Bad Timing

Hello everyone,

I always seem to have the worst timing when posting an update on my story. I generally like to wait weeks/months of no issues to report back in hopes of not jinxing myself and as a sense of accomplishment to say "hey everyone, I was feeling crappy but now I'm great", but of course, that's not my luck. 
 

The good -- I really do feel a little better with each passing week. I underwent another head MRI and neck MRA to look at blood vessels to see if there was anything "obvious" to explain my random vision/motion spells and nothing was found -- healthy as an oxe. 
 

Had a pacemaker check before and after those scans and happy to report that my pacer is still only jumping in less than 1% of the time (grateful for the backup and happy that it's not getting worse or "working more".) 
 

I've started consistently exercising on my elliptical at home. I'm averaging 30-45 mins a day, feeling good while doing it and getting my heart up to 120-150 BPMs comfortably. 
 

The biggest help for me has been seeing a Vestibular Therapist. The initial appt had me go through quite a few "tests" and she identified several areas where I had difficulties. Mostly things involving my vision going from left to right quickly -- this was exciting for me because for the first time, someone told me that they found something that is giving me problems that shouldn't be. I do these exercises at home daily to the point of having to close my eyes as I could probably push myself to get sick if I tried hard enough. She said to continue doing these and come back every other week for new exercises and tests to see if things are improving. I've only gone twice and while the exercises don't seem to be getting any easier, I can say my vision/motion events are generally trending towards less intense and less frequent. This is one of those therapies that doesn't have an ETA -- some people it takes weeks, others can be months. It's also one where it "gets worse before it gets better" in the sense that I need to keep pushing myself to feel these uncomfortable things, safely and in time, will retrain my body to get back to normal.

Most of the days I feel fine and maybe only notice things when moving my head fast (watching sports on tv requires a little pre-determined effort), but I still do have my days where I get hit with a spell and feel really crappy all day and just can't seem to do much aside from lay or sit down. 
 

I have noticed that ever since I got COVID in December, I get random ringing in my ears that also sometimes ties in with the motion issues. As in, ringing starts and then I notice my vision spell come on. Or if I lay on my right side, my left ear rings. This is mostly just an observation and the ringing usually goes away within a few mins, but it was an interesting note that the docs again contribute to a  issue with my Vestibular system. 
 

But they keep assuring me that my heart and brain are fine and that it's something to do with my Vestibular system. Oddly enough, that helps my anxiety and stress because when I feel a spell coming on, I can just relax and take it in and remind myself that I'm okay, I'm not going to die from this and that it will pass. 
 

I still wonder in the back of my head if there's a connection to the heart -- but I try to not focus on that as it only gives me anxiety and my heart has otherwise behaved normally. 
 

Reason for saying I post at bad times is because this past evening I went to bed rather late (midnight) and was woken up by a nightmare at about 4am. Of course I felt a little anxiety and noticed my heart was elevated. Only this time I couldn't go back to sleep. I've been sitting wide awake for hours. My heart is running kind of high -- sitting on couch is ranging from 90-110bpm while getting up to use the restroom is spiking me from 110-140bpm. This concerns me as my elliptical session earlier today had me feeling great, sweating a ton and working out comfortably at about 145bpm. 
 

Is it normal to experience a very light 1 min walk to bathroom that causes your heart to jump up to 140bpm? 
 

I'd say I don't feel out of breath or any sort of chest pain or tightness. I will say I feel on high alert and unable to return to sleep because I can be sensative to my heart racing as I have a mechanical valve and am very aware of the ticking. 
 

Hopefully it's nothing and just a speed bump on my recovery. My Apple Watch ECGs have been showing sinus rhythm and my blood pressure cuff has been nice and in range of 115-120 over 70-80. Haven't seen a high reading in over a month. Highest reading was this morning during all of this commotion and even that was only 127/82. 

I'm hoping whatever I'm feeling this morning is just a fluke and that my road to recovery continued to trend upwards. It would bring me so much joy to be able to have a full post with no concerns or worries and just great news. 
 

All things considered, I'd say this is still a pretty positive post and I hope that you all are doing great and living your best lives!

Take care

Jer

3 Comments

Yes your post was positive

by Gemita - 2022-02-06 13:56:20

Jer, well daily exercising and getting your heart rate up to 120-150 bpm and feeling comfortable is real progress and I hope you are proud of what you have achieved.

You ask “Is it normal to experience a racing heart with a very light 1 min walk to the bathroom"?   Your heart was already racing before you got up to use the bathroom but yes, as an arrhythmia sufferer, that would not be so unusual.  You mentioned you were awakened by awareness of a raised heart rate.  It would also not be unusual to need to use the bathroom several times during the night with atrial tachy arrhythmia episodes and no doubt that prevented you from sleeping too.

I discovered some years ago that when in Atrial Fibrillation or any other atrial tachy arrhythmia at a rate exceeding say 120 bpm, a powerful hormone called the “atrial natriuretic peptide hormone” in the atria kicks in and acts as a diuretic to lower the blood pressure and regulate the calcium and salt in the body.  Not fun at night though!

I would check your electrolytes if you have started getting palpitations Jer or perhaps check if you need further pacemaker adjustments although I am sure these will settle.

Thank you for posting and giving other members support too when they post.  It is good to have you as a member of the Club.

The "way too early to wakeup" blues

by Persephone - 2022-02-06 19:38:33

I'm fully in with what you're saying -  I get the feeling of heart racing when waking up at night too, tho no afib diagnosis.  Adrenaline and cortisol are factors in all of this as well as the hormone Gemita describes.  It sounds like you're monitoring everything and doing great work to stay fit - so keep at it and stay the course.  Over the long run these are likely just bumps in the road, as you say :)

 

Daily recolibration?

by BOBTHOM - 2022-02-06 21:44:36

I have a Medtronic AICD, it does a recalibration every night around 1:30am.  It used to wake me up and/or if I was awake I would feel my heart rate go up along with a pin prick sensation.  After months of arguing with the doctors I called Medtronic and they told about the recalibration and that it was a "feature" and could be turned off.  Perhaps it's something along those lines?

I also wake up when they do their remote monitoring/download.  They say I shouldn't feel it but in November I wrote in my journal about a difficult night of sleep, tossing and turning, warm sensation around shoulder/upper chest.  Several days later I recieved an email saying I had new test restults.  It was an ICD report.  They had forgotten to tell me about the download they were planning and it didn't appear on any appointment schedule anywhere except in their internal office calendar.   Perhaps it's something along those lines?

Good luck, hope you figure it out!

You know you're wired when...

You can take a lickin’ and keep on tickin’.

Member Quotes

In fact after the final "tweaks" of my pacemaker programming at the one year check up it is working so well that I forget I have it.