JenniferInOhio

Thanks! No one said anything about a follow-up when I was at CC

Do you go to someone at Cleveland Clinic for your treatment or do you go to a cardiologist somewhere else? I'm just wondering what I should do...my husband thinks I should stick with the Cleveland Clinic, but I'm not sure.

How was I diagnosed? By taking my pulse supine, sitting and standing...but, my cardiologist wanted to do a tilt table test to confirm his suspected diagnosis. Symptoms 24/7? Yes, but they are very mild now. When I get out of bed in the morning, my heart rate goes pretty high. After 30 minutes or so (after taking my meds and drinking a glass of water), I'm good to go. My heart rate goes up throughout the day depending on what I'm doing (moderate housework, stair climbing gets it up there). Symptoms experiene during episodes? High heart rate and sometimes shortness of breath. What helps? 10mg of nadolol (a very low dose of beta blocker) and lots of water and gatorade. I also drink Propel (flavored water).

My neurologist suggested a low dose (81 mg) aspirin once per day to prevent migraines. I also take it for my heart related issues. I haven't had a migraine since starting the aspirin therapy (knock on wood).

Hi Lauren! I don't know anything about the EPS study, but wanted to say that I have SVTs, PACs, and PVCs and they were worse during my 2 pregnancies. Not horrible, but definitely worse than not being pregnant.

Hi ~ have they tested you for multiple sclerosis? With an MRI or spinal tap? The part with balance, walking and speech kind of concerns me. I know people with ms can have POTS.

I mean "wheezing." Where is that spell check?

Yep, that's the difference. I have an anaphylactic reaction to nuts. My lips, tongue and throat get all tingly and I have wheeing from my throat starting to close.

I don't have any experience with this, but just wanted to say that I hope you feel better soon. My tilt table test that I had at the Cleveland Clinic set me back several days. Frustrating isn't it?

I sort of have this too ~ it's usually more of a tingly feeling around the middle of my arm (elbow area).

Okay, so I went to my appt. with the nurse since I was having left sided sharp pain in my chest on Sunday and Monday. Of course, today I'm fine. First of all, the nurse at the cardiologist's office is not familiar with POTS, so I have to explain it to her...next she kept asking if I was short of breath with the chest pain. Well, how do I explain to her that I get short of breath because of my tachycardia, but I don't think the shortness of breath has anything to do with the chest pain? So, she goes and talks to the electrophysiologist there (not my regular cardiologist...who I've only seen for 5 minutes total...yes, isn't that sad?). He said it was not cardiac related...he did not even see me. No pulse taken, no ekg...just bp and listened to my heart. They sent me on my way. What a waste. And with gas prices this high, it was REALLY a wasted because I had to travel 30 minutes to get there.

Hi and welcome. I'm relatively new, symptoms started abruptly in June 2005 after a diagnostic laparoscopy. I'm sorry you are dealing with this. It is frustrating before and after diagnosis, unfortunately. There are not too many doctors who know a lot about POTS/dysautonomia. I'm not on florinef so I can't answer any questions about that, but there are several people here who do take it.

Congratulations ~ how wonderful!

Well, this is news to me ~ I have to get a cavity filled on Thursday. I didn't know I could have a reaction to the meds they give you. So, should I call and ask what medication they use?

Thank you ~ I feel better now, but I'm still going to my appt. tomorrow.

Emily ~ No, I didn't feel brushed off at all ~ I just went and read all the old posts. I'm not sure I'll be getting one now after reading. Decisions, decisions...

Sorry ~ I always do that!! (post my questions before I check the old posts...I'm still learning )

Do you guys usually get a flu shot? From what I've read here, it sounds like when you get sick, you REALLY GET SICK and that it can keep you down for a while.

I'm so sorry about your grandfather. My thoughts are with you.

Thanks everyone. I just got off the phone with the on-call nurse at my cardiologists' office. She had heard of POTS, but I don't think she was that familiar. Anyway, I have an appt. for tomorrow. She said it was not life threatening. She said it sounded muscular/skeletal. I didn't think it was life threatening or I would have been to the ER by now. I have just been to the ER so many times in the last 6 years with chest pain that was absolutely nothing. thanks again for the replies ~ you guys are a wonderful support system to have!

My chest has been hurting on and off since I woke up this morning. It is hurting right under my left breast, kind of a sharp pain. Seems to hurt mostly when I take a deep breath in and am up and around. It seems fine when I am sitting or resting, but as soon as I get up to do anything it starts again. It is not horrible, but definitely noticeable. My tachy is up 30 bpm like usual when I stand, but nothing out of the ordinary. Is this kind of chest pain normal? Please ease my fears of having a heart attack!

Hope you feel better soon! I read in another post that you work with children with autism and autism spectrum disorders. I used to be an SLP and worked with many of those children. They are challenging and interesting children (and a lot of them are SO fun).

I wish I could say that I have a great PCP to share with you...but, I don't. My PCP told me, "You are 30 years old, you are fine." This is after many trips to her to complain about chest pain, palpitations, tingling feet, shortness of breath....Then, she referred me to a psychotherapist. I would love to hear some replies with a great PCP and/or cardiologist. I live about 30 miles west of Cleveland.

I take 10mg of nadolol (beta blocker) and cut out caffeine (except for occasional chocolate). I have PACs, PVCs, and SVTs ~ I rarely have them anymore.

I'm a stay-at-home mom, formerly a Speech-Language Pathologist. I resigned from my job 2 years ago to stay home with my daughters. If I had to, I could definitely work now...I'm just a little slow getting around for the first 30 minutes after I wake up. What do I do all day? Clean, feed, and play with the girls. I can't clean the entire house in one day ~ it's a little much for me as I don't like my heart rate to be up for an extended amount of time. I do pretty much whatever I want except for very physical things like running, excessive stair climbing. When it's hot outside, I don't function nearly as well.