Have you had an increase in symptoms and can not figure out why? It’s no wonder why. Traumatic brain injury affects every part of the body in so many ways and every aspect of life. Here the brain injured person is left to figure out all the complications they deal with in life plus all the mental, physical, social and spiritual issues.
I’ve come to the conclusion that those who brain injury survivors are highly intelligent, great problem solvers, strong, determined, and they’ve become health experts trying to solve problems because research has not solved brain functioning on the cellular level or mysteries of the brain.
Medicine Drug Pills on Plate (Photo credit: epSos.de)
Everyone wants to know why you aren’t working and why you are having problems. Give them a list and see if they can solve your problems. If they do, you’ll be back to work! Even if they can help as your advocate, they only have a limited number of resources and time. Believe me, there are many people out there desperately trying to help their families. They also find themselves in the maze of healthcare.
To help you tackle the problems I will give you a small list. Keep track of what you are feeling, how you are feeling, when you are feeling this way, and what you were doing when this all started. Oh, it really sounds easy right? Forget that! You’re not just dealing with a basic headache that you take one aspirin and call me in the morning type.
You take one aspirin and nothing else works either. Is it really new? What have you changed lately? There are so many variables that can alter your ability to function at your optimal level.
Your next appointment is next year. You need to figure this out on your own. Next year is a long way off. Usually only one problem is addressed at a time. You need to be assertive when calling the doctor’s office and see someone sooner then next year. Don’t do that until you have all your findings documented or you will be wasting your time. You will be prescribed one more pill that may add to the problems already.
You might get lucky and temporarily resolve the current problem, but then it snowballs and you find yourself with more and more problems. Let’s stop this roller-coaster ride at least halfway! This is happening to you and no one else gets it. You are IMPORTANT! Every problem you are dealing with is important!
One thing that is common with those who deal with memory dysfunction is the inability to think through or connect the dots to why one has developed new onset of symptoms. This is where notes come in handy, but only if you remember you took notes!
Only if you remember to take notes. Only if you remember to be consistent. Only if …. Only if … Only if … Only if … Only if … Only if … Only if … Only if … Only if … Only if … Only if …
***Help problem solve your situation.
Notes from you, to your doctor
- New Problems
- Old Problems
- New Symptoms
- Old Symptoms
- Increase in Symptoms
- When did this start? Date? Time?
- New medications?
- Old medications? side effects? Go to your pharmacist and check.
- Recent Changes?
- Nutrition? WHAT ARE YOU EATING? Keep a meal chart.
- Laundry detergent? Was it changed?
- Body lotion? Shampoo? Anything changed?
- Sleep diary. How do you sleep? Time? Wakeup?
- Duration. How long have you had the problem?
- What helps the symptoms?
- What makes them worse?
The following is a personal example to help families understand and survivors know how difficult this is to problem solve:
I approach this because as a high level functioning TBI survivor, a retired certified rehabilitation registered nurse, and one who should have it altogether I find myself in this situation.
The past couple months have been plagued by a new onset of headaches that rendered an inability to think clearly for much of the time. Symptoms are intermittent but without resolution one can’t function even at the most basic level of functioning. I wasn’t concerned about it being something new only worse, but I couldn’t figure out why?
Finally, I realized the Adderall I take for clarity of thought also helps alleviate headaches. At least that’s what I’m thinking. I know I’m thinking much better then many people with or without injury! Since I stopped taking the medication a few weeks back I didn’t recall this as being a possible cause.
I thought about nearly everything. I believed a disruptive sleep pattern was the cause but even when I got a good nights sleep the unrelenting headaches returned.
It’s difficult to problem solve these things and most survivors of TBI only visit their physicians once or twice a year. The remainder of the year and daily challenges are up to you and your family to resolve. That is, if you have a family that will help! That’s a huge job, when most have no medical knowledge with limited time and resources.
I want others to know this is a difficult task, even 21 years after injury…but it’s not impossible! There is HOPE! I consider myself well equipped to problem solve but it’s not as easy as people think when you have a brain injury or any type of brain dysfunction hence the reason for delayed treatment and help for others like myself. It’s just not easy for anyone, with or without injury!
Again, I awoke with a headache even after getting a good night sleep. I went to the pool by 7:00 am and while exercising I felt better but my headache returned within about 20 minutes after exercising.
My conclusions were: Serotonin is increased with exercising so I asked myself do I need an antidepressant to increase serotonin? Maybe I should stay in the pool! I wondered since warm water aquatic exercises helps push the blood flow up, did I need to increase Florinef that stabilizes homeostasis of water balance and increases blood pressure?
It’s simply a complex balancing act. Don’t let anyone minimize what you are dealing with! I was partly right, and partly wrong. So much time had passed trying to problem solve that it lead to adrenal crisis (medical emergency), autonomic instability (medical emergency), and pancreatitis but it was treated urgently! All ends well.
This isn’t about me, but the complications that happen. When the symptoms are obvious they will be treated urgently…blood pressure 60/30 is significant! I never thought to take my blood pressure! Even when I should. No one reminded me. It’s just life! You ignore nearly everything daily until you can’t deal with them any longer and your body begins to shut down! At this point thinking is impossible!
It’s another day and a good day for me! At least as symptom free as it can get!
So, today it’s working for me and I’m able to write a post! Live today, don’t worry about tomorrow, TAKE NOTES DAILY, and all your yesterdays will improve! It won’t seem so bad when you read your notes (if you remember too), because you’ve been through it already!
Related articles
- Brainline.org, TBI, Brain injury, brain damage, Marcus Rosenberger. 8/2/12, if only we had known all this information when Marcus had a brain injury. We felt so all alone… (realestatesavant.wordpress.com)
- Resources for those with traumatic brain injuries (dvidshub.net)
- Effect of slosh mitigation on histologic markers of traumatic brain injury. (zedie.wordpress.com)
- Halle Berry Released from Hospital following Head Injury (celebs.gather.com)
- Duke researchers look to World War I soldiers for clues about traumatic brain injuries (newsobserver.com)
braininjuryselfrehabilitation 
Big Mike's World
September 28, 2012 at 12:15 am
There seems to be a very thin line to balance on trying to figure out the right mixture for each day to just function. Thank you for sharing. The author, whos stories I help with, had a brain injury and she never talks about it. She did however just finish a book about it. But by reading your blog you help me understand some of the things I come across with her. I now know she is not just being difficult but sometimes it’s just how she funtions. I hope that doesn’t sound insesitive…?…. I have never personally encountered someone with these obsticles before.
brain injury self rehabilitation (BISR)
September 28, 2012 at 10:57 pm
Thank you for understanding. I rarely talked about brain injury (except a few very close relations) until 2012, two decades later … and now I will talk and write about so others will learn. Otherwise, if I don’t speak up others may not be helped or heard and even more won’t understand. No one with brain injury purposefully acts out, every day is unpredictable. There are generalizations, but that’s quite a wide range. We aren’t people “using it”, “malingering”, or “milking the system” … we’d rather be like we were “before” so we just struggle to get back whatever we can! It’s not about feeling bad for another, but understanding … and you are understanding!
I’m happy another book will be published about brain injury. I hope you can provide the title in the future. I once contacted a ghost writer, but again I didn’t follow-through. It’s hard to keep my thoughts on track. I wonder if she had the same difficulty?
I appreciate your comments. Take care and stay safe, Edie
Madelyn Griffith-Haynie, MCC, SCAC
September 29, 2012 at 4:13 am
@BIg Mike – what a blessing you are to embrace “what you come across with her” through a new understanding of what she deals with. You sound, TO ME, the opposite of “insensitive” – you sound caring and wonderful to attempt to understand the obstacles she deals with — and now, thruogh her, so must you. I think you are brave to speak your truth. Thank you.
Madelyn Griffith-Haynie, CMC, SCAC, MCC
-ADD Coaching field cofounder-
blogs: ADDandSoMuchMore & ADDerWorld – dot com!
“It takes a village to educate a world!”
brain injury self rehabilitation (BISR)
September 29, 2012 at 7:52 am
@Big Mike is caring, compassionate and understanding. I totally agree with your comments! Too bad this world doesn’t have millions of @Big Mike’s!
Madelyn Griffith-Haynie, MCC, SCAC
September 29, 2012 at 2:03 pm
You got THAT right! (and big “Micheles” too!)
xx,
mgh
Laurie FourPaws
September 28, 2012 at 11:48 am
Great useful advice! Glad to hear this crisis is past now. I continue to be amazed how positive you remain. Thank you.
brain injury self rehabilitation (BISR)
September 28, 2012 at 11:32 pm
Do you find the same difficulty in trying to problem solve symptoms as I do?
Madelyn Griffith-Haynie, MCC, SCAC
September 29, 2012 at 4:21 am
DUH!
The thing that the “vanilla brains” don’t get (until something happens that does not allow them to continue in blissful ignorance), is that we ALL have difficulty trying to problem solve symptoms, regardless of the source. I have spent my LIFE in that endeavor – and sometimes I wonder if I understand much at all. What’s our alternative? If we’re sane, we keep on keeping on.
I SO admire what you are doing with your life. You make some mighty tasty lemonaide, Lady, out of some mighty sour lemons.
Thank you SO much for you tribute to Kate, btw. I’ll be linking.
Madelyn Griffith-Haynie, CMC, SCAC, MCC
-ADD Coaching field cofounder-
blogs: ADDandSoMuchMore & ADDerWorld – dot com!
“It takes a village to transform a world!”
brain injury self rehabilitation (BISR)
September 29, 2012 at 8:00 am
How do we know how those little bumps and bruises might have affected those. I believe it’s all a type of brain injury of some sort. It really doesn’t matter how, but why the world is so hard and everyone is expected to fit the “mold”.
It’s been a joke for years how my oldest brother took me out of the crib as an infant and dropped me on my head! lol Just ironic! Maybe my determination started then when I couldn’t get out…I just needed to do things on my own and be safe! LOL We just met up recently and he reminded me of that, but it’s all good now!
I’ll be watching and helping as others struggle through the aging process as we’ve mastered things a lifetime!
Thank you for your kind words. I wish I had the opportunity to meet Kate, but her work isn’t ongoing in her memory.
Take care and stay safe, Edie
Madelyn Griffith-Haynie, MCC, SCAC
September 29, 2012 at 3:09 pm
What we [think] we understand NOW about those bumps and bruises when we are little is this:
our brain “heals” extremely quickly in “building” brains — so even intense damages RARELY have lasting effects (caveat: in enriched environments).
As we age, it is our brain that gets “set in our ways” – what we call “neuroplasticity” slows down dramatically. That means many things, but two that are key involve neuronal growth and neuron “reassignment.”
ie: neuron “recruitment” is slower, BDNF supplies are lower (neuro-“Miracle Grow”) — AND our psychological resistance to continued effort in the face of “failure” is higher, which stresses the amygdala, which shuts down cognitive functions (especially executive functioning), so our brains get “fuzzy” and “fuzzier.”
BDNF (brain derived neurotropic factor) is increased with exercise, btw – but bodily injury usually accompanies brain injury, so at the time our brain needs it MOST, we are least likely to get it! AND, as we age, we get sedentary – BAD idea for brains.
The GOOD news is that many pharmaceuticals increase BDNF (lithium, depakote, SSRI’s – a lot of psychiatric meds), learning new things – all increase BDNF, even stress increases BDNF, but exercise is the queen.
There are mitogens created in response to muscle break down and repair that impact brain functioning positively (preventing cognitive decline — encouraging growth and repair).
THEN there’s HGH release with anaerobic exercise (human growth factor that we don’t produce into adulthood) – and SO much more. Bottom line: we are evolved to MOVE – even if we can’t do enough for long enough to change our bodies, we do our BRAINS a big favor the more we move.
NOW, how do we “make” ourselves DO what we know?
xx,
mgh
brain injury self rehabilitation (BISR)
September 29, 2012 at 4:23 pm
Exercise is the key to my existence. Even when I only had 4 hours of energy every day, and couldn’t exercise on land I drove for warm water exercise. Who wants to “not move”? Maybe that’s why my brain kept repairing. I think if more people realized how much better they feel walking and exercising it wouldn’t be a problem for our society. Water doesn’t seem like exercise, but walking can sometimes be exhausting. I’d rather walk then be in water but at least I have a choice now.
Who wants their brain to get worse? Time we close 90% of dementia units, and take responsibility for keeping our brain healthy. Keeping mentally active and physical exercise may help close these units. Reading, learning, board games, computers, and jump in the pool and take walks! It’s a mindset, and time to reset the mindset. I won’t be the one with dementia, and those I know who either!
There is so much more education about exercise, nutrition, and brain health. I’m thinking the pendulum will swing the other way and people will see and feel the difference to make the change.
Madelyn Griffith-Haynie, MCC, SCAC
September 29, 2012 at 5:06 pm
I wish I shared your optimism . Sorry to sound like a downer, but my fear is that we won’t see much difference until and unless the MEDIA gets on the neuro-bandwagon (which includes getting OFF the Luddite “don’t take meds – the hoax of Big-Pharma” sound-bite trail – because some people *need* them – not “instead,” but in combo)
But hey, their bosses are capitalists, and controversy creates the sound-bites that attract the listeners and readers who buy the sponsors’ products, which attracts more advertisers who are willing to pay more to reach those listeners and readers – and the beat goes on – as MOST Americans pay with the quality of their lives (if not their VERY lives!)
UNTIL we reach and inspire voices in the numbers needed to rattle the cages of the politicians necessary to make the laws to increase funding for PE, arts, music, drama etc. in our schools once more (beyond boy-sports, which don’t even include all the BOYS!), and to fund research initiatives to the level of “The Decade of Brain,” – the NINETIES, btw – I no longer believe we will see societal change.
WHY the increase in “mental illness,” obesity, diabetes, and the decline of American brain-power needed to compete globally? DUH!
How BAD to things have to get? Who knows?
But I’ve spent one quarter of a century in every single day “rally the troops” advocacy efforts from every point-of-view that occurs to me — with such tiny ROI that I wonder some days why I bother — and whether I’ve wasted my breath and my life.
Anyway, I’m off to a Street Fair for a little life balance and a hit of feel good. No more work TODAY!
xx,
mgh
brain injury self rehabilitation (BISR)
October 1, 2012 at 12:18 am
It’s people like you that make the difference! Determined to push ahead, and never let the real issues die!
I’ve seen both sides of the pharmaceutical issues. Ultimately, the people need to take charge of their health and life, but they go about days “business as usual” unless they stumble and fall into the healthcare system. Unfortunately, a pill is expected to solve everything!
Medication does work, but it works best if the patient figures out their own body chemistry and that is extremely difficult especially when more then a couple medications are needed to control health issues. People are helped and harmed by medications. People are over-diagnosed and under-diagnosed. They are over-treated and under-treated. Yes, people die because of this…and frequently! I think we need to know what works and what doesn’t for ourselves and not to question our own intuitive thoughts.
People don’t get health until they totally lose it! I totally agree that decline in brain-power could spell disaster! I have another theory of brain power decline. I believe it’s related to untreated and undiagnosed conditions such as ADD/ADHD, brain injury, etc. and NOT Alzheimer’s.
Only when celebrities incur a problem does the media get the attention! That’s the only reason TBI has been in the media. It’s not new, but advances have been so slow … a snail’s pace! The obvious brain injuries have been treated for a very long time! Dr. White from MetroHealth in Cleveland, Ohio has been a pioneer in brain surgery some 40-50 years ago.
When it becomes an epidemic it will definitely get the media’s attention, and we’re not that far from that happening!