Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Brain Injury:

This might seem utterly ridiculous, but up to this point, I did not realize I HAVE a brain injury. EPM and CPM causes a BRAIN INJURY. Maybe it would be more appropriate to state, that I didn’t realize what it meant to have this injury.

Of course, I’ve known that I have had damage to my brain, but that already happened, and for whatever reason, I did not consider that injury along the same line of having an injury caused in a car crash or stroke, etc.

The injury was in the past. It happened. It’s over.

This is the reaction that I’ve had from all of my doctors up to this point. Every doctor that’s treated me for issues related to EPM has stressed to me that the injury has happened. It will not happen again. The damage has been done and from that point forward I will only get better.

Many of my doctors have stressed that because my MRI has shown improvements, healing, then it’s just a matter of time before I’m 100% normal again.

Let me stress, this is NOT true. As, I’ve mentioned on numerous occasions, the MRI detects inflammation in the brain and even though the inflammation does dissipate in the months after CPM/EPM, it does not mean that you are going to be 100% back to normal. You may or you may not. The MRI images do NOT correlate to the symptoms you experience with this injury.

My MRI images have shown improvements. My doctors have told me that I am certain to get better, and I have been left struggling with wondering; Why am I not back to my normal self? It’s almost 9 months post injury, why am I not normal yet?

Further, NONE of my doctors touched upon the issues that have been most concerning to me, deficits in my cognitive abilities. It is extremely difficult for me to stay on task. I have short term memory problems. I have problems with reading and writing. I have difficulty thinking of words. I have attention deficits. The list goes on.

I recently was in training for work, and after 30 minutes, I couldn’t retain any more information.

Have you ever made manicotti? If you aren’t familiar with it, is a large cylindrical shell. In most cases, you stuff the shell with a cheesy filling.  The shell is hollow and open on both ends. My ability to retain information is like a stuffing a manicotti shell. You can keep adding filling, but it’s just going to leak out the other side.

I might have retained some of the information from our recent training, but at this point, I’d say 70 to 80% is gone. I might remember parts of what I learned at points in time, but I almost guarantee that I couldn’t sit down and recall everything.

Here’s something that I don’t think I’ve discussed previously; I have found that my past memories have become extremely vivid and are constantly at the forefront of my mind. It’s so frustrating. I don’t know why these things are so blaring and concrete. I have no control over when they occur. I have no idea why they occur. They aren’t even significant events, but just random memories that are mundane and non influential.

Not all of them are mundane, and I have to say that’s even worse. Events that I would rather not think about come to my mind as well, bringing with me emotional turmoil and grief.

So why is it that I can remember sitting in the backseat of our beat up brown SAAB, as a kid, in the middle of the summer and arguing with my brother’s about Garbage Pail Kid cards, as we waited for our mother to come out of the grocery store around the age of 8, but I couldn’t remember to call my doctor’s office to schedule an appointment for the 4th day in row?

Folks, the stuff that filters through my mind on a daily basis in such GREAT detail about my past..from the weather and temperatures to clothes that I was wearing. It’s mind numbing. Why am I remembering these things constantly, but can’t retain 1/10th of events happening now?

After doing the research on my last post, Cognitive Therapy, I realized why. I HAVE A BRAIN INJURY!

CPM and EPM did more than just cause a temporary damage. I am utterly clueless why my current doctors who are treating me for this have been so adamant about not acknowledging this! I’ve spent the past 8 and a half months struggling to come to terms and prove that this isn’t something I’m making up. I’M NOT FAKING THIS, and now I understand why these things are happening to me.

I’ve had doctors tell me it was stress. It was from fatigue.  I’m faking these issues. It’s test anxiety. It’s not related to EPM. It’s long term ADHD. It’s from having high cortisol.

I’ve struggled to understand why these issues became a problem after I developed EPM. I’ve questioned my sanity. I’ve questioned the severity of these issues. I’ve wondered if I was exaggerating these problems.

I’ve had people try to tell me it’s normal. It’s what happens when you get older.

If you are reading this, then I’m here to tell you, those people are FULL of it.

Let me stress, the reason you have the issues that you do is because you have had a trauma to your brain!! The damage is not necessarily ongoing (though that is also questionable), but the cognitive issues ARE or at least can be.

I now have answers and understanding to why these issues are occurring AND I can share with you, hope.

I had no idea as to how much support there is for brain injuries. There is actually a tremendous wealth of information regarding what might be considered “minor” brain injury.

Now, I’m not going to classify EPM and/or CPM as a minor brain injury. There are people who are living their lives completely incapacitated, requiring 24 hour support. That’s not minor. On the other end of the spectrum, you have people like me, who have are “functionally disabled”. You can live your daily life with little or no assistance, but you have not returned to your former self.

The following information I found online from Dr. Thomas Kay a renowned neuropsychologist who has specialized in minor brain injuries:

There is a known natural course of recovery for concussion, and the vast majority of persons appear to recover completely. (“Appear” is italicized because there is increasing evidence that there may be sub-clinical residual damage that can become manifest under certain circumstances, or can accumulate and cross a threshold after a series of presumably fully recovered concussions.)

There are predictable clinical deficits that occur immediately after most concussions: problems with attention, concentration, and short term memory; irritability; headaches; dizziness and balance problems; sensory sensitivity). These are often referred to as the “post-concussion syndrome.” However, because only some of these symptoms come from an injury to the brain, while others come from non-brain body systems, I prefer to avoid the phrase “post-concussion syndrome,” and try to refer to “post-concussive symptoms.”

A subset of persons who suffer concussions, or mild traumatic brain injuries, have long term residual symptoms, and a smaller subset remains highly dysfunctional. There is a long standing, often bitter, debate about why some people do not recover completely from concussion or mild traumatic brain injury. At one extreme, some advocates maintain that all problems are due to permanent brain injury. At the other extreme, skeptics maintain that anyone who fails to recover from a concussion/MTBI either has psychological problems or is malingering, and maintain that it is not possible to sustain permanent neurological damage from a concussion.

He goes on to state:

It is important to realize that multiple factors other than neurological ones can contribute to the appearance of brain injury, or exacerbate the apparent severity of brain injury. These include pain, sleep deprivation, depression (which is extremely common), anxiety, PTSD, and the results of medication (especially narcotic analgesics).

The evaluation of MTBI is complex, and needs to sort out the various contributing factors. Comprehensive evaluation should be delayed until the natural course of recovery has been completed (often up to a year), and major psychological complications have receded. Briefer screenings can track cognitive recovery. Patients who are depressed will often perform much lower on cognitive tests, than when they are not depressed.

Tests of effort are also an essential part of neuropsychological testing. Multiple studies have shown a tendency for a high percentage of persons with MTBI to fail tests of effort, and underperform on cognitive tests. In my opinion, tests of effort may be failed for a variety of reasons having to do with motivation. In order for neuropsychological test data to be interpreted as valid, tests of effort must be passed. (Failure of tests of effort does NOT necessarily mean a person does not have a brain injury.)

Clinical treatment of persons with MTBI will depend on the relative contribution of neurological, physical, and psychological factors. The neuropsychological approach I take is determined entirely by the presentation, dynamics, and needs of each individual person. I conceptualize treatment of MTBI as the restoration of an effective sense of self. Limits on this restoration may or may not be set by neurological injury. Each individual is different.

I am going to elaborate on this post in the near future, but before I end tonight, I just wanted to share this exciting news. Yes, folks, we have a brain injury, and if you are experiencing these issues than you are not alone and there are people who will believe you and your issues. Most importantly, now you have a source for help. 🙂

Keep checking back on this post for the next few days because when time and energy allow, I will be updating with more detailed information for support and direction.

 

The Updates:

This is I believe an amazing quote:

Brain injury is not an event or an outcome. It is the start of a misdiagnosed, misunderstood, under-funded neurological disease.

This quote is from the Brain Injury Association of America:

http://www.biausa.org/

I really believe it is absolutely true. I’m hoping it is not true for you, but it describes me to a T.

Update:  This person found my site and after reviewing it, I really found the information extremely beneficial. I recommend checking it out: http://brainhealthresources.wordpress.com/2012/05/09/there-is-help-for-battered-athletes-and-tbi-patients/

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3 thoughts on “Brain Injury:

  1. Pingback: Juggling Invisible Balls « ADD . . . and-so-much-more

  2. Hi I have CPM and EPM, but I spend most of the day and night in bed. I am in so much pain that I am ready to find a bridge most of the time. I am deeply depressed inside, but my personality just keeps me nice and upbeat. Why didn’t somebody tell me so I could avoid all the confusion since the injury. I am pissed off about this and it’s been devastating to my career. My name is David and I was “locked-in” for a couple of months. What a nightmare. More than anyone can imagine. I hope we can be pals.

    David

    • HI, David!!! First, I want to say, I’m so so so sorry that you have this horrible injury as well. Of course, we can be pals 🙂 The sad thing is we are not along in this, but I have to tell you I’m terribly excited that you have contacted me because there aren’t that many of us around. You’re officially the sixth person still living (including myself) that I know who have suffered from this injury. I know there are more, but I’ve only met 5 others.

      SO, because you are new, and I am excited, I am going to ask you a MILLION questions 😉

      How did you get it? Where do you live? How long have you had it? How are you doing? Feel free to read all about my blog. There’s a lot of information, and I LOVE to have feedback, so please let me know what you’ve experienced, where you would add something, or what you would like to see more information about. Feel free to ask me questions, and if I don’t have an answer I will try to find it.

      But mostly, David, don’t give up. I know the crap we are living with is UNBELIEVABLY hard, and there are SO many days that I wish I could crawl into bed and never get up again, but then I wouldn’t get to meet a new person that I can help and who can help me. The pain is horrible and difficult, but we can get through it. I’ve found that massage therapy is REALLY giving me a lot of help there, as well as heating pad therapy. You also have to avoid stress too.

      Anyway, feel free to write to me through my blog, and I will be happy to help you as much as I can. Take care!

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