5 Days Later

What's your INR?

by crustyg - 2021-09-10 08:03:55

I've read your post a couple of times, and this time I wondered - just wondered - if these could be TIAs?  With a mechanical valve you will be on warfarin or that family (IIRC the NOACS are contra-indicated for mech valves), and that can be difficult to control.  Generally they try to avoid putting pacing wires into patients who are fully anti-coagulated, and perhaps they gave you a little FFP (can't use Vit-K) to get them through the procedure (the effect doesn't last very long).

Probably more likely is that you are having short runs of an arrhythmia (prob VT), which would drop your BP for a few seconds and might feel really odd.

In your shoes I would call my docs and get seen ASAP (you say this is scheduled).

Best of luck.

INR

by MinimeJer05 - 2021-09-10 09:43:23

crustyg,

thanks for responding. It helps to feel a little bit normal when others are able to offer up some opinions. 
 

I have been on warfarin since my previous procedure. I normally take a 3mg tablet in the evening. I don't recall if they had me stop taking it before surgery or what. 
 

As for your guess of an arrhythmia -- I should provably stay away from Google because of course the first thing I see is heart failure and death. I really hope if that is the case it's something they can fix or help me regulate. 
 

thanks again for reaching out and commenting  

foggy vision

by Julros - 2021-09-10 11:21:54

I have experienced "foogy vision" which seems almost like I am looking through a screen. It happened once when I was bicycling home and felt too weak to pedal up a small hill. When I got home I checked my bp and it was 80/40. I have since cut my lisinopril dose in half and have no more "foggies" and bp 110/70.

As usual, crusty offers great advise to call your doc. 

 Yes, step away from the Google Machine!

Foggies

by MinimeJer05 - 2021-09-10 12:16:15

Thanks for the input. Oddly enough I was on that same medication after my open heart surgery, but they took me off after 3 months. 
 

I will be seeing my primary today at 1, but fairly certain they're just going to say "bring it up to cardiologist on Wednesday", which I understand, but it can be frustrating as I am not going to be stepping behind the wheel of a car until this is figured out or until this stops happening. 
 

did it take a few weeks for everyone to kinda get back to normal? My docs made it sound like oh just a couple days and you'll be fine. My arm and shoulder definitely feel better today than the day I got home, but everything is still sore and energy seems to be low.

Foggy vision

by Selwyn - 2021-09-10 12:16:39

If both eyes are affected, it is very unlikely you are having a TIA - relax. In any event you are seeing your doctor tomorrow. Very wise.

We all have had increased anxiety with health problems. This can cause you to go light headed, have some 'woozy,'vision, be tired, short of breath etc. This is especially the case if you have other symptoms. 

It is important to exclude physical anomalies ( eg. anaemia, heart problems, BP dropping etc. )  - a doctor's review would be important for this. 

If you are having panic attacks, correctly identified by yourself ( Well done!) then you have a general high level of anxiety. I would bring your "terrors" to your doctor so that your demons may be addressed. Have the strength to mention this to your doctor.

Adjustments

by Theknotguy - 2021-09-10 12:42:15

Jer:
After you heard the "it's a walk in the park" comment, the comedian Jeff Dunham would say via Walter, "Hold onto that dream!"  What is smooth and straight forward for others unfortunately might not be so in your case.  Sorry if it happens that way for you.  For most people it settles very quickly and they go on with their lives.  

It wasn't for me, but then I also had two rounds of CPR, a chest tube, and a six day coma to get over.  It was a total of two years for me to "get back to normal".  I don't think you'll have the level of problems I had but there is an adjustment period.   Hopefully the doctors will be able to help you get rid of the foggy situations.  

They used to keep the voltage high just after the implant procedure for the first thirty or so many days to get the heart adjusted to the leads.  Then they'd lower the voltage.  Sometimes that can cause problems.  

The area under the clavicle where they run the leads into the heart is very sensitive.  People have reported on the forum they have had pain and unusual sensations on the same side as the implant.  The pain and unusual sensations going up into the jaw and even the ear. Others have reported flutter feelings in the chest and stomach area.  It's all related to the implant and how sensitive some people are.  

After the skin over the implant heals there is additional healing that goes on underneath. Some people report "ant bite" feelings as the sub-surface area heals.  Other people have reported sharp pains in the pacemaker pocket area that last a few seconds and then just go away.  It's attributed to nerves healing but frightening when it first happens to you.  

I went back to working in a wood shop after nine months.  I'd be OK during the day but the next day it felt like someone had wrapped my pacemaker in sandpaper and scrubbed it around in the pocket.  It would take me two to three days of using hot packs, cold packs, and Tylenol to ease the pain.  That went on for over six months.  Now I can do what I want without any pain - well, almost.  But my other pain is due to age and over extending myself.  

While reading this, it sounds worse than it was.  Point being there are adjustments that go on for a while and the "walk in the park" people either didn't have the problems or quickly forgot them if they did.  Not everyone is so lucky.  Even though I did have problems I still consider myself lucky.  At least I'm alive to complain about it.  

Otherwise, I hope your adjustment to your pacemaker goes well.  My best wishes for your future.  
 

Feedback

by MinimeJer05 - 2021-09-10 18:29:23

Thank you everyone for the feedback, kind words and overall information and encouragement. 
 

My visit with the primary went mostly well. She took off my pacemaker bandage and said things look great, no signs of infection. 
 

As for the vision spells, said that it could be heart related or effects of healing, anxiety and just the suddenness of it all. I have a cardiologist appt set for Wednesday and was told to just lay low and if things stay the same or get better, then great. If they get worse, obviously go into ER or make a call. 
 

she believed anxiety could be making things worse, but not the only culprit. I have been prescribed some anxiety medications for the week to see if that helps things and encouraged to continue staying hydrated, getting plenty of rest and eating enough carbs and protein. 
 

One positive takeaway is I had my wife drive me to the hospital for my appt and then to Walgreens after and not once did I experience any sort of vision spells. I did feel  kinda "crappy" and tired and just weak, but nothing in my vision was bad, nor was my heart rate irregular. 
 

hoping for a relaxing and uneventful weekend. 
 

I also just want to say thanks again for those that replied. Knowing your not alone can be half the battle sometimes. 
 

Jer

Replies

by MinimeJer05 - 2021-09-10 18:33:58

@Selwyn 

it sounds like you were right with the anxieties and my doctor seems to want to keep an eye on them and see if they're playing a larger role in all of this or not. 
 

@theknotguy

wow -- that's one wild story and I am so glad to hear that you're okay and eventually started feeling better. That really puts things into perspective for me and makes me realize that while I may be experiencing issues and discomfort, there's always someone else out there that had/has it worse. 
 

thank you for the kind words and I wish you continued health

Vision

by AgentX86 - 2021-09-10 23:50:19

I think Julros is in the ballpark.  Low blood pressure can certainly cause temporary vision loss.  When the heart goes wonky low blood pressure isn't a surprising result, even after the "fix".

You might want to consult a neurologist, too.  I thought I was having heart issues but neither my EP or cardiologist had a clue what could be happening and really weren't taking it seriously, IMO.  ...until I had a full-blown down-and-out seizure.  That got everyone's attention. Still does.

Seizure?

by MinimeJer05 - 2021-09-11 02:36:58

AgentX86,

were you seizure prone? What ended up being the cause for yours and are you still having them? That's kind of my fear that these get crushed off and all of a sudden something worse happens. 
 

has anyone had any weird sleeping issues? Two nights in a row now I've gone to sleep at my usual 9-9:30pm feeling pretty tired and exhausted, even took melatonin once and then suddenly I'm wide awake just a few hours later around 12:30am. I'm trying to guess that maybe I'm having snoring issues and kicking myself awake, because my heart is pacing at about 95, which is what I pace at when I'm sitting on the couch in the afternoon. My sleeping/resting average is usually a tad lower at like 58-65. 
 

last night I was up just kinda sitting in the dark unable to fall asleep until about 3:30am

ive been sleeping on my back due to the sore arm, which is very uncommon for me, so that's why I'm thinking some sort of snoring causing me to wake up? 

wide awake

by new to pace.... - 2021-09-11 08:38:10

My problem is the  melatonin in foods that i eat.  After eating Fall asleep immediately than wake up  15  minutes  to a couple of hours later with super energy.   After eating foods with Tryptophan  can sleep all night.  Such as Bananas, Chai Seeds and of course Turkey.  NOw do not eat the above foods anymore.  Since at least for me also became groggy as if i had a hangover.  Became a morning person since i stopped eating Bananas in the morning.

Vision might be a lack of drinking   enough  plain water. You up the amount of plain water you drink and see how that makes you feel.

Water

by MinimeJer05 - 2021-09-11 09:30:24

@new to pace 

thanks for the tips! I will have to keep an eye on what I am eating. And I am making an extra effort to stay hydrated - I even bought one of those water bottles that bugs you if you haven't drank enough for the day. 
 

I just woke up for the day. I can honestly say this is the FIRST night since I got home last Sunday that I feel like I got good rest. I still woke up a few times and tossed and turned, but mostly feel rested. Curious to see how today goes with a better night's rest. 

Updated Feelings

by MinimeJer05 - 2021-09-11 10:28:30

Ugh,

I feel like my story just never seems to end at "normal" I've noticed since last night and all of this morning, I experience a brief tingle or like warm sensation on my left (side of pacemaker) side of chest. Like breast/side/sometimes in arm. 
 

i can't do anything to make it happen, it just sort of pops up and then lingers for a few seconds, but might keep appearing in little bursts for a few minutes. 
 

anyone else feel that before? I was dumb and Google'd it again and of course it says deadly perforation. 
 

the feeling isn't painful. I just don't know if I should ignore it and chalk it up as surgery recovery/pacemaker settling or be worried? I have a cardiologist visit scheduled for Wednesday. 

symptoms

by new to pace.... - 2021-09-11 12:06:25

Certainly hope you are not trolling us.  who have taken our time to help.  It seems you have been taking your time to find other symtoms that others have had on this forum.  An than  using them for yourself.  

Been there

by Gotrhythm - 2021-09-11 15:35:12

I am familiar with your symptoms. Sudden weakness in legs, vision disturbance, warm sensation. Sit down a minute and it goes away. Trigger not obvious. Sometimes happened when I was standing or walking, sometimes sitting. If it occured at the same time that my blood pressure was being checked, the cuff would suddenly deflate and there would be an "error" reading.

Sometimes all of the symptoms occured together, sometimes only the weakness, or vision disturbance. 

In my case, the vision disturbance was seeing black dots that filled my visual field (no, not floaters--more like black ink droplets sprayed on my glasses.) The warm feeling was in the center of my back.

It's pretty common for people to be afraid their pacemaker is broken or is malfuctioning. Fortunately pacemakers are very reliable. But just like everyone's face is different, everyone's heart is different. Problems can occur when the heart is reacting to being paced in some way that was unanticipated, and the settings aren't right for you. 

In my case I turned out to have PVC-induced Pacemaker Mediated Tachycardia. My heart didn't like to be paced in the ventricle.The pacemaker settings were changed and the problem solved.

Do tell your cardiologist. Don't ask if the problem is your pacemaker. They'll say "It's working fine." And it probably is. Ask if you need the pacemaker settings to be adjusted. It's possible that tweaking your settings will clear up the problem and set the stage for having you feel really good soon.

Sounds like me, pre-pacemaker

by TLee - 2021-09-11 16:29:53

I was having episodes of pre-syncope that I could describe almost exactly as you have, with the blurred vision, etc. I might say more a closing-in of my vision, but the other stuff, like inability to focus on what was going on around me--yep, I could be working on the computer & my head would kind of drop, and even as some voice inside told me to TRY to concentrate, there was no way to continue with whatever it was. Also, the jelly or weakness in the limbs--I would feel something like pins & needles or numbness, and it would almost feel that it was moving up my legs/arms. I would also feel flushed, usually as I came out of it.  All this happened in a matter of seconds or maybe a minute at the most. 

As I said, this was before my pacemaker was implanted, and was caused by my heart actually pausing for a few seconds. I was experiencing episodes of a-fib, and my doctor described the pauses as my heart being "confused" when trying to return to sinus rhythm. A pacemaker should prevent this--the pauses, not the a-fib. For example, my pacemaker prevents my heart rate from going below 60bpm, so a pause should be impossible. I don't know & couldn't hazard a guess as to what would cause such similar symptoms with a functioning device in place. I agree that a consult with your doctor asap is a good idea. Good luck! 

ER Visit Went Good

by MinimeJer05 - 2021-09-11 18:16:54

@new to pace 

I am certainly not trolling anyone. These are real things happening to me and I'm just explaining them the best that I can. I really do appreciate all of the comments from everyone, including yourself -- you guys and gals are helping me make sense of things and feel a little bit more normal.

@gotrhythm

i am going to make note of this! Thank you for sharing this information. This is the first time I've felt a little relieved knowing maybe it's just as simple as a settings chance to get me back on my way.

@TLee

I'm glad you were able to get your situation in a better state with the pacemaker. I don't know much about a-fib, but it sounds scary and I hope the worst is over for you.

as for my ER visit, they did a pacemaker interrogation, a chest scan, EKG and lab work. Everything looked fine and they said I shouldn't worry as long as it's just the warm and tingle feeling and not any sort of pain or tightness in chest or shortness of breath. They had the cardiologist assure me it was likely just post-surgery jitters or maybe even nerve/tissue/muscle damage and nothing to worry about from a heart standpoint.

they also had me take an anxiety pill that I've now been prescribed (hydroxyzine) and that seemed to calm me down and just put me in a better state.

I can happily say that I experienced no vision spells while being drove to the ER, while walking into/out of the ER and while stopping with my wife to pickup a prescription at Walgreens.

They urged me to relax and not push or test any of the motion/vision stuff until maybe Monday as they still don't know if it's just exhaustion from surgery, heart issues, anxiety issues or a mix of them all.

on Monday I will attempt to go grocery shopping with my wife and hope for no events or issues or discomfort. Hopefully I have nothing to report on that and visit with my cardiologist on Wed and can start getting back to "normal" soon.

Trolling

by AgentX86 - 2021-09-11 22:39:56

Like New, I hope you're not trolling. If you are real, please understand that we've had a Golden Gate Brige of trolls over time, most with a similar footprint.

That said, to answer your questions...

No, I'd never had anything like a siezure before, other than pre-syncope that bought me the PM. The guess (guesses and pills are all neurologists are good for) is that untreated AF, years ago, caused small clots which then caused micro-infarcts (micro-strokes).  These then change the propogation of brainwaves and things get out of sync.  The problem with the diagnosis is that I didn't have the aura until sometime between my CABG and PM implant (three to seven years ago), when I was on Eliquis and had an AtriClip.

The symptoms I had were the pre-seizure aura. Each one put me on the edge of a seizure but that one time it went over the line.  I've had no more seizures but I have had the auras.  Not as frequently (one day every other month, rather than every month) and a lesser intensity.  Better living through chemistry (and I'm a chemical dump).

There are other issues, too, one that not even my neurologist noticed or took very seriously but his PA nailed it Wednesday.  Not that it matters but it tells me that I'm not imagining things and to be careful (I was anyway).  Another lesson, PAs and NPs are medical professionals too.

My real point is that because you're thinking horses it may really be a zebra.  It would be almost impossible for your pacemaker to be defective but that's where we look first because that's on our minds.  Even the professionals can't see the obvious stripes at times.

Sleep.  I rarely have trouble sleeping.  The times when I have had problems are when I had flutter, particulalry between ablations and my heartbeat was so irregular that I couldn't.  This last month or two hasn't been good either. Hopefully it'll get better soon.

Sleep

by MinimeJer05 - 2021-09-12 09:46:52

@AgentX86

that's so bizzare, why would someone want to troll a pacemakers forum? That seems kinda low. 
 

And it sounds like you've been on quite the ride. I hope things are turning around for you and getting better. It sounds like so much of this stuff requires a lot of patience and faith. It's hard to sometimes forget that (like you said) a lot of this stuff is really just a guessing game and a flurry of pills or prescriptions. 
 

as for the sleep -- yesterday and today is really showing that to be true. My first few days home were slept on the couch because I needed to be elevated. I've since moved to the bed since my arm isn't as sore and while I still am not sleeping the best, I'm definitely getting more solid sleep when I do manage to doze off. 
 

im also trying to be open to daytime naps while it's the weekend. I'm not normally a napped, but I can tell my body needs it. 
 

I'm very curious to see how this next week goes as I feel significantly better at this exact moment, but don't know if that feeling (and confidence) will go away as I start to leave the house more and "test" these vision spells. I figured I'd start slow by having the wife drive to stores for us to run errands and then try to be normal again and visit with friends and family before I even consider driving again. 
 

you'd think if I don't experience issues while my wife is driving I wouldn't experience them on my own? But I guess it's a whole other mental headspace being a passenger vs driver?

time will tell!

I am looking forward to checking out the rest of the forums and not being terrified by all of the intro posts or troubled posts. I'm looking forward to the "life is normal with a pacemaker" threads. 

Trolls

by AgentX86 - 2021-09-12 22:16:27

Some people have nothing to do but waste others' time, or  worse.

Yes, I've had a lot of problems but I don't think I've ever been in better shape in my life.  I'm retiring in a few weeks and ready to really do what I want to do, rather than my boss (though I've had a charmed career too). These issues pretty much roll of my back. Recovery is a pain (literally) but my cars have to go in the shop at times too.  ;-)  It's been harder on my wife than me.

If you're having any problems with your vision or anything like pre-syncope DO NOT DRIVE! The life you save may be yours, your wife's, or some kid walking down the road. After my siezure, I couldn't drive for six months.  Right now, I'm two months into, probably, a three month driving ban. PITA but you do what you have to do.  It's a good thing I have a better half.

Remember, it's mostly people who have had problems come here.  Those who have no problems tend to just get on with their lives and think of their pacemaker about as often as their little toe. You know it's there after you slam it into the bedpost but mostly just forget about it.  Don't think the people here are normal.  ;-)

Driving

by MinimeJer05 - 2021-09-12 22:46:28

@AgentX86

congrats on the retirement and the good health. I am very happy for you and glad to hear you tell your story. I wish you nothing but continued good health. 
 

as for the vision, I definitely wasn't going to even try until after I visit my cardiologist and explain that I've had 2 brief spells while recovering. It's so weird, because my primary and the people in ER all don't seem to be worried about the driving at all and I just assumed the second I mentioned it they'd like "ban" or "void" my license. 
 

I work in IT and usually have the chance to work remote a few days a week and my boss has been very supportive, telling me to basically just work remote until October. 
 

but I'm just worried I won't have anymore spells until I see my cardiologist and that they're just going to chalk it up to surgery or "nerves", which I guess I don't know if I can argue or not? I've never had this kind of surgery or anxiety or vision spells until this past week. 
 

I just find it very odd that the very thing that brought me into the ER for a pacemaker is something I've experienced (to a much more mild degree) days later. 
 

is it in my head? Is it my heart? Is it my vision? I really don't know. I just hope some follow up happens and not the same "shrug of the shoulders" that my primary gave me. The second she heard vision spells she was basically like "yeah, cardiologist is gonna have to look at that, have a good day"

must remain calm though and try to keep the spirits and the good vibes intact. 
 

Jer

still fresh, eh?

by chrysotile - 2021-09-15 01:56:35

oof, yea at just over a week out you'll still be hurtin a bit. haven't had any odd visual phenomena that i'd attribute to the pm; i get migraines so those auras are nothing new and there were the two bouts of vague lightheadedness back before i got the pm but nothing else.

im a good 3 months post-op and the worst of it was the first week or two. Doc gave the ok to drive a week later but held off for three bc i could feel every bump in the road. hurt to do anything with my left arm above the elbow, skip ahead to today i finished installing the hard fuel lines in my galaxie. a little discomfort with the lamp on my chest while im on the crawler, some pectoral exertional twinges, nm else.

still blows you had a lead go on you, and that soon. i know of someone down in fl who was a year short of their third implant replacement surgery date when a lead broke. they're good now, but def an unpleasant sounding experience.

Ban or void

by AgentX86 - 2021-09-15 18:53:28

After my seizure my neurologist said that he wouldn't have my license pulled as long as I didn't drive for six months.  My wife was there, so...  I also know what the consequences would be if I even had a small accident.  I'd be sued for everything I'm worth because I knew of the problem and drove against the directions of my doctor.  It's not worth that risk either. 

Your problem could easily be an arrythmia that isn't fixed by the PM (most aren't).  An interrogation may reveal the cause or they may want to fit you with a Holter monitor for a few days.  That would pretty much rule out the heart as the cause.