Newbie From Idaho

[Katti]

Hello!

After searching for a couple of years I think I am nearly at the end of the "what's wrong with me" journey. I pretty certain I have POTS. I have the rapid pulse (> 40 bpm increase in 10 min) when I stand, the diziness, gastoparesis, fatigue, etc, etc.

Anyway, I live around Boise Idaho and am having trouble finding a doctor who can diagnose and treat POTS. I think I will try to get into Dr. Dolack in Seattle and make the journey out there. Does anyone out there have any suggestions on other doctors in the West? For anyone who has had to go out of state for care, have they enlisted te help of their local doctor to help? How long have they had to spend at the out of town doctor to get treated? Any other words of wisdom?

Thanks for your help. I have really gained a lot by reading your posts on this forum. I'm hoping to feel better real soon.

Finally!!

Katti

[morgan617]

Welcome Katti! I was born and raised there. Waaaay before you I am sure. I live in Washington and all I have to say is, my experience up here is no better than what you are getting there. I'm really sorry, but I don't believe there are any doctors west of Cleveland or Mayo or whatever that have any experience in this. You may find a doctor who will work with you, but having been a nurse in the pacific northwest for 30 years, I can tell you, we are way back in time on this.

Your best bet is to find a cardiologist or neurologist and ask them up front if they are familiar with POTS. I just don't want you going through what I have. This is not the place. The U of W does nothing with POTS. My primary checked.

If you have the money to spend, there are doctors, they are just further away, but you gotta kiss a few frogs first.....morgan p.s. how's the snow down there????

[belayergirl]

I'm in Fort Collins, Colorado (yah, I know 10 hours from Boise), but I have had pretty darn good luck with some of the doctors from Heart Center of the Rockies here in Fort Collins. I was diagnosed maybe two years ago with POTS and NCS, after several years of struggling to get someone to take me seriously. My family doctor referred me to a cardiologist at the Heart Center, whom I adore, and this summer he referred me to an Electrophysiologist who has been wonderful! There are two EPs there and both know what they are talking about, but one definitely has a better bedside manner.

Not sure if this helps, but it might be closer than being forced to go out East.

Good Luck! And let me know if you want names and numbers, I am more than willing to help.

[Katti]

Thanks for the input, I was afraid that would be the response. I would love to get the name of your doc in Colorado. That wouldn't be too bad. No matter what way I go I'm up for a flight. I'd like to avoid having to go clear back to Ohio if I can find any help closer to home. Compared to many on this forum, I have a mild case but it is nonetheless very debilitating to me. I keep telling my husband that it is not a problem, as long as I'm laying back in my La Z Boy all is right with the world. Now if only he'd work two jobs and take care of the kids and the house, we wouldn't have to fix me at all.

I haven't had much luck with Cardiologists so far. Their responses are along the line of "It can't be Syncope because you haven't fainted" or "aside from Tachycardia, there's nothing wrong with your heart". Not sure where to go with that.

Do you find that when you go to doctors in Ohio or Mayo or whereever that you need to get refered from another doctor? It doesn't matter for my insurance really. I just don't want to have to convince my doctors here in Boise that I have this condition, when they have never heard of it. Just one more step, and darn it, I'm TIRED!!

[Katti]

Morgan-

I forgot to mention that while you were born and raised in Boise, I was born and raised in Moscow, not far from Spokane. Small world. And our snow is nothing compared to what you've got going on up there.

Have you heard anything about the Seattle Doctor on the physician's list? Dr. Dolack? He's out of Swedish hospital in Seattle. I'm tempted to give him a try. My mother contacted his office and they sounded good to her. (Yes, I know, my mother is still trying to take care of me at age 38- so spoiled)

Katti

[belayergirl]

I have a fairly mild case as well, compared to many. I'm really hoping to grow out of it , maybe that's wishful thinking. I have passed out three times and the dizziness goes in flares.

As for cardiologists at Heart Center of the Rockies, I really like Dr. Whitsitt, but he admitted that I was past the course of "orthostatic" 101, when he couldn't find my bp upon standing. That's when I was referred to Dr. Nath (EP), he knew what he was talking about, but was only in the room with me several minutes over two appointments... Because of an insurance mix up I had to see a different EP for my third visit, Dr. Johnson. He was fantastic, very open to my opinions about meds etc... This would be my recommendation. The website for Heart Center of the Rockies is, very fittingly, www.heartcenteroftherockies.com. The website has bios of doctors etc...

Fort Collins is a cool town if you do make it down this way, make a mini vacation

[morgan617]

Katti, I worked at Gritman for almost 4 years and went to the U of I. I had one of my babies there. It's small world.

I haven't heard about any docs in Seattle. I thought of going to Portland OHSU, but am just too tired at this point. I'm kind of past pursuing every avenue, and really tired of being labeled as crazy.

There is a site you can go to and see if doctors have ever been in trouble or anything in this state. If you want it, just pm me and I'll send it to you. morgan

[StaciF]

On 2/4/2008 at 4:59 PM, belayergirl said:

I'm in Fort Collins, Colorado (yah, I know 10 hours from Boise), but I have had pretty darn good luck with some of the doctors from Heart Center of the Rockies here in Fort Collins. I was diagnosed maybe two years ago with POTS and NCS, after several years of struggling to get someone to take me seriously. My family doctor referred me to a cardiologist at the Heart Center, whom I adore, and this summer he referred me to an Electrophysiologist who has been wonderful! There are two EPs there and both know what they are talking about, but one definitely has a better bedside manner.

Not sure if this helps, but it might be closer than being forced to go out East.

Good Luck! And let me know if you want names and numbers, I am more than willing to help.

Can you please send me the name of the doctor you see. I am brand new to Ft. Collins, and although I see and will continue to see Dr. Grubb, I need someone local for emergencies. So far I have seen a local cardiologist and a local “Dysautonomia specialist” nurse practitioner… both very nice but both told me that they cannot prescribe any medications for me that are used for off label purposes. I have a very complicated, medication resistant case so 4 of my meds they won’t prescribe. They won’t even prescribe my infusions! If you have PCP in the area that you recommend and a gyn, please send that over too. Thank you!!!!