Sudden dizziness

Hi @hopenr . HCM (and HoCM) symptoms are super frustrating especially when they show up right out of the blue. In my pre-Camzyos days I would get dizzy any time I "exercised" - strolling a whole block on flat, even ground, bending down to tie my shoes, trying to go up a flight of stairs. I was lucky that I never experienced that particular symptoms while just sitting around. The Mayo website (https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198) doesn't explicitly list dizziness but several other credible websites do mention dizziness or lightheadedness. Do a google search for "HCM symptoms" and check out the ones for Cleveland Clinic, Penn Medicine, British Heart Foundation, Stanford Medicine, just to name a few. Yes, it looks like it's more common to happen during or after exertion, but there's lots of people on these HCM discussion groups who will have experiences similar to yours. Hope it settles down for you, or that you can get it sorted out with some kind of treatment. Good luck!

I never had the dizzyness sitting there just extremely light headed after a work out or sometimes at the beginning of a work out i would feel light headed like i was going to faint, it got to the point i would not work out if i felt it come on.
The last two years my bike riding went feom 1200-1600 miles to less than 400
This video kind of pissed me off because i had been telling my doctors over the last 6+ years these symptoms and they kept brushing it off like it was my age or allergies or exercises induced asthma! It wasnt until i had two back to back heart failures that they found out i had LVTO, at that point i went to the mayo
HCM with severe LVOTO
Gradient resting 48mmHg gradient proviked 122mmHg

Yes, I have similar symptoms at times especially if the barometric pressure is low, the weather is humid, I bend over (while sitting) to tie my shoes, my anemia (yep it's like my kid now) is acting up.

I am a HOCM patient that had an alcohol septal ablation. I have the normal chest pains and shortness of breath. Now I've also been experiencing periodic light headed & dizzy episodes. Sometimes it even affects my vision. These episodes can occur even when I'm laying down. My Primary Dr scheduled a brain MRI and the results indicated that I have been experiencing chronic infarcts of the brain tissue damage caused by long term lack of blood flow. These are also known as cerebial infarction or Ischemic Strokes. My Primary Dr sent my brain MRI to the Mayo Clinic and I now have an appointment with a Neurologist.

Before a septal myectomy, I experienced dizziness when rising from sitting or bending down when gardening. After surgery, dizziness from that kind of movement has not been an issue. BUT, within a couple of weeks after surgery, I experienced intense dizziness with some vertigo, I complained quite a bit, no one could figure it out. About 2.5 months after surgery, I had a syncope episode. Wore a heart monitor for a month, pressed a button each time I was dizzy. After the monitor was sent to be analyzed, had another syncope. It was discovered that I was having arrhythmias. Now, my buddy is my pacemaker/defibrillator. Looking back on it, I sincerely wish I was fitted with a heart monitor when the post surgery dizziness began. Would have saved me two hospitalizations. People can suggest a heart monitor to see if heart rhythm is a cause of their dizziness.

I am not a doctor and have no idea if I can help - but I have noticed 2 things: I often get light-headed when there is any change in my meds which then goes away in a day or two. Of course, this is not dizziness to the degree you describe but perhaps good to be aware of. Secondly, hydration helps with dizziness. Several times in my life, when having dizziness spells, just increasing hydration helps - you still need to track down the source but helping yourself is still important. Also - from reading the posts on this site for several months, it is surely the case that everyone's HCM and HOCM symptoms are different. Heart anatomy is extremely complex and, while each of us may have the "same thing" - each of our anatomy still does differ. Track it down and do your best to feel better as well. It is tough to learn that managing symptoms and figuring out what the disease is are two different but inter-related things but if you can get yourself to work on both tracks, it can be helpful. Good luck - dizziness is such a problematic symptom.

Hi @hopenr,
I've been reading some of the posts you got and all of them are so good. If I may add my two cents (which won't buy much these days!) I was just seen at the Mayo Clinic a few months ago for cardiac clearance before knee surgery. I was experiencing dizziness by bending to tie my shoes. Occasionally doing routine tasks...and several times just sitting or even lying in bed. A few times this 'vertigo' sensation woke me up. I first thought about middle ear issues, as that can cause dizziness outside of HOCM or HCM.
Guess what? That is exactly what Dr. Ommen told me he thought when he heard about the room spinning, vertigo symptoms I described. As for the shoe tying feat of athleticism, he told me to stand up slower, drink more water and see if things changed.
I can report the vertigo business went away shortly after my visit. I confess I did not drink more water than I normally do...which is not impressive or worthy of bragging about. Maybe a little, but nothing worthy of praise.
Being dizzy when you are just sitting can be a sign of something else too, like @walkinggirl mentioned, so I would bring this up to your doctor. Because like @joycehocm said...we aren't doctors!

Hydration is definitely important! For many years, I have been drinking 48-64 ounces of water a day, as "prescribed" by my doctors. I carry a 32 oz reusable container around and fill it 2x a day to ensure that the water is consumed. Sip often and hydration is accomplished. Other foods, juicy apple or orange, and drinks enhance the volume of water, too.

Sadly, none of my doctors will let me count coffee as part of my water intake. The fact that is is more than 99% water by weight seems not to convince them at all. 🙂 Seriously though, when I was first diagnose with HCM, I was told to increase my water intake significantly; it would help with the HCM overall but would also help with the specific symptoms including dizziness. Occasionally I'm even good at that, but when I'm not, I can feel the difference - not just the HCM, but general well-being. Maybe doctors actually know what they are talking about!

Even when i was in the Navy back in the 80’s and 90’s in the gulf war they told us to limit coffee and drink more water.
My cardiologist has said with obstructive HCM coffee is not helpful because it dilates and dilated veins exasperates the blood trying to leave the heart!
Hope this helps