Topic: Miscellaneous - Mild TBI and Symptoms

Question:

At the end of 1995 I was involved in a car accideent and struck the top of my head. I have limited memory of the accident and the period immediately after. Over a period of months various changes in my being became apparent including migraines, memory problems, "grey-outs" (not quite a black-out), extreme depression with suicidal ideation and attempts, concentration difficulty, loss of initiative to do anything including previous interests in working out at the gym and doing home renovations, loss of sexual interest (libido) (my blood was recently checked and hormone levels are good), tinnittus and minor hearing loss, etc. etc. etc.

Diagnosed with MTBI, I am now 41 and still feel as though someone has taken the old me away and replaced me with someone I really don't much like. I have been seeing a psychiatrist for two years and have tried so many different medications I can't keep track of them. I now take celexa (20mg) and lithium (1200 mg) each day. I have cut back on my work load substantially but am still working and able to earn a reasonable living.

I have tried to improve my social life but really would rather just stay at home and read. I drive, though my wife prefers if I don't as I have very short losses (1-2-3 seconds) of "consciousness".

I often feel like crying for no reason and can find myself unexpectedly with tears in my eyes in the middle of doing work. My emotions all seem so finely strung that I can be in tears over a newspaper article or just infuriated over some little thing that doesn't deserve such a response. I usually feel terribly lonely even though I have close family and friends - I just don't feel like anyone can or does understand the mess I feel I am and usually don't want to share what I truly feel inside.

Can I expect the depression to ever go away? Is it common for there to be a loss of libido (this is very hard on my wife also!) after MTBI? Can I expect any of the other symptoms to clear up? Do you have any recommendations for specialists or whomever that can maybe help me deal with all this and address some of the specific problems?

Thank you. Dale

Kathy's Response:

Dear Dale,

You are dealing with a lot of issues and I would like to address the ones I think are the most important first.

Safety
Your comments related to depression and driving jump out at me as being the most important to address first. You wrote that you have experienced "extreme depression with suicidal ideation and attempts," and that you continue to drive even though you experience "grey outs," or "very short losses (1-2-3 seconds) of 'consciousness." Before I go on, I would like to encourage you to send this message to "Ask a Doctor" too, just so you get a medical opinion as well as feedback from a layperson.

Depression and Safety
This is serious, Dale, and I'm glad to see you are getting treatment with a psychiatrist for your depression. Whenever depression seems to be heading us in a direction where we feel like ending it all (and of course, attempting to do so), we need to be under medical care. This is about as basic a safety issue as there is.

Driving and Safety
As far as driving is concerned, this is always a touchy issue. Sometimes just the suggestion that a person stop driving makes them "ballistic" (hope that doesn't happen here). Please try to hear this as objectively as you can. If you are still driving, if you have "grey outs" or loss of full consciousness for a few seconds, you are at risk! It only takes one incident (and a split second, at that), to get another brain injury -- and perhaps hurt someone else in the process. Statistically, persons with brain injury are more likely to acquire another brain injury in their lifetime.

Our ability to control troubling feelings is an issue with driving safely too. You stated, "My emotions all seem so finely strung that I can be in tears over a newspaper article or just infuriated over some little thing that doesn't deserve such a response." If you get infuriated easily while driving, this could put you at additional risk. The good news is that there are ways to deal with the kinds of out-of-control feelings some of us who have brain injury experience. My suggestion would be to explore some of these feeling-management strategies, and master them, before getting behind the wheel of a car.

Statistics
The reasons those of us with brain injury are at risk for re-injury appear to be related to things like like experiencing "grey outs" (or more full-blown seizure disorders), as well as having slower response and reaction times while driving or walking, plus problems with emotional control, judgment and decision-making.

Please be open to either finding another mode of transportation, or at the very least, getting some specialized driver education. Professional driver training instructors who have experience working in a rehabilitation setting with persons with cognitive impairment, or who have experience working with older people who may have had strokes, would be a good way to get started. Rehabilitation facilities that treat persons with brain injury often have access to community resources, and can sometimes do the actual testing and training we need to be safe on the road. I was tested for driving ability after my brain injury, at the John Muir Medical Center in Walnut Creek, California, while I was still in residential rehab. I felt they did a good job helping me understand the issues and giving me the special training I needed to drive safely.

My overall suggestion is to focus on being SAFE in all ways! If this means medical treatment for depression or if it means finding other modes of transportation, or getting special driver education, this is a small price to pay, in the scheme of things.

As far as driving is concerned, you need to know that the odds are not in your favor if you continue to drive even though you have what you call "grey outs." In some states, persons who have had brain injury who have a driver's license need to be evaluated by their Dept. of Motor Vehicles, to make sure they are safe on the road. In fact, in some states (perhaps all states, I do not know), physicians are obligated by law, to let their state's Motor Vehicle Dept. know if they are treating a patient has had a brain injury or seizure disorder (even so-called "absent" seizures, which are not full-blown in the way we normally think of seizures).

Specialized Driver Education
In my case, I did not have any seizures, so that was not an issue. But my reaction time was slower. And my ability to process visual information was impaired. I had a hard time feeling comfortable in situations where there was too much motion (such as a busy mall or on a highway), and I experienced a quicker temper while driving than I had before the injury.

When I actually started specialized driver training, my instructor noted all kinds of things he could help me with. One example is that my eyes were "fixated" and did not scan properly in order to be a safe, defensive driver. It's important to note I was not aware of any of these issues until I was evaluated. Even after I was told about these things, I had a hard time believing anyone because I didn't feel any different!

If you have ever tried to talk to an elderly parent about their driving, this can be an example of how others feel when they talk to us about this subject. My father is 83 years old and still drives. The problem is that he continues to tailgate other cars, and he habitually switches lanes. He basically drives the same way he did when he was 40 years old and his reaction time could help him out in "marginal" situations requiring quick reaction responses. His reaction times are much slower than they used to be, but he will argue they are not. I can see it, but he can't. Get my point?

Medications and Driving
You should know too, that some medications don't mix well with driving. Please, please Dale, keep your safety in the forefront.

Over the years, I have networked with hundreds of people with brain injury -- and RE-INJURY is unhappily common! Medications we need to take sometimes have side-effects we don't like or try to ignore, and this can affect driving too. So, please be sure to let your physician know you are driving so he can give you guidelines, based on the medications that have been prescribed (get this in writing if you can, or tape record what he or she tells you so you can transcribe the guidelines). You should also probably check with your pharmacist too! You want to be as safe as possible, in all situations! Perhaps there is a way to organize your driving around the times you need to take various medications. You won't know if this is a good idea or not unless you discuss it with your doctor!

Libido
This is also something to talk to your doctors about. As well as a good talk-therapist (pychologist) who understands both brain injury and sexual issues.

I can tell you this much -- changes in libido seem to be quite common after a brain injury, based on the networking I've done over the years with my peers. Both in terms of what is called "disinhibition" (where it appears a person's drive is either increased or out of control), or in terms of lack or desire. I do not know the medical or psychological basis for any of this because I have not any formal training. All I can tell you is that all kinds of changes seem to be possible following brain injury --changes in our emotions, perceptions and physical feelings. I know people who used to be affectionate and who can no longer tolerate being touched. I know people who had been outgoing and became reclusive and reserved after their injury. I know people whose families said they had been "mean" before their injury and then become "nice" after their injury (their words). All kinds of changes in all kinds of forms. Perhaps working with a good talk-therapist will be able to help you either alter some things that may make you more comfortable, or will help you adjust and be happy with "new you." The talk-therapist could even be a social worker or other professional with specialize training in family issues. The important thing is that they truly understand how to help persons with brain injury.

As an aside, I gained an appreciation for some of the physical effects of brain injury when I discovered that I had the taste of hamburger in my mouth, no matter what I was eating -- or even if I wasn't eating anything at all. This went away eventually, but while it was happening, it was very distrubing. The experience was educational though, because it taught me to be aware of all kinds of changes my brain was causing "me" to have that made me feel different from the way I did before (physically and emotionally).

Compensation Philosophy
Dale, I don't know if you have had therapy where you have been taught how to compensate for one or more of the issues you are dealing with. If not, you may want to look into it. The reason is because learning to compensate for memory problems and other cognitive issues can help us overcome some of the depressing things we have to deal with after experiencing a brain injury. It can also give us more self-confidence and help us feel competent enough to get out in the world again!

Compensation and Depression
It is my understanding that depression can be rooted in chemical imbalances in the brain, reactions we have to disturbing life events we feel we cannot get out of, or a combination of these things. Again, talk to your doctor about it. But also try to use compensation strategies and see if it helps to use some of the strategies others with brain injury use to make them feel and be more competent. Having more control over in life can make depression go away, in some cases (again, depending on the type of depression you have).

An example of what I mean by "compensation" is this. When I got out of the hospital, I was not able to read with any understanding (I could decode words, but not read sentences or paragraphs with understanding). I would read a paragraph over and over and "not get it." This was depressing! I had been an avid reader all my life. I had done graduate work at the University of Chicago in literary criticism. And here I was, 38 years old, unemployed, in brain injury rehab., and I could not read a newspaper. I could not work, and could barely remember what I had done during the day. I was scared out of my mind!!! Yes, I was also depressed.

I was lucky, though, because I started learning compensation strategies early on in rehab. I learned to write "Memory Notes" so I could retrieve (if not remember) what happened during the day and have some sense of control. I learned how to write routine procedures I needed for basic self care (and later other things), in steps, so I could "remember" how to get dressed for work. I learned I could use compensatory strategies if my mind went blank. I was also engaged in meaningful activity during most of the day (learning all the strategies), so I felt that I was doing something that gave me hope!

Now, my injury was not diagnosed as "mild," as your was, but strategies work for all of us with brain injury -- whether the diagnosis is "mild," "moderate," or "severe." Learning to write and use "Memory Notes" is a basic strategy all of us can use. Learning to write what I call "routine procedures" on STEPS cards, helps. Learning to turn to a "Strategy Page" when dealing with a troubling emotion helps. All kinds of things. E-mail me privately if you want to see specific examples for these things <KathyM@brainbook.com>.

E-Mail Support and Discussion Lists
You can learn a lot about compenation strategies from others with brain injury. One of the best ways to learn about what has worked for others is to join one or more of the interet-based support and discussion lists. I facilitate one called TBI-WORKING, which is focused on issues related to working again.

I also teach compensatory skills using e-mail, on a list called TBI-TEACHING. E-mail me privately if you want to find out more about this particular forum.

Other Symptoms
You asked if you can expect other symptoms to "clear up." It depends on what you mean by "clear up." I would venture to say that many symptoms of brain injury do not clear us as in "go away on their own." We are sometimes led to believe that things get better with time, but often they do not. Personally, I do not believe "time" is everything it's cracked up to be when it comes to overcoming brain injury symptoms.

In my experience, many of the most troubling symptoms have been out-smart-able, and in many ways over-come-able. Most of them did not "go away" (ie. "clear up"). My memory is still swiss-cheese like. I have trouble with processing information. Lots of things. But I function decently day-to-day because I am a master of compensatory skills and strategies.

You might find that reaching out to your peers and participating on the e-mail lists makes some of your loneliness go away. You will find people on there who know precisely what you have gone through because they have been there. Many people on these lists have told me they started to feel connected and hopeful again after having a place to talk to others who truly understood what they were dealing with.

Specialists who can help
You asked if there are specialists who can help. Yes, though I don't know all of them. I suggest you join a list like TBI-WORKING and ask the participants on there to tell you about specialists they use and like. The list is a good forum for asking questions and getting all kinds of information.

Dale, there is LIGHT at the end of this dark brain-injury tunnel! You just haven't found it yet. Keep reaching out -- especially to those of us who have "walked the walk" and have battled back. It will help you find your way out!

Hope this helps.

Kathy M.

University of Missouri - Columbia
School of Health Professions
Great Plains RCEP