Chiari and Arrhythmia?

[flutterbye1888]

Hey, I'm Sarrah, I was diagnosed with Chiari about two years ago. I'm seventeen years old. I fairly recently started showing symptoms, although I've been reading up on Chiari and I've noticed other things that I thought were normal human occurrences but are actually caused by my 'lovely' brain. For example, I've had tinnitus (ringing in the ears) for as long as I can remember and occasionally I forget how to swallow and apparently that's a Chiari thing too. ANYWAY, I have been filed with anxiety recently because of my most recent symptom, arrythmia. I could say something sarcastic but I won't. I'm terrified my heart will stop, especially when I can't find anything online that matches my descriptions.
Usually my arrhythmia is the 'normal' skipping thumping feeling, but sometimes I'll be doing something strenuous and my heart won't beat as hard as it should for the exercise I'm doing, then a few minutes later I'll get flash after flash of absolute weakness and fear, as though my heartbeat has slowed or weakened too much for my body to live normally, if that makes sense.
Well, I was wondering if any of you have had the same experience and if the arrhythmia goes away after decompression surgery? Feel free to share anything, I love to feel I'm not alone in this.

[flutterbye1888]

I get weird numbness as well, although for me it's more of an on and off thing. It always starts on my left pinky finger, then my arms. Then I get really dizzy, usually when I'm in the car.
My Neuro appt. is this weekend, I'm praying for a simple referral.

[Emme80]

Chiari can be so frustrating! I was treated for anxiety&panic attacks for about 10yrs. Middle of the night & all of a sudden I'd wake to my heart thumping so out of whack and I thought I was going to...I don't know... I just thought something was going to happen. And my heart was out of control. I was switched from anxiety meds. to propanol (in hopes the propanol would help w/the migraines)...but I was put back on the anxiety meds as the other was not much help, I didn't feel...or not as effective. My awesome NL believes I may have migraines separately. A Sumatriptan Nasal spray is my golden medicine for a migraine. But, given I just had the Decompression surgery, we shall see if the migraines lessen...which if at all related to the Chiari would be great!!!
But my goodness.....the heart palpitations are horrible!
My NL is firm on ruling things out before relating to Chiari...as I was sent to a Cardiologist for the palpitations. As well, she sent me for so many other tests... I had numbness on the left side of my body-scattered numbness, but just on left side-just as the tinnitus was on the left side too! But I had a dreadful EMG test done to rule out any peripheral nerve damage (?) or if it was from compressed nerves... To my surprise, the 2nd day in the hospital, after the surgery, when my Neurosurgeon came in to see me  (at least that's the 1st time I remember seeing him... As the 1st 2 days I don't remember much...but I DO slightly recall not being very compliant during a CT scan. :/  ) he did routine tests on me-he rubbed both sides of my face and I jumped (ok, it felt like I jumped...but likely my eyes opened big) b/c for the 1st time in 7 months,  the left side of my face wasn't numb!!! There's only a few things I've noticed that's changed since then....but I'm excited for the future!
Sooty to hear about your heart and our *lovely* brains!
I hope I can be of any help!

[kwalker0004]

But Many of us from the lower eastern shore do seem to travel to the Baltimore region. As I know it is difficult to travel with our condition we try to find some one close. But not many doctors are well reversed in this area. I have had my DX for two years. So I have been to just about every where on the lower eastern shore but we just don't have the specialities needed. But the new one is Salisbury seems well versed on the condition. Even though he asked about the test that should be administered, I told him I already had the test and we are discussing surgery as of October 15. But he seems to be a nice person in general. But it takes time just don't feel like you have to go with one doctor especially if he automatically suggest surgery with out the necessary test results. Other than that just be well educated in this area. Best of luck

[flutterbye1888]

I'll be sure to mention these options to the neurologist, thank you.

[kwalker0004]

Flutterbye, your best bet is Bethesda. But there are a couple at John Hopkins and there is a new doctor is Salisbury at PRMC Neurosurgeons. I have met with the one is Salisbury, he seems pretty nice. Best of luck to you on your journey. I have a great NL to from Salisbury as I am also from Delmarva. I live in Maryland. So If you want we can communicate we can. You can add me as a friend.

[selmaS]

  That's great as there are several Drs down there... and one of the East Coasts number one EDS Dr is in MD too!

Good luck and keep us posted.

[flutterbye1888]

Actually I know of a chiari specialist in Bethesda Maryland, which is near enough to wear I live that I can get there. I don't have an appt. yet, we're going to ask my regular neurologist to work towards switching us over so that it 'counts' in our insurance. We live in the DelMarVa area, so anywhere in DE MD or VA if you could look.

[selmaS]

  Hi and welcome to the Chiari forum.

Having this condition is very stressful...and scary...BUT the Chiari itself can cause the heart palps and anxiety....Chiari affects the brain stem and spinal cord...so it can affect ALL of our functions.....

I had the heart palps and anxiety too....but all is gone now since I had surgery...having the right Dr to help you is key !

What area  do you live in....I can post some Drs names for you to research.....

[flutterbye1888]

I forgot to mention that initially the ordinary arrhythmia was triggered by caffeine, but I've now cut all caffeine (and chocolate, bah!) Out of my diet, and I was wondering what you've tried and what's worked. I was considering cutting sugar out of my diet and maybe gluten, but I'm unsure.