Hello again!

Hey there everyone. I haven't checked back in for quite awhile. A lot has changed, but unfortunately a lot has stayed the same as well.

I went to Cleveland Clinic and was officially diagnosed with vasovagal syncope. He cautioned me about taking the pacemaker out like my new EP wanted to do. He said that although it didn't completely resolve the issue, it was likely making the episodes less severe. He also suggested that I come back and be seen by the neuromuscular department and have the QSART and skin biopsies done. At this point, I'm not able to do this financially but hope to be able to soon.

On November 16th, I was switched to a Biotronik Edora 8 for the CLS feature. A few days later I was reading the manual, and was happily surprised to see a paragraph about PacemakerClub. I didn't realize that any of the manufacturers advertised the forum, but was so happy to see it.

Thankfully, I have not had a full on syncope episode since implant! I have had a few close calls where I had to lay down with my feet up the wall like CC instructed. 

Now if only we could figure out the complete exhaustion and muscle weakness, I'd be set. In time, I believe I will have the answers. For now though, I pace myself and do what my body allows. Fighting and trying to do more only seems to make things worse. 

 


6 Comments

Pacing & Vaso vagal Syncope

by Penguin - 2023-01-16 07:32:16

Hi Mae,

 I enclose two papers for you to read and maybe discuss with CC.

The first one discusses the effectiveness of pacing for ANS disorders and may explain where your previous EP was coming from.  (Note: it's not the easiest read! Complicated!)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7196018/#:~:text=49%25%20in%20unpaced%20patients%20(p,compared%20ILR%20and%20tilt%20data.

The second one is easier to understand and discusses alternative treatments or 'add-on' treatments to pacing.  These treatments 'might' be offered eventually by the CC who you say are suggesting that pacing isn't the 'complete' answer but that pacing may be helping with the severity of attacks. 

 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2888469/

This article explains the basics of the autonomic nervous system and very basically remarks on the sympathetic nervous system functions which cause exhaustion https://www.msdmanuals.com/home/brain,-spinal-cord,-and-nerve-disorders/autonomic-nervous-system-disorders/overview-of-the-autonomic-nervous-system. 

Presumably this is what the more advanced testing you refer to will look into?

You say,

'Fighting and trying to do more only seems to make matters worse'.  

I think you're onto something here. I believe that physical / mental stressors antagonise the nervous system, particularly when it's already struggling or is sensitive. Yours isn't working too well and doctors may well provide the treatments that help you.  However, achieving balance and avoiding extremes within your emotions, treatments and lifestyle may well provide benefits too.  

I wish you all the very best with your healing. 

 

Wow

by Lavender - 2023-01-16 09:40:52

You're a busy person with lots going on!

So nice that you got a Cleveland Clinic lookey-see!

Good news that there've been no syncopes for a while and maybe that indeed is thanks to the pacemaker!👀

Penguin & Lavander

by Mae11 - 2023-01-16 11:53:48

Thank you for attaching the articles. I skimmed them, but will read them fully later on. Cleveland Clinic said that my episodes as a child with fevers and during my pregnancies aligns with vasovagal. These were few and far between though. 

On April 14th I collapsed at work and my body has never been the same since. I tell everyone I'm functioning at 25-50% depending on the day.

He believes that my vaccine may have triggered whatever is going on, but not caused it because of my earlier episodes. 

That's why he would like me to go for the other testing because he has seen a few other cases of small fiber neuropathy following a vaccine.

Thanks for the further info

by Penguin - 2023-01-16 13:15:27

Hi Mae, 

I've been reading some of your other posts and spotted the SSS dx and cardiac pauses and childhood dx. Presumably the cardiac findings prompted pacing? The links I provided are relevant to this, but the vaccine 'twist' is foreign territory to me.

Did the doctor give you any hope in terms of knowing how to treat you if his suspicions are confirmed that a vaccine has caused this?  

In the meantime, if you need some funding to proceed, could you ask him whether there are any clinical researchers / trials he could direct you to?  It's a long shot but worth asking the question perhaps. 

I hope you get some answers out of this.  Will you let us know what happens? 

Best Wishes

 

Penguin

by Mae11 - 2023-01-16 13:55:44

Yes, the initial St. Jude pacemaker was placed because of the pauses. Cleveland said that this was caused by the mixed form of syncope. He said that I never should have been diagnosed with SSS. He said SSS is extremely rare in a young individual without prior cardiac surgery or congenital abnormalities. 

We didn't discuss the vaccine stuff much except what I already said. He was very clear that he feels that it was an existing issue that was dormant, and the vaccine triggered it not caused it. Which I totally agree with. 

I hope to either be able to go again in person this summer or at least have a virtual visit. Perhaps your suggestion for any clinical trials would be of benefit. He said he was apprehensive to do the cardioneural ablation because I have issues with a high resting heart rate.

SSS unusual in the young

by Penguin - 2023-01-16 17:04:35

Mae, 

He sounds like a good guy this CC doctor.  

 The Covid vaccine is something we all probably know little about in terms of what it might provoke in a variety of conditions.  The cardiac effects are a concern and it seems entirely reasonable that something as sensitive as your ANS issues might react. This doctor seems willing to explore your experiences / triggers in relation to the vaccine and that's a great recommendation as some doctors shy away from medication reactions.  

I must have missed any comments about the cardioneural ablation and the high resting heart rate in previous posts. I'll take another look.  Is the high resting heart rate due to low BP and your heart compensating? 

 

You know you're wired when...

You run like the bionic man.

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