hope they find the right combo for her!!! I always said for me if a pacemaker would improve anything for sure sign me up. Maybe that'll be what she'll need in the end. Keep us posted. Brye

Hand tremors are getting worse for me as well. For me it's worse with stress. I struggle a lot during summer because of heat and my kids being home from school. I think it's stress that's making mine worse! Haven't found a way to control it. Hate it though, that's another reason I tell my friends about my POTS. I don't want them to think it's some type of withdrawal. Brye

Exercising regularly has helped me a lot. Still can't go back to work but it's helped increase my standing length of time and endurance. Also I cannot miss a dose of my atenolol without feeling worse. Thank goomdness for my meds!! Brye

1. fainting 2. fatigue 3. brain fog 4. nausea 5. hand tremors Brye

I just responded twice to this and both got deleted somehow so this will be short. My HR was in the low 30's when I was 1st diagnosed with POTS. No one was very concerned about it even though I was lightheaded, fatigued, and fainting. It was just that low at rest and when up it was 160's. It has improved, not sure why, maybe I'm just finding a happy place with my meds. Low 40's occasionally at rest and still some low BP's. One doctor said "people your age don't die from HR's in the 30's (I was 35) GREAT!! Hope they can give you some good advice. I've considered a pacemaker but not sure that's the answer. Keep us posted. It's hard when you have to go so far for an ER. You need a heart monitor so you can send the rhythms over the phone. Brye

I had that after being rear ended by a semi in my vehicle. I was told it was probably due to the whiplash. Haven't had it repeated so not sure if it's resolved or not. Not having any problems with it though! Brye

Haven't noticed it in the car. I'm normally the driver so that's not a time I'm watching. I'll try to look next time I'm in the car! Brye

Airports set mine off every time. I usually check my pulse to see if it's accurate when it's going really fast. It's normally a bad read! Brye

That's a tough one. I'm a nurse and I feel like if I need to be "pushy" with a doctor it's time for me to find a new one. The ones I've felt like I needed to be the one to push to get things done are no longer my doctors. I've now found a couple doctors who are very willing to listen if I have a concern and very willing to offer their suggestions as well. Hope you find a doctor you can work with!! Brye

This sounds very similar to my symptoms. I thought I was havinga stroke of some kind. I don't get a HA with it. It almost feels like tunnel vision surrounded by prisms on all sides. It normally lasts about 20-40 minutes for me too. After ruling out a brain tumor of some kind I was told it was an optic migraine. Fun fact ... if I feel one coming on I load up on caffeine and it seems to shorten the duration. I've heard of people totally losing their vision from these. Scary!! Brye

Do you take florinef. I have a lot of swelling but I figure it's from that and the high salt diet. Brye

"temperature wars" cracked me up yet also sums it up at our house hold. I developed severe POTS after pregnancy but it was pregnancy #4 in just under 6 years. Too much for my body to take obviously. Looking back though I had POTS like symptoms during all my pregnant times that were just associated with being pregnant. I was a pregnant fainter, had a ton of ankle swelling, lots of fatigue and shortness of breath. I have 4 healthy babies now though and no regrets. My POTS was diagnosed as severe POTS but I've worked my tail off to try to get back in shape a bit and I'm back to a very tolerable level. I can stand, walk, drive, and even take my kids to the park if the temp is right. I wouldn't change a thing!! Brye

I take it twice a day, breakfast and dinner. I haven't had those symptoms though. I take it twice a day so my BP doesn't drop in the eve when I'm up and around. That can be my busiest time of day with 4 kids needing baths and getting them ready for bed. That's why I take it twice. Brye

I have an Internal medicine doctor I see locally. He helps me with med refills, ordering labs, general illnesses, and fall injuries. I drive 3.5 hours to see an EP Cardiologist that I see every 6 months. That seems reasonable, this last time we didn't make any changes but they are at least available to call if I have questions or problems. Brye

My disability back pay was from my last day I was able to work. Not sure if states vary on that. I didn't apply until about a year later but they back paid me from the date I last worked. Happy for you!! What a relief!! Brye

Wow! I hope not!!! However I guess it wouldn't surprise me if it could. Meds, electrolyte imbalances, heart rhythm problems, scary. It seems like when you hear of young people dying who make the news frequently "they had a heart condition" I always figured if I suffered a sudden cardiac death that's what people would say "she had that heart conditon" Even if that wasn't the cause. On that note ... off to bed for me. Good night!! Brye

I have a lot of leg swelling. I figure for me it's a combination of florinef, high salt diet, and some peripheral vascular insufficiency. Mine improves by morning normally! Brye

I pass out around twice a weeek. teecee ... I can't believe you were denied if you're passing out that often. I'm an ER nurse and fainter. I had "high risk for syncope" in an initial application form filled out by my doctor and it was approved without an appeal needed. I tried to go back to work but was told it was a workers comp nightmare to hire a fainter. Amazing how each application must be treated differently. Hope you have better luck and don't give up. Brye

I was officially diagnosed with POTS syndrome 3 years ago after my 4th child was born. Looking back though I played college basketball and had 2 concussions close together. I was diagnosed with post concussive syndrome. I had a horrible time recovering and I think I developed POTS at that time actually. I ended up being forced to give it up by the team doctors because I just wasn't getting better. Some symptoms were probably from the concussions but I also had exercise intolerance, fainting, hand tremors, memory problems, and fatigue. This was back in early 1990's though and I don't think they were even diagnosing it back then. The good news is I recovered eventually and it really didn't kick in again until 3 years ago. They say younger POTS patients have a chance of it going away as they get older, maybe that's what happened with me? It'll be interesting to see how many have a reoccurrance later in life. Hopefully this won't be the case. No Ear problems here though. Glad you found a good doctor!! That's half the battle! Brye