8 Days PM Postop, back in hospital with issues...

Hello, brand new here. I am 41 years old and have a history of syncope (and seizures in childhood). After many years of no real answers or drs really believing my random symptoms/issues I had a tilt table study to which I passed out and discovered my heart stops and pauses for long periods of time along with my blood pressure dropping drastically as well. Drs initially diagnosed me with neurocardiogenic syncope though my primary Dr says that diagnosis for me is understated and should be "neurocardiogenic syncope or Vasovagal Syncope on steroids".

This surprised me as well as my Drs. They recommended a PM implant the next week. I had a Medtronic PM implanted on March 12, 2019. Long story short(er), I've been having fairly severe shortness of breathe randomly with little to no exertion (having a conversation, walking across the room, etc), light-headedness, pain deep in my esophagus or lung area as well as a dry cough with a deep inhale, and increased (more than my normal) heart rate and blood pressure with little exertion. 

I went to ER yesterday, as Drs nurse recommended. Was admitted into hospital with several tests to rule out a blood clot...to which I believe we have ruled out, as well as make sure the PM was working right, and they said it was. I was discharged this evening with really no answers. 

My incision and mobility is healing very well, however,  I just don't feel well or "right" and am wondering if this is a normal adjustment period for my body with the PM? Or possibly some other issue I need to look in to? This is all fairly new and quick for me so I'm having a hard time understanding what is normal and what isn't. 

So glad I found this support, thank you!

7 Comments

Thank you

by ArcReactorMom - 2019-03-22 11:51:05

Hello! Thanks for the reply! 

Yes, my PM was implanted by an EP, and I agree...it took me years to get past all the cardiologists waiving me off. 

I will ask my Dr about cardiac rehab as I don't know anything about that. As for a sleep study, I had 2 done 3 yrs ago which both ultimately diagnosed me with narcolepsy with cataplexy (no signs of apnea)...however, my current primary internist Dr and I agree we are trying to connect all these random dots. 

CXR?

by Sibber - 2019-03-25 18:15:56

Did you have a chest x-ray and echo/heart scan? Some of your symptoms could be attributed to perforation of one of the leads. Of course could be something else entirely but if the symptoms persist I would return to your physician.

8 days pm postop

by HAL - 2019-03-27 07:49:37

this is my condition too exactly.  I too flatline with fainting, and have since childhood.   I am 60 and it has been a burden.  I had my pacemaker put in May of 2018.   I had your EXACT same symptoms, and am on today because they are back.  Trouble getting a deep breath is scary. I will try to make this short. 

I ended up in the ER two months post pacemaker.  There’s a blood test marker for clots which I was positive for, however they did a cat scan there, said no clots and sent me home.  I felt no better, but went about my life until I called to see if the report had arrived at my cardiology office(I had my pacemaker done with an electrophysiologist a state over) and I had pericarditis with effusion.   Fluid around my heart causing these symptoms.  I went on a steroid short 6 day dose, then took colchicine for several months.  The fluid abated but is still there, and I am having symptoms once again. I am going to beg today to get in, but the reality is they just send you to the ER.  Get an ultrasound immediately.  The theory was my screw pierced through and caused a slow leak.  Good luck. 

CXR?

by ArcReactorMom - 2019-03-29 00:19:45

I did have a chest xray in the ER, as well as blood tests, and an echo. They ran blood tests again the following day.

Hal

by ArcReactorMom - 2019-03-29 00:35:06

Hal, thank you for responding. I hope you were able to be seen and get some answers. I'm becoming very frustrated with all of it and trying my best to adjust and get back to being myself. The shortness of breath is really wearing on me. I didn't have this prior to the PM. ???

Did you ever find out why your blood pressure drops randomly? My EP said that the PM will not fix that and he isn't sure why I do that, but it will keep my heart from flatlining. He thinks i still may have syncope episodes even with my PM. My primary Dr is talking about doing genetics testing to see if we can find any answers there. 

Also...lady in my EP's office told me that I need to "see a cardiologist" with these issues...even though the EP just put a PM in me and hasn't even followed up with me yet!? Basically, I refuse to go to my local heart clinic due to a terrible history of them blowing me off and treating me as if I was crazy (especially during my pregnancy with my daughter and being put on bedrest for 5 months for acute tachycardia). Since seeing the EP in another town an hour away...I have told them I prefer sticking with them but I am confused by this. Is the EP not going to follow through with me now and I have to see a cardiologist? This is all so very confusing as I am also being referred (once again) to a neurologist as well. 

Bp drops

by HAL - 2019-04-08 04:46:38

I was told I had malignant neorocardiogenic syncope as well as sick sinus syndrome.  I have fainted in response to needles, pain, flu, nausea and vomiting etc since a child.  I was fainting in the middle of the night without even standing up.  I would have a grand mal seizure as witnessed by my husband (although it is debatable whether it’s just the tonic clinic reaction to flatlining) and when I come to I’m barely conscious, and last time when EMS arrived heart rate 20.  I cannot even see. I know it’s sounds dramatic, but it’s true and it is devastating.  I see the famous Dr. Grubb at the Toledo College of Medicine.   He is the best with this.   My body just never worked right.  With four children I had three serious bouts with preeclampsia, have severe osteoporosis, MALS syndrome, retinal damage, and various POTS symptoms that are just so bizarre.  I do still work, garden, clean, workout etc but as Dr. Grubb so eloquently put it, you just don’t work right.  (My body).  The reason I mention Grubb is he feels strongly for our condition we need a closed loop pacemaker, mine is a Biotronik.   It has the ability to sense bp drops, and begins pacing earlier.  He has found much better success with this type of pacemaker for our condition.   He did say a traditional one would be of very little value for the fainting . I pace 93% of the time now, and I always get the wow cannot believe how well you functioned.   I suggest you research Dr. Grubb and his thoughts on closed loop versus traditional.   I would assume, however, the fainting won’t feel as catastrophic with the pacemaker.  My body has wanted to faint several times, and I have all of the pre-syncope symptoms, I will just have to see how it goes.   I had no choice, last faint before pacemaker was vomiting unconscious.  My husband was there but unsure what to do.  Terrifying for him.   Good luck, I don’t know anyone like me, and everyone I’m sure thinks I’m making this crap up to sound dramatic, but all true.  It really affected and still affects my life, and my willingness to try new things etc, as I have lived in fear of the next faint.  I would know upon coming to that it was really serious, and I am so sick for 24 hours, then just tired.   Good luck, look at the CLS pacemaker info.  

One more thing

by HAL - 2019-04-08 04:49:33

I just reread your comments, I too was diagnosed with narcolepsy.   Maybe there is something to this.  

You know you're wired when...

You have a shocking personality.

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I just want to share about the quality of life after my pacemaker, and hopefully increase awareness that lifestyles do not have to be drastically modified just because we are pacemaker recipients.