Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Archive for the category “What is Hyponatremia?”

What’s New?

Wow! It has been a long time, too long.  I am sorry. One of the things that you soon realize, you lose time with a brain injury. If you have a brain injury, you know what I mean. If you live with someone who has a brain injury, you know what I mean. If neither applies, let me just say, a person with a brain injury lives in the moment of the day every day.

In most cases, you won’t remember much about yesterday. Most definitely, you have forgotten about most of what happened last week, a month ago, two years ago. It literally seems like I wrote my last post just a few days ago. I know it has been longer, but I don’t know how long ago, and I am actually afraid to see how long it has been. There are blessings in living in the moment. The hurtful things your husband said, has faded from your memory. The good, the bad, the ugly, have all faded from my mind.

So what is new with me?

Isn’t that a trick question? I don’t know.

I continue to search for answers and help through modern medicine. It really has been a futile search. In most cases, I get blank looks or shrugged shoulders.

I continue to struggle with work. It’s a job that I knew and could perform in my sleep prior to the brain injury, and it is something I struggle with part time now. It’s mentally and physically exhausting. Most people looking from the outside in, would not understand how that is. I look normal. I act, for the most part, normal, but it isn’t until you get to know me that you start to see it. How I drop things continuously. How I lose control of my hands, arms, and if I get really anxious, my legs and head. Most wouldn’t pick up on the stammering, repetition, loss of words. You might realize the memory issues first, losing a credit card, not being able to find my keys or phone, forgetting a lunch date or appointment.

It’s life post brain injury.

And yet. those aren’t new things. Those are still old things. The new things would be the loss of friendships, relationships, the destruction of a marriage. The new things would be finding yourself among a group of new people. People who choose to be a part of your new, less than perfect life. There are friendships found among other survivors. There are strong bonds among the doctors who push forward with arched eyebrows, but a fervor not to give up. These friendships mean more because these people accept you with all of your imperfections and stand by your side. They aren’t afraid to hold your hand, be the shoulder you lean on, or the support you crave.

They are worth  their weight in gold.

Please feel free to reach out to me, as with everything, life is better lived with friends.

 

 

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Hyponatremia Recent Stats:

I have meant to do this for awhile, and I apologize for it taking so long. I guess, better late than never.

The HCUP website reformulated the way that they record statistics. Now, I did not read why or how, but it did show that the previous stats that they recorded before July of 2014 were across the board higher, than what they are listing now. For 2011, I will include all the data points that I found, ie old and newer stats.

Hyponatremia diagnosis codes: ICD-9: 276.1

ICD-10: E87.1

To obtain the date, I used the ICD-9 code: 276.1

For 2011, hyponatremia was recorded as this:

2011 National statistics – principal diagnosis only (hyponatremia only -from all hospitals in US)

Outcomes by 276.1 Hyposmolality
276.1 Hyposmolality Standard errors
Total number of discharges 100,215 2,333
In-hospital deaths 1,085 (1.08%) 73 (0.07%)

Therefore, there were a total number of patients that had hyponatremia specifically, 101,300 +/- 2406

If you look at all possible combination of hospitalized patients that had hyponatremia AND an additional condition (ie severe burns, cancer, liver transplant, etc):

2011 National statistics – all-listed
You have chosen all-listed diagnoses. The only possible measure for all-listed diagnoses is the number of discharges who received the diagnoses you selected. If you want to see statistics on length of stay or charges, go back and select “principal diagnosis.”

276.1 Hyposmolality
276.1 Hyposmolality Standard errors
Total number of discharges 1,940,211 51,938

Now, these are the NEW reference points, the older version listed for 2011 hyponatremia only diagnosis: 104,744 (discharged), 1,124 people died.

If you include all possible diagnoses with hyponatremia, it is 2, 019, 550 +/- 53,454.

Yeah, that’s a lot of people who are at risk for CPM/EPM if hyponatremia is not diagnosed and managed correctly.

For 2012:

2012 National statistics – principal diagnosis only

Outcomes by 276.1 Hyposmolality
276.1 Hyposmolality Standard errors
Total number of discharges 101,330 1,139
In-hospital deaths 1,160 (1.14%) 75 (0.07%)

There is no older version of documenting with this system.

However, if you look at all hospitalizations that included hyposmolality:

2012 National statistics – all-listed
You have chosen all-listed diagnoses. The only possible measure for all-listed diagnoses is the number of discharges who received the diagnoses you selected. If you want to see statistics on length of stay or charges, go back and select “principal diagnosis.”

276.1 Hyposmolality
276.1 Hyposmolality Standard errors
Total number of discharges 1,934,996 22,563

I love numbers because they don’t lie. What I don’t like with this 2nd break down (all hospitalization that listed 276.1 with another condition), it is impossible to tell if hyponatremia actually killed the person or the other illness.

Regardless, there an extremely HIGH number of people who are diagnosed with hyponatremia each year, even if it is or isn’t with a secondary diagnosis. More people should be aware of the condition, and how it should be treated! Hopefully, you will spread the word on how common it is to get it, and how it should be treated.

Blessings!

(Use the link below to find the statistics above: http://hcupnet.ahrq.gov/HCUPnet.jsp)

Hyponatremia: What you should really know to prevent CPM and EPM.

Today has been a rough day for me. I knew that my hyponatremia was treated incorrectly when I developed Extra Pontine Myelinolysis. However, I didn’t realize to what extent my treatment of hyponatremia was mismanaged.

It is absolutely a fundamental point of this blog to try to prevent ANYONE from having to live with this injury. There is no reason anyone should.

So, in this post, I am going to try to simplify the steps of how hyponatremia should be treated.

First, it is important for you to recognize the symptoms. *Please see my earlier posts for those*

Once you realize there is a problem, seek treatment. It is an emergency.

A basic metabolic panel should be ordered to determine if your sodium levels are low.

Next, it is important for the doctor to figure out WHY you have hyponatremia, and how LONG you have had it.

If they can’t figure out the time line, then it is better for them to assume that it is chronic because it is more likely that you will develop CPM if they treat chronic hyponatremia too quickly versus acute. (Acute is when sodium has been too low for less than 48 hours. Chronic is when sodium levels have been low for more than 48 hours).

Acute hyponatremia can cause severe symptoms such as seizures, respiratory distress and coma. The severity of symptoms determines how quickly the levels should be raised. However, it is generally accepted that once your symptoms begin to improve, the treatment should be decreased or halted.

According to Dr. Sterns, an expert on hyponatremia, acute hyponatremia should be treated in the following manner, “should be treated immediately with a bolus infusion of 100 mL of 3% NaCl to acutely reduce brain edema, with up to 2 additional 100-mL 3% NaCl bolus infusions that should be given at 10-minute intervals if there is no clinical improvement.10 We believe that this is a reasonable regimen for all symptomatic patients with acute hyponatremia…” (use the link below to find the information).

According to Dr. Sterns, chronic hyponatremia should be treated with “…we suggest a goal of 6 to 8 mmol/L in 24 hours, 12 to 14 mmol/L in 48 hours, and 14 to 16 mmol/L in 72 hours.” (http://www.uphs.upenn.edu/renal/important%20pdf%20III/Sterns%20-%20The%20Treatment%20of%20Hyponatremia.pdf)

The cause of your hyponatremia is extremely important because it absolutely determines what treatment you should receive.

For instance, if a drug has caused your hyponatremia, like a diuretic, then the first course of treatment is to stop taking the diuretic. Sometimes, just discontinuing the medication is enough to reverse the low sodium.

I HIGHLY recommend the following article posted by the Cleveland Clinic that outlines in exact detail which types of treatments based on the cause of the hyponatremia.

There is little question that if you are on a 3% saline solution for treatment, that your sodium levels should be monitored every 1 to 2 HOURS. As soon as your levels start to increase to the point that your symptoms start to resolve, even BEFORE it reaches the 6 to 8 m/mol GOAL, the 3% saline should be halted. This will stop your levels from reaching the “danger zone” which is approximately 8 to 12 m/mol in the first 24 hours with chronic hyponatremia. It is generally accepted that with acute hyponatremia that you can raise the levels a bit faster and not risk CPM or EPM.

ONE OF THE MOST IMPORTANT FACTORS TO REALIZE: IF YOUR LEVELS HAVE BEEN INCREASED TOO QUICKLY, THEN THEY CAN BE DECREASED BACK TO A HYPONATREMIC STATE TO PREVENT CENTRAL PONTINE MYELINOLYSIS. IT IS BELIEVE THAT THIS DROP CAN OCCUR DURING A 5 DAY PERIOD AFTER THE RAPID CORRECTION OCCURRED.

For further information and more detailed description of these steps as well as how to treat certain types of hyponatremia, please access this article: http://www.ccjm.org/content/77/10/715.full

These simple steps could save your life!

Figuring it out:

I feel like I have been failing at keeping up with the blog. There have been many changes happening over the past few months that have made it difficult for me to work on this.

One of the greatest challenges has been in job. There has been a mandatory transfer to a new department that has left me mentally drained.

It’s harder than my previous position. It deals with problem solving, and you have to be able to think through situations that can be unique, and I have lost that.

Prior to the injury, I was able to multi task without issue, and I was able to process information and come up with solutions. Now, it can take several other people’s assistance for me to stay focused and on topic.

For instance, I am trying to write this post, and my significant other feels it necessary to play the Inaugural speech. I explained that I didn’t want to listen to it (I’m working on this), so I he moved his laptop into the kitchen so he could listen to it while he cooks. Our place isn’t that big, and so even though it’s not as loud, I can still hear it as if I was playing it myself.

So, my attention drifts, and I’m becoming more irritated as I know that he knows that I have a hard time staying focused in the best of situations.

Frankly, it’s stressful, and I know that if you are dealing with a brain injury or CPM/EPM, that you know exactly to what I am referring.
It’s not an intentional deficit, but it’s a frustrating one.

There are days that I just want to put in ear plugs and bury myself in an underground bunker, so that I can get away from the external crap that bombards me. The dog barking, the neighbors walking, the smell that I can’t figure out where it is coming from, a light, a noise, a sigh, a cramp, a door shutting, my son playing video games, all of these stimuli crash down on me constantly!!! It pulls at my focus. I simply can’t shut the freaking things out all the time, especially if I’m tired or stressed.

It’s absolutely exhausting. It takes so much time for me to pull myself back to what I was doing, and that’s what makes doing my job so hard.
There are days when everything seems normal, like I seem normal, but then there are days when it feels like I’m going to explode or implode from stimulation overload.

(Like just now, I remembered I wanted to contact someone new that I know has a brain injury. I want to get back to several friends that are currently suffering from CPM to find out how they are doing, but by the end of this post, I will probably not remember again. You never know.)

This is where my cognitive and occupational therapist come into play. I am extremely blessed to have two of the best therapists in the world. When I work with them, it is exhausting and stressful, but they can direct me and ground me back to what I need to do.

Ironically, they currently believe that the best thing for me to do is nothing. They have suggested on numerous occasions in the past nine months that I stop working. However, if you are like me, that is probably not possible.

I am writing this post to pass along some of the insights that they have given me.
Initially, they felt that if I came to a point where I was getting stuck, that I should keep pushing forward.

If I couldn’t figure out a word, then I should keep pushing myself to try to figure out the word that I wanted to use. If I couldn’t remember exactly what I wanted to say (lost my train of thought), then I should keep working through the words and trying to explain what it was that I wanted to say.

They felt that this would help develop new neural paths, retrain my brain.

They recently discovered through conferences that this just creates additional stress on the person, and it might have a more negative impact on recovery.

It just goes to show you, nothing is set in stone. There may not be an universal answer. I think you have to use a combination that’s best for you.

They have also come to the conclusion (and this has been one that they have been saying for a while), less is more.

You have to try to eliminate stress. You have to downsize your responsibilities. I guess it goes back to the idea that you have to learn to crawl before you learn to walk.

So, if you have a hard time keeping up with your daily responsibilities, you should try to transfer those responsibilities to the person(s) in charge of your care.

For instance, today, I’ve had a very full plate. For me, post injury, I consider this a full plate, but if you’re a caregiver you might be like, that’s nothing. Keep in mind, after having a brain injury, it is difficult to get much of anything done.

My to do list for Today:

1.) Take my medications

2.)  Have breakfast

3.)  Go to the gym

4.)    Pick up prescriptions

5.)    Make fajita marinade and season chicken

6.)    Go to the grocery store and buy additional chicken

7.)    Write a letter my supervisor

8.)    Write a letter to our human resource department

9.)    Call the mortgage company (not sure if mailed payment)

10.)   Mail Thank You card

11.)    Mail invitations

12.)    Clean out car

13.)    Write to Cedar Fair

14.)    Check for Shoes

15.)    Pay bills

16.)    Write blog post

17.)    Check on status of portrait (order placed in November)

What I actually did:

1.) Made fajita marinade

2.) Went to the grocery store and bought chicken

3.) Wrote a letter to my supervisor

4.) Wrote a letter to my human resource department

5.) Wrote a letter to my lawyer

6.) Worked on my blog post

7.)  Called the mortgage company

This was a full day for me. I’m exhausted now. I’m ready for a break, and that was the point of my therapists. Prior to this, I would feel guilty for not getting everything done or I would chastise myself.

You can’t do that. You do have to simplify. You also have to prioritize. Were the things that I did today necessary? For the most part, yes.

You need to put you first, and make rational decisions on what is WORTH your physical and mental energy, and you have to be accepting of your decisions with the knowledge that they are, for the most part, not set in stone.

The Building blocks to rebuilding you:

 

1.) Let go of what stresses you.

2.) Simplify your responsibilities where you can.

3.) Accept that you have new limits.

4.) Be happy with your decisions.

5.) Understand that you, for the most part, can change your mind.

6.) Prioritize your responsibilities based on what is worth your physical and mental energy.

I hope this foundation helps you in moving forward in your brain injury recovery.

Michael’s story (symptoms):

I am happy to say that Michael has answered some or all of the same questions that Todd has. I think this will give you a good idea as to how each case of CPM/EPM is unique, but also has similarities, especially with movement, speech, cognitive issues, etc. There is a lot more research that needs to be done, and this is by no means a detailed explanation of everything that they experience, but it gives a general idea of what a person lives with.

I hope you’re ready for a great Christmas break. I hope you have a safe trip to Canada.

I’m hoping you can help me by answering the following questions. I’m trying to organize a list of symptoms that people have with this or how their injury has progressed over time. Feel free to add comments and additional comments about how the injury has impacted you. Take your time. I feel this is going to be one of the only ways to get doctors to understand how it impacts us long term.

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

Do you forget stories or movies or articles or recognize faces but forget the plot? – Yes all the time  

Do you have jerks and twitches? – Yes in my hands, feet, head, and legs…

Do you have issues sleeping? – No I am so tired by the time I get there I pass out.

Do you find yourself easily distracted?- I use to pride my self on how focused I was on being able to complete the task at hand, now if I can sit for ten minutes and stay on one topic I am doing good.

Have you had issues with managing your finances, forgetting to pay bills or paying them more than once? – I only have four bills to pay and my wife has had to take over that because I would always forget to mail them and would wonder why why they would call the house.

Do you need help doing any daily activities, like grocery shopping?- No but I should, I can be in the store for an hour if I go by myself and only need 3 things. I will constantly forget what I am there for.  

Have you had irregular heart rates?- 
No

Have you had hallucinations?- Yes, in the beginning i had a lot of them and it scared the crap out of me. I would be driving on the Highway and I would see people standing in the middle of the road. But now it has calmed down. Only once or twice a week i will see different thing.

Have you had any blackout periods? No

Have you had any weight gain?- No

Have you had any issues with visual problems with blurriness?- Yes, some days are better then others, but my vision is getting really bad. I don’t drive often at night unless I really have to.

(Ringing of the ears does happen with CPM/EPM. It’s a form of tinnitus. 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).- No

Have you had issues with smelling?- No 

Fatigue? – Yes, 

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?- Yes can’t write anymore, my fine motor skills are shot. When typing I have to type slow because my hand twitch and jump all over the place so that can be an adventure. This is not 7 days a week, usually about 5 days.

Any issues with swallowing?-No

Any issues with understanding what someone is saying to you? – Yes, sometimes I have no idea what someone is saying and I just say ok or give them the answer I think that they are looking for.

Paranoia?- No

Depression?- Yes, some days I say why me, 

Sleep disturbances?- No

Sleep Apnea?- No

Numbness and tingling? – Yes, in my hands, back of my head and feet.

Balance or coordination issues?- Yes, some days / most days I walk like I am drunk. 

Do you have any ongoing issues with movements? like cramping, spasms, jerks, etc. Do you have any ongoing issues with memory, concentration or learning? Do your symptoms remain constant or do they come and go?– Yes, Cramps, spasms,jerks, stuttering and drooling come and go on a daily basis. Memory, concentration, learning, numbness of the back of the head, eye sight issues, hand tremors, feet tremors are 24/7  

Do you do any therapy or did you do so after being released from the hospital? – No

Have you met any doctors that have helped with your condition, neurologists/ GP? Yes, finally after going to 7 different neurologist I found one that took the time to listen and figure out how to help with my issue.

Have  you experienced new symptoms or have you had continuous improvements? – Yes new symptoms sense it first started. But the doctors say it is not progressive. 

Have you met any new people with CPM/EPM? – Yes on Inspire a web based forum for people to talk about their medical issues and concerns. Meet a new one this week. 

Did you have any treatments immediately following the injury? Like, hyperbariatric treatments, plasmaphoresis, anti inflammatory meds? – No

What are your current medications that are helping? – Carbidopa-levodopa, Baclofen, Ropinirole, Topiramate, and Tramadol. I take these three times a day. Many many pills………….      

Please feel free to leave questions or comments for me or Michael, and we can try to elaborate on anything listed. 

 

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.

Todd’s Ride:

Hi, folks.

This is going to be an ultra brief post. Todd’s story is posted on my blog, and he has made remarkable strides!

He is raising funds for CPM/EPM. I do not have all of the details, but please be feel free to check out his donations page.

 

 

My prayers and good wishes are with him and his wife as they go the distance for CPM and EPM.
Good Luck, Todd!

Ketoacidosis and Central Pontine Myelinolysis:

 

Thanks to the Ninjadoc, I have been made aware of another way that a person can develop hyponatremia, which increases their risk for CPM.

Ketoacidosis can be caused by several factors:  Diabetic ketoacidosis, alcoholic ketoacidosis, starvation ketosis and hypoglycaemic ketoacidosis. (http://qjmed.oxfordjournals.org/content/97/6/365.full)

Type 1 diabetics have an increased likelihood of developing ketoacidosis. It can also occur in those who have eating disorders, such as anorexia. Those with type 2 diabetes can also develop it, but it is not as common as in type-1 diabetes (http://www.ucdenver.edu/academics/colleges/medicalschool/centers/BarbaraDavis/Documents/book-understandingdiabetes/ud15.pdf).

So, what is ketoacidosis and how does this lead to hyponatremia?

This is a bit complicated, but I’ll try to make it so understandable that even I can comprehend what I’m talking about 😉

Ok. Everyone has a pancreas, and the pancreas has MANY jobs, but one of it’s most important jobs is to produce hormones that regulate your blood sugar. Insulin is one of the most important hormones that the pancreas produces. After you eat, your body starts to break down food and liquids into glucose. As more and more glucose is absorbed into your blood stream, your blood glucose levels increase, and your body triggers a release of insulin from your pancreas. The insulin causes glucose to be transported from the blood into muscle cells, liver cells, and other types of cells.

Insulin also prevents the break down of fats in the body.

In type 1 diabetics, there is a dysfunction in the pancreas that prevents a release of insulin or the pancreas does not make insulin. This means that when a person eats and glucose floods the blood stream, it stays in the blood stream.

Also, because there is a lack of insulin in the body, cells miss that signal that tells them to NOT break down fats.

Now, I’m not an expert on ketoacidosis, but basically because the cells are unable to use the glucose in the blood, they start to break down fatty acids into glucose in the cells. It’s kind of like having an on sight manufacturing plant of glucose using fatty acids. Also because insulin is not being produced or when a diabetic person does not take their insulin, the cells do not receive that message to stop or not break down fats/ fatty acids. As more and more fats and fatty acids are broken down, more ketones are produced as a by-product.

Ketones are acidic in nature and the build up of ketones in the blood lead to an acidic PH.

So,  ketoacidosis will usually occur when a person does not get enough insulin, which means that their cells are not getting the energy that is needed to maintain function. Those cells are also missing the signal to stop breaking down fats, so that inner cellular factory is breaking down fats in high gear.  At this point in the reaction, a person will have a very high blood sugar level (in regards to those who develop it in type 1 or type 2 diabetes), and they will also have high ketone levels. This lowers their blood PH, and is termed as ketoacidosis.

I hope that makes perfect sense 🙂 If not, please don’t hesitate to ask questions, and I will try to find the best answers for you.

A person has to go to the hospital to receive treatment for the ketoacidosis, and the treatment is a decrease in blood sugar and a restoration of the proper electrolytes.

So, at the point that the blood sugar is reaching high levels and ketones are reaching toxic levels, the body starts to try to regulate the system by flushing these toxins through the kidneys. This increases a person’s thirst and urine output which leads to dehydration. Also because there is a high concentration of glucose in the blood, the body tries to correct this imbalance by shifting water from inside the cell to the blood. It is trying to dilute the high levels of glucose by adding water. However, because sodium levels do not change this gives an impression that a person has hyponatremia. They may indeed have hyponatremia or it may just be a fluctuation of the fluid balance from in the cell to the blood.

Now according to the University of Texas Medical Branch, lab work can be misleading in cases of diabetic ketoacidosis. It can show that a person has hyponatremia, but in fact, they just have these shifts in sodium and potassium due to the high glucose levels in the blood (known as pseudohyponatremia), but they also acknowledge that in some cases, a person might  in fact develop true hyponatremia as well. Now if that seems complicated to you, don’t worry because it is. It seems in regards to ketoacidosis, you definitely have to have an expert in endocrinology oversee your care. I’m not an expert, but if you are interested in finding out more about how you can develop false hyponatremia (pseudo hyponatremia) and want to know more about it, use the following link: http://www.utmb.edu/pedi_ed/CORE/Endocrine/page_27.htm.

Now this is where things get tricky, I believe that because the causes behind the development of hyponatremia (real or pseudo) are so complex, this can lead to an inappropriate treatment of it. For instance, if a person has pseudo hyponatremia because of the high glucose levels, it is believed that once the glucose levels are corrected then the sodium levels will correct naturally as well too. This means that the water shift from the blood back to the cells will occur naturally, however, if treatment is administered in the form of saline iv solution, this fluctuation could happen too quickly and cause CPM/EPM.
It’s something to be aware of if you have diabetes or if you have another cause of hyponatremia. In other words, it is important to understand the root cause behind why a person has developed hyponatremia and make a logical and educated basis of correction from that cause or there will be a great risk of correcting the sodium levels too quickly and an increased chance of myelinolysis.
I hope that makes sense.

For more information on ketoacidosis related to diabetics, please use the following links:

http://www.diabetes.org/living-with-diabetes/complications/ketoacidosis-dka.html

http://www.ucdenver.edu/academics/colleges/medicalschool/centers/BarbaraDavis/Documents/book-understandingdiabetes/ud15.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1770770/

Have a great night!

(I also want to call out a special call out to my helpers on this article, Ninja doc and Dr. R. They both gave me great insight and helped direct me in areas that were a bit off the mark. THANKS guys 😉 )

 

Michael’s Story:

I am happy to include Michael’s story. He has been suffering from CPM since 2008. He like others saw initial improvements, but has now experienced a decline.

If you’re reading this, here’s the thing…there is not enough information available about what’s going to happen. It’s not known. The doctors will tell you: you may get worse; you may get better; you may stay the same. Isn’t that true for EVERYTHING? That’s why I feel it important to get stories from people that HAVE it, and are living with it every day out to you. BUT, I want to stress to you that it doesn’t mean that YOU are going to experience those same issues.

I would compare this blog to making a path in a forest. What they know and understand about CPM/EPM is virgin territory. Most research articles just repeat what other research articles tell them, and it always end with basically, we don’t know. I figure the best way to make a path is by asking the natives. It doesn’t mean it’s the only way, but I figure it’s a good start.

So, here we go, another account from a native:

First thing I need to say is that I am an alcoholic, I was not drinking from 2001 to 2007 then I went back out. From, the first week of 2007 to the first week of 2009, I was drinking. I have not had a drink in over three and a half year and I hope I never have another. With that said, here is my recollection of what happen to me and how I got CPM

The last ten days of 2008 I had been throwing up between 4 and 6 times a day. I didn’t feel bad, I didn’t have the flu or anything like that I just could not keep anything down. For those ten days I didn’t drink alcohol, just small sips of water and orange juice. Well on the second day of January I went to visit my mother and she took one look at me and said get in my car I am taking you to the hospital, I think you have had a “stroke” when I got to the hospital they took one look at me and thought the same thing, “stroke” so they put me in a room in the emergency room and started doing the tests. That’s when they found out my sodium level was 106. So they admitted me and started me on two IV’s to replace the lost sodium. Well looking at my medical records, (which all of this information is coming from) my sodium level went from 106 to 124 in 24 hours. So boys and girl, what happens when one of the very best hospitals in the whole world gives you almost double the amount of sodium that they should in a 24-hour time frame, you get… CPM!!! (Non- diagnosed)

So, I want to point out in Michael’s case, it is difficult to say what caused Michael’s hyponatremia. The most probable cause of the hyponatremia was alcohol. I am guessing that he started to develop hyponatremia after drinking and that caused him to get sick for those ten days where he couldn’t hold anything down. Now, it’s also very possible that he just had a stomach flu and after getting sick for so long, not being able to eat and only drinking water and OJ, caused him to develop hyponatremia, but the important thing here is that he had the chronic form. Because he didn’t develop seizures or go into a coma from the hyponatremia, his brain and brain stem had enough time to adjust to the swelling. That said, when you have chronic hyponatremia, it puts you at higher risk for CPM. Back to his story:

  With that said about 8 days after I was given CPM by the hospital the first signs started to show up. I ended up at a local hospital in basically a coma for six and a half days. They thought it was alcohol induced because there was quite a bit in my system. When I got out of this local hospital for the next 120 days were complete hell. I walked like a 90 year old man; it would take me two hours to walk half a mile. One day I fell in a snow bank and could not get up for over 45 minutes. I needed help to get in and out of chairs. In and out of cars, ect. My speech was awful; it was like English was my second language. Had to wear non-tie shoes in the winter because I could not tie them. I had little control over my bladder, and my hands shook so bad, drinking anything hot was out of the question.

Then after about 120 to 130 days had past I started to get better and things started to clear up. I could walk better and talk and things went back to normal. The company I was working for went out of business and I went and painted houses with a buddy of mine. Then after about 6-8 month I started to notice numbness and a small shake in my left hand and left leg. Not all the time, just now and then. Then I started dropping the paintbrush, which I never did. So I went to see my PCP. He ignored it few times and then finally said ok lets take a look. So on February 25 2011 I was finally diagnosed withCPM.

Sense I started dropping the paintbrush; I am back with the company that I have work for, for 32 years. I am a salesmen, have been for all of the 32 years, but I stutter, shake, have spasms, I am down to calling on one account, can only work till noon, some days English is my second language, have no memory what so ever, and my fine motor skills are gone. With out my wife I would be back to wearing non-tie shoes, tea shirts and sweat pants. So basically I am back to were I was the first 120 days of hell with this disease.

Thank you Michael!!

 

Todd’s Story: CPM

Todd and I have corresponded for the past year, and I find his story also very motivational, so I’m happy to start sharing it here. Todd’s story shows how alcohol can lead to hyponatremia, and being an alcoholic can further increase your chances of developing CPM. It’s a dangerous combination, alcoholism and hyponatremia.

Now, I want to spend time explaining some of the things I’ve hit upon before regarding alcohol.

You are at risk for developing hyponatremia if you have even one drink….however, it is very unlikely for you to develop it after drinking just one drink.

The more you drink, the more likely you are to develop hyponatremia. If you are an alcoholic, you are at great risk for developing it. You can also develop CPM/EPM if you are an alcoholic without developing hyponatremia. In other words, drinking chronically can lead to demyelination of your pontine area, basal ganglia, or other areas of your brain.

I hope Todd’s story will motivate those who are drinkers to think twice about picking up their next drink.

……Unfortunately, I don’t know how to blog, but anything I share with you is free game, my life is an open book now, I don’t hold any secrets about myself anymore. You description of the causes of CPM was explained to me as the perfect storm:

1. I am an alcoholic
2. I pounded scotch and water.
3. I was taking htc for HBP.
4. I got sick on both ends

I am starting to work on my testimony for my recovery group and will share if when I am done.

I try to wake up everyday trying to figure out why God spared my life? Everyday is a great day is I choose to make it one which I suppose about 50/50…..

Hey,
I finished ready your blog today. I know exactly what you mean because sometimes it takes me an hour to write these short little notes because I do not want to offend anyone. I’m in a quandary, I what to forward the blog address to my health care providers but can’t find the right words. There is a long story behind it: They were my clients and they fired me! My work with them was in the med-mal arena.

Hey,
Housekeeping: I was diagnosed with CPM Late December 2007. I am an alcoholic. I haven’t seen a neurologist in 2+ years, they really never wanted o bother with me. My primary care Doc’s are great. I use to go once a week but now it is once a year. The remnants of the CPM are my involuntary grunting, drooling and uncontrolled belching. I also 90% of the time have a “deer” in the headlights expression. Physically, I’m proud to tell you I am in the best condition of my adult life. Over 4 years of sobriety with 3*** and Copenhagen FREE. I’m into biking and spinning. You have to brag when you can: I burned 818 calories in today’s spinning class, a personal best.

My life partner read your Blog and is super impressed with your research. She will be way more useful than me, because she lived the CPM, I only remember certain aspects of my time in prison.

She obviously has permission to correspond with you but is still getting computer literate (I finally bought her and everyone I love a MAC) and is also busy.
We have 5 children, 2 still at home………

Hey,

I forgot to mention that my speech is not perfect. I do stutter when I get excited and my volume increases and I don’t realize it. I also cannot write that well anymore not that I could in the first place. My mother, an RN, who in retirement took me to her continuing education seminars on brain injuries, when I would look down always reminded me, with brain injuries, always give it at least 4 years for recovery.

p.s. Spinning is the best Cardio ever and it is easy on the knees.

My life partner swears that my better days are the ones when I’m active in exercise. I can remember the first time to the gym: 1/11 of a mile was a victory….then a mile…..then two and now 100 mile bike rides.

Keep up the great work.
I’m still encouraging Linda my life partner to write you, I overheard her discussing the Blog with my oldest daughter about their experience with my CPM and the surrounding events. The only things I remember are the peace of the ICU, before being admitted telling my boy to take me out if they cath me, being able to memorize the 8 questions of “Are you an Alcoholic“. Being on the general floor on the Hospital, constantly asking to be walked, because I new something was wrong. I do not remember having headaches. I’ll keep encouraging her because your story sounds familiar to what happened to me except alcoholism was the proximate cause of my low blood sodium.

Hey,
I just got back from a session of speech therapy. I went for a 4 year/50,000 mile tune up. The good news is in their humble opinion and expertise my speech is great. I would admit that normally I feel 95-98% but somethings dip below 90%, I admit the speech problem is all in my head.
One issue that they identified is my facial expressions.
“deer in the headlights” eyebrows always up and my mouth is constantly open. Two things I was not aware of.
So much for my Neurologist’s suggestion for becoming a professional poker player! At the end of the day I can feel some self confidence with my speech.

Hey,
The “deer in the headlights” look is definitely a CPM issue along with my mouth being unconsciously open 24/7 unless I’m thinking about correcting it. The toughest setback of CPM is the mental aspect: Remembering how things were before CPM, then now. Trying your hardest for minuscule gains is a bitch. Don’t be worried about the muscle issue yet. I cannot specifically say that happened to me but I definitely lost strength. Three hunting seasons ago, I could barely carry a 20 gauge and was so pissed off after the season I went directly to the gym. Three years later, I carry what affectionately call “the cannon”–Weatherby O/U 30inch 12 gauge. After this year a buddy told me to “knock off that disabled shit because you can’t fool me, I saw you dropping everything you shot.” He was right. Bottom line–we know when someone is BSing with us or is sincere. Personally I like the BS too because I like to give it out.

SO, as you can see from Todd’s story. There is hope for living with CPM/EPM. He isn’t the same person he was before the injury, but he’s making strides to make the best of his life now. I still have a lot of questions for Todd, so please don’t consider his story complete at this point, but I wanted to get his story out there.

Have a great night.

Hyponatremia: Statistics Updated:

Well, folks, I hate to say that I was right, but I was right. The number of hospitalizations due to hyponatremia increased in 2010. It is an ongoing epidemic, and one that needs to be addressed.

I’m am praying that if you read this post, you will do your part in spreading the word about hyponatremia. PLEASE, share my blog with your friends, family, neighbors, co-workers, ANYONE and EVERYONE that you know. It’s preventable, and it should be a household name.

The following information was obtained from, HCUPnet: http://hcupnet.ahrq.gov/HCUPnet.jsp

2010 National statistics – all-listed
You have chosen all-listed diagnoses. The only possible measure for all-listed diagnoses is the number of discharges who received the diagnoses you selected. If you want to see statistics on length of stay or charges, go back and select “principal diagnosis.”
276.1 Hyposmolality
276.1 Hyposmolality Standard errors
Total number of discharges 1,901,923 48,831

Weighted national estimates from HCUP Nationwide Inpatient Sample (NIS), 2010, Agency for Healthcare Research and Quality (AHRQ), based on data collected by individual States and provided to AHRQ by the States. Total number of weighted discharges in the U.S. based on HCUP NIS = 39,008,298. Statistics based on estimates with a relative standard error (standard error / weighted estimate) greater than 0.30 or with standard error = 0 in the nationwide statistics (NIS, NEDS, and KID) are not reliable. These statistics are suppressed and are designated with an asterisk (*). The estimates of standard errors in HCUPnet were calculated using SUDAAN software. These estimates may differ slightly if other software packages are used to calculate variances.

This is a table of the people above that are impacted by age:

Patient and hospital characteristics for
ICD-9-CM all-listed diagnosis code
276.1 Hyposmolality

Total number of discharges Standard errors
Total number of discharges
All discharges 1,901,923 (100.00%) 48,831
Age group <1 25,749 (1.35%) 2,251
1-17 25,657 (1.35%) 2,808
18-44 199,628 (10.50%) 7,021
45-64 586,155 (30.82%) 16,448
65-84 777,902 (40.90%) 21,587
85+ 286,523 (15.06%) 8,866
Missing * *

SO, the majority of those who are being treated for hyponatremia are the elderly. This information tends to be true for the majority of illness and disease. The elderly and children tend to be the targets for most health concerns. However, surprisingly, after the elderly between the ages of 65 and older, the next largest group are adults age 45 to 64. So, children are less likely to develop this than other age groups. I thought that was pretty interesting.

The following section of information includes additional statistics, which I found also surprising. Usually, illnesses or disease tends to target those impoverished, but that is not the case for hyponatremia. Women develop it more than men. Please take your time to read the following statistics, and feel free to ask me questions if you need assistance deciphering the figures.

Patient and hospital characteristics for
ICD-9-CM all-listed diagnosis code
276.1 Hyposmolality
Total number of discharges Standard errors
Total number of discharges
All discharges 1,901,923 (100.00%) 48,831
Sex Male 863,661 (45.41%) 22,666
Female 1,038,073 (54.58%) 26,924
Missing * *
Median income for zipcode Low 525,033 (27.61%) 21,741
Not low 1,330,533 (69.96%) 42,237
Missing 46,357 (2.44%) 4,125
Patient residence Large central metro 511,650 (26.90%) 38,083
Large fringe metro (suburbs) 460,735 (24.22%) 35,726
Medium and small metro 534,770 (28.12%) 39,687
Micropolitan and noncore (rural) 357,490 (18.80%) 18,234
Missing 37,278 (1.96%) 9,566

Weighted national estimates from HCUP Nationwide Inpatient Sample (NIS), 2010, Agency for Healthcare Research and Quality (AHRQ), based on data collected by individual States and provided to AHRQ by the States. Total number of weighted discharges in the U.S. based on HCUP NIS = 39,008,298. Statistics based on estimates with a relative standard error (standard error / weighted estimate) greater than 0.30 or with standard error = 0 in the nationwide statistics (NIS, NEDS, and KID) are not reliable. These statistics are suppressed and are designated with an asterisk (*). The estimates of standard errors in HCUPnet were calculated using SUDAAN software. These estimates may differ slightly if other software packages are used to calculate variances.

If you want to test whether apparent differences are significant, use the Z-Test Calculator. A p-value of less than 0.05 is generally considered statistically significant.

Here is the statistics for those who developed hyponatremia in 2009:

2009 National statistics – all-listed
You have chosen all-listed diagnoses. The only possible measure for all-listed diagnoses is the number of discharges who received the diagnoses you selected. If you want to see statistics on length of stay or charges, go back and select “principal diagnosis.”
276.1 Hyposmolality
276.1 Hyposmolality Standard errors
Total number of discharges 1,735,847 52,458

Weighted national estimates from HCUP Nationwide Inpatient Sample (NIS), 2009, Agency for Healthcare Research and Quality (AHRQ), based on data collected by individual States and provided to AHRQ by the States. Total number of weighted discharges in the U.S. based on HCUP NIS = 39,434,956. Statistics based on estimates with a relative standard error (standard error / weighted estimate) greater than 0.30 or with standard error = 0 in the nationwide statistics (NIS, NEDS, and KID) are not reliable. These statistics are suppressed and are designated with an asterisk (*). The estimates of standard errors in HCUPnet were calculated using SUDAAN software. These estimates may differ slightly if other software packages are used to calculate variances.

NOW, I HAVE TO SAY THIS: I NOTICED THAT THERE WAS A DISCREPANCY, A SIGNIFICANT DISCREPANCY, IN THOSE LISTED AS TO HAVE HYPONATREMIA IN 2009, AS THE ONLY DIAGNOSIS IN 2009 VS THE DATA LISTED IN 2010. WHEN I SELECTED HYPOSMOLALITY AS THE ONLY DIAGNOSIS CODE IN 2009, THE STATISTICS DROPPED TO ~90,000 PEOPLE. HOWEVER, WHEN I SELECTED HYPOSMOLALITY AS BEING A DIAGNOSIS WITH OTHER MEDICAL CONDITIONS, THERE WERE OVER 1.7 MILLION. WHEN I FUNNELED THE SAME SEARCH OPTIONS INTO THE 2010 DATA, THE NUMBER WAS THE SAME FOR BOTH SEARCHES.

WHAT DOES THIS MEAN?

I think the information was coded incorrectly in previous years, or in 2010, but it’s difficult to say which information is correct. It is accurate to say that there are millions being treated for hyponatremia each year, but it is apparently difficult to determine if they are developing hyponatremia while being treated in the hospital for other conditions or whether or not they are being hospitalized because they have hyponatremia on its own.

I hope that makes sense, but it’s important to keep that in mind when reviewing the statistics.

I hope to obtain the same information for CPM/EPM, but it’s more difficult because it is rare, and I don’t believe there is an actual single diagnosis code for it. In other words, they include CPM/EPM, in a blanket diagnosis code for central nervous system injury, which can include numerous other injuries.

Well, there you go folks. I am completely exhausted, so I am going to leave it there right now. Please, if you read my blog, and feel that I dropped the ball on a topic or think there should be expansion on a topic, PLEASE, PLEASE, let me know. I do not remember the things I’ve posted about before, and it’s difficult for me to go back and read through my other posts, so I am relying on you to keep me on track.

Thank you!

 

Deb’s Story:

 

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

In the beginning:

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

She further describes her experience:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Pity Party:

I’m almost at the one year point in recovery. It’s been a long year.

Part of me believes that I should be celebrating everything that I’ve accomplished and lived through in the past year. I probably shouldn’t be here, but part of me hates this “new” me. I am not the same person I was a year ago, and it’s so emotionally and physically distressing.

Frankly, I want to sit down and cry.

I’m sure my cognitive therapist, Angela, would tell me that’s depression, but I think it’s more human nature.

I’ve LOST something, and that something is HUGE. I’ve lost the direction of where my life was going, and I haven’t been able to figure out where this “new” life is taking me.

I’m not going to try to deny that my life wasn’t fantastic before my brain injury. I was sick then, and my life was incredibly hard, but I was able to live with those health issues. I was able to take baby steps towards my goals in life.

After I was told that I had the pituitary tumor and it could be removed, I had a solid belief that my life and health would get better. I wouldn’t be able to regain my 20’s, but I could LIVE through my 30’s.  I could manage the illnesses, and I wouldn’t get worse from that point.

Living through my life with my prior health issues was like climbing Mount Everest. Living through my life after the brain injury is like climbing Mount Everest in roller skates.

It really feels fruitless, and in this current state of mind, I would have to agree with Angela, I am depressed….SUPER depressed.

You might be wondering, why in God‘s name are you depressed right now?? You’ve made it soooo far. You aren’t in a wheelchair. You are able to do things in your life that some people are never able to do: walk, talk, eat.

All of those things are true. On one hand, I do feel incredibly blessed, but on the other hand, I feel horribly “picked” on. Why does my burden seem so much heavier than others?

I wonder if Christopher Reeves felt the same way, or Michael J. Fox? I mean, they were both in the prime of their lives when they developed incurable, life long issues, but unlike me, they turned their health catastrophes into platforms to advance medicine for spinal cord injuries and Parkinson’s disease.

Do I dare compare my life to theirs?

I don’t know enough about either person to know if they lived through anything close to what I have, but where I’m floundering and they succeeded: they turned their lemons into lemonade.

Why can’t I?

I know several people now that have CPM/EPM. I know that NFL players are killing themselves over their brain injuries.

If my goal in life was to help other people through becoming a doctor, then why I haven’t I been able to shift gears and find purpose in making hyponatremia and CPM/EPM household names? Help those with CPM/EPM and other forms of brain injuries?

I’ve spent over a month wallowing in pity, feeling more and more distressed over how my life has changed, and I would be lying if I said by the end of this post that I will spontaneously snap out of my depression and tomorrow everything will be better. I only hope that by tomorrow, I can start to develop new strategies and find help for myself that I can still help others.

All parties have to come to an end at some point, even pity parties.

 

Savannah Hardin: Murder or Medical Malpractice

Let me start by saying, Savannah’s death is a tragedy, and I pray for her family and her friends. I hope this post might help shed light upon what caused her death.

A friend of mine posted comments regarding a blog she read about a 9 year old girl who was run to death by her grandmother (Joyce Garrard) and step mother (Jessica Hardin). When I read the title, I reacted immediately like I’m sure everybody did. I believed that these abusive people needed to pay for their crime,  then I read further.

The girl was forced to run for three hours because she had eaten a candy bar! Wow, this was definitely abusive. After running for three hours, she apparently went into a seizure. At this point, the step mother (who was 9 months pregnant) and paternal grandmother called 911.

This happened on a Friday afternoon and evening, and the girl died on the following Monday while in the hospital.

The autopsy revealed that she was dehydrated and had low sodium at the time of her death.

The report also stated that Savannah had a medical condition that involved her urinary system that required her to have monthly doctor’s visits. Apparently, eating chocolate could cause her serious complications which provoked the paternal grandmother into punishing her with running.

The step mother and  grandmother are being charged with murder. The grandmother is being charged with capital murder, so if she is convicted, she will face the death penalty.

Most of the information I’ve cited comes from the following article:

http://news.yahoo.com/2-charged-death-ala-girl-forced-run-082216169.html

My question is: what really happened to Savannah Hardin?

I have very limited information regarding her personal story, but I have a lot of information regarding hyponatremia. (Please see all of my posts regarding hyponatremia to find out more about this very common metabolic condition, and its life threatening consequences).

I really believe that her death was caused by or contributed to by medical malpractice or at the very least lack of appropriate medical care.

When I read the article regarding Savannah, so many questions come to mind. Did the women give the child water while she ran?

It is commonly believed that a person can exercise for long periods of time if they are provided water. (This is the case with many school athletic programs who push children to the extreme every year as long as they provide water breaks every 20 minutes.

Most people don’t realize how dangerous water is when exercising. When a person sweats, they release large amounts of salt through their sweat. If they proceed to drink large amounts of water, this will further dilute their blood sodium levels. It is so dangerous.

If Savannah’s guardians provided her water instead of an electrolyte based refreshment, like Gatorade, then this could have caused her sodium levels to drop dangerously low.

To further complicate her condition, Savannah had a urinary disorder/disease. Depending on what type of disease she had, this might have contributed to her ability to develop low sodium.

The basic symptoms of  severe dehydration and hyponatremia are the same: headache, nausea, vomiting, muscle cramps, seizures, dizziness, delirium and unconsciousness. Some of these symptoms may occur or all of these symptoms may occur. A big differentiation regarding those with dehydration is that they stop sweating.

Dehydration rarely causes seizures though, so I believe that when Savannah experienced seizures after running, it was because she was hyponatremic not dehydrated. It would be extremely difficult to determine without reviewing all of her medical records and questioning her family.

If her family was providing her with water, in combination with her physical condition and intense exercise, this would have been the perfect storm leading to her developing hyponatremia.

Why do I think there could have been medical malpractice?

It has been recognized that the standard treatment at the time of hospitalization for dehydration is IV fluids. These fluids tend to not contain sodium at all. If a person is treated with these nonsaline fluids and they actually have hyponatremia, then this treatment can be fatal.

It dilutes already diluted blood sodium levels. This would cause brain stem and cerebral swelling, further seizures, coma and brain death.

By the time the hospital receives the lab work showing low blood sodium levels, it is already too late to change the IV fluids to a low sodium based fluid, especially in children.

Please read the following information regarding the susceptibility of children for hyponatremia and how it is supposed that it is being caused mostly by hospital malpractice:

 It has now become apparent that the majority of hospital-acquired hyponatremia in children is iatrogenic and due in large part to the administration of hypotonic fluids to patients with elevated arginine vasopressin levels. Recent prospective studies have demonstrated that administration of 0.9% sodium chloride in maintenance fluids can prevent the development of hyponatremia. Risk factors, such as hypoxia and central nervous system (CNS) involvement, have been identified for the development of hyponatremic encephalopathy, which can lead to neurologic injury at mildly hyponatremic values. It has also become apparent that both children and adult patients are dying from symptomatic hyponatremia due to inadequate therapy. We have proposed the use of intermittent intravenous bolus therapy with 3% sodium chloride, 2 cc/kg with a maximum of 100 cc, to rapidly reverse CNS symptoms and at the same time avoid the possibility of overcorrection of hyponatremia.

This same research paper also recognizes that most children that develop it are inflicted by an underlying urinary condition:

 In order for hyponatremia to develop, there must typically be a relative excess of free water in conjunction with an underlying condition that impairs the kidney’s ability to excrete free water (see Table 2). Excretion of free water will be impaired when there is either (1) a marked reduction in glomerular filtration rate, (2) renal hypoperfusion, or (3) arginine vasopressin (AVP) excess. Most cases of hyponatremia are the result of increased AVP production.

The paper discusses what I mentioned above regarding how the symptoms for the cerebral edema in relation to hyponatremia can easily be diagnosed as other conditions, such as dehydration:

Hyponatremic encephalopathy can be difficult to recognize, as the presenting symptoms are variable and can be nonspecific (see Table 3). The only universal presenting features of hyponatremic encephalopathy are headache, nausea, vomiting, and lethargy. These symptoms can easily be overlooked, as they occur in a variety of conditions. There must be a high index of suspicion for diagnosing hyponatremic encephalopathy, as the progression from mild to advanced symptoms can be abrupt and does not follow a consistent progression.

The information that is quoted above comes from:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2874061/

Now, here’s the take home message from the above article: if your child is being treated for ANYTHING in the hospital be sure they receive  .9% saline IV fluids.

I believe the hospital will be determined at least partially responsible for Savannah’s death. If the hospital had treated her for hyponatremia instead of dehydration in the beginning, Savannah might still be alive, and the reason I believe that they did not treat her for hyponatremia was because her autopsy showed that she was hyponatremic after being in the hospital for three days.  The media also implied that she was hospitalized for dehydration.

Please do not mistake that I condone the punishment the girl received: I DON’T. I really believe her punishment was harsh, but I am almost positive that her grandmother and step mother did not intend to cause her death, and I further believe that having the girl run that long did not DIRECTLY cause her death. It was a series of unfortunate events complicated by common ignorance, a medical condition, and the hospital incorrectly treating Savnnah for dehydration instead of hyponatremia.

 I hope that over the next few weeks or  months, more information becomes available so that people will better understand what happened to her.

We live in a democratic society, in which a person is presumed innocent until proven guilty. In our country, this has changed. We now get our information from the press, and we are quick to become the jury and the judge in such cases. I wonder if it will be a matter of time before we regress to a time where we will prosecute a person without a trial. This seems especially true in cases that involve children.

Who needs a judge or a jury, we have the press!

It is easy for me to sit back and criticize people for this type of reaction, but I am the same way. I read a story about a woman who microwaved her baby to death while in a drugged stupor, and my first reaction is that woman deserves to die a horrific death.

However, I refuse to read what the press publishes and believe that it is the whole story.

I may have several ideas as to what happened to Savannah, but it’s based on my very limited information. In order to know exactly what happened to her, a person needs to know: how long she ran; if she was provided fluids and what kind while she ran; what the treatment was that she received when she was transported in the ambulance and at the hospital; did the hospital recognize that she was hyponatremic and/or how long did it take for them to figure it out; what type of medical condition did she have and what was her urine osmolity?

If you are reading this, I pray that you pass this information along. It’s important that people know and understand the dangers involved with hyponatremia, especially regarding children. The more people realize the threat, the more pressure there is on a hospital to change their procedures for dehydration, and the fewer the number of children who will die or be forever brain damaged from hyponatremia.

UPDATE: According to news sources like the Huffington Post and ABC news, Jessica Hardin (Savannah’s Step-mother) is in the process of working out a deal with the prosecutors. Hopefully, the charges will be reduced, or her bail will be dropped to $500,000.

I do believe that there was a medical condition that caused Savannah to suffer from hyponatremia and that led to her death. I am hopeful that the charges will be dropped completely if it was, but unfortunately, innocence comes with a price.

http://www.cbsnews.com/8301-504083_162-57517645-504083/jessica-mae-hardin-ala-stepmom-accused-of-savannah-hardins-running-death-seeks-lower-bond/

Hyponatremia: Children

I know I’ve mentioned that children are at risk for hyponatremia, but this is a growing epidemic.

Here’s the thing: children can be at great risk because when they go to a hospital for treatment they receive a general IV which is usually lacking in sodium. When this happens, a child’s blood sodium level becomes diluted to point of hyponatremia.

At this point the child’s brain begins to swell and their brain is larger at this point compared to the size of their skull VS that of an adult. In other words, a child’s brain is fully developed at 6, but their skull doesn’t become fully developed until around age of 16. This gives a child’s brain less room to expand, and so they are more likely to develop injury.

Use the following link to find out more:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2874061/

It is suggested in this article that a child should be given IV fluids containing .9% saline whenever treated in the hospital. This includes ER visits.

Because the early symptoms of brain swelling are common symptoms of nausea, headache, vomiting and lethargy. This article suggests that their blood sodium levels be checked at the presentation of these symptoms.

I’m not sure what it is with me tonight, but I’m at a point of loss right now. I just can’t concentrate fully. The article I have cited above contains extremely pertinent information for the treatment and prevention of hyponatremia in children. It is also a recent article from 2010.

I highly recommend if you have a child who is in the hospital who is being treated for any disorder, make a copy of this article and go over it with your pediatrician or your treating physician.

At some point in the future, I will attempt to edit the post to a more complete form, but I really find that the information itself is important enough to publish even in this rough draft form.

May you never need to use it personally.

 

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