Jump to content

New Here Dr Thiks I Have Pots Im Not So Sure


my4turtles
 Share

Recommended Posts

I?m not sure if im in the right place , im at a loss and just need some help and hope you can relate. I started having heart problems now about 7 years ago when I notice my heart racing. Long story short after wearing the 72 hr heart monitor the DR found out my heart rate went up to almost 300 bpm.

I went to one Heart Dr who told me it was a problem with a value and gave my blood thinners, it never fixed it. It just got worse. Skip some months back to the Family Dr as im feeling bad again and she wants to send me to another Heart specialist who wants to do a Heart ablation and tells me it will fix everything as this is common in a lady my age ( young 30?s). I was told that right after surgery I will be 100% . I went in for the ablation and not even 72 hr later my heart is still racing and im feeling extra beats and fluttering, which I was also feeling before ( sorry forgot the add that).

I left it a couple months thinking that maybe my body just needs to adjust. Well I started to notice that im tired all the time now and if I climb stairs or do light activity as simple as vacuum im puffed out and my heart is going like a ran a 10k run. I went back to the heart Dr who did my ablation and he didn?t really seem to care and said that I should try to relax!.

Well tings went really bad from there, I started getting really dizzy and passing out. My husband has come home and found me passed out or has found me on my knees as im bout to pass out. Sometimes I know right before and other times I had no idea. But I would know right before my heart would race and also beat hard. . I have had EKG?s done that show irregular heart beats and a high heart rate . If I walk a fast pace on a tread mill within say 30 sec?s my heart will be over 180 and im only 35. My husband just got a stationary bike and I was trying to use it the other night very slow and within 1 min?s my heart was at 198 so I did stop straights away and I was very dizzy..

My current heart Dr says he thinks I have Potts, I have a internal heart monitor implanted at the moment . I get very bad chest pains, that do go down my left arm. I get pain in my jaw also at times, at times I lay in bed and cant sleep as its so bad and I wonder if im going to wake up. I?m very worried about this. My DR seems very good but on the other hard , I worry am I putting to much trust in him??

I just got a Polar watch so that I can monitor my heart more, in hopes to keep the passing out limited. I just fill so helpless as im so tired all the times some days are worse than others and I cant do the most simple thins it seems. I used to love going out and shopping these days just a simple store trip makes me sooo tired. On my last visit the DR said my monitor picked up that while sleeping my heart went up to 198 bpm

I called me DR 2 weeks ago to tell him I cant handle the pain anymore and that im getting dizzy and out off breath really bad. He tells me.. Do you think it might be stomach acid or arthritis ? Uhhh that got me so mad when he has seen how high my heart gets.

Does anyone have any advice for me, I done know any one who has this?

Link to comment
Share on other sites

I?m not sure if im in the right place , im at a loss and just need some help and hope you can relate. I started having heart problems now about 7 years ago when I notice my heart racing. Long story short after wearing the 72 hr heart monitor the DR found out my heart rate went up to almost 300 bpm.

I went to one Heart Dr who told me it was a problem with a value and gave my blood thinners, it never fixed it. It just got worse. Skip some months back to the Family Dr as im feeling bad again and she wants to send me to another Heart specialist who wants to do a Heart ablation and tells me it will fix everything as this is common in a lady my age ( young 30?s). I was told that right after surgery I will be 100% . I went in for the ablation and not even 72 hr later my heart is still racing and im feeling extra beats and fluttering, which I was also feeling before ( sorry forgot the add that).

I left it a couple months thinking that maybe my body just needs to adjust. Well I started to notice that im tired all the time now and if I climb stairs or do light activity as simple as vacuum im puffed out and my heart is going like a ran a 10k run. I went back to the heart Dr who did my ablation and he didn?t really seem to care and said that I should try to relax!.

Well tings went really bad from there, I started getting really dizzy and passing out. My husband has come home and found me passed out or has found me on my knees as im bout to pass out. Sometimes I know right before and other times I had no idea. But I would know right before my heart would race and also beat hard. . I have had EKG?s done that show irregular heart beats and a high heart rate . If I walk a fast pace on a tread mill within say 30 sec?s my heart will be over 180 and im only 35. My husband just got a stationary bike and I was trying to use it the other night very slow and within 1 min?s my heart was at 198 so I did stop straights away and I was very dizzy..

My current heart Dr says he thinks I have Potts, I have a internal heart monitor implanted at the moment . I get very bad chest pains, that do go down my left arm. I get pain in my jaw also at times, at times I lay in bed and cant sleep as its so bad and I wonder if im going to wake up. I?m very worried about this. My DR seems very good but on the other hard , I worry am I putting to much trust in him??

I just got a Polar watch so that I can monitor my heart more, in hopes to keep the passing out limited. I just fill so helpless as im so tired all the times some days are worse than others and I cant do the most simple thins it seems. I used to love going out and shopping these days just a simple store trip makes me sooo tired. On my last visit the DR said my monitor picked up that while sleeping my heart went up to 198 bpm

I called me DR 2 weeks ago to tell him I cant handle the pain anymore and that im getting dizzy and out off breath really bad. He tells me.. Do you think it might be stomach acid or arthritis ? Uhhh that got me so mad when he has seen how high my heart gets.

Does anyone have any advice for me, I done know any one who has this?

Wow sounds like you've gone through a lot , especially for someone so young. First off I'd see another doctor. If it were me I would want some other opinions as he doesn't seem to be helping you , or hearing you.

Is your current doc the one that did the Heart ablation? They don't seem to be sure if it's a heart problem or not..Cause POTS isn't really a heart condition, but these guys are doing surgery on your heart! He told you he think you have POTS..but What does he intend to do about that?

Do you have any blood pressure issues? Or low salt levels? Exactly what tests have they done?

What state are you in? maybe someone here has a doctor they trust that you can see. I am in NJ and could point you to the doctor who diagnosed me if you're here. He's a CFS specialist but he also knows a lot about POTS.

Susan

Link to comment
Share on other sites

Yes, it does sound like you need another doctor. Usually with POTS, most of us are told our hearts are in good shape. Its the autonomic nervous system that misfires and causes our hearts to beat too fast and cause both low and high blood pressure ((BP). The test done for that is called a tilt table test. It will show up when you go from a lying position to a standing position.

Honey, you are worn out because you are on a treadmill ALLLL the time with your heart beating so fast. Anyone would be. You need to get on some meds to get it to slow down. Usually beta blockers. I agree with friday7, you need to search out another doctor. It does sound like POTS. There are two kinds of POTS ----not the Potts form. (That kind is a heart disorder associated with TB.) This kind is POTS associated with the autonomic nervous system.

Which kind did he mean?

Link to comment
Share on other sites

Thank you for your responses it helps so much, I did have a ultrasound done about 5 years ago and was told I had MVP. This new Dr did a Ultrasound and said I don?t have MVP ! and that my heart looks great !!. He did do the tilt Table test and every thing was great and he said my blood pressure was great. In fact I have never had a Dr tell me that there was something wrong with it ever. This current heart Dr and the past one did have me on a couple different Beta Blockers but I was still having problems. I had no clue there are 2 kinds of Pots, he never told me so I have no idea, I do know he did say it had to do with blood pressure as he kept saying I had to watch that and make sure I drink a lot and watch my salt in take. But once again I have never had a problem with my blood pressure. If any one can point me in the Direction of a specialist that would be great in in Southern California.

Link to comment
Share on other sites

For a long time, every doctor I went to said my blood pressure was completely fine. It took the tilt table test to show the problem. When I'm sitting in that chair or laying on the table, it's fine, but the transitions get me. You should get a tilt table test! :(

Link to comment
Share on other sites

Hi my4turtles, and welcome.

While your heart rate accelerating out of control from exercise or climbing stairs sounds like it could be POTS, hitting 198bpm while sleeping does not. While there are many different symptoms involved, it is primarily defined by a rise of 30bpm or more within ten minutes of standing up from a supine position.

One other possibility is Pheochromocytoma, which mimics many POTS symptoms, but not the postural tachycardia. You can learn more about it by searching the forum for "pheo".

You can also find a POTS specialist in your area in dinet's physicians list on their home page. Here's the link:

http://www.dinet.org/physicians.htm

Document your heart rates, standing up and lying down, to give yourself a better idea.

Good luck

Link to comment
Share on other sites

While your heart rate accelerating out of control from exercise or climbing stairs sounds like it could be POTS, hitting 198bpm while sleeping does not.

However, things are different for everyone! My heart rate gets really fast while I sleep too, but I have POTS... I hope they figure things out for you soon!

Link to comment
Share on other sites

"While your heart rate accelerating out of control from exercise or climbing stairs sounds like it could be POTS, hitting 198bpm while sleeping does not. While there are many different symptoms involved, it is primarily defined by a rise of 30bpm or more within ten minutes of standing up from a supine position.

One other possibility is Pheochromocytoma, which mimics many POTS symptoms, but not the postural tachycardia. You can learn more about it by searching the forum for "pheo"."

Hi ... sorry you are not well but I wanted to let you know that I have hyper pots and my heart rate did this at night before I was on meds. I tested positive for Pheo with 24 hr urine tests 4 times... was sent to Johns Hopkins and then NIH and I do not have a pheo... turning over in bed set things off for me... I thought I had breathing problems! It sounds to me as though you might have hyper POTS. If you get tested for Pheo make sure that they go by a supine plasma (blood) test. I am living proof that a 24 hr urine is only a screen test! best wishes to you

Link to comment
Share on other sites

Actually I think she said her hr hit 198 after using a stationary bike for 1 min, not while she was sleeping. That being said, I also have hyper POTs and my hr and bp would soar in the middle of the night. Actually, I have terrible symptoms when I am lying down. It was one of the main reasons I didn't feel that I had POTs before I was diagnosed.

As far as the stationary bike, I had a stress test on Thurs using a stationary bike. When there was no resistence my heart rate increased normally, but as soon as the resistance was increased my heart rate shot up to 198 bpm. I agree with everyone else that you need to find a dr familiar with POTs to get a diagnosis. Even if you have had a ttt, get another one with someone who has experience. I wish you luck and hope you find some answers and feel better soon.

Link to comment
Share on other sites

As nmorgan said I also have terrible symptoms whilst laying and cannot get to sleep. This includes muscle tremors, high heart rate and chest pain. I have had two tilt table tests and both have confirmed POTS. I think I have the hyper type but have not been told that by Dr just by reading everyones posts - mine seems like hyperadrenergic.

My BP had also always been ok.

Good luck, I really hope you get some answers soon. Never give up! :(

Link to comment
Share on other sites

Thank you everyone Its nice to talk to everyone who understand.. I did have the table tilt test and he said I was perfect the whole time. I need to clarify My heart rate gets high while both sleeping and both exercise. I have had it even go over 200 while asleep. Yesterday my husband was doing so yard work so I wanted to help, I fill so useless at times. So I thought I would move the small brink that were in the shade. After moving maybe 5 and mind you im not moving im just throwing them my heart just start racing so quick and I cant breath that good. I guess the best way to describe it is you cant take a full breath in. Also I was feeling the extra beats starting to kick in, I just hate that feeling.

Link to comment
Share on other sites

Welcome to the group my4turtles.

I'm hoping that your symptoms do get better with time.

Since you are passing out I would encourage you to keep pursuing help.

Also besides the heart rate monitor I would really encourage you to get a blood pressure monitor and take it when you are feeling bad or having the presyncope.

Your bp's may be bottoming out on you and this would be good info to be able to take to your doctors office with you.

It has taken me a year post ablation for my heart rates to come down and I don't think I have any SVT's any more My presyncope episodes have also gotten fewer and farther apart so I'm hoping that this happens for you too.

Take it easy and don't push it. It's good to still get up and walk and do what you can but I would avoid strenuous things that you know are going to push you over the limit until you are feeling a bit better.

Link to comment
Share on other sites

Thank you everyone Its nice to talk to everyone who understand.. I did have the table tilt test and he said I was perfect the whole time. I need to clarify My heart rate gets high while both sleeping and both exercise. I have had it even go over 200 while asleep. Yesterday my husband was doing so yard work so I wanted to help, I fill so useless at times. So I thought I would move the small brink that were in the shade. After moving maybe 5 and mind you im not moving im just throwing them my heart just start racing so quick and I cant breath that good. I guess the best way to describe it is you cant take a full breath in. Also I was feeling the extra beats starting to kick in, I just hate that feeling.

Have you been checked for atrial fibrillation? What type of heart rhythm is happening when your HR is that high? Sinus tachycardia? SVT? You said you had a holter monitor and it caught 300HR's. This should have been figured out then. I'd get copies of all of the reports from every single test you've ever had done, so you can see for yourself what is going on. Doctors don't always relay information to us patients, so we have to be our own at times. It stinks, but it's true.

With a normal tilt test, then you don't have POTS. Something else is going on and I hope you can find a doctor who can give you some answers.

Link to comment
Share on other sites

I did get a Bp montor for at home so i will start to cheek that. I have a Heart monitor implanted and when ever i got to the Dr for him to download it you can see where my heart has gone really fast and he will say at times ohh that's nothing its picking up back ground sounds or music. Im thinking hold on half the time my heart is running like crazy so all those cant be music. What does he think im doing hanging out in a club!! I go back and see him in 2 weeks and my husband has had it with him , i think this dr just has no idea and is just pulling idea's out his butt

Link to comment
Share on other sites

Sometime the high heart rates are flukey.

Like I would just be going along at work and have a blip to 190 for a couple seconds and then go back down. It was so sudden I didn't believe it myself and I was basically without symptoms-may have felt a little nervous-that's it.

Does the heart beating fast feel like butterflies in your chest?

That is what mine felt like with the SVT's. I don't think I actually was going into a-fibb but they were able to trigger me into a-fibb on the table by giving me adrenaline.

They said this is what happened to me at home and I think they were able to stop the SVT's by ablating that pathway in the heart.

I only have sinus tach now and it's still not fun but it's not as scary as the SVT's.

My heart rates have also come down now so I don't know if that is just my POTS stabilizing or effect from the cardiac ablation.

I will say I got a little bit worse before getting better right after the ablation.

How long ago did you have yours?

It takes the heart 3 months to heal after the ablation and it's normal to go into afibb after and have some funny sensations in the heart.

I had a lot of funny feelings in the heart that I didn't have prior to the ablation just after-but it all went away.

Some people are ready to go right after and able to just go back to a normal life-I really wasn't.

I had a lot of periods where I just had to lay down and had a really bad wave that went through that felt really bad and then I'd recover fully and feel like I could get up and finish the day.

That was the weird part to me. How can you feel like death one moment-I hate to even say the word and then 15 minutes feel perfectly fine???

Weird.

Also someone hearing my history at work an older man who's daughter is a cardiologist says he has a-fibb but encouraged me that he's lived with this since he was in his 20's and only has episodes maybe once a year-some people including him go to the hospital to get converted when they have episodes every time. (I can't imagine having to live with that)

But he said some people with a-fibb actually pass out with it.

Link to comment
Share on other sites

Hi Lieze

My Ablation was about 2 ? years ago now, and I would say within days after I was still feeling the same. I do get the butterfly feeling you talking about at times but its more when I get the extra beats. When im getting the high heart rates it just fills really fast some times it can beat really hard and I have trouble breathing. I have also noticed that at times and I don?t know if this has anything to do with it or if it?s a coincidence but I couth after also but not every time. In fact last night I woke up 3 times coughing really hard and was not able to get my breath at all?very scary..

Link to comment
Share on other sites

Heart rates that high are usually the result of an arrythmia .. Sounds like A-fib to me it's very very common from what I have read and easily treatable once it's caught. Heart rates that high are usually from A-fib ... I would look into getting a second opinion from an electrophysoligist they specialize in Arrythmia's and the electrical conduction of the heart. A-fib comes and goes and can resolve itself during an attack on it's own or sometimes medication is needed to restore a normal heart rhythm. If you wore an event or holter monitor and showed symptoms it would have picked it up and the doctors can tell where the fast rhythm is originating from in the heart. They should be able to tell you based on the ekg recording what your heart was doing at the time it was going 300bpm. If they can't pick on anything with the recorder you could have an EP study done where they can try and provoke and arrythmia during the test.

Also have you ever had a sleep study done? You may want to have one if your having tachycardia during sleep.

Link to comment
Share on other sites

Hi Lieze

My Ablation was about 2 ? years ago now, and I would say within days after I was still feeling the same. I do get the butterfly feeling you talking about at times but its more when I get the extra beats. When im getting the high heart rates it just fills really fast some times it can beat really hard and I have trouble breathing. I have also noticed that at times and I don?t know if this has anything to do with it or if it?s a coincidence but I couth after also but not every time. In fact last night I woke up 3 times coughing really hard and was not able to get my breath at all?very scary..

My PVCs feel like that. Like my heart is beating really hard and the breath is being knocked out of my chest. I take a really deep breaths and cough to reset my heart rhythm. That usually helps mine.

I would ask for the actual test for the ttt. I know I have read on this forum that someone had one done and the dr told them they were negative for POTs, when in fact they did have POTs, the dr just didn't know what he was doing. I would also see if the dr will put you on a holter monitor to find out what was going on. Actually I would just find another dr altogether and get a 2nd opinion.

Link to comment
Share on other sites

Hi Lieze

My Ablation was about 2 ? years ago now, and I would say within days after I was still feeling the same. I do get the butterfly feeling you talking about at times but its more when I get the extra beats. When im getting the high heart rates it just fills really fast some times it can beat really hard and I have trouble breathing. I have also noticed that at times and I don?t know if this has anything to do with it or if it?s a coincidence but I couth after also but not every time. In fact last night I woke up 3 times coughing really hard and was not able to get my breath at all?very scary..

I was reading this page today http://en.wikipedia.org/wiki/Dysautonomia

and this line struck me and I thought of you. " In some cases, a procedure called "cardiac ablation" can be performed to stop the heart symptoms completely. It is not recommended in POTS patients, and can in fact worsen tachycardia."

Is this what happened to you? Do you feel it is worsened after the operation?

I would ask for the actual test for the ttt. I know I have read on this forum that someone had one done and the dr told them they were negative for POTs, when in fact they did have POTs, the dr just didn't know what he was doing. I would also see if the dr will put you on a holter monitor to find out what was going on. Actually I would just find another dr altogether and get a 2nd opinion.

This is really the problem. I have gone to docs that had never heard of POTS. Then I'd explain it to them and they'd think it was just that I had trouble fainting if i got up to fast. I think a lot of doctors really don't really know a lot about POTS unfortunately.:( They call it rare..I dont' think it's that rare either. If doctors never heard of POTs or know little about it, how are they going to diagnose it?

I'd definitely try that list of doctors someone posted here..Unfortunately I'm not in your state but there might be someone on that list you can see in your area.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...