Electrophysiologist

[StaceyYount]

Hey all!

On Friday I have an appointment to see an electrophysiologist which you would think I would have seen after 11 years with POTS but got the diagnosis from Mayo so never really saw the need. Anyway the tachy has been much worse lately and my ekg at docs on Thursday showed some changes (but he did say could be due to the tachy being worse and terrible cough I have had for awhile now) and the echo results from last year that my primary felt should be checked out. Anyway my question is what should I expect? What tests will they run? I am hoping they have knowledge of POTS but we will see and i guess I am just nervous at having to go to yet another doctor go through telling this long history and well you guys understand. So any clues of what to expect and best way to get most out of this visit would be great.

[Guest Eliza]

Stacey,

My first appointment with my EP doctor included an EKG, lab work, orthostatic BP's, and a VERY thorough medical history. He also gave me lots of very good info on POTS. My doc is very knowledgeable on POTS, so hopefully yours will be too. I don't know what meds you are on, or what you have tried in the past....but he will get that history and possibly give you an RX for meds he wants you to try.

I know my doc started with 1 or 2 meds and then saw me every 2 weeks to adjust, discontinue, or add meds depending on how I was doing. It may be a long process depending on what you have already been through or tried.....but at least you will hopefully obtain a glimmer of hope that he will be able to make you feel better or function better.

I really hope all goes well at your appointment!!!!

[Donna F]

Hi

I was actually diagnosed in Oct of 2006 from a elec. , after seeing many "regular" heart docs. They are trained with Pots, because what i was told although i met him in the er, and 3 hrs later had a pacer installed, but i am blessed to have been saw by one, in patients with pots, the electrical system of the heart is what is causing lots of tach./brady/ so that is why u need an elec. instead of just a cardiologist. Many doc dont know that and i was almost left for dead til i met mine. So maybe it is a blessing for u 2 see him. What they did with me is sent me home with a monitor, every time i felt my heart either skipping or going to slow or fast i would call a num on the monitor, and they would keep me on the phone and let a monitor tech read it right then, so that is what i would recommend u bring up to them, and it picks up lots that most test didnt

Hope this helps

donna

[Rachel]

Stacey,

My appointments with my EP often included an EKG and/or blood work. They always included orthostatics. The doctor would also feel my neck and tummy, check my heartrate, and get caught up on new symptoms/changes in symptoms. Then we'd come up with a new treatment or continue with the same treatment if it was working (that only happened once!).

Ask lots of questions and give lots of info. Good luck. I hope all goes well.

Rachel

[Gena]

Stacey,

I had similar tests as the others mentioned with my EP at Mayo in Jacksonville. I really think very highly of Dr. Kusumoto at Mayo. He is an EP that is familiar with POTS and has an excellent knowledge of the heart's electrical funciton. He has treated POTS patients. He's very personable and patient and listens to everything you say. Regardless of who you see, I hope you find some answers and get relief soon. I'll keep you in my thoughts and prayers!

Gena

[Guest tearose]

Ditto to all the above types of poking and testing...nothing to fear!

Expect the 12 lead EKG and maybe an echocardiogram. If needed they will order a cardiac MRI...or PET scan of your heart even.

It sounds like you will be in good hands!

Good luck on Friday.

best regards, tearose

[StaceyYount]

Excellent thanks everyone!! I hope he is knowledgable too and maybe can shed some light on why tachy is worse and weird ekg/echo readings.

Gena,

Thanks, i thought you were seeing or had seen that doc at Mayo and that will be next place if we get no new ideas from this guy! Thanks for reminding me about him!!!

I will let you know how it goes. You would think after all the docs I have seen I would get better at not being nervous but nope!

All I guess I can do is have hope and we will see maybe he is the one hai na? (sorry some hindi slipped in lol)

Thanks again!

[corina]

good luck, stacey!!! let us know how it went,

corina

[StaceyYount]

Well been put off a week cause a headache decided to make an appearance! So will let you guys know after next Friday thanks again!

[StaceyYount]

Ok finally after 2 bad headaches tomorrow is the day so if you can send some thoughts my way that would be great. Just hoping the doctor is helpful and it is not a waste of time!!! Will let you know how it goes!!

[Rachel]

Stacey,

I'll be thinking about you. Hope all goes well.

Rachel

[Tessa]

Hi Stacey

I also have an app. on Friday (with a Cardiologist). I also hope that the doctor is helpful...

Hope your app. turns out as expected

I thought this would give you some positive thoughts (as I see you love Bolywood movies).

Enjoy it!

Love,

Tessa

[StaceyYount]

Ooh thanks very much!

And Tessa you made my day AHHHHH Shahrukh!! Ahhhhhhhh! I love Bollywood movies! Don;t get me started though!! Do you watch too?

And i will be thinking of you on Friday!

[DancingLight]

Stacey,

Wondering how your appt went??

Hoping so much that it was helpful!

If not, I hope you will be able to go to the doctor Gena sees and have someone really try to help you!!!!!

Thinking of you,

Em

[StaceyYount]

Hey everyone

Thought I would update you on how it went. Well one disappointing thing is that I did not see the EP I just saw the cardiologist but he was knowledgeable and was going to consult with the EP. Funny story when the nurse did my blood pressure he was jabbering away and then saw my hr was 120 just sitting there and he said is that normal? And I said you should see it when I stand up and he said thats ok it going fast enough now! So doc came in and said well you have quite the extensive medical records ..note: I always take a letter with me that summarizes everything how I first got sick, the dx, the weight loss and what is happening now. Along with copies of tests I find it reallly helps cut through the ok so then what happened after that! He said that he wanted to do 2 tests 24 hour holter monitor and echo and that there was no need to repeat TTT.(thank goodness!!) He wants to try beta blockers again maybe in combination with proamitine ( have tried all sorts of bb and proamitine but never together) and that all though he has no magic pill he thinks he can help and says we need to slow that HR down. So we go back in 2 weeks. He was nice at least and we will see. At least he had heard of POTS, my cardiologist here says well I have only seen 1 other case.

[corina]

hi stacey,

i am very glad that you didn't have to have another ttt. although it won't kill you (i don't want to frighten people) it made me feel VERY bad afterwards!

i'm also glad that the doc was nice and will try to help you, you never know, you know .

b.t.w. i found out that sometimes meds that didn't help in the past help a second time i try them. i hope the combination of the bb's and proamitine will work out well for you!!!

good luck,

corina

[MomtoGiuliana]

Stacy--I so hope you can get relief with this combination of drugs. It seems for many of us a combination of bbs with something else that addresses bp is needed.

Katherine

[StaceyYount]

Thanks! I am hoping!

Yea Corina I think he figured after 3 TTT and all positive ( and made me feel terrible tooooo!) that there was no need thank goodness! :-)

We go back in 2 weeks and then he said he would suggest the combination. He said well you have had it this soo long 2 weeks more won't hurt and then we can get these tests done first! :-)

Thanks for the encouragement it means alot!

[StaceyYount]

:huh: :( :huh: :huh: :huh: Sorry for all the faces but I just came back from new cardio and I am sooooooooo frustrated and so the faces are helping. Jeez we go over there again and I get the echo after waiting 20 minutes..then put in room to see doctor 30mins later he comes in. AND SAYS so did that medicine help you and did you see Dr. Davis. And my husband and I look at each other and hubby says you said you wanted to wait to start meds until after the tests. And Dr then looks at chart and says but what did Dr. Davis suggest he is the electrophysiologist. And we we both said well we have not seen him yet we are here for test results. So then he looks at chart again ( he had not looked at before he came in can you tell) And then says ok we were discussing using a BB and proamitine together cause you have both problems and we need to address them both. And then he says Dr. Davis is our ELECTROPYSIOLOGIST and he wants to see you!!!!!!!! GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR that is why we drove 45 mins to this office. So he says ok we will start you on these meds and then in next 2 weeks come see Dr. Davis and then I will see in you in a month. We had to ask about results which he barely discussed oh yea your holter shower high hr your echo showed mvp and high hr. WELLL DUH and I know I am glad it did not show anything else but he could give me some numbers and at least seem like he had reviewed recently!!!! And then now we have to come back over to see the Electrophysiologist. I have all ready tried proamitine and it did not agree with me an neither did bbs. And yea it has been awhile and maybe now they will help but it just the same old thing well try this and we will see how you do. God I just want this not to be POTS not anything worse (cause my husband always what you want something worse ! grrrrrr) Anyway sorry but why do I feel like this is just the same old thing. I feel like I was trying to get a new and fresh approach and got the same thing. And even less cause I felt like he hardly thought about this and why the heck did we not see the electrophysiologist in the first place. Oooh and he said well you know you cant keep having pulse rates above 100 yours is even 120 and you know we have to slow that down. And I was like I am sitting down do you even know what how high it gets when I stand?? and sorry you all, just frustrated!!!!! grrrrrrrrr And then my helpful husband ( who usually is great) tells me not to get upset and to not get frustrated and I said well can't I vent and he says well the more upset you get the worse you feel and then I have to take care of you!!! arghhhhhh. Thanks for the support mukie! But he frustrated too I know but geez! And hey maybe they will work now but it is hard to try something again that you know made you worse last time. Wow am rambling just had to type to someone who understands this frustration. I should have known that doc was going do same thing when he said well I don't have a magic pill! And I know they don't but oooh this illness is just tooo much. I told my hubby half the problem is I don't want it to be this stupid illness! But it is and now I must accept that again but the fight gets tiring sometimes you know. Thanks for listening sorry if I rambled.

[cardiactec]

hey stacey, sorry to hear about your experience with the doc today. it is SO obvious when they dont review your chart ahead of time, i dont know why they think they can pull that crapola and not expect that we wont pick up on it. drives me nuts. so sorry it was such a tough day.

two questions, when you say the betas dont work for you, do you mean they cause you symptoms or they dont control your HR or make you feel worse? also, what are your HR's standing?

hope you have an easier time with your next appt and that someone actually REVIEWS your records FIRST before you see them instead of "wing it" on the spot. i feel your frustrations....

[StaceyYount]

Thanks! I knew you would understand! And the fact that we went over there to see the electrophysiologist and now we have to go back to see him..grrr..ok maybe not over frustration yet heres a few more faces lol :blink: :blink:

And yea you could totally tell he had not even looked at chart. How dumb is that to have to sit there and read in front of patient.

The BBs gave me horrible headaches some of them, some made me feel much worse and some made my bp dip way to low.And a many of them with the side effects did not really effect hr at all. We have tried sooo many! my Heart rates standing 165-177-190 is the highest i have taken it at but I guess it could go higher i just have to sit at that point :-). During the TTT it was 165 when they stopped test. 90 laying down. Now lying its 100-110 Sitting 120 -140 and then on up when standing. My bp is higher now so it may not be as bad. You know I would have really liked to know what my hr did during 24 holter monitor guess we will ask for copy of reports meant to do it today but we were there so long...

And I hated proamitine. I think I tried it at least twice. But again we will try it and hope.

Ok I really need to go close this computer now and rest! lol A good bollywood movie is in my future! ahhh happy smile