Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Archive for the category “Central Pontine Myelinolysis/ Extrapontine Myelinolysis”

12 Jan 2012

CPM/EPM: Count your blessings:

I realize that if you are reading this, then you have most likely been impacted by hyponatremia and/or CPM/EPM. For that, I am sorry. With the information I have found in the months since I was injured from it, I am absolutely certain that this can be avoided!

If you haven’t been impacted by it yet, thank you for being proactive in learning about it. As you age, you are more at risk for it, and it becomes more likely that you will have a more difficult time recovering from it. To put it bluntly, you are at an extremely high risk of perishing from it, the older you are.

I guess that’s true of everything, but if you have knowledge of what this is and how it should be prevented you have a better chance of surviving.

One day, I hope that awareness will become so universal that hyponatremia and CPM/EPM will be prevented from ever happening. Please make this one of your missions too. It takes just a few seconds to hit the “like” button or to send this link to your friends or family members. Getting the word out is what will save lives!

So, if you have been impacted by hyponatremia, I hope you aren’t facing CPM/EPM. In my previous posts, I listed the symptoms that impact most people who are injured.

I also touched briefly on the widely unknown measures that can be used to reverse the consequences of having your sodium levels raised too quickly and the widely unknown treatment options.

If you are not one of the ones fortunate to escape the devastating harm of the brain injury, I want to stress to you; you are not alone! As long as I’m able, I will try to help you.

I find one of the hardest things to do when you’ve been inflicted with CPM/EPM is to count your blessings. When I was diagnosed with it, I felt vindicated. I had returned to the hospital that had treated me 3 times to try to get help. I won’t go into great detail here regarding my story, but I was basically looked at as if I was on fire. I was turned away from the ER twice with the diagnosis of a migraine, and the third time I went back to the same hospital (with significant impairment), they wouldn’t do the MRI that I needed and requested. Instead, they wanted to admit me to the  hospital for further observation.

As I mentioned previously, CPM/EPM can be life threatening. I was demonstrating obvious problems, something akin to having a stroke, and they weren’t taking immediate action. I decided to go to a different hospital at that point. I hoped the bigger more prestigious hospital would be more equipped to handling the situation, as well since they didn’t cause the problem, so they would be more likely to diagnosis a problem they didn’t create. I was right.

When I found that I had CPM/EPM, I was terrified. When I had started to develop my first symptoms, swallowing issues and speech problems, I knew what was wrong, but I didn’t know very much about it at all.

I had just read the generic stuff online, and it was pretty scary. It said that I could go into a coma, die, or develop locked in syndrome. Once I knew I had EPM, each day that I woke up, I felt more and more grateful.

I’m alive and I’m not a vegetable. At the same time, I was absolutely terrified because these new changes were significant.

How would I be able to survive as this new me?

My doctors and my friends and family were incredibly optimistic, but as they saw improvements, I saw the differences, the changes, the difficulties.

I have to say with 110% conviction, IT IS EASIER FOR THEM TO SAY IT!

You are LIVING it. That said, I AM living with it too, and I can tell you with absolute certainty, unless you die, you will see improvements. It’s a matter of degree.

I can not guarantee that if you were in a coma for 3 weeks or suffered from locked in syndrome for 6 weeks, that you will ever be running marathons or even doing basic math in your head, but you are here and you are important and you can expect improvements.

Give yourself time, and continue to do what you’re doing, making an effort to get yourself help and to find support. Contact me if you need me.

There are online support groups that can help you. You can find people, normal people, struggling every day with the same problems you are, and there is nothing better than to know you are not alone.

Your friends and family probably don’t get it, and frankly, most of them don’t want to hear about it. Don’t judge them for that. In most cases, they just don’t know what to do or say. Seriously, before you became ill, would you act any differently?

That said, I know a few people who have it. I consider you part of my family if you have it. You have a private pass to my club. 🙂 And I will do anything I can to help you.

So, now you have one more  blessing to add to your list.

Here’s the thing, if you do have this, and you are like me. You’ll feel better knowing that there is at least one more person out there who has it. You aren’t completely alone, but that only goes so far. It doesn’t take the sting out of not knowing how YOU will be impacted by CPM/EPM.

Frankly, it’s depressing. It’s scary. It’s hard. I was diagnosed six months ago, and I’m still having issues. TRUST ME, my symptoms have improved greatly from where I was, but not being 100% back to my former self is difficult.

Trust me, there are days when I do cry. There are days when I want to go back to the hospital that treated me, and I want to SCREAM at the doctors.

I’m giving you permission to be angry, upset, cry, yell. It’s a benefit of being a member of my club, BUT what I refuse to let you do, is give up. You are not allowed to give up or give in, NO MATTER, how desperately you want to.

Further more, if you ever feel the urge that you just can’t handle it another day. You’ve had all the twitches and stutters you can take, I want you to promise me that you will get help!

You have to promise me that if one day becomes just too difficult to take that you will go to an ER, call a friend, and/or click on the link below:

http://www.ulifeline.org/main/page/53/SuicidePrevention?gclid=CI6dzPXYya0CFcvCKgod-F6sIg

You can actually seek help via online chat:

http://www.preventsuicide.us/hopeline-new/aliveim/index.html

You can always reach out to me as well. I’m here for you, and I KNOW how it feels.

With my next post, I promise to bring more information regarding CPM/EPM…like maybe how the symptoms can impact you or the doctors that you can reach for more help, experts if you can consider them that (they have at least heard of it).

Many blessings!

Posted in Central Pontine Myelinolysis/ Extrapontine Myelinolysis and tagged , ,
09 Jan 2012

Treatments: NEW INFORMATION

Ok folks, I’m really hoping to keep this post short and sweet.

My last post had information regarding treatments for CPM/EPM. Guess what, I have found new information suggesting there are treatment options for CPM/EPM.

I was shocked to discover that once your sodium levels have been corrected too quickly, you are not destined to CPM/EPM. You doctor has the ability to PREVENT CPM/EPM AFTER your levels have been corrected too quickly. Research has shown that there is an approximate 5 DAY window in which your doctors can LOWER your sodium levels back to abnormal, approximately 120. If they do this after your levels were raised too quickly, within 5 days, CPM/EPM can be avoided!!!

The above information was discussed as early as 2005 and 2007: http://www.wisconsinmedicalsociety.org/_WMS/publications/wmj/pdf/104/6/56.pdf and again in :  http://www.ccjm.org/content/74/5/377.full.pdf and again in:

This type of treatment has been extremely successful in preventing CPM/EPM. I DO NOT UNDERSTAND WHY DOCTORS DON’T KNOW THIS or DO NOT PRACTICE THIS. I’m really at a loss over why my doctors, who admitted to me that they raised my levels too quickly, did not have the knowledge to do this. It turns my stomach to think that this might not be COMMON knowledge among doctors. WOW.

Since this might not be common knowledge among doctors, PLEASE take it upon yourself to inform them if you are in this situation. You might be able to prevent your brain damage after all!

That said, I also found additional treatment options! I went to one of the major teaching hospitals in this country for treatment of my CPM/EPM, and they DID NOT offer this! They told me that there were NO TREATMENT OPTIONS. Imagine my shock and dismay at finding research to the contrary. It really makes me sick to my stomach to think not only could this have been COMPLETELY PREVENTED, it could have been TREATED. 😦

That said, these treatments have not been clinically proven to work. There haven’t been any control group studies.

I mean, here’s the thing, CPM/EPM is uncommon. It’s not like heart disease or cancer where people can enroll in studies to test therapies, so your doctor may or may not know about these treatments. If they know about them, they are not going to suggest you forgo the treatment since it hasn’t been studied in a controlled study. They will suggest to do the treatment. If you don’t do the treatment, you have an approximate 67%  probability of having some type of neurological deficit for the rest of your life.

The research studies did not report ANY side effects (I’m sure there are), so proceeding with these unstudied/ unproven treatments would be the best thing. Furthermore, all of the case studies that were listed had a 100% recovery when given the treatments.

In other words, there needs to be more research regarding CPM/EPM, but in the mean time, if you are facing permanent neurological issues, try these treatments that have shown effective in treating the brain damage. What do you have to lose???!

Here are the additional treatments that I did not mention previously:

1.) plasmaphoresis

2.) TRH  (thyrotropin releasing hormone)

3.) immunoglobulins

4.) methylprednisolone (the cleveland clinic journal also listed dexamethasone, but it did not provide information regarding its effectiveness.)

This information comes from :http://www.wisconsinmedicalsociety.org/_WMS/publications/wmj/pdf/104/6/56.pdf

It has also been reported in several additional journals.

There are also natural remedies that have been recommended. I will post more information on possible natural treatments as well.

Please feel free to post any information you have in regards to treatments you might have been given for CPM/EPM.

Thank you for reading!

Posted in Central Pontine Myelinolysis/ Extrapontine Myelinolysis and tagged , ,
07 Jan 2012

CPM: Treatments

I hope you are doing well. It has been several days since I posted last. I could list several crazy reasons: I was in the hospital having a sleep study. They didn’t have WiFi at the hospital, so I couldn’t use my laptop. Tom was sick. However, honestly, the biggest reason is I didn’t know how to continue with this topic.

It might seem obvious that it is easy for me to get distracted and get off topic. (I hope not). I think my last post on CPM/EPM might have demonstrated this a little more than normal.

I covered a lot of material in my last post. Several of the topics I mentioned, I feel, could be made in to separate posts. I might try to do this at a later time, which means that I might have some topics come up more than once. Please be patient.

Okay, so CPM/EPM treatments:

There really aren’t any treatments, as far as a cure. You will find this information on any resource regarding CPM. For your convince, I’ve included this quote from, http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001779/.

There is no known cure for central pontine myelinolysis. Treatment is focused on relieving symptoms.

The following quote is from a study that suggests the following has been used in the treatment of it:

Case reports have suggested that steroids, intravenous immunoglobulin, and thyrotropin-releasing hormone may be helpful; however, there are no findings from a large-scale trial to support the use of these therapies.

(http://radiographics.rsna.org/content/29/3/933.full)

You may be given prescriptions for movement disorders (tremors, shakes, twitches). These are usually the same type of drugs that treat parkinsons. You may be given pain meds. You might need to see a pain management specialist. You may need anti anxiety/anti depressants. You may need medicines for insomnia or for central nervous system sleep apnea.

You may need on going physical and occupational therapy. You will probably need speech therapy.

You will probably be given anti-depressants or anti- anxiety medicines because let’s face it, the pill you are forced to swallow is unbelievably bitter.

I know that sounds a bit scary. It is. It is terrifying because the doctors have no way to know what is going to happen to you, so they won’t be able to provide you with much information.

If they’re honest with you, they will tell you that you could slip into a coma at any point in time, die, or slip into something called locked in syndrome.

In a series of 44 patients, myelinolysis
occurred after a mean of 6.3 days (range 3–11)
and resulted in a “locked-in” syndrome in 23
patients.

The above information was provided by: http://www.ccjm.org/content/74/5/377.full.pdf

Personally, I think the locked in syndrome is the most terrifying because you will lose all ability to move. It’s a FULL body paralysis. The only thing that you will be able to move is your eyes, but you’re aware of what is happening.

Some studies state that you are at risk to develop these severe health issues (coma, death or locked in syndrome) up to 12 weeks after developing CPM/EPM. Other studies, suggest that it is up to 8 weeks. Frustratingly, there is not enough information regarding CPM/EPM to know for sure.

In most cases, the hospital will keep you under observation for at least 7 days depending on how severe your symptoms are. In other cases, you may be hospitalized for up to 21 days for observation. If you go into a coma or locked in syndrome, you may be hospitalized for 4 to 12 weeks, if not longer.

Here’s the thing, if you are being released in this 7 to 21 day period, I highly recommend that you remain in contact with your doctors that were monitoring your for the CPM/EPM. If you experience ANY changes after being discharged, GO TO THE ER. Err on the side of caution with CPM/EPM. Being wrong is better than being dead.

If you’ve developed CPM/EPM, you’re already unlucky. You’ve already fallen into the less than 1% to 5% range by developing it, and NO ONE really knows what will happen, so err on the side of caution if you experience ANYTHING that gives you concern.

I want to stress that it’s important to return to the hospital that was treating you because most hospitals have never treated a patient with CPM/EPM. Most doctors have only read about it in textbooks. If your hospital treated you, then they might have experience with it.

Your life has just been changed tremendously. If you’re reading this, then you are EXTREMELY luck and terribly unfortunate at the same time. You are terribly unfortunate in developing CPM, but EXTREMELY lucky that you are even alive.

It’s going to take time to adjust to your new abilities, and your journey is just beginning.

Now, here’s the thing. No ONE knows what is going to really happen with you.

Depending on the severity of your symptoms, you may improve significantly. Some research suggests that you may recover COMPLETELY.  However, I question this on the basis that research is vague.

In long-term
follow-up of 32 survivors of the acute phase of
central pontine myelinolysis, 11 had no functional deficit, 11 had minor neurologic
deficits, and 10 had severe deficits requiring
dependent (ie, long-term) care.

The above quote comes from the article used previously. Use the ccjm.org link above to access it.

The widely used study above suggests, that 1/3 of patients will recover, a 1/3 of patients will have symptoms but live independently, and a 1/3 will need to have assisted living.

This study was vague. It didn’t say how long the patients had CPM. Was it 3 months, 6 months, 10 years after developing it?

I would like to suggest that unless you die, you are going to improve. I would like to suggest that everyone who has CPM (except for those who die) will improve to some degree to an almost normal, pre-injury state. However, it is not known if this type of improvement is absolute or to what degree you will improve.

The study quoted above, also explained that depending upon the location of the lesions, a person might experience a decline in neurological abilities. I know several persons who have it, and after a period 2 to 3 years, they begin to experience a deterioration in their neurological symptoms.

Some studies have stated that the majority of persons who have CPM, die within 5 to 10 years after developing. More than half commit suicide.

Please be aware, if you are a care giver for someone who has CPM, that more than half commit suicide.

Because of this alarming statistic, I highly recommend getting your loved one supportive psychological therapy. I also recommend that they participate in online support groups.

Brain injury support groups offer a great help.

I looked for months, and found only a handful of people who have CPM through inspire.com.  We’re kind of outcasts since there are so few of us, so we don’t really fit into any other neurological support groups.

I hope to change that at some point in time, but right now, please contact me with questions. Please post your story for others to read. Together, I hope we can prevent people from going through this horrible experience.

 

UPDATE:

It is always depressing to learn that there are TREATMENTS for CPM/EPM, and to know that I could have been fixed if I received one of these treatments! I hope and pray that if you have CPM/EPM or know of someone who has been diagnosed that you will get this information during a period when it can provide relief. The following quote comes from an abstract, so if you provide this information to the doctor, they should be able to get the treatment information:

Clin Neuropharmacol. ;23 (2):110-3  10803802  Cit:11

go to Pubmedgo to Scholargo to Googleshow EndNote Citationshow BibTex Citation

Update citations of this paper

        Neurological Department, Neurological Hospital Rosenhügel, Vienna, Austria.
Although the exact pathogenesis of central pontine myelinolysis (CPM) is unknown, correction of hyponatremia, thyreotropin releasing hormone, plasmapheresis, and corticosteroids seem to be effective. Assuming intravenous immunoglobulins (IVIG) to also be effective in CPM, 0.4 g/kg body weight/d immunoglobulins were applied to a 48-year-old patient who developed CPM with double vision, dysarthria, dysphagia, and left-sided hemiparesis 3 weeks after spontaneous normalization of hyponatremia. After 5 days of IVIG, his symptoms markedly improved, confirmed by improvement in the Norris score (42%), Frenchay score (19%), Kurtzke score (20%), Disability score (54%), vital capacity (26%), and peak torque (69%). The promising clinical effect of IVIG was assumed to be caused by the reduction of myelinotoxic substances, the development of antimyelin antibodies, and the promotion of remyelination. In conclusion, IVIG appear to be a promising therapeutic option in CPM.
Posted in Central Pontine Myelinolysis/ Extrapontine Myelinolysis and tagged , , , ,
03 Jan 2012

CPM/EPM–What to expect:

English: Central pontine myelinolysis, MRI FLAIR

English: Central pontine myelinolysis, MRI FLAIR (Photo credit: Wikipedia)

I hope for those who are reading this, you are in good health or your loved one is.

If you developed a chronic form of hyponatremia, you are at risk for CPM if your sodium levels were raised too quickly.

Too quickly is not an absolute term. There are person’s who disagree on what “too quickly” means in regards to the treatment of hyponatremia.

Some specialists believe that too quickly is greater than 8 mmol in a 24 hour period. Other specialists would consider “too quickly” as 12 mmol in a 24 hour period.

I would recommend the safer the better no more than 8 mmol in a 24 hour period.

Bottom line, if your levels were raised more than 8 mmol in a 24 hour period, and you started to experience symptoms of CPM/EPM in a period of 3 to 10 days after your treatment for hyponatremia, it was raised “too quickly” for your system.

If it is raised more than 8 mmol in a 24 hour period, you are at risk for CPM/EPM. It doesn’t mean you will absolutely develop it.

I caution you to watch for symptoms during the next 3 to 10 days after treatment if you know your levels were raised at this rate or faster.

When you first start to develop CPM/EPM, your symptoms can vary, but will usually begin with muscle weakness, possible fatigue, headache, muscle stiffness, twitches/spasms/ jerks, trouble swallowing, issues with balance and coordination, visual issues, speech issues (stuttering, slurring or inability to form words), cognitive difficulties, issues with understanding speech, reading, and/or writing. Most importantly, a person can develop complete paralysis (locked-in syndrome), coma, and/or death.

I know, that’s enough to make your heart skip beats. Try to stay calm. This is a huge list of symptoms, and it does not mean that you will develop each one. You are at risk for them.

It is a serious condition, and you need to go to a well equipped hospital immediately, if you were recently released after receiving treatment for hyponatremia and have started to develop any of these symptoms.

It is not worth risking your life. If you are not certain if you are really experiencing these symptoms or not, but were recently treated for hyponatremia and “feel” as if something isn’t quite right, go and get it checked out.

The best way to determine if you have CPM/EPM is to have a T1 and T2 weighted MRI with contrast performed. It must be done with contrast.

***PLEASE KEEP IN MIND, THE DAMAGE ASSOCIATED WITH CPM/EPM MAY OR MAY NOT SHOW UP ON THE MRI FOR 2 TO 4 WEEKS!!! AN MRI IS NOT AN ABSOLUTE WAY TO DETECT IT. IT IS THE BEST WAY TO DETECT THE DAMAGE. ALSO, THE IMAGES CAN START TO SHOW SIGNS OF IMPROVEMENT IN 4 TO 6 WEEKS!!!****

Yeah, I know, this makes it really difficult to diagnose. By the time you begin to develop symptoms, they might not be able to see the damage on the MRI. If your doctor waits too long to take an MRI, the lesions can heal. JUST BECAUSE THE LESIONS HEAL DOES NOT MEAN THAT YOUR INJURY IMPROVES.

This can lead to a misdiagnosis of Parkinsons. Some of the longest lasting symptoms a person may experience are movement issues (tremors, jerks, spasms, etc). So, it is not uncommon for a person to be misdiagnosed as having Parkinsons.

It is also not uncommon for a person to be incorrectly diagnosed as having a stroke, especially in the elderly.

So, what does this mean?

It means that you should spread the word regarding CPM/EPM. The more the public becomes aware of CPM/EPM, the less it will occur. In this case, prevention is the best way of defeating this disorder.

It is important for people to be aware of the symptoms associated with CPM/EPM. It is important for you to obtain your medical records if you developed any of the previously mentioned symptoms after your treatment to determine how quickly your sodium was raised.

If you experienced any of the above symptoms and your sodium level was raised faster than 8 mmol in a 24 hour period, it is very possible that you developed CPM/EPM.

If you’re making this discovery long after your treatment, you will still want to contact your doctor to request an MRI.

I would highly recommend contacting a neurologist who is experienced in treating CPM/EPM. Trust me, this is easier said than done. I will post information on some of the doctors who are associated with treating CPM/EPM, but please be aware that these doctors are few and far between.

That’s because there are approximately only 2000 cases “documented” each year. Now this number is under dispute. I received this number from the website I reported in my earlier post for hyponatremia. (I will insert it again in the near future). However, my friend, Jeffrey, who was trying to develop a CPM awareness support group, received information from the National Institute of Health that this number could be as high as 30,000 to 50,000.

WOW! That’s a huge difference. How could this be possible?

Well, it’s possible because CPM/EPM is almost 100% caused by medical malpractice, and more than half of those who develop it, die. Those who develop hyponatremia and CPM/EPM are usually being treated for other disorders, such as traumatic brain injury or major burns, etc. In other words, hyponatremia is common as a secondary illness.

To protect the hospital and doctors from a malpractice lawsuits, it is believed that in cases where hyponatremia is a secondary condition that leads to CPM/EPM, the hospital and doctor will list the cause of death as being from the burn, the brain injury, cancer, etc.

For those people who do not die, it is suspected that the hospital/ doctor will tell the patient or their families that the reason they are experiencing these new physical symptoms is because they are having side effects or reactions to the illness or treatments.

Even if there are 30,000 to 50,000 people who develop CPM each year, that is not a huge number of people. Consider the reported fact that at least 1.5 to 1.7 million people develop hyponatremia each year, this means that less than 5% of those will develop CPM/EPM. The reported statistical data suggests that only .03% to .15% of those who develop hyponatremia will develop CPM/EPM. According to recent statistics (which again can be very vague), approximately 500 to 2500 were reported in 2010-2011. I believe that these statistics aren’t extremely accurate due to the drastic variations that were reported from one year to the next.

It is extremely difficult to know for sure what is accurate and what isn’t. I will try to resume the research Jeffrey was uncovering, but his unexpected death due to complications from CPM has made it difficult.

I will report it and update my blog accordingly.

So, what does this mean? YOU need to be your own advocate. You need to access your medical records and determine if your levels were raised too quickly. If you are currently in the hospital, track your sodium levels as they raise it. Be sure you question your doctors regarding your treatment. If you are conscious and able, access information regarding the medicines that you are being given.

If you were recently released from the hospital, TRACK your symptoms. If you start experiencing any subtle changes, go to a DIFFERENT hospital from where you were treated for hyponatremia and demand that they do a MRI.

I literally had to drive to a different city and a major hospital. No one believed that I could have CPM/EPM.

Be adamant. It is also helpful if you provide the new hospital with the records for your treatment.

In most cases, you won’t have issues with being admitted for the problems you are experiencing because it is painfully obvious that there is an issue. Be sure that you have a representative who can speak for you, such as a friend or family member. Make sure you have your living will and/or power of attorney up to date.

It is not uncommon for a person to experience a temporary recovery from their HYPONATREMIA symptoms once their sodium levels are corrected. It is a brief window of relief before you begin to experience different neurological symptoms from CPM/EPM.

The window, as mentioned previously, is approximately 3 to 10 days after your sodium levels have been stabilized. It is the quiet before the storm.

I would use this time frame to prepare if your levels were corrected too quickly. It’s better to be safe than sorry. Try to get as many of your affairs in order as possible, and obtain your medical records from the hospital.

Remember, there are only a very few who experience issues with CPM/EPM, but if your sodium levels were raised too quickly then you are at a greater risk for it.

This is by far, one of my longest posts to date. I understand I’ve repeated some of the information over and over again, but you will only have this opportunity once. It’s absolutely necessary for you to do everything right from the start because there is no room for errors once you start down this road.

I hope this finds you in good health, but if you are one of those being impacted by CPM/EPM, please take comfort in that you are not alone. I hope my message can help you or your family cope with this road bump.

Many blessings!

Posted in Central Pontine Myelinolysis/ Extrapontine Myelinolysis and tagged , , ,
31 Dec 2011

What is CPM/EPM?

If you’re reading this, you or someone you love has probably been diagnosed with CPM/EPM. First of all, I’m sorry. My heart goes out to you or your loved one that’s inflicted with this disorder.

Right now, you’re probably confused, angry, depressed, and scared. You have no idea what’s going on, except your body isn’t right. You aren’t right. You might feel crazy because things that you experience can vary so dramatically. Let me offer you this solace; you are not alone.

You want answers, and you can’t find them. You want a support group, but there isn’t one.

Your doctors don’t have many answers either, or you’ll get conflicting information from the different doctors you see.

The information you find online is repetitive, but not very informative. Trust me. I will go through dozens of websites, and the information is verbatim from what was posted by the National Institute of Health.

Right now, you might feel that the answers to your questions are coming from a magic 8 ball.

I hope to give you more depth information, but I want to stress to you that there is no definitive answer with CPM/EPM. It is rare. There are not long term case studies. You will find research papers that have gone through hospital records to study CPM/EPM cases because it is difficult to find more than just a few current cases in a state during a specific period of time.

There is not a lot of research that has been done on it at all, but the long term studies that have been used are done by going through hospital records. I find those studies are vague.

How it impacts you, may not be the same as how it impacts me.

I know it doesn’t sound too promising. I hope to give you more direction, more help, more answers, but I can’t say that you will fit into everything I post. You may. You may not. There is no absolute.

Ok, so what has happened to you or your loved one:

Lesions have developed in your (their) brain. It’s caused extensive neurological and functional damage.

Why has this happened:

The majority of CPM/EPM cases are caused by the too rapid correction of hyponatremia; however, there are a handful of other people that develop it outside of this category. I’m going to try stay focused on the majority and over time, I hope to cover some of the reasons outside of hyponatremia for developing it.

What can you do to fix it:

There is no definitive treatment for CPM/EPM. There have been studies where they have tried steroids to reverse the effects of the damage or prevent new damage from occuring, but this was inconclusive.

Honestly, I would recommend trying it. It can not harm you, and it might help, but again that treatment is inconclusive. Other than that, the treatment is supportive.

What does that mean? It means, they will do everything they can to prevent you from dying, and they will minimize your symptoms.

So, let me explain a little bit more in detail what’s happened to your brain. (I’ve explained a little bit of this previously in my posts on hyponatremia, so if you’re followin my posts, please bear with me).

When a person’s sodium levels drop below normal, certain cells experience a shift in water. The major system effected by this shift is the nervous system. Your brain cells begin to swell from fluid. This type of swelling happens in both acute and chronic hyponatremia.

In acute hyponatremia, the cells swell so quickly that it can lead to rupture of the brain stem and significant cerebral swelling. This type of hyponatremia produces immediate dangers and has a significant risk for death, coma, and/or seizures.

If a person has chronic hyponatremia, the drop in blood sodium happens slowly. Most people will associate chronic as meaning in months or years, but this isn’t what it means in the case of hyponatremia. Chronic in regards to hyponatremia means approximately 48 hours to several weeks.

If a person has the chronic form of hyponatremia, then their brain cells also swell, but the swelling is more gradual, and their body has time to adapt. This is the reason why persons with chronic hyponatremia, despite feeling sick, will be more alert and less severly symptomatic than a person with acute. They are at less risk for immediate death, but they are at greater risk for CPM/EPM if the treatment isn’t performed correctly.

If a person has chronic hyponatremia, they still have brain cell swelling.

If the sodium levels are raised too quickly, the water “rushes” from the brain cells, and this causes the cells that form the myelin sheath and cells that produce myelin to be destroyed or damaged.

This is a very generic description of what happens, and there is debate on how the damage occurs, but this is the most widely used description.

Myelin is a layer of cells that coat the axons of nerve cells. It’s considered a fatty sheath that insulates the nerve cell and allows for rapid conduction of nerve impulses.

Most people will explain myelin as being like the sheath that surrounds electical wires. This is somewhat accurate. I think the most important point regarding that analogy remains true: if the electrical cord wears, the connection becomes bad. The item may or may not work after that or may work intermittently.

Due to the whitish appearance of axons covered in myelin, areas of the brain that contain myelin are called white matter. These specific areas of the brain tend to be damaged with the rapid correction of sodium.

The damage can not be detected through a CT scan. It can be detected by MRI.

The areas of damage will show up as a brighter white area on the MRI scan in a T2 scan. Contrast dye does not really make the lesions more distinguishable, but most doctors will order the MRI with contrast. In a T1 scan, the lesions show as hypotense. These are the same lesions, it just shows up differently depending on the scan that was used.

If the pontine area is abnormal, the condition is called central pontine myelinolysis. If areas outside of the pontine area are affected, the condition is called extrapontine myelinolysis.

The injury may be limited to only the pontine area. It may be limited to areas outside the pontine only, or you may have both pontine and extrapontine injuries.

Let me stress, these are very generic descriptions and in the following posts, I will go into great detail regarding what all of this means, and what the research I’ve found says regarding these topics.

Please consider this post as a savory smell of the roast that is in the oven. It’s not even a taste of the information that will be exposed in future posts.

I hope this post finds you in good health.

 

Posted in Central Pontine Myelinolysis/ Extrapontine Myelinolysis

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