Supraventricular Tachycardia - anyone with this?

[Elsapelle]

I'd welcome some support/chats from anyone with or who has child with this condition. My nearly 4 yr old son has it and is on medication
Thanks!

[Jen1978]

i have suffered with SVT on and off since I was a teenager. It is really scary when it happens, I had some medication for a while - think it was verapamil. not on meds now. Find that if I have a really cold drink and hold it in my mouth this helps slow down my heart rate, also carotid sinus massage in the nexk helps, but you need to be shown how to do it by a doctor.

[CantSleepWontSleep]

I've had a few attacks of this, but no cause was found. Doctors advised that putting cold water on face was a great way to try and stop it, but I had one attack 20m underwater when surrounded by cold seas!

Thankfully no attacks recently.

[Elsapelle]

thanks for the responses Jen and CSWS. My DS' SVT seems pretty stubborn - often carotid massage and ice on face/neck doesn't work. last episode ended up being for 7 hours and even local hospital couldn't get it down! So was rushed by emergency ambulance to Alder Hey where they injected him with adenosine. He's on a drug called Flecainide now but i don't know of anyone else on this drug. Glad you've not had attacks recently!
Jen is Verapamil a beta blocker? Any side effects?

[lucykate]

i have this condition, was born with an extra nerve in my heart which sometimes kicks in, top speed is about 200 bpm. i grew up in formby so was seen at alder hey as a child for diagnosis. i used to have quite a few attacks as a child, some just seconds, or minutes, a couple lasting hours. they used to stop by me just calming down, my mum used to help sooth me through an attack.

once, though, but i was a bit older and not living at home, i couldn't get it to stop, and ended up going to hospital and having an injection to stop it. i did take verapamil once (i don't think verapamil is a beta blocker, beta blockers are usually taken daily, i only took verapamil to stop an attack), i didn't like it at all. normally, when it stops, it's straight away. the verapamil slowed it down gradually, i remember feeling really strange when it was happening, quite scared and ill for the next 24 hours.

the attacks are much less frequent nowadays, if it's ever a problem again, they now do keyhole surgery to burn away the extra nerve. i didn't have any issues with it during childbirth either (not that your ds will have to worry about that!) hth

[Elsapelle]

thanks lucykate, that's really helpful to have a childseye view as well as adults! Yes, my DS heart tops 300 bm and it must be so scary... he has the extra nerve pathway too they found. I think the drugs can make them feel quite strange. It's hard to know how he's finding it as he's only 3. I'd like to find out more about the ablation procedure - it sounds good for stopping it once and for all, but i have a feeling it's only done on adults?

[lucykate]

i think it depends on how much it is affecting his life as to whether they'd do the op or not. i've been told, as it's not really a problem anymore, for me, it's not worth having an ablation atm, as obviously, it does come with some risks.

when i was having an attack, i'd go very pale, lips go blueish and feel quite light headed, it doesn't hurt but can be quite disorientating. when i was little, i'd have about one attack a month, now it's abut one attack a year, which only lasts a few seconds, a minute at the most. my worst one was 5 hours, i was about 14, and it started at school, i was quite drained by that one.

i remember the day i took verapamil, i had a job interview in liverpool and it started in the morning. i couldn't get it to stop so took some pills, then a second lot, 20 mins later and eventually it worked. but i was so wiped out, i fell asleep on the train and missed my stop. made it to the interview in a taxi instead but i can't remember anything that happened after that!

[dooneygirl]

4? How scary. Poor little guy. Mine surfaced as a teenager, and it was scary enough then. They got an episode on the heart monitor where I went over 300 bpm. It would make me pass out every time, and nothing they suggested made it stop. I've had several concussions because of the SVT.

I was on verapamil, too, but didn't like it much. It made me bruise like crazy, and seemed to wipe me out. Eventually I took myself off of it (was an adult by then) and just dealt with the episodes, because it was easier to deal with being wiped out the rest of the day after an episode happened than being exhausted all the time.

I had the extra path, too. They talked about doing an operation, but did the "wait and see" approach, because I never got officially diagnosed until I was an adult, and they said that the older I got, the less frequent the episodes would be, which has definitely been the case. I've only had one in the last 7 or 8 years, and I never thought I would even go a few months without having one.

Hope they can find something to help your DS.