Anyone have 100% success with Ablation?

Hi Kristina,

I'd imagine that would be very difficult to help someone long distance. I hope she gets some answers quickly. How long has it been since her surgery?

She had surgery August 10th,2016. The doctor called and they want her back on Metoprol. The monitor showed 4 separate occasions of 190 BPM. Her appt is Oct 10 which is the 2 month anniversary of the ablation.

Well that's good that they were able to catch it. I am allergic to the electrode stickers to, my skin is broken out and bleeding slightly but I just keep switching areas. I never tried metoprolol, just verapamil. I hope she gets feeling better.

Hi Kristina!

I was wondering how your daughter is doing? I'm 23 and was diagnosed with svt back in October and I'm currently debating getting the ablation. I tried beta blockers but they don't really help and make me feel terrible (tired weak etc). I'm just worried the procedure might make things worse.

Hi Savanna.

Mental and emotional stress were definitely a trigger for me. I don't remember ever having an SVT episode while I was already stressed, but normally a day later when whatever had caused the stress had calmed down.

Have you been put on new medication since your SVT diagnosis?

Hi Savanna and thanks for sharing. You had mentioned that you were diagnosed with SVT, was there a time that you had an episode that they were able to catch it to make that diagnosis? I am sure your cardiologist will suggest medication or ablation. If it is impacting your life a lot and you don't deal with the episodes well, I would definitely go with the ablation. The ablation surgery is not nearly as big of a deal as I made it out to be in my head. I would do it a few times more if I had to. Have you had a 48 hour monitor or 30 day event monitor hooked up?

The 48 hour monitor I had only showed a few skipped beats but nothing dangerous. My cardio said I went from having 100,000 pvc's a day prior to the surgery to 300 pvcs after the surgery so regardless of my condition now, the surgery helped me a lot. Right now I have 30 day monitor on and they have me scheduled for an echocardiogram and a chemical stress test on Friday. They basically want to completely rule out my heart of any underlying issues or reactivated arrhythmia. They put me back on celexa to calm the vasovagal nerve which has helped a lot with the syncope but unfortunately the palpitations and chest pains are worse. My nervous system is completely failing so the ER says I might get referred to Mayo Clinic which would be lovely because there are no specialist where I live that can treat dysautonomia. So far doctors are guessing that there is an underlying disorder causing me to have palpitations such as pots syndrome but that it is also coexisting with another disease. Unfortunately it's going to take a referral to a speciality hospital to find out. It might be another month before they get there paperwork in order. I really hope and pray they get me referred.

Best of luck to both of us!

I did have an episode caught on the monitor while I was in the ER. My hr was 180 on the ekg. I also have some other symptoms that are making me wonder if I might have pots as well. I've always had fairly low bp but it has never really caused any issues until recently. The doctor put me on metoprolol and it made me feel so much worse. I've since stopped taking it and I've just never felt the same. My heart races upon standing and I feel really dizzy which was never a problem I had before.

It really sounds like you've been through a lot and I really hope you get answers.

The ER doctor prescribed me metoprolol which I took for a few days. No svt episodes but I did notice it bright my hr way down. I already have pretty low bp and I feel like the meds could have brought it down even lower. I have since stopped taking it and I haven't felt

Normal or the same since.

I know the day before my first episode I had a lot of stress. I had bought a new car and had a huge argument with my husband. Got very little/poor sleep that night as well. Woke up the next morning with several palpitations, racing hr, and I was convinced I was just going to die right then and there. Unfortunately by the time I had made it to the hospital everything had subsided. It wasn't until a week later when my episode was caught on an ekg.

Hopefully it will be the Mayo Clinic Danielle, they are meant to be

the best.

I know its very difficult, but hang in there until you get the 

answers and treatment you need

The number one symptom of pots is dizzy upon standing and increased heart rate. If you feel better laying down flat then I would say pots syndrome would be something worth looking into.

I also have pretty bad anxiety but always felt that I managed it well. I truly believe that SVT comes on when it wants to and can be followed by anxiety or panic attacks. And your definitely not alone, everytime I have an episode I feel like I'm going to die but I think it's just a part of SVT and dying is highly unlikely.

They did teach me a little trick at the hospital to try to stop an episode, they said to bear down like your taking a number 2, you can do this while laying down or in any position really. They also said that putting ice cubes under your armpits and between your thighs and then bearing down might work to. So far it's helped me with several episodes so it's useful.

I hope your able to find a pots specialist in your area, if that is what you have, the proper treatment and medication is very important because some meds can make it worse, especially if you have low BP. Do you have a blood pressure monitor?

Thanks, I have heard very good things about mayo. I think it's the best thing for me and it would be such a relief to be in a hospital and get all the proper testing and treatment all while being monitored. I am hoping and praying anyway. I hate when doctors prescribe new medications and send you home not knowing how they will impact you. Mayo works with you until they find a plan that works.

Some folk can tolerate betablockers better than others Savanna. 

I was on a few different SVT meds over the years. 

They worked quite well initially, but eventually I found that those best at 

preventing SVT were also the ones that made me feel most ill every day.

I eventually decided (after discussing it with my cardio) that I’d rather 

have the odd episode of SVT than  spend the whole time feeling so 

unwell (e.g. nervy and/or lethargic). So I stopped taking the beta blockers.

The ‘odd episode’ of SVT became about half a dozen nasty episodes

a day (partly because of other conditions I picked up along the way) so I

had no choice but to have an ablation. That was over four years ago and

I haven’t had even one SVT episode since and don’t take any heart

meds now.

It can often take quite a while for the specialists to work out the right 

dosage (and maybe mixture) of meds so do bear with it. It might be no

harm to keep a ‘Patient Diary’ listing what meds you have taken each day 

and rating how you feel mentally and physically out of ten. As well, of 

course, as any SVT episodes and how long they last, trips to A&E etc. 

This could give the cardio and your GP some useful feedback.

Hi Jessica!

I am currently debating getting the ablation procedure for my svt and what you are mentioning is why I am pretty hesitant. I am only 23 and my symptoms only happen during excercise or quick movements. Recently though I have noticed by heart rate increasing a lot just from standing. My rest hr will be 65 then I will stand and it has gotten to 115 or 120. I'm worried that if I have pots as well as svt I may be worse off after my procedure if I get the ablation? When were you experiencing your svt symtoms prior to the ablation?

Hi Jessica,

?I haven't been on here for sometime but just an update and hopefully some guidance. I too was googling for answers when all my symptoms started after the ablation. I joined a POTS group on facebook and it has been extremely helpful and supportive. It's full of people who understand what your going through. I was very surprised by the number of people I met in the group who got onset pots or vasovagal syncope after an ablation. Dozens of them infact and growing. I have learned so much about POTS/Dysautonomia in the past several months. And it seems to be a common pattern that anybody with POTS has had major trauma to their nervous system. People get POTS after fighting a virus, mono, lyme disease, they get it after having surgery and some people it's genetic. There still is no cure for POTS but there are medications that can help you along the way.

?My doctor put me on Celexa 20 mg and prescription Pepcid about 8 months ago, it literally was a blessing as I went from being completely bedridden to being 95% fully functional. I am lucky as my POTS is more mild but only with the SSRI. If I were to stop taking the Celexa, the syncope and other symptoms will return. I do not currently require a beta blocker like many pots patients. They offered me one as my heart does still get tachy sometimes but I have learned to deal with it quite well. It doesn't scare me as much as it use to.  

?POTS is full of so many bizarre symptoms, a lot of mine have calmed down but I still have blood pooling in the legs, I have a heat intolerance so I can't sit out in the sun very long, I can't take hot baths or hot showers and I can't even wash the dishes with hot water or else I get super tachy and dizzy, I also have a major exercise intolerance. I'm fatigued all the time and get migraines and vision disturbances, tinnitus, electric bolts that shoot up the back of my head. I also experiencing a lot of chest pain, brain fog and bloated stomach issues. The list goes on but the more you educate yourself about it, the better you get. I've only had POTS for 8-9 months now so I still hope that it will go away within the next 2 years. Some people get lucky and it just disappears but some people have it forever as a chronic illness. It's an awful disease to have but it won't kill you. The worst thing about POTS asisde from the crazy symptoms is that you suffer emotionally, it takes a huge toll on your quality of life and your sanity.

?I hope you get the right diagnosis and treatment for yours. They can do certain tests to diagnose you, tilt table test and such. Please feel free to add me on facebook to talk more and I can add you to the POTS group.

?

Emis Moderator comment: I have removed the FB link as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

Hi Amy!

Yes my SVT has been there since my early 20'S (I'm 29 now) but my episodes were short and about 2 years apart. My last SVT was in January and that was when everything changed, my body never fully recovered and that's when all of this POTS madness started. I decided to have my ablation done in March because I thought all my symptoms were stemming from my heart. Boy was I wrong. After my ablation it threw my POTS symptoms threw the roof and that's when I started clueing in that this wasn't my heart, something else was going on. It's hard to give you advice on what to do because with the SVT attacks you are having, they alone could be making your POTS worse. However, if you get the ablation done you will likely have a huge flare of symptoms of POTS but at least the SVT will be cured. I will say go for it, who knows, your SVT could be your underlying cause? I am so glad I got my ablation over with because that last SVT episode is what started my POTS so who knows what my body would do if I kept having them. I'm so glad my SVT is gone!! Now I'm just trying to get rid of the pots or at least get to a point where I feel safe in my own body.

Best of luck!

Keep in touch and let me know what you decide!

So do they think the SVT and ablation is what cause your POTS then? Thank you SO much for your reply! It nice to finally find someone who has a similar situation as to mine! I am having my TTT next week and I am TERRIFIED! But hoping to have some closure on all of this. Unfortunately I don't have Facebook (too much drama haha) but sometimes I use my grandmas LOL maybe I will add you from hers so I can be apart of that group! I would love to be connected to more people with this! I feel so alone and lost and I think everyone around me is starting to get sick of me and brush me off as if it's anxiety. However, I do have anxiety with this and i am in fear the majority of my day.. just because I don't know my body anymore! It's a horrible feeling! Maybe I will look into the Celexa.. in need a anti anxiety that doesn't make me sleepy since I have two toddlers. I tried Zoloft and hated it.

Anyhoo thank you for getting in touch and I will try and find you on Facebook (as my gma)

Hi Jessica!

Do you think your symptoms might be just the healing process of the ablation? I heard from some people it took a few months after the procedure to feel back to normal

My cardiologist doesn't think so, I thinks my tachycardia is secondary now and that something else is going on. My HR will be 70 when I'm sitting and then go right up to 120-130 as soon as I stand up. Mornings are worse for me. As soon as I get the beta blocker in me and as the day goes on I feel better and my heart mellows out. I am worried about the stress this is causing my heart since it is still healing from the ablation. They say you have a healing period of 12 weeks until the heart forms the scar tissue over the burn spots. Anyhoo I guess I will know for sure after my tilt table test next Friday! Eeeek! :S

good luck! I mentioned pots to my doctor because of recent symptoms similar to what you mentioned (my hr increases by 30-40 beats sometimes when standing) and he kind of just brushed it off so I am going to go to another doctor for a second opinion 

Hi Jessica!

What were the results of your TTT? I just had mine done a week ago and turns out I have a mild form of pots (no blood pressure change or syncope) but just wondering what your doctors said and how you are continuing treatment