Anxious starting Tildiem for SVT’s

[Gracey888]

I’ve had SVT’s for many years. Made worse I believe by long term steroid use for bowel disease. The latest episode landed me in resuscitation Monday night after near two hours at home with 180Bpm. I know they can go higher than that. In the end I needed an injection (not adenosine as asthmatic), as the two modified vagal manoeuvres made my HR higher. Within a few minutes of the injection I went into sinus rhythm although still up in the 100’s. If that hadn’t worked they were going to do something electrical??? A cardiologist called me the very next day and has put me on Tildiem for now, but urging me to have a catheter ablation. He’s referred me to an electrophysiologist? to talk in more detail about what to do next. I’m not well in other ways (gastritis/reflux) which has resulted in shortness of breath and intense pain, which has triggered many panic attacks for weeks (were not sure if I had the virus in March), which triggered all the stomach/breathing issues as my asthma played up a lot too for the first time in years. I’ve not slept properly for weeks as I wake up with palpitations and air hunger and then the panic attacks start (I’m terrified of all these symptoms and the darn virus). Basically I’m an absolute mess and finding it very very distressing! I’m feeling very anxious this morning as just taken my first tablet. I’m anxious as I’m one of those that gets high sensitivity to medications. I just needed somewhere to reach out.

[Kristin1812 Heart Star]

Hi Gracey. I’m sorry this is all so distressing. You do sound terribly worried, and you do have quite a few different health issues. We, here, are really best focussing on heart issues. It’s what we know about!

But you also seem to have a Cardiologist who is concerned, and has referred you on to a Cardiac Electrophysiologist to consider an ablation. which must be very reassuring for you.

But I’m wondering if there is a particular heart question or observation you have for us that we might be able to help you with?

There is a lot of experience here among the members, and the BHF nurses are always on line (office hours mainly) if you need more technical/medical information or advice.

I’ve been to a Cardiac Electrophysiologist, and he picked through things with me, and explained options etc. very clearly. I hope yours is helpful, too.

[Gracey888 in reply to Kristin1812]

Thank you for your reply. I think it was more going into the unknown today with another new drug 😔 . I’m just too anxious to look at the leaflet in the box (because of side effects) & wondering when I’d feel the helpful effects of the medication. My daughter said two weeks! I suppose I’m just looking for reassurance as I’m so exhausted and traumatised by the last few weeks events and the horrible symptoms that barely ease. My chest area and heart feels like it’s jumping all over the place.

[Kristin1812 Heart Star]

Sorry, I should have sent you this...Heart Helpline team on 0300 330 3311 Mon-Fri 9-5pm or email [e-mail]

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I’ve had SVT since the age of 25 (I’m 36 now). My first episode came completely out of the blue, having never had any palpitations ever, and I was taken into resus having been stuck at 240 for the better part of two hours. Resus is actually ‘standard’ for a bad episode of SVT, the reason being that if medication ultimately doesn’t work, the next option is to sedate and use a defibrillator to achieve the same outcome: lowered HR. It’s worth noting that with SVT, you’re actually in normal sinus rhythm throughout, it’s just the rate that is faulty. I spent almost a week in hospital with the first episode, mostly because if I even spoke a word my HR shot up towards 200 again (although it came down quickly), and they wanted to see if they could find a cause for the SVT. To the best of their understanding, like many people, mine turned out to be idiopathic. I was wopped on sotalol, a betablocker, which was then changed to bisoprolol, and I stayed on that for 8 years, before changing to verapamil in 2018, which is a calcium channel inhibitor the same as Tildiem. I’ve had no side effects at all, and it’s worth remembering that patient information leaflets list every side effect that’s ever been reported by someone taking a substance, not just the things that they know for sure it causes. Ask any medical professional and they will tell you that some of the things listed will categorically be coincidence rather than the medication being to blame, but in an increasingly litigious society, the pharmaceutical companies want to cover their behinds.

I had a second major ep requiring adenosine in 2015, and for the first 5 years had dozens of mini episodes of 160s to 180s, sometimes lasting 3 or 4 hours, but was never offered an ablation even though I would have jumped at the chance: take that they’re offering you one as a good thing, because many people find they have brilliant results. Neither vagal manoeuvres or massage do anything at all for me, and although both paramedics and A&E try them as a first line, I’ve yet to actually meet anyone for whom they work. The last 4 years have been much better from an SVT perspective, mostly because after a really nasty episode seemed to be triggered by covonia cough mixture I researched the condition properly and discovered that SVT is medically proven to be triggered by a number of common foods and substances. The things known and recognised to cause increased ectopics and potentially trigger SVT are:

Caffeine

White chocolate

Dark chocolate

Ginger

Cigarettes

Alcohol

Some medications, including some asthma inhalers, cold and flu remedies, cough mixtures, and adrenaline based anaesthetics

Insufficient sleep

Stress

Not everyone will be sensitive to everything, but I discovered caffeine, ginger, white chocolate, dark chocolate and pseudoephedrine (which is a drug found in a number of cold and fu remedies) all triggered ectopic beats and episodes of SVT for me. My second major episode was actually caused by lidocaine for a filling, so my medical notes also state I should have adrenaline free local anaesthetic. Cutting all those things out entirely from my diet - and getting more sleep - made a dramatic difference, and although I still get a lot of palpitations and my hr is very reactive, I haven’t had a single bout of SVT since 2016. This is something I always encourage anyone with SVT to look at as it’s something easy to do and potentially will make a huge difference. Even if they’re taking medications that can’t be stopped (like inhalers) people can still potentially significantly decrease episodes if their SVT is sensitive to some of the other stuff like caffeine.

Hope some of my rambling helps.

[Palpman]

The type of SVT you have is likely AFlutter as the doc gave you a chemical Cardioversion. AFib is converted electrically.

I have had many chemical cardioversions for AFlutter and sinus tachycardia of which all were successful.

The doc gave me Flecainide with the last cardioversion and I have not had any long episodes of AFlutter. Ten minutes at the most and far less frequently.

My new cardiologist and EP find it strange that the Flecainide works with AFlutter as it is designed for AFib.