Syncope Neurocardiogenic with Neuropathy

Hi,

 

I have my Biotronic Edora 8 DR-T for almost 2 years now, due to SSS using it a 100%.

After a tilt test they found that I also have Syncope NeuroCardiogenic, which causes blackouts if I stay to long on my feet. Walking is/was fine

2 weeks ago I collapsed having a Syncope and ended up catching a ride to the ER booking a bed for 1 week for observation.

Of course the PM was working fine, but something is there that they can't find.

I got a Holter for 1 day without finding any Arrythmia, I was lying in bed all day without physical activity.

I also have neuropathy in my right leg, thanks to the catheterism they used to look for any arythmia during the implantation to do a ablation right away.

They somehow managed to touch/damage my fermoral nerve. Of course they do deny everything. uncontrolled movement in my right leg started the night after the surgery. So it's a no brainer what caused it.

Anyway I went to Neurologist having bunch of test, all they said was , that's there for life and doubled my dosis of Gabapentin to 1800 mg a day.

I feel like a farmacy just using everything myself.

Back to my issue. After 2 weeks getting back home I started walking again. I used to walk 6 km in the morning without getting out of breath, now after 500 meters I get headlighted and dizze, out of breath.

Anyone has experienced something similar or is aware of someone?

I don't know what else to do, so do the doctor's reaching a point of losing hope to be able to live a normal life. 

Let me know your thoughts. We have some great people here that should be doctors, or at least consultants.

Jorg

3 Comments

Biotronik device

by Penguin - 2023-10-09 10:10:53

Hi Jorg, 

Just interested to ask you about your PM and whether it helps with the syncope? 

One of the Biotronik models (or possibly more than one) is recommended for syncope disorders.  Have your doctors discussed any settings with you? 

There's an algorithm that's supposed to 'catch' your h/rate when it falls to prevent a faint. 

Does your PM have this feature? 

 

 

 

SSS

by Farmer - 2023-10-09 10:25:17

Hi Penguin,

my PM is setup to start at 60, and my private Cardiologist set up the PM to help preventing the Syncope, at least that she told me.

I was surprised that something like that could happen with my PM.

It's like I got a reset and have to start over. My appointment is not until end of November.

I will ask her to set it higher. The ER doctor did mention that I might need a different PM, that's why they hooked me up for 24 hours to a holter. I will have to go private with everything and hope to find the cause. I've had alread 3 MRI's and a lot of other tests done.

I'm sure there is something they miss, that causes the Syncope, tiredness.

All they do is concentrate on the PM which of course is working fine.

Pacer/syncopy

by ladybug55 - 2023-10-12 02:01:20

This pacemaker should help,with syncope. For me it detects my drop in blood pressure upon standing and paces faster. 
 

IK it works because I'm currently being evaluated for a lead failure.....and I've passed out once and nearly passed out several times ....which is not my norm.

 

dysautonomia international has great information about syncope on its web site  and Dr. Blair Grubb has authored articles about pacer ( and implanted mine)

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I had a pacemaker when I was 11. I never once thought I wasn't a 'normal kid' nor was I ever treated differently because of it. I could do everything all my friends were doing; I just happened to have a battery attached to my heart to help it work.