Just wondering if anyone else has heart flutters, that are not regular. Trying to figure out if Chiari reoccurring problems can be the cause.
Ahh, yes, I do have heart flutters. I saw a couple of cardiologists about it. The first time my heart was fine, so when he did all of his tests, there was no issue. The 2nd cardio started his test… …all was fine. As he was giving me his ‘final speech’ it started. pump, pump, miss, miss, pump, miss, pump, miss… My pulse was all over the place and finally he believed me. He told me I have an irregular heartbeat and gave me a prescription for a beta blocker. The cardio was of the opinion that it ‘could’ be head related, so I asked the neuro at my next appointment ‘Ohh no, it can’t be anything to do with your head…’. I’ve seen numerous other medicos and they all seem to have their own view/opinions, now it’s just become one of those things I just have to manage.
But I must say, it’s very disconcerting when my ticker flutters. I get can get a little lightheaded, have to grab hold of furniture to stabilize myself and then I think ‘Was that my head or my heart?’ and to be honest, I don’t know which. But then, nor do the dr’s.
Merl from the Modsupport Team
I had decompression surgery Sept 2013. All was great at first but had some symptoms return after the first year. Well the minor symptoms have pretty much stabilized until the last year and my headaches have returned as well as dizziness and heart flutter. I am having a CT and Echo done on Thursday to rule out any cardiac or stroke possibilities. My blood pressure is also very erratic
For no reason.
I was diagnosed with Chiari 1 back in 2011 and spent a year seeing help at the Chiari Institute and Cleveland clinic. It took an orthopedist to find that I have ehlers-danlos type 3, hypermobility type. Chiari is one of the many things under the umbrella of EDS. The first thing the geneticist did was send me to cardio bc I’d been having heart fluttering for years. He found a small hole in my heart and put me on beta blockers, which changed my life. I no longer have migraines or horrible headaches, which rolled my life for twenty years. They were caused by tiny blood clots jumping through that hole in my heart and not being filtered through my lungs before traveling to my brain. The headaches are just GONE. Not one in almost two years now! It turns out after all this time, none of my symptoms are caused by Chiari and decompression won’t help me. I’m glad I didn’t have the surgery ten years ago before my EDS was diagnosed, although it may still become necessary someday. Read up on EDS- there may be many more cases of EDS and Chiari than people realize as cervical instability is very common in EDSers. Apart from that, just know that a lot of adults end up needing beta blockers for irregular heartbeat, so it may be entirely unrelated to Chiari.
I had PVCs (heart flutters or a double heart beat) turned out to be VT - PVCs which means it occurred more that what was “normal”. I only found out during my pre op and had to get on medication before my surgery to control my heart and the I actually had to have a heart ablation 2 weeks after my brain surgery to fix my heart beat all together so I wouldn’t need to take medication to control it. They could never say for certain it was my Chiari that caused it, but my neurosurgeon and cardiologist were very interested in finding out if there was some form of correlation between the two. Turned out to be pretty serious and it could have been fatal if they didn’t catch it when they did. I guess it was wearing my heart out beating so much. Most PVCs occur about 3-7% of the time, mine was occurring 50% of the time. So every other beat was a double.
Very interesting feed
I have heart arrthmia. For years they said mine was due to thyroids. In the last few years the cardiologist said it could be linked to chiari. Beta blockers cause me to pass out. The cardiologist I go to believes in nutrition and vitamins. He had me to increase my calcium magnesium, add COQ10 & Acetyl L-Carnitine. I have a good multi that is loaded with vitamin B so I stopped my multi Bs. If I go a few days without taking my vitamins, my heart starts flipping and flopping extra. … Several physical therapists had already told me to take Cal/Mag and Vitamin Bs. They said it would help my muscles and muscle pain.
I get heart palpitations…they’re ridiculous! What I find funny is the neuro says it has nothing to do with chiari but my chiari is flattening my medulla which controls your heart beat. Um hello, need I say more. O yes I must lol I also have issues swallowing which they say nope has nothing to do with chiari & guess what that too is something your medulla controls.
I also have heart flutters, I brushed it off because my family has a history of HBS so I just figured it was starting early for me. Mine come about at the most random times. I could be laying down & all of the sudden I feel my heart pounding all over my body. Sometimes it gets so bad that I can literally see my heart physically beating out of my chest. Do you have them like this as well?
The reason I posted this question, I am 4.5 years post op and have reoccurring issues. I remember the heart flutters from years back and now they’re back again. Doctor thinks stress, wore a heart monitor 24 hours (of course no issues), put on high blood pressure meds.
My flutters come and go. Usually in evening when relaxing on couch. I feel my heart quiver. Normally few seconds, repeats 2-3 times. I get a tight (muscle cramp) pain also at times. The flutters can be so bad anyone can feel it. Doctor actually felt it and heard it, reason for monitor.
I’m thinking this is another Chiari linked issue. Ive been hearing from lots of Chiari people with same flutter. This site and 2 others i belong to. Thanks for your story.