metoo Posted March 27, 2005 Report Share Posted March 27, 2005 Hi,I travled to Mayo last April where I was dx with POTS after years of illness.As most of you know Mayo is not the greatest with follow up care,they are wonderful to get everything figured out but once you leave it;s hard to get any additional info from them.I understand because they are so busy.Mayo recommended Nadolol,my PCP would not consider changing it even tho I had major low hr...in the low 30's constantly along with other bad side affects.He did cut the dose in half.I wore a 30 day event monitor.It shows hr ranging from 30's to 170's.There were numerous episodes of sinus arrythmias,tachycardia,braycardia,PAC,PVT and SVT.In the 30 day period it auto recorded 115 events.So I was sent to a cardio who specialized in the electric part.He said,based entirely on the 30 day monitor report,that I do not have POTS! He said I had CFS and possibly sleep apnea.I told him I had no trouble sleeping other than occasional insomnia,do not snore and once asleep never wake up during the night.I asked him if he is saying the Mayo mis dx'ed me...he said no he would never say that.I asked what exactly he was saying then and he said I had a mixed bag.Well ,I knew that! So then I asked about all the hr stuff,he said "oh thats not that bad...it's nothing to worry about".He told me to do a seach for CFS and see if I didn't agree with him.I did...according to CDC website I do not meet the dxing criteria,it's a list you must have 4 or more of the symptoms and I don't.His course of action...stop taking all meds and ride an exercise bike every day...he said in 6 weeks when I come back for a follow up he expects me to be better.WOW! So...what do you all think? Thanks! Quote Link to comment Share on other sites More sharing options...
blackwolf Posted March 27, 2005 Report Share Posted March 27, 2005 Dear Metoo,Sounds like another doc who needs to be fired to me.I have both POTS and CFS, they have many things that do overlap, however..I say this doc dropped the ball.It is very common to have several dx's and several overlapping treatments.I'm not familiar with Nadolol, so I can't comment on it's use. But most POTS patients have to try different drugs at different doseages before getting a drug, or drug combo, that works.blackwolf Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted March 27, 2005 Report Share Posted March 27, 2005 OOOOHHHH NNNOOOO! First, I'd go home climb into bed and cry! Then I'd get out of bed, have a good cup of coffee and get really angry!Then I'd take paper and pen and start thinking...is my pcp on the same page with me? with Mayo? Does the pcp think Mayo just made up the diagnosis? What is going on?Then I'd figure out if I should go to a different electro-cardio doctor or just forgetaboutit and remind my pcp that Mayo knows more than this local electrocardiologist! If the pcp is thinking that something in your body changed then you should be reevaluated by someone who KNOWS about pots! I am so sorry that you have to go through this!!!You can always call out to Mayo and ask for guidance!!! Yes, even now! It will take a week but you will hear back.Remember we have to deal with the "garden variety" (nothing special) doctors while we are home, we can't be trekking out to Mayo for ear infections or regular maintenance...If it helps, let me share a little snipit of my recent frustration with a "local garden variety cardiologist". My doc does the echo and I know my heart is beating all over the place...dancing to the beat only IT hears...and when I'm done he said the "muscle was fine"/did not even address the electric till I suggested the ECG and then tells me I should NOT elevate the head of my bed...when clearly on ALL documentation in my Mayo files AND every research paper states that pots people should elevate the head of the bed! Was anyone even reading the Mayo files???Oh, well, we must be our own advocates. I think it is always harder for us when we loose our strength or our self esteem gets bruised.Do get angry metoo, and then figure out how to better communicate with your pcp about this whole ordeal. It sounds like the electrocardiologist is saying your diagnosis is "out of shape" I vote that you put him "out of your care"!Good luck, tell us what you decide...frustrated for you, tearose Quote Link to comment Share on other sites More sharing options...
yogini Posted March 27, 2005 Report Share Posted March 27, 2005 I totally understand how you're feeling because my cardiologist doesn't know much about POTS and has sometimes given me advice which wasn't in the right direction. However, at least he'd heard of POTS and knew enough to send me for a tilt test pretty quickly. I would get a second opinion, because you do need a local doctor to help you through this. You should check out the list of doctors on potsplace.com. Hopefully there is one near you.Also, did you show your Mayo paperwork to the EP? I find that I have gotten a lot more credibility since I started carrying my test results around with me everywhere.-Rita Quote Link to comment Share on other sites More sharing options...
Merrill Posted March 28, 2005 Report Share Posted March 28, 2005 Hi, metoo ... it is believed that daily aerobic exercise can help "reset" the autonomic nervous system... my guess is that's why he told you to ride the bike for six weeks and then tell him it worked. He expects that it will! And maybe it would! Wouldn't that be marvelous? Many people here wouldn't be able to do that ... and they certainly wouldn't be able to give up the meds that help them function AND exercise daily. You don't say what drugs you're on other than nadolol (which is beta blocker, right?) I'm a little confused about whether Mayo had put you on meds or not ... and what you've decided to do there. If you didn't think this doc was helping you with a care plan that was consistent with Mayo, then I too think you should find another doctor who will.Keep us posted on what you decide to do!Best,merrill Quote Link to comment Share on other sites More sharing options...
metoo Posted March 28, 2005 Author Report Share Posted March 28, 2005 Hi,thanks for the replies.Mayo did put me on the beta blocker.That is the only med I take for POTS but I do have others meds that I take for various things.I will not stop taking those as I know they help what they are prescribed for.Even though I did not completley agree with this new dr have tried to reduce the dose as he told me,I am more tachy than usual and feel awful...also I have tried the exercise bike.I just can not do it.Maybe if I was still on BB I could ride the bike,but the combo is just too much.I am trying to do what he said in hopes that he is right.I would love to feel better.I just don't think this plan is right for me.I am going to try to tough it out a little longer to see if it gets better.Thanks! Quote Link to comment Share on other sites More sharing options...
calypso Posted March 28, 2005 Report Share Posted March 28, 2005 My take on this: Get on that bike and pedal your little heart out. Then, in six weeks, if you're not better, you can at least say you did everything he asked you to do. The burden will be on him to figure out another plan and he will quickly learn that exercise bikes don't save people from very complicated illnesses. They may help, but they won't correct a multitude of hormonal/cardiovascular/etc. imbalances.I'm not trying to be negative. In fact, I think you probably will get a little better, if you stay disciplined and do the exercise. But I don't think that's the "cure."Amy Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted March 28, 2005 Report Share Posted March 28, 2005 My 2cents. I would call Mayo and leave a message for Dr. Low or whom ever you saw. Remember it takes 3x and faxing your questions---they will call. I would also fax the results of your 30 day monitor, and their EP doc can review it.I know how important it is to picture what is expected and how its supposed to work. Don't shrink back just because you have already been to mayo. That being said I would do the exercise bike even 3 minutes a day maybr 2xday, then add extra minutes per day. Make sure you can talk and arent forcing too much in that time. Go slowly and add more when ready. MiriamALSO VERY IMPORTANT: lie down on floor and stretch when done, this is when your BP is most likely to drop. So you can do floor exercises and stretch.!!!! Quote Link to comment Share on other sites More sharing options...
morgan617 Posted March 28, 2005 Report Share Posted March 28, 2005 I am so exercise intolerant, they do manual stuff on me at P.T. meaning they do all the work. The therapist said I was the weakest person he's ever seen that could still walk. I tried the exercise bike for 3 months, everyday and never got past 3 minutes. So don't feel like the lone ranger! I wasn't happy with any of my cardios, but sometimes you just have to choose the lesser of the evils, when you don't have a large supply of them. However, it sounds like you two just aren't clicking at all. Sometimes, it's like meds, you just have to keep looking till you find one that works. Good luck and don't give up. You might request he do a CPET on you and that will prove you can't do it without killing yourself to try and prove you can. It's a cardiopulmonary exercise treadmill. It can tell them a lot. I only lasted 3 minutes on that and it was about the closest I've ever come to passing out, but it showed them immediately why I can't exercise. It also shows how well your lungs work in conjunction with your heart, so an added bonus. It's no worse than any other treadmill, just hard if you are intolerant. morgan Quote Link to comment Share on other sites More sharing options...
Ernie Posted March 28, 2005 Report Share Posted March 28, 2005 Hi,What a wonderful doctor. I think I will also follow his advice and go back to work!Ernie Quote Link to comment Share on other sites More sharing options...
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