dkd

Thanks!!

I had the nuclear stress test yesterday and I heard back from the tech today (not the doctor--a little disappointed in that).

My ekg changes were still abnormal when I did the treadmill part, but the nuclear imaging of my heart was normal. All areas of my heart were getting blood flow, so no heart damage-yay!!

Itchiness was the main reason I went to a gluten free diet. It seems to have helped.

I would like to know also since this is my worst symptom. I have NCS also, and feel short of breath after standing.

I had a pulmonary function test at my GPs office that suggested 'possible neuromuscular disease' due to air trapping. She sent me to a pulmonologist and he repeated the test and he said it was normal. I don't feel 'normal' though

He didn't give me any answers. Told me to come back in 6 months, but I didn't go.

Sometimes I feel like my diaphragm is tight, so I wonder if that is restricting my lungs? I don't know. Very frustrating!!

Thank you. I'm not sure whether I read it somewhere or a doctor told me, but a lot of women can have a bad regular stress test, but the nuclear is ok. I'm not too worried about it. I had a pulmonary function test once that said I had possible neuromuscular disease and I was all upset and the repeat test was perfectly normal. So, I'm trying to not get too upset about this either until I know the full picture. I'll let you all know how it goes.

I would go to a cardiologist and get checked out. I too have shortness of breath and weird feeling in my stomach. I also have pressure across my upper chest, throat, and up into my face. I had a treadmill stress test a couple of weeks ago and it showed some abnormalities, so I'm supposed to have a nuclear stress test sometime soon. We also just had a forum member who found out she has a bad heart valve. So I really think you should see a cardiologist. Best wishes to you!!

My HR does that. I really don't worry about it. But I don't know if it's anything to worry about or not?? I'm just glad mine stays below 100!

On the atenolol--- My doc told me he had a list of bb's that we could go through till we found one that I could tolerate. I tried atenolol, acebutalol and then settled on betaxolol. Maybe you can call your doc and see if you can try a different bb.

Have you tried taking 25 at night and 25 in the morning? Maybe that would make you not so tired? But check with your doc to be sure.

Thank you corina!!

Just heard from the doc--my stress test showed some EKG changes that might mean some damage at the back of my heart--so need to have a nuclear stress test now

I had very low vit D (8). Was given a prescription dosage (50,000 IU) once a week for 6 or 8 weeks. My level came up to 44. I didn't notice any difference in how I felt. So, I really don't feel like it was related to my dysautonomia. But hey, who knows???

I know how you feel. I've had two different neurologists totally contradict each other and some of my tests contradict each other. It's very frustrating and you don't know which one to believe.

I've spent years thinking that one thing was wrong and then another doc disagree with that, so that know I don't know what to believe. I keep thinking I'll get a third opinion, but I haven't yet.

Now, in your case, a possible brain tumor sounds very serious, so if you don't get any answers soon, please do go for another opinion.

Best wishes to you!!

I haven't been diagnosed with high adrenaline, but I do get little surges--when the phone rings, when my hubby snores, etc. But I'm wondering is there anything that can be done about it anyway?? I'm thinking all the meds are like CNS depressants and I can't go around stoned all day-lol. So, I don't know if I should persue that avenue or not?

Anyone know of meds that don't make you feel out of it? I'm on a beta blocker which helps the high heart rate, but I sill have other 'anxiety' type symptoms, even though I don't have anxiety (the adrenaline surges, numbness and tingling on face, pressure in chest and throat). The only other med that I tried was Lexapro and it made my symptoms worse.

Thanks!

Yes, if you have strep you need to go to the doctor. You don't want to try to wait it out. I have a friend who's son had strep and she didn't know it and he wound up with heart valve damage.

A 'good' doctor's office will do a culture as a back up to the test. If the test is negative, they should do a culture. But ask to be sure!!

I've never had strep as an adult, but I've heard it described as feeling like you have ground glass in your throat.

Hope you feel better soon!

No results yet. I did better on it than I thought though.

The very first one I did a couple of years ago, prior to dysautonomia diagnosis, was inconclusive because as soon as I stood up, my HR went to 135 and it only took a few minutes of walking to get to my target HR of 175.

Yesterday, it only went to 100 when I stood and took several minutes to get to my target--10 or 15 min. So, I guess that's a good thing. I was worried that it would be like the first one because being off my beta blocker yesterday, when I got out of the shower my HR was 140. That made me realize that I really need the beta blocker to keep my HR down.

Maybe I'll hear something today??

That was my thinking also, but wanted a second opinion. Thank you!!

Hi all,

I was told to not take my beta blocker for 48 hrs, and no caffeine for 12 hrs, but I forgot to ask if compression socks would make a difference in the results of the test. Anyone know??

Thanks!!

I saw this episode not too long ago. I've been watching reruns of the Golden Girls and find it to be hilarious!!

Aimes, what was your MCV? Just curious.

Mean platelet volume measures the size of your platelets. If it's low, they're smaller than 'normal', if it's high, they are bigger. Nothing to worry about really.

Lexapro didn't send me to the ER. but I felt awful after taking the first dose. I did not continue it. I've read some people say that you have to get used to it, but I wasn't willing to give it a chance. It made my symptoms soooo much worse.

I was wondering how your appointments went. So sorry that it's scary but hopefully they are on the track to getting you better. I know my fear is thinking that I "just" have dysautonomia but there is something else majorly wrong going on.

Sending hugs, prayers and well wishes to you!

No, it is not normal. And I'm hoping you get to see an electrophysiologist. Mine looked at my holter monitor results and asked what I was doing when my HR was 140, and it was when I was washing my hair. I said "should someone's HR be that high when when they're washing their hair" and he said no. The regular cardiologist that I had seen a few months before just told me I was out of shape and needed to exercise more. Yours is a lot worse, so I can't imagine them thinking that you're normal. I really hope you get some answers soon.

Seems like you need a full workup by the cardiologist. You might be helped by having oxygen but you need to figure out why your heart is not getting the oxygen to where it needs to go. The 30th is just next week--hang in there.

Maybe they won't stop yours? Guess you'll just have to wait and see what happens. Do you know what your heart rate does when your oxygen drops? I'm not sure you can correlate it anyway???

Hope you get some answers soon!

For me, they calculated my target heart rate, 175, and let me go until I hit that HR, which didn't take very long--just a few minutes of walking. I was at 135 when they hooked me up. But they will let you run if it takes that to get your HR up.