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Fatigue After Brain Injury or Anyone Suffering from Excessive Fatigue

10 Feb

Are you exhausted or constantly fatigued after brain injury? Anyone suffering from chronic excessive fatigue or exhaustion?  Is it “normal” or “excessive”? You might have an underlying condition that has not been diagnosed or treated yet.  10 Suggestions and more to help find your cause. Has it been a couple years since your injury and you just have NO energy regardless of how or what you try to do,  and you just cannot overcome the fatigue/exhaustion?  I spent 18 1/2 years of drop dead fatigue.  I could only do one thing in a day, it was a gift if I could accomplish more.

I never took one day for granted.  Every single morning I got up optimistic but it clearly was not under my power.  When I went to appointments or functions it would take me days to prepare for, and could be days to weeks to recover from one event.

Superficially I appeared “good” to the average person.  I never presented as though my life was torturous … and it was! If only people really knew what I was going through behind closed doors.  I want to open these doors so others can get the help they deserve and need.

It was such a challenge to physically walk into places. I was out of breath, constantly thirsty, and my legs were heavy. Aquatic exercise was my life, except the difficulty walking into and out of the facility was horrendous.

It was the aquatic exercise that most likely kept me alive.  For those that are wheelchair bound, you may also have something similar happening, but since you are unable to physically walk independently you may not see this as being the same problem.

Don’t minimize!  (I did for years and it got me nowhere.)  I highly encourage anyone having issues with daily living, lack of energy, and excessive fatigue to have a full evaluation.  Expect that your healthcare provider will tell you that “everything was checked out”.

With this response ask for a printed copy of all your blood work and all your medical records.  They are your records and you should keep them.  They are usually purged every ten years, so if you need them later they may be gone.

Get another opinion and make sure they are correct.  You should be free of all these symptoms.  You have a right to Live…and not just Exist!

On a daily basis, within a couple hours I could not do anything. I had no physical energy left.  I could hardly think either, but with a room free of distractions my mental abilities improved and I typed on my laptop to document this journey.  

I guess I was hoping someone would care enough to help me or resolve what was happening when my body would finally give out…but I doubt that would have happened.

Healthcare professionals would not face the truth!  They would blame it on the patient. Now, who will tolerate that?  I did only because I knew I was right and I felt their was some help out there.

I believe in the power-of-prayer, but I must admit their was not much in me to survive longer when I finally met a genius in the field of medicine.  Yes, I’ve always been stubborn that being a good attribute during this time.

This was a difficult road to haul when I’m facing all these professionals that simply were not listening.  Of course it was at the expense in every way …  of my family and I.

In addition besides the lack of treatment and the daily struggles I have endured slander, liable and my character defamed through false allegations all at the hands of healthcare professionals and the worker’s compensation system.  All this because of misdiagnosis and the invisible injury; but now I can help others with my new-found energy.

I am grateful I did not see my worker’s compensation file until 2011. I wonder if this is even legal to have such devastating things documented that only supported the system and not the person and such false documentation?  It’s still a question I have, but don’t know where to turn.  Of course with my medical file now it is contradictory.  If you have any suggestions or answers let me know.

What I know, I did not have enough energy to waste on nonsense.  I will sometime in the future put this file on the internet so others know what to expect and help prevent this from happening to them.  With all the negative publicity about people putting in false Worker’s Compensation claims my heart goes out to all those who never get what they deserve.

I truly believe there are more people injured that are not helped, then those who try to screw the system.

Unfortunately, my energy is still limited but I do have more energy now.  Before I was not able to function more than 4 hours every day for nearly 2 decades so I’m delighted and we have our life back.

Before I was just existing, now we can live again.  My memory and cognitive functioning also improved drastically.

  1. Have you seen an endocrinologist?
  2. Have you had extensive blood work done by an endocrinologist? I am not talking about your ordinary blood work performed for multiple reasons in medicine.
  3. This blood work is highly specialized and ordered by an Endocrinologist.
  4. Analyzed by this area of specialty medicine.
  5. Timing of this blood work is essential for the proper evaluation and analysis.
  6. If you have not been evaluated by an endocrinologist and have not had extensive blood work, please do so to help yourself.
  7.  I strongly suggest you start looking up someone who can help you.
  8. Ask a nurse for a referral or search the internet.
  9. Get an appointment as soon as possible. It may take a month or longer for your appointment.  It will most likely still take a couple of months before you can get the answers, and hopefully it will help find the underlying cause of your excessive fatigue.
  10.  Remember it is not in your mind…it’s in your head!

If you have seen an endocrinologist and still have the same symptoms you might want to get another opinion from another endocrinologist or ask your endocrinologist if they might consider repeating the blood work. There are always false-positives, hence a margin for error.

And there are those who will not spend the time needed to explain your fatigue issues. Search for the answers, and do not give up! It’s your life, and you are important!

Endocrinologists are highly educated, a well-respected discipline and they are in the best situation to assess, evaluate, diagnose and treat a chronic condition related to the brain functioning related to hormone imbalances, damage to the hypothalamus and pituitary causing system failures.

 Click on this link listing all the human hormones. Did you know if only one hormone is deficit it can have a ripple effect on other hormones causing serious effects and consequences on daily living?  Take a look at this comprehensive list of human hormones.

There is no routine hormone blood work completed for traumatic brain injury and it is unknown how many people are suffering from this.  Because of cost, the blood work for endocrinology is limited.

Someone is placing a dollar value on your life. By not doing this extensive and detailed laboratory work your life may not improve.  It did not for me, until it was done and I was treated.

My life has changed drastically.  I could have and may still be able to someday be gainfully employed.

Whatever I do in the future, I will continue to help others self rehabilitate from brain injury, chronic illness, and all the injuries those sustain in life as well as help our American Veterans recover to their optimal level of functioning.

I did not know anything about Hormone Imbalances prior to my diagnosis in 2010. If I did so many years would not have lapsed before my proper treatment. I was not and never will have the education in medicine, but I do know I am a compassionate person and want to educate and help others. Let me remind you I  was a high level functioning 38 year old when my injury occurred in 1991.

Where are all the hormones initially secreted that keep our body in homeostasis (balance)?… In the brain!  You would think that is a no-brainer!  The hypothalamus and pituitary are in the brain.  When these areas are damaged it causes your entire body to go haywire.

I am truly concerned that this problem is consistently overlooked and not diagnosed.  With further and extensive blood work so many other people could improve drastically, ultimately costing less in the health care dollars of America.

Over a long-term this would be a cost-effective move and I propose we get a movement for all traumatic brain injury patients and anyone suffering from extensive fatigue.  Who wants to live like that?  Then they wonder why suicide rates are so high?  This is preventable!

There is a difference from excessive fatigue and brain injury fatigue.  I am an expert on this since I spent 18 1/2 years with excessive fatigue, but now I deal with the “normal” brain injury fatigue.

I recently tried to chalk this up to aging process and the physician brought to my attention that he does not believe age is a cause.  He used this example: “When people complain about a leg hurting because of age…he asked “How old is your other leg?”  He had a point.

Hormonal_imbalances_after_brain_injuryThis is what I suggest if you see yourself in any situation like the following:

  • If you feel so exhausted that you cannot even answer the telephone or talk.
  •  If you feel that a raging fire in your residence still would not be enough to provide you with energy to leave.
  • If every day you have less then 4 hours of energy to get whatever you have to be done to simply exist.  This includes your activities of daily living:  bathing, dressing, eating.
  • This is a significant problem and there is hope for you!

Suffering from Severe Excessive Fatigue check these sites out on Hormone Imbalance. Let’s stop healthcare professionals from overlooking a significant injury to a vital part in the brain that destroys the lives of many people who suffer excessive fatigue, their families, friends and loved ones.  Yes, it is in your head!, not your mind!

Who would have ever thought?  We count on others helping us and it becomes a level of trust.  Believe me, no one knows everything so do not feel that you are hurting the feelings of your physician or healthcare professional.

They simply cannot know it all.  You can also fire them as quickly as you hire them as well. They have no problem dismissing patients.  You have a right to feel your best!

It is your life.  You  are a valued  human being.   I highly encourage you to check this out for you or your loved one suffering from excessive fatigue.  This has changed my life after suffering for 18 1/2 years…and it could change yours!  Don’t suffer any longer.

This is a very complex situation because hormones control everything and every function in our body.  I will give you links to read over, print off and take it to your physician.  If you do not have a computer available please get someone to help you.

This is a treatable problem.  It is not in your mind!  You are not malingering. These are scapegoat diagnoses instead of saying:  “I don’t know what is wrong”, “I can’t figure it out”, “I will send you to someone who may be able to help”, instead many healthcare providers just place blame and label patients.

Our healthcare professionals have failed to find the true cause, and hence your life is on hold at the lack of knowledge or the inability for people to look outside of the box.  Misdiagnosis are detrimental to your health and life and is passed from one physician  to another physician as well as  other healthcare providers.

It takes a strong sense of self-confidence for a physician to go against what others have labeled and search further and listen to the patient instead of his colleagues.  You can be treated and get better.  Do not pass this up, if you are suffering from this excessive fatigue.

The following are some Links to Hormone imbalance with hypothalamus and pituitary dysfunction after brain injury.  These are not all inclusive.  Please search further to help get better.

http://www.worldhealth.net/pdf/Gordon_Thera10.pdfhttp://www.headway.org.uk/hormonal-imbalances.aspx

http://www.headway.org.uk/hormonal-imbalances.aspx

http://emedicine.medscape.com/article/326123-overviewhttp://brainandspine.titololawoffice.com/articles/brain-injury/effects/

http://books.google.com/books?id=ItibfXy9YUIC&pg=PA39&lpg=PA39&dq=chronic+hormone+imbalance+after+traumatic+brain+injury&source=bl&ots=2_j6PwjoJ2&sig=9ZHQx4iicnCZ2jcB2FIP8Gbv9KA&hl=en&sa=X&ei=UE0tT7ejAdTh0wHuq7GfBA&ved=0CGMQ6AEwCA#v=onepage&q=chronic%20hormone%20imbalance%20after%20traumatic%20brain%20injury&f=falsehttp://www.mendeley.com/research/adrenal-insufficiency-following-traumatic-brain-injury-in-adults/

 

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31 responses to “Fatigue After Brain Injury or Anyone Suffering from Excessive Fatigue

  1. heidirmoore

    February 13, 2012 at 1:21 pm

    Wow, what a powerful post — and so true…actually, any catastrophic injury to the body can cause a hormonal imbalance, particularly adrenal insufficiency, which causes terrible exhaustion–the very way you described in the beginning! I couldn’t stop sleeping. I saw every kind of doctor, even a (not very good) endocrinologist, but no one thought of testing my adrenal gland; apparently, adrenal insufficiency is uncommon. Eventually, I saw an infectious disease doctor for another issue, and when I told him how exhausted I was, HE was the only one who listened and was actually smart enough to administer the proper test. It’s amazing how hard it is to find someone who will listen. Once I started taking the right medication, my whole life changed for the better. I’m a new woman, with enough energy to do one thing a day–AND stay awake long enough to paint a picture or work on my blog!

     
    • brain injury self rehabilitation (BISR)

      February 13, 2012 at 3:40 pm

      I am so sorry to hear about the difficulties you also endured. Patients are often looked at as being: female? nurse? hyperchondrical? neurotic? depressed? anxious? malingering? all of the above and a number of other verbs, instead of looking for the real problem and hence they suffer and everyone around them. It’s so sad that the problems we have in our healthcare system are serious and numerous. I hope others who are suffering severe fatigue will search out further … but they may not have the energy to either. Therefore, suffering may continue for years on end … until someone intervenes or advocates for them. A prayer for all others suffering and not yet diagnosed with adrenal insufficiency or growth hormone deficiency and so many other hormonal imbalances. Is this really rare or more common then we think and it’s just misdiagnosed with the above listed diagnoses?

       
      • philippinewanderer

        December 6, 2012 at 11:33 pm

        Hi Edie…I , at one time, noticed an endocrinologist office across from the local library, so I phoned to make an appointment for the following day. The busy Dr. saw me for fifteen minutes to say he couldn’t help me and he gave me no alternatives. His cost for those fifteen minutes were over three hundred. Well I drove there again only to dispute the bill; you know how far I got, right? I have been tired, excessively tired, for twenty-five years now.

        Did I ever mention how my right arm has been tingling for the same amount of time; it feels like it’s asleep. People tell me how lucky I am to have lived and with all limbs. But my arm and leg on the right side are just heavy appendages I must drag with me everywhere I go. I really wish I had died.

         
      • brain injury self rehabilitation (BISR)

        December 8, 2012 at 7:42 am

        Hi Steve, So many healthcare professionals don’t understand TBI, it’s a complex injury, and no one wants to take the time! It’s their job! We’ve all drained finances to pay for services not rendered. I’m working closely with people to help change this, and so are you. Everyone who gets their story out there will help others succeed and understand what is happening. We are all making an attempt to help others even if it’s in the simplest of ways. I’m trying to compose a list of Endocrinologist that know the proper and extensive testing to help TBI survivors improve, especially with the energy, fatigue issues. That will be coming up in future posts.

        It is difficult to deal with tingling in all the extremities and the heaviness. I came back in tears last night and could hardly walk to the car. I thought I was doing excellent but I never tried walking in the cold! It didn’t work, but now I’m reminded that I wasn’t better from spinal cord injury … but I can walk! Yes, I have experienced similar situations and I would never do it again … but since I’ve survived I’m looking for my purpose on this earth. You are helping me understand I’m not alone and regardless of how hard we try we still deal with deficits … but through our spirituality and persistence we still take care of others. You are the most significant person in your daughter’s life, and where would she be without you? She’s so fortunate to have you, and she knows that … and she really doesn’t know you any other way … She loves you for who you are today, and not who you were.

        Thank goodness you have that inner strength to share all you’ve been through, helping others, struggling with the injustices of our healthcare and legal system. We are learning through your experiences. What do you find as most valuable experiences and information you’ve learned from your TBI?

         
  2. Anita Mac

    March 7, 2012 at 7:22 pm

    Lots of information there – not sure if I could take it all in! Luckily, I don’t think my exhaustion is as extensive as what you describe. I am just over a year from my accident (double skull fracture). We went the way of looking at thyroid function – blood tests were mostly normal, with one that was not. Then came the endocrinologist who suggested perhaps I was narcoleptic! Not sure where he got that – I must not have given a clear description of my issues. I suggested that I found I got so tired that I could not drive the distances that were required for my job – that I would find a grocery store parking lot to have a nap before continuing on the highway! I never said that I would not be able to stay awake, and fall asleep behind the wheel of the car. I would like to think I have more common sense than that!
    The constant fatigue is a problem – I have adapted ways to deal. I schedule more rest stops along the way! I hope, as time progresses, I will be back to doing the crazy things I love to do (hike mountains, cycle across countries, learn new languages enough to travel in new countries and really experience the place….) Will look further into the adrenals – have been thinking along those lines for some time now…..even considering switching to a naturopath – the conventional methods seem to be letting me down!

     
    • brain injury self rehabilitation (BISR)

      March 8, 2012 at 7:59 am

      I also believe the traditional medical treatment is letting most patients down. A naturopath is a good alternative. I’ve tried many that are helpful a few are: Reikki, Yoga, Tai Chi, Pilates, etc. If traditional medical treatment was so effective it would not have taken me 200+ physicians to find an obvious problem. I could see several physicians to diagnose hormone imbalances after TBI, but not over 18 1/2 years with 4 hours maximum every single day. I only hung sheer determination knowing I was right. I wish I had the where-with-all to see endocrinologists & demand treatment and further investigations. TBI has not been taken seriously. I’d encourage you to have the extensive blood work that includes IV injections to see if your hypothalamus with growth hormone/pituitary are responding. Links on this site may help. Adrenals for energy are extremely important as all hormones are. Bodies don’t work without hormones. Every TBI patient should undergo extensive testing no longer than 2 years after injury. No one wants to go through this for 2 decades. Keep on Biking and Traveling!

       
      • Anita Mac

        March 11, 2012 at 9:39 am

        Thanks – I hope to keep travelling, biking and pushing through! It is hard to get a lot of tests done – one physician did some extra tests and the report came back with a message that they should not be doing this test without certain other parameters being met first! We will get there!

         
      • brain injury self rehabilitation (BISR)

        March 11, 2012 at 7:32 pm

        Don’t give up. Keep pushing to get the quality care you deserve.

         
      • Paty

        June 5, 2012 at 3:30 am

        I’m male, 25 old, ectomorph body type with caisslc seer’ constitution. Sensitive to stress, stimulants, stomach gets upset/nervous easily etc.Over the past 5 years, due to consistent work stresses and not enough play, I’ve become burn out and have developed many symptoms of hyperthyroidism and adrenal fatigue (sleep problems, overall depression, feeling drugged/weak/dopey and times, brain fog, hot body temp sweat easily, lower than normal testosterone, DEHA, progesterone and erratic cortisol levels throughout the day). In addition to lifestyle changes I’m making, I wish to get advice on supplements(s) that will help my body naturally restore itself. My preference is for things made from whole foods and herbs.I’m currently just taking:1 Multi Vitamin/Mineral (by new chapter’)1 Salmon Oil (1000mg)2 B Complexes (by megafoods’)Extra Vit CAnd I’ve begun drinking 1-2 cups of ginko tea daily and a lemon balm or peppermint tea in the evening.I wish to try a herbal formula and perhaps an adrenal gland extract. Can anyone recommend a good herb formula that isn’t too stimulating but will build up my adrenals and balance my thyroid?I’ve tried maca and panax ginseng, both made me feel better at first but then I overheated and became jittery.I feel I may tolerate Siberian ginseng better and have never had problems with ginger and cayenne in my food. So was considering Dr Christopher’s containing:Mullein, Licorice, Siberian Ginseng, Gotu Kola, Hawthorn, Lobelia, Ginger Cayenne.Any suggestions would be very appreciated. I don’t have a herbalist or natrupathic doctor where I live.

         
      • brain injury self rehabilitation (BISR)

        June 5, 2012 at 8:18 pm

        I wish I could help you but I don’t know of any herbalist or natrupathic doctor. Sounds like you have an array of knowledge in this area. I’d highly recommend the natural healing remedies and it’s difficult to find the exact remedy for oneself, it’s a trial-and-error and takes time to find the exact match for an individual. Wish you best of health always.

         
    • heidirmoore

      March 8, 2012 at 10:42 am

      I suffered for a long time after my aneurysm. I literally could not get out of bed. All the doctors just dismissed me with the CFS diagnosis (which to them is tantamount to saying “you’re bananas”) until a really great doctor asked whether anyone had tested my adrenal glands. He pointed out that anyone who has had a severe trauma has a tendency to have adrenal insufficiency–which can be fatal. When I was tested, my level was 0.2 (normal range is — between 7 and 20). This is often overlooked, even by endocrinologists! So ask for a test of your adrenals.

       
      • brain injury self rehabilitation (BISR)

        March 8, 2012 at 7:32 pm

        OMG! Adrenal insufficiency can be fatal. I get what you’re saying about not being able to get out of bed. REQUEST SPECIFIC BLOOD WORK FOR ADRENAL INSUFFICIENCY if you had TBI and are FATIGUED! It takes a great doctor to know this or look for it…and that’s hard to find! There is no reason for this. The patient is always to blame. The blame lies in the hands of professional. They are the ones who lack knowledge, patience, and understanding. They chose the path of career, but it’s sad who suffers because of this. Why pay someone for services that we never get? Why is our insurance paying out? If the healthcare professionals don’t do their jobs, they shouldn’t get paid! Thank you for sharing. Are you doing better now?

         
  3. Vickie

    August 7, 2012 at 11:08 pm

    Great article. You do have to be your own best advocate!

     
    • brain injury self rehabilitation (BISR)

      August 10, 2012 at 8:23 am

      You have been through so much recently with several CSF leaks! It’s amazing you have survived but you as your advocate traveled from Florida to California to get urgent treatment …and you are alive! “Gizmo” (dog) is helping with your recovery as you learn to walk again. I encourage others to check out your site at realeastatesavant.wordpress.com I meant to reblog your last post, so I’ll go back and do that! Take care and stay safe.

       
    • brain injury self rehabilitation (BISR)

      August 10, 2012 at 8:23 am

      You have been through so much recently with several CSF leaks! It’s amazing you have survived but you as your advocate traveled from Florida to California to get urgent treatment …and you are alive! “Gizmo” (dog) is helping with your recovery as you learn to walk again. I encourage others to check out your site at realeastatesavant.wordpress.com I meant to reblog your last post, so I’ll go back and do that! Take care and stay safe.

       
  4. craiglock

    December 20, 2012 at 2:09 pm

     
  5. Cauldrons and Cupcakes

    March 23, 2013 at 2:19 am

    What a fantastic post – and so supportive and affirming for everyone with a brain injury who ends up thinking their fatigue and other symptoms are ‘all in their head’. Sending you the biggest of hugs and a thank you for all you do as an advocate and support for others. Bless xx

     
    • brain injury self rehabilitation (BISR)

      March 25, 2013 at 8:21 pm

      I appreciate your comments and I’ll take the hugs today too! I recently heard of someone having the same fatigue problems after cancer treatment that caused the same neuroendocrine problems that happen after brain injury. Take care and stay safe, Edie

       
      • Cauldrons and Cupcakes

        March 25, 2013 at 8:31 pm

        All that toxicity in the body – it’s no wonder!
        More hugs and love for you, and thanks for all you do Edie xoxo

         
  6. Phil Doherty

    March 26, 2013 at 1:52 pm

    I was delighted to find your post as I am 4 years post brain injury and surgery and to try to resume a normal life again, rather than sitting on a couch,I started to exercise in a ladies gym within the last 6 months. I pushed myself but eventually just crash with muscle weakness ,dizziness,vertigo and it takes weeks to get back to what is now “normal”. I identify with everything you post about the unbelievable fatigue and only managing a few hours a day. I have tried positive thinking, denial, I appear perfectly healthy so I get no moral support as people tell me I look fine or it is age etc… I have become frustrated and wonder how many more days of just existing I can endure but your post gives me some possibility of help with the exhaustion. I will start searching for a doctor who has some knowledge of brain injury. i love idea that it is not your mind but your head, in fact everything is actually in our head!!Thank you very much.

     
    • brain injury self rehabilitation (BISR)

      March 30, 2013 at 6:23 pm

      I sure do understand … I tried everything including personal training and nutrition courses (thinking I didn’t know what I was missing), reikki, tai chi, yoga, prayer, and nothing changed. You will get better, but it’s probably some missing brain chemical that has not been identified for you yet. I do know searching for Physical Medicine and Rehabilitation (Physiatrist not psychiatrist!lol) specializing in brain injury or neuroendocrinologist would be helpful. Let me know how things work out and ask any further questions if you like. I’m interested in knowing how you are doing.

      It’s especially troublesome when expending all your energy taking care of yourself, there is little left for appointments that get one no where. Take care and stay safe, Edie

       
      • jack

        October 9, 2013 at 6:58 pm

        oh yeah what did you mean by “prewired” in context of language and a newly acquired one after a brain injury?

         
      • brain injury self rehabilitation (BISR)

        October 15, 2013 at 9:35 pm

        I tried looking it up but can’t find where I used it but I know I have. I use this term “prewired” as how the brain was prior to injury. Following injury it’s as though we must learn how to live in a body that is controlled by a brain that works totally different … life becomes unpredictable simply by an unreliable brain and body. Our minds are the most reliable, but others may not think so … only if you’ve been down this journey would one understand.

         
  7. jack

    October 2, 2013 at 3:24 pm

    Yes, I also related to everything said here. My situation was/is very difficult for even the most dedicated and sincere physician. It was most unfortunate for me that I had also suffered from severe depression before my tbi because that helped doctors to overlook the second and ultimately most important reason for my fatigue.

    Also, unfortunate for me was the jock mentality to not complain and to keep fighting. It is very important to COMPLAIN in the right way and to the right person. Ironically, it was not until I self-medicated (that ultimately ended disastrously as well) did I see my life for what it was and was able to process a prior identity and relate it clearly to the time of my tbi.

    It is not easy to complain about something that not even the sufferer knows exists. I wholeheartedly agreed with my diagnosis and to a degree they had it half right. But something was totally overlooked and much of that was do to the idea that I am “intelligent”.

    In 1990 after the TBI I picked up a foreign language very quickly and I know without a doubt that I could never have done that without the injury. I even dream and sleep talk in that language still at times even though I hardly ever use it. It was my basic soul that carried me through and it was that which confused professionals.

    Also I was 3000 miles from home without anyone who knew my prior personality and degree of functioning. Only the most observant and incidentally most often not the most educated, picked up those subtle symptoms of TBI that go unnoticed.

    The “uneducated” seemed more aware that something was not right with me. Even those who were most helpful did not know that the problem they were addressing was not the problem they had thought, nevertheless, patience and love, go a long way treating any condition or any person for that matter.

    In the end, I “acted out” on the professionals who were treating me and rather than admit ignorance, I believe, although I cannot prove that they labeled me a malingerer or a narcissistic personality or even a sexual deviant.

    I only came to that conclusion because people at work and other professionals started to mistreat me. TBI is very difficult to diagnose especially when the patient has no current documentation because it happened so long ago and treated at a facility that is now closed.

    It was only when I started to get better and the use of self-medicating that I put the pieces of the puzzle together, I am now 50 year old man and now I have no faith in the medical system and still have to deal with the subtle symptoms, the lethargy, and the isolated life.

    But I know longer accept all the blame as I once had. I know the truth and that has to be good enough for me. Thanks for your post. Sincerely, JF I forgive as I hope to be forgiven for what is true and most importantly even untrue.

     
    • brain injury self rehabilitation (BISR)

      October 8, 2013 at 11:25 pm

      You’ve shared an abundance of personal situations that happen with TBI and I certainly appreciate it. First, your change in language is very interesting and I’ve personally seen that while I was working before my TBI.

      That’s unique to a specific area of the brain when injured, but it’s most likely a combination of how we are “pre-wired”. It’s definitely a fascinating change with injury yet understudied and ignored. It will be a life history like yours that will help solve the mystery of our brains.

      Many times the subtle problems will be observed by the “uneducated” and all too often dismissed by the “educated”. Do you think these symptoms of TBI simply don’t have meaning to many unless it’s happening to them?

      It’s dangerous to diagnose people as “malingerers”, “narcissistic” or “sexual deviant”. For each one of these there are symptoms and treatments as they are related to TBI or Chronic Illnesses.

      One example many neurobehavioral changes fall under the Kluver-Bucy Syndrome (KBS) yet they are treated with psychotropic medications such as for depression that can make the brain injuries worse.

      Now there is much more research on mild brain injuries. Unfortunately “mild”, “moderate”, and “severe” is still very subjective even though they have the Glasgow Scale. I say that because many do not receive treatment, and for those that do … it’s long after the initial injury (even if it’s just days or hours). Many of us try to keep going so who really knows when you are unconscious after injury if you are at home alone?

      We all react differently. Some seek treatment for everything and others keep pushing on … and that makes it very difficult to understand TBI simply because every injury is different, as well as our personalities … such a complex injury that no two are alike!

      Thank you for helping to uncover the mystery of our brains and being an active advocate for those who will involuntarily take this same journey. Take care and stay safe.

       
      • jack

        October 9, 2013 at 6:47 pm

        Hi Edie, I appreciate your comments. *Do you think these symptoms of TBI simply don’t have meaning to many unless it is happening to them?” Yes!

        And they did not even have meaning to me until I started to understand them and see how much they impacted the course of my life.

        it is very difficult for “professionals” to sort out what is what, when you have someone presenting with such an assortment of issues and in an inconsistent manner especially if they have added alcohol abuse at one time or another. The hardest area for me was/is this sense that I have lost a huge part of my identity.

        For example, before the injury, I was shy but had a much better grip on how to talk to people and to understand gestures and tones of voices even though I had shown signs of aspergers/mood disorder before the brain insult. I also lost interest in things that had mattered to me-

        I was very into soccer and skiing but for at least one year I gave no or very little thought of these things. Yet if someone kicked me a ball I could handle it in such a way that the other would be wondering why I had never told them of my past playing the game. But I had very little emotion or motivation attached to it. Same thing for my family.

        I knew people for long periods of time after my tbi that had know idea that I had 6 siblings because it never occurred to me much to see them or even talk of them. Yet, I presented as very normal in many ways and still do.This was a major problem for me in the aftermath of my unconscious state and apparent seizing of some sort for almost 3 days.

        I walked away from all that and never integrated effects of that hospitalization it into possible symptoms of present. It is highly subjective, as you allude to, and if the sufferer is ignorant to cause/effect of “mild” or “serious” TBI on level of functioning, the individual will not present the needed information especially if they have ptsd associated with it. Therefore I could not really blame the medical professionals that dealt with me.

        They saw the depression and fatigue as the major symptoms and the isolation. Unfortunately, I was unable to understand which professionals sincerely were trying to help me and which ones had thought I was playing games or looking for attention. I ended up continuing to see a therapist who had me labeled with borderline or narcissistic disorder but I could not understand for I had no “theory of mind”.

        This proved disastrous to me and as I suddenly became aware of how I was being viewed. (I was the last one to know) I acted out and then this hurt me more as they pointed and said “see, what I told you” and then those who sincerely were addressing my issue of depression, got on board with that therapist and I started to get ignored and I was so frustrated because I could not understand their sarcasm and views until it was too late.

        The whole thin baffled me and when I asked for clarification, I heard more of what was most like sarcasm, the doctor who saw me back into the work force and showed the most empathy when I asked him what was going on, he said “I forget”. I left and never returned because I could not understand anything.

        That was over 8 years ago and now I have given up almost and will only see a private doctor and pay from pocket and even though I am eligible for medicare. I see clearly how some of these vets end up homeless. So much misunderstanding. I now learn to ask people to speak slowly and to repeat and to clarify even if they think I am an idiot of a person of some sort.

        And I never react to any perceived meanness or mockery because I have staring spells. I stop going into the public. Just to a church. Fatigue, depression, and worsening memory problems are still my number major problems as are the PTSD symptoms- hyper-vigilance and nightmares. Almost worse is the stigma.

        It seems that people mistaken islands of intelligence as someone who is capable to get along in this world.
        People think that I am “smarter” than I am because I still can be very rational and with islands of excellent memory. But I feel very dumb especially for thinking that professionals would tell you in a clear way what they really thought of you after years of thinking that I was being well cared for.

        Your blog helps me to sort out my present situation and except life on life’s terms and not on how I would want the world to be. Jack

         
      • brain injury self rehabilitation (BISR)

        October 15, 2013 at 8:00 pm

        Hi Jack, I thought I replied to your excellent contribution of comments but I don’t seem to find it. I’m sure you understand!lol What I’m finding with everyone … including myself is that those with brain injuries are the same people who must solve the healthcare problems. Years lapse before we put things together whether it’s multiple mild traumatic brain injuries, severe brain injuries, or chronic illnesses. Patients only have a few minutes to give their symptoms at an appointment and how are we to know what is related and what isn’t? That’s what professionals are paid for and most don’t have time to be bothered and simply don’t care! Is our healthcare system really about health or financial gain? I’d like to believe it’s about health but it certainly falls short of that!

        Most of us believed we were getting proper treatment, but at least years later we figured that out at a devastating cost of ruining lives! It’s incomprehensible how devastating poor diagnosis and treatment is upon the patient and families. I believe that’s worse than the injury itself. We can’t even pay professionals to get it right! I find the most trustworthy and reliable people are those who have been on this journey and I don’t say that lightly as that’s sincere. Stigma of diagnosis and ignorance with healthcare professionals and others in my opinion is worse. It keeps survivors from getting proper treatment hence changing so many lives with an injury. We seek treatment so we can return to our highest level of functioning and we are shunned by those who should be educated!

        I have often felt like just “living under a bridge” because life would be less complicated. I’m thinking many “homeless” people may be homeless by choice and probably suffering from undiagnosed brain injuries and various symptoms including PTSD and depression. It’s sad that we can’t help provide proper treatment, but especially for our Vets who endure devastating brain injuries and PTSD in outrageous numbers. Finally, TBI is in the news more than ever before … now it’s time for treatment! What are we doing to treat our Veterans or are we just fixing the obvious problems at time of injury … surgery then sending them home as though they are healed! Families end up dealing with devastating consequences without support, the injured are expected to “shut up, pull it together, and continue on” as though nothing is different. It’s a horrible tug-of-war trying to appear as though things are good, and problem solving every aspect of life because one can’t make sense of the world, or sense of self any longer!

        Everyone here seems to at least found the Sense-of-Self … but it has taken years, determination, perseverance, and sometimes selfishness to get better! It’s time everyone puts “Self” as #1 because no one else will! Take care and stay safe, Edie

         
  8. jack

    October 15, 2013 at 9:33 pm

    When I read this, it makes me both content on some level, and very sad on another. Content because you write the truth, and sad because it is true. Keep writing! Jack

     
  9. harry frank

    November 19, 2013 at 3:52 pm

    Fifty year old man who lives in a cage not because I like it. I figured out my problem 24 years too late and had wrong faith in people who treated me in the health field. I never figured out specifics to my problem but I believe that due to very human mistakes in health field with very inhumane cover up, I lost career and my daughter. Brain injuries are very difficult for everyone close even the treating medical field. High intact IQ is a barrier to survivor of multiple mild tbi and one serious TBI. I went to medical field for help and understanding. I came away finally learning that despite broken brain I understood them more and was the one with enduring compassion. My life is ruined.

     
    • brain injury self rehabilitation (BISR)

      February 2, 2014 at 10:31 pm

      I am saddened every time I hear history of brain injury, lack of understanding, no compassion, no patience … and the one’s that suffer but understand it all are those with the brain injuries. I only wish others understood how this injury shatters lives. It might not destroy or shatter lives with one or two injuries, but given one major injury or one which another doesn’t recover from has nothing to do with motivation or determination … sometimes our bodies/brains don’t mend themselves and heal. We often question ourselves when we’ve recovered from other injuries without a problem then suddenly no matter what we do, or how hard we try it just doesn’t happen the way we expect or want it to happen.

      I often hear how others have recovered. So did I, from at least 6 major injuries until finally it didn’t happen. Yes, I graduated from high school after an assault, I went on to college and graduated … but then I became a “drop-out” in graduate school following the assault in 1991. It was the hardest thing to do to “drop out”, since I never did that anywhere in my lifetime.

      You are totally right that the people I have meant with brain injuries are the most trustworthy and compassionate souls on this earth. They listen, they understand, they don’t question motivation or determination … they just get it, simply because they “got it”…a brain injury.

      We need to help pave the way for all those lonely survivors. We can make this an easier path for them by our experiences. Our lives have been forever changed in less than a fraction of a second, but we’ve struggled with this new journey that we didn’t willingly join. That struggle gives us strength, albeit how distressing it is to travel this path. It’s a lonely journey when you need to be “perfect” or “flawless” because everyone surrounding us puts us through a microscope and points every single flaw we have. Of course, if others make mistakes it’s okay. Who is anyone to judge others?

      Again, I apologize for such a long delay in my response. I’ve been overwhelmed by everything … life in general. Take care and stay safe, Edie

       

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