Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Archive for the tag “cognitive deficits”

Deb’s Story:

 

Deb has helped provide insights into symptoms that are related to CPM/EPM. She’s suffered from the condition for four years, and I am including excerpts from comments that she’s left me in my comments section to help journal some of the symptoms that aren’t recorded in the medical literature.

In the beginning:

I had the headache for about a month before my collapse into a coma. I kept going to the Chiropractor thinking there was something wrong with my neck, but as it turned out it was my sodium.

She further describes her experience:

My initial symptoms were severe. I was in a coma for 4 weeks. Went into cardiac arrest twice. When I woke I was paralized from the neck down, unable to speak or swallow. I had a feeding tube thru my nose while in my coma, but when I woke and they realized I wasnt able to swallow they put one in my stomache. I was then sent to a nursing home where I did 5 hours of phsyical, occupational, and speach therapy daily. I was in a wheel chair for quite a while. I had horrible pain, sharp shooting pains, and alot of cramping. When I woke from my coma my left foot and leg were cramped up, my foot was up to my knee. My hands, were curled up in balls. To make you understand my mind set, when I saw my neurologist for the first time after I left the hospital, he told me I may be in a wheelchair for the rest of my life. My very first words were “F*** you”. They were faint, and hard to get out, but he had to know what I was thinking. Over the next few months I continued my therapy daily. Eventually I was walking with a wlaker. Then my therapy was cut from 5 days a week to 3. And again over many, many months I began to walk with a cane. My tremers are bad in the AM before my meds, my muscles feels like they are constantly being torn. But now I am duing therapy on my own, I can still only lift 2lbs, I have lost over half of my muscle tissue. They say I may never get that back, also eventually I WILL be back in a wheelchair. I can type with 2 fingers, I used to type 80wpm. I have trouble with my vision, My left eye is now considered a “lazy eye”. When I am tired, or look at the computor for too long it gets a mind of its own. My ligaments in every joint are kinda like broken rubber bands, my joints are what they call “free floating”. So, beginning in Sept I am going to start a series of surgeries on them to tighten the ligaments. I have constant pain, never letting up. Not even for a minute. I go once a week to a Chiropractor because my muscles pull my bones out of place. I also have a massage once a week to help keep me limber. Mind you, I am a former swimmer, loved to run, play volleyball, softball, or pretty much any outdoor sport. Now I have the body of a 80 year old (according to all my docs) and the life of one too. CPM/EPM has stolen everything from me. The only thing I enjoy now is watching my kids screw around in the yard and watching birds. My hands are so weak I can’t even enjoy baking or cooking. Hope this helps, I appreciate your site because I don’t have to say all this stuff on facebook, or even inspire. Sick, just sick to death of this disease. Deb

The following describes her experiences with tremors, a problem that I’ve described in previous posts:

The tremors, Mine are really bad in the AM before my meds. After my meds, they get better. If I am doing anything with my hands for too long they will get bad. I have to have an easy hairstyle because I don’t have the control to “do” my hair. If I hold the hairdryer for too long They will start to shake and cramp. I have an experiment for you; Take your thumb and 1st finger and make a “o” with them. Your thumb should point out at the joint closest to your hand. If it doesn’t you have significant muscle loss. Mine is completely flat, my “o” is more the shape of an egg. Give it a whirl. let me know what you find.

In regards to her experience with how she experienced improvements, but over time, she experienced a decline in her health:

Yes, I have had a decline in my health where things initially improved. I have the same issue with recall, I get so pissed at myself! I can remember things that make me angry or upset just fine, but any happy memories just fade away…… My thumbs face a weird way too when I try to make my “o”. My occupational therapist was the first to notcie it. Also, every morning I cry when getting up, all my joints and muscle are so tight it is rediculous! That’s why I do yoga, it help stretch things back out. What is happening is when you sleep your spasticty is causing your joints and muscles to tighten. So, when you wake in the AM, your body needs to move, if you didn’t move would become “stuck” . I have the reading issues as well, haven’t read a book in almost 4 years. All for now. Deb

………I have been pretty lucky as far as docs go. Since they don’t know much about my disease they take my word for pretty much most of the time. My new issues are my thyroid. I now have hypothryoidism. Never had any issues ever before in my life. My memory sucks as well. I have issues with concentration and my spelling. I could spell anything before, now I have to think thru a word, and sometimes I still get it wrong. I am very spastic, my movements are almost robot like. They have gotten better in some ways, and worse in some ways………

You can read more about spasticity through the blog post I made that included the information that Deb provided.

In regards to the emotional issues related to CPM/EPM, which I touched upon in my previous posts:

….. I know exactly what you are talking about. I still struggle with these things and my cpm/epm happened 3 1/2 years ago. And your right, I never feel truly happy. I can feel good about things that happen to other people. I have lost all of my family (mom, dad, brother, sister) because I just tell it like it is. Things I kept bottled up for 30 years just came flying out of my mouth, I had no control. It was like I was another person. Most of my husbands family has walked away too. They just can’t handle my brutile honesty. Things just blurt right out. I have no control. Before I know what I am saying people are standing there with their mouthes hanging open, just stairing at me. Whatever I am thinking just fly’s out of my mouth! I am almost always so close to tears all it takes is one weird look from someone, anyone and I am crying. In fact yesterday, I told my husband I think I need to find someone to talk to. Someone who justs listens and has no judgement. Since this happened I have felt useless. I have tried every kind of “hobby” you can imagine. Most I can’t do because of my hands, and the rest I just don’t have the patience for. I have been reading your blog on a regular basis, and I think it;s great!……..

Deb has also left several comments on the importance of using sea salt. There is a growing recognition on how sea salt is the better type of salt to use, but I haven’t researched it myself, so I don’t know where the difference is.

…….Also, I have seizures when my sodium gets down to 128. That is the “magic number”. Since my incident, my sodium has been pretty well controlled. I read an article that if you eat sea salt on everything it won’t raise your blood pressure, but also give you what you need. I eat it on everything!!! ……

…….I have been writing to Dr. OZ for 3 years. Also Dr nancy from the Today show. But they don’t want this info out. It would ruin their “salt is bad” campain. They are right, table salt is bad, but sea salt couldn’t be any better for you………..

I hope to post more regarding how CPM/EPM has impacted others, so please feel free to leave me comments, etc if you would like to participate. I really believe this is the only way we”ll ever be able to express our stories in their fullest. Medical journals do not research symptoms or experiences that we suffer from long term. There’s just not enough information regarding our experiences, so we will have to document them ourselves.

THANKS, DEB!!! Hopefully, you will be the first of many 😉

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What’s wrong with me: psychological impact of CPM/EPM:

A few days ago I posted regarding how CPM/EPM has impacted my emotional abilities as well as my cognitive abilities. At that time, I didn’t have a lot of information regarding if this is a typical symptom of CPM/EPM.

Now, I have to stress what I’m sure I’ve mentioned previously; CPM/EPM is RARE. Hyponatremia is not rare, but developing CPM/EPM after it does not happen very often.

It is because it is so rare, there is not very much information, especially detailed information or studies that diagnose the symptoms. So, if  you approach a doctor to get answers, you might very well be given a blank stare. Let’s face it, if we had heart disease or cancer, we would get more information as to what to expect, but CPM isn’t widely seen by the medical profession, and even more importantly there aren’t long term studies or follow up of these patients. You’ll also find a lot of discrepancy in the research articles that are written.

I’ve been to several doctors who have never seen a patient with it.

What does this mean for us?

Don’t set high expectations for doctors who treat you, and as I’ve said before with CPM/EPM, ANYTHING GOES. NO one can tell you with absolution what is happening to you or things that have changed after you developed CPM/EPM isn’t normal or typical, because they DON’T KNOW. They really don’t.

I hope that over time, more research will be done for us who suffer from it, but in the mean time, I hope you find that my blog provides the most detailed information on what to expect.

SO, here’s what I found:

There is a link to emotional issues after CPM/EPM. There’s also a very solid link to cognitive issues. I’m also still trying to find links to the impulsiveness.

The following two links provide brief descriptions in their abstracts about having behavioral changes as well as cognitive changes. Now, here’s the thing; these articles require you to pay for access. I am citing their links, but I will only be able to post them after I gain access to them when I go to my local university, which is what I recommend if you don’t want to pay for them. Simply write down the name of the article, the publication date, etc and go to your local or major university library to access them, usually for free.

http://www.ncbi.nlm.nih.gov/pubmed/10514953

The following link provides information on the cognitive deficits a person experienced after developing CPM/EPM (but again to access full article requires payment):

http://www.tandfonline.com/doi/abs/10.1080/13554799808410619#preview

The following research article gives a fantastic description of how the damage occurs, but I will post that under the information regarding hyponatremia and the CPM section that describes how the damage occurs. The following quotes, I’m including gives an example of why I believe articles are pretty vague, but does give a more detailed account of the cognitive symptoms that we may experience:

A more recent study examined 12 individuals with CPEPM related to a variety of medical causes. In this more diverse population, four patients died in the acute  phase, and two were lost to follow-up. The remaining six were reported to have “good motor and cerebellar recovery.” However, all five of the patients who received neuropsychological testing had evidence of subcortical/frontal dysfunction, and most of these (4/5) were unable to return to work.

The next quote also describes another study that was researched:

Almost half (12/25) died either during the acute phase (2) or after hospital discharge (10). One was lost to follow-up. At final follow-up (mean 2.2 years; median: 1 year; range: 0 – 8 years), 29% (7/24) were normal; 17% (4/24) had mild cognitive or extrapyramidal deficits; and 54% (13/24) had a poor outcome (died or were dependent).

To clarify the above study: 2 people died immediately, 10 died after hospital discharge (but it doesn’t say from what); one died but not sure from what; 7 were “normal”, but it doesn’t clarify what that means; and 4 had deficits. Now, if you do the math these numbers don’t add up to 25…so what does that mean? There must be a mistake or error somewhere, and I think that helps to emphasize my point. The research articles on CPM/EPM are vague.

The next quote provides information from this research article on some of the cognitive impairments experienced:

A patient with only EPM (lesions in
the basal ganglia) had severely impaired attention, verbal and visual memory, visuospatial function, frontal
executive function, recognition memory, free recall
memory, and naming, with preservation of other language-related functions.
29
All these deficits are consistent with previous reports in patients with basal ganglia
lesions. In the other case, the patient had CPEPM (lesions in the pons, caudate, lentiform nucleus, thalamus,
and internal capsules).
28
At 1 week, the patient had
prominent deficits in attention and concentration (e.g.,
high distractibility, slow visual scanning), memory (immediate verbal recall and memory for daily events),
visuomotor functioning, and fine motor speed.

The above information really defines what I’ve been experiencing. My lesions were in the basal ganglia, so I have to say it’s pretty accurate in my regards.

The study goes on to explain that there were additional cognitive dysfunctions that occurred after the initial damage occurred and resulted in “pathological crying and laughter at 6 months after symptom onset, all consistent with a brainstem process.”

Doesn’t that sound a bit familiar. I’m not sure exactly what the pathological crying means. I’m guessing they mean it was inappropriate.

THE ABOVE QUOTES COME FROM THIS ARTICLE: http://neuro.psychiatryonline.org/data/Journals/NP/4399/jnp00411000369.pdf

It is very insightful, but I recommend breaking it up into sections because it can become a bit overwhelming.

So this is the information that I have found up to this point, but I’m sure there will be further information to come. There’s so much to go through..dud links…search results that don’t have anything to do with what you want, etc. Consider this post, like all of mine, a work in progress.

I hope it helps, and if you find something, message me with the link so I can add it. I REALLY appreciate your feedback. Truly the only way we can find out what is happening with CPM/EPM is through your feedback of what’s happening to you, so LEAVE comments, and details, etc. You’ll be helping other people!!

UPDATED: 04/20/12….Ok, so folks, so I have been trying to find more references to the psychological impacts of CPM/EPM.  The following link is in reference to a man who developed CPM/EPM after quitting drinking. They performed an MRI that showed lesions in his brain correlating to CPM. His behavior and symptoms progressed, and he began to develop angry outbursts, etc. They performed another MRI that showed demeylination was spreading further in the basal ganglia and the pons.

Two days after the admission, he showed violent behavior, agitation and irritability, getting angry on the slightest provocation without any mental changes or Parkinson symptoms or aggravation of his dysarthria. At first, we considered his symptoms to be alcohol withdrawal psychosis and started antipsychotics to control him, but his symptoms worsened. We performed MRI again 5 days after he developed psychiatric symptoms. The second MRI showed extended lesions in the bilateral basal ganglia and pons, as compared with the previous MRI.

The previous quote and information comes from: http://alcalc.oxfordjournals.org/content/43/6/647.full

This research article states that damage specifically associated with the basal ganglia areas are documented to cause behavioral and cognitive changes:

Abnormality of the basal ganglia is known to cause various cognitive dysfunctions and abnormal behavior via the involvement of the corticostriatothalamic or cortical–subcortical circuit through the basal ganglia (Carlsson,1988), while the role of pontine pathology for cognitive function and personality remains unclear.

UPDATE: 11/14/12

I have found this great research article that sites long term effects of brain injuries. In subsequent posts, I have decided that is safe to draw correlations between all brain injuries, so the following article describes what may happen psychologically after developing a brain injury. I have found that I have experienced a number of these issues, especially with distancing myself emotionally from people. There seems to be an emotional disconnect on a personal level, but I have the ability to cry over anything I experience regarding my brain injury. I don’t have all the answers for what is happening on a psychological level, but the following article does describe a lot:

http://apt.rcpsych.org/content/5/4/250.full.pdf —Psychiatric Sequelae of Acquired Brain Injury-Ken Barrett, APT 1999, 5:250-258

 

I am adding this quote from another research article that I found:

A patient with central pontine myelinolysis (CPM) underwent neurological and mental status examination, as well as neuropsychological testing, during the acute stage of the disease. After correction of the hyponatremia, a gross change in his neuropsychiatric status was observed. The patient underwent extensive neurological, psychiatric, and neuropsychological testing during the acute phase of the disease and at follow-up 4 months later. All major neurological and neuropsychiatric symptoms present at onset were fully reversible. Neuropsychological examination revealed deficits in the domains of attention and concentration, short-term memory and memory consolidation, visual motor and fine motor speeds, and learning ability. Although improved, neuropsychological testing still revealed remarkable deficits at follow-up. We conclude that neuropsychological deficits can accompany CPM, and that these deficits do not necessarily diminish simultaneously with the radiological or clinical neurological findings but may persist for a longer period of time, or even become permanent. In his recovery the patient started to manifest new neurological symptoms consisting of a mild resting tremor of both hands and slow choreoathetotic movements of the trunk and the head, which we considered to be late neurological sequelae of CPM. The significance of CPM in the differential diagnosis of acute behavioral changes after correction of hyponatremia is stressed, even if correction is achieved slowly and carefully.

This really explains the problems that I’ve experienced, and even mentions that you can have late onset symptoms related to CPM/EPM. The above quote comes from http://www.ncbi.nlm.nih.gov/pubmed/10514953

 

Just another day:

Hello All!

I’m sorry it has been so long since my last post. I have a million excuses as to why, but none of them are really good. I’ll give them to you anyway: I wasn’t home. I’ve been busy. My hands keep cramping. I have the attention span of a gnat. I have lost my train of thought on what to blog about next.

Okay, so some of those might be good reasons.

So, what’s happening with me?

It’s almost 10 months since I developed hyponatremia and subsequent myelinolysis! I can’t believe it’s almost been a year.

I have to say that some of my more concerning symptoms, mainly the speech issues, have become significantly better. Oh, I’m not going to pretend that I’m completely back to normal, but from where I was to now, there’s been a dramatic and miraculous improvement. I am extremely grateful. It gives me a new appreciation for people who live with speech impairments. They say people first judge you on how you look, but the very next thing is how you speak.

Despite the fact that I work at Victoria’s Secret Catalog, I do not have an extraordinary fashion sense…well, I do have a pretty good fashion sense, I just don’t have the financial means to support it. So, the fact that my almost everyday ensemble consists of jeans, a tee shirt, and a pair of worn out Asics sneakers, probably doesn’t scream fashion guru or speak volumes about who I am as a person, that means that the way I speak probably has a little bit more influence on people’s opinion of who I am.

This means the more that I stutter, stammer, and trip over my thoughts, combined with the super sloppy, casual wardrobe choices that I can afford might lead a person to suspect, I’m slightly retarded.

Previous to my impairment, I had the ability to impress people with my wit and vocabulary fluency.  I was viewed as more of a nerd who didn’t need to worry about fashion because I had more important things to be concerned with than wardrobe choices.

Ok, so to prove my point…it has taken more than 30 minutes to write this. This isn’t an epic story. It’s not even utterly brilliant. It’s just an explanation of my speech issues. My mind skips like an old vinyl record.

I will literally go from thinking about what I want to write, to trying to find the words that I want to use, to trying to convey what I mean in a way that makes sense to everyone else.

It is so freaking frustrating!!

It really is, and if you have CPM/EPM, than you might understand exactly what I’m describing. If you have a brain injury or learning disability, you might also understand. It’s not WHAT you know or understand, it’s an inability to express what you know and understand.

See, just writing this jogged my memory; I wanted to continue to write about brain injuries and how to find support through the Brain Injury Association.

So, now, I’m thinking…I should be writing about the BIA, but this is the wrong place to write about the BIA. I need to stay focused and try to regain a sense of this post.

Getting back to my original topic…my speech has improved, but I still have ongoing issues, especially when I’m nervous. I would have to say my biggest obstacles are the movement issues (tremors, jerks, spasms and cramps), and cognitive deficits (learning impediments, memory problems, attention problems, and recall).

The movement issues aren’t extreme.  I mean a person with late onset Parkinson’s has greater issues than I do. Some person’s with CPM/EPM have greater issues than I do. (I’m going to post a few YouTube videos to demonstrate my point), but I still have movement issues.

Right now, I am having a hard time keeping my left hand steady enough to type. My left thumb keeps twitching rapidly. It’s so annoying. I can’t do anything to stop it. Then it becomes painful. I really have lost function in my abilities to do certain things.

I was at the Columbus Zoo several weeks ago, and I tried to make a video of a leopard stalking an unexpecting rabbit that had wandered into its cage. After about five minutes, I was unable to hold my cell phone up to take the video, my arms were cramping so badly that I couldn’t hold the camera.

These movement issues are getting worse. I am not certain as to why. I know that some people who have experienced damage to the basal ganglia have late onset movement issues with dystonia and Parkinson’s like tremors. I am 90% certain that this is what I’m experiencing.

However, I have autoimmune issues, and I have to wonder if my autoimmune issues are contributing to the neurological manifestations of EPM.

I have a feeling that it will be extremely difficult to get an answer to this, but if I do find out more, I will keep you posted.

The other new symptom that has become apparent is autonomia. I’m not sure if I’m classifying this correctly. It’s actually a dysfunction in your autonomic nervous system. There has been reports of having irregularities in heart rate, blood pressure, central nervous system caused sleep apnea, etc.

When I had my sleep study (after diagnosed with EPM), I had one instance of central nervous system induced sleep apnea. I had taken ambien and I think that influenced my study because I did sleep better than what I normally do, but I do not know if it would make central nervous system induced sleep apnea better or worse.

I had issues prior to EPM with tachycardia. My heart rate has now become extremely erratic. I will have a pulse varying from 45 to 116. Literally, I will watch my pulse go from 59, 65, 80, 95, and then drop back to 50 in 10 to 20 second intervals.

My EKG has also shown “new” abnormalities.

The abnormalities in my EKG appeared when I was seeking treatment for EPM before I had an official diagnosis.  I’m almost 100% certain that EPM caused the change in my EKG.

I hope to get further testing that might be able to determine if my issues are being caused by my autonomic nervous system, but it most likely won’t occur until July or August. I will keep you posted.

I have to say one of the most positive experiences I’ve had recently is meeting with my cognitive therapist.

I am seeing Angela C with Kettering Medical Center, Kettering Ohio. I can’t say enough about this person. She has offered me hope for the first time in my recovery.

She completely understands what I’m experiencing, and that is refreshing both physically and mentally. Trust me, not all of the doctors I’ve seen in the past 1o months have been supportive or understanding. Angela gets it. She KNOWS where my deficits are. She understands that I was bright before my injury and that I was inspiring to be a doctor, and she is working with me to manage the deficits that I have to navigate around them to learn ways to succeed.

I am really excited to be working with her! I highly recommend that if you are experiencing any type of brain injury or even ADHD or ADD to  find a cognitive therapist to help teach you techniques so that you can become more successful.

One thing that Angela has stressed that I want to share: Be kind to yourself! It’s easy for me to criticize myself when I hit a wall, when I can’t think of a word, or when I become distracted for the 100th time in an hour. She’s teaching me to not beat myself up over it. The more I stress over these mistakes the more I derail myself.

The other thing I’ve been working on: breathing. Yep, I really didn’t know how much I tend to hold on to things when I’m not exhaling. I’m great at inhaling, but exhaling..well, I’ve got to practice. More importantly, breathe in deeply through your nose and exhale loudly and completely through pursed lips…a slow, steady exhale. It really does help.

SO, there you have it folks. I’ve discussed the physical and mental issues that I’m experiencing with EPM at the 10 month point.

I hope it helps 🙂

Have a great night, and feel free to contact me with any questions!!!

Oh, yes the videos…click below to see some of the videos of CPM, EPM issues. Keep in mind, I think these are extremes. My movement issues pale in comparison. I’ll post a few of my movement videos in the future.

http://www.youtube.com/watch?v=nnvcSGj7vY8

http://www.youtube.com/watch?v=58jik7RgZzs&feature=related

http://www.youtube.com/watch?v=v-_xNbZ5ef8&feature=related

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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