Aa
Will my heart ever be normal again
I was diagnosed with a heart arrhythmia after going through EPS with ablation 9 months ago. After 5 hours, dr aborted ablation as arrhythmia is in a dangerous location that if he continued, could leave me needing a pacemaker. Was put back on flecanide which caused bad headaches. Switched to Rhytmol (225 mg 3X daily) which was working great at controlling my tachycardia. I also have thyroid cancer and had to come off my synthorid for 4 weeks (for radiation therapy) and had to have weekly ekg's during this time period. By week three, I had to be hospitalized as heart was in all sorts of arrhythmia from bradycardia to tachycardia to ventricular bigemny. I have been back on my synthroid now for 3 weeks and heart is still not right. The rythmol which worked great, now seems to work only some of the time. I am constantly short of breath and even walking up a flight of stairs has my heart beating fast. Perhaps I just need more time to heal but am getting frustrated. Just wondering if anyone else has had a similar experience and how long it took them to feel "normal" again. Dr wants to go back in and repeat ablation with me knowing the risks, but I am not sure if I am ready for a pacemaker just yet.
Sorry I am just posting to your reply. I have been remiss in checking site the past few weeks. Does your endo and cardio say that the loss of the thyroid and the heart issues are related? My drs feel that the PVC's are related but not the heart arrhythmia. What concerns in regards to long term side effects did your cardio dr have? I was originally on Flecanide which I had side effect with so was pulled off that and placed on the rythmol which until coming off synthorid worked well. Even though I am back on 3x a day now, I am still struggling with tachycarida and am getting frustrated. My TSH is still high (95 two weeks ago) and dr says that he hopes as TSH continues to drop the tachy will go away as well. I agree with you that normal for us is completely different that others. And I hate when someone tells me that thyca is the "good cancer" especailly drs.!
OMG! were we seperated at birth?! I also have Thyroid CA and have been waiting for, oh I don't know, a half a decade for things to go "back to normal". Apart from the ablation ( don't have insurance so can't get one yet ) we have been through the same things. I was on Rythmol 225 TID for 12 years and it was helping a lot. Then a new cardiologist said he didn't like the side effects that could come along with it ( although I had none the entire time ) and took me off it. My heart went right back into its crazy behavior of constant PVCs/PACS and started up with PSVT to boot. Having to be converted half a dozen times with Adenosine and the trips to the ER are a real pain in the behind. I also go from tachy, to brady and everything in between. I am now on Inderal which seems to be helping a bit. As far as coming off the synthroid for radiation therapy, I find when I go back on, it takes a good 8 weeks to get back to what "my normal" is. Anyhoo what this all boils down to is, I've been going through this crazy rythym business for more than 20 years ( started when I was dx with Hasimotos and then Hypothyroidism and on through the CA ) and I'm still kickin-so hang in, and remember whats "normal" for us may not be normal for everyone else.
Unfortunately for me my problems are very complex. I suffered alot of damage due to long term symptoms that went undiagnosed due to dr's ingoring my complaints.
For me there are no easy answers and a pacemaker helps my HR not go below 50 but hasn't helped with the sudden drops because my ANS is dysfunctional resulting in my hr bottoming out before the PM has a chance to do it's job. Pretty much the same thing with regulating my high hr's also and VTach & fainting episodes...I can switch from 50 to 200 on a dime and then my bp gets all weird and will bottom out or sky rocket.
Meds, PM/ICD and lifestyle changes haven't helped much; so I was told I have to find my triggers and avoid them at all costs, sometimes I just never know what's going to be the trigger - stress, anxiety, heat, cold, not sleeping, moving too fast, standing too long and sometimes there's no trigger at all.
There's really nothing that I can't do if I wanted to; a pacer/icd usually works well for most patients and after the recovery time (6-12 weeks) of your arm being in a sling you can slowly return to normal activities and many times you go back to your previous activities.
The one thing I do hear other patients say is they don't like the look or feel of the device; I have a Boston Scientific Teligen 100 (google search it) which is extremely small and you can't really tell it's there' however my scar was pretty ugly (look at my photos page) and took some getting used to and I had to change the type of bras I wear - wired ones hurt but others don't have this problem like I do.
My EP said my problem during my EPS was in a dangerous spot but it didn't take much to trigger my arrhythmia. He ablated but couldn't do more because it was down in the underside thin part of the heart (think the RV Apex?) that he could burn a hole through if he got aggressive.
It could be that a repeat abltion may work if they can find the place and fix the arrhythmia; as well as the pacer - it really might help alleviate some of the problems you're having if your doctor thinks it's a good idea =)
For me there are no easy answers and a pacemaker helps my HR not go below 50 but hasn't helped with the sudden drops because my ANS is dysfunctional resulting in my hr bottoming out before the PM has a chance to do it's job. Pretty much the same thing with regulating my high hr's also and VTach & fainting episodes...I can switch from 50 to 200 on a dime and then my bp gets all weird and will bottom out or sky rocket.
Meds, PM/ICD and lifestyle changes haven't helped much; so I was told I have to find my triggers and avoid them at all costs, sometimes I just never know what's going to be the trigger - stress, anxiety, heat, cold, not sleeping, moving too fast, standing too long and sometimes there's no trigger at all.
There's really nothing that I can't do if I wanted to; a pacer/icd usually works well for most patients and after the recovery time (6-12 weeks) of your arm being in a sling you can slowly return to normal activities and many times you go back to your previous activities.
The one thing I do hear other patients say is they don't like the look or feel of the device; I have a Boston Scientific Teligen 100 (google search it) which is extremely small and you can't really tell it's there' however my scar was pretty ugly (look at my photos page) and took some getting used to and I had to change the type of bras I wear - wired ones hurt but others don't have this problem like I do.
My EP said my problem during my EPS was in a dangerous spot but it didn't take much to trigger my arrhythmia. He ablated but couldn't do more because it was down in the underside thin part of the heart (think the RV Apex?) that he could burn a hole through if he got aggressive.
It could be that a repeat abltion may work if they can find the place and fix the arrhythmia; as well as the pacer - it really might help alleviate some of the problems you're having if your doctor thinks it's a good idea =)
Thank you so much for your reply. I often wonder if the way I feel is the new "normal". However, like you, quality of life is very important to me (have 3 children) so I too will not give up or give in.
If you don't mind me asking, has the pacemaker helped at all? Are there things you no longer can do now that you have a pacemaker? It's been almost a year since my ablation and going for it again knowing that I will most likely need one has been weighing on my mind for quite sometime. I am truly on the fence and have an appt with my EP in a couple of weeks and once again, repearting the ablation will be the topic of conversation.
If you don't mind me asking, has the pacemaker helped at all? Are there things you no longer can do now that you have a pacemaker? It's been almost a year since my ablation and going for it again knowing that I will most likely need one has been weighing on my mind for quite sometime. I am truly on the fence and have an appt with my EP in a couple of weeks and once again, repearting the ablation will be the topic of conversation.
It's been alittle over 2 years since my ablation, even with a pacemaker/icd I still don't feel "normal". I've tried Inderal as needed and long acting or time release, brand & generic forms but nothing really works and not sure anything ever will.
Been to dr after dr looking for answers and none have any and say I should just be happy I'm alive with what I've been through - not good enough for me; quality of life is extremely important. so I'll keep searching until I find something that works for me.
Been to dr after dr looking for answers and none have any and say I should just be happy I'm alive with what I've been through - not good enough for me; quality of life is extremely important. so I'll keep searching until I find something that works for me.
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