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Atrial Fibrillation (Very Long)


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#1 Buffheart

 
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Posted 05 February 2012 - 02:06 PM

I've been reading the few old posts here about A Fib, tachycardia, and various other heart problems and Celiac/Non-Celiac gluten intolerance, so I want to tell my story and see if others can offer some advice.

It started, or maybe was first noticed by myself, this past summer (2011). I began to feel this strange pounding/fluttering sensation in my heart several times a day. It almost seemed to come out of nowhere, but as it was summer I figured maybe it was some kind of reaction to the heat, even though the summer was very mild and rainy.

Come September/October I realized it wasn't getting better even though the weather was much cooler, but as I had no pain or shortness of breath I figured it wasn't a big deal and hoped it would go away. It didn't, so I brought it up with several of my doctors and got the standard "Oh okay. Anyway..." As a side note I think most of my doctors thought I was making stuff up because they usually ignored me.

Things still didn't get better. They didn't get worse per se (still no pain or anything) but they did seem to be more frequent than in the summer. In December I had an EEG run to test for some neurological conditions, unrelated to the heart thing, and they also hooked me up to the blood pressure monitor which I mistakenly thought was an EKG as they attached sticky things to my chest. While the stickies were on my heart did that weird pounding/fluttering thing but nobody noticed.

In late December I moved to a new state and started a new school. At my school I wanted to join the gym, but in order to do so I had to pass a physical exam which included lifting weights and running on a tread mill. Boy am I glad! The weights and such were not a big deal for me and I did better than I thought I would. It was the treadmill that got me and I am very thankful.

Before the treadmill was started the woman who is the school's personal trainer attached a pulse thingy to my finger. I'm sure it has an official name :P While I was running my pulse was normal and, as I used to run a lot, this was no big surprise to me, though the trainer was pleasantly shocked that I was able to run as well as I did. The problems started when I got off. No sooner had I turned the machine off then my heart started racing and my pulse skyrocketed. Then it would drop for a few seconds and then sky rocket again. And I could feel the familiar pounding/fluttering sensation. The trainer told me that wasn't normal and had me walk around.

Several hours later my heart was still pounding/fluttering. The trainer thought I had a murmur, but after talking to the nurse she thinks it's A Fib and I have to go see a doctor now.

The problem is that nobody has ever heard or picked up on anything because apparently it is only noticeable when it is happening, so if it doesn't happen nobody seems to care. And it happens many, many, MANY times a day, everyday. Exercise, anxiety, lack of sleep, and possibly heat seem to make it worse. Maybe hunger too. Sometimes it was happen every few seconds for hours at a time. It also seems to get stronger (not more frequent, but physically the pounding is more noticeable) at night, though I can still feel it often during the day. It's just weaker so it's a bit harder to notice. But it doesn't only happen when I am laying down. I could be sitting, standing, climbing stairs (which makes me feel exhausted and out of breath), doing pretty much anything and it could happen.

It starts off with a strange feeling in my chest. I can't describe it more than it feels like my heart either skipped a beat or didn't complete a beat. Then it will pound for a few seconds, maybe 2 or 3, then go away. Then sometimes it will repeat a few seconds later. It's like boomBOOM-BOOM-BOOM-BOOM where the first two beats occur almost at once. It's hard to describe.

I heard that there are people here with Celiac and heart problems and that going gluten-free helped their hearts, but mine is still the same. And, though it's not painful, it's annoying, especially because I think that is what is making me so tired all the time. It's also annoying because I worry I might have to give up horse back riding and using the stairs and all that. And I worry that I'm gonna have a heart attack or something. And I hate the way the personal trainer looks at me with pity. I hate when people pity me.

Anyway, just wondering if you guys have any ideas on what it could be and what could be causing it. Obviously nobody here is a doctor and can diagnose anything, which is why I am going to see a doctor this week or next. But maybe somebody can offer some useful advice or maybe has a similar story. And feel free to ask questions or to ask for clarification. Thanks and have a great day!
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#2 mushroom

 
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Posted 05 February 2012 - 03:38 PM

Yes, I am very familiar with atrial fibrillation, one of the banes of my life. I want to prefance what I'm saying here by saying I am not a medical professionall, I am just relating my experience and what I have been told.

The first thing you need to determine is if you are still in atrial fibrillaltion. I do this by feeling the pulse at my temple right at the hairline just below the "bone bump". of the skull. If the pulse is steady, regular and not racing you are not in afib. If it is a bit erratic, with BOOM BOOM BOOM BOOM bursts followed by pauses, you are probably in afib. If you remain in afib continuously and do not convert to normal "sinus" rhythm, which is what they call a regular heartbeat, you should go to the emergency room and tell them how long you think you have been in afib. Without intending to alarm you, if you remain in afib continuously you run the risk of stroke because the blood is not flowing normally out of your heart and may pool and clot, and this clot could find it's way out of your heart and clog an artery. You do not want this happening. Do this test now.

So, now, hopefully, you have determined that you are not currently in afib and can relax a little. Afib can happen any time and does not always need a stress trigger. The body often self-converts to normal sinus rhythm without any medical intervention. I went along like this for years not knowing what it was, and it would last for an hour, then two or three. I wore a Holter monitor (a 24-hour walking around EKG)and nothing happened. I am always able to tell I am in afib because it always gives me a "kick" when it goes in and I always feel a weakness and shortness of breath while I am in it (weak lungs). It is a very alarming experience when something like that is going on with your heart and the first time it happened to me (with raging tachycardia) I thought I was going to die. That was 6 years ago and I am still here :) But finally, I could not self-convert and I ended up in the emergency room and ICU even (though that wasn't really necessary :rolleyes: )

The following link is one of the best articles I have seen explaining atrial fibrillation: http://www.answers.c...al-fibrillation

This is something that you should have evaluated right away by a cardiologist. He will probably have you wear a Holter monitor to see how your heart is behaving during daily activities. And then proceed from there. It is not something you should let ride, particularly as noted earlier, if you remain in afib. I have been instructed that if I am still in afib 12 hours later I should head for the emergency room. There they can give you medications that will lower your heart rate and blood pressure, and others that will control your rhythm.

So do get back to me and tell me how you are, please? :) Hopefully you are doing just fine and you should make a doctor's appointment a priority. Do feel free to ask any other questions that are bothering. I will be here today.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#3 Buffheart

 
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Posted 06 February 2012 - 12:47 PM

I am going to try and get in to see the doctor either this week or next, but hopefully this week. I'm just a bit apprehensive that this doctor will say that nothing is wrong and send me home. And I can't get in to see a cardiologist just yet, so I have to stick with a regular PCP for the time being. But I have a note from the trainer explaining in more detail what she noted and I could probably get something written from the nurse as well, even though she hasn't noticed anything other than an increased pulse once when I was sick. With that information I'm hoping I can finally get some help as it's very scary when my heart is pounding on and off for hours. I worry that I am going to die or something. But I'm still kickin'!

BTW, is a Holter Moniter that big watch looking thing that one wears on the wrist and it records pulse and blood pressure and such, or is it much bigger? I can't exactly go lugging a big machine around work and campus, so I'm hoping it's small. And, if I had to wear one, is it something I have to stay in the hospital for, or can I still go to school? And also, has anybody with heart problems noted that they got better, or worse, from eliminating certain foods? I'm not sure if this is food related, but it would be nicer if it was.
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#4 ravenwoodglass

 
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Posted 06 February 2012 - 01:11 PM

I am going to try and get in to see the doctor either this week or next, but hopefully this week. I'm just a bit apprehensive that this doctor will say that nothing is wrong and send me home. And I can't get in to see a cardiologist just yet, so I have to stick with a regular PCP for the time being. But I have a note from the trainer explaining in more detail what she noted and I could probably get something written from the nurse as well, even though she hasn't noticed anything other than an increased pulse once when I was sick. With that information I'm hoping I can finally get some help as it's very scary when my heart is pounding on and off for hours. I worry that I am going to die or something. But I'm still kickin'!

BTW, is a Holter Moniter that big watch looking thing that one wears on the wrist and it records pulse and blood pressure and such, or is it much bigger? I can't exactly go lugging a big machine around work and campus, so I'm hoping it's small. And, if I had to wear one, is it something I have to stay in the hospital for, or can I still go to school? And also, has anybody with heart problems noted that they got better, or worse, from eliminating certain foods? I'm not sure if this is food related, but it would be nicer if it was.

It doesn't go around your wrist but it isn't really huge. My DD had to wear one for a couple days before she was diagnosed as she was having palpitations and her lips would turn blue which had the doctors worried about her heart.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 mushroom

 
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Posted 06 February 2012 - 01:25 PM

I am going to try and get in to see the doctor either this week or next, but hopefully this week. I'm just a bit apprehensive that this doctor will say that nothing is wrong and send me home. And I can't get in to see a cardiologist just yet, so I have to stick with a regular PCP for the time being. But I have a note from the trainer explaining in more detail what she noted and I could probably get something written from the nurse as well, even though she hasn't noticed anything other than an increased pulse once when I was sick. With that information I'm hoping I can finally get some help as it's very scary when my heart is pounding on and off for hours. I worry that I am going to die or something. But I'm still kickin'!

BTW, is a Holter Moniter that big watch looking thing that one wears on the wrist and it records pulse and blood pressure and such, or is it much bigger? I can't exactly go lugging a big machine around work and campus, so I'm hoping it's small. And, if I had to wear one, is it something I have to stay in the hospital for, or can I still go to school? And also, has anybody with heart problems noted that they got better, or worse, from eliminating certain foods? I'm not sure if this is food related, but it would be nicer if it was.


Okay, the Holter monitor is specifically designed to be worn while you are going about your normal activities. You will have a few electrodes attached which you can cover with clothes and the leads attach to the monitor which is about the size of a small paperback book which you can slip into a pocket. I wore mine when I was acting as a volunteer for a House and Garden home showing, that's how unobtrusive it is :D Not to worry - just don't go swimming :lol:

And yes, my heart related episodes were all initially related to food. Now that my heart has learned it can do this though, it chooses to do it at other times too. For me it most often happens when I go to bed when the abdominal contents move from the upright to the prone position and the bloating puts pressure on the heart and lungs and thence onto the vagus nerve. Prior to getting afib I used to get vaso-vagal syncope (fainting) from pressure on this same nerve, but then the response changed to afib somewhere along the way and I don't do the dramatic faint any more. You will notice in my sig. block a list of the foods I avoid. Of those, corn, soy and nightshades have been the worst offenders for me in setting off afib. These foods are all high in lectins, and I believe that lectins are responsible for the reaction (there are lectins in gluten as well). Here are some lectin links:

http://www.bmj.com/c...t/318/7190/1023
http://www.krispin.com/lectin.html

I will also look up the link for the Krispin Report and put that in here too in a minute.

I have mostly been able to control my afib up till about two years ago by avoiding those foods, but now I am finding that hypoxia (lack of oxygen) will bring it on and I have been summering at Lake Tahoe and the altitude is too much for my damaged lungs, and at night when my breathing slows it comes back occasionally. I do what is called "the pill in the pocket" treatment - when I get an attack I take a pill for rhythm control and it seems to work. I refuse to take it all the time (along with the Coumadin and baby a spirin the docs want to prescribe) and prefer to handle it this way. I might try for the ablation.

Good luck with the doctors because most of them have never heard of lectins and and won't believe a food connection. They need hard evidence and that is going to come from the Holter monitor. If you have any idea what induces your attacks you will want to do that while you are wearing the monitor (this is the one time you do want an attack :o ) :D I know that awful feeling, wondering if you will actually die or if it will pass. Strangely, there are people who are unaware they are in afib, which I find hard to believe and which is why I suggested ou check your pulse. I am often left writhing in agony.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#6 bluebonnet

 
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Posted 06 February 2012 - 02:28 PM

i dealt with this too and noticed a huge difference since going gluten free. i am not in the medical field but can tell you long story short after MANY tests they determined i had SVT. it feels like a-fib and i have sometimes remained for days with the condition where my heartbeat stayed upwards to almost 200 bpm. it was scary and i truly thought i was going to die. please check it out with a cardiologist. its not a life threatening condition (thank God) but its sooooo scary and dibilitating. if i accidentally eat gluten i find my heart skips and feels out of rhythm. and like the others said it just sort of kicks in high gear and then it pops back into a normal pattern. episodes can last a couple beats to several days.

i hope all turns out well for you. best wishes!
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#7 Buffheart

 
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Posted 08 February 2012 - 08:04 AM

Wooh! Doctors appointment on Monday February 13th! And the doctor sounds very good, so I'm excited:)
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#8 mushroom

 
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Posted 08 February 2012 - 03:49 PM

Wooh! Doctors appointment on Monday February 13th! And the doctor sounds very good, so I'm excited:)


Yay!! Let us know how it goes.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#9 Blue-eyed bandit

 
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Posted 09 February 2012 - 01:34 PM

Id love to know how it goes as well since I'm experiencing the same sort of symptoms. Mine starts up abruptly and leaves just as fast. It's like this boomboomboomboom regular beat??
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#10 Buffheart

 
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Posted 14 February 2012 - 12:25 PM

Went to the doctor yesterday and all they told me was to come back next week for an EKG and probably Holter monitor. That's about all because my pulse was normal while I was there.
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#11 Blue-eyed bandit

 
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Posted 06 June 2012 - 08:40 PM

What happened with you? My symptoms were very similiar to yours and I was diagnosed with NSVT and atrial tachycardia- devastated as I'm 27 with 2 children under 4
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#12 mushroom

 
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Posted 06 June 2012 - 09:04 PM

I am so sorry to hear about your diagnosis. What is your doctor recommending for you?
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#13 Blue-eyed bandit

 
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Posted 09 June 2012 - 08:42 PM

Absolutely nothing... Which is why I want to see an electrophysiologist for a second opinion. If it's nothing to be done fine, but I'd like to see if I'm a candidate for ablation.
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#14 mushroom

 
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Posted 10 June 2012 - 07:36 AM

Absolutely nothing... Which is why I want to see an electrophysiologist for a second opinion. If it's nothing to be done fine, but I'd like to see if I'm a candidate for ablation.


That sounds like a good plan - make sure you get a good one at a center that does a lot of ablations.

I am scheduled for ablation this coming Thursday. :)
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#15 Blue-eyed bandit

 
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Posted 13 June 2012 - 10:11 PM

Let us know how it goes. Tomorrow is your Big day so here's to feeling well!
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