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post #31 of 56
Originally Posted by Sandtigress View Post
Yeah, I wasn't so concerned about the palpitations - the tachycardia was more concerning. But now the drugs are controlling the tach, with the palpitations coming back, which makes me wonder if whatever my unknown cause for the heart trouble in the first place is getting worse or otherwise exacerbating the problem.

I mean, normal people don't suddenly go tachycardic. You'd think people might want to know why their hearts suddenly started acting up....
I've heard of betablockers causing that, actually. They strengthen the contractions of the heart a bit, and that could be part of what you're feeling.

It's not as rare as you'd think. Women ranging from teens to 30s can get issues with tachycardia. One problem is our darn hormones! They work against us. Another is things like NSC/NMH/vasovagal syncope - it's fairly common though doctors act like it's some great mystery and many don't know what it is. And linked to both is blood volume problems. When someone gets dehydrated their heart rate can go up. If you're chronically in a state of lower blood volume your heart is going to try to compensate for that and the low blood pressure because your brain won't be getting as much blood as it should. Compensatory tachycardia, in other words. I honestly believe you have a little of this since the diuretics obviously made you worse and because your blood pressure is too low. Low blood volume can go along with a lot of illnesses, even a bad viral infection can trigger it.

Fun bit of info- women get told it's all in their heads, it's anxiety, panic disorders and so on because we're believed to be overly emotional. One thing that commonly gets misdiagnosed as "panic disorder" or anxiety is beta hypersensitivity. Basically you're more sensitive to adrenaline. Low blood volume can cause this lovely little affect because you'll end up with the same amount of adrenaline circulating is less blood than a healthy person has. Autonomic nervous system issues can cause it too (and again, many things can damage various parts of your nervous system - PMDD is believe to do just that, again with those darn hormones!).
I have some problems with this myself and cannot have anything with epinephrine in it.
post #32 of 56
Thread Starter 
Well, tomorrow is appointment one of the week. I really hope he believes that I'm sick. This year has been one disappointment after another, and I could really use something going really right for me. I have to present lab meeting this week, need to finish my proposal so I can start writing my Master's thesis, and these experiments are keeping me in the lab late which is exhausting. Plus, I just got word that my friend with the brain tumor has been given less than six months to live.

I really need something to boost my spirits right now...
post #33 of 56
Hon, is there a diagnostic clinic near you? We have a couple around here -- places that specialize in testing and analyzing and working their way through symptom by symptom until they figure out what the problem is, and then refer you to the right specialist. They're accustomed to doing real detective work for their patients, and I think that's what these doctors are failing to give you.

If there isn't such a clinic in town, I bet it would be worth a trip to Austin or Houston.

And you are NOT a hypochondriac. I think maybe the reason they don't take you seriously is that you're so young and pretty -- you look perfectly healthy, so maybe they just can't quite believe you're going through such misery.

I'm so sorry! Feel better soon.
post #34 of 56
Thread Starter 
There's not one that I know of, Carol. If I was going to pick, I would probably go with Dallas, since I have family in the area that I could stay with, though really, I do have friends in Houston and a cousin in the Austin area...

Today's visit wasn't really productive. He mostly wants me to wait for Friday and the dizziness specialist, though he wants to run some tests on my cortisol levels if the doc on Friday also runs blood tests. So I guess we'll see. Another five-day wait. Boo....
post #35 of 56
Aw Pam... We're familiar with the disappointment trip. But you didn't know this GP - and apparently it's someone who doesn't really want to get involved on his own....
post #36 of 56
Pretty much what I expected you to post. I'm sorry it was sort of a waste of your time, hopefully the specialist will be more useful.

If you never get any sort of answers, definitive results on tests they're trying, maybe look into dysautonomia? There's different forms and degrees of how much a person is affected. All the name really means is dysfunction of the autonomic nervous system - the ANS would be responsible in one way or another for most of you systems. Some people get this for no discernible reason, others get it from bad infections, metabolic problems, hormone issues, etc.
Only tests specifically intended to look for anything differing in the ANS will see anything.
If it's determined that this is going on secondary to something else they could at least look into causes and try to balance medications out better so as not to make you worse. And if that's part of the problem, you may also need to be very careful (more so as time goes by) as to what you allow people to test out on you. Every time I'm given something new I'm finding more drugs that I cannot take - I'm also finding out I can no longer take things I was able to 2-3 years ago.

If you haven't chatted with StarryEyedTiGeR, you may want to. She also has similar symptoms including the vertigo (meniere's). I pointed her in the dysautonomia direction, too, and hope that's what helped her get some answers.
post #37 of 56
Thread Starter 
Yeah, I have bad side effects to most of the drugs they try to get me to take, it seems, always have.

Who would I go to to ask about dysautonomia, s_w? I've already seen someone who seems like a competent neurologist who thinks its something systemic and not strictly neurological.
post #38 of 56
Originally Posted by Sandtigress View Post
Who would I go to to ask about dysautonomia, s_w? I've already seen someone who seems like a competent neurologist who thinks its something systemic and not strictly neurological.
You could ask a cardiologist, electrophysiologist, or neurologist about it. If you were to do so with no knowledge of it you'll likely get dismissed, again.

Research it first, see if anything makes sense to you. If a lot of things match up you look for one of these specialist that actually have some experience in that area. Though the ANS does so much in your body, a lot of doctors are surprisingly ignorant of how much it really does and what happens when there's a problem somewhere.
Maybe through looking up one thing you'll find suggestions for things we've all forgot about so far.
post #39 of 56
Thread Starter 
The doctor's office called me this morning - I was thinking "Oh no, tell me you're not going to reschedule again!" Turns out, the doctor from Austin will be in a little earlier than expected, so they asked if I wanted to move my appointment up! I said yes - hopefully if he wants to test for anything in house, he can, and get something back to me sooner. Yes, I really want a diagnosis!

Appt's at 12:15, wish me luck!
post #40 of 56
Good luck. I hope you find this doctor is curious and willing to work with you!
post #41 of 56
Oh YAY! I'm late for vibes, but I'm sending them anyway.

And if you haven't yet, DEFINITELY PM StarryEyedTiger!!!!
post #42 of 56
Thread Starter 
Thanks guys.

Well, this doctor is of the opinion that my dizziness and my other symptoms are possibly two different things. He suspects that I have a viral infection in residence in my ears - possibly from having chicken pox as a kid (think shingles-type thing).

So for now, he wants me on a relatively high dose of steroids for the next 12 days, and an antiviral to see if that helps me get better soon.

Who knows? Maybe the stress of a viral infection is leading to my other symptoms too, maybe its all related, or maybe I do really have two (or more) different things. I'm seeing him again in two weeks, and he says seeing another doctor about the other things is probably better, but to let him know if no one's doing it.

Getting a cortisol test tomorrow morning, and a CT scan of my temporal bone on Wednesday, and I guess we'll see where we go from there.

Thanks for the vibes guys!
post #43 of 56
Interesting theory. The ANS can be really messed up from viruses, or more specifically your body trying to fight them off. That would easily cause the heart rate and blood pressure issues.

Maybe he took you more seriously because there's no denying that lesion is there?

What sort of cortisol test is it? Blood or urine?
post #44 of 56
Oh wow - that's interesting. he's right and this clears up the dizziness!
post #45 of 56
Thread Starter 
Originally Posted by strange_wings View Post

What sort of cortisol test is it? Blood or urine?

Blood, thank goodness!

He wanted to order a 24-hour catecholamine test, but I quickly told him I had already had one done.
post #46 of 56
Originally Posted by Sandtigress View Post
Blood, thank goodness!

He wanted to order a 24-hour catecholamine test, but I quickly told him I had already had one done.
Hm, blood will only see whats there when they do that draw. Something like a 24 hour urine collection might be more useful - even if icky.

I probably should have had my catecholamines tested during my tilt table test. It might have led to a more specific diagnosis. But I don't believe anyone in this state even knows to do this...

Did yours look ok?
post #47 of 56
Thread Starter 
My 24 hour test looked fine - low end of normal or right in the middle of expected values.

They want a test early morning, so that will be sort of base level hormones for me, since they tend to rise naturally during the day. That means I get to go over the hospital at 8 in the morning on a Saturday, yippee!

I forgot to mention the best part of the day. When I dropped by the pharmacy to pick up my meds, the pharmacist reached into the bin for my last name without asking me what my name was. "First name Pamela, right?" Um, I'm not really there that often, am I?!
post #48 of 56
Thread Starter 
Boy, I opened up the pill bottle today for the anti-virals, and wow, what a pill! Here's a pic with a quarter (yes, a QUARTER) for size comparison.

post #49 of 56
Yup - Gary's wasn't blue, but he had to take them about - 8 years ago? They are real honkers, aren't they? Hope you don't have too much of a problem!
post #50 of 56
Wow. Big pill. I am a poor pill swallower. What works for me is to take it standing , stretch up your neck and look up at the ceiling while you swallow a big gulp. good luck
post #51 of 56
for optimum health
post #52 of 56
Thread Starter 
Another Friday, another doctor's appointment. I'll get the results of the cat scan I did last week, though I'm sure its clean.

What are the bets that he's still stumped? I know I still feel like crap, maybe worse than before.
post #53 of 56
Well, I know antibiotics make people feel sick... any way it could be the anti-virals making you sick? Are you still taking them?
post #54 of 56
Thread Starter 
I'm done with them - only a 10 day course. I wouldn't be surprised if all the prednisone was making me sick though.

I just realized I have multiple swollen lymph nodes around my neck - no wonder I feel terrible! I'm probably coming down with a cold. Well, its something new for the doctor to look at tomorrow. As if he didn't have enough already!
post #55 of 56
Geez - you just can't catch a break! is that time of year though. Gary's been sick with the flu, and I definitely have some kind of head cold going on... it's trying to work its way into my lungs.

It really sucks when the meds not only don't seem to help - but make us feel worse. It doesn't sound like any answers are in the offing for tomorrow.... but I sure hope you find someone to help you find them!
post #56 of 56
Sorry you have been feeling poorly. It might be helpful to check you temperature at the onset of chills and then again in an hour or so since chills and shaking often occur when fever begins. If your temp rises, it might help the MD sort it out since fever is more common to infection then panic attack for example. If you can, record your heart rate and blood pressure too. Also, try to get a baseline when your symptoms are minimal for comparison. Now, a little story... I know someone who had episodes of shaking chills, sweating and generally feeling terrible that occurred at 3 week intervals. He saw doctors for months. Lab work and exams were normal. So one day he goes to the clinic with a bad episode and the MD on duty, who had years of experience in tropical medicine, immediately recognized his symptoms as malaria (!) and confrmed it with specific tests. No one had considered that. He was treated and recovered quickly. Moral of story, doctors look for likely causes don't always ask the right questions to trigger tests for rare causes. Have you had any possible exposure to an exotic disease? Any out of country travel in the last year? Any insect bites with unusual reaction? Any animal bites? Best of luck to you in your search for relief.
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