Sleepless in Salem — Life After Brain Injury

Sleepless in Salem — Life After Brain Injury

A bit like a luxury car, traumatic brain injury comes with a full complement of accessories. Not accessories like heated leather seats or a fully decked out sound system designed to sweeten your ride. Rather than making the journey more comfortable, traumatic brain injury accessories can add more bumps to an already difficult ‘life commute.’ 

The traumatic brain injury I sustained in 2010 when a teenage driver and I met by accident was just the beginning of the strangest chapter of my life. Sure, I had a few broken bones. Who wouldn’t? Getting t-boned by a speeding car can do just a bit of damage. Lacerations and bruises healed over time, as they should have, but it's the hidden injuries that can make life today more challenging than most will ever know. Invisible disabilities are like that.

PTSD and I have been in an ongoing relationship since the first day of my new life. I write quite a bit about this ever-present life companion. PTSD is not my friend, never invited and always showing up at the wrong time.

Let’s talk about sleep, shall we? Perhaps it’s better to call it what it is: the lack of sleep!

Every now and again, someone will ask me how I’m sleeping these days. My reply has remained unchanged for several years. “I’ve not slept a full night since 2010.” Every time I hear myself — in my own voice —"‹ acknowledge this hidden challenge, I marvel that I have made it this far.

My first year as a TBI survivor living with PTSD found me living with chronic and debilitating nightmares.  Ten to fifteen nights a month or more, I’d wake up screaming, covered in sweat, heart racing, eyes wide open and often arms flailing fighting off my nighttime demons.

Brain injury is a family affair, you know. Every night I woke up, my wife Sarah was pulled against her will into my nightmare. We both spent our days like a couple zombies from The Walking Dead. Sleep debt is like that.

Always one driven to find solutions, I went on a quest to find a solution to my sleep challenges. My neurologist strongly suggested a sleep study, but our high deductible insurance made that option unaffordable for us. When choices like paying for a sleep study or paying our mortgage come up, the mortgage wins every time.

Suggestions for proper sleep hygiene were adhered to with the strictest of diligence. No caffeine after 2:00 pm and no technology in the bedroom. I tried prayer, meditation, and melatonin. Nothing seemed to help my inability to sleep. A trip to a mental health professional specializing in PTSD produced no meaningful results.

I leaned heavily on those who said that time is my friend — that in time things would get easier. I had faith in their faith. Now, well into year five as a survivor, sleep issues still dog me. I am profoundly grateful that my evening night terrors have been reduced to three or four nights a month, but regular sleep still escapes me.

What has gotten just a bit easier is living daily with a head clouded by sleep debt. I got used to it. And on days when the cloudiness and weariness feels paralyzing, I try to remember that tough as it is, my fate could have been so much worse. I could have ended up in a wheelchair. Not everyone lives through the type of accident I experienced. I could have died.

Over time, I have come to find that the words shared with me early on are the truth. While bad nights still occur today, a measurable decrease in the number of tough nights has come to pass.

There was no magic bullet, no quick fix. I had to simply allow time to pass for my brain to continue its inevitable march toward the new normal of life after brain injury. I now see time as my friend. And I hold out a quiet hope that as the years go by, my nightmares will come less often, and maybe, just maybe, I’ll experience the blissful feeling of a night well slept.

Comments (12)

countless tbi's over the course of my almost 60 years .. the last 2 (that I recall) were in 1993 and more recently 22 months back in Sep 2014 ..
I have learned the #1 thing to have any sort of 'recovery' or peace while "working" to find Some recovery is REST. 
Up until my last setback in Feb of this year .. I thought "the brain is like a muscle .. it needs exercise to be healthy" .. I was so wrong..  Sooo wrong.. rest Rest and more Rest.. as much as you (I) Can..
I have come a longgg way in the past few months .. *Still not as good as I was before the setback in Feb (that was a direct result of me pushing it * So Please don't) ..
My "tools" are:
a FEW "Good" friends (many have understandably "had to" pull away) ..
Walks .. Slow .. walks in nature with my camera > it distracts me from myself and helps me be calm and patient *Key ingredients..
I also supplement with > Omega 3's, Feverfew, Ginko Biloba and Cal/Mag+D Vitamins .. *I'm confident the first 3 Are helping .. and the last can't hurt ..
I've also done my best in todays economy and living well below any "poverty line" to eat as healthy as possible .. No easy task on a limited income.. However, again I am fortunate to have a 'nature' connection and so I do forage for Some things .. :)
*I've found the greatest help for me in overcoming the emotional issues associated with this nastiness .. has been in finding that I Can use it.. my experience to help others .. *If nothing but "Listening" and Understanding .. because I Know how much those have Helped me.. to be Heard and Understood .. is such a relief..
Best to all enduring this tbi stuff.. Take it easy on yourself .. **Caregiver and tbi sufferer alike .. we gotta cut ourselves a little slack ..

I had a concussion 30 years ago after a fall.  I have not slept well (or thought as clearly as I used to) since then.  I will be starting neurofeedback soon and I hope it will help me sleep and function better.  It is very encouraging that others have had success with it.  By the way, for PTSD, a non-invasive psychological technique called EMDR can really help process and lessen the effects of traumatic events.  It is worth looking into for PTSD.  You can check out the EMDR Institute for more information.

My accident involved a 20' fall landing in the street with a 1400 lb horse on top of me. This was my 2nd TBI and I'm not a kid. I had PTSD, flashbacks and panic attacks at night,and bad sleep. I was told not to expect much recovery " at my age". I do neurofeedback for a living so I got to work. Four channel. . A newer format has restored cognitive,functioning from the 12th percentile back into the 90s. I sleep fairly well most nights. . No more panic attacks and my energy is almost back to normal since adding weekly B12 shots. Neurofeedback restored me after my first TBI too. Consider it. . But with a brain map (QEEG) and an experienced practitioner!

My TBI was October 2004. There are 3 things I know after 11+ years of learning about what we really happened to my brain: 

1.) we are all alive for a reason

2.) we must live with intent and in a smart manner (no risky moves, over boozing etc)

3.) JUST LAST NIGHT I went to bed at 12am and I was still awake at 5am. I had a choice to either spend those hours stressed, wondering, worrying or I spent the time reading about how to meditate properly and learn self hypnosis. 

**The brain is strong, and I always remind myself of that. I will use it find a peaceful night of rest someday, whenever the day comes.

I have had one moderate and two mild TBIs, and surgery for a brain aneurysm,  since 2006.  I now also have Chronic Fatigue and Fibromyalgia.  I feel sure these are offshoots of my brain injuries, and which, along with the TBIs, greatly impact my sleep.  I am fortunate to live in Colorado, where I can legally purchase Medical Marijuana (Indica strain.)  It is immensely helpful, and when used properly, gives me a good night's sleep with  no hangover in the morning.

Following the impact of my car with a median wall at 70 mph without airbag deployment, I initially believed the ER professionals that since the CT scans did not show a "bleed," I was going to be ok.  Looking back, I do not understand why I did not consider the laws of physics or gravity but will chalk it up to TBI.  What followed was a long, painful journey into a world of debilitating headaches; left-sided numbness; personality changes; low executive functioning; poor memory; verbal communication issues including word loss; chronic fatigue and pain.  No longer did I have the energy to enjoy the life I had once known.

It took nearly two years, to convince those around me that something was still not right.  Not until a sleep study, which was costly, but must say has saved my life by placing me on a road of recovery.  I am offering this story in the hopes of helping others that I know have suffered too.

 My sleep study revealed central sleep apnea and involuntary PLM (primary limb movement) which is a result of damage to my brain stem.  It makes restorative sleep impossible because the damaged brain stem no longer sends the proper signal to my lungs ordering them to breathe.  I too have been working through the PTSD but with proper sleep with the help of a machine that detects when  my brain fails to send the proper signal I now have a fighting chance at recovery.

Sleep deprivation, on top of all of the other challenges we face as TBI survivors, I believe, is one wall that can be torn down to better ones chances at thriving.  There is a reason sleep deprivation is considered an interrogation technique within military and criminal investigation practices: it is torture.  Once I recognized it, I was able to stop two-long-years of sleep-deprived torture.

We have to be our own advocates because we are the only ones in touch with our bodies if we take the time to listen and are  tenaciously demanding to be heard.  TBI can get us down but it does NOT mean that we are OUT!

NEVER GIVE UP!   

After my car crash in 1993 I suffer from bruxism (broke my molar twice) and OSA (confirmed by a respected Sleep Center). Fatigue is a no-brainer. Had EDTA chelation theraphy and even colon cleansing therapy for that. Tried everything and will try CBD oil if my budget allows it in the future. I am the same but different and still believe God kept me alive for a reason. I live with this injury and have adjusted to a day-time life less stressful and peaceful because at night-time I live a challenging life. We live two lives says a James Bond theme song. Keep fighting.

My TBI happened in early 2009 and 6 years later I still don't often sleep through the night. I don't usually get up, instead I try to lie in bed restfully, hoping that that will be mildly restorative for me. I don't take in any caffeine after 9am, and I usually get some exercise in every day, so trying to make myself tired to encourage my body to sleep, but doesn't always happen.  

I have lived with post concussion syndrome since a large man decked me during a non-contact hockey game (I'm a small woman).  I have struggled with sleep on and off since then.  I did have a sleep study done, and it was very useful, as the Doctor immediately recognized that I had a brain injury (it was the first test which actually confirmed post concussion syndrome;  MRIs etc. were all normal).  I was put on a low dose antidepressant to help me sleep which has been great.  However, when symptoms flare up (they are always with me but when I get overtired or overstressed they get worse for a while), my sleep again suffers.  Some nights I hardly get any sleep, for three or four days at a time.   It's really wearying :).  It is helpful to hear that I am not alone though, and this website has been very helpful for that.  Thank you.

My TBI was in March 2012  I was a great sleeper until then. When I'm awake at 3 or 4 am ( even on sleeping meds) I take comfort that you too and many others are awake as well. I take great comfort in knowing there are others out there with the same issues. Thank you for sharing.

I am in year 11 as a Severe TBI Survivor and while I have NEVER had a restful night since the accident, I love the mindset you have!  Someone ALWAYS has it worse so I, as you, focus on that and deal the best I can.  Glad you saved your money on the sleep study!  It was useless!  Keep the faith!

I too suffer / suffered sleepless night as a result of a TBI.  I found that neurofeedback gave me some relief.  I was able to get a solid 3-5 hours undisturbed sleep and the rest of the night would be doing the fish out of water routine.  Over time i wwas able to go from the one good night to two / three not so good to the opposite now.  Sleep is the path to health as I have found. good luck to all