Electrophysiology Appointments On The Horizon?

[SarahA33]

Hi everyone,

I had a really difficult day yesterday. I was resting at my normal ridiculous HR btw 120-130 when I immediately spiked to 200. but I feel a clicking in my heart. It's almost like it wants to beat but pauses and then adds a double beat to catch up. It's not a flutter like I can get sometimes. I littraly can feel it pause... Scary as I was just sitting surfing on my ipod doing nothing to induce it.

I called my doctor and went in. The BP was actually not terrible, but my HR was around. EKG's and echo's were done and sure enough, I slipped into Supraventricular Tachycardia, nonspecific abnormality, left ventricular hypertrophy (which has been seen before in ekgs and echo's but has now appeared to have gotten worse)

As I've mentioned, I've seen n a TON of doctors, including to EP's who both told me 4 years ago I'd need a pacemaker. I of course opted for pharmaceutical treatments which have helped a little but not much. Clearly I cannot manage with heart rates and bp's this high for more longer.. I have a constant fear that my heart is just going to give out. I am running out of options and causing such harm to my body. I am 27 but feel like I'm 87.

I have an apt w/ cardiology this am and will have the holter once again. I've been up all night crying because I just can't understand with everywhere I've gone,all the meds, all the doctors Ive seen, that I've wound up at this point. It's a pretty crazy circle I guess.

Any suggestions would be appreciated. Thanks in advance

Sarah

[corina]

I'm so sorry Sarah! No words of wisdom as I don't know a lot about pacemakers in dysautonomia, just sending you strength and well wishes. I'm sorry you have to deal with all this at such a young age.

[MomtoGiuliana]

I am also sorry you are dealing with so much Sarah. I have two friends w pacemakers. One in her 30's and one in her early 20's. In both cases, the pacemakers really changed the course of their conditions and greatly improved quality of life for them. Like you they went through a long period of trying various medications first.

the one thing I am confused about (and sorry I don't know enough about this) -- in their cases, the pacemaker is speeding up their heartrate (one has heartblock the other has NCS and her hr does not speed up enough to counteract low bp at times--from what I understand). I didn't know a pacemaker could slow down heartrate? Or perhaps this is a pacemaker that would ensure your heart maintains normal sinus rhythm?

I hope that it helps improve your quality of life the way it has for these friends of mine, if this is the route you end up on. I just want you to know you are not alone!

[SarahA33]

Hi Corina and Katherine,

Thanks so much for the support and kind words. I got fitted for the holter today so I'll have some answers when I get to the Electrophysiology lab.

From my understanding, and I haven't done much research regarding it over the last few years because I've filed it away in that "Never happening" compartment in my brain, but this is from the university I'll be going to be on Tuesday.

https://www.urmc.rochester.edu/cardiology/patient-care/conditions/arrhythmia.aspx

Pacemaker was wrong choice of wording, I misunderstood as a pacemaker type procedure. Katherine your correct that an actual pacemaker is for bradycardia. I'm going to consult for a procedure called Ventricular Cardiac Ablation or a reschynrinazation device.

As scary as this all is, something has be to done because I've steadily caused damage to the left ventricle and enlargement. The cardiologist I saw this morning was completely uncomfortable with arrymitha correcting medications. His suggestion was to wait it out until Tuesday or get admitted into the ER which would get me no where. The hospital is about an hour away and they are the best when it comes to EP so I decided to wait.

[AllAboutPeace]

Sarah,

(((Hugs))) I'm so sorry to hear that you are going through all of this

Your day yesterday must have been both very terrifying and very exhausting. Irregular rhythms are the worst, especially when they hit you out of nowhere.

I'm glad you have an EP that you are happy with for your appt on Tues. and I hope that you both will come up with a plan that will give you peace of mind.

[Psalm 23]

Hi Sarah,

I'm so very sorry you are having to go through such serious scary cardiac issues and at such a young age. It seems so unfair. After trying the pharmaceutical management route for so long and not benefiting sufficiently it doesn't sound like you have too much choice left but to consider other treatment options. I'm so glad you saw a Cardiologist this morning and had a halter monitor placed.That should provide some very useful information. Dr Huang the Cardiologist you are seeing on Tuesday sounds very accomplished. That's great that you don't have to wait too long to see him. I will look forward to hearing about the outcome of that visit. I'm going to read up on the proposed procedures. We'll talk soon.

Janet

[Chaos]

<<<<<<Sarah!!!>>>>>>>

So very sorry to hear you are having such struggles. I know ablations are generally not recommended for POTS patients, but clearly you are having serious consequences to your heart with what's going on at this point and meds aren't doing the trick. Hopefully this Dr. Huang will be able to give you some answers and reassurance when you see him on Tuesday. Sometimes when you get to the point that you don't have other options it's a lot easier to decide what to do. Here's hoping he will know just the right thing that will help you and get you the best results possible.

Sending you lots of supporting hugs and thoughts and prayers.

[SarahA33]

Hi All,

I can't even begin to thank you enough for the kindness you've showed me. It's a strange thing.. close friends and family know about the situation but they don't know what to say to me. It amazes me that reading these comments hits home and provides me with a sense of peace that those closest to me just aren't able to provide. (not to their fault at all!) Thank you for that. It's strange how normal my tachycardia has become and how I've adapted to dealing with it, but this flip-flopping in my chest and feeling like someone is turning a light switch on and off is a whole different ball game. All about peace, your right - it did hit me out of no where this time.. usually when my adrenaline will get to pumping I'll feel something similar but only temporarily and not to the gravity it was Thursday.

Janet, thanks for offering to look into this further for me. it's nice to have a smart cookie like you on my side

Chaos... I'm trying my best to stay positive, so thank you to you for the cyber hugs and support. Here's to hoping he's got the right answer also. As always to all of you, any and all of your feedback is so very much appreciated.

Sarah

[Chaos]

CC does have the reputation of being the top heart hospital in the country so it seems like it might be worth while getting an opinion there. It's not like it's "just another opinion" at joe's hospital down the street. However, the other consideration will be how long it will take to get that opinion and how urgently you and your current docs feel you need treatment.

I think you are a smart woman who has a good feel for your own body. I suspect once you talk to this doc on Tues. you will have a good sense for whether your gut feeling is that you are comfortable with his recommendations or you think you need more input in order to make a decision. Sounds like you already have some history with him so that may help in some ways to build your trust in him.

[Psalm 23]

Hi Sarah,

I hope you're feeling better today. In response to your question, if there is not an urgency I would seek an additional opinion especially since you are venturing into therapies beyond pharmaceutical. CC sounds like one of the best places to get a second opinion. Of course the outcome of your apt on Tuesday will give you a much better idea of what feels right to you. Chaos is right in that ablations are not generally recommended for POTS patients so extremely careful consideration should be given if anything like that were proposed. I did find some informative articles about the bi-ventricular pacemaker/cardiac resynchronization therapy. I found it interesting that the old type pacemaker addressed bradycardia/arrhythmia issues primarily but the bi-ventricular pacemaker addresses issues beyond that.

http://my.clevelandclinic.org/heart/services/procedures/biventricular_pm.aspx

You are very smart and informed and have a lot of experience from which to draw in making a decision you feel comfortable with. You also have a great deal of strength within. Hang in there.

Janet

[SarahA33]

Janet & Chaos,

this was taken from the link you posted, "candidates for a device that includes biventricular stimulation (CRT/ICD combination device) The CRT/ICD combination devices: Resynchronize the heartbeat & Slow down an abnormal fast heart rhythm"

Sounds just like me. I printed this out and am hoping dr. huang on Tuesday will be able to explain it further and if they specialize in it or not.

The great thing about the Cleveland clinic is that they offer a Same Day Appointment Service. Unfortunately, you aren't able to choose the physician you'd like to see. However, Chaos, like you mentioned, timing may be somewhat important so this may be a good option for me after I am at strong on Tuesday. We will see.

One day at a time and I'm really trying my best to not let my imagination/fear run too rapid. I'm trying my best to follow my doctors instructions until the appointment. I'm on a stronger dosage of Ativan this weekend and cant do anything to induce a higher hr and to keep my stress levels down because if my HR ends up exceeding 180 I have to go into the ER. That was our deal..

Thank you guys for your advice and help, I hope everyone is having a nice long weekend.

[KareBear]

Cant wait to hear how your upcoming appt goes! Rest, rest, and relax til then I will be keeping my fingers crossed for you. Good luck!

[SarahA33]

Hey Kara,

Thanks for the reminder to take it easy

Sarah

[Bambamjr2013]

So sorry your going thru this. God bless ya and keep your head up.

[SarahA33]

Hi bambam,

thanks for the support!!

Is that your yorkie on the pic? I have two and a great Dane :-)

[Chaos]

Good luck tomorrow Sarah! Will be thinking of you. Please let us know what you find out.

Hugs!

[AllAboutPeace]

Just thinking about you Sarah and hoping you're doing ok!

[Chaos]

Me too! Have been thinking of you a lot and hoping we'd hear from you. Praying everything is going ok.

[SarahA33]

Hi guys,

I wanted to update sooner but quite honestly haven't been able to move without my heart just totally going haywire. I've spent majority of the week crying (which isn't helping anything), in and out of the DR & ER, and running (haha) through a battery of tests I've had done 100 times.

I'm sorry for not responding sooner. I typically don't have "low peaks", but to be honest, I'm scared and just incredibly sad that something ELSE is happening on top of the hyperpots. (I took the risk of complaining there.. i'm done, sorry) Don't you all wish we had a DINET phone so we could check in?

They've got me on a holter again and have brought back my former cardiologist to keep a close eye on things until I get back to that EP this coming Tuesday. I'm feeling worse by the day...still can't sleep and mind racing, but too weak to stand now.

Thank You for the well wishes everyone. This may sound silly but I carry your thoughts with me as I'm driving to the appointments or in the waiting rooms. Every time I find myself thinking, "here we go again..." somehow it brings me full circle back to what you guys have all gone through too.

I Hope everyone is doing okay...

Sarah

[SarahA33]

Chaos this is random, but i'm going to hijack my own thread for a quick sec,

do you have any brainfog and if you do, do you feel like the Topamax could be contributing to it?

[KareBear]

Sarah, this sounds absolutely horrible. You certainly did not need this, I imagine it made your heart and BP even worse. I sure hope the complaint you filed is taken seriously and they take action. You have every right to complain, I would have complained more! I'm sending big (((hugs))) your way.

[SarahA33]

Kara,

then my overanalyzing fault kicks in and I start thinking... but then what, new meds? devices? ablations? Procedures?

It's EXHAUSTING! ..one day at a time...I guess we all just do the best that we can at that moment, right?

[Chaos]

SO SO sorry to hear that this was the result of your appt. SO not what you needed, especially at this point in time.

I am really glad to hear that you went straight to the supervisor to report the bad behavior though. Good for you! Thanks for helping all of us out by making these unprofessional people accountable for their actions. Until more people do that the situation is never going to change. Not that I think patients should be nasty or aggressive toward providers. BUT, if the providers treat the patients badly, then I definitely think it needs to be challenged and they need to be called on it. Sorry...going off on my own rant here.

Sarah- I have had significant brain fog in the past before and after being on topomax. I think much of it has been improved since being on anti-virals. When I started the topomax I titrated up really slowly. Got up to the dose the doc wanted but felt like it was too much in the morning so backed off a bit on that dose (with his approval) and have been fine with it.

[Psalm 23]

Hi Sarah,

What an outrageous experience to have to go through. You go in search of help and all you get is unprofessionalism and cruelness. What is the matter with what are supposed to be health care professionals these days. I'm so very sorry for all that you are going through. I hope next Tuesdays appointment with the EP proves extremely helpful. Keep hanging in there.

Janet

[Ctat333]

I was diagnosed with SVT years ago, after having my first episode at 18 years old, and had runs which landed me in the ER several times. My highest recorded heart rate was 298 bpm. The nurse actually turned off the machine to restart it b/c she didn't believe the numbers lol. SVT episodes are terrifying; I thought I was going to die each time I had one. It literally felt like my heart was about to give out.

I had a cardiac ablation 2 years ago, August of 2011. Although my POTS symptoms have increased since the ablation, I have only had 2 SVT episodes since the ablation, and I used to have them daily. I do not regret my decision to have the ablation. It has changed my life incredibly to not have the SVT episodes that I did. POTS *****, no doubt about that, but for me, the SVT was worse.

Sorry you are having to deal with this! I know first hand how scary and frustrating it can be.