Flicker Vertigo

[AlDenteUmber]

I've been having seizures probably my whole life, but it was mistaken for motion sickness for most of my life. After I became close with a friend who was familiar with seizures noted that it was not normal for someone to become unresponsive, have muscle spasms, and then feel terrible for the rest of the day after riding in a car, I was able to meet with a neurologist and get an EEG.

I should also note, that the seizures have gotten worse as I get older and are very obviously triggered by lights and moving patterns. As a child my indications that I got "motion sick" because of the moving shadows was quickly dismissed by doctors.

Unfortunately, the neurologist I recently met with was also extremely condescending and the EEG came back normal. So I have done some more digging into WTF is wrong with me and an extreme case of Flicker Vertigo meets the bill:

The strobe light effect can cause persons who are vulnerable to flicker vertigo to experience symptoms such as:

• Become disoriented and/or nauseated
• Blink rapidly
• Experience rapid eye movements behind closed eyelids
• Lose control of fine motor functions
• Experience muscle rigidity

These effects are typically very minor and will most often subside within seconds once exposure to the strobe effect has ceased, though residual nausea and minor disorientation may be felt for several minutes.

In extremely rare cases, severe reactions can happen including:

• Total persistent loss of bodily functions
• Loss of muscle/motor response
• Loss of control of aircraft or other moving vehicles
• Seizure

Full text available: https://en.wikipedia.org/wiki/Flicker_vertigo

This condition has very little research and what does exist has been done solely on helicopter pilots. Does anyone else have this or know more about it? It's actually very common to have it mildly, but I haven't met anyone else who has it to the extent that it effects them everyday and presents as seizures. Do you think it is a form of epilepsy?

 

[HumbleDeer]

I am very sensitive to things like these too; and if they go on for long enough they definitely do contribute to the seizure treshold lowering. It's interesting. I don't know what I have, no one cares to know what I have.

 

[AlDenteUmber]

I definitely feel the "no one cares to know what I have". If it isn't obvious everyone just goes "Must be PNES. Better go get help with your irrational anxiety toward ... flashing lights"

 

[Porkette]

Hi AlDenteUmber,

Welcome to the forum! What you are describing sounds like when person is photosensitive which means certain colors or
flashing lights will bother then and often put them into a seizures. I had that problem until I had brain surgery. It begins
in the opptitical lobe of a persons head which is the very back of the head where a persons eyesight is. Then if a person
sees certain colors or flashing lights it will lead into a seizure. What you should ask your Dr. to do is a special e.e.g. where
they flash different color lights one at a time and by doing that they can tell what colors will bother you the most.
Florescent green, amber, and bright white were the colors that bothered me the most.
Ask your Dr. to try you on Diamox this drug will help calm all of this down and it stops a motion sickness also.
I've been taking it for yrs. and it has reduced my seizure a lot.
I wish you the best of luck and May God Bless You!

Sue

 

[AlDenteUmber]

Hi Sue,

Thanks for the insight. Is the EEG where they flash different color lights have different results than just white? They flashed white lights at the EEG I had and it did trigger a seizure but there was no epileptic brain activity.

Al

 

[Porkette]

Yes, they flashed different color strobe lights one at a time and this is how they found out what colors were triggering
the seizures. First it would be the white light flashing, they a florescent green, blue and many other colors. I wish you only
the best of luck and May God Bless You!

Sue

 

[Nakamova]

Hi AlDenteUmber --

You might be experiencing migraines (close cousins to epilepsy). Those can also be triggered by flickering lights or shadows, motion, etc. and aren't always accompanied by a headache. Sometimes there's a genetic component -- have any family members experienced similar symptoms? And sometimes they can be caused by head trauma. I experienced

If you can, get a second opinion from a different neurologist. Migraine or epilepsy meds may help, and are worth a try even in the absence of a confirming EEG. (Any neuro should know that a positive EEG can help rule in an epilepsy diagnosis, but a negative one can't rule it out).

In the meantime, keep a detailed journal of episodes (if you don't already). Look for other factors that may be contributing (such as fatigue or certain foods) and avoid them if possible. With both migraine and epilepsy, people can be sensitive to MSG, aspartame, red wine, cheese, etc. Specialized sunglasses might help cut down on the flicker. In the case of migraine, yoga and exercise can sometimes help as well.

 

[AlDenteUmber]

Hi Nakamova,

I had not realized that migraines don't have to include a headache. It is possible I could be experiencing migraines. None of my genetic relatives have migraines or epilepsy, but my grandma is also sensitive to flashing lights - just not quite as bad.

The more I look into neurological conditions it seems like there are a lot of unknowns. I wish the general public would understand this. It's pretty easy for me to avoid my triggers in my own home, but it's a lot harder to get other people to be accommodating without being able to point at a specific medical condition.