Brain Fog and its related condition, Heavy Head are repeated reported by Ataxians as a condition that debilitates and discourages. Yet, the medical research on these conditions as they relate to Ataxia is nil.
This anxiety and brain fog is annoying! - Lauren (FaceBook: Cerebellar Ataxia)
When I read Lauren’s post last week I resonated with me. It is not the first post about “brain fog” I’ve read and it won’t be the last. Back in 2020, Melissa wrote that the brain fog she experienced seemed to rob her of the words she wanted to say. Earlier this year, Zar described how he walked through a store in a brain fog that affected his vision, walking, and emotional self perception. I could identify with each of these individuals and their experiences with this thing called brain fog. But what is brain fog? Is it a real term or some phrase we have just started to use to describe that weird “Funk” that is pretty debilitating?
During my initial diagnosis period I reported to my doctors of having a “thick head” feeling. It was like cotton balls had filled my cranium making me woozy, exhausted, confused, and occasionally disoriented. This description made sense to my vestibular-neuro specialist in some way which helped to advance further investigation. As my ataxia has progressed, my thick head feeling is now accompanied by this condition we refer to as “brain fog”.
Before I was showing ataxia symptoms that were recognizable, I had heard of brain fog from a friend who was going through chemotherapy. Checking on line, brain fog is commonly associated with treatments for cancer. There seemed to be a cause and effect relationship in the cancer scenario that was pretty clear. Disease + Intense Drugs = Brain Fog. Not the case for Ataxians. Further checking online showed something disturbing.
I could not find any research articles that looked at the relationship between ataxia and brain fog or heavy head. How could symptoms that seem to have broad patient manifestation not be researched?
Courtney described her first encounter with brain fog. “It generally scared me,” she wrote in 2021. Her ability to recall words and even the year were disabled. “I’m actually quite scared I’ve hit a new phase in my disease.” I suspect many Ataxians have felt the same sense of anxiety, which actually fuels brain fog.
So we use the term brain fog, but what is it actually? And does heavy head have anything to do with this?
Both brain fog and heavy head are recognized terms used within the medical profession and both have been researched so as to provide patterns of causation and descriptions of symptoms. Interestingly, brain fog, has been described as a symptom of heavy head.
The sources of brain fog can independently create the sensations of brain fog. For example, stress or anxiety independently have been seen as producing the sensations of brain fog. However I draw your attention to the list of sources as a whole (see graphic above) and it is evident that people with ataxia (the first source) often also have the other five sources at play. Ataxians often report difficulty sleeping, anxiety, stress, shifts in their diet, and a plethora of symptom related medications. Thus, it seems obvious that Ataxians will experience some or all of the sensations related to brain fog.
If by chance you experience brain fog, there is a possibility that you also experience heavy head. The sensations of heavy head not only included brain fog, but skull pain, neck stiffness, fatigue, head pressure, and dizziness. The sources of heavy head appear to relate to muscle strain (ataxia tension and spasms?), brain injury (degeneration of the cerebellum?), vestibular disorders (ataxia balance), and disease related fatigue (the product of ataxia).
While brain fog and heavy head have not been researched either medically or phenomenologically in the context of ataxia, they have been recognized as symptoms in other medical instances. I think this helps us, as Ataxians because it provides authenticity, a kind of legitimacy to our experiences with these two. The sensations we are feeling are real and they relate to the disease. It is important that Ataxians are respected when we declare we suffer with heavy head or brain fog to those close to us, as well as to our medical professions.
Keeping with the lack-of-cure-for-ataxia theme, there really was no single curing response to treating brain fog. However, there are some helpful tips in attempting to manage it.
1. When you sense that it is one of those days, reassess what you have to do that day with the idea of taking is slower and with less pressure to achieve everything. Don’t load up more stress on yourself as that is a triggering source of brain fog and heavy head.
2. Be patient with yourself. When you feel confused, forgetful, or distracted, take a deep breath or four and recognize that it is the fog and it will pass.
3. Make a list of the sensations you feel in these situations. When you feel better, review the list with those close to you to help them understand the complexity of what it is you are experiencing and ask them for their support.
4. Consider taking ibuprofen for heavy head if you feel headache, stiffness, or face pressure. Take a break and let it work. If you have your list of particular sensations, review it with your doctor to see if there is something that might be more effective for you.
5. Observe what happens if you drink coffee or sweet beverages during these episodes. If it ramps up, consider eliminating those beverages for a few hours. (Some have found caffeine actually helps them, so it is very personal.)
6. Rest and take breaks throughout the experience. Fatigue is a clear product of these conditions. Accept that fact and try to get ahead of it. A 3-5 minute breather every 40-60 minutes may save you from being totally wiped out for the entire afternoon.
7. Fresh air and sunshine are useful resources to help keep your spirits buoyed, even when the going gets tough.
I think this is yet another instance in which we lack research beyond the medical laboratory studies that seem to dominate the ataxia knowledge base. It would be useful for both patients and medical practitioners to know if every type of ataxia produces brain fog or just certain types. It would be helpful to patients if there was research based evidence as to the onset causes, the experience durations, and best practices to respond to brain fog and heavy head.
As I was tossing this topic around in my head (it was heavy that day), I recalled a poem from my childhood by Carl Sandburg. The imagery seemed to completely fit my experience with brain fog, and I wondered if Sandburg had experienced the condition himself.
Fog
The fog comes
on little cat feet.
It sits looking
over harbor and city
on silent haunches
and then moves on.
With Brain Fog, sometimes Living into Ataxia means, taking a break.
My thanks to Zar, Melissa, Lauren, and Courtney who consented to being quoted in this article.
Comments