continued tachycardia

[SB]

This is kind of long, so I'm apologizing up front.  I am a healthy 34 year old female who, approximately 15 months ago, had a very long (>24 hour) episode of orthostatic hypotension with associated tachycardia (NEVER had this before).  I received IV fluid hydration and the diagnosis of dehydration was given.  I continued to have problems with sinus tachycardia, both with and without hypotension (all autonomic testing, labs, and echos were normal). During my first EP study I was told that I had PSVT (tachycrdia triggered with pacing wires and again with meds).  As I continued to have significant tachycardia on various beta and calcium channel blockers (rates into the 170s with and without lightheadedness)I was given RFA.  At the time of the first RFA it was determined that the problem might be IST, as it was the sinus node where the problem was found.  Three RFA lesions were administerd, and as early as the next morning I was again having sinus tachycardia (while monitored in the hospital).  Several more beta blockers, sotalot, felccainide, etc. were tried with little success.  Over the summer I was seen at Northwestern in Chicago and at Cleveland Clinic at which times I was diagnosed with IST.  At Cleveland I received an ablation in which 30 lesions were administered.  I still have what I feel is tachycardia (rates into the 140s) - NEVER any other symptoms, except lightheaded at times.  No history of anxiety disorder, endocrine disorder, etc.  The only other medical issue is an undiagnosed neurological disorder (possible MS - this is why it was first thought to be an autonomic problem, but this has been ruled out by several physicians). Accroding to the Cleveland MD, the post-ablation event monitor showed I was moving around - I called in 5 recordings. I received feedback on one after 3 phone calls.  The MD said that  people with IST are very sensitive to their heart rates.  This is probably true. However, a heart rate in the 130s from walking in your house is not normal (I also wake up in the middle of the night at times with tachycardia, or in the morning - it is NOT activity related).   I am back with my original cardiologist in Chicago who put me on Amiodorone and Atenolol to see if this can be controlled.  I hate taking the medication as it gives me headaches and makes me tired.  I'm also looking at getting pregant in the next few years, and do not want to be on medicaiton.  I am quite miserable with this condition as it comes and goes as is pleases - I cannot trigger it nor stop it.  Episodes range from 20 minutes to over 24 hours.  I work in healthcare and it is very difficult caring for patients feeling lightheaded with your heart racing (the tachycardia has been documented on holter and event monitors, in MD office, etc.)  My EP MD here states that if this is truly making me miserable they can ablate the AV node and place a pacemaker.  (He thinks this is drastic because technology should be better in 5 years).  Five years is a long way away, but I don't want to be over aggressive.  How does one know what the right thing is??  (Although I love this forum, I don't think I would consider returning to the Cleveland MD because the post-ablation follow-up was not great, and I feel that my concerns were minimized).  Any, any advice would be appreciated! ALSO, could you please talk a little about amiodorone - side effects, normal dosages for IST, etc.    Thanks so much!

[Cleveland Clinic, MD]

Dear SB,
I'm sorry that you didn't get as much post-ablation follow-up as you needed here in Cleveland.  I'm not sure of why your calls went unanswered but can assure you that if something dangerous or unusual had shown up you would have been contacted immediately.  As far as the next step this is not an easy answer.  You are already on the "big gun" antiarrhythmic - amiodarone.  I would question somewhat the use of this drug as it can have very serious side effects including lung, thyroid and liver toxicity.  In addition it can cause corneal and skin changes.  

I guess the options at this point are 1) medication 2) Another ablation attempt 3) ablation of the AV node with pacemaker 4) observation.  You will have to decide with your doctor which option is the best for you.  Best wishes to you.

[jan]

Dear SB,
I just wanted to respond about the comment the dr. made about people with IST being very sensitive to their heart rate. I think that is a very stupid remark. Just because your sensitive (or not) doesn't put you in tachycardia and you are absolutely right, just walking around shouldn't put you at 130! I have IST (and  NCS) and it wasn't until my neuro. was running out of tests that he decided on a couple of heart tests. One being a holter monitor. I had 4 1/2 hrs. of tachycardia, one episode as high as 170, and I never knew it. Just recently I had an episode of near syncope, I got pretty sick. When I got in to bed I checked my pulse to see how low it got (because I thought it was due to the NCS), it was 138. Yet, I didn't feel my heart racing. I have had a number of break through episodes that I am aware of, I wonder how many I've been unaware of. My EP has been working with me for 1 1/2 yrs. adjusting and readjusting my meds. I am thankful for the EP I have found. I hope that I will never need an ablation! I have yet to hear a success story! I hope things begin to look up for you!
Sincerely,
jan

[Dr. Erik]

Dear SB:

I agree with you EP. Although you are very uncomfortable right now, you shouldn't rush to have the ablation and placement of the pacemaker. You are young and healthy. Your heart can handle the occasionally high heart rates with probably no damage. You have a long life ahead of you and you should think of your future and not just now. I'm sure this problem will get better either on it's own or with new technology as your doctor states. You might want to try a drug like Paxil, Prozac, Zoloft. They can help you deal with the high pulse rate and help slow the heart rate. I take a beta blocker and Paxil and it slows my heart rate down into the 50's and 40's. Without the meds my pulse is in the 100-110 range.

[C.N.]

S.B.
    I just had to respond to you.  My story is exactly the same as yours, including the nuerological stuff- maybe M.S., but doubtful, etc.
    
The only difference was when they did my ablation in Boston for I.S.T. I ended up needing a pacemaker.  At first they thought the ablation was successful my rates had gone done, but after going home my heart dropped dramitically until 3 weeks later I was rushed into the hospital because my rate was in the teens and twenties.  

So now, at age 32 I have a pacemaker.  At first I thought it is so much better than going through that constant tachycardia.  Now I do question my decision.  I guess if I had to do it over again I would because  the tachycardia was constant every day and I couldn't live like that.  But now I have Atrial fibrillation for some reason, rather constant and also disabling and tachycardia that is actually caused by the pacemaker.  Now I'm not saying this would happen to you..  But it is a big consideration, because you just don't know.  Having the pacemaker in and of itself is really nothing, I don't really notice it and I don't let it stop me from doing things.  It's mostly the arrythmias that are the problem.

I know this has probobly done nothing to ease your mind, or answer questions, but I guess it's just another point of view.  I wish you the very best of luck.  Contact me privately if you wish.  My email is tim-***@****

[Robin]

Dear Jan,
  I noticed your comment about never hearing a success story about ablations. I have been all over this net and have done alot of research. I am also a member of a heart failure support group and have found many, many success stories out there. I know of 2 woman personally who's lives have been greatly improved since they have had theirs. One of them had to have a pacemaker implanted and she has never regreted it. She says her quality of life now compared to before is better by 10 fold. I have also read some that have not gone to well for one reason or another. Nothing is 100%. All invasive procedures should be thought over with great care. Also the success rates fall between 80-90% ranges, depending on what area of the heart it is.

To SB, I am so sorry to hear that your health has not improved and that you have had so many problems. I wish you well and truely hope that you will improve no matter what you decide to do. I for one dont want additional drugs at my age (36) and am going for the EP study soon. At this point i would even welcome a pacer or ICD if that is what is going help me. I have had these attcks for 10 years and I now have damaged muscle in my heart and cardiomyopathy. Something is destroying my heart muscle and it's not age. God bless you all who visit this site, may health and peace of mind be yours.

[jan]

Dear Robin,
Thanks for the  encouragement. Were they success stories that were from patients with IST? I've only read the posts on this forum and they are sad stories about lack of success and further complications and discomfort. I don't know anywhere else to look. My EP said it will only be done as a last resort, which I think is proper. Also, I would hope that if it had to be done it would just be a sinus node modification.
I am sorry to hear of your problems. What attacks are you talking about? IST? Don't they know what is destroying your heart muscle? You are young, but I am, too (at least I think so -43 yrs. old).
Sincerely,
jan

[heartfull]

Sorry for the delay in replying to your post. I must admit that i do not know what IST is . Would you please give me an explaination so that i can look into it further. Thanks.
I had my EP study/alation this past monday. I am pleased to say that so far it has been a success. I was having 20K+ pvc's couplet, triplets, and runs of ventricular tach on a good day. So far, i have not had one jump, thump or bump and my only symptom is tachycardia. I have suffered with this for years and have been on beta blockers to control it. We are trying a 2 week trial to see if it will go away. Today was waorse than yesterday with a sleeping pulse running around 100, resting 120, hard to take a pulse and walk around but i know i cant walk and talk at the same time so it must be high. After 30 mins of being up and going, it's time for a nap. Maybe recovery for me will take longer and probably will go back on b-blockers but it is better than antiarrythmic drugs. No, they do dont know what is causing the damage to my heart muscle and at 36 with CHF an IDCM it is disterbing. There is a suspision that i may have vasospasms but the testing is too dangerous. My EKG's report anterior ischemia. My arteries are wide open and clear so my docs are a bit baffeled. I am praying, hoping and keeping my fingers crossed that the little bugger that was ablated is what was causing my attacks. I didnt expereience one while on the monitor nor during the study so i will just have to wait and see. I will continue to wear the monitor for another month or 2. I know my body pretty good and i am almost sure that those attacks are causing the damage.
  Thank for your concern and tell me as soon as possible about IST. I came to the conclusion that it meant idiopathic sustained tachycardia.????  Good luck to all and God bless

[jan]

I am glad your ablation seems to be a success. I wish you well.
IST is inappropriate sinus tachycardia. My heart just starts racing for no apparent reason. One of the times it was caught I was at the dr.'s getting an ekg and feeling very tired, my heart rate was 170. My ep says it happens too frequently and can cause CHF or cardiomegaly (and is probably triggering my neurocardiogenic syncope), so he is treating it with atenolol and verapamil.

[heartfull]

Hi Jan,
  I dont know how I missed that one  :)  I have sinus tachycardia that is controled with b-blockers, somewhat. On the B-blockers mine is not concidered inappropiate but i dont know what the outcome will be being off the meds. I really like being off the meds but the tachycardia is wearing me out. I clocked it close to 160 today while sorting laundry. It wasnt hard work, & I was not running doing it. I can sympathise with you about the tach. Ventricular tach is really scary too and if i never have another episode I will be very greatful. I  have read about IST and all that i have read leads to ablation and pace maker. I will try to get some links for you to go to read on it. The american heart association is a good place to go for good info. My heart support group page also has alot of good links in it. try going to www.jonsplace.org. Good luck and God bless......
  Can you believe this election MESS?!

[jan]

What kind of sinus tachycardia do you have? I would think if you had it just folding laundry that it would be IST, but I guess it could be re-entry.  Or do you think because you are still recovering from the ablation that is what is causing it?
What do you mean by "all that i have read leads to ablation and pace maker"? I know that the posts I have read (there aren't many) meds have failed or they didn't want to take meds and they ended up with an ablation. Is that what you are referring to? Myself, I am going to stick with meds unless my ep strongly suggests otherwise.

[Marg]

Looks like you folks have not yet found the website...  implantable.  Just type it in, go to the patient forum( and look around the rest of the site) and get lots of info and LOTS of support from both pacemaker recipients and defibrillator wearers.  It is a godsend.