Tag Archives: svt

That Damn Ticker

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So, my stupid heart is being stupid again. It is such an asshole sometimes.Stupid asshole.

I should start from Sunday night. I was having a weird scratchy throat. I didn’t feel sick and thought maybe it was allergy induced. Zyrtec made no difference so I TRIED not to worry about it and finally went to sleep a little after midnight.

I woke up around 5am sweating and feeling unwell. As I sat up, I realized my heart was beating too fast to count. Well over 150 bpm. I got some water and took my usual daily, tiny (12.5 mg) dose of beta blocker. I tried some vagal maneuvers and splashed cold water in my face. After a little while, it was clear that none of that was helping and that I needed to go to the ER.

I was put into a room and hooked up to machines within 10 minutes of arrival. My heart hovered around 150 – even after trying more vagal maneuvers (directed by RN). Doc came in within a few minutes and right away wanted to give me adenosine. This is a med given via IV that basically resets your heart. You feel as though your heart stops and from what I have heard, is an awful feeling…like you are dying. Needless to say, I did not want it. I have been terrified of that med since reading about it 12 years ago after my first sustained tachycardic event.

The doc was really pushing for the adenosine and seemed irritated that I wanted to wait. I knew I was able to convert (eventually) without it in the past and drugs always give me weird effects. So I was just not ready to try it yet. I will say, the RN seemed very supportive of my decision (both RNs and the tech I had were wonderful) and was super helpful.

I was given an IV and they drew some blood. She turned off the light for me as I laid there with my meditation app – trying like a crazy bitch to calm down. My rate would fluctuate between 130-150 for a while. As adrenaline surged through my body, I could not stop trembling. It was as if I was naked in the tundra. The shaking was insane. But I couldn’t control it regardless of a major effort. This is not great for my already pain in the ass muscle issues, by the way.

The new doc came in (she was also great) and we decided that I would take another 12.5 of my beta blocker. She also gave me a children’s dose of benadryl just to see if the throat thing improved (just to determine if it was allergy related). The benadryl did nothing but the beta blocker slowly decreased my heart rate over the next couple of hours. God, I am so damn thankful I didn’t do the adenosine.

All tests (including strep and urine) came back negative except for low potassium and phosphorus. Both of which can cause heart issues. However, the doc didn’t think that was the cause since they weren’t THAT low. Though she did make suggestions about taking Vitamin C to help my minerals absorb, because clearly they are not – which I already knew. I have not been taking Vitamin C, so I will be getting some today.

I do think the low minerals could cause this for me. I am super sensitive to any changes and I think I may have been a little dehydrated as well. This probably was enough to piss off my heart.

They said they think they saw some SVT in the beginning but most of my time there, I was in sinus tachycardia. This would be referred to as Inappropriate Sinus Tachycardia – since I wasn’t exercising or doing something to make my heart race. It all may have been triggered by SVT, however.

I was told to double my daily dose of beta blocker. This, I do NOT want to do. It makes me groggy (already exhausted as it is) and it affects my weight loss. Ugh. I just do not wannnnnnaaaa!!!

I will be seeing my cardiologist on Thursday. In the meantime, I am dumping the very low carb diet and adding high potassium foods. I think I feel better with fruits and more veggies. I wasn’t losing any more weight anyway. It is time to just eat a healthy, balanced diet – even if I stay the same size that I am, I think I will feel healthier.

I have had many heart issues in the past. Mostly with short bursts of SVT and PVCs. In the past two years, even those have been under control. Taking zantac for reflux has helped A LOT as that was a big trigger for my palpitations. I have been very proud of my heart up until yesterday. Right now, I am pretty pissed off and disappointed.

My last SUSTAINED (more than 20 mins or so) tachy event was about 12 years ago. So, I shouldn’t assume this is going to be “a thing” now. But it is difficult not to fall back into negative thinking patterns. My instinct is to catastrophize and assume this is the beginning of some fear filled rabbit hole. I need to really work at not letting this happen.

When this occurred 12 years ago, it literally robbed me of years – I was consumed with fear for so long. It took a lot of work to get away from that and I refuse to go back there. But I may need help. And I may have some brief set backs. So, I hope the people in my life can bear with me for a hot second.

We are going on vacation soon. We will be in the Dells. It is difficult not to worry about being away from a large hospital or going on a boat ride or drinking a bloody mary. I want so much to enjoy this trip. I cannot worry about my heart freaking out the whole time. So I need to figure out just HOW to make my brain work for me and not against me.

Today, I will rest, putter around the house and try to take it easy mentally and physically. I am slathered in benadryl and hydrocortisone creams because the damn EKG stickers give me a terrible (and ugly) rash. I am also drinking a glass of high carb vitamin C. And I am not feeling remorseful about it. I am bummed/guilty to be missing some events and meetings this week, but I gotta take care of myself. Priorities and all that.

Sigh. Stupid heart.

 

My Take: Dealing with Anxiety and/or Arrhythmia

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I belong to a couple of online support forums – one for anxiety and one for arrhythmias/heart issues. It is quite fascinating how the topics can often intermingle. Especially the anxiety and heart issues. If I had to guess, I would say that some form of anxiety/panic co-exists with a heart rhythm disorder probably 80% of the time – and that is a conservative estimate.

Some times the anxiety triggers the arrhythmia and very often the arrhythmia triggers the anxiety. It is a vicious, shitty cycle that spins with the velocity of a cyclone and it is very difficult to jump out. Let’s get off this stupid (not so) Merry Go Round, shall we?

When I do become involved in the discussions on these forums, I find I am most often giving support, advice or tips to those who may be newer to these experiences. Having dealt with this issues for several decades now, I have gained a lot of insight which I feel would have helped me earlier in my journey. So, why not utilize my crappy background to benefit others? There may as well be something good to come out of that suffering, eh?

There are several things that come up over and over again. So instead of constantly rewriting the same answers, I figured I would make a post with all of that information in one place. And this will be that place. Welcome, all. Have a seat. Relax. Have a listen and be well. This is for anyone who is dealing with anxiety or panic or an arrhythmia or all of the above. It could also be helpful to those who love someone dealing with one of these maladies.

Me?

I have lived with anxiety/panic for nearly 20 years to some degree. Maybe even longer. If you go to the My Crazy Brain category on this site, you will find a lot of posts on these topics.

I was diagnosed with SVT, PVCs and PACs about 10 years ago – but had it for many years prior. I was diagnosed with mild MVP a couple of years after that. All of these conditions cause symptoms that I can feel. Many people do not notice a thing and never even know they have it until it pops up on a monitor. But lucky me – I feel almost all of it. If you go to the My Crazy Heart category on this site, you will find quite a few posts about my heart issues.

One Bad Ass Mineral 

One thing I tend to preach about – perhaps to an annoying level – is magnesium. And let me tell you, I have my reasons. Whether you have anxiety or heart rhythm issues – magnesium may just end up being your best friend. It also helps many other ailments and it is definitely worth looking into. I can say with all honesty and certainty that supplementing with magnesium has made a very big difference in my life.

A couple of years ago, I was having hundreds of ectopic beats (PVCs and PACs) per day. Sometimes they would come every other beat. I was absolutely going insane. And, of course, it drove my anxiety into high gear – which only made my heart nuttier.

I searched high and low for solutions. I tried it all, man. Aloe gel, apple cider vinegar, black strap molasses, meditation – if I read about it, I tried it (for the most part). I saw several doctors. One wanted to perform an ablation procedure on my heart and another said that was a ridiculous idea. Finally, I spoke to a pharmacist/nutritionist here in Racine at Nutritional Designs Pharmacy. She explained to me how magnesium works and that I may just be deficient in the mineral since American diets are so lacking many of the nutrients we desperately need.

I soon found myself in Barnes and Noble with a decaf coffee drink reading The Magnesium Miracle by Dr. Carolyn Dean. Suddenly, a light went on and I knew I had to try what could just be a last-ditch effort to slow those horrendous ectopic heartbeats.

From the National Institute of Health website:

Magnesium is of great importance in cardiac arrhythmias. It increases the ventricular threshold for fibrillation. Sinus node refractoriness and conduction in the AV node are both prolonged. Main indications for intravenous application of magnesium are Torsade de pointes tachycardias, digitalis toxicity induced tachyarrhythmias and multifocal atrial tachycardias. Additionally, patients with ventricular arrhythmias due to overdoses of neuroleptics or tricyclic antidepressants may profit from i.v. magnesium. Monomorphic ventricular tachycardias and ventricular arrhythmias refractory to class III antiarrhythmics have been shown to respond to i.v. magnesium. Recent publications have documented that perioperative use of magnesium can reduce the incidence of arrhythmic events on the atrial and ventricular level. Oral magnesium has been used for many years in patients with symptomatic extrasystoles. Studies show that the incidence of extrasystoles as well as patients’ symptoms are reduced during oral magnesium therapy.

With the recommendation of the above mentioned nutritionist, I began supplementing with Krebs Cycle Chelates (I take one in the morning and two at night), a magnesium/potassium supplement (one at night – never go above 90mg of potassium without a Dr’s suggestion) and with powdered magnesium citrate (which I add to my tea several nights per week). They can be purchased online (see links) or look for a local health/supplement shop in your area. In Racine, I highly recommend Nutritional Designs.

It is very important to find an absorbable form of magnesium. The magnesium oxide you typically find at Walgreens only provides 4% of absorbable magnesium. This means you are paying to basically have your crap loaded with magnesium – it simply goes right through you and does not enter into your cells where it is needed.

It should also be known that typical blood tests cannot detect an accurate level of cellular magnesium. It can only tell you what is floating through your veins. This does not help you. The best way to know is to go by how you FEEL.

I also take a warm bath with epsom salts and baking soda (about a cup each) almost every night. This not only helps my heart and anxiety but also menstrual cramps (when I had a uterus), muscle and joint aches (its been a godsend since surgery) and really helps with my sleep.

How much magnesium should you take? Well, it isn’t a difficult experiment – but perhaps one you’d be best doing on the weekend. If you want to know how much is too much – you ask your bowels. Hey, I am sure it won’t be the first time you’ve talked to an asshole! So, you need to purchase an absorbable form of magnesium (magnesium only, do not do this with a complex or combo supplement. With combos – take the recommended dose unless directed otherwise). Make sure you get a dose low enough to take multiple pills (or whatever form you take) per day. Take a small amount each day. And then a little more. And keep increasing until you have loose bowel movements (yes, the runs). And hey, if you have been constipated – this just may be a relief! Once you get runny stools, you back off to the previous dose and continue on that dose as long as your movements are back to normal. That is the magic test to find out how much magnesium your body is needing you to take.

**I highly HIGHLY suggest trying magnesium if you are struggling with an arrhythmia. But – as always – please check with your doctor first. I AM NOT A DOCTOR and this is not to replace professional medical advice!!!**

More Heart to Heart

Along with my beta blocker (Metoprolol 12.5 mg twice a day – which helps tremendously for tachycardia), magnesium has truly changed my life in regards to my heart arrhythmia. I went from having 100s of ectopic beats (what I sometimes refer to as “skipped beats” even though that isn’t exactly accurate) to maybe 4. Some days I get more and some I get none. Right now, I am in what I consider a “remission”. I get maybe a couple per day. Next month I could have a week where I get 20 a day. But that is not frequent. There are people who live with 10s of thousands per day. This isn’t a cure and isn’t an exact science. We simply look for things that help our lives become more manageable.

I am sure you already know, but just in case – you should really eliminate stimulants from your life if you are dealing with an arrhythmia or anxiety. This means caffeine, energy drinks, decongestants and even some times ginseng or similar herbs. Be careful of anything you take as far as herbal remedies or medications. I once tried melatonin and my heart went bonkers. Same thing happened with valerian root. Both of these are supposed to be calming. Even sedating. But for me – opposite. You just never know.

When having any kind of local anesthetic/novocaine, make sure you speak to the doctor or dentist about your heart. Many of these medications have epinephrine in them and, usually, you can request for that to be left out. Epinephrine will most certainly make your heart tachy.

When prescribed a new medication, I always ask the doctor AND the pharmacist if it will have any effects on heart rhythm. Always better to be safe rather than sorry.

Someone asked me yesterday how I have gotten to where I am now as far as my acceptance with these stupid heart flip flops. My answer isn’t an easy one. And it won’t be the same answer each day. But what I can say is that this is a process and likely a life long one. Some days I can deal with it calmly and rationally. And other days I am scared and angry and want to throw something against the wall.

Each arrhythmia is different and each person is different. I can only tell you what has helped ME. Walking and trying to stay as fit as I can helps me. I hate exercise, really, I do. But I make myself do it because I know my body needs it. For some people, this may not be the case. It is all individual and needs to be discussed with your doc. Alcohol also makes me feel worse so I usually avoid it. For others, it doesn’t bother them a bit.

While I do have my little tips and tricks when it comes to dealing with this crap – none of that really helped until I came to a realization. And that happened gradually as I became more and more sick and tired of wasting my life.

I watched my father die in front of me at the age of 46 years old. I was 23. I know all too well how short life is. Even if we live to 90 – it is still very short in the grand scheme of things. And it flies by in a flash. I could no longer allow myself to waste away in a puddle of my own tears and fears (not to be confused with the band, Tears for Fears, which is pretty fucking awesome).

Fact is, I am going to die. I don’t know if it will be due to my heart or an accident or a toilet seat falling from a jetliner in the sky. And I certainly do not know when I will cease to exist. So, while I am here – I am going to do the best I can to actually LIVE. Waiting to die isn’t a life. It definitely is no fun. And it usually doesn’t include cake. So fuck that. And I don’t mean I am out there hang gliding or mountain climbing. I am still pretty toned down. But I no longer set up camp in that pile of shit pebbled with fear. I do things I can savor, even when I have to force myself.

Am I always able to keep it all positive like that? Hell no. But the older I get, the more I refuse to wither away until I am actually dead. So, I can sit home feeling my pulse all day long just waiting for that final thud. Or I can deal with my PVCs and other crap while I am spending time with my family or going to a movie or eating a tasty meal. If the thud is coming – I may as well be trying to enjoy myself when it arrives.

After All, I AM the Neurotic Housewife

I was always an anxious child. And that anxiety manifested, eventually, into depression and later on into panic. The panic came after the arrhythmia. I was undiagnosed and untreated for over a decade and this created the whirlwind of panic disorder. At my worst times, I was having more than one panic attack a day. In the past 9 years, I have had maybe 5 full-blown attacks.

I still deal with GAD and health anxiety. Much of the time, these aren’t much of an issue. But other times – I can go off the rails. Before my recent hysterectomy, my anxiety went into overdrive. I was obsessive and SCARED TO DEATH. But I got through it with the help of medication, meditation, loved ones and some CBT (cognitive behavioral therapy) techniques.

I Said Yes to Drugs

For years, I was a medicinal guinea pig. SSRIs, SNRIs, Tricyclics, Benzos and other oddballs tossed in for good measure – I tried almost all of them. They either didn’t work or the side effects were worse than the original problem. I ended up hating meds and refused to try them again.

But after my daughter was born, I became a wreck. As a stay at home mom, I was with her all day. And I panicked constantly that I would drop dead and she would be left here alone until Charlie returned at night. It was awful and no way to live. I was absolutely miserable. So, I finally broke down and agreed to take a daily medication for the panic.

I started taking klonopin and I swear it saved my life. The panic subsided almost immediately. I noticed no ill effects and, in 9 years, I have not had to increase my dosage. I believe the beta blocker and magnesium also help in that arena as well – but the klonopin has truly changed my life. I will happily take it forever if need be.

Now, it doesn’t eliminate any depression nor does it get rid of my generalized anxiety. It simply stops the panic and the physical/physiological symptoms of the anxiety. The thought processes that create the GAD have to be dealt with on a cognitive level. And I do work on that constantly.

In the Midst of Panic

People often ask what helps during a panic attack or extremely anxious times. Through the years when I did have so many, I developed many coping skills. Here is a list of what got me through those moments and what may help you too:

  • Distraction is key!! Count the pennies in your change jar, rearrange your living room, clean out your closet, alphabetize your CDs (do people still have CDs?), watch a funny television show, pull weeds, organize your bathroom drawer, make a grocery list – get your mind on something easy, simple, lighthearted and distracting.
  • Buy and read the book – The Anxiety and Phobia Workbook. This was my Bible for a long time. And I still pull it out during hard times. Do the exercises in the book!!! I cannot tell you how helpful this is.
  • Relax. I know, I know – this is the worst thing to tell a person who is panicking. But do what you can to manifest some relaxation habits. Take a bath (again, epsom salt!!), guided imagery meditations – you can find millions on YouTube, stretches, painting or crafts….find things to relax not only your mind, but also your body.
  • Move it move it move it. During a panic attack, your brain is releasing adrenaline and setting off your fight or flight instinct. The adrenaline and muscle contractions are what is causing those horrible physical symptoms of a racing heart, sweating, shakiness, dizziness, shortness of breath, chest tightness, muscle aches, etc. Exercise and moving your body will release that adrenaline more appropriately. Take a walk and notice the beauty around you. Try out a yoga video online. Jump rope. Swim. Move your body in a way that feels comfortable to you.
  • WRITE!! Journaling helped me so much. I would use the same notebook each time. I would just keep writing until I started to feel better. I wrote whatever I was feeling, I wrote gratitude lists, I wrote about my day – anything. And not only is this  releasing your feelings – it also provides proof for you the next time that you have been through this before and you SURVIVED!! You can clearly see that (for example) last Tuesday you were also certain you were about to die and had chest pain and had tingling in your legs…and that you lived through it.
  • Call a trusted friend. Now, while this may be extremely helpful, it can be tricky. You do not want to become a constant burden to the same friend every day. It cannot always be about YOU and how YOU feel. You will drain the friendship – even the great ones. You must make an effort to gear the conversation toward THEM. Ask them about their day and their families. Show them you care and appreciate their time. It not only will strengthen the friendship, but it will also help you escape your own shit for a while. Try not to be an energy vampire.
  • Help someone. Anxious/depressed people can become pretty self involved at times. Some more than others. It is important to get out of your own mind and a great way to do that is to help others. Volunteer. Visit a nursing home. Make cookies for a sick friend. Write cards of thanks and mail them. Walk a neighbor’s dog or mow their lawn. Help out at your local food bank. The options are endless. You will feel better and you will help someone else feel better. Win win, man. Also, you may just get a new perspective that helps you see how good you have it. As sucky as anxiety disorders can be – there are problems that can be much more devastating.

Some People Just Don’t Understand

And they never will. If they have not felt this themselves – they just can’t truly get it. There are some great people who really try to understand and are compassionate enough to be there for you even if they don’t know what it is like. These are the people you really need to appreciate, pick flowers for and smother with kisses. These people are rare and precious and deserve praise.

It is not easy to be the loved one of someone experiencing this mental bullshit. It sucks for them too – please remember that.

There will be people in your life who treat you like a disease. They will talk to you like a child and roll their eyes when they think you aren’t looking. They will never attempt to muster up an ounce of compassion and they have no tolerance for your emotions. They will think you are too sensitive and need to get over it. They may be close friends, relatives, clergy, teachers and people you’d expect to care. But they don’t. And there isn’t a goddamn thing you can do about it.

You can let it get to you. You can over explain or try to change for them. You can hide your real self. You can allow yourself to be constantly disappointed and heartbroken. Or you can simply say goodbye. I will let you guess which option is healthier.

In Closing….

While I could go on and on all day about these topics, I must end it at some point. And like I said, I have written extensively about all of this in the past. Feel free to search this site (almost a decade of blog posts here). And if you would like to discuss this or anything else about these subjects – please feel free to comment!! Start a discussion.

So, as a re-cap:

Magnesium is wonderful. Klonopin saved me. Beta blockers help the heart and adrenaline surges. Different meds work differently for each person. Speak with your doctor, be patient and give the med a chance. But be aware and listen to your body. If something is making you feel horrible, say something and make them listen!!!

Distraction is key during panic. Helping others is one of the best ways to overcome your own anxiety. Exercise is necessary. Stay away from stimulants. Read The Anxiety and Phobia Workbook. And remove toxic people from your life.

Most importantly – live. This is your one chance and it is passing you by RIGHT NOW. Live the life you are so afraid to lose. Shit, you may as well make the fear worth it, right?

Answers! A Second Opinion Success

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So, last night was down right awful. I was having skips like never before. Every 4-10 beats for quite a while and then every few minutes for the rest of the night. This sent me into a straight up panic attack. I have not really had a full blown panic in years and let me tell ya…they sure don’t get easier with time. And this was WITH an extra klonopin. I was up until about 1am and with the help of a couple great people online, my husband and mother and some ridiculous sitcoms…I was able to finally settle down and drift off to sleep.

When I woke up, I felt a few and was pretty anxious, but I did what I had to do because my appointment was at 10:45 and I could not wait a second longer.

I picked up  my records from All Saints and headed to Burlington. My mom met us as soon as we arrived and we decided she would come in with me. She laughed and made fun of my OCD organizing of my records. I had them in a binder according to date and test. Hey! I thought I was being pro-active and considerate!!

The nurse called us back right away and she couldn’t have been nicer. Their staff is quite remarkable. In fact, the woman running the department called me on my way out there to make sure I was okay and all set. I mean, clearly, they did this because they know my mom…but still. It felt good to be treated so well. And I still say that the nursing staff at the All Saints EP office is also very nice and compassionate.

The RN did her RN stuff…BP was what it always is….107/60-ish.  Heart rate was 80-ish. I was calm. I always feel much better once I step foot into a doctor’s office. Always.

She brought my info out to the Dr. so he could review. A short time later he entered the room with a very friendly disposition. He has a dry sense of humor and is very straight forward. I really liked him a lot. He kept calling me young too which always helps 🙂

So…here are the basics…

  • I won’t say exactly what he said about the EP suggesting an ablation…because I don’t think he would want that in writing. But he did say that there is no way he sees any need for me to have one. Says there are risks and it may not even work  and it just is not warranted. Yes, I started to cry. It was just such a relief.
  • He said that I am just one of those people who feel everything with my heart while there are people who would never feel these things.
  • He did say there IS something there. There are events happening with my heart, but they are not anything to be worried about. He said as long as I am not passing out or feeling dizzy when they happen – it doesn’t matter how many I have – I should try to go on with what I am doing. He said I can run (but not to because its bad for the knees lol), scuba dive or sky dive if I wanted to. I assured him I will not be doing any of those things regardless of heart symptoms 🙂
  • He saw no issues with any meds or vitamins I have been taking.
  • He said having more PACs/PVCs right before menses is very common but he didn’t know if uterine fibroids make it worse (I read that they release more estrogen). I will ask my Gyno about that and it may be the push I need to get that hysterectomy.
  • I asked if I could drink. He said that people who drink live longer than people who don’t. “At least, that is what I tell myself every night,” he said tongue in cheek. But he did say that it can be a trigger for some people so if it is, to simply stop.
  • He said everything he saw on my many tests amounts to PACs, PVCs and some possible SVTs. He said none of it is something to worry about. He said nothing showed any signs of a dangerous arrhythmias such as Afib, V-Tach or WPW.
  • He said I could be the most zen, buddhist-like person in the world and I would still feel these because that is just how my body is. But he did say he thinks stress and anxiety can make them worse or last longer.
  • I asked if there is any reason to believe that an event like the one that sent me to the ER 8 years ago may never happen again and he said sure – it may never happen again.
  • My potassium was low when I was in the ER that day. I asked about that being a possible reason. He wasn’t sure but he did say he likes people to have about a level 4 (mine was 3.4) but that people in good shape are typically lower. He said it would be fine to take a potassium supplement if I wanted. I asked about magnesium and he kinda shrugged it off but said, “Sure, if you wanna.”
  • I asked if there is anything I can do when I am having a really bad time like last night. He said I could take a little extra of my beta blocker. In fact, that was his suggestion at the end of the appointment. Right now, I take 12.5mg of metoprolol twice a day. He said to double it and see if that helps. It seems he thinks it might. When I first started this med, I was taking 100mg a day. So, I have no problems with this. It will probably make me more tired and could indeed make it harder to lose weight, but at this point I don’t care. I cannot live feeling the way I did last night.
  • At the very end, I asked him what he would say to his own kid and he said, “I would tell them to suck it up.” LMAO. I know it sounds like he is a hard ass, but really he isn’t. He made it clear to my mom that this is very real and I am not crazy. It is just something I have to learn to live with. And he just does it with a sense of humor, which I very much appreciate.
  • He did say that if he started feeling these he would be paranoid too. Then he made the comment, “Just because someone is paranoid doesn’t mean there isn’t someone out to get you.” So he is sympathetic to how this can really mess with someone. He said that he thought biofeedback was a crock of shit until he tried it one day and said it would be worth looking into. And he wants me to make sure I am seeing a therapist who knows what they are doing for my anxiety (and she does…she’s great).
  • He said that an ablation may likely not even help the PACs/PVCs and since those are my issues – he saw no reason to risk an invasive procedure. He said there are many steps to take before trying something like that.

 

So basically, he said this sucks…we don’t know why it just happens to some people or why only some people feel it. He said as it is now, there is nothing he sees which needs ablation. He said we can work with meds for comfort, but he’s like to stick with beta blockers because they are very benign compared to other meds. And that I need to work on simply dealing with these. This is indeed pretty much what I was hoping to hear – aside from some miracle instant cure. I am very happy with the appointment and the doctor. Now, I just have to work on believing him and going on with my life….

 

As for my holter monitor results…in 46 hours I had the following (Dr. said none of this is concerning):

205,581 QRS Complexes – I have no clue what this means but much of it could be artifact (leads being disrupted, tape falling off, etc.)

91 Ventricular Beats – I believe these are the PVCs

6 Supraventricular Beats – I believe these are the PACs

Ventricular and Supraventricular Beats were all isolated. No couplets, bigemy or runs

Minimum Rate – 49Average Rate – 73

Maximum Rare – 117 (and I was even exercising lol…clearly not very hard)

 

 

My plan of action:

Today I am picking up a book from the library which someone recommended to me called Hope and Help for Your Nerves by Claire Weekes. I ordered 3 other books: Peace from Nervous Suffering, Deadly Emotions and Power of the Subconcious Mind. All of these are suppose to help a person understand the body/mind connection. If it is true that my anxiety is making these ectopic beats worse, then I want to learn how NOT to do that. They will always be there….but I don’t want to make it worse.

I am going to ask my therapist for suggestions on a biofeedback practioner.

I am going to up my dose of beta blocker to 50 mg a day.

I am going to try meditation and relaxation exercises on a daily basis.

I am going to live my life.

 

Thank you to everyone who has helped me though this. This isn’t the end of the road by a long shot. I will need A LOT of help getting over and getting used to this shit. But I really appreciate the people who have helped thus far. You know who you are….

Heart Anxiety – I Cannot Go Through This Again!!

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Boy am I pissed. I feel like I put the car in reverse just to go back to that pit was I able to drive from seemingly long ago. I know it is unhealthy and the worst thing for me…but I cannot seem to get my foot off the accelerator.

GAD – Generalized Anxiety Disorder – is something I deal with on a daily basis. This is no shock or surprise. I am in therapy for it and have been gradually getting better at dealing with it. But the panic, terror and constant fear is something I thought I had left in the dust several years ago. At one time in my life, I was having severe panic attacks almost every single day. That is when I started taking klonopin and since then – I have been pretty ok. No real full blown attacks since. But sadly, I feel myself regressing.

The fear has reintroduced itself to my life and I am trying SO hard to squash it. Just like it was in my 20s, this is all sparked by my heart symptoms. This past week, my PACs (feels like a skipped beat…very noticable) have been much worse than normal. They are always worse the week prior to my period…but this month has been more frequent than usual.

I am letting this consume me. It has taken over. I still try to be normal…cooks meals for the family, clean, shop, even exercise (tho much lighter). But all the while I am filled with anxiety and fear and worry. I am living in a world of what if-s and why me-s.

I have an appointment tomorrow with a cardiologist for a second opinion. Read HERE for more info on that situation. I just learned that all my records may not be ready on time and I am now really pissed off. I feel it is very important he has all the tests to read over. Charlie took off work to bring me and I NEED this to be tomorrow. I cannot wait longer. I have made it my goal that after this consult, I will get back to my normal life and leave this behind. I promised myself. So this needs to happen tomorrow.

My mom works with this Dr. and thinks very highly of him. His staff was excellent in getting me in whenever I wanted and are eager to help me. I feel good about going. But I am worried I won’t have all the info he needs.

I should also say that the staff where my current EP is is also great. They have been helpful and understanding. But I do fear the Dr. may be pushing for a procedure I may not need. I need to be sure.

By this time tomorrow I want to be calm and reassured. I want to laugh and enjoy my life. I deserve it damnit. I will NOT live like this again. Too many years were wasted on constant anxiety attacks…constant terror. I will NOT do that again.

Stereotaxis/Magnetic Navigation Ablation

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If you FF to about 14:00 they actually show the procedure on someone with afib. Amazing but scary. This is what my electrophysiologist wants to do to me basically….

Rockhopper.tv – Programmes

Also – here are some patient stories from the US which are pretty remarkable. But still scary.

Stereotaxis – Patient Stories

What do you know/think about this new technology?

Heavy Decisions…Having a REALLY Hard Time

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Today I had my appointment with my EP (electrophysiologist) to follow-up after an event monitor found several events including PACs and a run of SVT. Some things were reassuring, some confusing and some upsetting.

She drew pictures and explained to me what she thinks is happening. She called these irregular events – ECHO BEATS. This is a term I have not heard and cannot find much about it. She is polish and perhaps they use different terminology?? She said echo beats were the beats that precede an SVT event. On my results was a run of 7 SVT beats. She showed me the early beats (which I think are the PACs) on the graph. And she asked me, “You must be really sensitive, huh?” Ummm yep!! Telling you, I feel EVERYTHING.

In her picture she showed a loop and said the beats were getting trapped in this loop created by an extra pathway. I have done some reading online and cannot really tell if this would be AVNRT, AVRT or AP. While showing me the readout (ekg-style), it all just looked like PACs but in the SVT event it looked like a bunch of PACs right after one another.  I never felt the fast rate of the SVT, only the pause after. I always feel the pause…it simply feels like your heart stops for a second.

Because I didn’t feel the fast rate, we want to make sure I am not having more than we think so I am wearing a lovely Holter Monitor for 2 days. No shower or bath ALLL weekend. SUCKYYYY!!! I am addicted to hot baths in the winter. I will also not be leaving the house until I can take this off on Sunday. And she doesn’t want me to take any of my anxiety medicine so that she can see it at its worst. GREAT! This will be a blast. (sigh)

I had a bad night last night and the anxiety med helped I think. It was skipping every 30 seconds for 10 minutes straight. I got so panicked that I started shaking and got super cold. I haven’t felt like that in years.  Anyway…

She showed me the wires/caths she uses for her EP Studies/Ablations. She told me the name, but with her accent, it was hard to understand. Something like STEROXIS SYSTEM or something like that. She showed me the ones most hospitals use which were stiff and hard to move compared to this new kind which are more like spaghetti. They are magnetized and they can control with within millimeters. She said because of those, there is much less chance for error.

Q&A…

  • What is the success rate for ablations? With the problem she believes I have, she said 99%. She said if the extra pathway is too close to my natural pathway, she simply won’t do the ablation.
  • What is the worst thing that can happen to me if I do NOT get an ablation? She said it is POSSIBLE (about 11% I think she said) that I could end up with AFIB. If that happened, I would then get an ablation, but the success rate might not be as high as it can come back. AFIB can have a risk of stroke or heart failure…eventually…MAYBE. She promised that none of these would cause sudden death. But she also knows how scared I am…so is she not telling me things to stop me from worrying???
  • Why have the ablation? Biggest reason is quality of life. She must have noticed my tears and phone calls and huge list of questions. She can see these are affecting my life and making me unhappy. She said, “Why on earth live that way if I can fix it in a couple hours and you will never have to see me again.”
  • Would I be sedated for the procedure? She said I would be asleep the whole time. I asked if being sedated would make it hard to trigger the problem (they need to do this in order to fix it). She said, “Oh, I will get it going, don’t worry.” I told her I have a huge fear of adrenaline. She just said…you will be sleeping, you won’t feel it.
  • I asked if prior pot use caused this. She said no. But that it was good that I quit because it isn’t good for my mind with the anxiety which makes the beats worse.
  • Can I have a glass or two of wine? Yes, but only white wine. They are finding that red wine can be a big trigger for many people. Weird. And not a lot, only a glass or two.
  • Do hormones play a role? YES!! And it surely WILL get worse the closer I am to menopause.
  • Is this genetic…could I give this to my daughter? No.
  • On the event monitor, every event was recorded by me…it never automatically went off due to a dangerous event.
  • How does the Beta Blocker help? Probably more for anxiety…it slows the heart rate too.
  • When should I worry or go to the ER? Never. (LOL…seriously??!!)
  • Can stress cause this? No, but it makes it worse.

So, she is REALLY pushing for this EP Study/Ablation. She said she cannot be sure what kind of SVT I have until she does the study. It would be done in Milwaukee. She acted as though it was a no-brainer. Although she did say I am in no real danger if I do not get it. She said it really is a quality of life thing. And she thinks I wouldn’t be as fatigued if this was cured. I have been majorly fatigued since my teens and they have never been able to tell me why.

But there are risks to the procedure which include stroke and death. Those rates are pretty low, but WHAT IF?? Is some discomfort and anxiety a few times a month worth possibly dying or having to have a pacemaker???

And let me kinda explain this ablation thing to ya…

I would be put under with a general anesthetic. I have had this once before and it scare the piss outta me. And this time would be worse because I would have to be intubated (I did not have to be last time because it was so short). Then they shave your peek-a-chu and make a couple incisions in your groin area. Through those incisions they thread wires up to your heart. They then put adrenaline (or a like substance) into your IV to make your heart go into the irregular beat. Once they can map the beats and see where the issue is, the then burn it with the tip of the wires…essentially burning a scar onto your heart where the extra pathway is. UGH. It sounds so awful.

I have a huge decision to make and it scares the piss out of me. I will see what this Holter reports probably in about a week. I will then get a second opinion from a cardiologist at a different hospital as well. I am doing that only because I know that with specialists (an EP is a specialist) – they often are more eager to perform their talents. I’d like to see what a cardiologist has to say and since my mom kinda knows him through work…why not, right??

Okay. So…I would LOVE to hear what you have to say. I am sorry this is so long. I hope I didn’t leave anything out.

So, what should I do? I really need input, advice, etc….

By the way…thanks for listening!!

 

UPDATE – I found the info on that new cath system she was talking about – http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1586159/

Bleep, Bleep, BLEEEEEEEEEEP (and other heart talk)

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I have discussed my flip floppy, fast, crazy fucked up heart issues occasionally throughout the years. HERE is one blog…and HERE is another. Those posts go over all the basics as well as some of the fun, fun detail.

Long story short…

In my 20s my heart would flip flop and sometimes race. I made several trips to the ER (ER stands for Errrrr, I don’t know whats wrong with you…). I would be patted on the head, given a xanax and told I need to see a shrink (as if I wasn’t already a mental patient).

8 years ago, I ended up in the Errrrr again with a sustained heart rate of 170-180 for over 4 hours. Normal rate is 60-90. It started out of nowhere and my blood pressure dropped to 50/30 (my normal is about 110/70) at one point and I thought I was a goner FOR SURE. And the looks on the RN’s faces were pretty scary as well. It was all very horrible and I don’t think I ever really got over that trauma. My rate finally came down when given a beta blocker. I have been on beta blockers ever since.

I saw a Cardiologist the next day and she diagnosed me with SVT (supraventricular tachycardia) and said I have probably had this all along…that I probably never really had text book panic disorder. I had weeks and weeks of terror. I was so consumed with fear. Also during those weeks, I became pregnant. Coming to terms with the pregnancy and its symptoms as well as getting the right medication dosage…it was really rough. But I got through it.

Not long after, I saw an EP (electrophysiologist) who specializes in arrhythmias. He looked at my chart and all my test results. He then said, “Ahhh, you probably don’t have SVT. Take your medication and don’t worry. You don’t need an ablation (something I was VERY worried about).” HERE is a description of an ablation procedure. Seriously, it sounds god awful.

I begin to be more and more at ease. The medication was working and aside from some occasional flip flops (which are technically PACs).

About 8 months ago (or so) I started to feel more PACs before my period. And it was making me anxious again. I made an appt with a new EP. She set me up with a 30 day heart monitor. I wrote about it HERE. I got the results back on Monday. Not cool.

I wanted the test because I was hoping it would finally ease my mind. I figured they would just tell me they are harmless palpitations (like they have said in the past) and to stop worrying. And while the news wasn’t HORRIBLE, it wasn’t what I hoped exactly. The RN said that I had a couple PAC Couplets (which mean 2 in a row) and a 7 beat run of SVT. She mentioned having an ablation if they were starting to effect my life. So, two things I did NOT want to hear…SVT and Ablation.

I scheduled an appointment with the EP just to talk. That is on Friday. And then I cried the rest of the day. I was just so disappointed. I was really hoping that I could possibly even STOP my beta blocker. They impede weight loss significantly and make me tired as well as depressed. I hate the thought of taking them forever.

I have had a couple of days to sort things out…do some reading and my mom talked to a cardio employee at her hospital. I do feel better. I realize now that the news could have been so much worse and this really isn’t THAT bad. And what it all comes down to is acceptance. I need to accept that I will indeed one day die. And I will never be able to control when and how that happens. No doubt, it is still my biggest fear/obsession – but I need to work on it because it is taking over my life with worry. I also need to accept that as we age (ugh…what a fucked up term), shit is simply going to happen. Whether it is cancer, diabetes, heart disease…SOMETHING…we cannot stay perfect forever. I have to just deal with it the best I can. And if that means one day having to have wires zapping my heart…well…then that is what it means. (sigh)

I will go to my appointment on Friday with a list of questions and a request for one more test (Holter Monitor, which I think will be more appropriate). If I am unhappy with what she says, I will have a second opinion with the Dr at my mom’s hospital. After that, I will learn to live with what I have to live with. Period.

And that is my heart to BLEEP heart for today. Talk at ya soon.

 

 

Heart to Heart

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Today I read a story that re-sparked anger which never truly resolved. This story reminded me of my own but with a far more tragic ending. Not only does it leave me feeling grateful but also furious that such a terrible thing had to happen to such a young guy with so much promise…or to anyone at all for that matter.

I didn’t know Dillon. He was a year older but attended the same high school. We had a mutual friend and through him I think I met Dillon maybe twice, sharing only a few words. He was a very popular guy – clearly well liked.

I had heard years later that something happened to him and that he was in some kind of coma. I never knew anything more than that until today when I learned of his passing ten years after that fateful event. This story was written by his sister and I read it HERE

 

On April 28th, 2001 Dillon, a very active young adult and avid sports fan, spent a normal day with friends. They played basketball, grilled burgers, and watched a play-off game between the Bucks and the Magic. When the Bucks/Magic game went into overtime that night, Dillon collapsed. His friends thought he was choking or perhaps having a seizure. His friend Tony attempted CPR in an effort to help Dillon while Bobby called 911. Tony asked, “Dillon, are you okay?” Dillon replied with, “No.” That was the last word he ever spoke.


When the paramedics arrived they shocked Dillon 11 times to try to revive him. He had gone for a period of up to one half hour without oxygen but was successfully resuscitated. He was stabilized and put on a ventilator in the intensive care unit. My parents were called.

When this event took place I was studying in Argentina as an undergraduate student. My parents called me to tell me that something terrible had happened. I first thought that Mittens, the cat, had died but then my thoughts turned to the possibility that it could be my grandmother. Never could I imagine that the news was about my young, vibrant, full-of-life brother Dillon. Upon hearing the news I cried uncontrollably for what felt like forever. After a horrendous evening of trying to find a way back to the U.S., I boarded a bus which took me to an airport about three hours away. I then took a plane to Buenos Aires, a bus from the national airport to the international airport, and then finally I took one more plane that would allow me to arrive in Racine, Wisconsin, where Dillon was. The trip lasted for 24 long, agonizing hours.

My brother Sean and his wife Tiffany picked me up from the airport in Chicago and brought me straight to the hospital in Racine. Once there, I found my father pacing and crying in the parking lot. After holding each other for a short while, my father brought me to the ICU where I found my mother and Dillon’s girlfriend Mame. My father led me into Dillon’s room where I witnessed my big, strong brother relying on tubes and machinery for life. I will never forget that moment and how the impossible became a cold, tortuous reality that my family would endure for the next 10 years, three months and two weeks.

Dillon was soon weaned off of a ventilator. He was given an EKG that his regular physician should have ordered weeks before when Dillon went to him and complained of a racing heart. The EKG showed that Dillon had a very rare congenital heart defect called Wolff Parkinson White. A simple ablation could remedy such a condition if it is detected before one suffers the horrific symptom of sudden death. Dillon’s doctor had told him not to worry about the symptoms he was feeling and to try to drink less coffee.

After a ten-year struggle, last week my family finally let Dillon go. He passed away the evening of August 10th, 2011. In his honor, we are requesting that Dillon’s friends and relatives donate to “Screens for Teens.” We know that a simple EKG would have saved Dillon’s life and allowed him to marry the love of his life, have the children he always wanted, and permitted him to keep on laughing, playing and loving as he did every day until age 27 when this horrible event took place. We hope to save other families from experiencing this tremendous sadness through these donations.

Thank You,

Caitlin

I have spoken in the past about my cardiac issues and history. In brief, I will summarize.

Beginning in my early 20s, I began having the feeling that my heart was racing. I would lose breath and a couple of times, I fainted. My arms would tingle and I felt a sense of doom. Unfortunately, these symptoms mimic a panic attack and for over a decade, that is what they insisted I was dealing with. One particular time in the ER the nurse had to check my heart rate several times because it was so fast. She kept asking me if I was on anything. I certainly was not. By that point I had even quit coffee and soda – anything to stop the symptoms (also quit smoking cigarettes and pot). I was clean as a whistle yet my heart was beating like a rabid drum. Each time Invisited my Dr. or the ER, I was patted on the head, told it was anxiety and given a xanax.  I was miserable and eventually I did INDEED develop panic and anxiety disorder.

At age 28 I was home doing the dishes and felt a familiar flip flop in my chest. Only this time directly after the flip flop my heart started beating too fast to count. I took a xanax, tried all the anti-attack tricks but nothing helped. I decided to drive myself to the ER (stupid, don’t EVER do this…get a ride or call 911 – it is just not worth the risk, I could have easily passed out). When I got to the hospital my heart rate was between 170-190ish. They got me into a room and hooked up right away. I had at least one – usually 2 – nurses in my room with me the whole time. They took several tests, tried different vagel maneuvers but there was no answer as to what or why this was happening. This rate sustained for over 4 hours. At one point my BP dropped to 50/30 and the look on the RN’s face scared thee shit outta me. I really truly honestly thought I was about to die. It was the single worst moment of my life and I have had a number of horrible moments.

Finally the Dr. decided to give me a beta blocker and within 20 minutes my heart started to slow. It felt as though I had been pumping iron for a week straight. I was SO sore. I was sent home wearing a holter monitor and told to see the cardiologist the following Monday. Within 15 minutes of my appointment, she told me I had SVT  (supra-ventricular tachycardia). She insisted it was benign, though scary. She said I should remain on the beta blockers indefinitely. She ordered more tests which all came back normal. She said many people with SVT and similar arrhythmias are misdiagnosed with anxiety/panic because the symptoms are so similar. But after 10+ years, wouldn’t you think SOMEone would listen??

It took me a LONG time to come to terms with this condition. I became pregnant 2 weeks after my diagnosis which made things harder (with the hormones) but after MANY calls to the cardiologist, a lot of reading and getting used to the med – I was able to eventually calm down. By this time I really DID have anxiety and to this day it has not gone away.

This past week I went back to the cardiologist – an EP (electro-physiologist) – for a check up because my flip flops (AKA PVCs) have increased lately. She was able to reassure me a bit and I have 2 tests I will be taking this Monday – an echocardiogram (I had one about 7 years ago) and a 15 minute EKG (never have had one of these, only regular EKGs). If those are both normal, which she seems to think they will be, she says I will be good to go and perhaps will just need to take more BB when symptoms are worse. She said it is a quality of life issue but not to worry about sudden death.

Ever since my diagnosis, I have had this OCD fear or sudden death. Learning about SVT online had its bad side. I also learned of a bunch of other things I thought I might have – things like WPW, the syndrome which struck Dillon. My uncle also had WPW but very luckily was able to have it ablated before something happened. I have not had any fears about cancer or illnesses – pretty much just dropping dead with no warning. I have gotten some control over my fear, but it is always underlying somewhere in there.

Anyway, I still have trouble trusting medical professionals. And the phrase ‘you’re fine’ is VERY difficult to believe. Years were wasted being worried and feeling like shit. Who knows if being untreated for so long put extra stress on my heart. I don’t think I will ever get over being ignored for so long.

Yet, I am grateful. To see what happened to Dillon is heartbreaking and eye opening. We need to live our lives while we have them. We need to stand up for our health. And we need to be grateful for every moment we have.

Please consider giving to this very necessary and worthwhile cause – Heart Screens for Teens – what a wonderful idea and organization.

I want to extend my deepest sympathies to Dillon’s family and friends. Their loss and pain is unimaginable to me. What they have been through this past decade – my heart goes out to them all.