Update

Hello all,

I just want to reach out and thank everyone again for the support and help that I have recieved. The people of this community are so intelligent and caring and have made this whole journey that much easier to manage.

Sadly, I am not feeling any better. My vision/motion issues seem to come and go at random (morning, afternoon, evening, sitting, standing, driving, etc). Sometimes they last for a few seconds/minutes, and sometimes they hang around for 3-5 hours.

I've been able to work from home and avoid driving myself, but I am pretty limited on doing much of anything as going to the store or to a restaurant can either be a normal experience or a constant feeling of needing to sit down or I may possibly puke.

I saw my primary yesterday morning and the first order of business was to "test" for vertigo (some movements and monitoring of the eyes) and everything seemed fine. She put in for another referral to neurology (I've already had a brain CT and MRI, but she says there are other things they can study/look at). 

We also upped my dosage of my amlodipine from 2.5mg a day to 5mg. She stated that my blood pressure is a little higher than normal and never consistently in that 120/80 range, so it  could be the potential fix, but she didn't seem too confident. I am supposed to reach out after a few days to a week to see if the increased dosage made things better/worse/the same. 

Trying to remain positive and focus on things that I can control. Going to adjust my workouts to at-home exercises and maybe shorter/closer walks with multiple laps -- I miss going to the gym so much, but just don't feel comfortable or confident yet.

I also have a sleep study scheduled for 2 weeks as the at-home sleep study revealed that I have moderate-to-severe sleep apnea. This might not be effecting my vision, but obviously sleep apnea is bad on the heart and blood pressure, so i'm sure in time, it will help to get it under control. I assume I will get my device/machine after this second study to determine what sizes/types I need.

Otherwise, I am going to keep "pushing" myself a little bit more each day to see if I can find any sort of patterns or triggers. It bothers me not having answers, but it is comforting knowing that we are still trying things. I don't think neurology will find anything, but I could be wrong. 

I do have an appt on Dec 16th for a pacemaker check and then to see my main cardiologist, so I hope to have updated news to report back on or at least another set of eyes to look at the problems that I am experiencing (that were never present before the PM install in Sept). I'm not saying any or all of this is related, but it could possibly be linked together at some point.

We shall see. 

Take care everyone

Jer


7 Comments

I am still confident it will get better for you Jer

by Gemita - 2021-12-03 15:04:31

I am sorry you are not improving despite all your efforts to overcome your troublesome symptoms.  I am happy we are helping by being here whenever you want to chat, but you are really doing all the hard work yourself.  Please don’t get despondent.  We will slowly break down the fog, have no doubt about that.

I note vertigo has been ruled out and other checks have been made and I am happy you have been referred back to a neurologist who is best placed to order a range of specialist tests to look for other causes for your continuing symptoms.

It is good that you are addressing your sleep apnea since left untreated it can quickly lead to worsening electrical problems.  It is a very strong trigger for arrhythmias, including AFib.  Having a good night’s sleep will help with all your symptoms.  Consider asking your cardiologist for longer term monitoring too to see whether you have developed an intermittent arrhythmia as a cause for some of your symptoms.  If 5 mg Amlodipine doesn’t help, you could ask to try another calcium channel blocker or maybe switch to a beta blocker?  I presume you stopped the anxiety med without noticeable improvement?  A beta blocker would help with any anxiety you still may have, as well as treating your slightly raised blood pressure.

I wonder if it would be worth discussing further with neurology/cardiology whether your continuing visual/balance disturbances and other symptoms could be related to your heart procedures, particularly to your aortic valve replacement, despite all your normal investigations to date?  The occurrence of visual disturbances following surgery involving the heart is not uncommon (please see link below) so you are definitely not alone.  Unrelated to your medical history, but after an Atrial Fibrillation ablation for example, some patients report dizziness and visual disturbances, including migraines due to atrial septal puncture during the ablation procedure.  I hope your neurologist/cardiologist will be able to provide a diagnosis and treatment for your symptoms if indeed these turn out to be related to your earlier heart procedure.

Looking back over your history it seems you were having visual disturbances and other symptoms before your pacemaker implant and you confirmed this yourself in one of your posts when you said you passed out at work, they scheduled an echo and as you drove to your appointment, your vision got foggy and a pacemaker was recommended.  I understand you were hoping that the pacemaker would completely fix your problems which hasn't so far happened.  I note at the time they also saw left bundle branch block which you say was from the previous surgery. 

I really hope you get some answers on the 16th December Jer to help you to move forward with confidence.  

https://www.heart-valve-surgery.com/heart-surgery-blog/2009/06/22/vertigo-vision-problems-headaches/

 

Update

by AgentX86 - 2021-12-03 15:10:57

Sorry that your pacemaker didn't make all the difference. You needed it but obviously it wasn't the entire story .

A higher than normal blood pressure wouldn't cause your symptoms. I've gone way above normal, well into stroke territory without anything like your symptoms. However, low blood pressure sure can. A possibility is "orthostatic hypotension" or low blood pressure brought on by your body position, often as you stand, though the trigger can be pretty much any body position.

vertigo symptom causes

by islandgirl - 2021-12-03 22:50:47

I saw an ear/nose/throat dr, referred to by my primary.  I occasionally get vertigo symptoms.  I found out from him neck issues can also cause vertigo-type symptoms.  

Worth a try and maybe the neurologist will find out something to help you.

Just thinking about it.

by Gotrhythm - 2021-12-04 12:31:51

Meditating on what islandgirl comments, for what it's worth, here's what came to me.

Your symptoms are saying, "I'm out of balance."

Therefore one direction to go in would be therapies that focus on restoring balance like some body balancing deep tissue massage modalities, chiropractic, Feldenkreis.

Me, I'd start with chiropractic. If it helps at all, it will require the least time and money committment.

As for the connection to your pacemaker. I doubt if the pacemaker itself is the culprit, but who knows how your neck or spine might have been twisted momentarily while you were unconscious and being shifted from place to place?

Another possibility could be unconsiously holding your shoulder stiff while you healed from the pacemaker insertion. Stiff shoulder will always transfer to the neck. And stiff shoulder and neck makes the work of maintaining dynamic balance of our body parts harder.

What I'm saying is, the connection you see between getting a pacemaker and having this problem come on could be real, but the cause of the problem isn't the pacemaker. It could be something else that happened at the same time.

Thank You All!

by MinimeJer05 - 2021-12-06 10:10:34

All,

Thank you so much for the comments and assistance. Again, this place is my life-saver when it comes to navigating through the unknown. I want you all to know that I have read your comments and continue to take notes and raise awareness to my medical support team based on the conversations that we have had.

@Gemita I am definitely going to be raising questions to my cardiologist in a few weeks when I see them about the potential of past surgery damaging anything as you mentioned in your post. I will continue to press them if I can't get answers elsewhere to see if there is any sort of connection or not. You are also correct, I stopped the Hydroxyzine and have not noticed any change whatsoever. I noticed that the increase in Amlodipine from 2.5mg to 5mg has definitely not made things worse, but I don't know how much it is helping. I mean, it is lowering my blood pressure (I guess that's the overall goal, right?), but the vision/motion stuff just seems to be less intense, but still present. I don't think this will be my cure, but I think it's helping to some degree.

The lowest BP reading I have gotten was 115/75, but I am still averaging about 120-135/80-90.

@islandgirl and Gotrhythm I am definitely going to start persuing alternative methods. My primary doctor is great, but when I am referred to neurology, it can often take a month before anyone will see me. They already did a brain MRI and CT, so I hope they have other "tricks" up their sleeve.

I will be looking into scheduling a chiropractic visit as I have never done this and it sounds like a quick and easy try.

Meanwhile, I found a NeuroVisual eye clinic that specializes in BVD, vertigo, visual therapy, etc. I left them a voicemail in hopes that they will get back to me. I figured at this point I can be proactive and start reaching out to all of these specialists, as I know my primary can only go so far. She's a great doctor and will refer me if needed, but it sounds like after my past visit that she too was at a loss for words on what could the culprit here, especially since I've went through so many tests and labs and have essentially returned with a "clean" bill of health. Not to mention, before the valve replacement, I was the type of person that saw my primary once a year and never had a problem or anything to report or complain about.

One other random note that has me thinking is...about 3 weeks back (before the vision/motion spells started acting up again) whenever I was lying down I noticed my right ear would "clog". I scheduled an appt with my primary as I have had to get the wax removed from my years in the past (every 5 years or so). They checked my ears, noticed blockage, removed the wax and I felt great and was on my way. Is it possible that wax removal could have any sort of impact on this? Has anyone gone in for wax removal and then a week or two later started experiencing vertigo-like symtoms? Might be a shot in the dark, but I will be asking that question later this week when I touch base with my doctor.

Take care everyone

Jer

 

More Tests!

by MinimeJer05 - 2021-12-08 16:26:51

Hello all,

Just checking back in as I've finally been able to start lining up appts!

I've seen a chiropractor twice now and they found some misalignment in my neck and said that those nerves can effect vision/motion/balance. No promise to fix things completely, but it shouldn't hurt anything. I am on a 6 week program that involves daily adjustments, some neck pressure therapy and some interesting neck pillow that also comes with exercises. Apparently my spine is curving incorrectly in my neck and even starting to push forward onto some nerve bundle. 
 

I'm seeing a NeuroVisual eye specialist tomorrow to take another look at my eyes. 
 

Dec 23rd is my appt with neurology and my primary doctor is also in the process of scheduling vestibular therapy, which is meant to further investigate vertigo and help fix it, if that's the issue. 
 

I don't feel like things are any better, but I do feel good knowing that I have appts coming up and things to "look forward" to. 
 

Jer

Good progress Jer

by Gemita - 2021-12-08 18:56:02

You certainly get on with things out there.  I am still waiting to hear about my MRI.  Cannot believe how quickly you have been able to arrange all of this and before Christmas too.  Yes neck problems can certainly cause instability and if I turn too quickly I can easily lose balance.

Good luck with the NeuroVisual eye specialist tomorrow and with your other appointments and therapies.  You and your doctors are certainly working hard to find a cause for your symptoms.  Really encouraging to hear of your progress.

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