Postural Tachycardia

Hi,

I'm a 22 year old male and I need some advice. Suddenly on November 14, 2007, My heart rate spiked through the roof while showering, previous to that my heart rate was elevated for an hour or so. For the last year and a half I've had bouts with sporadic tachycardia and palpitations, I noticed it mostly after eating. The more I ate it seemed worse. Anyways getting back to this. When I even move around a bit (even lying down) my heart rate elevates rapidly and when I stand up it goes up to about 160+. I was in the trauma unit of my local hospital a few weeks ago as my heart rate would not go below 120 for about 2 hours. I am on 25mg Atenolol 2x/day right now for a total of 50mg, and it has helped but the symptoms breakthrough after anywhere from 2-8 hours. It varies. I'm also on 20mg of Paxil and have been for about 8 months and 2mg of Lorazepam (Ativan).

I have had about a dozen ECG's and echocardiagram a holter monitor and everything is fine on them.

I (like an idiot) stopped paxil abruptly about 2-3 months ago because I didn't want to be on it anymore, and I started getting bad palpitations. I went back on it and the palpitations settled down but came back after about a week or so, and then everything has seemed to go downhill after that.

Any ideas on what is causing this? Like I said when I wasn't on Atenolol when I would even move a little my heart would go up considerably, and if I tried to stand up and walk around, it went to 160+ beats. I get hypertension with it as well, but feel weak. It is a little better with the Atenolol though.

I'm just extremely worried and want to know if this will go away or what. I'm scared out of my mind as when there is no pills to at least help a bit, it completely disables me.

[sugarpea013]

It seems to me you have Inappropriate Sinus Tachycardia. Not trying to diagnose you, but it sounds very dead on. I will share my personal experience with this tomorrow when I have more time. In the mean time, you should maybe google it...

[captaincharisma]

What says to you that I have IST? is it dangerous? will it ever go away?

[captaincharisma]

I look forward to hearing your experience and am thankful you're willing to share it with me.

Anyone else have any thoughts?

[sugarpea013]

You should create a profile...it will allow us to send messages to eachother. I can send you more information through private messages because this public forum does not allow us to post links to websites.

Your symptoms are just classic IST. It is not dangerous, however very life altering for some. My cardiologist has seen cases where over time it goes away, but for most unfortunately it is here to stay.

[captaincharisma]

How do I create a profile? lol....So I'll have to live with this for the rest of my life where my heart rate goes through the roof from just moving and is pounding and it feels like I can't breath? I hope not :(

How are you doing with it? and how did you get diagnosed?

[sugarpea013]

I really gotta go sweets! I'm so sorry. Tomorrow is the last day of the semester and I have 2 finals to study for. I PROMISE I will fill you in on my story later. I'm sure your post will attract the attention of a couple others on this forum. There are 4 that I can think of that have IST. Of course remember I'm NOT diagnosing you, just saying it sounds all too familiar. Don't get too freaked out. I can teach you how to make it easier...if that's what you have.

Good night and rest well, you ARE okay.


xoxo

[sugarpea013]

I think you  need to click on "mymedhelp" up in the right corner.

I meant to say "I can't" send links over the public forum, I wrote " I can"

[Thinline]

Hey there, join the club, I have IST and POTS, sometimes difficult to seperate the two medically.  I had an AV Nodal Ablation to "cure" my IST.  This is when they put catheters into your heart and burn the dodgy electrical spot which is causing the tachy.  Ablations are commonly used to treat IST and mine worked for about 7 years, do remember that because I have no AV Node, I have a pacemaker, but this does not trouble me at all.

I started with all this stuff when I was 25 and I'm 36 now, so its not exactly a life ending thing, but it certainly does change your life very drastically and you will have to learn to accept that.  The best thing I ever did in my entire life is have that ablation and I would certainly do it again.  IST seems to go for younger people.

There are also medications which you can take, they vary in forms and they way in which they act on the body, and your cardio would probably start there and try a few meds out before going for anything more drastic like an ablation - even though the ablation is a safe and common procedure, all surgeries have risks.  Whichever way you go, the outcome is usually good so don't despair.  They ae making rapid advances in the type of technology used to treat this disorder.

POTS is also notoriously difficult to treat and I feel that cardios should work in tandem with Neurologists to get POTS under control.  Seems cardio's and neuro's don't work well together and their views are conflicting with this condition, so it might be a bit of an issue.  I know my cardio absolutely refuses to even hear the word Neuro.  POTS is diagnosed mainly through a tilt table test, so you will probably have to have one.  They strap you onto a bed lying flat and get base readings of pulse etc, then they tilt the table upright and see what happens with your pulse and BP.  I suspect that if your pulse goes up by 30bpm or more per minute it is a positive POTS diagnosis.

The effects of both POTS and IST are very challenging to deal with but you do learn to adapt.  Once you accept that you have an illness like this it makes you more able to deal with life in general. Some people get IST and it just goes away, maybe that will happen for you especially if it started right after stopping Paxil.  

My advice to you is to get as much information as possible.  See your cardio.  Find out your options so you can make infomed decisions, and try to understand the condition you have. Accept that your lifestyle will have to change somewhat.  And always remember that there are no stupid questions, so never be shy to ask, be it at your doc, here, or anyone elso who might be able to answer them.

I wish you well on this one, and hope that it just spontaneously goes away just like it arrived.

[captaincharisma]

OK Thanks, I look forward to you help me sugarpea013...I appreciate it!!

[captaincharisma]

Well, when I stand up, my heart rate goes above more than 30, probably about 50+ bpm.....It didn't start immediately after stopping the Paxil....I stopped the Paxil a few months ago, bad palpitations showed up after a week off it cold turkey, then my pharmacist said get back on it ASAP, so I did, and the palps went away but came back after about a week or so. This was about a month to a month and a half before this whole thing came about. But it looks like me stopping Paxil cold turkey started me down this terrible road.

I seen a cardiologist, he said everything was good with holter, echo, and ECG, but didn't know why I am having this problem and ordered a tilt table test. I have a tilt table test scheduled for next Thursday the 20th but am scared to get off Atenolol as not having pills sent me to the Trauma unit a few weeks back as they couldn't get my heart rate down below 120. Not sure how I'm going to do this.

[captaincharisma]

I just am really scared about the whole thing, about the possibility of having a condition that will progressively get worse over time when I can barely handle it now.

I don't even know what brought this whole situation on, I was feeling fine the day it happened (November 17 2007), then I had a bit of rapid heart beat, then it just went through the roof when I was in the shower.....I just can't understand it. I doubt it will just go away as it's now been a month and it's as bad as when it started. I'm a big wimp when it comes to things like this.

Thanks for all the help, and if anyone else has any comments, please feel free.

[Thinline]

Sure you are down about this IST thing, it would be very odd if you weren't.  I think you really need a plan of action so that you have a target to aim for.  Start with finding the right doctor and discussing your fears with him or her.  DO the tilt test, at least then they will have a better understanding of what is going on with you.  I had a tilt test when I had a resting pulse of 160bpm (that was my resting pulse before my ablation).  Whatever the results of the tilt are then you can move forward from there.

About the shower.  My main tachy trigger is showering.  I've asked about this and nobody can explain it to me.  Once or twice my husband has actually had to help me out of the shower and back into bed with my heart racing and then skipping beats and making me feel very faint.  Bathing is slightly better but I do love to shower so I try to do it slowly with not overly hot water and just enjoy it.  When I feel things starting with the tachy, I rinse and get out.  Works for me most of the time.

Another factor in this you really have to think about is that it is complicated and takes time.  Various tests will be done, different meds will be tried, you may spend and awful lot of time at the docs, and in the end you might still need to have an ablation.  I suggest that you accept that this is going to be a time-consuming and VERY frustrating time for you, but the more you stress about it, the worse you are going to feel.

You need to listen to your body, it is obviously trying to tell you something, so when you are tired and your rate is way up, slow things down.  Sit down, lie down, read a book, listen to some music, whatever it is that you enjoy.  Some day things are better than others so be prepared for good days and bad days, and just keep in mind that while this thing can be debilitating it isn't fatal.  Accept that you are in for a lifestyle change and go with it - you will be happier then.

As far as being a wimp goes, I don't really think that is a good way to look at things.  A bad and scary thing has happened.  Over time you will accept it and live with it.  You will take the good days and make them great days.  You will get the bad days and they will make you grumpy, but really being a wimp does not seem like a good way to tackle this thing.  In my opinion, understanding the condition and adapting your lifestyle are the way to go.  Why degrade yourself by saying "I'm a wimp".

Feeling sorry for yourself is self-destructive and will end up making you depressed.  Empower yourself with knowledge.  Read up on the Intenet, join forums, speak to others who have the same condition.  This sickness sucks but it is not the end of the world, in some ways, it teaches you to take advantage of the good days.  I'd love to sit with you and have a cup of coffee just so you can see that I'm as normal a person as the one sitting at the next table.  I've just really become a much slower version of the old me, but I'm still me and you will still be you.

[captaincharisma]

Thank you very much for your post, it made me feel better. I admire your courage, determination and just your awesome general attitude.

You spoke about an ablation, what are they ablating? Also, I don't really want to look things up on the internet about it anymore, it depresses me and makes me feel anxious. Some places I read it won't go away, others I read in most patients it does. I don't know what to believe.

I'm just upset I won't be able to do the things I was able to do before. Although I am out of shape, I liked going to the gym and lifting weights. I also liked to play golf, hockey etc....now I won't be able to do these things, and it just makes me feel terrible.

[hava]

You will be able to do the things you like.It will go away.Do this exercise everyday and make your comments here after about 14 days or earlier if you feel improvement.
Anulom Vilom - Deep Breath-in through left nostril keeping right nostril closed
then - Breath-out through right nostril keeping left nostril closed
then -Deep Breath-in through right nostril keeping left nostril closed
then - Breath-out through left nostril keeping right nostril closed
and repeat this cycle for upto 30  minutes twice a day(maximum 60 min/day).

[captaincharisma]

Thanks so much for your reply, I sent you a PM