Spasms at heart

See your doctor

by Jimmy Dinfla - 2018-05-25 23:50:08

Recommend an appointment with your cardiologist ASAP!

One of the reasons your device may not be capturing the irregularities is perhaps a device setting.  Mine has a threshold level.  If the situation doesn't reach the pre-programmed threshold, it doesn't record anything.  The recording threshold is adjustable for my ICD.

Thanks

by ScottfromGA - 2018-05-25 23:57:14

Thanks for the tip! I didn't know that about the threshold. I actually have an appointment on Wednesday, so good to know! I know they've adjusted me 5-6 times already.... Guess they will do it again. 

Hello Scott & Welcome to the Club

by NiceNiecey - 2018-05-26 01:27:29

Scott, let me just say that you have a smart wife.

I do not have SSS but I've read about it here and I know a woman that has it.  From the little bit I know, it appears to be an unusual ailment that can be difficult to control.  However, I find it disturbing that you're still passing out after receiving a PM and having been adjusted multiple times in just 5 months.

I am glad you have an appointment to see the doctor on Wednesday.  In the meantime, I would urge you not to drive.  

What you are experiencing is not normal and needs to be addressed.

I would encourage you to use the search function on this site (the litle magnifying glass next to the LOGOUT tab).  You'll find lots of posts about SSS.  Although electrical problems of the heart don't disciminate by age, you are certainly a young'n and need to get your life back on track.

While your experience is not typical, I am confident that in time, this rough patch will be a distant memory.  Your PM will improve your life, not complicate it!  I'm so happy your wife told you to come here!  Would you please let us know what happens on Wednesday?  And if you aren't satisfied after that appointment, get another opinion.  

Hang in there!

Niecey

Thanks

by ScottfromGA - 2018-05-26 11:39:15

I have my theory as to why I'm still having black out spells after my PM and meds.....and it lies with "no insurance". My job fired me while I was in the hospital getting the surgery because when I filed for American Disability Act papers, they denied them because I couldn't perform my duties due to the doctors directions.  So, the official term was "Couldn't accommodate my health issues" because I couldn't drive a lift anymore....which I know they had accommodated numerous people, but I'm getting off subject here....

But yeah, subsequently being fired and not having insurance is why I believe they are just trying to patch me up and not be extensive with my recovery. It's been 6 months and I do feel better.  But I have no energy...when I do get active, the spasms/flutters start and i have to stop.  I have shortnesses of breath, dizziness and small pains to dull pains in my heart area.  Which I've stated earlier, the pains have been there for a while  Honestly, like yesterday, I wasn't doing anything and they were happening.  I'm kind of at a loss as to what to do cause I hoped this would be a fix but now I'm worried I might have to live with this for the rest of my life and I'm only 35.  I've never thought I'd have to file for SSDI but I'm awaiting that now.  Thanks for the advice and tips guys.  Just one step at a time.

Going unconscious isn't a "slight" issue... and it shouldn't be happening

by Gotrhythm - 2018-05-26 15:55:37

Blacking out is serious. It's bad. Very, very bad. It's totally rational to find it alarming. You need medical help and you need it now but it's clear that the doctors you've been going to don't have a handle on what is wrong. Not saying they're bad doctors or not doing their best. But if they haven't known how to help you so far, I doubt if they will know more if you go back.

Clearly what is going on with you isn't typical. It's time to go somewhere that sees the atypical, unusual cases all the time. That means a major medical center associated with a university.

I understand that the lack of insurance is a problem. Going through the ER at a major medical center can be a way around the system. Just saying.

Thanks

by ScottfromGA - 2018-05-26 22:42:31

Sorry, I can be too modest at times.  I know that its not a good thing to be going through episodes of syncope but its just how I talk.  I apologize for that.  I just cant wait for my appointment on Wednesday, its becoming to beat more and more while becoming very noticeable.  It went from a little flutter to "dang, my heart is beating harder than normal".  As I speak, im just sitting here and I can feel my heart beating, as in legit i feel my body kinda rocking.  Almost like someone is lightly to moderately thumping me with their thumb.  Thanks so much for the advice guys....I haven't gotten behind the wheel of a car since yesterday and probably wont again until my appointment.  

i feel the same way about the Doctors though, i've honestly questioned it since day one.  While i was at the hospital, the EP was trying to send me home because my heart rate dipping into the high 20's "wasn't a big deal for him" because I was only doing it when I was asleep.  I looked at him and questioned him as to why he thought it was only while I was asleep to which he replied "Its the information I was given...." to which I reached into my gown and pulled out my heart monitor that I had attached to me that gave telemetry readings on the screen.  While I was sitting there in the bed, wide awake and talking to him, I was at 27.  His mouth dropped and was like "Oh man!"  Yeah....wrong info, Doc.  So....I'm going to give them this last chance and if they can't get me at least where I'm able to sit and enjoy my time without grabbing my heart or losing my breath due to flutters or spasms....or whatever they are, I will probably go find another cardiologist.  Even though I'm kind of in a between a rock and a hard place when it comes to would another Doctor touch me with it not being their work and once again, the lack of insurance.  I dont know what to do....but I'll cross that bridge when I get there, I suppose.

Once again, Thanks so much again for the information so far.  If anyone else may know what this may be or what it could be.....possible scenarios, anything, please feel free to comment.  I've been reading one that claims if a lead hasnt properly seated into place like it should, it could cause what I'm feeling.  If it is the case, I could potentially have to go back under the knife so the Doctor can fix it....which won't be fun at all because the second surgery can be a tad bit harder to get over.  I'm not so much ready for that.

OH, before I post this comment.  One other question, does anyone else's area still hurt or did it still hurt 6 months after the implant?  My area has been on fire the past 3 weeks and has still been sore ever since the surgery.  I've brought it up to the doctor at all of my visits and they just look at the area saying it looks okay and how it should.  Underneath is where it hurts, very sore and touchy.  Today, it flat out hurts.  Anyone have some information they can share as far as that goes as well?

Going unconscious isn't a "slight" issue... and it shouldn't be happening

by AgentX86 - 2018-05-26 22:46:32

Gotrhythm is absolutely right.  You need some real help, ASAP.  I'm not sure where Lizetta is (doesn't seem to be in GA, as your name suggests) but if you're anywhere near Atlanta, I've been exceedingly happy with the care I've received at Emory University Hospital (both locations).  I've had issues with the office types but the medical staff, from orderlies to surgeons, has been top notch.

hey

by ScottfromGA - 2018-05-26 23:10:48

No, it's Lizella, not Etta.  Its right outside of Macon, in Central GA.  I'm going to start searching for some help as soon as Tuesday comes, hoping this doesn't get any worse tomorrow or Monday.  If it does, i'll be heading to the ER once again.  Not a fan of that but hell....I got a kid and a wife to think about.  It's rough....

See an EP

by NiceNiecey - 2018-05-27 02:45:56

Another thought, Scott.  You should try to see an electrophysiologist aka EP.  They’re cardiologists with special training in electrical stuff.  

It sounds to me like you’re having a voltage issue and that can be tweaked.    The first year can be frustrating but you’ll get there.

And don’t throw in the towel on work just yet.  Now that your PM has healed (we hope . . . ) you should be able to drive a fork truck again.  Just make you’re not going to pass out while doing it!

SSS

by sam295 - 2018-05-27 06:33:15

I have the same and yes am still fainting with SSS have fainted twice since having to get my PM.  I am desparately trying to get someone medical to help me.  I have my PM checked and they have said it is working ok, no mention of changing thresholds. So sorry I cant assist but if I get am answer I will let you know.

What it means to have a rare condition

by Gotrhythm - 2018-05-27 15:05:09

Our guessing what's going on with you really won't help. The same symtoms can be caused by different conditions.

That being said, I had symptoms similar to yours--heartbeat doing weird things, nearly passing out, but with the addition of somtimes severe chest pain. I went back and back to my heart doctors. Two years passed as I slowly got worse. Interrogation showed my pacemaker was working "fine". Any adjustment seemed to bring about temporary improvement--but only temporary. My EKG was normal, nuclear stress tests showed no blockages. Oddly enough, no one ordered a repeat Holter monitor and at that time I didn't know enough to ask for one.

I kept thinking if my doctor just had more data, the clinical picture would come clear and she would know what to do, or she would recognize the problem as beyond her expertise and refer me. Finally, I realized she had no idea what was wrong and so had written me off as a nutcase--thus allowing her to make her ignorance my fault. No blame. Doctors are just as human as everyone else.

But that's when I woke up and saw that I had to advocate for myself. I reasoned that she was a good doctor and if what I had was obvious, she would have known about it. Ergo, what I had wasn't obvious, typical, commonly seen. Therefore, the chances were no other local EP would recognize the problem either. Therefore, if I wanted to live, I had to go somewhere the rare and unusual cases are seen.

Duke is about 50 miles away. There they discovered that I had PVC induced PMT (pacemaker mediated tachycardia.) Not just rare but very rare. They saved my life.

Here's what you need to know. 90% who have pacemakers do fine. No problems whatsoever. Some problems are relatively rare but easily dealt with by a few adjustments to settings. Fainting post-pacemaker, if you don't have neurocardiogenic syncope, is exceedingly rare. It's really possible that your doctor has never seen a problem like yours before.

When you go back on Tuesday, if you haven't recently had a Holter monitor test, ask for one. Also ask for a referral to Emory.

It sounds like your wife is supportive of you looking for some other answers and will help you get anywhere you need to go. I looked it up. Emory is about 90 miles away.

Will Do!

by ScottfromGA - 2018-05-27 15:35:43

Thanks for the heads up there. I feel as if I'm already held in the area of a "nutcase" to the doctors. I'm not as forgiving as you as I'm not one to accept them being human when it's their job to tend to me if I'm still having issues.  The passing out HAS become more rare, that is something I want to stress....but yesterday, I can't say if I passed out when I switched seats with my wife when I pulled over or what but the second I sat down in the passenger seat and laid it back, I don't remember anything till my wife was driving me to the ER, (which I ended up declining to go because I felt better when I came to), when she nailed the brakes and the motion shook me awake.  It was very odd....but about an hour or so after waking up and getting back home, I started having the bumps again.  I'm just not sure what to call them....bumps, spasms, flutters or heartbeats...it's not normal, I know that. 

The referral to Emory is going to be a stretch....but it may have to be done.  I am going to ask for my MRI I'm due since it's been 6 months now since the surgery amongst other things.  I'm definitely not going to just "get adjusted" and get sent home again....it's time to get to the bottom of this.  

Thank all of you guys. 

Results so far....

by ScottfromGA - 2018-06-01 10:44:03

Okay, so far I've had the St. Jude tech come in a test me for all the things you guys mentioned and asked questions to her for reference. She was as thorough as a tech as I've ever had. She said I'm pacing fine but have had 14 episodes of sinus tack since last week. She doesn't think it's a PM issue than more so an issue with controlling my SSS with medication.  The doctor hasn't came in yet, so I'm going to ask her questions as well. The tech said those 14 episodes, all about 150bpms and I haven't been very active since my episode last Friday at all, could cause me not to feel great....so that's a step.  Other than that, my PM is "Fine" and "Everything looks great". More after the doctor comes in...

Verdict on their end.....this time.

by ScottfromGA - 2018-06-01 18:46:46

Okay, so I had my appointment moved to Friday instead of Wednesday....so that's why it happened today.  They found 14 events of really high heart rate from last Friday to this Friday, which may could account for my flutters/spasms.  Doctor upped my Fludrocortisone to two pills a day and Metatrophol twice day.  For the pain I'm experiencing around my incision area, she proscribed me Neurotin for the damaged nerves from the surgery.  I asked her and the St. Jude alot of the "probables" you guys listed here and they all came back negative, which is a good thing.  The first thing the doctor admitted to is that we have to get my heart rate understand control because I'm running 150-170's just sitting still or at light/moderate work.  All I've been able to do is housework, such as laundry or dishes...taking garbage out.  Light stuff.  Sounds like my SSS needs to be gotten under control more than anything.....here goes nothing, I guess.  The St. Jude tech did stress that this could be a long going process....which I agreed.  I was in my appointment a total of almost 2 hours, so they tested and explained alot this time.  

Thanks guys!