Electrophysiology Appointments On The Horizon?

[SarahA33]

Jan & Chaos,

Thank you both for the support.

Ctatt,

Hi! I see your new...welcome!

I get that w/ BP/HR machine's all the time, "This one must be broken.." , then I say, 'Nope.. it's not broken." lol. Yesterday in the ER it was so touchy that I was around 220 but when I'd even move my arm around I'd set the alarm off because it'd jump up. Then I'd stand up to pee or something and then whoa! ..yeah i'm sure they were thrilled I was there. lol

I'm so sorry to hear your story. Did uou had svt before u were diagnosed with pots or vice versa? Have you always had tachycardia no matter your positioning? Its so much worse when I'm laying down because I feel the clicking that much more, when I'm standing I shoot right up. Where did you end up going for your ablation?

Thanks for letting me know a little about what you've gone through. it is scary. I'm not really an outwardly emotional person with my illness in my case but even my doctors yesterday commented that theyd never really seen me cry. I'm just scared.. I hate lack of control and this just adds to the already little I had left.

[BeforeTheMorning]

So sorry that you are having such a hard time right now. Having to deal with an awful nurse on top of being so ill is just too bad. I really hope that your next appointment is much better and that you will soon get the treatment you need and be feeling a lot better.

Thoughts are with you,

Lyla

[SarahA33]

Lyla... thank you for the feel better wishes. I need em'! I don't think I'm alone in saying or feeling like having this disease is overwhelming and completely consuming. I feel like one huge heart beat walking around.

[Ctat333]

Sarah,

Thank you for the welcome

I have not been officially diagnosed with POTS yet. I am currently without insurance, so I am waiting to get that situated before I can go to the doctor for a diagnosis. I have a heart rate monitor and blood pressure cuff that I use daily because of my SVT. I have had dysautonomia symptoms all my life, but the past 5 years or so they have really started increasing in amount and intensity. I found out about POTS after countless hours of researching online because I couldn't get anyone else to believe me or take me seriously. I found out about POTS, gave myself the poor mans ttt, and failed it miserably lol! My mom is a NP, so I had her repeat the test and I had the same results. I have been trying to self treat until I can be seen in February at The Heartbeat Clinic in Dallas for my official diagnosis.

Having said all that haha, I was actually diagnosed with SVT by my cardiologist about 6 years ago, when I was 23. So that diagnosis came first, but I believe I have had had POTS longer than SVT. Looking back, I think many of my triggers that started an episode were POTS releated. I never noticed the tachycardia until my first episode when I was 18. I did not have tachycardia all the time, just during an episode. My normal resting hr is around 60-65. Something would trigger me (could be changing positions, bending down, raising my arms above my head, alcohol) and I would get the sensation of a double heartbeat, and then a very long "pause". Then my heart would take off like a race horse, and go from 65 bpm or so to over 250. I would instantly not be able to breathe, start sweating, turn pale, get dizzy and exhausted, and get very confused. These are what I call "episodes." They stopped me in my tracks. An episode could last 15 minute or up to 2 hours. They started out very infrequently, but as I got older, and both times I was pregnant, they increased. I have only had 2 episodes in the last 2 years since my ablation. Dr. Naseem, my EP, did my ablation at Denton Regional in Texas.

I hope you get some answers and some relief soon. I know it's so hard. I completely understand the lack of control aspect. Just take it day by day, and be good to yourself. That's all any of us can do, I suppose Wishing you many good days in your future!

~ Alison

[gjensen]

Sarah - I am new here, but I wanted you to know that I am rooting for you.

I wish that I could have been there to deal with that woman myself.

[gjensen]

Sarah - I am new here, but I wanted you to know that I am rooting for you.

I wish that I could have been there to deal with that woman myself.

[SarahA33]

Hi there, GJenson,

Thanks for rooting from afar! Since you are a new member on here then you or someone you care about struggles also, so positive energy sent out your way!

Alison,

Wow, you've been through a lot to say the least. I seriously cannot handle a 70-100 pt spike in my hr, let alone a 200+. So for most of the time before the svt's it seemed as though you weren't running too high but then would get those episodes. I almost fell out of my chair when I read about your episodes.. they are eerily similar to what I've gone through. A huge spike in hr, (but mine also includes BP), vomiting, dizziness, blotches and reddish/purple skin color. The SVT just kicked in but I've had a really hard time controlling my heart rate even with mass doses of multiple medications. Resting it's about 115-130 now but climbs.

Can you help me describe this feeling I get in my chest, because the only thing I can seem to find is that it feels like it stops, then clicks, then flies..

[SarahA33]

Hi guys,

Just wanted to update.. My appointment went well. Until he came into the room I actually forgot how much I'd liked him the first time I met him years back. He was extremely honest and basically told me an ablation would probably be the best route before any type of device is inserted. Regarding the worsening of the pots symptoms post-ablation he explained that clearly my options weren't vast and that the benefits may outweigh the risks but he's going to reach out to 2 pots specialists that he knows to consider their opinions. The chance of medications suddenly controlling my heart rate without an ablation are basically none existent, but he recommended verapamil in hopes of helping the svt.

Also, he sees on the echo and heard mitral valve prolapse. A new addition as I've never actually heard of this before. He recommended a cardiologist to see there as it falls out of the EP specializations and is a structural issue of the heart. I'm going to follow up with my cardiologist here and he'll complete the testing also. Anyone familiar?

So..he ordered a chest X-Ray, a 24 BP monitor, a ton of blood work, a nuclear stress test, and an angiogram (the angiogram is going to be the hardest part of this for me). I have 4 weeks to complete the testing and then I follow back up with him to see how the Verapamil worked and to review everything as a whole. More questions than answers but I'm getting there. Thanks for the support everyone!

[gjensen]

I just do not know Sarah, but i am thinking of you. You have someone rooting for you in SC.

[KareBear]

Sarah, girl you sure have a lot to deal with right now. It must be a bit overwhelming! It sounds like the EP is doing enough background checking to make sure the ablation is right for you and he sounds like a great doc. Will be thinking about you, keep us posted! (((Hugs)))

[SarahA33]

Hey,

Thanks guys. I'm waiting for my life to get back to being boring again. Fingers crossed

[gjensen]

I hope that your life gets to be a bit more boring than it has been.

[BeforeTheMorning]

Glad your appointment went well, it sounds like you have a good doctor.

Still thinking of you as you have so much to go through, and hoping you'll be back to boring very soon!

Lyla

[SarahA33]

gjenson,

So many members on here have been blessed with chidlren, but it must be hard to go through this with young children especially. We all just do the very best we can though.. You deserve some type of the father of you year award. I've wanted children as long as far back as I can remember but it just doesnt look like its possible at this point. Another thread, another time!

Anyway, from what I've read in the posts your family is so fortunate to have you. How old are your kids? You probably mentioened but of course, I can't remember.

As for my life returning to boring.. what i mean by boring is, no new symptoms creeping up on me, staying out of the ER for fluids atleast a month, and letting things just "settle" for a while. Breaking my routine is quite difficult and not being able to plan the next step is almost totrture. I like making plans plans. Which is just another reminder that I need a new plan.

Sarah

[SarahA33]

Kara and before the morning,

Hi Lyla, Thanks for checkin in.

How are you feeling Kara?

Sarah

[gjensen]

Sarah, do not count anything out yet. Who could know what the future holds? I cannot see past my forehead. How could I know what is around the corner? There is always something to look forward to.

I have five children. Two are grown. Three at home. Four grandchildren. Timothy, 28. Kristi, 24. Each has two children. One of each of those is adopted. Timothy and Kristi are not mine biologicly, but they call, me dad. Their kids make me feel old when they call me pa pa or grandpa, but they tickle me.

I have three boys at home. Jason 16, Matthew 13, and George 12. The middle son at home is adopted. Ironicly, maybe the most loyal one out of the bunch.

They are all great. Different. Individuals. None are really mine. I did not earn them or pick them out as they would be. They have just kept coming. If I can get better, I would like to adopt another. We will see. I am a grandfather now to.

That is what I want for you to Sarah. Peace. You keep plugging at it like you are. From what I can tell, you will. Who knows what they could bring you?

[SarahA33]

jgenson,

It's amazing that the first sentence you wrote to me is actually a lyric from my favorite song Idiot Wind. "I haven't known peace and quiet for so long I can't remember what its like." I'm a big goal setter, I'd like for you to know that was one of the nicest messages that anyone's ever sent me. I long for peace, also.

I'm still pretty young (Although not for much longer..) and my fiance and I have only begun to skim the options we have. I'm incredibly lucky that he makes it very known to my doctors that he could never lose me, so we'll have to come up with other ideas that won't jeopardize my heath. Sorry i got off on a bit if a tangent here

[JenniferInOhio]

Sarah, I'm so sorry to hear of your troubles. I only have short bursts of SVT - I can't imagine them going on for longer! I also have episodes of nonsustained v- tach. Because my svt is so short-lived and the vtach is nonsustained, i'm only treated with a beta blocker. The v-tach is scary though. Anywy, I'm hoping you find a good Dr that can help!

[SarahA33]

Hi Jennifer,

You've got a lot going from your end also. I see your from OH.. do you use cleveland clinic or university hospitals, or neither? Just curious as i'm debating if i'm going to head back down to cleveland for an second EP consult. I would like to see Dr. bryan Baranowski if it's possible

Also noticed your a fellow migraine sufferer. That's one of the hardest things to deal with on a daily basis. Do you mind me asking what beta they have you on for the cardiac stuff and also, if you take any migraine meds that help.

Good luck to you and Happy Holidays. I hope you enjoy your Thanksgiving w/ your kids!

All the best,

Sarah