dkd

I'm getting over a cold and was able to take guafenesin (sp) with no problems. I could also take Benadryl at night. And I took Delsym for cough with no problems. What's weird is that my shortness of breath seemed better when I was sick. Now that I'm feeling better, it's coming back, seemingly worse than before I think the cold symptoms just masked my regular symptoms maybe???

He did have a segment on syncope not too long ago. I didn't learn anything from it. Seems like he doesn't give any real advice on conditions, just an overview.

Have you had a tilt test? When I had mine, I was told to not have caffeine that day. Sorry you had to deal with such a bad doctor. There are some good ones out there, we just have to keep searching. I hope you can find one who will help.

I have found myself skipping words when I sing to take an extra breath. I really miss singing in the car. I also have times when my voice just goes squeaky. Especially on high notes. Anybody know what causes that?? I mentioned it to an endocrinologist once (before I got the dysautonomia diagnosis) and she didn't have any ideas.

Maybe you could try a different beta blocker? I had to try three before I found one that didn't make my BP too low. I too am just starting to ride my recumbent bike. I can get 15 minutes at a time, but after about 5, I feel like I have no energy. I haven't taken my BP before during this time though. Hmmm... Hopefully someone has some better advice, but mine is to call your doctor and see if there's another beta you could take. Why does your BP go up in the evening? Do They know what's causing that? I see in your sig you've had thyroid surgeries so I'm sure that complicates things--to say the least!!

If it continues, I would go back and request she do some lab work. I'd want a complete metabolic profile to include: electrolytes, bun, creatinine, glucose, liver enzymes, total bilirubin and possibly a CPK to check for rhabdo (like tachy suggested above). You might also want a blood ammonia level. Do you think it's just dehydration?? Maybe try drinking more fluids for a few days and see if you can get it to a lighter color?

Did they draw blood for lab work? Did she investigate any further than just a urinalysis?

Could be an infection, so you should probably get it checked out. Also could be something you're eating?? Really it could be a number of things. Best to get it checked at your doctors office. Dont' be embarrassed!!

I watched a segment on vitamin D on the Dr. Oz show last night and he said that 3/4's of the population are vitamin D deficient. So, if that's true, it's more common to be deficient than I thought. I just had a tooth break this week and I asked my dentist if low vit D could have contributed to it breaking and he said no. Dr Oz said that it's needed for strong bones and teeth. So, who knows???

Oh, and I make two separate lists: a list of symptoms and a list of questions to ask.

I always leave a doctor's office wishing I had asked about something that I forgot. I do take notes in with me, but then I still won't ask about stuff--duh. I feel like I wasted a $350 consult with a neuro because I left out half of the stuff I wanted to talk to him about (he intimidated me a little also). So, take in notes and don't be afraid to ask whatever is on your mind. And write things down that they say back to you. I easily forget things once I get home, so I write down what they say on the paper that has my questions on it. Hope your appointment goes well!

You didn't happen to get a flu shot right before your symptoms in 2010 did you? I got one in Oct 2010, and 3 days later woke up with terrible left arm pain and weakness, and a week later had numbness in first and middle fingers that I stil have today. I also have tingling on left side of lips, random muscle twitches (eyelids and face mostly), and tingling in left foot. I have seen 2 neurologists and like you, all my tests are 'normal'. The last neuro said some people just have tingling and there's no reason for it -- say what??? I think there's a reason, they just haven't found it. I don't know if it was the flu shot or not, but I have my suspicions. I don't suppose there's anything that can be done for it anyway at this point. I have shortness of breath ( worse when shopping also) and it was really bad yesterday. Hubby asked me why I never asked to go to Vandy (I live really close) but I always thought I wasn't 'bad enough'. I am able to work, but I'm miserable most of the time because I stand on my feet. Anyway, good luck at Vandy and let us know how it goes.

I don't know if your doc is willing to let you try different betas, but my doc said he had a list of them and he'd just go down the list til we found one that worked. I took atenolol for about a week. It dropped my blood pressure to 90s/50s and I felt really tired and more dizzy. Next was acebutalol. I took it for just a few days and had a weird episode where my breathing was really slowed and I had pre-syncope. Then I tried betaxolol. I had no 'adjustment' period at all with it. It lowers my heart rate and my blood pressure has stayed in the 100s/70s. So, it's been a good fit for me. So, I suggest giving your doc a call and see if he'd let you try something else. Good luck!

I work with someone who also works in a doctors office and she says that a lot of the doctor's patients are low in Vit D, so I think it is very common in the general population. For years, we've been told to avoid the sun and use sunscreen if we are in the sun, so I'm not surprised in the least that a lot of us are deficient.

I have chest tightness/pressure and tightness in my throat. Actually it starts from the bottom of my sternum/top of stomach and goes to the roof of my mouth. Sometimes I feel sick to my stomach, kind of like when you're really really hungry. So I usually eat something to try to make it better. It doesn't help though. I have mentioned this to several different doctors over the last year (it's my worst symptom actually) and no one has any answer for it. It is worse when I'm standing, but I do get it when sitting also. My cardiologist just says that dysautonomia "can cause all kinds of symptoms". My biggest worry is what if it is something else, but I'm just blaming it on the dysautonomia and I'm trying to ignore it??? Something we all wonder about, I suppose.

My Vit D level was 8 (normal range 30-100). Dr prescribed a once per week 50,000 unit Vit D for 8 weeks. It came up to 44. I now continue (when I remember) to take a 1000 unit supplement per day. I did not feel any differently after it came up.

I have eyelid twitching that started in 2010 after I got a flu shot. It's most everyday, but not all day. Sometimes I get twitches in other places also (leg, abdomen, other parts of face). I've mentioned it to several doctors and they never address it.

I have trouble with my tank top type compression garment rolling up when I sit down and I get creases around my waist and under my breasts that don't look very good under clothing. I'm wondering if the ab binder does that? Thanks!

There are other beta blockers you can try---call your doctor and let them know you're having these bad side effects!! I tried three different ones before I found one that I could tolerate. Good luck!

I read a book recently about how doctors will say or write things just to cover their butts just in case something comes up later. So, your doctors note sounds like a 'cover your butt' statement to me. Your tests were normal, but it cannot totally exclude the possibilty that you might have it. I don't think a doctor would treat something that a test is negative for. If there's even a treatment for that anyway???

Thanks for letting us know.

Let us know what your cardiologist says. I'm curious!

I have seen 10 different doctors this year and my EP cardiologist is the only one that has offered any help, but he just put me on a beta blocker and dismissed me for a year. I'm fed up with doctors to say the least. I keep wondering if there's a cause? Is there something else going on that they haven't found yet? Is there anything else I should be doing? I'm reading a book right now about a guy that took 15 months to finally get a diagnosis of ALS. Once he found out, yeah he had a diagnosis, but it's a death sentence. So, makes me wonder if knowing would make any difference???? I don't know. I told the last doctor when the only thing she offered was Cymbalta, that I'm either going to get better or I'm going to get worse. I guess I'll just wait and see what happens.

I have read that betas may block the body's ability to 'feel' the hypoglycemia, so you might not know that you're hypogylcemic. I found this on wikipedia, so take it for what it's worth: http://en.wikipedia.org/wiki/Diabetic_hypoglycemia

I have constant ringing in my ears, but I notice it most at night when I lie down to go to sleep. I've mentioned it to doctors and they have no response. I've searched online for possible solutions but haven't found anything