How little things get big – balance issues

TBI Vestibular Cascade (click to enlarge)

You know, when I fell in 2004 and smashed my head on the back of those stairs —bang-bang-BANG– and I got up from the fall and sat myself down at the table in the next room to collect myself, I never in all my life thought it would make the kind of difference it has. It’s crazy. It’s not even like I was in a horrific auto accident or I was in an IED blast or I was shot in the head. I just fell down the stairs, right?

Big deal…

Except that it was. It started out small, then turned into a big deal. Who knows what was going on inside my skull at the time? Who knows if there was some swelling? Who knows how many neurons fired so wildly that they died off? Who knows how much protein and other substances leaked out into my brain to fry my connectors? Who can say? The difficulties I experienced were NOT huge deals. Yes, I had a hell of a headache. Yes, I was disoriented. Yes, I was more quiet than usual. But it was just a fall, right?

This is one of the most problematic aspects of mild TBI — the issues that come up may not seem like a lot, at first blush. But cumulatively, and over time, they can usher in a lot more complications that just screw everything up. It’s not so much that I had these significant issues, like not being able to walk or talk or remember my name. The issues were much more subtle, and that made identifying them and dealing with them that much harder. If you don’t know something’s wrong, you can’t fix it, and I had no idea that anything was wrong for years.

In that time, I managed to lose a really great job that was a “no-brainer” for me and looked like a very promising long-term engagement. I managed to make a handful of really dumb job decisions, and I managed to spend just about every penny of my nest egg, to the point where, six years later, I’m just now starting to not live paycheck-to-paycheck, and I’m just now starting to get out from under the huge debt load I acquired over the years.

The thing about mild traumatic brain injury, is that it sneaks up on you. It introduces a hundred little variations to your life, all of which individually would not seem like such a big deal, but together can throw you into a tailspin that some people never come out of completely.

The worst thing is, even when you learn to deal with the tailspin, it’s awfully easy to forget and lose track and end up doing and saying things that get you into trouble. On a certain level, you know it, but you can forget…

Take for example, a simple thing like being off balance. I’m not talking about the kind of vertigo that has people falling over in public places or unable to leave their homes. I’m talking about just feeling off balance all day, every day, and never being able to get away from it far enough to regain your balance – literally or figuratively.

If there’s one thing that’s wreaked havoc in my life like nothing else, it is balance (vestibular) issues. It’s crazy, how much they have affected my life and screwed so much up. Now, I’ve talked to doctors about this over the years, but my problems were never enough to warrant heavy-hitter drugs (and the ones they prescribed to me, like meclizine) didn’t help at all. They just made me foggy, which is about the last thing I need. Comparatively speaking, anyway, my balance problems are “mild” — when considered just in and of themselves. But in the context of my whole life, and cumulatively, they can be a real (excuse me) bitch.

Here’s how the “TBI Vestibular Cascade” plays out with me

* Falls, injuries in the background

o TBI – multiple TBIs, actually
+ Cognitive impairment – not huge, often not noticeable, but enough to be a real pain in the ass that throws me off
+ Behavioral issues – can be a problem, especially when stressed – fatigue feeds agitation which feeds anxiety and irritability, which can spiral into rage in an instant’s flash. Not good.
+ Emotional issues – ditto
+ Functional impairments – like physical issues – sensitivity to light, sound, touch, and of course, being off balance
# Vestibular instability (feeling off balance most of the time)
o Proprioceptive disorientation – not being able to sense where my body is in relation to other things
o Experiential issues – keep bumping into things
o Spatial – see above
o Visual – so busy trying to keep upright, I don’t see things that are right in front of me (inattentional blindness caused by focusing 100% on keeping my balance)
o Taste/Smell – either non-existent or pumped up to 300% because of stress
o Tactile – see above
o Cognition – disorientation stresses me and cuts in on my cognitive resources… just can’t think
+ Learning – and because I’m having trouble thinking, I have trouble learning

* Sensory extremes – examples below:

o Visual – I’m so off-balance that all I can think about is staying upright, which means I don’t see things that are right in front of me, because of inattentional blindness, or perceptual blindness, “the phenomenon of not being able to perceive things that are in plain sight” which is caused by focusing 100% on keeping my balance. I am so busy attending to my balance issues, that I literally have n

o bandwidth left for seeing what’s in front of me.
o Spatial – Ha! When I’m off balance, I have a tough time figuring out where things are. I bump into things, knock things over, break things. Stressor…
o Tactile – see above
o Taste/Smell – When I’m stressed over my balance problems, I can have taste/smell that’s either at 300% or is non-existent. It’s unpredictable. And annoying. Another stressor, depending on the circumstances.
o Experiential – I’m having a really tough time, and I’m struggling to keep up… because I’m struggling to keep upright.
o Learning – it would be nice if I had the bandwidth to learn, but I’m in the process of trying to keep myself from falling over, so I’ll have to learn another time.
o Cognition – with the stressors of physical issues, my cognition is really impacted. I just can’t think. A lot of it, I think, has to do with being so fatigued from my physical issues, that my mental facilities are impacted.
o Sensory inattention
+ Sensory muddling – sometimes nothing makes sense, it’s all a big mish-mash of “stuff” I need to sort through.
+ Misinterpretation of clues – and sometimes I get turned around by all the stuff I’m sorting out, that I misinterpret things that are said to me, or I miss a social clue, like someone stopping talking to me, when I’m having a discussion with them. One would think I’d catch the hint and be quiet/give them a chance to talk, but when I’m whacked from being off balance, it’s really easy for me to miss those kinds of clues.
o Interpersonal social issues – result from the problems I have above
+ Social withdrawal – How many times can I totally screw up social interactions and still stick with it? After a while, it seems like a total waste of time. Really.
+ Lack of communication and interpretation – When I shut down, because I’m having so much trouble balancing, I stop communicating and interpreting what others say to me. I just don’t have the energy or bandwidth.
+ Learning differences and disabilities – As a result of withdrawing and getting turned around so many times (and not just in adulthood, but when I was a kid as well), I’ve learned to learn in different ways. These differences, when not integrated into the world around me, can become disabilities. Not because of me being disabled, but because I’m just different, and others can’t always detect and allow for that.
+ Social development and integration issues – all of the above add up...
+ Social withdrawal – and I figure, “Why bother?” It’s much easier just being off by myself.

* Vicious cycle of continued neglect and compounded physical issues

o Crime and punishment – I’ve had more close calls with the cops because of communication issues than I can count on the fingers of both hands. I’ve also been routinely punished by teachers and other authority figures for “defying” their orders, when I simply didn’t understand. My parents had to step in and save me from some of my teachers, because the teachers weren’t being clear with me, and I couldn’t let them know that I didn’t understand. Now, I’m not mapping all my crime and punishment experiences to vestibular issues, but when you’re so taxed and fried from keeping your balance and you have no energy left for social interactions, it can be an issues.
o Employment/Social functionality issues – see above
+ Financial instability – When you’ve got communication and social interaction issues, and you’re so busy just trying to stay upright that you run out of steam, it’s easy to get into financial trouble. REAL easy.
o Compromised relationships – arising from communication and interaction issues, leading potentially to:

+ Abuse, Divorce, Instability, Unemployment, Isolation

+ Health neglect – fatigue cuts in on your ability to care for your health, including detecting when you need help

+ Worsening conditions – can go unnoticed, unaddressed, and communication issues can keep you from seeing a doctor because of the difficulties
+ Re-Injury – fatigue can stop you paying enough attention to the world around you… going faster, going faster… ending up in a jam again
o Trauma Response to Circumstances – what’s more, on top of all of this, you’ve got a physical trauma response (your hyper-alert sympathetic nervous system kicking into overdrive on an instant’s notice, whether or not it’s warranted), which makes things even more… interesting
+ “Normal” circumstances trigger trauma response – even if there’s no immediate danger, the perception of danger can set off your sympathetic nervous system, sending you into fight/flight
# Physical issues > emotional response – you can have an emotional response to physical issues… becoming emotionally overwrought when you’re off balance (this happens to me a fair amount – I tend to start to panic, when I feel myself getting off balance yet again)
# Social issues > trauma response – unsatisfactory social situations can trigger you… like that flood of dread that comes up when you contemplate going to a party, after the last time you went ended in some sort of humiliation or ridicule.
# Interpersonal issues > trauma response – bad interpersonal interactions can also produce a trauma response… like seeing a cop in your rear view mirror and physically re-experiencing the last really unpleasant encounter you had with a “statey”.
Vestibular issues may resolve on the surface, but the underlying experiences that accompanied them before remain, setting up an associational cascade of PTSD-like reactions to the conditions that resemble the original problem.
It’s a lot, I know. But this is all consistent with my own experience. I haven’t gone to the great extremes of incarceration and divorce and bankruptcy, but I’ve been damned close, and the fact that I’ve narrowly escaped so many times makes me believe in a Higher Power of some kind. In fact, the perception of others that all this couldn’t possibly come from something as simple and as “minor” as vestibular/balance issues, is testament to the very human tendency to play down things. And it speaks to why and how mild TBI is so often under-estimated in its ability to disrupt, even destroy, lives.
It’s not that I’m looking for sympathy or to have anyone cluck their tongues over how hard I have it — I think it’s just important to point out the ways in which TBI symptoms can cascade into one another, building up and building up until they turn into serious problems that aren’t easily dealt with.
The key for me is to head these things off at the pass and keep myself from getting too dizzy to begin with.
[x] Stay rested – check
[x] Avoid dairy like the plague – check
[x] When I AM dizzy, slow down and take my time – check
[x] When I AM dizzy, make sure I get extra rest – check
[x] When I AM dizzy, DON’T PANIC – check
Because I know what can happen, if I don’t take care of myself. It doesn’t always progress to the extremes described above.
But I know for damned sure, it could.

Finding balance

Source: Jason Dunn

I’ve been reading the DOD’s new Mild Traumatic Brain Injury Pocket Guide, and really appreciating it.

It talks about definitions of mTBI and common symptoms, and it talks about different approaches to take to treat them. What a breath of fresh air — which is probably not the sort of thing that often gets said about the U.S. Department of Defense.

Included in the topics are:

  • Management of Concussion/Mild TBI
  • Management of Headaches
  • Management of Other Symptoms
  • Management of Dizziness and Disequilibrium
  • Management of Fatigue and Sleep Symptoms
  • Management of Vision, Hearing and Olfactory Symptoms
  • Management of Irritability
  • Management of Appetite Changes and Nausea
  • Cognitive Rehabilitation for Mild TBI Consensus Conference: Summary of Clinical Recommendations
  • Driving Following TBI Conference: Summary of Clinical Recommendations

It’s really great to see these pieces of information collected in one place, in a pocket-size format (although on my computer, I look at it full-screen, so it’s not in pocket form for me right now).

I’m particularly interested in reading what they have to say about dizziness and disequilibrium, because that’s been such a big issue for me for so long. Being dizzy has wreaked havoc with my health and mental state more than I can say — I used to have such a hard time staying upright, I’d flip out over every little thing, and I couldn’t talk to anyone, first thing in the morning, while I was trying to get ready for work. I had to focus so intently on what was in front of me, and not falling over, that if anyone spoke to me while I was getting dressed or making my breakfast, I would lose it.

Seriously, I was a friggin’ bear to deal with, first thing in the morning. For years. I feel  sorry for all the folks who have had to deal with me, when my vertigo was at its worst.

Being dizzy and losing my balance didn’t help, back in 2004, when I was standing at the top of some stairs and my spouse called for me to come get something. I had no business standing at the top of those stairs in stocking feet, but I was… and in the space of a minute, I was lying at the bottom of those stairs in a foggy daze, not quite sure how I got there, but remembering quite clearly the BAM-BAM-BAM of my head on the steps as I went down.


Anyway, enough dwelling on the past. I’m getting back to balance, I must remind myself.

It never actually occurred to me that it was abnormal to be so dizzy all the time, till I started talking to folks about my recurring intense vertigo a few years back. I had told one of my past doctors about being super-dizzy when it was particularly bad, some time back. They just put me on meclizine, which did absolutely nothing for me at all. It didn’t even take care of the nausea.

Looking at the Pocket Guide, I see that pharmacologic treatment has not been shown to be effective in chronic dizziness after mild TBI. A ha! There it is — a possible explanation for why meclizine works for friends of mine who have vertigo, but it does nothing other than make me even more numb and whacked than I already am.

Of course, at the time I was seeing that doctor (I have since moved on – they were a bit too pill-happy for my likes), I didn’t know about my mTBI issues, so I was just another medical mystery that they shrugged their shoulders over and sent away with some comment about how I’d just have to wait it out.

Interestingly, I’ve never been examined specifically for dizziness and disequilibrium. With me, it tends to come and go — it’s worse when I’m tired or I’m fighting off a cold or I eat something with dairy ingredients in it. And of course, I’m often just peachy keen in the dizziness department when I go see my doctor.

So, I’m kind of on my own in this. But reading further, it looks like I’ve been doing the right things for this. They recommend:

  • Perform neck stretches — I do this, especially in the shower in the morning, when I can get really hot water on my neck and shoulders. That makes stretching easier. I also stretch before going to bed, which helps me relax and get to sleep.

  • Modify activity and change positions slowly — I’ve had to do this by default. I learned the hard way a bunch of times… moving too quickly and changing positions quickly when I’m dizzy is a recipe for extensive bruising, not to mention panic.  Both are less than optimal.

  • Change sleep position — I started sleeping on my back a lot more,  a few years back, and it seems to help. But there’s nothing like just rolling over and going to sleep.
  • Perform vestibular rehabilitation exercises — I do my morning workouts, and I’ve been adding more balance work to the mix. I have been doing this crazy-hard move (sometimes holding onto something while I do it) — I stand on one foot, and raise the other leg up, with my knee bent. Then I bend over and touch my left hand to my right toe, and vice versa with my right hand and my left toe. Not only does it really work my legs, but it’s also incredibly difficult for me to do. I’ve gotten to the point where I can do it without hanging onto something, but it’s still hard. I may be fooling myself, but I seem to be able to tell a difference in my balance, since I started doing this.

I’d like to add to this:

  • Keep yourself from getting sick and congested (my ears really do a number on my balance, when I’m congested)
  • Avoid dairy (or other foods you may be alergic to). When I cut out dairy, it cut my balance issues by 2/3. No kidding.

I still have issues, now and then, but they’re not constant, so I notice them immediately and I do modify my behavior. I avoid standing at the tops of stairs for too long. I also pay extra attention when I’m going down stairs or doing other balancing type activities. I also don’t go running around out-of-doors, climbing on rocks and jetties like I used to. (What a loss that is — I used to love to climb and jump and hop from rock to rock, but my better sense has prevailed in that — somehow, not getting hurt again is worth the cost.)

Yeah, taking steps to avoid problems has become a more regular part of my life over the past couple of years. Maybe I have a better appreciation of the risks I run. That’s certainly true. And I’ve also gotten in the habit of doing things that will help prevent future injuries, not just avoid them. Like working out. And working on my strength and flexibility.

Balance for me seems to be as much about muscle strength, coordination, and mindfulness as what’s going on in my wiring/inner ear. The stronger I get, thanks to my workouts, the more balanced I feel. I’ve notice myself becoming more coordinated than I was before. I’m sure it’s a combination of things, not just my brain/wiring. But I have been noticing an improvement.

Of course, there’s always the occasional flare-up — sometimes out of nowhere, for no reason that I can tell. But as long as I keep an eye out and I pay attention, I have a chance of staying upright — and doing things that will keep me that way… or at the very least, keep me from falling over.