Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Archive for the month “April, 2012”

Dying to play Football:

This post is a bit of a stretch from my norm, but I really think it deserves a look.

I encouraged my son to start playing football in 2nd grade. I thought it would be a great way to build character, endurance, and I really thought it would help me as a single mom teach Zachary more about respect and discipline. Ok, and let’s face it, everyone wants their child to become an athletic super star.

I’ve always encouraged Zachary to dream big, and now that he’s finishing his freshman year of high school, he is dreaming big. He does want to play college level football for Ohio State University. It’s been his dream since he was in the fourth grade, and following that he dreams of playing for the NFL. I have never discouraged him. I believe he can do anything he wants to do, but after I sustained my brain injury, I’m looking at his “career” in football in a whole new light.

Tonight, I read another account of a retired NFL player committing suicide. My heart goes out to his friends and family, and I really believe that his physical trials after playing football need to be addressed.

Here’s the reality folks, a brain injury is a brain injury, and though there are MANY ways to have trauma to the brain, it really is all the same.

Let me clarify, I’m not saying that EVERYONE who has a brain injury has the same symptoms, but an injury to the brain is an intense injury, and it is an invisible injury to the rest of the world.

If you saw someone in a wheelchair, you have an immediate awareness that this person has a disability, but there are no external indicators that tell you a person has a brain injury. You really have no way of telling.

Trust me, before my injury, I would speak to people through my job, and I would immediately assume that they were really, really stupid. Some people, I talked with, I knew they had an injury because their speech was impacted, but for those where it wasn’t apparent as soon as they started speaking, I seriously judged their intellect.

I know better now.

Whether you were in a car accident, you fell down and hit your head, you were in sports like boxing or the NFL, or you just got into one too many fights, it’s important to realize that you may have life long issues related to these occurrences. AND please be aware, even just one event can cause these life long issues.

Okay before you start walking around with a helmet strapped to your head, in most cases, one bump to the head won’t cause permanent damage, but it is anticipated that more than 1.2 million people or more experience mild traumatic brain injury.

To differentiate, a person with a Traumatic Brain Injury usually needs to be hospitalized for their injury, and in regards to a Mild Traumatic Brain Injury, a person sustains ongoing issues after receiving a hit to the head, but did not require hospitalization. However, it is believed that there could be a significantly higher number of people with MTBI. The following quotes come from the CDC. In 2003, they were approaching congress to obtain more funding to study MTBI:

First, no standard definitions exist for MTBI and MTBI-related impair­
ments and disabilities. The existing Centers for Disease Control and Prevention (CDC)
definition for TBI surveillance is designed to identify cases of TBI that result in hospital­
ization, which tend to be more severe. MTBI is most often treated in emergency depart­
ments or in non-hospital medical settings, or it is not treated at all. Few states conduct
emergency department-based surveillance, and current efforts do not capture data about
persons with MTBI who receive no medical treatment. Additionally, neither hospital- nor
emergency department-based data can provide estimates of the long-term consequences
of MTBI.

In 2003, the Center for Disease Control defined Mild Traumatic Brain Injury as this:

The Definitions Subgroup developed a conceptual definition of
MTBI based on clinical signs, symptoms, and neuroimaging; and an operational defini­
tion to be used in identifying cases of MTBI in administrative databases, medical
records, and survey and interview results. The Methods Subgroup evaluated surveillance
databases and identified those that would best capture the types of data needed to determine the full magnitude of MTBI and related impairments and disabilities.

The conceptual definition of MTBI is an injury to the head as a result of blunt trauma or
acceleration or deceleration forces that result in one or more of the following conditions:
● Any period of observed or self-reported:
◆ Transient confusion, disorientation, or impaired consciousness;

◆ Dysfunction of memory around the time of injury;

Loss of consciousness lasting less than 30 minutes.

● Observed signs of neurological or neuropsychological dysfunction, such as:
◆ Seizures acutely following injury to the head;
◆ Among infants and very young children: irritability, lethargy,
or vomiting following head injury;
◆ Symptoms among older children and adults such as headache,
dizziness, irritability, fatigue or poor concentration, when
identified soon after injury, can be used to support the diagnosis
of mild TBI, but cannot be used to make the diagnosis in the
absence of loss of consciousness or altered consciousness.
Research may provide additional guidance in this area.
Based on this conceptual definition, separate operational definitions of MTBI are
recommended for cases identified from interviews and surveys, administrative health
care data sets, and patient medical records.

The conceptual definition of a prevalent case of MTBI is any degree of neurological or
neuropsychological impairment, functional limitation, disability, or persistent symptom
attributable to an MTBI.
The operational definition of a prevalent case of MTBI-related impairment, functional
limitation, disability, or persistent symptoms is any case in which current symptoms are 3
reported consequent to MTBI or made worse in severity or frequency by the MTBI,
or in which current limitations in functional status are reported consequent to MTBI.
Symptoms and limitations are described on pages 19-21. (http://www.cdc.gov/ncipc/pub-res/mtbi/mtbireport.pdf)

Ok folks, so what does all of that MEAN?

The CDC realized that in regards to mild trauma to the head, those hits that don’t require hospitalization, are being ignored in the medical community as causing a problem. They understand that these is a serious lack of understanding regarding the brain trauma that occurs after something as simple as whiplash in a car accident or a hit in the head during a boxing match. In order to try to obtain information for those that are being injured, but aren’t being hospitalized, the CDC created the above definitions for hospitals and doctors to use to try to document these cases. So, the above information is a guideline set up by CDC, so that they could start researching this issue further.

They set up the definitions in two parts. The first part is more of the physical symptoms that present and establish that a person might have experienced a MTBI, and the second part is the cognitive effects a person might experience after having a MTBI.

They are stating that doctors should pay attention to both definitions, the conceptual and operational.

This means, YOU should pay attention to both as well because if you fall down and are disoriented, you might experience ongoing issues. However, that does not mean that you WILL experience ongoing issues.

It is anticipated that approximately 30% of those who experience a hit to the head will experience temporary issues, but only 5 to 7 percent of that 30% will have permanent ongoing neurological or cognitive issues.

It is also believed that MTBI’s tend to build, and this brings us back to our NFL football players. If you had just one hit to the head or maybe two or three, the chances of your having a permanent brain injury are pretty remote, but if you started playing football in 2nd grade, and continued to sustain hits through high school, college, and then into the NFL, well by the time you’re in your early 40’s, your brain is going to start turning to jelly. Ok, not literally jelly, but figuratively.

So that brings us back to, you can’t see the injury, and most people don’t understand what’s happening to them. You fell off your bike, and you weren’t wearing a helmet, and you haven’t been quite the same since. You might go to your doctor. They might order a few tests, but brain injuries do not always show on a MRI or CT scan, or by the time a doctor orders it, the inflammation that the images detect has subsided, and you probably start to feel just a little bit crazy.

You don’t feel the same. You can’t think as clearly as you did before, but your doctor does not see anything in your scans. YOU FEEL LIKE YOU’RE GOING NUTS. Then, you get depressed. No one believes you. Your doctors are telling you there’s nothing wrong. Your spouse doesn’t understand what’s happening to you. You get depressed, and you don’t feel like life is worth living.

Folks, it’s time to understand that you aren’t alone, and no matter how you received your injury, you have an injury. It’s an unseen injury, but you aren’t crazy, and you deserve and need to get help, cognitively, psychologically and physically.

Ray Easterling, former Atlanta Falcons defensive back, died from suicide this weekend. He suffered from memory issues, headaches, dementia, and other health issues.

The NFL is being sued because it is believed that the league was aware that continuous concussions were causing these injuries, but they did not make players aware of the risks, and in some cases denied players ongoing health coverage to help with their medical problems (http://msn.foxsports.com/nfl/story/Ray-Easterling-death-ruled-suicide-Atlanta-Falcons-041912).

http://www.youtube.com/watch?v=pJCEbHJ1oBY&feature=fvst

In 2007, there was a fund created by the NFL to cover medical costs of retired NFL players, however this fund does not cover older NFL team players, and they do not choose to cover everyone’s costs. There is a panel that decides whether or not a former NFL players medical costs will or will not be covered. (http://www.nytimes.com/2011/02/21/sports/football/21duerson.html)

For information on the 88plan:     https://www.nflplayercare.com/Default.aspx

Another great website regarding medical assistance for former NFL players:  http://www.gridirongreats.org/

It is important to understand that the name used for the brain injuries that these football players had is Chronic traumatic encephalopathy (CTE), but this is the name of a disease related to chronic brain injury, either TBI or MTBI.

Other NFL players that have committed suicide after brain injury (CTE):

Andre Waters (2006)

Dave Duerson (2011)

Rick Rypien (age 27)

Michael Current

Shane Dronett

Corwin Brown (suffering from brain injury, attempted suicide, but luckily survived)

Owen Thomas (COLLEGE FOOTBALL player with Penn State had the same injury as the NFL players above).

Please note that the above football players lost their lives, but thousands of others are living with TBI and MTBI, and are at risk.

It is also important to note that it is not just football players, but cheerleaders, boxers, martial artists, kick boxers, soccer players, etc that can also receive these injuries. It’s also important to understand that something as simple as being in a car accident that causes whiplash can cause this injury.

It’s really important to spread the word regarding how this unseen injury is impacting people in their every day, and to understand that if you experience things that just aren’t right for you (unexplained headaches, nausea, memory loss, fatigue, visual or hearing disturbances, attention problems, etc…SEEK HELP. You might be wondering what your next step is after you have been told by a doctor that nothing is wrong; call your local hospital and ask about neurocognitive testing with a psychologist or a neuropsychologist. In most cases, your insurance will cover this type of testing, but you might need a doctors referrel.

In the end, DON’T GIVE UP. YOU ARE NOT ALONE!!

PLEASE, if you are experiencing issues that you don’t understand and need help: LEAVE A MESSAGE here or you can also contact the http://www.biausa.org (that’s the brain injury association).

I really recommend online support groups. It’s AMAZING to talk to people who are LIVING with the same types of issues that you are.

If you are experiencing suicidal thoughts, call 1-800-suicide (1-800-784-2433) or you can go online to crisischat.org. OR go to your nearest emergency room.

In the end, you are not alone, and even though your life has changed and it’s not easy, you can get help and you can learn ways to live and adjust to your injury.

GOD BLESS!

Here are a following broadcasts regarding concussions and mild head injury in sports:

Football:

http://www.youtube.com/watch?v=VfO6Yyr4dmw

http://topics.nytimes.com/top/reference/timestopics/subjects/f/football/head_injuries/index.html

Soccer:

http://www.youtube.com/watch?NR=1&feature=endscreen&v=klESLYtbRe8

Sports in General:

http://www.youtube.com/watch?v=T3FLRDxbLXg&feature=related

Head trauma related to the pituitary gland and how head trauma impacts your hormone function:

http://www.youtube.com/watch?v=Q8DXiCr3-jE&feature=related

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A large number of case reports regarding CPM/EPM:

This post is going to list a website that I found regarding dozens of case reports regarding CPM/EPM.

I was really surprised that these case reports, though brief, do correlate to many of my previous descriptions of symptoms associated with CPM/EPM. I do not know where these case reports were cited from, and I wish that there were more detailed accounts, but we have to work with what we have. The following information comes from this link: http://www.lookfordiagnosis.com/cases.php?term=Myelinolysis%2C+Central+Pontine&lang=1&from=10

11/105. immunoglobulins are effective in pontine myelinolysis.

Although the exact pathogenesis of central pontine myelinolysis (CPM) is unknown, correction of hyponatremia, thyreotropin releasing hormone, plasmapheresis, and corticosteroids seem to be effective. Assuming intravenous immunoglobulins (IVIG) to also be effective in CPM, 0.4 g/kg body weight/d immunoglobulins were applied to a 48-year-old patient who developed CPM with double visiondysarthria, dysphagia, and left-sided hemiparesis 3 weeks after spontaneous normalization of hyponatremia. After 5 days of IVIG, his symptoms markedly improved, confirmed by improvement in the Norris score (42%), Frenchay score (19%), Kurtzke score (20%), Disability score (54%), vital capacity(26%), and peak torque (69%). The promising clinical effect of IVIG was assumed to be caused by the reduction of myelinotoxic substances, the development of antimyelinantibodies, and the promotion of remyelination. In conclusion, IVIG appear to be a promising therapeutic option in CPM. (+info)

12/105. Parkinsonism after correction of hyponatremia with radiological central pontine myelinolysis and changes in the basal ganglia.

Parkinsonism has been rarely described following central pontine and extrapontine myelinolysis. We report a case of parkinsonism developing following rapid correction ofhyponatremia with radiological evidence of central pontine myelinolysis and changes in the basal ganglia. A 56-year-old man developed drooling and bilateral hand tremors 3 weeks after correction of hyponatremia from 103 to 125 mmol/L over 14 h. He had a prominent 6 Hz resting tremor which worsened with action and mild cogwheel rigidity.magnetic resonance imaging (MRI) showed changes consistent with central pontine myelinolysis and increased signal on T1-weighted images in the putamen bilaterally. Histremor responded well to L-dopa therapy. There have been several other cases of parkinsonism developing after central pontine/extrapontine myelinolysis. Increased signal in the basal ganglia on T1-weighted images has been described in another case of central pontine myelinolysis imaged about the same time after sodium correction as our case.(+info)

13/105. Central pontine myelinolysis: association with parenteral magnesium administration.

A 29-year-old woman with diabetes mellitus and nephrotic syndrome was given 30 g ofmagnesium sulfate over 14 hours after a cesarian section. Her serum magnesium level increased to 7.4 mg/dl. Five days later, she became quadriplegic with inability to speak or swallow. Cranial magnetic resonance imaging demonstrated central pontine myelinolysis (CPM). Initial serum sodium was not measured. Although CPM is usually associated with a rapid increase in serum osmolality, most patients who experience a rapid increase inserum osmolality do not develop the clinical syndrome of CPM. Consequently, additional factors may also be important in the pathogenesis of CPM. Parenteral magnesium administration may be a potential contributing factor in the pathogenesis of some cases of CPM. (+info)

14/105. Central pontine myelinolysis: delayed changes on neuroimaging.

The authors report two cases, a 44-year-old woman and a 6-year-old girl who had mental status changes and hyponatremiaserum sodium levels in both of these cases were corrected quickly with further decline in their mental status, and the patients became quadriparetic. magnetic resonance imaging (MRI) studies performed then did not reveal any abnormalities, whereas a repeat imaging study performed 10-14 days after the shift inserum sodium revealed evidence for central pontine myelinolysis and extrapontine demyelination. The clinical manifestations and distribution of lesions seen on the imaging studies demonstrated that the above presentation of neurologic illness is the result ofhyponatremia and its correction. The authors conclude that imaging studies performed early during the illness may be unremarkable, but still a diagnosis of central pontine myelinolysis should be suspected and, most importantly, a repeat imaging study might be required in 10-14 days to establish the diagnosis of central pontine myelinolysis. (+info)

15/105. methylphenidate treatment of neuropsychiatric symptoms of central and extrapontine myelinolysis.

OBJECTIVE: Previous reports describe the presentation and course of theneurobehavioral manifestations of central and extrapontine myelinolysis; as of yet, however, there are no specific recommendations for treatment of these problems. We offer the first report of successful treatment. METHOD: We describe a 55-year-old man with chronic alcoholism who developed central and extrapontine myelinolysis following an episode of heavy drinking and rapid correction of hyponatremia. The patient acutely developed motor, cognitive, emotional and behavioral problems best accounted for by central pontine and bilateral striatal myelinolysis. These neuropsychiatric symptoms were treated with methylphenidate over the course of 1 month in an off-on-off-on fashion. The Neuropsychiatric Inventory and other tests were used to assess treatment response. RESULTS: Marked improvements in the patient’s neuropsychiatric status were noted only during treatment with methylphenidate. CONCLUSIONS: methylphenidate effectively reversed the neuropsychiatric symptoms associated with the patient’s demyelinating lesions. We discuss possible underlying mechanisms of both symptom formation and treatment effect. (+info)

16/105. Slowly progressive dystonia following central pontine and extrapontine myelinolysis.

A 28-year-old woman was hospitalized with dysarthria and oro-mandibular and upper limb dystonia. Approximately 8 years prior to the current admission, the woman became severely hyponatremic due to traumatic subarachnoid hemorrhage-related SIADH. brainMRIs showed a signal increase in the central ponsthalamus and striatum on T2 weighted images compatible with central pontine and extrapontine myelinolysis. From a few months after that event, dystonia progressed slowly over the subsequent 8 years. We speculate that the particular damage chiefly to the myelin structures by myelinolytic process may have caused an extremely slow plastic reorganization of the neural structures, giving rise to progressive dystonia. (+info)

17/105. Central and extrapontine myelinolysis in a patient in spite of a careful correction of hyponatremia.

We report the case of a 54-year-old alcoholic female patient who was hospitalized for neurologic alterations along with a severe hyponatremia (plasma Na+: 97 mEq/l). She suffered from potomania and was given, a few days before admission, a thiazide diuretic for hypertension. A careful correction of plasma Na+ levels was initiated over a 48-hour period (rate of correction < 10 mEq/l/24h) in order to avoid brain demyelination. After a 2-day period of clinical improvement, her neurologic condition started to deteriorate. By the 5th day of admission, she became tetraplegic, presented pseudobulbar palsyataxia, strabism, extrapyramidal stiffness and clouding of consciousness. Scintigraphic and MRI investigations demonstrated pontine and extrapontine lesions associated with Gayet-wernicke encephalopathy. After correction of ionic disorders (hyponatremia, hypokaliemia) and vitamin B (thiamine) deficiency, the patient almost completely recovered without notable disabilities. This case illustrates that profound hyponatremia, in a paradigm of slow onset, can be compatible with life. It also demonstrates that demyelinating lesions, usually considered as a consequence of a too fast correction ofhyponatremia, may occur despite the strict observance of recent guidelines. There is increasing evidence to suggest that pontine swelling and dysfunction may sometimes occur in alcoholic patients even in absence of disturbance in plasma Na+ levels. It is therefore of importance, while managing a hyponatremic alcoholic patient, to identify additional risk factors (hypokaliemia, hypophosphoremia, seizure-induced hypoxemia,malnutrition with vitamin b deficiency) for brain demyelination and to correct them appropriately. (+info)

18/105. Central pontine myelinolysis.

Central pontine myelinolysis (CPM), a neurologic disorder caused most frequently by rapid correction of hyponatremia, is characterized by demyelination that affects the central portion of the base of the pons. There are no inflammatory changes, and blood vesselsare normal. Clinical features usually reflect damage to the descending motor tracts and include spastic tetraparesis, pseudobulbar paralysis, and the locked-in syndrome.magnetic resonance imaging of the brain, the imaging procedure of choice, shows an area of prolonged T1 and T2 relaxation in the central pons, which may have a characteristic shape. Recovery varies, ranging from no improvement to substantial improvement. To avoid CPM, correction of serum sodium in patients with hyponatremia should not exceed 12 mEq/24 h. We describe a case of CPM in a hyponatremic patient who presented with a cerebellar syndrome with no pyramidal tract involvement and in whom the rate of correction of serum sodium was within the recommended limits. (+info)

19/105. Reversible central pontine and extrapontine myelinolysis in a 16-year-old girl.

A rare case of an osmotic demyelination syndrome in a 16-year-old girl is presented. MRI in the acute stage revealed a focal abnormal signal within the basis pontis and both caudate nuclei and putamina. Two years later brain lesions had disappeared on T1- and T2-weighted imaging, indicating that central pontine and extrapontine myelinolysis may be completely reversible. (+info)

20/105. Decreased diffusion in central pontine myelinolysis.

Two patients with central pontine myelinolysis (CPM) were studied with diffusion-weighted MR imaging 1 week after onset of tetraplegia. In both patients, affected white matter showed hyperintensity on diffusion-weighted images associated with a decrease in apparent diffusion coefficient (ADC) values. In one patient studied serially, ADC values normalized by 3 weeks after tetraplegia. Early in the clinical course, diagnosis of CPM can sometimes be difficult. Hyperintensity on diffusion-weighted images may therefore have diagnostic utility. Decreased lesional ADC values support the notion that CPM is a consequence of relative intracellular hypotonicity. (+info)

Having my Cake:

The past few days, I’ve had a hard time understanding things.

I don’t know if I’ve explained this issue previously, but I’ll take some time to revisit it.

When I first developed EPM, one of the biggest signals to me that there was something majorly wrong was that I wasn’t able to form words.. I wasn’t able to make sense or explain things, and I was also having a very hard time understanding what other people were saying to me. It wasn’t that I couldn’t hear them. I could, but what they were saying wasn’t registering.

In the past 10 months, that has improved, but I still have periods where I have great difficulty understanding things. It just doesn’t register.

These issues tend to happen when I’m under greater stress or really tired. Fatigue and stress don’t cause them; they just get worse.

It’s a catch 22 because when I’m really stressed, well I really want to post what’s going on.

I guess this means, please forgive any rambling or if this doesn’t really make a lot of sense.

First, I want to clarify from my previous post for those who really don’t know me: I don’t drink. I for whatever crazy reason love  to make comments about drinking.  Maybe I’m subconsciously wanting to become an alcoholic, but I don’t have the ability to do it.

Sorry, I shouldn’t make light of being an alcoholic. I know way too many of them, and it’s a hard disease to live with.

That said, I make references to drinking, but I VERY rarely ever drink. I get sick when I drink, and so only drink on very rare occasions and never more than one or two drinks at a time.

It suddenly dawned on me today that people might actually read my blogs and think that I’m really an alcoholic or “drowning” my sorrows in alcohol, and I wanted to clarify. I drank a beer, and literally shed a few tears.

I did not spend the night crying myself to sleep nor did I drink myself into a drunken stupor.

Actually, I drank a beer, cried a few tears, AND ate about 5 tablespoons of Ben and Jerry’s…can’t remember the name of it, but it had cookies in it…chocolate chip cookies. And it was pretty damn good ice cream.

Really folks, I don’t know what’s more depressing the fact that I literally called my last post “drowning my sorrows” or the fact that I had any sorrows to drown.

Moving on, I have no idea what the cake reference was in regards to. I had this post planned in my head around 5pm, and now I can’t remember what it was about.

I wanted to clarify the alcohol references. I’m hoping as I type what I think, I’ll remember what it was I wanted to say about cake.

OH. Bingo.

It’s come to my attention that my memory sucks. Ha. How ironic?! I was going to post about how bad my memory is and I couldn’t remember it…HA. You GOTTA love that. HA! I am literally laughing out loud. 🙂

Hopefully, you are too because if you have CPM/EPM there are very few things that you can really laugh about.

Ok, so settle down because this is the meat of my post:

My memory sucks. I know it sucks way more than most other people know it.

I KNOW my memory sucks, but that doesn’t mean that I don’t remember anything at all. Right?

Previous to my injury I could recall everything. There were very few things that I would need to write down. I could recall great details in everything, everything.

Now, I know that’s not the case. Just ask CVS who has called me for over 3 weeks, 3 times a day to pick up my prescription medications.  They were literally calling me three times a day.

I made it my intention to pick up the prescriptions every day, but I forgot, everyday. There were days that I literally DROVE past the place not once by several times, and I still forgot to pick up the prescriptions.

I started having extreme anxiety over getting the prescriptions, and every night I would sit down on my couch or lay down in my bed and think: SHIT, I forgot those FREAKING prescriptions AGAIN. I’ll have to do it tomorrow.

And then I would forget again tomorrow.

Guess what? I finally picked up the prescriptions. Yep, yesterday. Guess what? The reason I was getting three calls a day was because I had three prescriptions to pick up. Guess what? I could not remember dropping them off. I had NO recollection of dropping them off. I thought I was going to pick up my thyroid medication because I’m almost out of them, and I thought, “CVS is calling me because I called in my thyroid prescription a few weeks ago because I knew I would forget calling it in and I wanted to make sure I had them before I run out”.

Guess what? It wasn’t my thyroid medication.

FREAK. The cycle begins again!

This is just the TIP of the iceberg regarding how my memory has been effected by EPM.

I know I don’t remember things, BUT I also do not want to admit that I don’t remember things!!

So how does this insanity work?

I want my cake and I want to eat it too!

I want people to understand that I have memory issues, but I don’t want to admit that I “forgot” something when I do. Guess how well that is working?

Folks, I really believe that I remember things better than what other people account that I do, but I also realize that have limitations, but I do not want to account for what other people tell me that my limitations are.

And so begins the paranoia and my frustration and my anger and all the crap that you can associate with slowly losing your mind.

My pride and mind is telling me that I remember all of the times that I forget. I think, I may not remember when I need to, but I do remember at some point, and that is good enough.

But then, I was in my car today driving to the health food store, and I couldn’t remember what the two things that I needed to remember were. It wasn’t the things that I was going to buy from the health food store. I really felt I would remember those things, but I needed to do two things today, and I still have no idea what those two things are. Or if there are actually only two things that I really need to remember.

Of course, I got to the health food store and I didn’t remember all of the things I actually went there to buy because I thought, there aren’t that many things, so I won’t forget any of them.  I don’t need to make a list because I can manage just picking up a few things at the store. (See, I even try to delude myself into thinking that my memory issues aren’t that bad.)

So here’s the craziness. I KNOW I HAVE MEMORY ISSUES, I KNOW IT, but I DON’T WANT TO BELIEVE WHEN OTHER PEOPLE TELL ME THAT I’M NOT REMEMBERING CORRECTLY.

I’m NOT WRONG. THEY ARE. And to make things truly crazy, THEY KNOW I HAVE MEMORY ISSUES AND SO THEY ARE LYING TO ME AND ARE TRYING TO TAKE ADVANTAGE OF THOSE MEMORY ISSUES.

Folks, this is how it is. This is how insanity works.

I do not know when people are taking advantage of my brain damage, when I’m wrong, when I’m right, when someone else is lying to me.

Unless, I carry a voice recorder around everywhere I go, I do not have any proof as to whether or not someone said this or didn’t say that.

I really believe people are taking advantage of my memory disability, but how do I know? What if it is just me? What if I’m not remembering as much as I think I remember?

I have Alzheimer’s, dementia, and paranoia all wrapped into one neat little package called EPM. OR people are exploiting my weakness and disability.

TRY FIGURING THIS ONE OUT FOLKS!! Is it ME or THEM? And how do you tell?

This doesn’t even touch the fact that I am LOSING memories. I’m losing precious events in my life that I CAN NOT remember. I can not remember if I took a close friend out for her birthday lunch. I really can’t remember it, and if I can’t remember that then how many other MUNDANE, unimportant things am I forgetting?

I leave you that little gem to think about because if you don’t have CPM/EPM, but a member of your family or friend does, consider what type of insanity they are facing every day before you get angry when they ask you for the twelfth time today, what’s for dinner?

Just think, almost everyone who is over the ago of 60 is experiencing some form of memory loss or dementia, YOU could be that person one day, and how will you feel when you start to lose your mind?

(To my CPM/EPM friends: I just want to let you know, there is hope with these issues. I’m not saying they are going away, but I’m learning skills to deal with them through, my absolutely amazing cognitive therapist, Angela C. God Bless, her! I think she’s going to buy me a life time supply of post it notes 🙂 Love to Angela 🙂   )

Drowning my sorrows:

Well folks, there are those days that make you stop and wonder why you couldn’t have been born a Romney.

It’s amazing for me to think that I should be one of the 1 billion people in the world that should have everything handed to me on a silver platter, but I wonder why I wasn’t.

I don’t know where this sense of entitlement originated. My parents were poor. I never had extravagant things growing up. I was happy until the age of 15 wearing my cousin’s hand me down clothing.

After that point, I wasn’t happy with anything. I was a teenager.

So, why is it today I feel an absolute sense of envy of all of those people I believe have more than me or who have never struggled. Is it human nature? Is it me?

Today, I got the news that my younger cousin is graduating from medical school. I am extremely proud of her. She’s always worked really hard. She is smart, beautiful talented, but I have this OVERWHELMING sense of envy.

I’ve wanted to go to medical school for the past 8 years, not because of the lucrative income, but because I’ve wanted to make people BETTER.

I’ve wanted it more than anything. I’ve worked HARD to try to get it over the past 7 years, and just when it seems like I was going to make it, I was given EPM.

I went back to  school full time, worked full time, while taking care of my family just so that I could become a doctor.

I took out TONS in student loans, sacrificing vacations, time with my family and developing friendships, with the goal to become a doctor. I wanted to make a difference in people’s lives.

Last June, I was scheduled to take the MCAT. I was facing the prospect of FINALLY making it, then I was told that I had a pituitary tumor that needed to be removed.

The pituitary tumor was going to be the ANSWER to all of my past medical issues. It really answered everything, and once I had it taken out, there would be nothing stopping me. I would regain some of my health and within a few months I would be able to take the MCAT.

Of course, I knew that by removing the pituitary tumor, I wouldn’t gain absolute perfect health. I still have ongoing issues with autoimmune problems (caused by Cushing’s Disease), but I’ve always been able to work through my going health issues to do what I need to do. My health wouldn’t get worse.

All of this has changed when I developed EPM.

I am still working towards the goal of getting into medical school, but now that goal seems ridiculous, and this time I feel like I might not be able to recover to the point of where I was before.

I struggle with working 5 hour shifts at my current job, working less than 20 hours a week! If I struggle with working my current job, then how am I going to make it through medical school and residency. I don’t know, and it’s so distressing to realize that this dream is fading from my life.

I try to push the negative doubting from my mind each day, but any time I really think about it,  I know that I’m climbing a mountain of ice while wearing roller skates.

Still, I’m pushing blindly forward with my goal, but I know what I’m facing, and I don’t know how I’m going to overcome these odds.

Because of this, I’m drinking away my sorrows tonight. I know that this isn’t going to solve anything, of course, but today it seems like everything I’ve worked towards in the past 7 years has been washed away, and I’m looking at a vast empty space.

(Let me clarify this: I don’t drink alcohol. I get sick if I do, so by saying I’m drinking away my sorrows, I mean I’m having a beer. Yeah, I know…it’s pretty pathetic, but maybe it will help me to feel better.)

I am wallowing in self pity, and I’m wondering; WHY? Why is it that I face such adversity in my life? It ISN’T FAIR!!!

I grew up impoverished, with an abusive, alcoholic father and a victimized mother. I was assaulted when I was 18 and became a single parent. I was in an unfortunate relationship when I was 22 and placed another child for adoption. I found and loved the person I believed was my soul mate, but he died suddenly. After years of handling everything on my own, I found my significant other, but our relationship has been anything but perfect, and after overcoming all of those obstacles, I became ill. Once I get the answer as to why I’ve been sick for so long and have a possible treatment, the surgery for it leads (through the incorrect treatment of hyponatremia) to my developing possible permanent brain damage. Instead of getting better, I become significantly disabled. LIFE ISN’T FAIR!! My life isn’t fair.

WHY THE F__K DO THESE HORRIBLE THINGS HAPPEN TO ME? WHAT DID I DO TO DESERVE THIS LIFE?

Just when everything felt like it was about to fall into place, my life was turned completely upside down.

The only good thing about getting knocked down so many times, is that you’re an expert at getting back up; however it’s never easy.

Tonight, is one of those days when I’m stumbling back down.

I love my cousin, and I’m happy for her success, but I have to stop and wonder; Why can’t I ever get a break?

Am I so far off course in my life that God has no choice but to slam me to the ground every chance He gets?

I wish I had the answer to that.

I should be celebrating my cousin’s success, but instead I’m wiping away tears and drinking away my sorrows. (AND I CAN’T EVEN REALLY DRINK AWAY MY SORROWS BECAUSE ALCOHOL MAKES ME SICK…isn’t that pathetic…)

I hope this finds you in better health than me, and in a position of less envy. Cheers!

 

Late onset symptoms:

It’s a two-for tonight 🙂

But, this post will be extremely short! I will try to expand on it as I find out more.

I think I mentioned this in previous posts, but I’ve been told by so many medical professionals that once the CPM/EPM has occurred no further damage will happen, and there won’t be any progression in symptoms.

This information was contradicted by my former mentor, Jeffrey Amitin. He had CPM for about 10 years before he died, and he explained that over the years some things got better, but other symptoms developed later. He was absolutely certain these symptoms were caused by CPM/EPM.

I’ve had others tell me that they’ve experienced the same thing, progression of symptoms. Usually these are issues with movements, but they also described problems with loss of consciousness, etc.

I have also experienced delayed onset of symptoms with cramping, tremors, jerks, spasms, etc.

Again, I was told that these issues could not possibly be related to CPM/EPM because they believe once the injury occurs, there is no further damage.

I have found subsequent articles that disagree with this, and I believe I’ve published them previously in my blog. Well, actually, I published something to that effect tonight about a research article that showed a person developed new symptoms 6 months after the injury.

So, I just found another publication that noted a person who developed significant symptoms 10 MONTHS after the injury!!! Further, the MRI that they did showed a kind of disintegration to the basal ganglia area.

Here is the link:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1074115/pdf/jnnpsyc00004-0119.pdf

Now, I don’t like the link because it does not have all of the article, and I will have to research it further to obtain where it comes from, etc, but I wanted to get this information posted before I “lost” it.

Thanks for reading, and I hope this is a step in the right direction for bringing more awareness about damage that occurs from CPM/EPM after the initial injury heals.

 

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

 

What was I thinking:

Ok, I hope you can relate to what I’m going to post tonight, but maybe you won’t. Here’s the thing, I really don’t know what’s “normal” or what’s not normal in regards to my experiences after brain injury.

I had another appointment with my cognitive therapist this week, and God bless her (Angela C.) I’m not sure how she does what she does because if her patients are anything like me, then there’s a whole lot of craziness that comes through her door each day 🙂

I really have to give her kudos because I don’t know what her “role” is in my actual therapy. She’s obviously there to help me rebuild or learn to navigate through the changes that have happened after my injury, but I swear I threw a curve ball by asking her about the emotional craziness I’ve been dealing with over the past 10 months. I have to say she not only handled my emotional unraveling with professional grace, but she provided me with excellent advice.

As I mentioned before, she is above and beyond what I could ever ask for, so much so that I both forward and slightly dread meeting with her.

Now, doesn’t that seem a bit contradictory? Nope not really..let me explain.

I love going to my sessions because I know I’m going to get somewhere, make a step forward that I need, but I also end up tearing up about 5 times during our 45 minute to hour long session, and if there’s anything I hate to do, it’s to lose control of my emotions in front of other people.

My last session with Angela was no different, and to make matters slightly worse, I confided in her regarding my somewhat lack of ability to control my impulses.

I developed the brain injury in June, and one of the first issues I experienced with impulse control was in September.

I very suddenly decided to go to Jeffrey’s funeral. (Jeffrey had CPM, and was a very big source of support for those of us who have CPM/EPM.) He died very unexpectedly from an issue related to CPM.

I wanted to go to his funeral, but it was a very long drive and I was not supposed to drive alone because of the neurological issues that I had. It was extremely dangerous, and I was going to be alone. It was overall not a great idea!

But, I decided to go and I went. Well, about an hour into my drive, I thought, it was going very well, and wouldn’t it be great to travel across the country.

So, I called Tom, and told him I wasn’t going to go just to the funeral, and that I didn’t know when I was going to be home. I wanted to visit family and friends and see things that I’ve always wanted to see, like the Grand Canyon.

I didn’t even have more than 2 days worth of clothes with me. I was only going to the funeral and then straight back home the next day.

There are so many absolutely crazy things with that decision, but to name a few; lack of money, traveling alone, not having clothes or toiletries, not knowing where I was going or where I was going to stay….really folks the list quite extensive on why this was an absolutely crazy thing to do. But at the time, it didn’t seem crazy at all.

Fast forward several months, and I was on the way to return something to a store with my son. There was a pet store that was on the way. We stopped inside. I had NO intention of buying a pet, but after an hour, we were walking out with a puppy and about $200 in puppy supplies.

Now, anyone in my family could tell you, this was nuts. I would never spend money like that on a pure breed dog, let alone GET a dog.

The list really does go on and on with decisions that I am constantly making every day that is beyond my old scope of reason, as well as my ongoing dwelling on decisions. It takes me at least 3 times as long to try to make a simple decision.

SO, I was sitting in front of Angela explaining all of my crazy impulse issues, along with my recent sudden decision to end my relationship with Tom, and wanting to know if I was losing it…was this normal? Were these issues being caused by the brain injury or am I losing my mind in other ways?

Now that has to be a hard question to answer.

Of course, I’m distraught. Over the past 10 months, I’ve felt like I don’t know who I am any more. I’m not sure what’s wrong with me. I don’t know if what I’m experiencing is “normal”, or if I’m losing my mind.

Has the brain injury changed me? Or am I changed because of the brain injury?

To me, it’s hard to distinguish between the two, so let me try to explain a little bit more about what exactly what I mean by that.

Having the brain injury change me, who I am and what I think, is something I can’t control. It’s something that I have to learn to manage and live with.

If I have changed because of the brain injury, then I am now making alternate, conscious decisions to do things differently because of some realization that my life is finite or live every day to the fullest type of mentality. I am in control. I am just choosing to do things differently because of the experience that I lived through.

I have always been a  very responsible person. I’ve always made decisions that are in the best of interest in my family or myself, but I am not doing that now. I’m struggling to control my actions or failing completely at controlling them, and this is all extremely stressful to me.

What’s happening?!

This is what I was asking Angela, and it’s a difficult for any person to answer let alone a person who has only seen you 4 times, but she handled the question with great tact, and she gave solid advice…which is why I give her major kudos. If someone approached me with a similar question, I don’t know if I would have been able to give them a great answer.

She does think there is a physical response to the brain injury and issues with dopamine receptors in the brain…and this makes sense because I have other issues with tremors, shakes, jerks, spasms that are also from the brain injury that are also linked to dopamine receptors in the brain.

However, she also said that there is probably a psychological “root” to my current impulse issue which she explained with such extreme accuracy that it makes me think she is psychic. Either she has access to a medical history that I didn’t think was available to anyone, or she is totally psychic because she so accurately described my history that I wondered if she was related to me in some secret way.

I really don’t know how she did it.

That said, she advised me to not make any impulsive decisions for awhile. She told me that I was going to have to tell my inner child, “NO”.

I really think that’s going to be easier said than done.

Now, I’m going to go a little bit more in depth to why I’m feeling especially crazy since the brain injury, and this is something that I didn’t discuss with Angela, but I really think it’s important to bring up before I forget it again.

In the past few months, I’ve had this emotional disconnect from things, and it’s something that I really can’t explain.

It’s this growing ability to get angry quickly as well as feel completely void of feeling at times when I should feel something.

When I was being treated for EPM in the hospital, I felt his overwhelming sense of compassion, understanding and love for everyone, but now, I feel this lack of feeling for things, but I also tend to experience periods of inappropriate tearing.

I don’t really “cry” a lot, but my eyes will well with “tears”. This happens a lot when I discuss personal issues with my boss, which is a time that I really don’t want to be on verge of crying.

Seriously, I have such a lack of control of this at this point. It seems I have no middle ground. Either, I feel nothing, feel completely angry or am on the verge of crying.

It’s such an extreme range of emotions, but the one emotion that I haven’t really felt since having this injury (outside of the hospital) is a sense of love or happiness.

Now, right now, I’m blaming this issue on Tom. I’ve convinced myself that I’m not happy because of the stress in my relationship with him, but I have to pause to wonder if what I’ve always said is true: the only person who can make you happy is you.

If that’s the truth, then why I am not I happy? Why are the only major emotions I feel right now anger or frustration? Why am I so irritable over every little thing? Why am I going pretty much from one extreme to the other? Is this being caused by the brain injury? And if so, how will I get past it?

I do believe the brain injury has something to do with it. I’ve read a lot about how people with EPM/CPM tend to experience a shift in their personalities, but I really don’t remember everything I’ve read about it, and I am finding less and less time to research 😦

That said, I am hoping to look into this further, but I also HATE to make excuses for my behavior. I really believe ultimately that people have control of their decisions, etc and how the act.

I would LOVE your feedback regarding this post because truly this is one of the things that really eats at me. Are you experiencing anything that is similar? Have you noticed changes in yourself or your loved one with CPM/EPM? Are all of the things I discussed tonight just happening to me?

Let me know!

My Videos:

Hey folks, this is just a snippet of the movement issues that I have on a daily basis. These issues become extremely obvious after I developed CPM/EPM.

Let me know what you think when you have time. Hopefully, you can share if you have the same type of experience.

 

http://youtu.be/lPc3XHXlims

http://youtu.be/SawcRiIEGEI

This last one it’s hard to determine what’s moving because I’m shaking so badly while I’m taking the video. The key thing to look for is that my thumb is twitching, and I think this also shows the pill like rolling that people with early forms of Parkinson’s develop. I’m not a medical expert, so I’m just guessing at this last part; however, these types of jerks did not present until after I developed EPM.

http://youtu.be/FXM5CN6wID0

Going a little bit Crazy:

I have hit a stress maximum today. I’m sure you might understand what I’m talking about, maybe not. If you have a brain injury or CPM/EPM, you might be able to relate more to this.

No matter who you are or where you come from in life, you are always going to experience good and bad days. That’s just how life works, but when you hit that wall where you feel like you can’t handle one more thing, what do you do?

If you’re like me, right now, I have a tendency to run away. Truly, that’s what I like to do. I will pack my bags and leave. I won’t even have a certain agenda in mind. It just sounds better, feels easier than dealing with the problems at hand.

Guess what? It doesn’t work.

You might feel better for a little bit. In my case, it doesn’t work at all.

Here’s why: I have a brain injury, so putting things out of my mind…well that’s easy. It really is, but keeping them from erupting at any moment that’s harder to control.

Let me give you a few examples:

Today started off on a very positive note. I took an Ambien last night, so I slept well. I slept in pretty late. And as with every morning, I wake up completely empty headed, like Dora from Finding Nemo.

I greeted my 6 month old puppy, Toffee, with enthusiasm and let her out of her cage, gave her several minutes of undivided attention, placed her on the floor and walked into the kitchen. She followed.

Without even thinking about things, I already felt overwhelmed. Toffee needed food and water. I needed to take my medications. I knew I had a list of things to do, but couldn’t remember anything that I wanted to do today. There was a missed call and a message I needed to listen to on voice mail.

At one point in time in my life, I would have been able to handle these tasks in a moment…boom, boom, boom, done, done, done. Now, I look at the flashing light indicating a message, watch the excited puppy, look around my kitchen in a confused look, not knowing exactly what I needed to handle first or next.

I pick up the phone to dial my VM. I clean out the puppy’s dishes and give her water.

The VM was from my cognitive therapist’s office asking if they could move up my appointment to 10 am or 11am. Ha, it’s already 11:30. The message asked me to call them back to let them know. Now, I feel guilty. Maybe I shouldn’t feel guilty, but I do. My therapist might have been able to go home early, have an extended lunch break if I had called their office back, but I didn’t even get out of bed until 11:30…so now what? Do I call their office back and explain? Do I explain when I go in?

I decide to put it out of my mind and get back to what…..what did I need to do?

(Truly, that’s how my thought process works.)

Excited puppy….she’s looking for love, attention..oh and food. Gave her a scoop of food. Began to walk out of the kitchen.

Wait, I needed to do something else. Medicine.

Started to pop open pill bottles…I think I took all the important ones. I need to eat something with my medications or I get an upset stomach, so I had a few chunks of honey dew melon and half a muffin.

Then I sat down, I was in a complete oblivion as to what to do next.

Hmmm…my cognitive therapy appointment was at 3. Tom was in the shower. My 3 year old daughter was asleep. The puppy was getting extended cuddle time because I had NO clue as to what to do next.

So, I experienced a time warp…this is basically where I apparently don’t do anything for an extended period of time except stare in to space. My mind is completely blank. Around 12:30, I realized I hadn’t really accomplished anything, so I took a shower. Apparently, I got dressed, and I went on Facebook and checked out my email.

When I got to my email, I realized: Oh, shit. I’m hosting my little sister’s baby shower! Yes, I am. It was almost simultaneously that I realized I also have to leave town Sunday night. I have to work Sunday night, and that makes for a really long night when I have to drive at least four hours after I’ve worked a 5 hour shift. And then I took a double dose of the oh, shit factor because I realized Saturday is when we’re doing Easter dinner with my mother-in-law and family. Guess who’s in charge of that?

These are just a few of the things that SUDDENLY popped into my head around 1:15. These are things that would have been at the forefront of my mental processing before I had brain damage. Now, these things magically disappear each night when I go to sleep and by the time I wake up in the morning, they’re still not there.

Ok, so my significant other brought in the mail, and it included several things I had ordered for my sisters baby shower, so this took my focus.

I’ve hosted baby showers before, but this was before my injury. I had no problem hosting things previously, but now I have an extremely difficult time visualizing what I need to do, and I feel the pressure.

(To give myself credit, about 6 months ago, I asked my Mom if I should throw the shower, but she told me everything was taken care of. About two weeks ago, I was told that this wasn’t exactly the case, and I volunteered to do it. Let’s face it, people tend to do things in May and June and this means that if you haven’t sent out invitations in February or March, the likely hood of people  going is greatly diminished..so now, I’m a bit frustrated and a bit rushed to get everything done. Ugh.)

So, I’m looking at the decorations and invitations that just arrived in the mail, and I don’t like the colors in either. My sister is having a little girl and the primary colors of the decorations and invitations are yellow, aqua and brown. SO, I spend the next hour searching online for different colors that aren’t dominant in the decorations…a light green and pink.

Because I’m thrifty, I keep going back and forth to different websites finding the decorations that I want, comparing prices and types of things that each vendor has. BUT here’s the problem, because I have issues with concentration, memory and focus, I can’t keep the prices and types of things from each website  straight. (Insert huge sigh).

I look at the clock it’s 2:15. Tom is taking my daughter to the doctor. I have to meet with my cognitive therapist, which I’m looking forward to. I haven’t had “lunch”, and I have to be at work at 6, so how is the rest of the day going to work?!

Do I have enough time to go through a drive thru on the way to my appointment? I have half an hour? What am I going to do after my appointment? Should I eat after my appointment? I have to work from 6pm to 11pm, so I’m not going to have a chance to eat dinner. Eating after my appointment would make sense. But, I also need to run to Party City to see if decorations are less expensive there. I get coupons for them, so I might save more money if they have the colors I want.

It is through this mental chaos that I remember two things: I am supposed to mail my MCAT accommodations request at the post office today, and I am supposed to bring my cognitive functioning test results to my appointment today.

FREAK!

It’s at this moment that I’m about to blow a mental gasket. I CAN’T REPROGRAM THE THINGS THAT I WAS GOING TO DO AND WHAT I NOW NEED TO DO!!! To add to my absolute moment of frustration, I can’t stop dwelling on the fact of how I once was able to do all of this stuff without any issue and now can’t, simply can’t remember these things each day.

To me, they aren’t little things. They’re important things. Things I needed to do today, but what happened to my mind during the first 3 hours of the day?

Ok, so now I have to rethink everything, but I CAN’T. So, I do the next best thing, I just DO whatever.

I go to the bedroom and find my test results. As I’m putting them in the proper order, I end up knocking over a stack of papers onto the floor. I look at the bed and realize I have the baby shower decorations scattered across it, but I don’t have time to put them away or to even think about where to put them…so I leave them.

I’m at the front door, when I realize that I forgot the MCAT accommodations request. I grab that, and as I’m walking out the door, I realize I left my purse on my bed.

When I get to my car, I still have no idea as to what I should do next. Lunch? Post Office? Do I have enough time to do both? I’m really hungry now.

I pull out of my condo complex. Which way do I go? One direction will lead to the closest fast food restaurant, the other will take me to the post office.

Decisions.

I pull towards the post office…the entire time thinking about if there are any other fast food restaurants along the way. There aren’t.

I get to the post office and successfully drop off the letter.

I have exactly 12 minutes till my appointment time, and it takes about 15 to get there. Pressure.

I pull into the cognitive therapists office. Get out of the car, lock the doors, get to the door, and then realize I left my testing packet in the front seat. I curse. Return to the car, get my packet and return to the office for my appointment, on time.

It’s at this moment that I feel pretty good.

Remember, I like the cognitive therapy. I really think it’s going to help me.

I explained to Angela that I’m feeling so frustrated because I truly can’t remember what I’ve posted about previously. I don’t remember. I also explained how I really want my blog to be helpful to other people.

So, we looked at it, and she gave me homework. I’m supposed to go through my posts and make a record of the topics that I’ve posted about, kind of like an index for me to reference to. Technically, I’m not supposed to post to my blog until I’ve done it.

Yeah, but here’s the deal: it seems like an overwhelming task. I’ve made over 40 posts. I have to “skim” over 40 posts and make a record before I make another post. (I haven’t skimmed over the 40 posts or made a record. Yes, I’m not following instructions).

And God love her, she gave me more work to do besides that. I have several work sheets that I have to complete before my next session. My next session is next Wednesday.

I really think the assignments she’s given me will be helpful, but I have Easter dinner to host. I have to work. I have to make such a long trip next week. I need to get the baby shower invitations in the mail. Oh, and I have finish my taxes.

By the time I reach my car, my mind is a complete blank again. What to do? Go home? Get something to eat? Go to Party City and then get something to eat? Go get something to eat and then go to Party City?

It was 4:15, and I had to be at work by 6.

I sit in my car for about 10 minutes not certain about what to do next, and then I do what I did earlier. I just start driving without any certainty about what I should do or will do, but at least I’m doing something.

I stop at the intersection. I turn right. Looks like I will be heading to Party City.

I took a wrong turn on the way, but this wrong turn took me to PennStation.  Fate, right. Yep, that’s what I had for lunch.

By the time, lunch was over, it was 5pm. I was at Party City by 5:15. The entire time I’m stressed because I have to be at work by 6. It’s rush hour. Will I have enough time to canvas the store and get to work?

It was the moment that I was parking my car, that I remembered: I have a merchandise credit for Party City for more than $40.00. It was also at that very moment that I realized I have NO FREAKING idea what I did with it. UGH!

This annoyance popped into my head and over took everything else.

Party City does not give you a little plastic card for your merchandise credit, they give you a paper receipt. I got a new purse after I made the return. It was a paper certificate.

I had absolutely no memory of it until today when I pulled into their parking lot. It was worth more than $40.00. FREAK. FREAK. FREAK.

Oh, yes folks. I have no idea where it is. It’s not in the papers that I transferred to my new purse. If I saw it at any point before this moment, I probably looked at it like trash and threw it away, and this is BUGGING me to death.

I am absolutely certain this is the reason Party City uses normal receipts as their merchandise certificates because the associate cautioned me: Don’t Lose it. If you lose it, there’ s nothing we can do.

I was tempted to just leave due to my absolute annoyance, but what if their prices were better than online? I would still be saving money.

After a quick investigation, I convinced myself that their prices were indeed better, and have determined that now I have to find the missing merchandise credit/receipt.

As I made it to work by 5:55, I felt exhausted and relieved, but that was short lived because my stats from work weren’t great. I have a commission based job and finding out how poorly I’ve performed this week, really put the pressure on to try to make things better tonight.

Things did go better tonight, but they weren’t good enough, so as I was driving home, everything that I have to do and accomplish in the next few days, has become seemingly impossible.

I really don’t remember all the things that I need to do. My mind is a blank. I think it’s selective processing to protect myself from a complete meltdown.

For instance, my daughter will need to have an endoscopy because of ongoing stomach issues. I forgot to pay the electric bill. I don’t think I paid the mortgage yet either. I really can’t remember. I need to finish getting things for Easter dinner. I need to make a list of things to do for the baby shower. I need to refill prescriptions. Make list of my appointments and what I’m going to discuss.

Oh, I also feel really guilty because I’ve been trying to get salivary cortisol tests submitted from my endocrinologist, but I will remember to do the test one night but forget it the subsequent night. The tests have to be submitted within a week or they’re not valid.

Well, I did the first salivary test Monday night, but forgot to do it Tuesday, so I went ahead and did it in the morning when I remembered that I forgot, and mailed it. Because I knew it would have to be repeated, yet again, I lied and said I did it at the right time. UGH. Now, I’m feeling guilty, but I would have felt equally guilty if I had to call and tell them I screwed it up again. So, do I tell my endocrinologist what I did? Will I have to repeat the cortisol testing again?

I also have to make several return phone calls and emails, but it just seems like there is soooo much other stuff that needs to be done that I really can’t stop to think of those things either.

Tomorrow is my day off, and I am at a complete loss as to what I should do next. There’s so so so much more that I am not remembering, like making a return to Kohl’s, going to the gym or meeting with my personal trainer…oh, the list is never ending and always expanding.

It’s now almost 1am, and instead of venting, I could have accomplished a half dozen things that I should have done, but my little girl is running a fever. I have a headache, and I feel the urge to delve into a pint of my favorite Ben and Jerry’s.

I’ll figure everything else out tomorrow (or in my case, later today 😉

And that’s what it’s like living with EPM. You spend a part of every day feeling just a little bit crazy.

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

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