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Living With Wolff-parkinson-white (wpw) Syndrome

I have been diagnosed with Wolff-Parkinson-White (WPW) syndrome and for the past year my symptoms have become worse. I have not been able to exercise because I get very severe symptoms such as; heart palpitations, shortness of breath, dizziness, chest pain/cramps, chest and head tightness/pressure. I have also been experiencing (sometimes);  pain & numbness in (mostly) my left arm, neck, jaw & sometimes stomach, nausea, severe lightheadedness/fatigue, sudden heaviness & weakness throughout my body, and sudden heat and flushing or cold sweat, and have trouble talking-extremely slow (and thinking) and very slow body movements...everything seems to be moving like in a slow motion movies. I was taking Metoprolol, and then Sotalol, but neither worked. Now I am taking Multaq, but have not seen much improvement either.  :(
This all has been very hard and irritating to live with lately...any advice?
Thanks!
tanja386 tanja386 36-40, F 65 Responses Jul 2, 2011

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I was diagnosed with wpw about a year ago. Im 22 now. I went for an ablation about 3 weeks ago but then the doctors found that there is complications so they did not procede with it. The doctor told me that if the took the chance at doing the procedure chances would have been 80% that i would have had to get a pace maker and he feels i am too young. He told me to go on with my life as normal as possible and first have children. But now i feel so helpless. I wasnt given any medication and now have to live with constant pulpitations which freak me out every day. But since i came out of hospital it feels like the pulpitations have become more frequent. None of the sites really tell you what you should stay away from doing. So can anyone maybe give more advice. The doctors didnt give any 'what not to do's'

i am 63. i was diagnosed with wpw after wearing a halter monitor for a few days when i was 28 or so. wpw was just a fluttering feeling from my heart... i used to bang my chest as a gorilla would to get in back in synch (it never worked but made me feel as though i was doing something/in control/etc.

but in the past several years, fluttering episodes also include near fainting. as i was driving along a long straight road i began to flutter and then waves of fogginess began occurring. i could see that i was coming to a light... it was currently green. as the "fogginess" became more pronounced, i was hoping the light would turn red. it did and waves of darkness, a very light head (almost enjoyable) occurred and lasted only for the duration of the red light.

all of that (the fluttering, the almost total passing out, the whole sequence of going towards passing out) was tolerable. however, most recently the flutter is not so distinct... it's really just a tightness. and, for several times my jaw is tight and my throat, too. it's very uncomfortable... not one thing good about it. it obviates any, even slight, physical movements/exertion. it all actually hurts. plus, whereas in the past 30 years the whole "event" was done and dusted mostly in less than 5 minutes, these more "hurtful" strikes have lasted over an hour.

i play tennis and mostly these more punchy events have occurred at the courts. tonite as i was driving home from the courts, i could feel the dull ache in my chest start to emerge. it was slight but recognizable. i was hoping i would make it home (about 15 minutes away) before the process evolved. i should say that these new attacks do not include fainting... just a debilitating tightness/pressure in my chest, jaw and throat (oh, for the good ol' days of near fainting) as well as a faint headache that encompasses my entire head (ie not a small area(s)... my entire head)

i have had examinations but they come back "nothing abnormal here". this includes the injection of dye and having my heart stressed by an injection vs. an actual treadmill. all of these tests documented no abnormalities.

the only thing i can do while under these more recent-type attacks is stand bent over or sit down... in an effort to return things to normal, i have actually tried hitting a ball/continued movement... it doesn't work. i have discovered that even after the attack subsides, it's not a good idea to continue with any exercise.

i was told an ablation can return me to my "real" self and that i will be amazed at the difference. i was also told that around 50% of all people having this done end up with a pace-maker. i can't bring myself to do it. are there drugs that can subdue this thing or reduce frequency (i don't get these frequently maybe 5 times a year... might be more) thank you very much.

Hi
My son used propanolol when he was young to stop the attacks. He had attack that lasted a week as his heart kept tripping. They put him on this medication, to be taken every 6 hours. After 2 years he didn't have any further attacks and was taken off the meds.
Maybe ask about this medication. It is called Propanalol in the UK, but if you are in America it might be called something different?

I am now almost 40 years old. My WPW was not found until I was 29. The past ten years have been a roller coaster. I have had 3 ablations, 1 for WPW. 1 for AVNRT, and 1 for abnormal arrythmia and now I have had a pacemaker for 5 1/2 years. I still have a junctional rhythm in the lower heart chamber, prolonged QT, and vasovagul syncope. I don't sleep well and am always fatigued. I am 89% dependent on my pacemaker. I do not have to take any medications for my heart, but I do for anxiety and sleep. They need to do another ablation, but they don't want to because you can do too much to the heart and cause it to shut down. It has been a long 10 years, but I have a 2 1/2 year old healthy daughter and am taking life one day at a time. I normally end up in the hospital at least once a year, but they are at the point they can't do anything for me. This is just my cross to bear. God will see me through. Good luck to you all. You are not alone. Your in my prayers
dudleync

My daughter is 9 and we found out last yr she had WPW with SVT, she had the ablation and was great for 2-3 mos. She started having symptoms while swimming and they are more frequent now with any exercise. When we took her last yr the WPW didn't show up on the EKG she just had the SVT, she also had atrial flutter. This time she doesn't have SVT but a heart rate of 200-250 and they say it's sinus tachycardia, has anyone experienced this after ablation? When she experiences an attack she turns white, gets dizzy, shortness of breath, and has fluttering and severe chest pains. It freaks us out and having another surgery is even scarier.

Hello my name is amber, I'm 21. I was diagnosed WPW when I was 2 months old. I didn't have any more symptoms until I started puberty. When I was 11 they decided to do the heart ablation surgery even though the could never catch it on a heart monitor. They made my skin raw:(. So far its been successful. My heart skips a beat every once and a while and every 4 to 6 months ill will pass out. I dont know if there is something else wrong with me to cause that or if it has to do with my heart. Its scary. I dont know if anyone else has experienced this after this surgery. It started 3 years ago and is getting more frequent.

I am a wpw pt and a paramedic my WPW started when I was 14 wasn't diagnosed til I was 20 passed out in the ER ambulance bays the medic I was running with got me on the cardiac monitor found a delta wave so they shipped me to the nearest cardiac hospital via helicopter I went in for ablation at 6am and delta wave wouldn't hit!!! Still to this day it comes and goes on its own an I still have syncope epsidoes but my work crew knows how to handle it now!!! So its not abnormal to pass out from this it is your body's safety mechanisms to restart your heart!!!

My little girl was diagnosed with WPE at 11 months old ,, she's had 3 attacks since then!! She is constantly ill she's suffers with a lot of wheezing and her chest sounds bad!! I get very worried as I can hear her heart beating I just feel helpless and would like to know if its normal ??? Thanks

I've had Wolff parcinson white since the age of 8.. I've had 5 operations and none have worked so far, at the moment I'm on 50mg of atenolol and 150mg of flechanide twice a day. xxx

i am 47 years old i was diagnosed with WPW when i was 15 while i was playing a soccer match at school, my parents took me to an specialist and the doctor told them that i could not play any sport ever again and to start taking medication asap, i kept on playing soccer, i am also a surfer(LIma_Peru) i smoke weed, did all kind of drugs that you can imagine, xtasis,acids,heroin, alcohol, and here i am, i had episodes once in a while, but learned how to control it. But lately i being havind episodes very often and now that i have kids and the crazy life is over i want to have the ablation, because is getting worse day by day, the other i was surfing at the beach and when i came out is when i noticed that my heart was at 190 miles per hour i drove to jackson memorial and when i was fainting i start praying and asking God to be able to see my kids again, and it stopped, so now i am not taking more chances i am saving some money to get my health insurance and have the ablation asap. saludos peaceeeeee

Start raw juicing, keep potassium up (bananas, mushrooms, coconut water), minimize alcohol (worse for you than even weed in the case of WPW, unless it brings on panic attacks in you), minimize caffeine, chocolate, fried food, strong cheeses. Many wpw sufferers swim but I cannot it is the worst exercise for bringing on palpitations for me. Stop driving if you have palpitations; I'm not judging you, I used to drive myself to hospital but the fainting risk is high in some wpw sufferers please be careful. Good luck Papo

Hello.
I have been reading the responses on here as the symptoms sound similar. My son has wpw and is now 8 turning 9. He was diagnosed at 2 weeks old. He had medication for the first year and nothing since. Up until now he has not suffered any symptoms as such. He is always hot and sweats more than others and doesnt really drink alot. But he goes swimming lessons on a Wednesday and during the day on a thursday has been feeling ill at school and subsequesntly sick. Im wondering if exercise is causing his symptoms to reoccur? Would love to get your opinion. Thanks.

I have WPW. Some days I can exercise other days I cannot. Swimming is the worst for me. After exercise seems to be quite a sensitive window. Also minimize caffeine (some parents give it to their kids) chocolate, especially dark (theobromine) too much fried food, too much cheese, alcohol(when he's older). Keep his potassium levels up; bananas or mushrooms, also coconut water and/or electrolyte drinks. Some days when he feels weak, minimize activity as fits. Easier said than done with a 9 year old I'm sure! I find that when I juice raw fruit and vege eat a lot of green and eat raw grated beetroot in a salad I do not get them as much. Once again getting a 9 year old to eat some of that stuff could be pretty trying. I hope this helps. Poor little man, WPW is a pain in the butt.

Hi i'm James, currently 23 and was diagnosed with WPW about a year ago. still awaiting test results but i dont know too much about it. but i do know that anxiety and ADHD medications are definitely bad for it. i started noticing it slighty when i was 13 and right after my Papa passed away, and just before i started noticing it, i was hit in the chest with a shotput (like from track and field). so i went to the ER and they did some stuff and told me i had scar tissue in my chest from the incident. so i brushed it off and it started to feel better, then about a year later i was put on Dextroamphetemine (Dexidrine) at the beginning of grade 8 and about halfway through the first semester, it all began. the palpitations, tightness, ability to crack the center of my chest, fainting, every time i stood up my vision would turn to white and if i didnt find a chair soon i'd be talking to the floor. more recently i've also noticed that in my right arm, sometimes if apply pressure or lift up a jacket sleeve theres this odd pain like a vein is about to rupture. i also smoke marijuana occasionally, and find i will have episodes once in a while, one time i fainted in my buddies garage. i had like one or two drags of his pipe and i'd have the same problems as when i stand up. only the faint came alot quicker and i bashed my head on three separate objects. that doesnt happen very often though.

but anyways, after the meds caused the complications. i went to my family doctor, told him my case and he took me off of them. i flat out declined any other meds because i got bad vibes from them and thinking they would all do that eventually. i went to the ER again because it was still persisting about 6 months later, they told me again it was scar tissue. by this time i was frustrated and quite frankly, fed up with doctors. then i started working in an industrial hydraulics lab and the work was both physically and mentally challenging i loved it, so i figured i would try and treat my ADHD again, i asked for the same meds i had before i quit them. they worked great for the first year and a half. then i started getting anxiety from work because the boss wasn't paying us, i hung around for about 4 months getting paid once a month, and the symptoms were kicking in like wildfire, palpitations about 5 times a day, no less than 2-3 minutes each time and slightly more powerful each time. so i quit my job because i couldn't take it anymore. i went back to the ER and finally a doctor with some sense, diagnosed me in like 5 minutes, set me up with a specialist and now im awaiting results.

however, i was wondering if anyone here also has ADHD/ADD and if so what do you do to treat it with WPW? any meds ive been prescribed have caused complications, and mental focus is pretty much imposible without meds for it.

any help would be greatly appreciated. :)

I am 30 years old. I had my first experience of WPW syndrome when i was 17 (the age when i started smoking). My father has WPW but he only has palpitations (extra systols) as symptoms. He doesn't need any medication or ablation process. Genetically I have WPW but other than palpitations, i have SVT's (supravenntricular tachycardia) once in 2 or 3 months. Every once in a month I had extra systols (extra beats). Sometimes these extra beats would happen for a second and stop. However; sometimes they would not go away and unfortunately trigger SVT. At first my heart would beat in 160 bpm. That is not a huge number as the doctors told me. I would not even care about it. I would just lay down and wait for it to go away. Sometimes it would last for a minute, sometimes an hour. I never went to hospital to stop it. The crucial thing was I did not know too much about this syndrome. I would take it for granted, think as if i was an old man climbing up the stairs and have palpitations. Every doctor i went to said that it was nothing to be scared of and i did not need any operations or medication whatsoever. One day my life changed.I did not fear death but i wanted a normal life. Because WPW affects one's life socially. You dont know when or where it is gonna trigger SVT. So I went to the best respected doctor in this area. By looking at the same ECG as all the other doctors did, he was the first one to diagnose me with WPW and told that it was risky and could cause into sudden death even if it is less than 1% of the patients. I got too scared when i heard the phrase 'sudden death'. I mean who wouldn't. One second you are here and the next you are gone without even realizing. He told me that the ablation would cost almost 15000 dollars. I thought that he was trying to rob me. No other doctor told that it was even risky. So i said no to his suggestion for ablation. And i went on with my life. But one thing was different than before. My psychology. From then on, WPW was not such a simple issue for me. I started to search and search. Dig into internet. The more i learned the more anxious i got. So together with my anxiety, the 160 bpm SVT would turn into 190 bpm. Also the extra systols started to trigger SVT's more frequently b/c of anxiety. ı learned about how WPW could cause ventruclar fibrilation, how it would lead into blackouts, how it would get me a cardioversion, how beta blockers could cause an increase in the heart rate, and so on. So my SVT's would not go away by itself and everytime i had an svt, i felt like going to hospital. The only thing that stopped my SVT was to press on my eyballs. i was lucky that this manevuer worked sometimes. As you may guess, i started to get bored of my episodes in time. everytime i bend over i was scared that it would trigger, everytime i start running i was scared, i wouldn't go to skiing or go abroad fearing that it might happen again, i havent had a cup of tea or coffee for 15 years. so i decided to have my ablation to have a better life. and i went to that same doctor. that was the best decision of my life. to be honest i was scared of the process because of that tiny chance of contradictions. but knowing that i was in the hands of e very well respected doctor, i got releived. and i paid no money thanx to insurance. my operaiton lasted for 3 hours. i was conscious but was medicated with dormicum which really helps relaxing(if u know what i mean). i watched the doctors putting the catheters in me, i watched the screens during the process, talked to them and laughed. it is a very simple process. mine lasted a bit long because the accesory pathway was hidden behind my heart. i felt the catheters in my chest. and also i felt the burnings. they told me not to breath during burning process so that my chest does not move and they can burn the right spot. they control everything. and when you see how the process works and that they control everthing, you get more relaxed. they give an impulse to trigger SVT then burn the suspicous tissues. after the the 10th or 12th trial they ablated the right tissue and my heart got to normal speed. they tried to trigger it over and over again just to double check, but SVT did not start. so it was a succesful ablation. it's been 2 months since i had it done. havent had any episodes since then. i only had palpitations 3 or 4 times. the doctor told me that it was ok to have them for the first 3 months. the reoccurance of WPW is 5%. it can occur in 6 months, 1 year, 6 years, 15 years or never. that is a very good percentage i think. even living 6 months without WPW is awasome. i know that even if i have it again, i might go and ablate it like going to dentist. so you shouldn't fear it either if the doctor told you to have one. god help all wpw patients.

So it has been a couple of months since i found out i had wpw. Here is a brief update. I was put on beta blockers while waiting for my appointment. In february i was put on the cancelation list to see an electrophysiologist. The wait for these specialists are very long and there are only 2 of them in the entire erea where i live. I was blessed that i got in so fast. He told me that my best option was to have an ablation of the heart with either hot or freezing, that was up to me. I picked the hot laser because the success rate was higher ( it means they are burning off the area that is sending wrong signals to the heart and causing it to beat fast)
Recovery was quick and the procedure went well. Im still upset with my doctor for telling me all that time that i was just having panic attacks. Get a second opinion people! Im feeling good and have had no episodes. Its still early so i guess only time will tell. So far so good!

I have had this all my life but only found out it was WPW the other day. I am a 41 year old female. When I was a little girl I would announce to my parents that my heart was "doing that funny thing again." My mom took me to our family doc and he said I was hyperventilating. I went about a normal lifestyle and dealt with the episodes as best I could. Even running cross country in high school I remember having to stop during running and lay down until attacks subsided telling everyone I just needed to relax because I was just hyperventilating. It didn't make sense that I could hyperventilate at any given time, or during any given activity, or lack of activity. Honestly, I was embarrassed wondering what other people must think of me since I was apparently anxious enough to hyperventilate at any given moment. Then when I was pregnant with my second child, 15 years ago, my OB/GYN heard an odd rhythm at a routine check up and sent me for an echo. He saw I had some mitral valve prolapse with regurgitation. He explained that this condition is harmless and I asked if this is why I would have these episodes of feeling like my heart stopped beating and instead started racing/vibrating/fluttering (those with WPW get the picture) which felt like panic attacks. He said the regurgitation of blood could be known to cause fluttering and that it was harmless and that issues like this one were more pronounced during pregnancy because of the extra blood volume created during pregnancy. At this point in my life I had had so many episodes I had learned by accident one time how to make them go away with vagal maneuvers instead of just waiting them out. I didn't know they were "vagal maneuvers," I just knew they worked. I have always had low blood pressure and was on the high end of heart rate. I was told one time that my heart rate was on the high end of normal because I am so petite (5' 3/4" about 115 lbs). Last year, however, my blood pressure top number was up in the 130's at a dentist visit. We chalked it up to stress but over the course of the year it has been in the 135-140 range and my heart feels like it is working harder than normal. And my episodes of irregular heart rhythm are increasing and sometimes have been much, much worse in severity. They never last more than a few seconds because I have become so adept at using vagal maneuvers, but two times even the beginning of them just felt like an elephant was on my chest and like my heart had stopped completely and very nauseous. These two episodes were very, very scary and have caused me some anxiety. And the number of "normal" episodes has increased in frequency to the point it's happening very day. In the past month as well I have noticed that anything which would cause me the teensiest bit of anxiety (sandwiched between 18 wheelers on interstate, checking out at grocery store, etc) is now seeming to cause me extreme anxiety. Last week this also started happening during customer appointments. I have cut them short and basically bolted out the door as fast as I could hoping to calm down in the comfort of my car and the wondering why I couldn't "calm down" for hours sometimes. This all came to a head when I was hosting an annual get-together at my house last week and had to lay down in my bed twice while the guests were here. I went to family doc next day and explained heart stuff and anxiety. She did an EKG and called a cardio doc who had her send me to ER. ER completely dismissed whatever it was they saw on the EKG. Went back to family doc next morning and she prescribed me Lexapro. Then I saw the cardio doc that afternoon who was WONDERFUL. He listened to my entire history and asked lots and lots of follow up questions. He said it sounded like WPW. The he looked at my EKG and said that's what it was. But he still is having me wear a heart monitor for up to 30 days so he can see my bad rhythm (I think). And doing a stress test and echo to rule out vascular or valve disease.

If anyone has suggestions or feedback for what I should ask or what I should expect, please post! I am particularly interested to know if anxiety is causing any of these issues. I am not at all in love with the idea of taking an anti depressant and am wondering if it will even help if the root of the issues is physiological and not brain chemistry. Or could it be both. At this point I wonder if it is both....

Hello! I have WPW, and anxiety sometimes starts supravenntricular tachycardia for me...

I have WPW and had the ablation done about eight years ago when I was 22. Up until then it totally stopped the 300bpm hear rate episodes. But within the last year or so when I lay day a certain way it starts and stops until I move. I'm 3 months pregnant and a little nervous. Nothing like this happened when I was pregnant with my first child. I know when I go to the cardiologist they are going to make me wear a halter monitor for a week and I HATE wearing it. Half the time nothing ever shows up. Has anyone gotten any repeat attacks after the ablation?? I didn't realize this was such a well known thing.

I have had two ablations and have had attacks after both! Actually I had my worst one yet after the second ablation, It came when I was training and lasted a full hour! Actually after the second ablation I got one that lasted for 15 minutes for the first time, before that I had had only short ones of 1-4 minutes! Before the first ablation the longest one was less than a minute!

Two weeks ago i went to the Doctor for severe back pain. I had told the doctor that i had passed out in the shower and woken up by the time the water was beyond freezing and my body was contorted in an odd way. i found that i had a pinched Sciatic nerve in my lower back... My doctor had also told me while in the hospital in june when i went in for stomach problems for a week (found nothing) i had also gotten an EKG done. it had come up abnormal and that i needed to follow up on it. at this time i was graduating from highschool and it had slipped my mind. when i saw the doctor for my back i had also mentioned as a side note that i had felt the night before like someone was was grabbing my heart and squeezing it. at first they told me that it can happen and not to sweat it. then requested i did another EKG. once again it came up abnormal. the Doctor walked in and told me i have WPW. she said if not treated immidiatly it can be fatal. ive had to stop working out, avoid caffeine (7a college classes boo :[ ) and much more. i go to see a specialist today at 2p and im terrified of what they will tell me. apparently it is somthing i have had my whole life...i am 17 and have major anxiety issues to the point that its crippling. they told me that may be because of WPW. im hoping the doctor gives me good new. cross your fingers for me. your all in my thoughts.

What did you find out about the anxiety?

For years I would go to the doctors office and tell them some symptoms I was having and all they would tell me is that I had anxiety. I'm sure that I do, but I knew that there was something else wrong with what was going on with my body and mind. I'm 30 yrs old and up until the last couple of years I have always felt great. I'm very active and live a pretty active lifestyle. I drink moderately but nothing ever extreme. I used to be heavy into smoking cigs but have cut down on that dramatically in the last year. But like I said, I've always felt great. I started having these attacks and I thought they were just panic attacks since my doctor told me that I suffered from anxiety. For me they were almost like heart-attack like symptoms. I've always had a faster heartbeat and never really thought anything of it. Never had any problems until recent either. I was just recently diagnosed with wpw a month ago. I'm almost relieved in a way to know that I wasn't completely crazy. It angers me to think of all the trips to the doctor and money wasted for them to always tell me the same thing. I have an appointment with a electro cardio specialist coming up in two weeks. During this consultation we will probably talk about catheter ablation. I've done my research on this procedure and am trying to be optimistic about it. The only thing I worry about is the cost. I have good insurance but I have a deductible of $2500. I then hear that my insurance will cover 80% after my deductible is met. I've read that the ablation can cost anywhere from $14000 to $26000 US dollars. Omg. Is that true? I know there really isn't a price to put on your health but let's get serious. That is crazy how much that costs. I'll pay it because I just want to feel normal again. Maybe I'll feel better than I thought normal ever was. My eyesight today is terrible. It feels like it gets worse everyday. I can feel my neck swelling up at times and I get a flush of redness to my face along with sweating. I have trouble breathing. I feel like I can never get a full gasp of air. Parts of my body are constantly cold and I feel discomfort in my chest. I regularly feel strange things going on in my chest and I'm not sure sometimes if that is related. I think the worst symptom for me is the visual disturbances I feel on a daily basis. What I mean by that is the tension in my head becomes so bad that I feel slow. My perception if off and my motor skills are slow. It's like everything is in slow motion. Sometimes it's hard for me to drive on the highway because everything is moving so fast beside my that I feel like I'm going to lose control. I feel not as sharp as I used to be, not as acute and definitely my reaction time has diminished. Does anybody else have these neurological problems?? It scares me. But I am able to still think, communicate and carry out work on a daily basis. I'm glad there are other people out there who may know what I'm talking about. Because before I only sounded crazy to everyone else. Message me if I can help anybody else. Thanks.

OMG. I have the exact same symptoms that you do!! I've had the abnormal heart rhythms all my life. Family doc when I was little said I was hyperventilating. Got an echo when pregnant 15 years ago and said it was due to a valve issue. It just got much much worse at age 40 and 41 and finally know I have WPW. So do you do anything for the anxiety? At this point I don't know which is chicken and which is egg; WPW or anxiety. Or if I even have anxiety. Doc, mom, and friends want to put me on Lexapro but even when I am the most relaxed ever an episode can come on. And the symptoms are daily for me at this point.

It's amazing what I am reading. So many similar experiences. I'm a 38 year old Police Officer. Almost 16 years ago I was responded to a drunk driver that took out an electric pole. I assisted in the rescue of the victim and one of the rescuers came into contact with a power line, electrocuting and killing the driver and 3 firefighters. I was diagnosed with a secondary electrical shock to my right arm. About 2 years later I was attending in-service training for homicide investigation, watching slide after slide of homicide pictures...pretty intense. I was about 25 years old and I began to feel numbness in my jaw, then into my left shoulder and arm. Without being too graphic, I also began to feel an odd numbness in my groin area. I excused myself from the class as panic began to set in and ended up in the emergency room. I was essentially told that I had a panic attack. My fitness level has ranged from poor to fit over the years. My blood pressure appears to follow my fitness level but has always run a bit high, probably a product of my job stress and having 4 active children. I have seen primary care multiple times over the years and to a lesser degree cardiologists and even psychiatrists and acupuncturists. I have recurrent symptoms as follows; facial and neck flushing, isolated body sweats (although hands and feet sweat 24/7), occasional extremity tingling/numbness, distorted vision and redness of the eyes. Within the episode, I don't have pain but a fullness beneath my sternum...pressure. Mild difficulty breathing. The worst is when I can feel my bp elevated. I know that I am susceptible to anxiety as I have been told numerous time by physicians. I take my bp but seeing the elevated number only makes anxiety worse and bp higher. On one occasion I awoke with symptoms, 210/99 from a dead sleep. This sometimes does and sometimes does not couple with a rapid heart rate and palpitations. For those who have experienced this, you know the hell of which I speak. You feel as though you are dying. These episodes are sometimes associated with a known stressor, confrontation with a bad guy at work, responding to an in-progress call and sometimes it's out of the blue and for no evident reason at all. I can be sitting on the couch watching tv and I can just tell that I'm not feeling right. As I sit here now, I can feel the heat emanating from my head and face. My heart rate is sometimes difficult to manage. I wear a HR monitor when I exercise. Some days I have a difficult time keeping my HR under 170 with moderate cardio and other days with the same effort it tops out at 145. I've had stress tests, EKG,ECG, MRI, 3 day an 30 day heart monitors and nothing that raises a flag with doctors. I'm told again that it is anxiety. In the last 3 years I have ended up in the emergency room 3 times with these attacks, going only when symptoms lead me to believe "this is it!". Last time I awoke and felt odd. As my feet hit the floor to head to the restroom, my body began to tremble and shake uncontrollably. My bp would not register on the device, only showing "error". Medics said my veins were so constricted they could not start an IV. On each occasion, I was kept overnight and released. Last trip resulted in removal of my gallbladder and although some things have improved, the majority of these persist. I do public speaking and teach and sometimes the normal nervousness that one feels sends me into tachycardia. My heart rate shoots through the roof and it is difficult to bring down. My hr has always been slow to recover after exercise and this only seems to be getting worse with age. My docs have put me on anti depressants, bp meds, and Xanax. I am currently on none with the exception of occasional (1-2 per month) Xanax if things get just that bad. I exercise 3-5 days per week, heavy cardio with light weight training. Diet is appropriate to good. Doc put me on propranolol for situations in which I may expect a stressful event to control heart rate. This works very well in the moment but the day after I used it successfully, I had a bad episode after a 3 mile jog. After returning my hr to 100 I drove home. Suffered unexpected bout of rebound tachycardia where my hr shot up to175 for no reason, so I stopped that med. Tonight, I watched my daughter give an important speech at school and felt as though my heart was going to explode. I was more nervous than she was. I made it through her speech and immediately excused myself for fear I would pass out. Out of nowhere! Ugh...I am so tired of not feeling well. Especially when I am taking pretty good care of myself, keeping weight in a good range, etc. I can't part with the Job stress unfortunately, I'm 20 years in and have just under ten more until I can retire. I apologize for the long post but I'm shedding 16 years of pent up frustration. As with episode tonight, I know there is some strange psychological component to all of this. I am curious as to the correlation between WPW causing anxiety and vice versa. My docs apparently don't find that I am a WPW case but boy do some of these stories sound familiar. Any responses as to your success in battling anxiety associated with these heart issues would be so appreciated. Hearing all of your stories is already a great comfort to me, as I know that I am not alone. God bless you all.

I have the same things that you do. And someone who has anxiety for 5 years when I found out this forum I can't sleep now, cause I think
I have this syndrome((( but I checked my heart 2 weeks ago
And doctors told me that I'm fine(( but I have all your symptoms and I'm
25 years old(( I wish I know how to stop it. Have you found out the difference btw this syndrome and anxiety?? Cause as its written in your post, my heart is starting to beat very fast just because it wants to and I don't know how to stop it. It's mostly happening if I don't have a good sleep, or before flight, or when I need to perform. And once I m done with thing I was worried about my heart starts to beat normal but for few days I feel very weak(( and can't move.

Check your ECG?

Im unsure if this will be of help to you but my WPW improves when I look after my health; especially diet and sleep. I cannot always exercise, have to play it by ear. This is frustrating because no exercise is not good for you so you have to keep a balance, low cardio is better, build its strength slowly-do not exercise by typical standards or get a personal trainer-if you need to stop, STOP! Diet is so important (and strange because some of the things they tell typical heart patients are no good for me-drinking red wine makes it worse and not having enough salt is really bad for me), minimize the stimulants (alcohol, caffeine, theobromine-chocolate stimulant, white ok, milk sometimes, avoid dark at all costs), try juicing raw fruits or vege. Too high or low blood pressure makes it worse. Alcohol must be minimized sometimes completely avoided. I even find that too much strong cheese and fried food will set it off. Moderation is key. It comes down to self knowledge; you know your own warning signs better than anyone. But most importantly, learn to meditate. I am not a hippy. But this is the best way to control your anxiety, once the heart rate increases and cortisol is released into your system it is harder and harder to slow it down (stupid stress hormones). Heart rate and and anxiety are so related. I cannot intensely exercise. Other wpw sufferers seem to like swimming but that is the worst exercise for me it almost certainly brings on palpitations. My triggers are really annoying and strange as I can do these things some times but not other days (only you know those days, listen to yourself); standing up too fast, forcing a burp to hard (thoracic pressure i think its called) or a bowel movement (I have given myself palpitations pushing too hard; emergency ward had a hell of a laugh), getting really excited, getting really depressed, anxiety, blowing up balloons, holding breath too long. I get really weak sometimes; electrolyte drinks or coconut water help a little (esp coconut water, high in potassium, something heart patients need to keep on top of, otherwise bananas and mushrooms) but especially green vege (broccoli, spinach, kale), red berries, raw grated beetroot in a salad seem to help but you have to listen to yourself. Easier said than done though; especially when you have a family. I only have one child but am already noticing things I cannot do with him. Some days I am so weak and chest feels "weird" in a way that tells me it would be very easy to trigger an attack, so that day I avoid certain activities that involve standing/bending rapidly and frequently, extreme temperature changes and putting my arms up high for long (like hanging out washing). Makes you feel pretty pathetic and weak to be honest. I really feel for you. Ive read that pressing on your eyeballs and rubbing the artery in your throat (valsalva technique, do not do for too long!) help. Also blowing into a syringe. The same thoracic pressure that can trigger them can also stop them, sometimes. Bloody hell sorry about the rant. Take care Sir.

Hi.
I am not a doctor and therefore, unable to confirm if anxiety and WPW are linked, but from reading a lot of stories on here, I would assume they are.
I had no idea what the condition was when my son was diagnosed.
But the Royal Brompton Heart Hospital in London were fabulous. They explained to me that as he was a baby he obviously couldn't explain what was happening. All I knew was that he could not feed and breath at the same time.
They said that if you have a little 'lip' at the bottom of each heart beat (so it curves at the bottom of the down line, before the long straight line shoots up), the patient has WPW.
This is apparent on all heart beats, whether they are resting or during an attack.
Are you able to look at your ECG to see if this on there? That might go a little way to seeing if you have WPW?

3 More Responses

I am 37 yrs old and was diagnosed with WPW 6 years ago. Had an attack atleast every year. Anyway, to share my story of how i found out......

1st attack was not that bad....i just had shortness of breath, dizziness and fever. I just rested and was ok. I did'nt take any medications after that and the Doctor said maybe i just caught a viral flu. No test were done.

2nd attack was the same shortness of breath, dizziness and fever. No medications was also given. They did some test like ECG, 2D echo, thyroid and it was clear.

3rd attack - Feeling dizzy, shortness of breath and palpitation.I went to the emergency and they check my heart rate.it was @ 280rpm (variable). They had an ECG and right there they found out that i have a WPW syndrome. I was advise that i need to have cardioversion so that my heart will be reset. The doctor shocked me with 100joules i was back to normal again. My Doctor then advise me to take amiodarone and aspirin. I took the medicine for 6months and I stopped drinking it. After 6 months i had another attack

4th attack - Same like the third attack. Had cardioversion @ 100 joules and i was back to normal again. After that drink medicine again for 6months then stopped. After 6months another attack.

5th attack - Same like the 4th attack. I realized that most of the attacks were triggered by drinking too much alcohol (specially beers) and coffee (or anything with caffeine). Drink medicine again for 6months and stopped. I also stopped drinking alcohol and coffee. After 2 years i had attack again.

6th attack - palpitation @ 280 rpm (variable). Had cardioversion again and was ok.

Im drinkin medicine again for the past 3months. My Doctor advise me to take the ablation and i will not pay for anything. It will be covered by the insurance.

I read previous experiences here the reoccurence of this disease. I dont know if i will push thru....need your advise on this matter. Thanks

I have WPW, SVT and A-Flutter and I am a 26year old fitness fanatic male. I first had an attack at 22 when my heart rate went over 300bpm. I was on medication to control it until my ablation, then after that everything was fine and life went back to normal. Unfortunately last month the same thing happened, 300bpm, chest tightness, shortness of breath, neck swelling ect. I am currently on medication and waiting for a 2nd ablation. An ablation is only 95% succesful, so it could be the same pathway, or it could be a new pathway, some people have been known to have 8 defected pathways. They will only fit you with a pacemaker if it is too close to a regular pathway to operate on. The sickness/dizziness/tiredness is an effect of the medication as it is fighting the hearts irregular beating patterns. Hope this helps anyone concerned! x

Hello! I heard when they do the ablation they double/triple check it that there aren't any active accesory pathways left. I take BETALOK ZOK 50 mg, but had the tiredness before the medication too.

I am now 26 years old however I was diagnosed with WPW, SVT & A-Flutter when I was 16years old. I am not sure if they are all tied together or seperate but they are presented to me as if they are one in the same. My issue is that I was born with this however did not find out until I was 16 when my heart stopped on the table of trying to get an abortion. I could not go through with it (thank God) however when my heart stopped I had to go to the ER and they did a simple EKG and found out about it. I tried medication and it never worked. I have been off of that since I was about 19 and never tried again. I tried the ablation twice but did not work. My extra electrical valve is too close to the normal valve therefore my only option is a pacemaker. Right now I am having severe panic attacks over getting this pacemaker done. I am not able to really workout, walk up stairs, hills, play with my kids, etc....Will getting a pacemaker really change these things? Will I be able to work out, run, play with my kids, walk up stairs, etc.....? Can anyone help me with this decision? I am going back for my checkup in March with my EP and I want to say YES to the pacemaker however I am truly scared and paniced that its a waist of my time.

Im so glad i found this site. For a couple of years now i had really bad symptoms, racing heart, feeling of fainting, short of breath as if i could not take a big enough breath. I would be laying on the couch and out of the blue my heartbeat would go to 155 in a second. The most awful experiance ever. Went to emerge 3 times but by then it had stopped. My doctor kept telling me that it was anxiety and i sufferd from panic attacs. I was getting so depressed over this cause i knew there was more going on. I started to think it was all in my head! After finally seeing cardiologist and test, i was diagnosed with wpw. What a relief to know im not crazy and they werent panic attacs! Now they are finally doing something about it. It was starting to ruin my life. Good luck to you all!

Thank you so much for posting your story! Could you update us with your treatment and how it has been going?

I had my first ablation 10 years ago next month, over the past year I have had the odd palpitation and in the past 2 weeks they have got much more frequent to the point where I am now having them at least once a day, although they feel slightly different than before in that I don't feel as if my throat is swelling up when having one. I have been getting headaches every morning too and a couple of years ago I was having dizzy spells and was sometimes passing out, I too have had numbness on my left arm and left side of my face and tongue and hand. I sometimes get chest pains too. I have been back to my doctor who is referring me back to hospital for tests, I hear a pacemaker is quite common now as an alternative to further ablations. Has anyone heard this? I'm quite worried to be honest I thought it was over with :(

I am 40 years old, dealing with WPW for several years already. I want to have an ablation, but reading all this posts and knowing that I might have the same symptoms after all... Is that really worth it? plus I don't have insurance currently and the procedure is about 70,000 =(

Hello to all! I haven't been around for some time... I had ablation on 7/14/2011 that went well. I did have some symptoms afterwards for a while, sometimes I still have them, but overall it's much better. Before I had ablation I was on different medication and none of them helped. I had a very good doctor that did ablation. I am not sure if any of you are, I live in Orange County, California, and there's a very good doctor I recommend. Please let me know if it would be helpful if I gave you the name and address. My lifestyle has also changed and I found that prayers help a lot...more than anything else I have ever tried. Blessings to all, I'll keep you in my prayers!

get yourself checkup in a good hospital like AIIMS , new delhi , india

@Lina246:

I too, was a "late bloomer" with regard to WPW - I wasn't diagnosed until I was 29. Three years and two ablations later, according to my cardiologist, I've been cured of WPW. But, I still have some of the exact same problems I had before having the ablations, (chest tightness, just an overall "off" feeling, feels difficult to take deep breaths/shortness of breath, racing heart, dizziness, etc.). The only difference seems to be that instead of my pulse getting up to 180, it only goes into the 120s and the 130s. I'm lucky, I suppose, because 95% of the time I am perfectly normal and have no activity restrictions, etc. However, when I do have a day with heart symptoms, it's frustrating now because no one seems to know why I'm still having symptoms. I'm seeing my doctor next week; are any of you in a similar situation? You've had an ablation, and now according to EKG readings, your extra pathway is gone, but you are still having symptoms? If yes, what have you done for it?

Im 17 years old and was also diagnosed with wpw Ive had it snce i was born but now its gotten worse Im going to have my first abaltion ina 3 weeks.

my name Bre i'm 14 i had wpw since i was born but around 2 it kick in they did MRI's, CAT scans, blood tests, ecgs and they couldn't find what was wrong. till about 2 years ago i blacked out due to wpw. the doc's found out that my body cant handle surgery and the meds dont work. this sucks i cant work out, run or any type of sports. Am I really going to die like this?

Hi Bre, my son is also 14, he has wpw and svt, there has to be some doctor out there that can help you. Please keep searching, encourage your parents to find someone in the medical field who is willing to further investigate your wpw. My son is in the same situation as you, but we are not going to stop until we find some way for him to have the ablation, God bless you darling, I feel your pain and hope there is someone out there that can help you.

Hi Bre.
How is your WPW now?
My son has used Propanalol which works great - although he doesn't take it all the time.

I have had two ablations . The second under anseathetic I am still the same . I have dizy spells and have had lots of falls . The feeling of complete terror when the strong palpatations occur. My Surgeon was brilliant and advisd me it was worst case he saw, My other specialist however was less than supportive . It is something you need to live with . Two of my four sons have it too x

Im 18 and I've had WPW since I was 1 1/2 and it's been a problem all through school I couldn't do hardly any exercise because I would start having chest pains, palpitations and dizziness , I had my first catheter ablation when I was 8 and that was un-sucssesfull they tried to burn the pathway out but it was to close to burn so they done another operation 2 years ago but this time they tried to freeze it but again this didn't work. I know I have to deal with this WPW and I will most properly have it all my life, my father died of heart failure but it's something I have to deal with.

I am 14 years old and I was diagnosed with WPW when I was 3. I had an attempt at an ablation when I was 9 but it was a failure. WPW is vey rare with someone my age. But does anyone know if it is possible for Women to have WPW?

Hi.
Yes I know lots of women with WPW x