Rich - thank you VERY much for sharing that. I can surely understand why you wouldn’t even want to think about how you used to feel. I can relate 100%. I have all the symptoms that you listed, except for such significant valsalva induced dizziness. I am so incredibly sick from this. I, too, have days when I feel like I am dying. I’ve had this for close to two years and tried several meds. However, I only got up to a therapeutic dose on Verapamil and stayed on it for several months. You give me hope that someone as sick as me can get better with the correct med. thanks again for sharing. I appreciate you posting even though you are mostly better. I keep on trying to remind myself that there are probably many people out there better; however, they are not posting. So, I do appreciate your posts.
Thanks for sharing your symptoms Rich! I have all the same symptoms too.
We’re going to get better Lisa, I know it!
Lisa what meds have you tried besides verapamil?
Hey Rich,
Did you ever feel like your eyes were moving but they weren’t? I get this all the time. It feels like my eyes or kind of bobbing up and down or moving and I asked my husband if they are and he said no.
Thanks for sharing what you went through. I know it must be so hard to remember the hell that MAV creates (I have all of your symptoms, except for the valsava induced dizziness), but it really does bring hope to me and others that we can get better and live a normal life again. What did you do the first time you realized that you were getting better and your symptoms were lessening? I think about those days all the time. I told my husband that I was going to run around outside and scream that “The ground is flat!”. I’m sure my neighbors will think I am crazy but I don’t care. I know I am going to cry everyday with joy once I start getting better and I am never taking life for granted again. I told my husband it will be such a joy to do anything, walk to get the mail, vacuum, etc. when I fell normal again. What a joy it will be to walk to take out the trash without feeling like the ground is bouncing or feeling like I’m walking on a ship in a storm! I can’t wait for those days! 