Argh!!! Dr.'S!!

[Aquadiva]

Okay, so I am extremely frustrated. My daughter is not getting better, in fact, she is getting worse. I was just told by her dr. that she should just stick with the metoprolol, that drugs are just a crutch and she should eventually get better over time. I am so disappointed. Yes, I realize they may be a "crutch", but doesn't a crutch help you get by until you ARE better???? I could just scream. She is on the "list" to see Dr. Grubb, but I called yesterday and they said it could be a couple months yet.

Anyone know a dr. that is willing to try different medications that is taking patients? We are in MN, but willing to travel.

Thank you!

[juliegee]

Okay, so I am extremely frustrated. My daughter is not getting better, in fact, she is getting worse. I was just told by her dr. that she should just stick with the metoprolol, that drugs are just a crutch and she should eventually get better over time. I am so disappointed. Yes, I realize they may be a "crutch", but doesn't a crutch help you get by until you ARE better???? I could just scream. She is on the "list" to see Dr. Grubb, but I called yesterday and they said it could be a couple months yet.

Anyone know a dr. that is willing to try different medications that is taking patients? We are in MN, but willing to travel.

Thank you!

So sorry to hear about your daughter Surely there is help at Mayo in MN Have you explored that option?

[houswoea]

I live in MN too! Outside of St. Paul.

I have said this before... and some don't agree... but when I wanted to go to mayo and it was a forever wait, I asked for appointments from all angles of my problems, cardio, neurology, ect. When a doctor accepted my appointment, he knew what pots was but was not the expert. However, he got me in to see the expert the next day! Who actually was less helpful than the random doctor who agreed to see me.

I had to wait four months, but it was better than nothing. And they couldn't help me a ton, but agreed to keep seeing me for the next few months.

Sorry I can't be of more help!

Another tip though... I've found that while the st paul heart clinic and capitol neurology (through regions) can diagnose pots, they really can't do anything beyond it... they pretty much gave up on me.

[Aquadiva]

Well, we are at Mayo and that is the response I got, that medication really doesn't play a huge difference and she should gradually improve (gradually? Well, she is certainly not heading in that direction.). There are MANY drugs she could still try, but they really seem to like the "wait it out" approach. I don't agree. We realize there is no "cure", but I feel if there is something that might help get you through, why not? Isn't that what a crutch is? If you have a broken leg, you don't need crutches either! Your leg will still get better without it and much faster than anyone's POTS! Sorry, I am still very frustrated.

But...GOOD news is that I contacted her new primary, and talked to him over the phone. He has agreed to work with us and seemed to know quite a bit about POTS and the different medications. My daughter just switched over to him a couple months ago from pediatrics, but hasn't actually seen him yet. I can tell already that I REALLY like this guy and I know he will be much easier to get in to see and communicate with! What is the worst that could happen? We try some different things, and they don't work? I am willing to spend the time and $$ and take the chance.

[houswoea]

Well, my family and I are on that road too... we decided chiropractor/ nutritionist/ physical therapy was the route to take. It is expensive, but the nutritionist is willing to work with you to figure it out through supplements/diet and whatever... you could try that?

[Ashelton80]

Well, my family and I are on that road too... we decided chiropractor/ nutritionist/ physical therapy was the route to take. It is expensive, but the nutritionist is willing to work with you to figure it out through supplements/diet and whatever... you could try that?

Are you making any progress with any of those? The only thing that has helped me and at this point I feel like I've tried almost everything is seeing an atlas orthogonal chiropractor. And if this tells you anything my husband is a chiropractor and we drive 4 hours to see the one that specializes in atlas orthogonal and pay out of pocket for it too. Do you use just a regular physical therapist? I have thought about calling a local trainer and having him research my condition and have him come to my home, but I'm still afraid they won't understand that I am not a normal person and push me too hard. I tend to try to act tough and then fall apart later. I just wish the direction to take with this condition was more straightforward. My head just spins constantly trying to figure out how to help myself.

[MightyMouse]

I hate to be Susie-not-so-sunshine right now, but there are *plenty* of us who never got better at all. It really depends on how you got POTS in the first place. Since mine's genetic, and I got really symptomatic in my 20's (I've been symptomatic since at least 4 yrs old), sorry, there's no getting better. The best shot at improvement comes if you're one that contracted a virus, and the onset of POTS happens during or shortly after that. For some, the body seems able to heal over time. However, there are way too many of us who never got better for me to "buy" the "you'll get better over time" argument.

[Aquadiva]

I hate to be Susie-not-so-sunshine right now, but there are *plenty* of us who never got better at all. It really depends on how you got POTS in the first place. Since mine's genetic, and I got really symptomatic in my 20's (I've been symptomatic since at least 4 yrs old), sorry, there's no getting better. The best shot at improvement comes if you're one that contracted a virus, and the onset of POTS happens during or shortly after that. For some, the body seems able to heal over time. However, there are way too many of us who never got better for me to "buy" the "you'll get better over time" argument.

I totally agree. NO ONE knows WHEN or IF anyone with POTS will get better! And, I am NOT willing to just WAIT for SOME day to arrive IF it ever arrives. You have to live your life to the fullest every day, and I will not rest until we have exhausted every possibility of having it the best it can be. For some that will be better than others, unfortunately, but just because she "should get better over time", doesn't mean I will give in and wait while precious days/months/years pass her by. Sorry, but I don't give in easily, and I will not stop fighting until I am satisfied. Maybe I will NEVER be satisfied, but then I will just keep on fighting! I will do everything within my power to make sure she is feeling the best possible.

The good part is that she had a little over a year when she felt pretty good--and then BAM! It hit again. And, that may be what she is facing for the rest of her life, on and off again. But, hey, I will take that over always being sick! In the meantime, when she is sick, I need to help her feel as good as she can and be as normal of a teen as she can. MAN! Being a parent is hard--let alone being a parent of a teen-age girl with 2 chronic illnesses/diseases! It just goes to show that life isn't fair and we have to be thankful for what we DO have. And, for now, I know we DO have medications out there that might help her feel better. Maybe none will help, but they ARE out there to try and why should she be denied the opportunity to try??

I will get off my soapbox now.

So, Mighty Mouse, I am just curious, we don't really know when the POTS came about, but you mention that it is more likely of a recovery if she got it post-viral. It seemed that it was after anesthesia, but she had other things going on at the time so it is kind of hard to tell. I am sure I had POTS also when I was a teen and still have some symptoms, but was never diagnosed. I couldn't stand long enough to dry my hair, or once that was done, curl it, or stand for a hymn in church for some examples. I still get really sick and weak feeling if I stand in line very long, shop too much, get too warm, etc. I have to lie down or at least sit. So, I think it is possibly hereditary as well in her case.

[houswoea]

Ashelton80, I just started these things. I am super-duper skeptical that it will make a difference, but why not try right? I will let you all know if it works for me.