Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Archive for the tag “parkinson’s disease”

27 Jul 2016
5 Comments

Therapy:

Recently, and by that I mean back in April, I think, I was told by my neurologist that you don’t stop recovering from a brain injury.

He said that there used to be a notion that recovery happens only during the first two years post brain injury. He said that isn’t true. He said, recovery can continue to occur post two years.

I don’t know.

I can’t say that I have seen monumental gains or even noticeable gains. However, I am doing more than I did two years ago.

There came a point about 2 to 2 1/2 years ago when I was busy watching everyone else live their life, and I was spending my days on the couch trying to figure out what to do with my life. I’m sure you are probably doing the same, if you haven’t already moved beyond that point.

I would spend a lot of my time surfing social media, FB, and I was so envious of all of my friends and family that were living lives without a brain injury. They were going on vacation. They were participating in 5k’s, marathons, or even triathlons. Yes, they were going back to school, graduating from nursing school, medical school, or having more children.

My life was at a standstill, and I thought, I could spend the rest of my life sitting on this couch in my living room, or I could do something different.

Several of my doctors recommended therapy…aquatic physical therapy….boxing, biking, and others had been mentioned. I had already completed occupational, cognitive, and speech therapy. My insurance stopped paying for it, and I wasn’t getting anything out of it anyway. I don’t have access to Rock boxing near me, but here is a link for it, just in case you do:

Home

This is a program designed for those of us with movement disorders similar to Parkinson’s.  They have locations through out the U.S. I don’t believe that you need to have a prescription from your doctor, and other than that, I would recommend using the link to find more information.

Aquatic physical therapy is good for those of us who have limited range of motion and balance issues. You would need a prescription for that.

There have been significant improvements with movement issues caused by brain injuries after riding bikes.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4557094/

http://www.medscape.com/viewarticle/751998

This is a research article that explains how it helps with Tremors and Bradykinesia.

http://commons.pacificu.edu/cgi/viewcontent.cgi?article=1433&context=pa

It is also helps with balance. Now, from what I understand, if you do not have fantastic balance to start off with, go for a stationary bike. One of our CPM friends, Todd, has been biking for years,and he has said for years that it has helped him. Turns out, he’s not the only one seeing improvements with movement issues after cycling.

For me, I started walking. Now, there a gazillion reasons to get out and walk. It lowers BP, raises endorphins, lowers stress, etc. For me, I had to start off with just 1/2 a block. That was it. It was hard. It was a bit depressing because I would compare it to what I had been able to do pre-brain injury. Here’s the thing: DON’T DO THAT!!!! Do NOT compare your current self to your past self. There is absolutely NO good that will come of it.

As my daughter says, “You get what you get. You don’t throw a fit.” Yes, that’s easier said than done, but practice it. Even if we didn’t have a brain injury, comparing our former selves to our current selves, NEVER solves anything. It just doesn’t.

We’ve been given this life, and we’ve been given this struggle, but here’s the thing, if not this, it would have been something else at some other point in time. Cancer. Diabetes. Heart attack. Stroke.

So, we’ve got to suck it up and move on.

These therapies above, they won’t make turn you back into your old self, but they might help you move beyond what you have to deal with today. They will help. They will make you mentally stronger, if not physically stronger. They will give you the determination to succeed against the body that does not work with you as much as it once had.

And it is not easy. I promise you, it will hurt. Your muscles will hurt. You will get tired. You might even get angry, especially if you compare your current self to your old self. Hopefully, you will have a fantastic group of friends, family, and hopefully, a loving spouse to motivate you to keep working. Actually, you need to have a friend or spouse or someone to go with you. Trust me, you don’t want a broken leg or a bump on the head because you lost your balance…at least to start.

My first attempt at this was walking. I added more and more distance, and when I finally mastered about an hour walk a day, I started adding more tedious trails. Again, I did not do this alone. I had a good friend who went with me. It was important. Remember, this is not a contest: Pace yourself.

If you can, especially in the beginning, see a massage therapist. They will help work out the kinks that don’t seem to want to unkink on their own. Take about 400mg of magnesium with about 200mg of calcium. This will also help with cramping.

And maybe take an Aleve or Advil before or after you go, with food, because it can cause gastritis if you don’t eat. This will also help with muscle pain and cramping. Just don’t take those for too long because they can lead to stomach, kidney, and liver problems with long term use.

In the end, 2 years post starting exercising, I STILL have cramping within the first 50 yards of my hike or swim.  (I just started cycling, but I look like a drunk monkey because my balance is so bad- HA!) So, I can’t promise that the cramping or pain will stop, but you will develop the determination and the mental fortitude to keep going despite the pain because WE ARE STRONG. We are survivors!

Please contact me if you want more information on any therapies.

Posted in Life with CPM/EPM and tagged , , , , , , , ,
18 Dec 2012
1 Comment

Todd’s story (symptoms):

I am really impressed with how well Todd is doing. He really has made  such a dramatic recovery. It really gives us hope that if you have CPM, you can make great strides. So, Todd developed CPM in December of 2007/Jan of 2008.

Please see his story regarding the progression of his injury.

The following is a series of questions and answer regarding his symptoms:

I think your “addiction” to cycling is fantastic.

I am trying to do everything in moderation.

I hope you are doing well. If you can, if you can give a detailed account of your experiences to date. It seems like you’ve made a great recovery. Do you attribute that to anything? Any certain treatment? Any medications?

Deep down inside of me, I really believe it was God’s way of telling me “You have had enough scotch and Copenhagen”, although I have relapsed once one scotch and twice on beer, never on Copenhagen.  I once asked a X-Camel Straight smoker (may he RIP) after 17 years nicotine free if he ever missed it?  His verbal response was kind but his nonverbal wanted to rip my head off for asking such a stupid question.

The only medication that may have made a difference was the Carb-levadopa.  I was on that until I saw Dr. Bajwa, the local Parkinson’s expert, we weaned me off. (Jan 2008-Sept 2008).  He also diagnosed me with the Parkinsonism.  I have a functional left hand that has issues with a now overextended thumb.  I do not know if it was because of the CPM or the nasty restraints that I had to wear in the hospital.  At the time, I could not communicate, but I was extremely worried I was going to lose function in my hands because of the restraints.

Do you have any ongoing issues with movements? like cramping, spasms, jerks, etc. Do you have any ongoing issues with memory, concentration or learning? How about issues with vision, heart rate, hearing? Do your symptoms remain constant or do they come and go?

Cramping from my spinning.  Early on I had slight issues with memory.  While in the hospital, I always saw a yellow hew.  I have a constant ringing in my ears, which I do not think is CPM related.  I do experience thoratic pain some nights.  My bum left hand also experiences a dull pain and stiffness.  My facial expression is always straining and I have a constant primitive noise that I make and I stutter when excited.

Do you do any therapy or did you do so after being released from the hospital?

I did Occupational, Physical, speech and recreational while at Bethesda.  I continued with speech for an additional 3-6 months going through 3 therapists.  Last summer I spent $ to get a 4 year/40,000 mile tune up with the last and best of the 3 speech therapists.  Everyone tells me my speech is fine, but that is B as in B, S as in S.

Have you met any doctors that have helped with your condition, neurologists/ GP?

I haven’t seen a neurologist since Bajwa, to get off the Carb-Levadopa.  I take the mini aspirin, B-complex, Multi-Vitamin, chondroitin and glucosamine.

Have  you experienced new symptoms or have you had continuous improvements?

I only thing that may be new is the pain in my left hand.  I started doing what I call “old folkies” yoga in 2008.

“Old Folkies” because at 52, I am the youngest there.  Recently I am trying to do “Real” yoga, “real” because I am the oldest there.  Also am trying to do core and muscle classes at last 2 times a week striving to reach 3-4X a week.  I DEFINITELY do feel better exercising (just do not tell my Life Partner).

Have you met any new people with CPM/EPM?

I have personally met M, which was fabulous.  It was like a first date:  seemed like less than a minute in over 2 hours.  I have wanted to go and meet D (about 20 minutes from my Mom) but didn’t pursue that.

Did you have any treatments immediately following the injury? Like, hyperbariatric treatments, plasmaphoresis, anti inflammatory meds?

The only thing I can remember is the Carb-levadopa and Multivitamins.

Conversation continued (Sorry about some repeats, I didn’t remember asking the questions before):

Do you have issues with understanding with verbal directions or written directions compared to what might have happened prior to the injury?

No, I always had and still do have a great sense of direction.

Do you forget stories or movies or articles or recognize faces but forget the plot?

No, if I did, it would be more age related.

Do you have jerks and twitches?

No.

Do you have issues sleeping?

I do have sleeping issues that I am trying to figure out without seeing a Doctor. In a perfect world, I need 6-7 hours of sleep. I use to wake up to my life partner coming to bed—I sleep through that now. I have been going to bed at 10:30 and waking at 4:00. I have finally decided I am going to get up at 4:00 and try not to nap. I have a clean conscious—If tired, I can fall asleep anytime anywhere in an instant.

Do you find yourself easily distracted?

No.

Have you had issues with managing your finances, forgetting to pay bills or paying them more than once?

The only issue that I have had: We took some money out of an IRA to pay for college tuition. Forgot to tell my accountant.

Do you need help doing any daily activities, like grocery shopping?

No. Although everything is more difficult to do: Dressing, tying shoes, cooking.

Have you had irregular heart rates?

No.

Have you had hallucinations?

No.

Have you had any blackout periods?

No.

Have you had any weight gain?

No.

Have you had any issues with visual problems with blurriness?

No.

(Ringing of the ears does happen with CPM/EPM. It’s a form of tinnuitis. I have it in my left ear. It’s not daily. It comes and goes, but it can be rather painful when it does happen).

Mine is not painful.

Have you had issues with smelling?

No.

Fatigue?

No.

Any hormonal changes, like low thyroid?

No.

Issues with making impulsive decisions?

No.

Issues with writing (typing or handwritten) such as cramping in hands, tremors, etc?

I cannot write legibly anymore although only one check has been returned. A bill comes; I immediately make out a check—old school.

Any issues with swallowing?

No. more so with chewing.

Any issues with understanding what someone is saying to you?

No.

Paranoia?

No.

Depression?

I am a recovering alhocolic.

Sleep Apnea?

No.

Numbness and tingling?

In my left hand—I swear it is because of the hospital restraints.

Balance or coordination issues?

No.

Have you noticed any new symptoms developing or anything that got better but is now getting worse?

No.

It sounds like overall, except for a few minor speech issues and movement issues, you have completely recovered. Do you feel that is a correct summary? Oh, and in regards to directions, I wanted to clarify the question….do you have issues if someone tells you something verbally, like a new procedure at work, would you have difficulty remembering the task or understanding the directions? Oh, and how long overall do you feel it took for you to make the recovery to this point? Was it a matter of weeks, months? Oh, and what area of the brain was impacted? Was it the pontine area or the basal ganglia area? And how long has it been since the injury again?
I have the drooling and grunting issues along with my bum left thumb, also.  I am graciously, graciously, graciously……..thankful for my recovery, but I would not use the term “completely”.  I have no issues following directions.  I think it was the pontine, honey, is that right?  My life partner has to do the timeline?  I have no clue–we did 2 days of Tour de Kota on 2010 and in 2012 we did all six.  I was diagnosed with CPM in December 2007/January 2008?

Thank you, Todd!!! I hope that I can get more information regarding real life experiences with CPM/EPM. I think it might be an important reference for doctors who want to know what a person lives with after they leave the hospital. With Todd’s help, I’ll keep you posted of any changes and improvements that he experiences, but regarding this injury, he has had the best recovery, and he didn’t have any treatments except cognitive and speech therapy.

Please feel free to contact me with any questions or comments, and I will get them to Todd or try to find an answer for you.

 

Update:  Some information provided about how life has changed for Todd since his injury according to his significant other:

Well, to elaborate just a little more, the event happened right  before Christmas of 2007 and the way it was explained to me was that the demyelination of the myelin sheath doesn’t allow the nerve signals to properly transmit, therefore causing the symptoms of speech he has described.  Believe that would be the basal ganglia.   I would say those issues are considerably more difficult to deal with than “minor”.  Sometimes speaking is quite labored and will often cause him to speak very little because of the strain.  You can visually see the strain on his neck muscles when speaking.  The grunting is mostly in the am upon waking before his body becomes accustomed to regular movement.  That is why vigorous exercise demonstrably improves the situation and remains a vital component to his continued recovery and/or keeping him where he is at in the recovery process.
 
I believe that the recovery has been slow and steady ever since the event occurred. 
Thank You for input, Linda. I think that is really good to know. I think an outside, yet personal, description of the experience is very helpful.
Related articles
Posted in Your Hyponatremia/CPM story: and tagged , , ,
02 Nov 2012

What’s the difference (types of brain injury and their symptoms):

There seems to be a belief that “how” you get an injury makes a difference as to what symptoms you may or may not experience.

If you have a bacterial infection that destroys your heart tissue and that leads to a heart attack, is that different than having clogged arteries that lead to a heart attack?  Of course, there are some differences, the how you had a heart attack, but once the damage is done, the outcome is the same; your heart has been damaged. You will have to live with the damage and its impact to your heart and body.

There is a belief among doctors that brain injuries are universally different depending on how your brain was injured. There is a belief that if you were hit in the head or suffered a concussion, the injury to the brain will not produce the same symptoms as when you have a stroke or an injury due to a chemical imbalance.

I’ve discussed previously that the injury to the brain itself might be a static injury. For instance, once you’ve been in a car accident, your brain will not continue to receive  injury from the car accident itself, but there is  new research that shows that symptoms continue to persist and develop due to the body’s autoimmune response.

There are several ways that a person can get a brain injury.  According to Ohio State University Medical Center, the following is a list of brain injuries and how they differ:

  • Concussion
    A concussion is an injury to the head area that may cause instant loss of awareness or alertness for a few minutes up to a few hours after the traumatic event.
  • Skull fracture
    A skull fracture is a break in the skull bone. There are four major types of skull fractures, including the following:

    Illustration of different types of skull fractures
    Click Image to Enlarge
    • Linear skull fractures
      This is the most common type of skull fracture. In a linear fracture, there is a break in the bone, but it does not move the bone. These patients may be observed in the hospital for a brief amount of time, and can usually resume normal activities in a few days. Usually, no interventions are necessary.
    • Depressed skull fractures
      This type of fracture may be seen with or without a cut in the scalp. In this fracture, part of the skull is actually sunken in from the trauma. This type of skull fracture may require surgical intervention, depending on the severity, to help correct the deformity.
    • Diastatic skull fractures
      These are fractures that occur along the suture lines in the skull. The sutures are the areas between the bones in the head that fuse when we are children. In this type of fracture, the normal suture lines are widened. These fractures are more often seen in newborns and older infants.
    • Basilar skull fracture
      This is the most serious type of skull fracture, and involves a break in the bone at the base of the skull. Patients with this type of fracture frequently have bruises around their eyes and a bruise behind their ear. They may also have clear fluid draining from their nose or ears due to a tear in part of the covering of the brain. These patients usually require close observation in the hospital.
    • Intracranial hematoma (ICH)
      There are several types of ICH, or blood clots, in or around the brain. The different types are classified by their location in the brain. These can range from mild head injuriesto quite serious and potentially life-threatening injuries. The different types of ICH include the following:

      Illustration of Intracranial Hematoma
      Click Image to Enlarge
      • Epidural hematoma
        Epidural hematomas occur when a blood clot forms underneath the skull, but on top of the dura, the tough covering that surrounds the brain. They usually come from a tear in an artery that runs just under the skull called the middle meningeal artery. Epidural hematomas are usually associated with a skull fracture.
      • Subdural hematoma
        Subdural hematomas occur when a blood clot forms underneath the skull and underneath the dura, but outside of the brain. These can form from a tear in the veins that go from the brain to the dura, or from a cut on the brain itself. They are sometimes, but not always, associated with a skull fracture.
      • Contusion or intracerebral hematoma
        A contusion is a bruise to the brain itself. A contusion causes bleeding and swelling inside of the brain around the area where the head was struck. Contusions may occur with skull fractures or other blood clots such as a subdural or epidural hematoma. When bleeding occurs inside the brain itself (also called “intraparenchymal hemmorage”), this can sometimes occur spontaneously. When trauma is not the cause, the most common causes are long-standing high blood pressure in older adults, bleeding disorders in either children or adults, or the use of medications that cause blood thinning or certain drugs of abuse.
      • Diffuse axonal injury (DAI)
        These injuries are fairly common and are usually caused by shaking of the brain back and forth, which can happen in car accidents, from falls or shaken baby syndrome. Diffuse injuries can be mild, such as with a concussion, or may be very severe, as in diffuse axonal injury (DAI). In DAI, the patient is usually in a coma for a prolonged period of time, with injury to many different parts of the brain. (http://medicalcenter.osu.edu/patientcare/healthcare_services/nervous_system/injury/Pages/index.aspx)

Notice in the above list, it does not mention brain injuries caused by stroke. It does not mention injuries caused by infection, like meningitis. It does not mention injury caused from Central Pontine Myelinolysis. It does not mention injury caused by disease, like Multiple Sclerosis.

If you read about any of the above diseases, injuries or disorders, you will find that those who experience injuries to the brain by any means, has similar symptoms.

Those who have MS experience movement issues:

    • Blurred or double vision
    • Red-green color distortion
    • Pain and loss of vision due to optic neuritis, an inflammation of the optic nerve
    • Difficulty walking
    • Paresthesia – abnormal sensation, or pain, such as numbness, prickling, or “pins and needles.”
  • Other symptoms of multiple sclerosis:
    Throughout the course of the illness, an individual may experience any/all of the following symptoms, to a varying degree:

    • Muscle weakness in the extremities
    • Difficulty with coordination (impaired walking or standing may result; partial or complete paralysis is possible)
    • Spasticity – the involuntary increased tone of muscles leading to stiffness and spasms.
    • Fatigue (this may be triggered by physical activity, but may subside with rest; constant, persistent fatigue is possible)
    • Loss of sensation
    • Speech impediments
    • Tremor
    • Dizziness
    • Hearing loss
    • Bowel and bladder disturbances
    • Depression
    • Changes in sexual function

The above list comes from, http://medicalcenter.osu.edu/patientcare/healthcare_services/nervous_system/ms/Pages/index.aspx

Stroke symptoms:

  • movement and sensation
  • speech and language
  • eating and swallowing
  • vision
  • cognitive (thinking, reasoning, judgment and memory) ability
  • perception and orientation to surroundings
  • self-care ability
  • bowel and bladder control
  • emotional control
  • sexual ability

In addition to these general effects, some specific impairments may occur when a particular area of the cerebrum is damaged.

Effects of a right hemisphere stroke:

The effects of a right hemisphere stroke may include the following:

  • left-sided weakness (left hemiparesis) or paralysis (left hemiplegia) and sensory impairment
  • denial of paralysis or impairment and reduced insight into the problems created by the stroke (this concept is called “left neglect”)
  • visual problems, including an inability to see the left visual field of each eye (homonymous hemianopsia)
  • spatial problems with depth perception or directions such as up/down and front/back
  • inability to localize or recognize body parts
  • inability to understand maps and find objects such as clothing or toiletry items
  • memory problems
  • behavioral changes such as lack of concern about situations, impulsivity, inappropriateness, and depression

Effects of a left hemisphere stroke:

The effects of a left hemisphere stroke may include the following:

  • right-sided weakness (right hemiparesis) or paralysis (right hemiplegia) and sensory impairment
  • problems with speech and understanding language (aphasia)
  • visual problems, including the inability to see the right visual field of each eye (homonymous hemianopsia)
  • impaired ability to do math or to organize, reason, and analyze items
  • behavioral changes such as depression, cautiousness, and hesitancy
  • impaired ability to read, write, and learn new information
  • memory problems

What effects can be seen with a stroke in the cerebellum?

The cerebellum is located beneath and behind the cerebrum towards the back of the skull. It receives sensory information from the body via the spinal cord and helps to coordinate muscle action and control, fine movement, coordination, and balance.

Although strokes are less common in the cerebellum area, the effects can be severe. Four common effects of strokes in the cerebellum include the following:

  • inability to walk and problems with coordination and balance (ataxia)
  • dizziness
  • headache
  • nausea
  • vomiting

What effects can be seen with a stroke in the brain stem?

The brain stem is located at the very base of the brain right above the spinal cord. Many of the body’s vital “life-support” functions such as heartbeat, blood pressure, and breathing are controlled by the brain stem. It also helps to control the main nerves involved with eye movement, hearing, speech, chewing, and swallowing. Some common effects of a stroke in the brain stem include problems with the following:

  • breathing and heart functions
  • body temperature control
  • balance and coordination
  • weakness or paralysis in all four limbs
  • chewing, swallowing, and speaking
  • vision
  • coma

The above information is taken from, http://medicalcenter.osu.edu/patientcare/healthcare_services/stroke/effects/Pages/index.aspx

The next list, is the list that I have found to be defining to those who have brain injuries in general. Notice how similar they are to what we find in things like stroke and MS:

Issues that are attributed to brain damage:

Hearing Issues (problems with understanding spoken word, tinnitus, dizziness, buzzing)
Visual Issues (blurry vision, color issues, blindness)
Heart Issues (problems with maintaining proper blood pressure and heart rates)
Cognitive Issues (memory deficits, learning issues, reading problems, writing problems, word recognition)
Hormone Issues (lack of Growth Hormone, sex hormones, hypothyroidism, and hypopituitarism)
Sexual Issues (lack of desire)
Reproductive Issues (lack of menses in women, lack of gonadotropin hormones)
Psychological Issues (depression, irritability, nervousness, anger, crying, anxiety)
Parkinson’s Disease
Alzheimer’s or Alzheimer’s like disease
Epilepsy (early to late onset of seizures, can occur up to 40 years after injury)
Sleep Disturbances (insomnia, inability to stay asleep, central nervous system sleep apnea)
Early Mortality (high risk of death during first 1 to 10 years after injury, after that life expectancy is 5-7 years less than average non injured person)
Incontinence (urinary or bowel)
Muscle Dysfunction (twitches, spams, jerks)
Mental Fatigue (difficulties working or going to school full time due to concentration deficits)
Speech disturbances (stutters, stammering, not being able to complete thoughts, not using proper words)
Issues with communicating
Movement disorders (problems with coordination, walking, standing, eating, tremors, shaking, swallowing, speaking)
Temperature control issues (too hot or too cold)
Complete paralysis (those with CPM/EPM are known to develop locked in syndrome)
Breathing issues (the brain forgets to tell the body to breathe, especially critical in sleep)
As you can see, people have very similar, if not identical symptoms, no matter how they received the brain damage. I am hopeful that over time doctors will come to realize that whether or not you were hit in the head or had a stroke the process and recupperation needs to be treated the same if not structured from the same basic model and tweaked to meet an individuals need.
Further, it needs to be understood that no matter HOW you got your injury, the immune system responds to the injury in the same manner leading to further complications as a person ages.
Now, I wanted to add some descriptions to the symptoms that you may experience with brain injuries. Iwas excited to find the following description of mental fatigue. I have experienced this as I returned back to work. I have had ongoing issues with this outside of work as well. I simply can not do as much as I did before. The mere act of trying to stay focused for long periods of time leaves me mentally and physically exhausted. My doctors first reaction when I explained this is that it must be a psychological phenomena related to knowing I have a brain injury. When a doctor gives these suggestions, you have to believe they must be right. It must be all in my head (ha-no pun intended). I was happy to find a research article discribing this issue as a part of having a brain injury.

Patients will recover within days to weeks, but a significant minority develop persistent mental fatigue, and it will take a long time before they can accept the situation and find
ways to lead their “new life”. Until then, life can be very mentally tiring and for many it can be a great strain. In the case of a slow recover, things might turn out not to work as smooth and easily as they used to. It is possible for patients to take walks in the forest, but reading, talking on the telephone or attending a meeting could be mentally very tiring and may require a prolonged rest afterwards. It is no longer a pleasure to go to parties, as they can’t take part in conversations, and they soon become extremely tired and want to go home. It might also be shameful for the person to admit that the brain does not work properly. They also tend to experience difficulties concentrating, and it could be difficult to filter what they hear and see. Every unimportant detail is registered. Sensitivity to stress is also very common, even in minor situations which they are normally able to handle.

http://cdn.intechopen.com/pdfs/30498/InTech-Mental_fatigue_a_common_long_term_consequence_after_a_brain_injury.pdf

I will try to include the additional research that I have found regarding brain injuries and what you can expect, no matter what type of injury you have.

Please keep in mind, no matter what type of injury you have, it does not mean that you will have all of these symptoms. It does not even mean that you will have life long consequences because of it. The severity of the injury, the location of the injury, and the initial treatment that you receive following the injury all determine the outcome that you will have following your injury. I believe fully that you can go on to lead a productive life depending on many factors that I will address later in the future.

 

UPDATE 11/14/12—I found this research article, which explains a significant number of the physical issues after a brain injury. It provides more of the physiological description of why the injury will cause the symptoms, like epilepsy, visual and auditory disturbances, cognitive dysfunctions.I was extremely happy that this article states that a person’s IQ remains relatively intact after these types of brain injuries (this is what I have experienced), but they continue to have issues with memory, learning, and retrieval.

http://jnnp.bmj.com/content/73/suppl_1/i8.full

Cognitive and neuropsychiatric sequelae

After resolution of PTA, overall IQ and posterior cognitive functions of language and visuospatial skills are often relatively intact and the residual neuropsychological deficits may not be easily detected by simple tests of cognitive function. A formal neuropsychological assessment of the patient’s memory, attention, and executive skills and their mental speed is thus mandatory, particularly late after severe injury when these problems play a major role in limiting independence.

Organic disorders of behaviour9 are often seen in tandem with cognitive dysfunction, and are usually described by a carer. Personality changes, of imprecise localising value, include egocentricity, childishness, irritability, aggressiveness, poor judgement, tactlessness, stubbornness, lethargy, disinterest, reduced drive and initiative, and often reduced rather than increased sexual interest. Occasionally more dramatic positive and impulsive, or negative and abulic, behaviours prevail.

Psychiatric sequelae including low mood, depression, and anxiety disorders are common after TBI, and often delayed in onset. Psychiatric illness, fewer years of formal education pre-injury, and a more dependent outcome predispose to the development of these problems.10 Depression may respond to a selective serotonin reuptake inhibitor or venlafaxine, and psychiatric referral may be necessary. Occasionally obsessive–compulsive disorders and psychoses occur in the absence of obvious premorbid psychiatric history, and the risk of suicide is increased.

Related articles
Posted in Central Pontine Myelinolysis/ Extrapontine Myelinolysis and tagged , , , , , , ,
22 Feb 2012

Dystonia (cramping):

I’m struggling with what to approach or how to approach it.

I’ve covered in some detail how CPM/EPM is caused and what parts of the brain are effected. I could discuss in more detail what areas of the brain are known to be associated with certain symptoms. However, there is a lot of mystery still surrounding how damage to the brain will cause a specific symptom.

I could discuss in more detail how the damage occurs (pathogenesis).

I could discuss who are some doctors to reach out to (right now this list is rather short). I could discuss prognosis or go into more detail on symptoms.

There’s also the social support. For instance, if you are like me, you might not have returned to work full time or may be facing ongoing disability.

How do you get started with SSI or social security disability?

There’s the legal ramifications.

One of the problems I’ve had with this injury is making decisions, so my attention becomes fragmented.

I guess there’s no wrong way to scramble an egg, so I’ll just choose something.

Dystonia.

I don’t think I’ve gone into great detail regarding this issue, and if you’re reading this you’re in for a treat. 🙂

Dystonia is painful involuntary muscle contractions caused by a neurological (brain/spinal cord) issues.

There’s two types of classifications for dystonia: focal and generalized.

Focal dystonia generally effects a smaller, single area. For instance, you may have focal dystonia of your hand. Most of the time it is in one hand at a time. So, it’s not like both of your hands will cramp at the exact same time. It generally effects smaller muscles, like those of your face or neck.

Now, something, I did not know is that something like writer’s cramp is considered a focal dystonia.

(That said, guess what I’ve developed since having EPM. I’m getting it in my hands and feet.I know, really another symptom, but yes. It hurts when I type or write, especially for extended periods. Of course, I used to have this before I had EPM too (who hasn’t experienced writer’s cramp at some point in their life), but I never had it daily like since I’ve had EPM.)

I think the following video shows how minor these focal dystonic neurological issues might seem. In a lot of videos that you see online, dystonia seems to be extreme cramping, but that’s only in severe cases. It is in most cases, especially early on without treatment not as noticeable except for to those who are living with it. Please don’t take that to mean that this issue is not painful or abnormal.

http://www.youtube.com/watch?v=T7OpC9-Gd9g

Like everything, stress and fatigue tend to make these movement based issues worse.

I think what’s unusual with dystonia that’s caused by EPM, it tends to effect more than one area, not at a single time, but you can experience radiating cramping through out your body. So from the first week that I developed this, I would experience a pain in my hand, 30 seconds later I would have it in my foot, 30 seconds later it would be in my thumb, then my back. It was just constant circulating pain. It’s now become the cramping and stiffness as described in the video above.

In most neurological cases of dystonia, you will have a primary problem and over time you will develop the cramping in other parts of your body.

I believe dystonia also causes the swallowing issues that are associated with EPM/CPM.

Possible causes for Dystonia:

Sometimes dystonia is but one symptom of a more pervasive disorder that affects the basal ganglia, such as:

  • Parkinson’s disease
  • Huntington’s disease
  • Traumatic brain injury (ie, CPM/EPM)
  • Stroke
  • Brain tumor
  • Oxygen deprivation
  • Infections, such as tuberculosis or encephalitis
  • Reactions to certain drugs
  • Heavy metal or carbon monoxide poisoning

The above information comes from: http://www.mayoclinic.com/health/dystonia/DS00684/DSECTION=causes

Now, generalized dystonia impacts Larger muscle groups in the body, such as those of your back and abdominal wall.

Check out this video for a woman who is living with generalized dystonia:

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

Again, please note, that not all cases of dystonia are that extreme, and they may not be permanent distortions but like with seizures, you can have cycles to it. It does become worse with activity and movement of an afflicted part of the body.

I do recommend the Mayoclinic website that I cited above to get additional information on dystonia.

I hope this gives you an understanding as to something you might experience with CPM/EPM. Hopefully, it brings you peace. If you are experiencing what I’m experiencing with the medical profession, you might feel a little less crazy by reading this. 😉

God Bless!

 

Posted in Central Pontine Myelinolysis/ Extrapontine Myelinolysis and tagged , , , , ,
19 Feb 2012
1 Comment

Tremors:

As I mentioned on my previous “personal” post, there’s a lot of information on tremors, and as I recently found out, it’s important to know the distinctions when you are dealing with CPM/EPM.

The real question is: what are some of the characteristics of a tremor associated with CPM/EPM?

This really isn’t an easy question to answer because it seems that movement issues associated with CPM/EPM vary. Not everyone with CPM/EPM will have an associated tremor, just like not everyone will develop locked in syndrome.

Further, there seems to be the initial injury that occurs with CPM/EPM, but as the brain creates new neuro pathways after the damage, then there can be new movement disorders that develop.

For whatever reason, this late onset of symptoms seems to be more likely to develop in a person who has damage in the basal ganglia. When a demyelination occurs outside of the pontine area of the brain, it is known as EPM. So, there seems to be a connection with areas damaged outside the pons and movement disorders.

In three survivors of central pontine myelinolysis, dystonia (in two patients) and rest tremor (in one) were sequelae. The onset of these movements occurred 3 weeks to 5 months after the initial presentation with central pontine myelinolysis. Magnetic resonance imaging revealed basal ganglia lesions suggestive of extrapontine myelinolysis in all three patients. We propose that the movement disorders seen in our cases are clinical correlates of extrapontine myelinolysis.

http://onlinelibrary.wiley.com/doi/10.1002/mds.870070208/abstract

We report on a woman with delayed-onset of belly dancer’s syndrome 5 months after central pontine and extrapontine myelinolysis (CPM/EPM) and severe hyponatriemia. This case demonstrates that basal ganglia lesions in EPM can be the underlying pathoanatomic substrate for the rarely observed belly dancer’s syndrome. The sequential appearance of extrapyramidal symptoms might reflect an ongoing but ineffective or deficient remyelination process. The presence of CPM/EPM should be considered in patients with involuntary dyskinesias of the abdominal wall.

http://onlinelibrary.wiley.com/doi/10.1002/mds.21394/abstract

In order to understand tremors to the fullest it is important to understand why people have tremors and the different types of tremors.

For instance, Parkinson’s Disease can cause a resting tremor. It usually impacts one side of the body early on in the disease and then as the disease progresses the movement issues become apparent in both sides. This type of movement issue can actually start in just one finger and for only brief periods.

There are also people with Parkinson’s who first notice the tremor in their hands when they are holding something, like a paper to read, as time progresses these tremors can become significant at rest as well as with activity.

As the following doctor states, it is really difficult to diagnose tremors because they can vary. I found the following video really detailed on how to diagnose a tremor, and I believe that University Hospital that made this video has the right approach in trying to diagnose it. I wish this is how my appointment with the neurologist went. I tried to explain that doctor that the severity of my symptoms vary, and he seemed completely dismissive. Anyway, check out this video:

http://www.youtube.com/watch?v=pP8jaxommQY

I have not been able to find a video that shows a Parkinson’s like tremor early in the disease.

The following video shows the various types of tremors. However, the video is very short.

The next video that I am posting also describes a postural tremor typically found in multiple sclerosis. It also describes cerebral tremors.

Now, I want to pause to explain that parkinson’s is a disease that describes how a brain cell has difficulty uptaking dopamine in the brain. In regards to MS, there is damage to the myelin sheeth because of an autoimmune reaction. There are other reasons for tremor as well, such as cerebral tremor. This type of tremor occurs at the end of an intentional movement. You try to touch your nose or press a button, but you can’t because your hand shakes. This tremor is caused by an injury to your cerebrum. There is a dystonic tremor. This tremor is caused when your muscles contract severely and cause your arms or legs to shake.

In regards to CPM/EPM, they are not certain why some people have tremors. There have been studies that show some people have issues with their cells uptaking dopamine like in parkinsons; however other studies showed patients with tremors had normal dopamine uptake. In these cases, the researchers speculated that the tremors were caused by new neuro pathways that develop.

I hope that one day, we will have more research that is done for CPM/EPM. In the mean time, it’s important to rule out all causes for your neurological symptoms, and in order to receive the correct treatment it is important to meet with qualified neurologists.

Please feel free to contact me with any questions or any information regarding your neurological issues. It is important to get input from you so that we can know and understand more about this injury.

UPDATED 04/14/2012–I’m including the following link that describes that there are people who experience resting bilateral tremors of both hands, that aren’t a Parkinson’s tremor. http://www.ghpjournal.com/article/S0163-8343(99)00018-3/abstract

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