Robert Thompson - Heart Valve Journal

My Journal

1973 days ago

Susan Lynn, Bradley Dunn, Adam Collins and 1 other reacted to this

Hello everyone, After my AVR surgery in 2012, I started experiencing more frequent ocular migraines and strange seemingly random woozy spells. I was really ...Read more

Hello everyone, After my AVR surgery in 2012, I started experiencing more frequent ocular migraines and strange seemingly random woozy spells. I was really worried because I thought it was heart related. I told my PCP and cardiologist and they wrote it off as low blood sugar or lack of sleep. A friend of mine is an Airman and drone pilot. I told him about my spells and he very casually said, "Oh yea, digital dizziness.. half the guys in our unit get it from staring down at the computer training simulations." I looked up digital dizziness, which is also referred to as cyber sickness, and it is eerily similar to what I feel and is more prominent among migraine suffers. I am frequently looking down at my phone and watching video for work and play. Just throwing this out there in hopes of relieving someones worry. https://well.blogs.nytimes.com/2015/11/14/feeling-woozy-it-may-be-cyber-sickness/

Feeling Woozy? It May Be Cyber Sickness

https://well.blogs.nytimes.com/2015/11/14/feeling-woozy-it-may-be-cyber-sickness/

A peculiar side effect of screen time is cybersickness, which causes a person to feel woozy from viewing moving digital content.

Susan Lynn Very helpful! Thank you! 🤯

Christi Harrington Good to know. Thanks!

Ajit Kattilaparambil My AVR surgery was in 2016 and changed Tissue valve and ascending aorta along with removal of 2 bloc ... Read more

Ajit Kattilaparambil My AVR surgery was in 2016 and changed Tissue valve and ascending aorta along with removal of 2 blocks. Earlier i had the problem of dizziness but now perfect. Dizziness was not related to the heart.

Robert Thompsonposted an update

1981 days ago

Weird Symptoms Hello Everyone, I'm about 8 years out from my surgery (AVR St. Jude Mechanical valve and Aortic graft). I have very few complaints but, once ...Read more

Weird Symptoms Hello Everyone, I'm about 8 years out from my surgery (AVR St. Jude Mechanical valve and Aortic graft). I have very few complaints but, once in a great while, I run into some weird sensations that confuse me and my docs. Wondering if any mechanical valve vets have encountered similar symptoms. **These do not seem to be very frequent complaints among other AVR forums. I don't want anyone to think these are common issues for AVR recipients** 1) Temporary (15-30 mins) pain in the lower back area a) Less frequently felt in the traps, neck, shoulder, or upper back b) Pain seems to come in waves that are 30 seconds to a few minutes apart c) Internal constricting sensation d) Usually about a 5 but can be up to 8 in pain e) Doc has said its probably musculoskeletal but stretching doesn't make it worse or help 2) Aching sensation from the general left chest area a) Probably the most frequent of my weird sensations b) No rhythm. Not a beating ache c) Very low on the pain scale barely noticeable d) I don't feel it when I exercise, more present when I am still e) Wondering if its my sternal wires.. 3) Temporary "woozy" sensation (strangest and hardest to explain) a) Happens randomly and lasts for about 20-40 minutes b) Disconnected, delayed, foggy feeling c) I don't feel unbalanced but my equilibrium seems affected d) Feels like I took daytime cold medication or had exactly 2 beers (: 4) Visual disturbance a) Very rare b) Dark cloudy spots appearing in the corner of one eye c) Starts pretty small and grows over a few minutes and then reverses d) Completely occluded one eye one time but went away after a few minutes Again, these don't seem to be common sensations after AVR. I don't want to scare anyone with my freak occurrences. At the very least, it may be comforting to know that you're not crazy if you have had a similar experience.

Sommer Russell I'm barely a VET in this, and have only been 7 months out since surgery, but I too had AVR with St. J ... Read more

Sommer Russell I'm barely a VET in this, and have only been 7 months out since surgery, but I too had AVR with St. Jude Mechanical and aneurysm repair. I am not sure that I can answer much about 1 and 2 because I have pain still from the procedure, especially when I sleep funny or do too much lifting. I do feel that I can share about 3 and 4. And, lots of people tend to have problems that you explained after OHS. It is ocular migraines that sometimes happen after OHS. The aura sometimes has a headache to follow and sometimes it doesn't. My aura's are bright flashy lights, but sounds as if your aura's are the dark spots. I think the woozy feeling could be a type of migraine as well- the vertigo type. I have read several posts on here of people experiencing the same exact thing, and as far as googling says- people experience, but the surgeon's never think it has anything to do with surgery, though many people didn't experience anything like this prior to surgery! Have you ever had a migraine?

Barbara Wood I agree with Sommer, 3&4 sound like occular migraine. Number 2 sounds like the weird very low level ... Read more

Barbara Wood I agree with Sommer, 3&4 sound like occular migraine. Number 2 sounds like the weird very low level ache/sensation that I occasionally get where I had breast cancer surgery 9 years ago - I'm told it is a scar tissue/necrosis thing...best wishes as you continue to heal:)

Robert Thompson Thanks for the replies Sommer and Barbara.

I have had ocular migraines all my life. They are exactl ... Read more

Robert Thompson Thanks for the replies Sommer and Barbara.

I have had ocular migraines all my life. They are exactly as you described them. A flashy aura that starts small and grow over time and is sometimes followed by a headache. I actually found an artist that draws ocular migraines into her paintings. I will upload a pic and tag you.

The thing is.. I always see ocular migraines in both eyes. If I close one eye, I still see the edge of the flashy aura. When I see the darker spots, its only in eye at a time. Once or twice after surgery, the dark spots grew until I couldn't see anything in one eye. The other eye was fine. It lasted about 10 (terrifying) minutes.

Barbara, Thanks for sharing your experience. I was wondering if it was something like low level nerve damage from the surgery. Interesting.

Sommer Russell Robert, I am 16 months out from surgery and still experience migraines. Nearly daily. I have been s ... Read more

Sommer Russell Robert, I am 16 months out from surgery and still experience migraines. Nearly daily. I have been seeing a neurologist and she said that for whatever reason my regular migraines have become a complex migraine. They literally mimic almost any type of migraine that is out there. One day I can have a vertigo migraine and the next my words are wrong. They are slowly getting better. I sometimes have a black dot, but have never had one to cover my entire eye. I will have to look up the picture of the migraine painting. I was reading that they are close to having bio-markers so that they can definitively say someone has a migraine. So many people say they have migraines, but there is no real way to prove that we do. I would totally pay for that out of my pocket to prove to the world that I have migraines. At first I blamed surgery, but I really think that it is me being on coumadin. My body knows that it isn't at homeostasis and it is really mad about it. I believe this because the higher my INR the more frequent and hateful my migraines are. Have you made any connection between INR and migraines?

Sommer Russell Oh, and something that I just thought about as well on your 1 and 2 and can really help with pain for ... Read more

Sommer Russell Oh, and something that I just thought about as well on your 1 and 2 and can really help with pain for the headaches as well... My neuro sent me to a Physical Therapist to work on some of the tension from the migraines. He was actually a very big help. He said the surgeons are great and put you back together really nicely, but no matter what they can't line you up exactly right. The body starts moving and shifting to compensate. This can weaken our core and cause headaches, body aches, chest aches. He told me about doing a yoga pose that really helps with my chest- roll a beach towel up long ways and lay down with it running along your spine and stopping right below your head and right before reaching your tailbone. Put your arms out like you are Jesus on the Cross and stay there for a few minutes each day. This has really helped stretch out my sternum. He also said that the only non-traditional medicine that has been proven to help with ocular migraines to pay attention if your hands and feet get really cold. I happen to ALWAYS have ice cubes for hands and feet. He said to put heat packs on them if you notice this because it is sometimes a shift of something going on about to cause a migraine.