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Living with vasovagal episodes

Posted In: Medical Stories 18 Replies
  • Posted By: patimre1
  • February 11, 2009
  • 06:21 PM

About 10 months ago I started having weird "episodes" which I believed at the time to just be caused by stress. Chest discomfort, racing heart, palpitations, dizziness, near black outs, neck & back pain, headaches, extreme fatigue and weakness.

I went to my regular doctor for this these stress issues. He did an EKG and even though nothing showed up he sent me to a cardiologist believing this was heart related.

The 1st cardiologist ordered many tests. 6 months later and medical bills piling up I still did not have an answer for why I was having these "episodes". I was told was I had low blood pressure and a PFO which would not cause these symptoms. I was told to increase my salt intake - that’s it.

8 months later - I had another episode the worst episode yet which I almost didn't recover from.
I was just sitting, not doing anything physical and I started feeling "funny". From what I was told, within a matter of seconds I lost consciousness and stopped breathing. My heart had stopped. I turned a purple white color and was given CPR for about 4 minutes. When I came to, I was confused and could not remember certain things. EMS finally showed up and brought me to the hospital. I was told by the ER doctor, it was a good thing I was not alone and was with someone who knew CPR. All tests at the hospital came back negative, but I knew something obviously was being missed.

I returned to my 1st cardiologist, after being released from the hospital very upset. After expressing my concerns, he sent me to another specialist. Meanwhile, I was terrified to be alone if another episode were to happen who would give me CPR.

The 2nd Cardiologist listened to my story then sent me for more testing and put me on a 28 day monitor. Again nothing showed up on the tests. The heart monitor showed my heart was skipping beats but that was about it.
I was then sent for a tilt table test. My Cardiologist was pretty sure I would fail the test and pass out, but she did not realize the extreme nature of what was happening to me until I failed the test. I didn't just pass out, my heart completely stopped beating and I had to be resuscitated. When I woke up, the nurses, and my doctor were beside themselves. In my doctors own words she said “I was horrified".

I was told my vasovagal nerve is causing these episodes and I have an extreme case. There was no "cure" for this diagnosis. I can only make lifestyle changes and always be prepared for another episode. I am about to undergo surgery to get a permanent pace maker. This is supposed to keep my heart beating during episodes.

It is frustrating there is not much literature on vasovagal episodes. I have searched the web daily, but only general information is available. I was diagnosed about a month ago now, and my symptoms are only getting worse. On top of all the other symptoms, I now suffer from night sweats, swelling, and get "dizzy" consistently through the day. I am still having memory problems. I am terrified another episode will happen while I'm out in public.

Does anyone know where I can find more literature on this condition (besides general web searching)?
Does anyone have a condition like mine or know someone who does?

Thanks for listening.

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18 Replies:

  • I also have vasovagal episodes. Last night I found myself, again, in the hospital. This was the first time I got a confirmed diagnosis. Before that, I'd had 3 that I'd either been to the hospital for or had been in the presence of another person for, but several that I didn't mention to anyone. The first doctor I saw was at a military hospital 2.5 years ago. He said that I'd been making it up and had "put on an act that cost the military $1000." The second time I didn't go to the hospital, but gave my friend a terrible fright. I drifted in and out of consciousness, once waking up as she was about to give me CPR. The third time the paramedics and hospital all said I'd had seizures, but the specialist they sent me to said they weren't seizures. There was no follow-up. Last night was the first time that my heart didn't stop, but it skipped many, many beats and I stopped breathing several times.I wish there was more literature about this out there in the world, because it's scary. I'm 17 and I'm wandering around with everyone freaked out. My parents side with the military doctor, and think nothing is happening and are now getting mad when I end up in an ambulance. It's come to the point where I have to go to the hospital in secret, creating lies and alibis.
    Anonymous 42789 Replies
    • February 12, 2009
    • 11:25 PM
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  • My daughter has had these same "episodes" for nearly four years now. SHe has had MRI and ECG EEG, sleep deprived EEG all negative One EEG suggested right temporl lobe problemRecently she visited a cardiologist who diagnosed Vasovagal and suggested an implant monitor so that when an episode occurred this could be activated to collect heart data.She is having episodes every week now and consistently banging her head so she is surreing for headaches. She has missed 33% of school days this term and as she is studying for University she is getting really upset and annoyed that they keep happening. She has been told to crouch down and clench her fists and to drink a litre of water and to up her salt intake which she finds hard as she is not fond of salt. SHe had an episode this morning and again missed her part time job work I am expecting the employer to say enough is enough. I wish there was something that could be done. There was a suggestion of using hypnosis to auto suggest to the sub conscious that there was nothing to worry about but I am not sure that would work. One possibility is for her to become pregnant as the increase in hormone levels has an effect as does menopause (allegedly). There is though not enough literature concerning this problem.
    Anonymous 42789 Replies
    • December 19, 2009
    • 05:05 PM
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  • I am almost 33 years old and I just suffered an episode yesterday. I hadn't had one in a few years but I have had them since I was a child. I was finally diagnosed as having Vasovagal when I was about 24 years old. This is the first time I saw a doctor and the first time my parents even knew what was happening since I was a child. As my sister told my Mom after I saw a neurologist, "Oh yeah, when we were kids she would pass out and we (my sister and another kid) would keep playing. She wake up later and start playing with us again."My episodes normally consists of me passing out and then my entire body begins to have convulsions. To a common on-looker they describe it as I was having "seizures." When I regain consciousness, it takes a minute or so for me to recall who I am and where I am. Then another minute or so, to gain the same level of energy I was at prior to fainting.As I grew older, I pretty much could feel when an episode was about to occur and would tell those surrounding me that I was about to pass out but would wake up in a few minutes, if there was enough time before I went out, I would also say, "No need to call an ambulance." If I was standing up, I would sit down, even on the floor, as I spoke. What was actually happening, in regards to the convulsions, is only based on what onlookers have told me. I have also "successfully" tried to control these episodes, by stopping what I am doing, sitting down and just breathing deeply, slowly and as regulated as possible. The dizziness/nausea would subside and I would not enter the "fainting" phase. As you, and the other posts have stated, once you seek professional medical help - all tests results are basically negative, as if nothing is wrong. At first I thought it was related to pain and anxiety but yesterday's episode did not really involve those factors, though I hadn't slept much the night before. I actually ignore the "warning" signs and didn't even know I had passed out until I regained consciousness and didn't know why I wasn't at home, then I realized where I was and what I had been doing.I plan to see a neurologist again just to rule out anything eles. 8 years ago there wasn't much on the web about Vasovagal and I see there isn't much still. I am a female which I believe it is more common to have Vasovagal than males, and initially I was told the episodes "disappear" by the time you enter your 20s. I guess not. I'll repost any new findings or recommendations after my appointment. It is frustrating to not have more information available, especially since you know something is wrong but all the medical tests come up negative after the episodes and doctors cannot make conclusions without "evidence."Best regards to all -
    Anonymous 42789 Replies
    • January 9, 2010
    • 05:43 PM
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  • Im only 13 and i was just diagnosed with vasovagal last tuesday..it just started with really bad cramps and a bad migrane and eventually i started to hear ringing in my ears and i got really dizzy and clammy..all i remember was sitting down, then waking up with my teacher shaking me to wake up. Apperently i just fell down on my freinds lap and she started to scream because i was pale and my eyes had rolled back so she thought i died.. my mom took me to the hospital and after a bunch of heart tests they just said that i had a vasovagal attack.does anyone that has had it for a while know if it will happen again??
    Anonymous 42789 Replies Flag this Response
  • My 74 year old Mother was finally diagnosed with vasovagal syndrome 1 week ago. She has suffered multiple symptoms on and off for about 60 years and they have been getting worse in nature especially since the beginning of Jan 2010, which led us to the latest round of doctor visits and tests. She had agreed to have a tilt table test performed which this time produced an episode, 7 years ago nothing was detected. She had 3 stents put in back in October 2010 and for some reason her episodes now are the worse she has ever experienced. I'm not sure what the connection is with this vasovagal syndrome and her stents since I am still researching this new diagnosis. She is drinking more water and taking in table salt. Her Dr. prescribed a low dosage steroid, she is sensitive to medicine and the 1 pill she took made her feel sick and dizzy for 2 days. Her Dr. next wants to put her on a blood pressure medicine, and if that doesn't help alleviate the symptoms, then he would put her on an anti-depressant for anxiety which could make the episodes worse. My plan for her is going a little different since she doesn't tolerate meds well. She is already on a daily medicine for her stents which she hates being on, but she can't get off of them. She finds some peace with 1/2 a zanax. She has a history of doing the fight or flight thing very frequently, so we are going to see if this helps alleviate the symptoms for her, and she has agreed to take 1/2 pill daily. I read about a vagus implant that could be put in and when an episode is felt, you press the button and it stimulates the vagus nerve and hopefully prevents the collapse and other symptoms from occuring...still researching this one but they have had good result with those suffering from epilepsy. My recommendation to her is going to be hypnosis. I believe in the power of the sub-conscious mind and that with the help of a qualified hypnotist my Mother will be able to tap into her own power to alleviate an episode when she feels it coming on. It will also help her with her anxiety since for my Mother there is alot of drama and chaos, not alot of happy mediums with her and her adrenaline flow. She did testing last year with an endocrinologist and all tests came back normal too.Her heart Dr. mentioned that esophageal spasms can cause some of the symptoms that my Mother has, so will go see one next month just to rule this out. My Mother, although glad to hear that others out there suffer the same thing as her and she is NOT THE ONLY ONE and not crazy, is sad to hear that you are suffering the same thing, her heart goes out to you all. Our understanding of this vasovagal syndrome is that it is not lethal, but try telling that to the strangers and EMT's standing around you as you are on the ground and turning blue right in front of their eyes,with not enough blood flow to really talk. My Mother is a very active senior, dancing and bowling and enjoying life, this year was her worst year and these worsening episodes have made her not want to be in public...in a way it has become lethal by taking away her way of enjoying life. I am on a mission to find the combination for her to reduce/eliminate thes episode and symptoms..stay tuned and hopefully I may find something that works for you or vise-versa....Peace
    Anonymous 42789 Replies
    • December 18, 2010
    • 00:49 AM
    • 0
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  • My husband was just diagnosed as having had a vasovagal attack. After reading as much as I could find about this, I'm not totally convinced yet. I saw him and it wasn't just passing out. He turned a deep, dark shade of red, his eyes rolled back in his head, his tongue was out between his lips (all a dark, dark, dark red), and he slumped over. I'm not sure, but I don't think he was breathing - I really thought he was dead! I was hollering at him and I remember pulling him forward and hitting him on the back (I think I thought he might be choking). I was crying and reaching for the phone to call 911 when he came to and said something to me - he wanted to know what I was doing. He doesn't remember anything of it! This was 4 days ago and I'm still a nervous wreck! Anyone else have symptoms like these? I've read nothing of this description, but that doctor seems to think that's what he suffered. Would love to know more about this.....
    Anonymous 42789 Replies
    • January 7, 2011
    • 02:14 AM
    • 0
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  • I was just diagnosed today with vasovagal. I often faint and become very tired even with very little physical activity. I have black outs where i dont always go unconcious but i get a weird rush and my head feel tired. I went to the childrens hospital today and got lost of tests done. I had a heart ultrasound thingy or something and they said it looks normal. I still have to see a nuerologist and a kidney specialist just in case. Also, one thing that doesn't make sense for somebody with vasovagal, my blood pressure is extremely high. Another weird thing is that my blood count was high too during that test but I am getting blood drawn because the first time they only pricked my finger. My doctor recommends one thing that is different for most of these kinds of patients, he said to lower my salt intake since my blood pressure is so high....interesting
    anjipeace 2 Replies
    • January 20, 2011
    • 01:25 AM
    • 0
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  • Im only 13 and i was just diagnosed with vasovagal last tuesday..it just started with really bad cramps and a bad migrane and eventually i started to hear ringing in my ears and i got really dizzy and clammy..all i remember was sitting down, then waking up with my teacher shaking me to wake up. Apperently i just fell down on my freinds lap and she started to scream because i was pale and my eyes had rolled back so she thought i died.. my mom took me to the hospital and after a bunch of heart tests they just said that i had a vasovagal attack. does anyone that has had it for a while know if it will happen again?? Yeah u might. I am also 13 and i was diagnosed today. I have had these attacks more than once and its not fun. I hit my head against the wall and when i woke up, my legs were shaking and I had a conussion. It sucks doesn't it?
    anjipeace 2 Replies
    • January 20, 2011
    • 01:30 AM
    • 0
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  • unfortunately, they continue....have had for almost 7years, some days arew better than others.....watch out for chf and pay attention 2 your triggers...ice your left neck, wrists and back of neck will help during if u have an early enough warning......
    Anonymous 42789 Replies Flag this Response
  • I have never actually lost concious yet, but I have ALL the symptoms leading up to it. When I was a junior in high school I had a myriad of tests done by a cardiologist that showed normalacy. I was later diagnosed with gastroparesis, which turned out to be caused by a damagaed vagal nerve after a horrible bout of the stomach flu years back, so maybe it's possible that I could have the same disorder? I'm 24 yrs old and it has been a nuisance to my job performance and it's happened once while I was driving- scary. My question is should I spend more money on cardiologists or go see a neurologist?
    Anonymous 42789 Replies Flag this Response
  • I have never actually lost concious yet, but I have ALL the symptoms leading up to it. When I was a junior in high school I had a myriad of tests done by a cardiologist that showed normalacy. I was later diagnosed with gastroparesis, which turned out to be caused by a damagaed vagal nerve after a horrible bout of the stomach flu years back, so maybe it's possible that I could have the same disorder? I'm 24 yrs old and it has been a nuisance to my job performance and it's happened once while I was driving- scary. My question is should I spend more money on cardiologists or go see a neurologist?I would go to the cardiologist- he/shee will be the one to do the testing, diagnosis, treatment, & follow-up. I have neurocardiogenic syncope. My first time fainting was at age 5 while my mom was doing my hair for school. I remember many mornings that I'd have to sit on the toilet and take a break. I skipped a few years and fainted in 4th grade after slamming my finger in a door. And then in junior high basketball practice (the doctor's thought my blood sugar was dropping- the treatment was candy before practice. I made some enemies that way). Another time in FL when I was 15- I hadn't eaten much and was out in the sun too long. I had lot of near misses in the following years (usually from getting too hot, standing too long, & not eating), but was able to manage better once I learned the symptoms of a faint coming (feeling hot, tired, dry mouth, heavy head, & seeing red seconds before dropping). Several spells were after getting up 'too fast'; I would lose vision for a bit & everything would go red. One time, my legs started jerking up & down on their own (like I was high stepping or marching) while I was standing- that was strange, apparently those were myoclonic jerks. Fast forward to age 21, I fainted getting out of the shower. I saw the doctor after that and they suggested vasovagal but did no testing, no treatment- just avoid hot showers.... I began feeling completely ill (tired, dizzy, weight gain, plus close to 20 other symptoms- but NOTHING like the fainting spell symptoms), every day, in 2009. Through a myriad of testing (that just now showed a hormone imbalance), they did a tilt table test and I got the neurocardiogenic syncope. I have chosen not to do the treatment because I tried a beta blocker and it wiped me out- I couldn't get out of bed. My symptoms seem to be getting worse though, so I may have to start treatment soon. In January, I fainted in my house after feeling nauseous. Then in May, I ended up on the bathroom floor at a restaurant during a bachelorette party in Chicago. 2 weeks ago, I was on vacation and again ended up on the bathroom floor at a restaurant. Just 4 days ago, once again in a restaurant & ended up laying down on the bench at the table. And today, I've had 2 spells that I've come out of just by lying down. Hot temperatures and alcohol have been my triggers these last few months. I'm also guessing the progesterone I'm taking is playing a factor for me since they say pregnant women w/this get worse during pregnancy (when progesterone levels are higher). So, taking it easy for now.Please do get the diagnosis; this is far less scary once you know what it is!
    Anonymous 42789 Replies Flag this Response
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  • It's been a while since this thread has been posted to, but I found it after I had a vasovagal syncope episode and wanted answers.Does anyone else find that these episodes may be brought on by certain things? I never thought of myself as squeamish, but it seems like certain things will "set me off". I too have had numerous tests by doctors and all of them have come back negative. The tipping point was one day in class when I fainted in front of everyone. Now I think being in class may trigger some symptoms...I feel like blood may be pooling in my legs and I get a little agitated---I can't put my finger on it, but I"m sure you know the feeling. Usually I can calm myself down by using deep breathing and focusing on something else. I am just sick of it, though. Since my episode in class I'm always worried that it's going to happen again. I've thought about treating it though a healthy lifestyle (exercising, eating right, etc.) or possibly through meditation. Has anyone heard of any of these methods working? Any advice would be greatly appreciated!
    Vasovagal32 1 Replies
    • November 14, 2012
    • 06:31 PM
    • 0
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  • hey yall, im 17 years old and have had symptoms of vasovagal ever since i could remember..ive had countless EKG and wires attached to my chest for 24 hour time periods.ive seen countless cardiologist and ive been to a nuerologist for some test done but they never found anything. i was a frequent runner from 7th grade up through my junior year so i had a slower heart beat. ive fainted many times in the past and have gotten frusterated because time and time again i kept hearing "we dont know why you have these episodes" "nothing showing up" and two weeks ago i sat down for breakfast (this part i dont remember) i fell back in my chair with my eyes wide open and mouth breathing really loudly.. my dad picked me up and brought me to the couch and asked me if i could hear him and about 5 min later i could i just could not respond in anyway..i felt useless..i was rushed to the hospital in the ambulance and they diagnosed me with vasovagal...my symptoms have gotten worse..i have night sweats and every time i get up even if its slowly i get really dizzy..tonight i was walkinn and i was in my room by myself when i started feelin fuzzy and before i knew it i started to fall over but i caught myself on my dresser before i completely went under...i couldve hit my head and died tonight..and no one wouldve been there to save me because i was by myself..im so scared for my life..everyday i live with chest pains that keep gettin worse and worse...i dont know what to do anymore..
    taramarie 1 Replies Flag this Response
  • I, too, was diagnosed with Vasalvagal syncope! It's frustrating talking to a doctor about it at times because most of the time they brush it off or act as though it's not that serious! I beg to differ! It's frustrating to get that feeling of fainting almost as scary as actually passing out! I have done both. One time I was just sitting up doing some paper work, nothing too strenuous and my husband said I just fell back and hit my head on the couch! When I came too he asked if I wanted to go to the ER and was I okay? I said I just wanted to go to bed! We had pulled an all nighter so I guess lack of sleep was my trigger at that time! Last night, I had another episode and ended up in the ER! It's scariest how they come on all of a sudden and you just can't control when it happens out of the blue! I hate being woken up from sleep because of shortness of breath! I also struggle from Obstructive Sleep apnea and haven't been on my CPAP machine in a while so that may be a problem, too! Also, last night I had a couple drinks at a Halloween party! I woke up because of pain in my foot this time and it made me start having nausea, then trouble breathing and then I started feeling dizzy and light headed! I felt like I was about to throw up seriously and I really thought I was having a heart attack! I stood up to get an aspirin and that's when it really hit! I could not speak for a while! I told my husband I didn't feel good and thought I was dying and asked him to call the ER! We only slept 2 or 3 hours by then! I went to the ER and they said my blood pressure is low! All my vitals looked good other wise! Even my anemia is a 10, when it's normally a 9 or lower! My potassium was good when it is sometimes low too! At my lowest blood pressure I had an 82/62 I believe! My pulse got down to a 62 as well! I usually drop really low at nights which scares me! It wakes me up every night! The ER gave me fluids and tested everything and finally discharged me telling me to follow up with my Primary doctor, it looks like I'll have to get a doctor again! Sigh. I, too, think it's frustrating that not many people know about this or anemia/thalassemia! I think sometimes I know more than alot of doctors! I will say a medical term and they always ask, "What's that?" It's odd to hear these professionals ask about terms they should know! I hope to see more knowledge about this in the future! Until then, we are the forerunners and leaders, grouping together to share our stories and spread our own knowledge and experience! I think the most annoying part of this disorder is that you don't know when it will happen or why! I am starting to see similarities in episodes but it's a long road because so many things trigger these attacks! I also have allergies and had an ASD repaired in 2004! I'm only 31 and started my problems at birth! My biological family has a long history of medical problems which are hereditary! I have stroke, breast cancer, early menopause and cateracts to look forward to in the future!! Wish I could feel well and run without the fear of passing out again like so many can enjoy! Any more advice would be great! Is there any medications that can be taken? My doctor once prescribed me atenolol when I was a teen! He had me on a quarter tablet because I was so small! Has anyone else heard of or had success with this medication? Can this cause death? I get so scared and anxious and that only makes things worse! Any support would be greatly appreciated!
    angelgirl1982 1 Replies
    • November 2, 2013
    • 08:24 PM
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  • I had two major abdominal surgeries in 2013, first an emergency colon resection with a colostomy, then four months later a reversal of the colostomy. By January of 2014 I started with the episodes. It starts with ringing in the ear, the alternating spinning and blackness. I cant talk but am fully aware of everything going on around me. I get extremely hot and sweaty and sometimes vomit. The doctors think it is vasovagal, but keep shuffling me between my PCP, surgeon and neurologist. Nobody can give me answers. Does this sound familiar to anyone?
    Anonymous 1 Replies Flag this Response
  • Is extreme leg pain/cramps normal after passing out from this?
    Anonymous 1 Replies Flag this Response
  • Unofficial self diagnosis of defecation vasovagal syncope, here. Well, I should say pre-syncope. I've been dealing with this for years and I haven't fully passed out yet, thank God. Here's what happens with me: I'll wake up after 2-3 hours of sleep with a riotous, gassy colon and a general feeling of "something isn't right." If I don't do anything, it quickly escalates into extreme anxiety, heat intolerance, tachycardia, palpitations, light-headedness, and a full body cold sweat. Standing up makes it 10x worse, but I often have to to get to the bathroom to have a bowel movement... after which, everything returns to normal. I have found that if I can pinpoint pre-syncope symptoms, I can delay or stop full-syncope by immediately laying down and putting my legs and arms up into the air. I usually lay on my bathroom floor with my butt and legs upright against the wall. Sometimes it takes up to 5 minutes, but doing this maneuver usually brings my heart rate right back down and allays (1/2)
    Anonymous 1 Replies
    • January 21, 2016
    • 11:26 AM
    • 0
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  • all the other unpleasant symptoms. Putting your legs (and arms) up forces blood back into your core, which means more blood can be pumped back into your heart and made available to your brain. This works better for me than simply crossing and squeezing my thighs, or putting my head down between my knees, so I try to do this whenever the situation allows. I just wanted to pass that along in case someone else didn't know about it. Dealing with a faulty vasovagal response is taxing enough- but knowing I have this maneuver to help me out of a fullblown episode in just a few minutes makes it a little easier to swallow! (2/2)
    Anonymous 1 Replies
    • January 21, 2016
    • 11:58 AM
    • 0
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