dizziness/vision symptoms

[Bob in Texas]

Hi,
I am been searching the forums and was wondering if anyone has had problems with their vision during a SOB, dizziness and palputation episode? I am under the care of a HCM Center. It appears to occur under extertion and I get the feeling of double vision and effects my pheriphial vision. This happened about a week ago, I almost went to the ER becuse I got really scared. My HCM doctor was informed and is very concerned as I have had three episodes. Two were before my visit to a HCM Center and and one after I had an ICD and was placed on numerous medications. I am wondering if this could be caused by my severe scarring. Also I am confused on when we should go to a ER I have a ICD, so that should be my insurance policy correct? This disease throws alot of curve balls and nothing can be compared to the norm.

Thanks,

Bob

[mbcube]

Bob - Sorry your having these symptoms.
A couple of questions - Did it happen in both eyes or more in one?
Did it last under 20 minutes and went away just as fast as it came on?

[Bob in Texas]

It happened while I was walking my dogs in the evening at the local park. It has always affected both eyes and goes in conjunction with an epiisode of SOB, Dizziness, SOB, and some exertion. The last time it lasted the longest about two minutes for me to get my composure my wife had to take a hold of the dogs. I remember the palpuataions on this one for sure. I was about to go to the ER but just recently returned from Tuft's where they implanted a ICD/pacer and put me on several medications. I figured I would go there and it would be a waste of time after all my recent treatment I received. at Tuft's.

[gfox42]

Bob,
Sorry to hear about this. I once had an experience that may be like this, before I was diagnosed with HCM -- under really severe exertion (trying to ride my bike up a very steep, very long incline) I had a dramatic narrowing of my field of vision. Got off my bike, put my head down, and waited for things to return to normal, then walked the rest of the way. Slowly. I can't comment on whether scarring itself can cause this problem, but it seems clear to me that an inadequate blood supply to the brain can.

I'd talk to your HCM specialist (Dr. Maron?) about this.

Gordon

[Bob in Texas]

Thanks Gordon,

I informed Dr. Maron the next day since he told me these are the types of episodes he needs to be aware of ASAP. He increased my medications. Just wanted support out there on if this could be associated with HCM in anyway. My gut feeling is definetly. Due to the exertion and palputations, I am sure it is. I must admit when this type of episode occurs I get scared, very scared, I always stop what I am doing and rest and hope things go back to normal.

Bob







Bob,
Sorry to hear about this. I once had an experience that may be like this, before I was diagnosed with HCM -- under really severe exertion (trying to ride my bike up a very steep, very long incline) I had a dramatic narrowing of my field of vision. Got off my bike, put my head down, and waited for things to return to normal, then walked the rest of the way. Slowly. I can't comment on whether scarring itself can cause this problem, but it seems clear to me that an inadequate blood supply to the brain can.

I'd talk to your HCM specialist (Dr. Maron?) about this.

Gordon

[mbcube]

Bob - The reason I ask my questions as I was having some similar issues a long time ago & except for the palps (mine happened at work). Turns out it was an optical migraine, which I never had before. When I reported it here, many others had them as well.
I just had another one yesterday & only one eye was affected (last time both) and instead of a kaleidoscope kind of effect, it was more grey/grainy.
Now that I know about it, I'm much more relaxed, but if this is what happened to you I can understand the palps and increase SOB as it is a very strange thing to go through (no pain, just a sort of psychedelic visual /partial blindness).
Your smart to contact your HCM expert in this and I'm only relating mine as it is a possibility. I think the meds have something to do with bringing them on, though thats just a guess. I never had anything like them until I started on BetaBlockers.

[Bob in Texas]

Marc,

Thanks for the input. Just throwing it out there for comments. My first episode started right before I was diagnosed with HCM and I was not on meds. That is why I suspect it is related to HCM symptoms. This last episode lasted longer and with the combined dizziness I had to sit on a park bench for several minutes. What kills me is six months ago I was running 5 miles a day and now I have to stiop walking the dogs sometimes due to my symptoms. Hopefully, things will get better since surgery is no longer an option for me.


Bob

[Pam Alexson]

The fact that doctor Maron is quite concerned and needs to hear about them denotes concern for the heart relation.

I get a similar when I feel like I am going to pass out and had one a few nights ago. There was and usually is a flickering and a narrowing of my vision and also I am very aware when I get them of a tingling, prickly sensation around my eyes, lips and face. With this episode I was able to avert the loss of consciousness and found additionally I began to sweat a cold, cold sweat... a lot of praying accompanied this one for me as I was alone and without my phone and really could not have gotten safely to it. I began to feel very ill right before it happened and was alone in the house and in my bathroom.
It has been some time since such an advanced episode came upon me and did not resolve quickly.

When this happens...Be very careful and ALWAYS stop what you are doing.. STOP the activity immediately and get to a safe position until it stops or help arrives. If it continues even when you have done that get to an emergency care facility ASAP even if that means you called 911.

DO NOT DISMISS or diminish these episodes. Report all of them to Dr Maron.

[Eileen2345]

Bob,
I have had similar experiences with my vision like that too with palpatations. Many of the times though I see a white-out. But I do remember one episode when I was standing near the closet, heart started fluttering and I had total tunnel vision, I put my hands on the wall and slid down until it stopped. (I do a lot of talking to Jesus.)

Marc, I sometimes get optical migraines, oh I hate those. Anyway, for me, my vision is disrupted for at least 20 minutes while I wait for the flashing to spread out and end (then the headache begins).


Hugs,
Eve

[Linda]

"during a SOB, dizziness and palputation episode"

Bob - the fact that this happens to you during the symptoms you describe is prob the concerning thing to Dr Maron - Pam said it all in her post, ending with her "DO NOT DISMISS or diminish these episodes".

I hope you get answers soon. Best wishes - Linda

[Bob in Texas]

Thanks to all....I remember when I had the first above episode and my local cardiolologist asked me what did it feel like? Without hesitation I stated "Like I need to go to church first thing in the morning" ....gotta love it......


Bob

[THW]

Bob,
I agree that it seems HCM-related. I'm glad you're stopping your activity immediately when it comes on. I don't really have more to add except to say that I'm thinking of you. You've been through and are going through alot since your recent diagnosis.

Let us know how you're doing.
Theresa

[Laoshur]

One possibility that may also be HCM related is an extreme drop in blood pressure. I have had episodes in the past where my vision faded and narrowed and was at least sometimes able to relate this to very severe BP drops.

Rhoda

[Bruce42]

I have ocular migraines, and I've also had one vision episode similar to yours, and in my experience they're very different things.

My ocular migraines are either random or triggered by bright glares. They involve seeing bright colors and auras, and having a sort of reverse tunnel vision, where my peripheral vision is OK, but everything in the middle is kind of dark and hard to focus. I have a pill I take at onset (frova 2.5 mg), and they go away in about half an hour to an hour.

What you describe sounds like what happened right before my one fainting episode I ever had. It was when I tried to do too much on my third day out of the hospital after my myectomy--my heart raced a little, it started with double vision, then dark peripheral vision, then BAM--all the vision sort of collapsed toward the center, and I thought, "this is it--here I go." I collapsed into a pile of lawn chairs (I was in a five and dime store), squeaked "help!," and some nice people helped me. I headed to the ER, then back to Cleveland, and took it easier after that.

The fact that this is correlated with SOB and palpitations suggests it's very much HCM related, and exactly the thing your doctor needs to know. Keep following his and everyone here's advice, and phone this stuff in pronto! Or if you really feel bad, get ER care. Better safe than sorry.