I was curious how many of you have what I experience. I can constantly feel heartbeat. I mean, If I’m distracted doing things then I’m not paying attention to it, but anytime I want, I can feel my heart beat. (It’s not beating fast or fluttering.) I’m wondering if this is a common symptom with MAV.
Brian
I thought I was the only one! Haven’t seen it mentioned before.
When I first started having dizzy spells, I went to my primary care doc. When I mentioned this symptom, he did an EKG in his office (normal, of course) and since my first bad dizzy spell also included a tunnel vision aura - which to me was a signal that I was about to pass out (I didn’t recognize it as aura at the time) - he sent me for an echo stress test! They told me to tell them if I felt at all dizzy when I was on the treadmill - well, I was going along for what seemed like about 10 minutes when I felt some mild dizziness come on so I told them. I guess that’s what triggered the holter monitor that I had to wear for the next 24 hours.
Well, my heart had a couple extra beats here and there but they said that wasn’t too unusual at my age so it was nothing that required treatment or follow up.
I thought being aware of my heartbeat was bizarre. It wasn’t a sensation of palpitations because I understood that to mean your heart was racing - it wasn’t anything like that, I just started to be aware of my heartbeat (it wasn’t beating fast) and I hadn’t been aware of it before.
It took another bad dizzy spell/tunnel vision event and subsequent feeling too exhausted to go to work the next day that got me to go to urgent care. I got a CT scan (normal) and fortunately, a referral to the neurotologist who diagnosed me. Then I was on my way - now that I’m on Topamax, I no longer have the awareness of my heartbeat.
But Brian, you’re not the only one!
Hi Brian,
Yes, I have this too. I could always tell what my heartrate was, without needing to feel my pulse, as I can just tell when my heart is beating. I’m not sure this is related to my MAV.
I also have something called pulsatile oscillopsia, which means my vision flickers up and down slightly with my heartbeat. I don’t notice it all that much, although the eye thing is much more noticeable when I am tired, or during a migraine. But this definitely developed with MAV/BPPV so I think it must be related to either inner ear damage or migraine.
I used to be able to hear/feel my heartbeat, but this was years before any MAV symptoms. I had always assumed it had to do with being quiet, and relatively sensitive to my body. This was also the time when I used to be able to do a breath meditation where I’d send the breath’s thoracic expansion along my back so I felt each vertebra, in order. Ah, well.
— Begin quote from “DizzyBAT”
I was curious how many of you have what I experience. I can constantly feel heartbeat. I mean, If I’m distracted doing things then I’m not paying attention to it, but anytime I want, I can feel my heart beat. (It’s not beating fast or fluttering.) I’m wondering if this is a common symptom with MAV.
Brian
— End quote
I too can feel my heart beat some of the time. THink it must be something to do with MAV. Have only been suffering 3 weeks and thats when it started.
I have had bad anxiety for almost ten years and have had this awareness of my heart beat the whole time, so for me I don’t think it’s related to my mav, but the mav has worsened my anxiety…
Thanks for all your relies! The most apparent conclusion, however, from the limited responses (only 5), would be that awareness of heart beat is NOT a common symptom of MAV. (Also about half of you said your awareness of pulse is probably unrelated to your MAV.)
Mary Alice, I find it interesting that Topamx took it away. I would try Topamax, but ny neurotologist doesn’t want to put me on it because it’s too sedating/dulling (she calls it “Dopamax”). What is your experience on it?
Thanks again,
Brian
Brian -
I lost some weight that I needed to lose when I first got on it (though recently, due to some extra stress in my life, I found some of it creeping back on), and it helped me quit the Pepsi habit I’d been wanting to shake for years (it has made fizzy drinks taste “off” though I know it doesn’t do that to everyone). So not all side effects are necessarily bad.
But the “Dopamax” thing has been true for me - less now than at the beginning, but I still have some occasional word finding difficulty, mainly with regard to words I use infrequently. If I did public speaking or acting for a living, this could be a real deal breaker. I find I don’t think as fast as I used to in general, but if I get fired up about something (a real interesting discussion or something I feel strongly about) I think I’m just about as sharp as I was before.
Other side effects in the beginning were constipation (but I’m prone to that - it just made my tendency worse), tingling in my fingertips and sometimes my lips (I hardly ever get that now), and ghostly visual trails that only happened in the morning when I first woke up when the light was kind of dim.
The big problems came when I told my doc that I had stopped having the daily wobbliness, major dizzy spells, and tunnel vision auras - all good news - but was having some breakthrough mild episodes of dizziness and some mild to moderate headaches; he suggested I work my way up from the previous target of 100 mg to 200 mg. Not only did my husband think I was mentally more dull (I know I was worse, but he thinks I was WAY worse) - I could no longer have orgasms at 200 mg. I am willing to deal with breakthrough mild episodes of dizziness and some headaches! I’m now at 150 mg - didn’t have to go all the way back down to 100 to fix the main problem. I will say that at 200 mg I had fabulous symptom control, but I wasn’t willing to pay that price. I have pretty darn good symptom control now.
By the way - I don’t know if the awareness of heartbeat is in any way related to tinnitus, but I also had some strange percussive thumping episodes that also went away with Topamax; these were much more pronounced than the subtle tinnitus I have still (kind of like a distant power line buzz/whine sound). These episodes were short, loud, and in one ear only; they even started slow and increased in speed (really bizarre), and it felt more like a spasm in my eardrum and not at all like a pulse. I thought they might be a kind of tinnitus, but maybe they were a kind of aura.
As with all things, we weigh the costs and benefits. I was having such severe dizzy spells with tunnel vision auras that I was afraid I might have to give up driving, so trying Topamax even with all its possible side effects was a no-brainer for me.