.png)
Looking for help or advice
It has been awhile since I have posted and quite a bit has happened. Long story short got diagnosed with IST about 3-4 yrs ago, I have had 8 ablation for the IST, junctional tachycardia and svt the came back after ablations. I have had also 2 pocket revisions due to pm's moving. I started out with just single lead pm, then biventricular and now since I have diaphragm still from the right ventricle lead my dr at mayo clinic (which is amazing) added a 3rd lead in the left ventricle so after its stable they hope to turn off the right lead which leads me to the CRT-P that I have now. Now for my questions...Even though I'm pacer dependent, as I do not have anything left of my sinus or av node at this time, my heart rate stays right about 70 which is where its set at, I am still so tired, nauseated every single day. I was not sleeping at all at night so I take ambien but other than that I do not take any other meds. I thought for sure after the pm would get the heart rate under control I would feel great. I do have a good day here and there but the day after I can't get off the couch. I will be so dizzy, my bp will be low and I will sweat like a pig everytime I get up. If my heart rate is better why am I still feeling so bad? Oh and I forgot to mention I also have vasovagual episodes. I plan on talking to my dr at mayo in july when I go back but just trying to find answers.
3 Comments
Newer version of your condition
by PJinSC - 2015-04-25 02:04:19
I have a CRT-P installed with three leads, one to each ventricle and one to the atria, but it does nothing because after two ablations to fix a-fib (Dr. #1, an EP )and then a-flutter (Dr. #2, also an EP), then an AV node ablation by Dr. #2 to separate the sinus node from communicating to the ventricles and activation of the PM so I am 100% PM dependent. I will roll back to 40 bpm if the PM quits. My atria are chaotically beating higher than the pacer lead is set for, so it does nothing but monitor. They originally set the ventricle pacers to control 80 bpm and then lowered the setting to 70, where is has been for two years. The rate control is turned on, and I am able to do quite a bit of physical activity, but have learned to slow down or take a break when I get breathing hard or fatigued feeling. I plan on having a long discussion with my cardiologist who is caring for me now about the rate control settings at my next interrogation. I have a home monitor, and they have not called me to come in, so even though they are satisfied, I am not, not completely. I still get awakened by PVCs. I wear a CPAP for apnea, and it helps me do deep breathing and get relaxed and go back to sleep. Are you monitoring your blood pressure? If my BP goes low, I get symptoms somewhat like you describe. I'm still not convinced I am on the right BP medicine.
There is nothing that can magically correct our situation, but if you are feeling bad, don't let your doctor brush you off. Like I've said here often lately, IT'S YOUR HEART!
Good Luck and Good Life, PJ.
Daisy
by Grateful Heart - 2015-04-25 11:04:25
If your sinus node is not working (SSS) make sure the Rate Response feature of your CRT is turned on. That will increase your HR upon any activity, even just walking across the room.
I would be very surprised if the RR is not on for your condition since your Doc is with the Mayo Clinic but....you never know.
It could always be something else so don't wait until July to see the Doc. Call and make it sooner so you can feel well.
Keep us posted,
Grateful Heart
You know you're wired when...
Intel inside is your motto.
Member Quotes
It may be the first time we've felt a normal heart rhythm in a long time, so of course it seems too fast and too strong.
Ask the Dr.
by doublehorn48 - 2015-04-25 01:04:26
When I don't feel right, I call my Dr. and get an appointment ASAP and let them fix my problem. I wouldn't ask us I would go to my Dr. at the Mayo clinic. You have to have a great Dr. if you go to the Mayo clinic I'm jealous.