Today's follow up

Crossing My Fingers

by MinimeJer05 - 2021-10-07 18:19:13

I hope this new treatment plan offers you some meaningful help. Nothing worse than having difficulty pinpointing what works best for YOU.

One thing I learned on this PM journey is that we are all so different and what works for one of us might make things worse for the other.

Best of luck with everything!

Jer

Thanks Jer

by Mae11 - 2021-10-08 11:00:06

I agree completely! While I know that my EP is very experienced in his field, I feel like he is used to his typical patients, and was not fully listening to my complaints. The NP I saw yesterday was great, sat and talked with me and explained things in much more detail.

I pray we are getting closer to straightening things out! I love roller coasters, but this one not so much!

Understand Completely

by MinimeJer05 - 2021-10-08 12:42:40

I understand completely! I originally was frustrated with my medical team as I felt that things weren't getting better after my PM implant and I kept sending messages and was mostly getting shurgged off (or so I thought?), but later realized that my team was actively working on a solution and it just took them some time to share the info with me. After that, I have felt much better about how things are going.

Yes, this doesn't sound like the fun type of rollercoaster at all. Hopefully your new treatment plan makes sense and starts showing you some positive results. Remember, this all takes time and patience can be the hardest thing to have when it comes to your heart and the things that you are experiencing. Unfortunetly, everything needs to sort of "run its course" when it comes to adjusting meds and trying new things -- give it a week or so and make sure to document as things are happening/changing, whether that's for the better or the worse.

Best of luck!

Jer

You have done well Mae

by Gemita - 2021-10-08 13:02:43

Thank you for the update Mae.  You were busy yesterday and seemed to have got a lot out of your consultation.  Both your additional diagnoses seem to fit in with your autonomic problems and I hope they will take these into account when treating you in the future.  You are indeed a special case and I hope your doctors will learn something new from you as well.

I have not tried Diltiazem but I have been told it may work better for some patients than a beta blocker especially if patients have vagally induced arrhythmias (occurring during rest and generally stopping with activity).   For some patients vagally induced arrhythmias can be worsened by taking beta blockers, although clearly not everyone experiences this.  I am on low dose Bisoprolol.  At higher doses, I have noticed a worsening of all my arrhythmias.  

Mae I hope any new treatment will quickly help you but if not, please remain optimistic and patient.  Getting our arrhythmias under control is not easy as you are discovering but it can be done.  As you know, we have a few medical conditions in common and I have successfully controlled my arrhythmias with patience and trial and error.  I am sure it will be the same for you too.

Gemita

by Mae11 - 2021-10-08 13:37:27

Thank you so much, Gemita! I always hope for a response from you on my posts, as our conditions are somewhat similar.

I am trying my best to remain hopeful and optimistic, though it's been trying. No matter how terrible I feel at times, the show must go on. Life with 3 kids, a husband, and a home doesn't simply stop because of how we feel. Leaving my appointment yesterday was the most optimistic I have felt through this journey.

This may sound rather stupid(and I apologize if I does), but with a diagnosis of IST, is my original diagnosis of SSS negated? I would assume not, as SSS can cause the sinus node to fire too fast or too slow. With the pauses I was having, I would think this stands..?

Hopefully we are on the right track, and if not trial and error as you said. 

You still have Sick Sinus Syndrome

by Gemita - 2021-10-08 14:59:23

No one ever asks stupid questions on this forum Mae.  We all do our best with the knowledge that we have at any given time.  

Yes, you will still have the diagnosis of Sick Sinus Syndrome (SSS) which is the primary reason for your pacemaker, but in addition they have now confirmed the occurrence of Inappropriate Sinus Tachycardia and seen clear evidence of orthostatic hypotension.  Perhaps they will consider further autonomic testing.  I believe they have also previously seen SVT and Atrial Flutter, but once we have one arrhythmia, it may trigger another.  For example my Atrial Fibrillation was a trigger for my Atrial Flutter.  I also have Atrial Tachycardia and SVT, although my EP places all my atrial tachy arrhythmias under one umbrella.

With autonomic problems there may be considerable overlap between diagnosed conditions and trying to determine the exact cause for your symptoms is not always so straightforward.  Most of the time my pacemaker prevents syncope, but because I have intermittent swallowing problems (oesophageal dysmotility) which can trigger sudden arrhythmias at exceptionally high heart rates and sudden crashes in blood pressure, I can still experience pre-syncope/syncope even with my pacemaker.  I have though learnt to manage this better, but it is not easy.  

Autonomic testing

by Mae11 - 2021-10-08 15:50:46

Your input always gives me a sense of relief! The diagnosis of SSS not being discarded was my take on it, though I wanted to be sure.

I'm assuming something along the lines of the new diagnoses was what the neurologist was getting at when saying superimposed dysautonomia. Just a guess though. 

I'm not sure if they will consider more autonomic testing, considering the EP wouldn't do the tilt table test as suggested by the neurologist. Perhaps he figured he already knew what the outcome would be, who knows. I believe I read awhile back that there is a center in Chicago(not horribly far from me) that does full autonomic testing. 

Sick Sinus, Autonomic Issues, Meds.......

by Marybird - 2021-10-09 13:01:54

Hi Mae,

Hopefully you're well on your way to figuring out just what your tachycardia, sinus node,  blood pressure, autonomic dysfunction issues may be, and can get a handle on these so you can go about your active lifestyle with your family and so on.

You know, when I read of yours, Gemita's and others' struggles to keep your arrhythmias under control, when you have to battle low blood pressure made worse with the meds intended to keep the tachys under control, I realize how much of a struggle it is to find a balance between both these problems. I also struggle with tachy-arrthymias, but I have high blood pressure that tends to be somewhat resistant to treatment so I can take enough meds ( I take both metoprolol tartrate and diltiazem in fairly high doses) to keep the tachycardias -including afib, under control most of the time. I have to say I'm lucky in that regard. I take two other drugs to control the blood pressure, ane along with exercise and watching my diet, do a fairly decent job of keeping the blood pressure more or less in within a normal ( or just above)  range. But it's never low...and the pacemaker keeps the heart rate from tanking. 

It'll be interesting to see if you notice a difference in your blood pressure, tachycardia with the slower acting metoprolol succinate ( ER). I know of several,people ( one of them my sister) whose blood pressure tanked with metoprolol and was told not to take it. It could also be dose related, though it seems again there's a balance between the doses needed to keep the tachycardia under control and keeping the blood pressure from tanking. I still have breakthroughs even with 150 mg/day of metoprolol- that dose would most likely put someone with low blood pressure under the table, but it doesn't make my blood pressure low. 

I also take diltiazem, which isn't as effective at controlling my tachys but I think it may act in conjunction with the metoprolol to control the tachys-I seem to have fewer breakthroughs when I take both. From what I have read, diltiazem lowers blood pressure when it's high, but doesn't lower blood pressure so much when it's in the normal range. So it may be "gentler" for those with already low blood pressure, my sister takes it as a rate control drug for her afib (she has sick sinus syndrome and a pacemaker too) and swears by its effectiveness- even in a low dose. I know of two others who use it for blood pressure control ( I do too). I think how effective it may be is a matter of trial and error for each person. 

As for the Inappropriate Sinus Tach/orthostatic hypotension, though they do use the tilt-table test to diagnose this condition, it's not without its risks ( some people pass out completely, sometimes the heart pauses for some time. Lets just say some people with this condition just don't do well. If your providers saw enough during your visit with your orthostatic hypotension,  they may figure they have enough information with your medical history to come up with the diagnosis without the tilt table test.

My daughter has struggled with inappropriate sinus tach, orthostatic hypotension and other autonomic issues for years, and she loads up on water and salt as she needs to, takes midodrine at times when her blood pressure tanks, and diuretics to control tissue fluid buildup- it's a juggling act with her, it seems. She had incessant tachycardia ( resting heart rate of 130, it went up from there) when she was diagnosed years ago, and had numerous ablations ( including one for afib). They ablated her sinus node, which resulted in her needing a pacemaker. I don't believe they do that any longer, as there are medications available now that specifically target sinus node tachycardias, and I understand they are effective. One is a drug approved by the FDA for heart failure ( used off label in the US for sinus tachycardia-used for sinus tach in Europe for a number of years before it was available in the US. My daughter's EP prescribed it for her for possible heart failure ( there was a disagreement between cardiologists as to whether her symptoms/findings were due to heart failure) and just to help with any possible left over sinus tachycardia, she thought it helped.

The drug's name is Corlanor, and it specifically targets the "funny circuit" associated with sinus tachycardia. It's pricey, being a brand name drug, but the manufacturer has a decent patient assistance program which can bring down the cost to the patient significantly. My daughter used the drug for several years, and renewed the patient assistance program yearly. I've also seen the generic name out there, " ivrabidine" but don't know if there is a generic available these days. Anyway, it might be a name you can keep in mind for future reference. 

I wish you good health and the best of luck.