Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

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!

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5 thoughts on “Hyponatremia: What you should really know to prevent CPM and EPM.

  1. Hi, I was diagnosed with CPM on December 12th 2013, I have absolutely none of the known causes nor did I have anything corrected, but I do have a genetic connective tissue disorder called Ehlers Danlos Syndrome Hypermobilty Type as well as having a diagnosed Pontine Tegmentum Cavernous Malformation which has been causing me neurological issues since August of 2012 without any visualized hemorrhages on mri, of which I have had many. The only thing that changed recently is I was on a trial of Lyrica 25mg for nerve pain caused by an injury exacerbated by my underlying EDS, I was on day 7 on them, as well as managing to get my first ever UTI during a Urogynaecology consult and being prescribed Macrobid 100mg twice a day for 5 days which I started taking on the second day after I started the Lyrica prescription. And on the last day of the Macrobid prescription I received a Depo Medrol cortisone shot in my right thigh for burstitis caused by a torn (hip) labrum I also have due to the EDS. And I had my period. Two days later I started feeling weird and stopped taking the Lyrica because I thought it might be the cause as the Macrobid had already ended and I didn’t seem to have an allergic reaction. Two weeks after I stopped taking all of them and a week after I lost control of my body and stopped being able to swallow for a few days (which terrified me), they did an mri assuming it was the cavernoma and instead found the cavernoma exactly the same as on all other mri’s but this time I had developed CPM, so two distinct and sepearte issues both in my pons!! The neurosurgeon went on to tell me that CPM is caused by substance abuse but I don’t drink or do drugs and this was the first time since 1994 I have had any medications in my body as I am allergic to pretty much everything. The neurosurgeon gave me the diagnosis and left the room, and I was sent home and that was it, no care, no treatment, no explanations, no help… so I have sat here watching my body do the craziest of things for days and no one has any answers for me, the neurosurgeon said he was trying to find me a neurologist and would get back to me once he found one but in the mean time nothing! I have improved greatly since those first few terrifying days but am still having some issues.

    I have read through your entire blog, read all 47 pages worth of CPM research articles on PubMed, as well as all posts I could find on Inspire, which I was already on due to EDS and the cavernoma so on the EDNF board and CCM board but happened to Google CPM and your discussion on there came up which lead me here. I hope you are doing as best as you possibly can be given the situation and circumstances you have been forced to deal with. Your blog has been of great comfort to me personally the past week and a half knowing that someone else out there has gone through this and how you have found ways of dealing with it. Thank you so much for sharing your journey. If you are available and would like to communicate you can find me on Inspire under BendyBrainstemmer (Bendy is the nick name for being Hypermobile, aka Ehlers Danlos Syndrome Hypermobility Type, and Brainstemmer is the nickname for those with brainstem cavernous malformations, aka cavernomas, aka cavernous angiomas- seems no one could decide on one name for the disorder so they figured they would confuse a bunch of patients already suffering from neurological deficits by using multiple names for the same thing!)
    Take care of you:)

  2. First, I hope you’re doing ok. I can’t thank you enough for writing this blog! It’s been hard not understanding what happened, and I had no idea why I had new symptoms after being treated and released. Please read my brief story and let me know your thoughts on whether MRI is advisable in my situation.

    I was hospitalized 1 week ago for Hyponatremia, and was in the hospital from Friday to Sunday. They attribute it to diarrhea. I was also having headaches and a radical vision change they did not diagnose. My sodium was 117, they started IV fluids around 5:00 pm, and by Sat 5:00 am it was 134 — just 12 hours later. Saturday I felt good but wiped out from being sick and sleepless for 5 days. The nurse told me they were changing my IV mixture because my level had come up so quickly. Nothing was said about possible side effects or CPM. Saturday night I had horrible awake nightmares, was hearing things and barely slept. At 4:00 am I felt very unwell, had a headache, and had a dull tender pain on the right side of my neck at the base of my skull. They made no comment on that pain. Because I had ongoing undiagnosed vision and headache issues even after my sodium was restored, they did a CT scan but had no abnormal findings. I was discharged that day, Sunday.

    After being discharged, I started having new neurological symptoms — mild balance and random misstep issues, cognitive memory issues, and outright visions. I took sleeping pills for 3 nights. My sodium tested at 139 on Tuesday.

    Today is Saturday, one week from having the Hyponatremia corrected, and my post treatment symptoms have improved, but I am very concerned — can CPM continue to cause new issues or have I escaped serious damage once I’m over the initial onset??? Do I need to see a Neurologist and have an MRI?

    Thank you for all you’ve done to educate us here on your blog!

    Sue

    • Dear Sue,

      You need to go to an ER not associated (networked) with the hospital that treated you.
      You need to have someone else go with you (husband/friend). You do need to have a MRI. It is the only way to diagnose whether or not you have CPM or EPM. You need to be prepared to inform the doctors about CPM/EPM. They might not know anything about it because it is so rare.

      Most people develop the first symptoms of CPM/EPM within a week of the rapid correction of the sodium. However, your symptoms can continue to evolve for the next few months.

      They can become significant.

      However, there are treatments. Please search the treatment options before you go to any hospital or ER. Most doctors are unaware of treatments. They can completely reverse the injury according to research, but they have to be administered quickly. There are links to these articles and I recommend printing them out, so your doctors have a place to go when they research.

      Do not wait to get treatment! If the ER doctors do not want to admit you or perform the MRI, demand to speak with the neurologist on call. Hopefully, he will know what he’s doing and takes the injury seriously.

      Please feel free to contact me. I will try to help you as much as I can.

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