This website name is all wrong! I’m not dizzy and I will probably never feel that sensation of dizzy again. Dizzy is not the problem anymore. I have lost my balance so walk a bit drunk like because sometimes just keeping myself upright on wonky ground is a problem, but its not dizziness…what it IS, is oscillopsia.
It seems that this is one of the hardest things for people to understand so I’d like to explain it properly and show you what it’s like.
The science lesson
The inner ear is a teeny weeny little chamber in the base of the skull. It has two main sensors. One is for hearing and the other for detecting motion.
The motion sensor part is filled with fluid which moves according to how the head moves. These movements are picked up by the hair cells on the chamber walls and converted into electrical signals. These signals are then sent via the vestibular nerve to our brain, providing information on where we are within the space. This information is essential for our muscular, skeletal and nervous systems which are then instructed on what they need to do to maintain our body’s position, and balance.
For the purposes of this lesson though, the important part is that the information from the vestibular nerve is also sent to the muscles around the eye. The information about our head position and orientation, is used by the muscles to compensate our eye movements. This allows our eyes to fix their gaze, regardless of how our head is moving. This is nature’s simple and magnificent image stabilisation system. Its called the Vestibulo-Ocular Reflex (VOR).
If we didn’t have these compensatory eye movements, then everything would be blurry and in motion because our eyes couldn’t adjust for the movements of our head and body.
This is what it’s like for me. My Vestibular-Ocular Reflex (VOR) is completely defunct. My inner ear has been damaged so badly that it doesn’t provide enough information to my brain about where my eyes should move to compensate for movement of my body.
It’s called Oscillopsia and it means the loss of the natural system of image stabilisation and therefore the inability to see things clearly whilst moving. It means that if there is any movement of the body (walking, laughing, nodding, being in a car, talking etc), my vision jumps, jiggles, blurs and moves.
The only time its not happening is if I am sitting still and not talking or nodding.
Living with Jiggy-Blurry
This video shows what vision is like WITH image stabilisation (Vestibular-Ocular Reflex) and WITHOUT (Oscillopsia). I alternate between the two.
There are more videos on my youtube page.
This is a very tiring condition (as are all balance issues) because our brains are having to work overtime to interpret where we are in space and to make sense of all the erroneous visual information our eyes are capturing.
Currently there is no way of measuring the degree of oscillopsia people experience. Some people may only experience it now and then or when their head is in certain positions. Mine is the same all the time, though it can feel particularly worse after I’ve been looking at a screen for a while or sitting in one position too long.
Damage to vestibular function can happen as a result of autoimmune disease/Menieres Disease, tumors, Meningitis and sometimes just ‘idiopathic’, meaning they have no idea why it happens. But what’s most shocking is that the most common cause (50%) of vestibular damages is Ototoxic medications. These medications such as gentamicin (all antibiotics ending -micin) and others like Aspirin, some chemotherapy drugs and non-steroid anti-inflammatory drugs, are KNOWN to damage the inner ear. Yet these drugs are widely prescribed and used in hospitals with no warning. Please avoid antibiotics ending in ‘micin’ and I will write a fuller blog soon.
When the inner ear is damaged, oscillopsia is just one problem. The rest of the body will not be receiving correct information about the persons location in space and the person will also have to deal with imbalance, unsteady gait, dizziness, vulnerability to falls, fatigue (brain having to work so much harder to balance), possible hearing loss etc and many will also report or complain of a foggy mental feeling. I’m not sure what the basis for this is. It may simply be brain-tiredness.
Treatments and solutions
All this time I thought that as my body learnt to compensate for my lack of balance, that my vision would stabilise also. So far nothing has changed though and my research this week is revealing that it very well may not. If it doesn’t improve then I will not be able to drive again which has is such a horrific thought I can’t even bare to consider. Jogging, jumping, skipping and cartwheels in the park are also unlikely experiences for me again.
Advocurenf2.org answers the question of Can Oscillopsia Be Cured?
Yes, if the vestibular problem that causes them can be cured, or if the brain can learn to adapt to the vestibular problem. This is not always possible. In cases of severe bilateral loss of vestibular function, oscillopsia may be permanent. If the vestibular problem comes and goes, the brain cannot permanently adapt, and visual problems will be present whenever vestibular symptoms are present.
Some reports suggest that with time the severity can decrease; not because the function returns but more likely because people just adapt and tolerate it. Really very little is known about it, and how to improve it.
Dizziness-and-balance.com website by Dr Hain, expert in balance disorders states that most patients do see some improvement in vestibular function (and so oscillopsia also) over the course of a few years after the initial damage, due to these mechanisms:
- Regeneration: First, there is limited evidence that the damaged vestibular hair cells in the inner ear can regenerate, although the extent to which this occurs and the degree to which they are functional is not presently clear. Birds and reptiles seem to regenerate much better than do humans. At the present writing, most experts feel that regeneration does not account for any substantial amount of recovery.
- Marginal cell recovery: Some recovery presumably occurs because marginal hair cells recover. If this occurs, it probably happens only in the first year.
- Plasticity: The brain can rewire itself to adapt to the new situation. This is a mechanism that probably occurs in all people, although with more effect and speed in younger persons.
- Substitution: Recent experimental work suggests that high frequency vestibular-ocular responses to rotation recover via a pathway that does not require vestibular input. Thus in time, oscillopsia should improve no matter how severe the vestibular deficit. Recovery of visual acuity occurs in roughly 5 weeks. Practically, performance on the “dynamic illegible ‘E’ test” seems to recover substantially in all patients after 2 or more years, although in persons with severe bilateral loss, return to completely normal is very unlikely.
That’s great news for most people. Unfortunately I’ve been told I have total bilateral loss.
The only treatment for oscillopsia is currently medication to try to sedate the eye movements, but even the scientific papers say the results are disappointing.
Things that we jiggy-blurry people hope for
A pair of camera googles! Now that I am using a walking stick I have already lost all street cred so would be wiling to wear a pair of cameras on my eyes to help me see straight and drive. Cameras all have image stabilisation inbuilt and so when I look at my camera phone when taking a video, the image is stable. Any engineers out there please make us some image stabiliser camera glasses. Take my idea, make it yours, make millions … just please give me one and make it affordable for the other jiggly-blurry people!
The other hope for myself and others with bilateral vestibular failure is the John Hopkins Foundation who are working on a vestibular implant to restore balance for people with damaged vestibular function.
What we really need is a way to regrow the hair cells. God willing we who have had ours damaged are all praying that time comes soon. Sending energy, inspiration and resources to the scientists!
The difference between Dizzy and Jiggy
So despite the name of this website, I will actually never feel dizzy ever again. You can spin me in circles 100 times and I will not feel it because my vestibular system is gone. I don’t have the sensors to tell my brain where I am in space. If I shut my eyes or lose my balance and fall, I just arrive to the floor…there is little sensation of falling. It’s a very strange experience. When my eyes are shut, I have no sense of where I am, only gravity, holding me down!
Since the vestibular attacks in February 2015, I’ve had no vertigo or spinning (which I am immensely thankful for). But what I HAVE had is this constant, possibly permanent, oscillopsia…and off course the imbalance and unsteadiness of not having a natural balance system.
But I’m not going to change the entire name of this website to ‘Healing the Jiggy-Blurries’ though I think its quite catchy and certainly is more cheery than the actual reality of it.
If you have oscillopsia for some time, please let me know whether it has got better for you over time. Has anything helped you? Are you able to drive now? What was the degree of your oscillopsia? There is so little personal information online for us to refer to so please do share.
Thank you for reading me today. Best wishes everyone x