I've been having these heart issues off and on for nearly 5 yrs now. I get what i call flutters, kicks, and flip-flops(like a fish out of water), and the dreded grinding. It usually starts while im sitting my heart rate goes up and becomes strong then i get the flutters, my pulse stops for a few seconds, then starts back up again. The whole episode can go on for hrs like that and i become so exhausted, my chest hurst and my palms get sweaty, and i can not sleep. My question is, does anyone with these heart issues have their episodes come and go where you have them for a few days then it calms down dor a week or so then out of nowhere, it back again? I've been tested with EKG's, an EP study, treadmill, holter moniter, and it never acts up when they are testing me. I've lost faith that they'll ever be able to figure this out. They just tell me at age 37 im too young for any kind of heart problems! When I get these episodes, it makes my Chiari headaches much worse! If anyone can relate or may know what it could be please let me know! Thak You so much!!!
I get it also where my heart rate goes up, beats strong, and then flutters strong a couple of times, but then goes back to normal. I get that instant scared feeling like I'm afraid my heart has stopped. This happens anywhere from 4-6 times a week and it only lasts about 5-10 seconds. I doesn't cause a headache for me.
Back in the early 90's I took the diet pill Phen-Phen for about 6 months and then years later they found out that it was causing heart valve problems. So that was one of the tests the doctor did on me was an ultrasound of my heart valves. He said they appeared to be normal. My doctor said that it could just be my heart skipping a beat or it could be stress related and that we would keep an eye on it. I had not been diagnosed with CM at the time.
They never gave me a definite answer as to what it was, but I know what your going thru,,,it is scary and frustrating.
Sparky
Razzle- I'm not sure if I have a syrinx, they have not done any MRI's other than brain, CINE and cervical. My arms and legs are going numb/tingly ever since I had a bad fall a few months ago and my PCP is concerned about syrinx, but no one has checked.
Sparky and Emmaline- Over the years the Dr's have tried me on virtually every kind of beta-blocker, they all made me sick. They tried me on a new one I can't remember the name, I had some more energy and my mood was better but my symptoms were still there, so they took me off that and tried to put me back on metaprolol. I refuse to take that one as me makes me very sick. I guess it's just one of those things we have to put up with. It used to worry me, but now it just aggrivates me because it seems to make my other symptoms much worse. Thanks for your responses, it's good to hear I'm not the only one who is experiencing this. Though I'm so sorry you both have to feel this way):
Razzle- That's interesting! So your heart issues were caused by your syrinx? What Dr. tested you for that? I wasn't sure if the heart issues were something the NS would be interested in, though I was planning on bringing it up with the new NS I'm going to see on June 20th just to see if she could recommend a good cardiologist to test me for POTS. I am having pressure issues and hr issues upon standing and difficulty walking at times as well as the flutters and flip-flops. It's hust a matter of getting a Dr. to listen to me and take me seriously. I'm hoping the next NS is willing to listen and willing to do the thoracic spine or full spine MRI, though I'm definately not looking forward to it. Fingers crossed. Hope all is well with you and I am so grateful for your input. I'll let you know what I find out.
I have the same issues with my heart. I have been tested over and over again and everything comes back normal. The heart dr put me on a beta blocker as well and has helped some but I still have them but not as much. They also said it is anxiety. When I get these I am out of work for a few days. I was diagnosed with rheumatoid arthritis in Sept 2012 and it just doesn’t affect you joints it affects all organs too. It’s and auto immune disease and I am finding out people I know that have Chiari also have RA. My neurologist is also checking me for Ehlers Danlos Syndrome. I know a few people that have Chiari have this disease as well.
I pray everyday for is Chiarians that they find us some HELP!!! And not keep telling us it’s all in our HEADS or we are hypo condriacts!!! I keep telling them Duh it really is in our Heads!!! Lol!!’
I have had these episodes as well. Mine are PVC's. The sounding like your heart bead stops is/could be actually beating too fast too feel or show up on a monitor. Basically, the electrical impulses in the heart are misfire too fast. You can try giving up caffien, soda, coffee, chocolate etc for awhile and see if they go way. Takes awhile to get your system clear though.
The other symptoms could be from anxiety when you have them or anxiety can cause them. And with Chiari/Syrinx it can cause those kind of symptoms even if you are not truly anxious. In my opinion, at least what docs and normys would consider 'anxiety' symptoms. (Not that I believe that is what they truly are for us chiarians an SM sufferers with our nerves all messed up)
I try to do yoga breathing and relax and positive self talk. If your tests are coming back normal and healthy then try to trust your body to readjust but keep asking and talking to your doc about it in case it is something else. A king of hearts monitor may be your next step since you wear it for more than 24 hours. But at this point if your other tests are coming back good they probably wont be able to justify it to the insurance company or to charge you for it.
Hope you have good luck with this and find out something to comfort you in this.
Paula- It's so frustrating to me when these Dr's say it's anxiety or depression. I swear it's what they blame everything on when their tests come up with nothing. My Grandmother was told for two years by a few different cardiologists that there was nothing wrong with her and it was just anxiety. If it hadn't been for my Aunt fighting for her and finding a Dr. who would actually think outside the box, she would not have survived another year. Thank goodness, she's fine now and has the aid of a pacemaker and medication and she's still with us today. Just makes me so mad that so many Dr's wont go the extra mile and listen to their patients. I'm very lucky to have a PCP who truly cares and knows me well enough to know somethings not right and he always finds me anither specialist when they say anxiety. Sorry I'm on my soap box hear but I think too many people have to suffer because of being dismissed.
I also hope that someday these Dr.'s will take the time to learn about chiari and its effects and find a way to help us end the suffering!
Beeba- Thanks again, I'm definately going to ask for the tilt table test. I'll see if I can get an electrophysiologist.
Just-Whisper- Thanks, I have done the caffeine, chocolate, etc.. yrs ago when this first came up. Was off all for a couple months and was still having symptoms. Anxiety isn't an issue because when I'm at my most anxious about something or beyond stressed out, I expect them to act up....and nothing, not even a bobble. It always happens when I'm mist relaxed, or having fun when it hits. Seems like it should be the other way around, my PCP has ruled out anxiety as a cause. I'm going to try the yoga breathing though, couldn't hurt. Thanks again for you help:-)
WOW! As much as I am having major issues finding the right doctor,I can NOT believe you have been diagnosed with chiari & they didnt immediately order an MRI of the spine!! That really shocks me!!! That being said, I also experience the heart issues, I call them the bubbles, I hate it. I had no idea that can be related to the syrinx!! Thanx for the info all. & as for Kristi W, a tilt table test is a good idea, but GET THAT SPINE MRI!!!!!! soo important to your diagnosis & course of treatment!!! & at the risk of being a broken record, find an NS experienced in chiari & dont settle!! keep a journal, write down everything they say, talk to as many doctors it takes till you are comfortable with one, & use this wonderful site to sort the info!! May I ask what area you live in? & good luck
Jessica, Thanks. Yeah I couldnt believe they didnt order a full spine either, especially with the back pain i was trying to co plain about. now that i had that bad fall back in March im noticing that im losing feeling in my arms, right leg and foot. Cant hold a book up to read or use my tablet without proping it up. Noticing my arms and leg getting weaker at times also. Not sure if that may have to do with a syrinx. I live in Michigan and have an appointment to see Dr. Holly Gilmer June 20th. I was supposed to go see her in May, but my son had a bad accident at track practice and had to be ambulanced to the hospital because they thought he may have had a spine or neck injury. Thank goodness he was ok, but he had a broken wrist and smashed face with a broken tooth. So due to my son being my most important issue, i rescheduled my appointment. I am praying this Dr. is as good as people say she is. Fingers crossed! Thanks for your help. You are all amazing, thank you:)
Sorry to hear about your son, glad he is recovering! I asked where you live because I was wondering why your appointments were taking so long to get, but that clears it up. My guess is that your fall triggered your chiari symptoms, & unfortunalely, they are here to stay. I happened to wake up one morning in excruciating pain. Assumed I slept bad & pinched a nerve.Every doctor I see Is baffled that i did not have a fall or any kind of injury that brought it on so sudden & strong. They all agreed on 1 thing, that injuries commonly bring out the chiari monster.Again, good luck & DEMAND the spine mri ASAP
Thanks, will do. You're so kind!
My only known medical history before recently learning about Chiari was heart arrhythmias. I learned of it through pregnancy in my 20s when I collapsed not knowing I had other issues going on but at that time and through the years I suffered from rapid heart rates including my heart going over 230 at the age of 37. I am now 44 and have Arrhythmias completely under control. After having an EP study and a heart cath done, almost dying in my sleep at 37, I learned that I have multi focal atrial tachycardia. Typically my Arrhythmias were caused by too much caffeine, stress, emotional stress, not enough rest or lack of cardiac exercise. They could not do an ablation because I had too many signals around my heart. However they did tell me that I do produce high levels of adrenaline. You may want to keep away from sugary juices, fruits or drinks especially at night before going to bed. Maybe a chamomile tea will help as well. They did put me on Atenolol which did help first few years then i was weaned off. I have been medication free for about two years but I do keep it handy just in case I get a sudden rapid heartbeat. I do not do stairs especially walking up stairs …it causes me to feel fatigue, Short of breath and lightheaded. I watch what I eat (healthy), NO msg, I only have one coffee only in the morning and I try to monitor my stress and light cardio exercise (walking) is very very important. So far so good along with my RELIV supplements that I take daily. Feel free to email me I’d be happy to talk to you about any history on arrhythmias I’m pretty Knowledgeable on this topic. God bless.
Also if you have not found a cardiac doctor please look for one right away. An EP specialist / electrophysiologist is who you need to see they specialize on the electrical and rhythms of the heart etc.
I would be tested for POTS if I were you. Tilt table test will diagnose if you have it. It is very common amongs Chiarians. I have similar issues and am on Inderol(propranelol) it does help with the palpitations and headaches as well.
I have had palpitations since my early 20's. I can get really hard palpitations when I work out and then it stops. But sometimes pounds out of my chest. I have had a few episodes where I would be laying in bed and my heart will just start beating fast out of knowwhere. I have had heart workups quite a few times which consist of echo cardiagrams stress echo's, nuclear stress tests and have found that my heart is perfectly normal. My holter monitor just showed some palpitations but nothing dangerous. Everything is so unexplainable with with Chiari I just don't ever know if anything can be real serious or just chalk it up to my Chiari. Back in my 20's they did prescrive Propanalol for my palpitations. I was also told it is just my adrenaline is high. It helped but then I weaned myself off and have been fine. It happens every once in a while but I don't feel I need it at this time. I hope you can get some sort of relief from this and hopefully like me it will just ease up. Hope you are having a pain free day!
Ask for a head up tilt table test. Many chiarians have autonomic dysfunction. I have NMH and POTS as does one of my children. Our body's seem not to be able to regulate themselves. I cannot control my temperature. Stress make things worse. When I stand my heart rate goes up and my pressure drops. Over the years I have learned to compensate to make things better.
http://www.dynainc.org/ they have good information
http://www.dinet.org/ also has good information
They have recommended doctors for dysautnomia as well find one of those Dr's.
Good luck.
I too get this. I recently went to a cardiologist for a tilt table test because I recently passed out. I asked them about this same issue. They told me this sometimes happens & not to worry about it. When I was pregnant with my last baby almost 10 years ago I had those flutters a lot. So they put a heart monitor on me for three days. I had to wear this non stop. I had to push a button & document date, time, & activity I was doing at that time. They found NOTHING going on. 
but good news I guess. LOL
I'm having chest pain but mine come when I burning in left arm, I have like a shock in my chest. I've done all the testing with my heart and as usual no pain during the testing. So I don't know what to do at this point, but I'm glad someone posted this. I have an appt with my heart specialist next month I'm going to mention POTS to him to see what he thinks.
Thanks for all your great advice! It helps knowing it's not just me, though it saddens me to think anyone else has to deal with this. I have also been told palpitations are nothing to be concerned about, but when they are accompanied by chest pain, shortness of breath, head pressure, slurred speech, and near collapses I can't help but wonder at times how thats ok. I have been with a good friend of mine who is a CNA when they've occured and it's scared the living daylights out of her. She says I look like I'm having a stroke. I've been told I look gray. She's freaked out on me and drug me to the hospital, but they always say I'm fine and I'm too young for any kind of heart issues. I'm used to it now and absolutly refuse to go to the hospital anymore for it or really anything else for that matter. It doesn't scare me like it used to and I always know that it will eventually pass, but it just gets really old after a while not to mention it really scares my kids. Like I always tell them and my PCP, it hasn't killed me yet and it's not going to. My Dr. doesn't like it when I say that, but I can't live in constant fear. I'm sure it's probably just the Chiari, but will still get tested for POTS to be on the safe side because I sure would love to feel better.