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Looking For Understanding Dr.


hollie
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Hi all. I've been having issues, like a lot of others out there, finding a Dr. who understands POTS and not blows me off like I'm crazy and over-dramatic. I found an internal med. dr. that I thought was great, but now she is leaving the area and won't even see me again. I've only seen her once (about 2 months ago), but she told me to come back if the meds I'm on didn't help. I've seen my primary dr., two OI dr., a neurologist, and cardiologist at Mayo in Rochester, MN and they're not too compassionate and just blow me off and say drink more... eat more salt... etc. (Everything I already know.) I don't think I could possibly drink any more - I'll float away!!! They all act like it's no big deal. What do they know - they don't live with it all day, every day!?!?

Anyway... I'm wondering if anyone out there has found a dr. in the area that they are impressed with. I think I need to try a different med. I've been trying a beta blocker for about 2 months, but having strange affects. I was doing well, but now I can see myself get worse every day again! I just need someone who will take me seriously! Any suggestions?

Thanks!

Hollie

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Hi Hollie,

I apologize in advance if this comes off as me being insensitive, or that I don't understand, but I do, this is just how I truly feel. However I want you to know that I do think your symptoms and such are real, and I do care that you feel healthy.

In regards to all of your doctors telling you that you just need to drink more, eat salt, and exercise, they are right, and that is about all they can tell you. I go to Mayo, and have very severe symptoms, and am dealing with different doctors than you (most likely) because I am in Pediatrics, but that is what they tell me too.

I am on medications and such that have made a tremendous difference, but the salt, liquids, and exercise have made just as much a difference. I know you said you are drinking and eating salt, and you literally can not take in anymore than you already are. That is where I am at with things as well. Just remember, what the docs are telling you about liquids and such IS really all they have to offer. There really are not that many other meds out there for us to try...this is just a sucky illness that doesn't have a whole lot of treatment options. You said you're on the BB but its doing weird things. Tell your doc that, and try and get put on a different BB.

There are two things that I am trying right now since there isnt much more the doctors can do at this point. I am trying to take salt tablets to increase my sodium since I am already taking in a lot of it. Also I have been seeing a psychiatrist at Mayo to learn Biofeedback...in hopes of getting rid of some of my symptoms in particular by doing this, and also to learn an effective way to control them once they do appear.

Sorry that I dont have a doctor to reference you to, if you are really uncomfortable with the doctors you are seeing at mayo, I could ask my peds doc what adult docs are good at treating pots, but I have a feeling its just going to be the same ones you are already seeing.

If I were you I would look into perhaps changing your BB, and seeing a psychiatrist to learn biofeedback skills...but I would go through the doctor who you feel most comfortable that you have seen thus far.

Good luck,

Mary

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That's my issue. The dr. I've felt most comfortable with is leaving. I didn't know it until Tuesday this week, but she is gone at the end of the week. I don't even know who to talk to anymore about even trying a different BB. I just feel lost!

Hollie

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If I were you I would call in to your doctor that you like that is leaving at the end of the week, and ask her to refer you to someone else who she thinks is a good fit for you. Then look into seeing them about your BB and POTS in general.

Always remember, that even though you are lost and scared right now, everything will be ok, I know thats hard to believe sometimes, but its true, you will be alright, no matter what gets thrown your way.

Good luck!

Mary

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I'm not sure if you'd be up to a trip to the twin cities for your appointments, but the doctor I had in St. Cloud who is now only at the University, was wonderful. I can't say he had any more ideas than what already has been mentioned by your current doctor, but he is very understanding and I miss having him as my doctor. The two other doctors that I now have the option of seeing either think I have CFS and the other one told me to seek physiciatric speciality care????? And these guys are electrophysicologist... so I'm also hoping to find someone else as I can't tolerate driving to the cities right now. Just PM me if you want his name.

- Tammy

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If you will travel to the Twin Cities I have a great doctor for you. She is a cardiologist. She actually has 7 POTS patients! She has called Dr. Grubb to talk to him about her patients. She really knows a lot about POTS and is always willing to learn more. Her name is Pamela Paulsen. Here's her contact information:

Cardiovascular Consultants, Ltd.

3300 Oakdale Avenue North

Suite 200

Minneapolis, MN 55422

Main Phone: 763-520-2000

Main Fax: 763-520-2099 or

North Memorial Womens' Heart Clinic

2855 Campus Drive

Suite 550

Plymouth, MN 55411

Main Phone: 763-520-4949

Main Fax: 763-520-4950

If she's not taking new patients, leave a message for her nurse. A nurse will call you back and probably ask you to fax your health history to the office for Dr. Paulsen to look at first. I think there is a good chance she would see you or you could ask your current doctor to refer you.

Bren

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Thanks for all the help! I will try the one in the cities. It's only about an hour from me - not bad.

Boy, I love this network! It's so easy to help each other out!

Hollie

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