One Step Forward, Two Steps Back?

FWIW

by AgentX86 - 2021-11-22 00:39:24

It sounds like it could be a low BP problem. BP meds would only make things worse.  You should take your BP while you're having the problem.

It may notbe heart related at all. Doctors tend to get tunnel  vision (if all you nave is a hammer, the world looks like a nail). I had something similar but after a fall-down-and-out seizure they started taking my symptoms seriously and sent me to a neurologist. They didn't have a full explanation either but they did have drugs to (mostly) control them.

I'm not saying that you have a neurological problem but don't get tunnel vision.

How I would proceed

by Gemita - 2021-11-22 06:16:56

Jer, firstly I am very sorry you are still having symptoms.  Since you have had extensive tests it is difficult for any of us to know how to help you, but I will try.  Looking at your post, several things stand out.  

I would be concerned to drive with any potential sudden changes to your vision or stability not only for your own safety but for other road users and the general public.  Use this as a strong reason to get to the bottom of your symptoms as quickly as possible.  I would suggest that you stay calm but consider not driving until you have spoken to your general doctor and seen your cardiologist.  

Are you taking Hydroxycine for anxiety or allergy?  It can be associated with heart rhythm disturbances and some of the symptoms you are describing.  It can cause "dryness" and make dehydration more likely particularly with exercise. You were doing so well and I wonder whether you might be able to reduce dosage of Hydroxycine or to try to stop this medication slowly with your general doctor’s agreement and help?   I note you are on beta blocker Metoprolol too and this alone should help with any anxiety.  Perhaps your pacemaker, heart meds and Warfarin are all that you need now to remain well since you were sounding so much better before this recent episode of troublesome symptoms.  

Looking at your blood pressure figures, I see nothing unusual in these, just slightly on the high side but I believe blood pressure can take hours to return to normal following prolonged exercise.  Mine comes down quickly but I usually exercise in short bursts, so as not to trigger worsening rhythm disturbances.  I find it hard to believe that your cardiologist prescribed Amlodipine as “a guess only”.  There is usually an indication for prescribing a calcium channel blocker such as Amlodipine, so perhaps he noticed your blood pressure was slightly on the high side in general. 

I am a great believer in long term/frequent monitoring to capture any sudden changes in blood pressure, heart rate and heart rhythm.  A sudden change in blood pressure or heart rate either upwards or downwards could well indicate a problem with heart rhythm Jer, but it can be a long, frustrating process to capture any arrhythmia.  Perhaps a treadmill test would be helpful, although you mention your symptoms only occurred “after” a period of exercise, while on the home stretch, so treadmill testing may need to be of a similar duration to catch the problem. 

No-one with electrical disturbances requiring a pacemaker or with structural/ischaemic heart disease is going to feel as well as they might without any of these conditions, but we can still reach a good level of fitness and wellness.  I see you have a mechanical heart valve and are on long term Warfarin to protect you against blood clots.  I presume your blood levels of Warfarin are stable and are being closely monitored by you or your doctor?  Not an easy med to manage and I expect you are closely monitoring foods which could affect Warfarin blood levels as well?

I appreciate you experienced symptoms straight after pacemaker implant, therefore you believe “it must be the pacemaker still causing your symptoms”?  I had symptoms for months following my implant.  They were mainly due in my case to increased arrhythmias until my heart settled from the trauma of implant, from the trauma of being paced and from the changes to my medication. I was found to need fewer meds after my pacemaker.  

Is it possible you need more meds (or less) or pacemaker changes?  I simply do not know but I would keep pushing for answers for your symptoms and "longer term monitoring” (7-10 days, or more if required) of blood pressure, heart rate and heart rhythm to help discover what the underlying problem might be and what treatment might help.  I am confident your symptoms will settle with time whatever the cause

Good Points

by MinimeJer05 - 2021-11-22 11:29:13

@AgentX86 -- Thank you for sharing and you are absolutely right, I (and my wife) tend to get tunnel vision when I experience anything unusual. Maybe it's just easier for me to understand or accept things if I can "blame" them on something? But that doesn't always mean they are related at all. I do remember reading about your seizure before and appreciate the insight, hopefully I can figure out whatever is happening, whether that means medications and lowering/raising my BP or if things get worse, then maybe it will help point in the right direction? I definitely hope it's nothing neurology-related, because they did do a few brain and eye scans/tests and reassured me everything looked "normal", but I am sure the brain is such a complex thing that is can be hard to look for something if it's not obvious or coming with worsening symptoms?

@Gemita -- as always, you have a way with words that are so comforting, reassuring and informative. Thank you for the thoughtful and well-constructed comment. I will be taking these notes with me and using your advice to hopefully get a better control on what is going on.

To answer your questions...

I am taking Hydroxyzine for anxiety. I was initially having issues driving after my PM implant because of the vision/motion spells. Those went away, but I was still very tense and stressed behind the wheel. They actually mentioned having me slowly stop taking them (oddly enough, I was going to start skipping my morning dose as of this morning), but now with these things happening...I am not so sure? My general doctor essentially said take as needed from this point on, but I was taking a half a pill in the morning and then a half a pill in the afternoon.

I am still scratching my head on the Amlodpine prescription. It was only prescribed after all of those other heart tests came back fine. I had a few incidents where my in-clinic BP was 145/100, linked with the vision/motion issues and then she said "let's try it, but I doubt it will help much" and it definitely did help. Within 3 days I was feeling like all of the vision/motion stuff was behind me. I started going for walks, driving, running errands, etc.

I did do a treadmill test and everything seemed fine before, during and after the test. Nothing "exciting" found, which led me to believe that exercise was GOOD to go, but like you said, maybe since this happend at the end, that I would need to be monitored for much longer? I believe the treadmill test was 5 mins at max...started out slow and ramped me up rather high in a hurry. Felt GOOD though to feel that exercise burn again.

As for the mechanical valve and Warfarin -- yes, I monitor my INR rather closely. I get checked every 4 weeks and am usually "spot on". My desired INR is 1.5 to 2.5 and I am usually right around 2. Some times 2.1 or 2.1, other times 1.8 or 1.9. I make sure to monitor my vitamin K intake and have honestly given up on drinking any sort of alcohol, because it isn't that desirable to me and easier to manage the meds without it. I've also cut my caffeine intake back significantly -- I mostly drink water and juice, sometimes a glass of milk. I maybe have 1 can of soda a week, if that and it's mostly now just a treat for me. No coffee or energy drinks ever.

How long did it take you for your heart to settle from the PM implant trauma? Interesting that you needed fewer meds after the PM implant. I would LOVE to get off the Hydroxyzine as I feel like it's not doing much (I am still stressed while driving, but I find talking to someone on the phone or listening to soothing music helps), but now I am afraid to change any meds or dosages until I can get this vision stuff under control....unless the Hydroxyzine is only making it worse?

I guess time will tell! 

Thanks again for the responses 

Jer

Just a thought

by Gotrhythm - 2021-11-22 12:49:42

I'm not a doctor, but I do know that not everything is caused by or related to the heart, pacemaker, or bp. After all heart issues won't prevent every other kind of health problem.

When you described your symptoms the first thing I thought of was vertigo or equilibrium issues. Blurred vision can accompany the "motion sickness" feeling. From experience, I can tell you that it can come on out of the blue, between one second and the next.

There are many causes but the source of the problem is the inner ear. In my case the cause is allergies, and taking an antihistimine brings relief. When the problem is so severe that I'm willing to go to bed and sleep it off, I take an over-the-counter Dramamine generic.

Hope this helps.

A Great Thought!

by MinimeJer05 - 2021-11-22 13:29:07

@Gotrhythm -- I appreciate the response and the input. I was doing some light Googling when this was originally happening and definitely thought to myself, some sort of vertigo issues could be the cause.

But nobody (my general doctor or my cardilogist) suggested looking further into it or being concerned with the ears. Is that something that can be tested to find the cause or is it just a trial and error with random meds? 

I very much want to bring this to the attention of my main doctor, but I am always unsure if it's appropriate for me to randomly say "can we check my ears? veritgo, equilibrium, etc?) vs having them suggest it first? 

If my cardilogist continues to say that it doesnt seem to be heart-related, then I would definitely like to expand the focus out onto other things and I think this would be a great thing to rule out.

Thanks!

Jer

We are making progress

by Gemita - 2021-11-22 15:54:03

Jer, firstly I believe you should be reassured from the tests that you have already had done, particularly the MRI brain scan and the trans oesophageal echo to get detailed views of your brain and heart.  Your cardiologist seems to have been very very thorough with your tests.  Of course it could be something completely unrelated to your heart but since your symptoms all started around the time of your pacemaker implant (?and perhaps this was the time when you first needed your Hydroxyzine for anxiety) it is easy to think that one or both of these might somehow be involved in your continuing symptoms.  A pacemaker implant of course is never entirely without risk and some of us will get lingering symptoms from a seemingly simple, successful procedure.  

Just seen Gotrhythm’s valuable comments.   She makes an excellent point.  The only problem I have with this is, I cannot imagine a responsible care team would have rushed into investigations like ordering a brain MRI scan/trans oesophageal echocardiogram without doing some simple basic checks first to rule out more common conditions, but perhaps I am mistaken?  Did you ever consult your general doctor about your symptoms or did you only follow up with your cardiologist?  Yes I would ask your general doctor (not cardiologist) to rule out other conditions for your present symptoms, to hopefully put your mind at rest.

It took me over three months for my heart to settle down after implant.  I already had Atrial Fibrillation, an irregular atrial tachy arrhythmia which caused syncope, instability, chest pain, breathlessness, but on first device check they found evidence of an additional arrhythmia, known as Atrial Flutter, which I initially thought was due to my pacemaker.  This was quickly found to be caused by my anti arrhythmic medication, Flecainide which had suddenly become “pro arrhythmic”.  I was gradually tapered off Flecainide and only took Bisoprolol, a beta blocker (rather like Metoprolol) to control my heart rate.  My recovery was very fast after dropping the Flecainide.  

I later learnt from my EP that my anti arrhythmic med, Flecainide, particularly at high doses, appeared to have had an affect on my pacing capture thresholds/pacing parameters.  I cannot tell you more since I didn’t fully understand at the time how this could have happened, although I do understand now that with my pacemaker, my requirement for medication is lower because my pacemaker is effectively helping control many of my symptoms.

When you see your general doctor for some checks, I would perhaps consider asking whether you could safely drop Hydroxyzine since Metoprolol is sometimes prescribed to help with anxiety as well as for heart rate control and any rhythm disturbances.  By dropping Hydroxyzine you might find out whether this med is part of the problem? Side effects can include visual disturbances (see links below):

https://bnf.nice.org.uk/drug/hydroxyzine-hydrochloride.html

https://www.ema.europa.eu/en/news/new-restrictions-minimise-risks-effects-heart-rhythm-hydroxyzine-containing-medicines

Update

by MinimeJer05 - 2021-12-02 13:58:30

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 this morning and the first order of business was "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. 

Jer