How many is too many?

[dldaisy]

How many SVT episodes are too many?  I've had periods where they've occurred multiple times a minute for hours, but seldom a single episode that lasts more than a couple of minutes.  So, how does one know when to legitimately worry?

[Mom2four85]

That is wonderful news for your family and hopefully they find what is wrong with your son and he gets the right treatment.

Just let me know if you need anything else or have any questions; and don't worry about venting - we all understand and it's part of being a community =)

[Littlecosmocowgirl]

I just wanted to let you and the other readers know that our prayers were answered ! We are going to be going to a doctor in Houston pretty soon, well as soon as I can work out all the financial stuff. I am so excited ! The doctor seems really positive, and ready to get started testing. I have to pinch myself lately, I am so happy that we found one. But, they also told me if it's not cardic that they  would talk to the other specialists there and we would get it figured out. I told him that would be wonderful, because I would love to be able to come home with a diagnosis, treatment, and be on his way to recovery. I know everything happens for a reason, and there is a purpose for everything that happens. I just really praise God for him being in our lives , because without him there is no telling what this would have done to all of us, and I have learned so many things through all of this, and I am thankful for them. We have so many praying for my son and our family , and I just wanted to say thank you very much ! I truly believe that with God you can get through anything even though things are tough and sometimes you can't see the light at the end of the tunnel. I will definitely keep you posted on everything, and please keep me posted of yours as well. I am so thankful that I found this site, it has helped me more than you know. Also, thank you Lisa I really am thankful you have talked to me, and let me vent, and for the information you have given me
                              Feeling Much Better Christian Momma,
                                           Thank You and God Bless !!!

[Mom2four85]

There is so much information out there about ANS dysfunction and Dysautonomia.  If you haven't, look on the dysautonomia forum also, there's a ton of info here also -

http://www.medhelp.org/forums/Dysautonomia-Autonomic-Dysfunction/show/266

http://www.medhelp.org/health_pages/Neurological-Disorders/Autonomic-Dysfunction--Dysautonomia-Index-Page/show/857?cid=196

On each of the sites, there's lists of specialists; some you just have to look through alot of info to find.  If you have insurance, most cover the visits and treatments, especially with the new insurance plans in effect.  If you don't have insurance check your state plans for children's insurance.  FL has Kidcare and they've just upped the income limits where alot more children can get more affordable insurance.

If you go to the dys forum here, you'll find lots of us with stories very similar to your sons or we have children who are going through some of the same things.  

As for me, I've fainted since I was 9, but it took until I was 42 for a doctor to acknowledge that fainting isn't "ok" as I've been told all my life.   My NCS/OI is connected to my heart problems somehow that several doctors still have not been able to figure out... I'm still searching for alot of my answers =)

I've suffered low bp; crazy heart rates that plummet, then sky rocket all my life and my heart stops when I pass out for some reason.   I've never had anything wrong with my blood levels; all normal except a low sodium reading once, and my kidney functioning has been a bit low (may be attributed to ans problems).

I've been told too many times there's nothing wrong with me and I had 2 or 3 doctors tell me as an adult just lose those 30 or 40 lbs and you'll be fine...really LOL  I fooled them :P

hopefully you'll find some answers soon for your son so he can get the help he needs and find some relief from some of his problems =)

let me know if you have any other questions or need help - feel free to pm me

[Littlecosmocowgirl]

I have been reading that site, and wow at the information on there. And I was reading all day yesterday, but I do know we can't afford to go to Ohio. So, I am going to call to see if he can tell me who in our area would be able to help us. If you don't mind can I ask you some questions about how this has affected you, how long you have had it or if it's gone now, and so on? If that is too personal I completely  understand.
                                       Thank You and God Bless,
                                     Worried Christian Momma

[Mom2four85]

Dysautonomia is an umbrealla term - it encompasses a whole multitude of symptoms  that deals with the autonomic nervous system; hence the term autonomic dysfunction which is what it sounds like he has, not just vasovagal syncope.  Alot of his symptoms sound like what I've suffered from and when I talk to some dr's they act like I have 2 heads lol they have no clue what Dysautonomia is.

It sounds like he has a mix of NCS or OI - neurocardiogenic syncope and orthostatic intolerance or hypotension mixed with PoTS; Postural orthostatic tachycardia syndrome.  Many times we ANS patients have crossover symptoms & syndromes which confuse and frustrate normal doctors, which is why it takes so long for some to get a proper diagnosis.

Because he has so many functions that are being affected, please have him checked out by a ANS/Dysautonmia specialist. The ANS involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions and over one million Americans are impacted with a primary autonomic system disorder.

Here's a good article that explains a bit more: http://heartdisease.about.com/cs/womensissues/a/dysautonomia.htm

"In people suffering from dysautonomia, the autonomic nervous system loses that balance, and at various times the parasympathetic or sympathetic systems inappropriately predominate.

Symptoms can include frequent vague but disturbing aches and pains, faintness or  fainting spells, fatigue and inertia, severe anxiety attacks, tachycardia, hypotension, poor exercise tolerance, gastrointestinal symptoms such as irritable bowel syndrome, sweating, dizziness, blurred vision, numbness and tingling, and -- quite understandably -- anxiety and depression.

Sufferers of dysautonomia can experience all these symptoms or just a few of them."

The NDRF is another great place to read and find help http://www.ndrf.org/  Dr. Blair Grubb is the leading authority on ANS problems and their office is a huge help in getting the help you may need.

[Littlecosmocowgirl]

Thank you for the information, and I looked at the site. My son was told he had Vasal Vagal Syncopy , and I researched that as well. The symptoms that my son has are more than that.Also, with Vasal Vagal if you get up too quick you could possibly faint or by pushing during a bowel movement you could possibly faint as well, and this has never happened to him. My son is in football and weight training so he is constantly getting up and down and he has never had an episode during any sports. Also, we have tried the Vasal Vagal maneuvers and they haven't worked on him. We lay him down immediately, and put is feet on my chest, even making him bare down, and although he has laid there for 20 minutes he still passes out. We also have tried the medication for Vasal Vagal , salt pills, powerade with salt in it, and even potassium pills, and all has failed. The only symptom my son has that is in common  with that is fainting, the rest doesn't fit. We have also tried an anti-depressant one doctor suggested, and that didn't work and he still passed out.Actually, the anti- depressant added symptoms rather than helped. The last cardio dr we went to said he didn't have Vasal Vagel. Each doctor has not agreed with the last on anything we have done yet. I have faith there is a doctor out there that can help us, and God will put him/her in our lives. Thank you for your suggestion, and any others please don't hesitate. I hope and pray that everyone gets better on here, and you all will be in our prayers!
                                     Worried Christian Momma
                                    Thank You and God Bless You All !

[ChatterAlly]

God go before you! Wow, so much to deal with.  I agree with all the other posters are saying.  You have got to get to the right doctor.  Keep us posted. Ally

[Littlecosmocowgirl]

I agree and I'm pushinltig forward and making some doctors mad, but I want answers. He's very athletic in football, track, pole vaulting, and wrestling, very out going kid, and such a happy kid. It's just this that's trying to hold him back. He's released to do all the sports, but the school is trying to slowly shove him out, to where he has to be home schooled, and believe me I'm fighting that. He needs as much a normal life as possible with this passing out going on, and taking him out of school is not the answer it would make matters worse for him. As far as the learning hospital, we tried one here and same results as the other hospital. The doctors are all gung ho at first , then lose interest or something or just try to label him with something he has but the diagnosis doesn't fit. Also, after he passes out he sometimes looses weight, the most he has lost has been 5 pds. So I have started him on protein shakes to keep his weight up, and the pediatrician said I could do that, and his appetite is great right now. But, when this first started he would lose alot of weight , and his appetite was horrible for a 15 yr old growing boy. We just not have had alot of luck with doctors throughout all of this. They don't listen to everything, and they don't admit when they are wrong or that they don't know what's going on. Thank God I have God in my life, and in my families life! I talk to my son daily, and we pray and just stay positive that God will send someone to us that will diagnose this and get it fixed or atleast give us a treatment plan for this so my son's life can return to as much of a normal life as it can be. I just know that the hospitals here won't see us anymore because it isn't life threatening, but yet they don't tell us where to go for answers. I never thought we wold hear the words " there's no need to come back anymore ". I told him that he can't drive until we figure this out, and no going anywhere without his father or I until we know what's going on. I am researching doctors right now so God willing the right one will return my call.
           Worried Christian Momma

[Mom2four85]

opps sorry my comment was for you about your son =)

[Mom2four85]

please visit the dysautonomia section here - it's to the right on related communities

he needs to be seen by a specialist that deals specifcially with dysautonomia and autonomic dysfunction; which can be perplexing to most normal doctors and misdiagnosed for many years

also, dinet . o r g  or the DI net foundation has alot of info and support for Dysautonomia - I know on the forum here there are parents whose children are going through what your son is and can recommend dr's

[ireneo]

Having a few times of fast heart rate in a structurally normal heart is OK. But passing out, staying out for that length of time is NOT OK. How is he supposed to live his life like that? Definitely go for another opinion. A medical university is a good choice since they enjoy complex cases and are generally up to date on the latest treatment options. Cleveland Clinic is considered the ultimate place to go for heart problems. I understand there's an excellent heart clinic in Texas, can't remember which city now. But do continue asking the questions, pushing the medical staff until they give you solid answers, not just guess work.

[Littlecosmocowgirl]

I'm  writing because my 15 yr. old son has been passing out this October will make a yr. We have been to 3 Pediatric Cardio Drs, and 2 Pediatric Neuro  Drs, been to the 2 hospitals that we have here, and were told not to come back because it hasn't been life threatening or fatal. We have had so many tests ran on him it's not even funny including EEG(NORMAL), EKGS, ECHOS, TILT TABLE TABLE TESTS, LOOP MONITOR, HAULTER MONITORS, BLOOD TESTS, and I could go on. He passes out randomly, lasts anywhere from 15mins-2hours, sometimes he gets a warning it's coming and sometimes not, hard to breathe, chest hurts, rapid heart rate, palpatations, dizzy, shakes before passes out, and lightheaded. While he is passed out he tries to come out of it but his chest hurts so bad he passes back out, and he will be in and out like that, also grabbing his chest because it hurts so bad during the episode , and sometimes his eyes roll into the back of his head, and heart rate goes as high as 250bpm. After he finally starts to come out of it he sometimes is in a drunk state then is severely tired and will sleep the rest of the day.Also, while sleeping his heart rate will go all the way down to 25bpm. No one knows whats going on, and has been labeled with VASAL VAGAL SYNCOPY( which just means fainting), anxiety and depression, also accused of doing it himself. Neuro says its not neuro, cardic says its not cardic. I took him to the pulmanary dr thinking could be his asthma specialist said its not the asthma and hes getting the right treatment, child therapist says its not mental. It seems like no one knows what it is , but tries to hurry up and label him to get us out of the office and yet hes still passing out. I have done alot of research and the PSVT fits all of his symptoms, I tried to show the last cardic dr the stuff I found and lets just say it didn't go well. I'm needing help please! If you know of anything please respond. We have been okayed to go ahead and go out of state if needed to a specialist. We are looking at either Dallas or Houston, but we know nothing about the Drs at either place, and we don't need the run around anymore.
           Worried Christian Momma
                Thank you and God Bless !!

[dldaisy]

I don't know what type of SVT it is.  I was just told SVT.  The echo report doesn't say either.  I also have PVCs if that helps.

[ireneo]

Do you know what specific type of SVT you have? I used to have PSVT (tachy) times that would run about 45 minutes at a rate of 190 or so a few times a week. I lived like that for decades thinking it was just annoying. When I saw my first cardiologist, he got grumpy when I was hesitant to have an ablation and he simply said, "I wouldn't live like that!"

So if it's a benign form of SVT and it doesn't interfere with your ability to do daily tasks, then it's not a concern. I still have PSVT a few times a week but they're very brief, usually less than a minute. I'm considered "cured" according to the post ablation notes.