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Not Coping... SVT

Posted , 10 users are following.

gillian95988
gillian95988

Hi, I have started a few discussions here over the past week or so re my svt and missed beats, palpitations returning...

when diagnosed in October 2015 I struggled really badly with it - Sleepig almost upright on my sofa for 4 months with the fear that if I slept lying down in bed it would bring on another attack...

I also Never And Still Dont leave my house without my heart monitor "Just In Case"

This time around it's so much worse...

Is anyone else terrified by this!?

I consider myself a strong person and I have coped with A lot of things throughout my life - But this has just made me feel very broken.

   

0 likes, 32 replies

32 Replies

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  • judy89357
    judy89357 gillian95988

    Posted

    Gillian, I have had SVT for 20 years and yes the episodes are very terrible. I have gone as long as 3 years without an episode but have recently started having them more frequently. I am considering an ablation. Have you considered that?
    • gillian95988
      gillian95988 judy89357

      Posted

      My cardiologist isnow considering an EP study,

      She seems to think ablation is not always the answer as they need to find the exact spot and able to trigger an episode for ot to work!

      How have you coped for all these years with them?

      And how high and for how long do your episodes last for?

      Do yours convert back on their own or do you have to go to hospital?

  • crissy10179
    crissy10179 gillian95988

    Posted

    Hi Gillian I'm the same although I've know I've had svt since I was 21 I had only heart palpitations and major anxiety for 12 years of it with no svt attacks until 6 months ago after having a reaction to medication now I'm back to petrified because I was having svt attacks every day to every second day they have eased up over time but the anxiety of having another attack is just as bad

    • toffeecushion
      toffeecushion crissy10179

      Posted

      You are right, the anxiety is just as bad.  And if we were getting them every day at least we could go to see our doctor.  How can you go to your doctor and say you are are scared just in case you have a SVT attack?
    • gillian95988
      gillian95988 crissy10179

      Posted

      Crissy, the anxiety is awful! And rhe thought of another one is making me feel so scared!!!
    • crissy10179
      crissy10179 gillian95988

      Posted

      I'm totally with you I'm the same I'm really trying to reclaim my life but the fear is so overwhelming I wish you luck I really do I'll keep you posted if I get any new information on how to live with svt

  • paullie
    paullie gillian95988

    Edited

    Having SVT can definitely be very stressful : (.....I chose not to have an ablation, but was told I should when the SVT starts inteferring with my life...we will always be so tuned in to our heartbeats, and hopefully the times when our beats are just fine, outweigh the times when they are not...see your dr regularly for peace of mind that your heart is ok...hang in there, hope this helps a little.
    • gillian95988
      gillian95988 paullie

      Edited

      Thanks Paullie, The thing is everytime I see the doctor I come away feeling quite positve... Then I start doubting them,thinking they have maybe missed something!!!
  • toffeecushion
    toffeecushion gillian95988

    Posted

    Morning Gillian,

    I know exactly how you feel.  At the moment, after my episode last week, I am afraid to leave the house alone.  I get my shopping delivered and if I have to get the odd thing I leave early in the morning when my husband leaves for work, he leaves me at the supermarket, that way I only have to do half the journey on my own.  It's controlling my life.  I also have a heart monitor with me at all times, mine is my fitbit and it doesn't leave my wrist while I am out.  I also have an oximeter by the sofa and check my pulse regulary.  I am sure as the time passes without an episode it will get easier but for now I am so scared of it happening again.  I've also been getting a bit of discomfort in my chest too this weekend, more of a muscle ache really, but typically it's my left side. 

    I can't really offer any advice to make you feel better but can tell you you are definately not alone feeling like you do.

    I am trying to lose a bit of weight, it helps me to feel like I am getting some control over this, but I guess thinner people suffer too.

    Stay strong, we are all in this together.

    • gillian95988
      gillian95988 toffeecushion

      Posted

      Morning toffeecushion,

      I Just can't get over how debiitating these svts are...

      I meanI just don't see myself moving on from this , it consumes me 24/7 right now!

      I have also had an ache over the past couple of days, right side, mainly in the back area, now i'm googling PE - Thinking i might have through of a clot from my last svt episode..."ANXIETY"!!!!!

      Was thinking of going back to work tomorrow, but that's not going to happen.

      Let's just take it,

      "One Day At A Time"

    • toffeecushion
      toffeecushion gillian95988

      Posted

      Morning Gillian.

      Are you feeling any better, did you manage to work yesterday?

      I'm still feeling quite anxious over this waiting for it to happen again.  It should get easier as time passes without an attack but it gets harder because the longer you go without an attack the nearer the next one is - does that make sense?

    • gillian95988
      gillian95988 toffeecushion

      Posted

      Morning toffeecushion,

      No I never went back to work (loaded with the cold and really bad cough),Probably the pain in my back! Although I would have work if iw wasn't for the svt! I have got an appointment with my GP today for a sick line...

      Yes it does make sense re the next episode.

      I had about 6 in 6 weeks last year and never came back until last week, Although I still have major anxiety over them...

      To be honest I would like to try the ablation - But my cardiologist doesn't  seem that keen on them!

  • XxaimxX
    XxaimxX gillian95988

    Posted

    Hi Gillian, I hope this will help you.

    I have major anxiety it flares up every few years and it did just after my daughter was born in Feb 2015, I knew there was a heart problem it just didn't feel like panic, anyway finally in September 2016 my heart set off racing and it wouldn't stop, I called an ambulance and they took me to hospital with a heart rate of 240bpm and I was in that for an hour before having the adenosine injection which successfully stopped it racing. Finding out what it was exactly helped but the fear of having another attack was just awful!! The heart specialist reccomended an ablation because he could see I was terrified and pleading with them not to let me die.

    In the meantime I have been put on beta blockers which wasn't nice at first because they make you tired but now I've gotten used to them I wouldn't stop taking them. I saw one of the best heart surgeons in Sheffield a few weeks ago and an ablation and he said these exact words "you will not die, it will not shorten your life expectancy and you will not have have a cardiac arrest, this is a massive inconvenience that is all and it can be managed".

    So I'll be having the ablation in the next couple of months hopefully but in the meantime I'm on my beta blockers and it's now been 5 months without a prolonged attack. I have just come out of a 5 year relationship and I can't remember the last time I felt this amazing given the circumstances. I'm even going out at the weekend! That is not like me!

    Keep telling yourself, you will not die and anywhere you go an ambulance can get to you should you need it. And you don't even have to call one if you are nearby a hospital you can go yourself just get someone to take you. Don't worry I know it's hard but I know for a fact if I carried on worrying I would have had a lot of episodes since the last one but I haven't. If it happens I will deal with it and that's what you should do. If it's ruining. Your life go and talk to a specialist about an ablation I can tell you know you won't regret it! I wish you all the luck in the world on working through this, please message me anytime x

    • toffeecushion
      toffeecushion XxaimxX

      Posted

      Can I ask you what the adenosine was like.  I fear that so much.  Thanks
    • XxaimxX
      XxaimxX toffeecushion

      Posted

      It's like your whole body just drops suddenly, I remember shouting oh my god because everything just slowed down, it wasn't nice but I would have it a thousand times over to stop SVT. My heart rate just sunddenly dropped from 240-100 so I'm sure you can imagine the feeling of the rush just stopping. I had to take some deep breaths and within seconds I was back to normal asking for my daughter and thanking the whole team. Don't fear it it's literally seconds and that's it nomality returns x

    • gillian95988
      gillian95988 XxaimxX

      Posted

      Thank-You XxaimxX,

      Yes I have aslo suffered from anxiety fo many years also. On hidsight I also always new ther was something not quite right with my heart but it was always put down to anxiety. Like you after my first daughter (21) now) was born there was one day i just didn't feel right, really anxious and my heart just felt a bit off. Suffered it all day, went to the hospital that night and the told me I was suffering from a panic attack.

      I now believe that was poosibly my first svt...

      At my appointment last week my cardiologist has said she is going to look into me having an ep study, so hopefully if they can locate the area causing the problem then an ablation would be an option.

      I just feel very overwhelmed by it all right now...

      And the same question as toffeecushion - I also fear the adenosine!

    • gillian95988
      gillian95988 toffeecushion

      Posted

      Nope i've never had adensonine...

      It Soo Scares me though!!!

      I think XxaimxX has expalined it really well, an I suppose lots of people have had it and you know it won't be nice, but nrither is an svt episodesad

    • Pasty_man
      Pasty_man gillian95988

      Posted

      Hi Gillian

      I've had SVT, a lot of Adenosine and an ablation!

      I'm a 44 year old guy and I lived with SVT since I was first diagnosed at 28.

      My heart rate used to go up to 240 BPM for upto an hour. In 10 years I went to hospital 4 times and had Adenosine every time. It's as people explain on here, it effectively blocks the signal to your heart for a second, enough to allow your heart to reset. It's an odd feeling, but you feel great all at once when it kicks in and you're back to normal. You will end up tachicardic for a while, but that settles down.

      I work with Consultant Cardilogists in the private health sector and I have discussed this at length with them.

      So we know it won't kill you, but the fear of it starting I found to be worse than having it. Not wanting to lie down, bend down etc was getting to me. I would consider where I went on holiday, always making sure that there was a hospital near by - when it effects your life this badly you should get it fixed, but that's a big decision.

      I was getting SVT every week in the end, we also know that SVT episodes tend to get closer together the longer you have it. It's all to do with your heart getting used to the rouge pathway.

      My best advice is to learn to "valsalva" techniques that can stop it. They are very effective and when used to good effect, they will give you confidence. Internet search them or look on here you'll find them.

      I didn't want long term medication so I had the ablation Nov 14 and I've had no SVT at all since.

      Your Cardiologist/GP should support this for you. If not, get a private referral to see a Cardilogist at your local private hospital. They can refer you back to the NHS afterwards if needed - it's not expensive.

      I hope that helps a bit.

      Take control by learning the techniques, get good advice and take control of your life back.

      Best wishes

      Chris

    • gillian95988
      gillian95988 Pasty_man

      Posted

      Thanks Chris,

      I would now be happy to have the ablation as this is affecting every part of my life, I just feel I am missing out on so much... 

      I seen my cardiologist last week and she didn't seem that keen for ablation.

      I have gotan appointment with my GP on Wednesday so I will bring it up with her.

      I had been thinking og going private for a consultation, I know with the NHS they have time slots and I always come away feeling I wish I had aske more!.

      Would I have to request my medical records to be sent to the private hospital or would they have access to them online?

    • gillian95988
      gillian95988 Pasty_man

      Posted

      Hi Chris,

      I have my appointment with my GP tomorrow and i'm very keen for a second opinion re an ablation.

      As you work in this area could you tell me if having a private consultation (second opinion) would the be able to access my NHS results ECGs, Echos, Mri scans etc? As I would not be able to afford to have them done privately!    

       

    • Pasty_man
      Pasty_man gillian95988

      Posted

      Hi Gillian

      I worked in the NHS for a large part of my career and more recently the private sector and the way it generally works is that when you see your GP you can ask them for a private referral if you want a second opinion.

      Depending where you live, what normally happens is that your practice will send your last ECG's, chest X-rays, 24 hour event monitors etc along with your private referral. In some areas there is the electronic patient record which is easier, but don't worry about extra tests and the cost.

      I firmly believe in the NHS and don't access the private sector unless you really have to. Explain to your GP that you are looking for definative treatment and that you would value a second opinion. If they are reluctant you could see another GP or go for a private referral. As it's a first outpatient consultation it's less than £200 I would guess.

      There are many types of SVT, many are very treatable. What normally happens is that you have the EP study and if they are able to ablate, they do it at the same time. It saves having to go a 2nd time, they will consent you beforehand.

      I'm surprised your cardiologist isn't suggesting it as you sound like an ideal candidate. If it's effecting your life and they can fix it, they normally promote the ablation.

      Do some research as well on your Cardiologists. Ask them for success rates etc and look nationally. If you're staying NHS, you can elect to be treated anywhere - go where the best clinician is.

      I'd be more than happy to answer any other questions you might have along the way.

      Good luck and let us know how you get on.

      BW

      Chris

    • gillian95988
      gillian95988 Pasty_man

      Posted

      Thanks Chris, 

      I also believe firmly in the NHS and so grateful for this healthcare system...

      I have had a few hospital admissions over the years regarding my heart, a lot of the times they just said it was ectopic beats, and sinus tachycardia.

      In 2014 I had an echo which showed up some thickening of the heart wall muscle (suggesting cardiomyopathy) I then had an MRI and it came back within normal limits. Also had a stress test and holter moniter that picked up one 7 beat run of NSVT (Told nothing to worry about in a structrually normal heart) 

      In 2015 I woke up with a super fast heart rate.(Never experienced anything like it before, was surprisingly calm but dialled 999 as I knew something was not right.By the time I got to the hospital my HR had come down but I was admitted as I had a mildly raised troponin anf D- dimer. Had a CTCA and CTPA to rule out a blood clot or damage to the arteries. All came back clear although they couln't rule out plaque rupture and treated me for management for 6 months, clopidigrel, asprin and simvistatin.

      December 2015, same thing again, wolke up high HR, admitted to CCU for 4 days No troponin rise or D- dimer rise this time. was caught on moniter at a rate of 180 ? atrial tachycardia! Discharged on maximum dose of verapamil 240mgs sr and 2x120mgs.

      Febuary 2017, same thing happened again, woke from sleep high HR, went down to A&E but it was settling by the time I got there, about 150.

      After seeing my cardiologist (new one) my original one retired, I was just a bit disappointed that she never put me on the list for an EP study. 

      She did suggest saying to my Gp about a sleep study as it happend when i'n waking up!

      Still having (not enery morning) high HR and i'm having lots of palpitations.

      Sorry for the Long reply but it actually helps to write it down...

      No one has really said what type of svt it is...

      Just want rid of this so that I can get my life back   

         

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