hello, everyone. i'm posting because i'm exhausted with this and i don't want to give up, but i'm fixing to. last year i was diagnosed with sinus tach (since thats all my doctor found on my 3 weeks monitor). my symptoms lead me to believe i have some kind of reentry tach because it starts and stops suddenly with a huge slam to my chest. i started nadolol last may and just last week, my doctor switched me to zebeta since nadolol failed to work months before my appointment. at the appointment, my dr says basically all i can do is take meds until one works because i have st and that is not curable. he will not do an ep study because st is not curable. i tell him 'isnt that why dr's do an ep study? to find the rhythm problem and hopefully then cure it? (being as me and 2 dr's i've seen over the past couple of weeks, thanks to emergency scare, all seem to think i do have avnrt) he then says no, he can fire off any arrhythmia in anyone and he cant do anything more without catching it on ekg. at this point i'm crying and begging that we do SOMETHING else because my body doesn not handle drug therapy very well.
i am very frustrated at this point. i had to give up coffee, tea, alcohol (in any amount), walking alone (if it starts up i'll be stuck wherever im at, not being able to move for a while), shopping for longer than an hour, driving (almost completely), sitting in the heat for too long, any shock to the system (scare, ice cold water..or weather, etc), running outside with my kids, sex (9 out of 10 it sets me off and takes a long time to finish), ....basically, it's stripped the person that i am apart, bit by bit and it's taking me over. at this point i don't care what i have to go through, as long as i can say we tried everything. i am very symptomatic. my heart episodes leave me dizzy, weak, and unable to do much of anything. there has got to be more to life for me than this. oh also, he says avnrt patients always have episodes that last for hours, and since mine varies from seconds/minutes/hours it can't be avnrt. somebody please tell me this isn't it. i just want hope. not more medication. why is my dr leaving me alone?
oh wow I'm so sorry this is happening, is there any way you can go to one of the major clinics like Cleveland, Mayo or Vanderbilt?
I can attest that what may or may not show on simple tests might really be something else when they go in with the EP study. I would get a 2nd or 3rd opinion and find another EP or cardiologist willing to help cure you, not just treat symptoms.
I went through 3 EP's and 5 or 6 cardiologists before I finally found a great cardiologist who is digging deeper into my files to try to find what's wrong and get me some help and referred me to Vanderbilt University.
keep searching until you find one that will help you and figure out what's going on
Hi...I really feel for you. I went to Dr. Andre Natale at Texas Cardiovascular in Austin. He is supposed to be the best and knows everything about the different arrhythmias. It wouldn't hurt to check with his office to see what your options are going forward. Good luck to you....don't give up. You have a long wonderful life worth living ahead of you. I will be praying for you. Be proactive and seek out someone who will help you.
so im not insane? this can be found in an ep study?!?! because i know my dr cares for me, but i cant take it anymore.....i am 24 years old and cannot keep up with my babies. i just feel like he CANT give up on me yet...and his reasonings made no sense to me. he is my first ep dr after seeing 6 cardiologists who all thought i was too young for any problem. and yes i know better than that.
I'll tell you what happened with me - I've suffered arrhythmia's and fainting since I was 9, I've complained to my dr's off & on over the years and been told it's this or that - anxiety, stress, overworking etc. Finally at the age of 42 a doctor believed me...and it almost cost me my life; but I'm a very rare case and what happened to me is not the "normal" thing that happens.
I broke my foot in June 2009 right before father's day and it didn't heal and when I fell I hit my back on the door jam so I was hurting from the fall. I didn't want to drive far back to my primary where we lived in 2007, so I called the clinic and found they had a satellite office less than 10 min from me. Luckily I went to the new primary - he heard some problems in my valves and very frequent pvc's.
He literally scared the death out me - telling me I needed a valve replacement and looked on my records from the other office. This very large clinic in central FL has satellite offices all connected so he could read my previous complaints since I stayed with the clinic...He went over my history and complaints and told me he couldn't believe from my EKG in 2007 that the dr let me leave his office.
I went to a cardiologist & EP he recommended and they both agreed I needed an ablation to try and get rid of the roughly 50,000 pvc's I was having, vt runs...they never expected to find that my VT and pvc's were malignant or that I had anything else wrong. He found I had polymorphic vt, but the only thing close in testing prior was I had multifocal pvc's and problems during my treadmill stress test they couldn't explain.
age has nothing to do with it...if you have problems you have problems - on my ICD support forum there's quite a few young people who have problems and most of us there have some types of arrhythmia's not just heart problems related to CAD.
Here's a link from our Dysautonmia forum but it has the major clinics info on it: http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196 I do know Cleveland clinic has a financial assistance program but I don't know about Mayo or Vanderbilt just in case you may need them with the added expenses of a large clinic testing, travel etc.
oh lisa i am so glad you shared. it may sound horrible but i almost WANT them to find something worth fixing just so that i can be finished with this one day...i cant believe you'd gone so long without being properly diagnosed with something like that. i have writers block right now, but i know i'll type more in a mintute :)
ok lisa i do have a question. you were having frequent pvc's and v tach. how frequent are we talking? because i have them, much like anyone else, but last sunday they were constant. like i would say a good 6 in a row every few seconds for over an hour...its uncomfortable to the point where its ALMOST pain, if that makes sense...idk im just noticing between the tachycardia i suffer that races instantly and slams to a stop instantly, and the pvc's becoming more frequent than ever, i feel like im falling apart. OH and my dr tells me that my tach will go away one day...uhm i dont buy it. this runs in my family (or something similar, since im the only one symptomatic enough to get treatment...my brother is symptomatic but is scared to go to the dr) and it never goes away...my grandma had this all her life and NOW shes got valve damage im guessing due to wear and tear
I've had some type of arrhythmia since I was 9, as an adult they increased and I had alot of episodes that I found out were NSVT runs since about age 20. Dr's after then would check my heart, do blood tests but never send me to a cardiologist and told me that fainting was nothing to worry about unless I was fainting daily (not true).
When I complained to my dr in 2004 (age 36 or 37) about the chest pain, shortness of breath and fluttering in my chest she said it was "palpitations" did an EKG and nothing was found. I switched dr's in 2005 and he said it was nothing also and couldn't find any reason for what was going on - he attributed it to me having 2 jobs, stress of family work and needing to lose 30 or 40 lbs.
I kept going back to him and finally he convinced me to go on his weight loss program in April 2007. He did an EKG, blood work, physical and said he found nothing wrong, even though I had shortness of breath and very frequent pvc's - bigeminy (look at my 4/27/2007 EKG in my photos) I would go between Bradycardia with hr's in the 40's & 50's then have NSVT runs where my hr would skyrocket, and be short of breath and faint. I lost weight but still felt miserable but I kept exercising and watching what I ate.
In 2008 I started fainting more and went back in, he again told me it was my weight because I had gained 10 or 15 lbs back and wanted me to go back on his program - he did an EKG and found nothing was wrong other than Bradycardia. I still went between Bradycardia and NSVT runs daily but I knew from the ekg's nothing was wrong.
Then in Jan 2009 I fainted driving and had episodes in Feb/March where I felt my heart stopping. I really didn't think it was my heart stopping, but my dr's in June/July 2009 said it could have been but there was no way to tell. My tilt table test showed when I faint it was my heart stopping, which is extremely rare.
I don't think there are enough answers and my cardiologist says they don't understand all arrhythmia's - there's just too many to go through because each cell has something like 220,000 cells I wish I could remember what all he said because he took so much time to explain [brain fog].
There are familial cases; my oldest daughter is 24 - she fainted and had arrhythmia's as a child and as an adult and my oldest son who's 25 started having some shortness of breath, arrhythmia's and fainting this year. I wish I could say I understand all of this but I don't; dr's haven't found a cause for mine but suspected genetics play a part and I feel better because my current cardiologist is trying to find those answers =)
keep searching until you find the right doctor who will work with you to find the answers for you and your family...
sorry to ramble on, I always feel bad when someone is having such a hard time such as I did with doctors.
oh no, please ramble. i need to hear what you guys are going through. not only can you vent, but i learn more and more :) i don't mind at all. see, i'm so afraid if i switch my doctor the next guy will give me the same run around bs and i'll be even more stuck than i am now. it's been 3 years of pleading with cardiologists so far...i don't want to have to do this anymore...answer me this, though: if i have sinus tachycardia FOR SURE (which i do) and i also have the symptoms of avnrt but they have not found it on an ekg yet since it's not as frequent as some people (sometimes every day all day, sometimes i have a good break of weeks/months with no avnrt-like episodes), is it logical to do an ep study? or am i pushing too hard?
that is such a difficult question :( what I've been told by every doctor is - it depends on an individual case; symptoms, diagnosis and heart structure...but I've seen others who have an ablation for less than what you're going through...
now the really downer...EPS and ablation may not find what's going on and may not cure you :( after my EPS/ablation, I got rid of pvc's and replaced it with PAC's PSVT, then a few months later the pvc's returned full force - doctors don't know if it returned in the same spot or different spots and I'm in no hurry to have another surgery. I went through 5 or 6 beta blockers until Inderal did the trick and helps my symptoms, but I do still have NSVT runs - sometimes 3 - 5 runs daily.
haha!! i was just gonna use riddles like 'this does what a vacuum does to the carpet' pahahahaha! i know i'm so glad to have everyone work together as this amazingly strong support group. i dont know where i would be without everyone here :) thank you from the bottom of my very confused heart :D
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