Does anyone here suffer with Vaso Vagal syndrome or know much about it?

[Coco'smommy]

I ask because over the weekend my 12 yr old son was hospitalized and dx with V.V./syncope. I have not found much info on the internet and the neurologist at the hospital explained the best he could but I am just not satisfied with the info he gave me. We do have a f/u appt with his PCP tomorrow afternoon and I"m sure that will be a lot of Q & A's. I just thought it would be interesting to find out how other's handle this in their daily lives. It appears like this is going to be a real pesky situation to deal with. It was pretty scary friday as he had a lot of neurological deficits and was unable to work his entire left side and couldn't see out of his right eye. It did come back on Saturday and the doc said they call that transiant neurological deficiency. Scared the hell out of me to be honest with you. Anyway...if anyone is familiar with this syndrome and has any input, I'd really appreciate it.

 

[jaimie]

I was diagnosed with Vaso Vagal Syndrome when I was pregnant although what you describe is not what I had. I would pass out everytime I would lay down or sit down without leaning to the left side. Then I would get nauseated and pass out-I would get really flushed. That is what a true Vaso Vagal Syn is, the large blood vessel that runs down the right side of your spine gets compressed and you pass out. Mine was from being pregnant and the baby laying on my spine. BUT just a few months ago (mind you I am NOT pregnant right now) I had another episode and they falled it benign positional vertigo...pretty much I was dizzy and they had no idea why. It lasted for 3 WEEKS! It was horrible! Nausea, vomiting, SEVERE dizziness I couldn't even walk staight-literally. I wonder if he doesn't have something else going on!?? Make sure you get another opinion! Take care and I hope your son gets well soon!

 

[Coco'smommy]

Thanks Jaimie for the reply. He was having other symptoms, nausa, dizzy, lightheaded. Any time he would sit up or stand up, he would pass out. If he stood/sat and closed his eyes, he would immediately fall backwards. I'm sure that the dx is correct but I just don't know much about it. They are considering other tests, such as tilt table, etc. Because it can be related to a cardiac issue as well. And if a prolonged VV episode occurs, there will be neurological deficits or so that's what I've read thus far as well as the neurologist telling me that. It did fit right in with what was happening. He had 2 CT's & MRI done, nothing showing in those or blood work so there were no infections. It's very puzzling and I just wonder how ppl handle this on a day to day basis. I sent him back to school today and he was feeling OK but worried about it happening again. He has had three episodes in the past month. We are trying to figure out if there is a certain trigger that brings it on. He also begins to suffer with panic/anxiety when this happens. His way of dealing I suppose. That only makes it worse because his hearts starts racing and beating abnormally. We will continue to keep track and will be keeping in close touch with his pediatrician. She was the one who initially sent us to the hospital anyway, she's great and I'm confident that she won't let anything fall through the cracks. Thank you for the response, I guess I should have left more details. Just trying not to make my post tooo long.

 

[jaimie]

I started taking AntiVert and Zofran. That did the trick for me! Ask the Dr about it. It is the most aweful feeling! Oh God I feel for your son. It is good that the CT and MRI's are normal, have they done an EEG yet? I went to see an ENT and he is the one that put me on the 2 meds above. The Antivert is for the dizziness and the zofran is for the nausea, but the 2 of them together made me feel almost normal.
I am sorry your son is going through this. It was hard for me to even function at all.

Take care and please let me know how he does!

 

[Coco'smommy]

They did an EKG before we left the hospital but of course we didn't get the results right then. I'm hoping they will be available at the doc appt we have for f/u tomorrow afternoon. I will let you know how it goes. He did just call and has made it home from school. He said he was feeling alright, hadn't been dizzy today but his legs were feeling really weak still. I bet the fatigue and lingering affects of weakness will hang around awhile. He had quite an intense episode on friday and it lasted all day non-stop so I expect it will take some time to get over it. Thanks again for your response, I'll let you know how he fares.

 

[jaimie]

There is a difference between an EEG and an EKG, EEG is for the head and EKG is for the heart. They did an EEG on me to make sure I didn't have anything else going on in my brain.

 

[momstaxi]

Sometimes passing out can be a sign of problems with either the heart or the brain. certain arryrthmias(abnormal heartbeats), seizures,ETC. So sometimes an EKG(ECG) and an EEG, as well as other tests, may need to be done. Hope your son is doing ok and that they get to the bottom of it. Although sometimes they never do figure out the cause. Good luck.

 

[Coco'smommy]

Just an update - we attended the f/u appt yesterday and the pediatrician referred us out to a cardiologist for further assessments and testing. She started to send us home with a heart monitor/event recorder but then said on second thought she would be more comfortable if we went to the cardiologist. So....I guess that's the next step. She restricted his physical activities and informed the school that he was not to participate in PE until he has been cleared by the cardiologist. I don't know when our appt is yet. They made the referral and the cardiologist's office will call to set it up. She said however, that she wanted him seen asap, not longer than 2 weeks out. So.....not that my mind is any more at ease but I look at it like this: if something is wrong, we can get a dx and get to treating it. If nothing is wrong, then we can have a clear head about that anyway. there is an extensive history of heart problems on my husbands side of the family. Mostly in the younger individuals (40 & younger). there have been two children pass away on that side of the family with heart related issues. That makes it all that much more important for us to stay on top of everything.

 

[momstaxi]

I totally agree. Much better safe than sorry, esp. with your family history. Hopefully it will turn out to nothing serious, but why take the chance?
Keep us posted. Positive boxer vibes coming your way
Michele

 

[Coco'smommy]

Got an appt

Brad's appt with the Cardiologist is on 11/15 down at the Children's Hospital. He has had a couple of dizzy spells but thank goodness nothing as severe as when they hospitalized him. He's hanging in there but still having some anxiety as far as having it happen again like it did. That really scared him. I think he just felt so horrible that he had all sorts of things running through is mind. Hopefully we'll get this sorted out and can find a way to manage it so he's comfortable.