I’m Taking This Medication Side Effect With a Grain of Salt

A columnist relates his experiences with oxcarbazepine and low sodium levels

John Connor avatar

by John Connor |

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The call from my urologist’s office came far later than I was expecting, in regards to my long-term chronic urinary tract infection (UTI). The call came in on my home phone, but luckily, someone else was around to answer it. I long ago gave up trying to answer that phone myself.

I’ll never again beat the old-fashioned answering machine before it kicks in. Actually, it’s not that old, as they’re all digital these days. Yup, I’d still been using the cassette one until it eventually died.

I’m slow because I usually have to disengage the powering of my wheelchair, which I always forget until it slowly registers that it’s the reason I’m not moving backward — like an assimilated Borg in the “Star Trek” franchise that has to leave its charging portal. (Yes, I realize this is an extreme exaggeration, but let me have my fun.)

First, my sitting angle has to be adjusted. Then I gingerly go backward from my desk — there are no wing mirrors, remember. Then I gently turn and exit the bedroom, and the phone is right there in the hall.

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Why hadn’t the doctor called my mobi? Well, he had, except I had the ring tone volume turned down.

Getting a handle on sodium levels

The first thing he told me was that I had low sodium levels again. While the rest of us lot in the West are usually fighting high sodium levels, I have the joy of fighting the opposite problem. The trouble is that I don’t actually like salty foods, and I’ve also put myself on a diet.

It transpires that one of the drugs — oxcarbazepine — that I now take to control trigeminal neuralgia, which causes severe facial pain, knocks my sodium levels down. None of my doctors have advised me what I can do about it. I have a feeling they’re not allowed to suggest the obvious, which is to ingest more salt.

It took an exhausting eight hours in the emergency room at my local hospital for one of the on-duty doctors to surmise this. I had to go there because my own general practitioner insisted. Fortunately, my sodium level was above 115, so I didn’t have to be admitted to the hospital.

Back to my urology consultation. As I listened to the complex explanations about my urine and blood levels, I realized I was in a fog. Not a multiple sclerosis (MS) fog, but a fog due to low salt. Usually, I’d ask questions about what a high white blood cell count actually meant. Instead, at that moment, it all seemed too complex to care.

When I put the phone down, a voice told me I needed salt badly. Luckily, there was a bag of cheap, salty peanuts in the house. I started eating a few. As I did, I felt my brain actually engaging. It was like the process one goes through when you wake up. It was very weird.

In the past, I’d have had no choice but to munch through the entire 200-gram bag in one go. Instead, my new control over eating has meant that said bag actually lasted eight days! Somehow, I’ve managed to break the reward cycle that meant I’d become partly insatiable. Every morning, just a few of those overly salted peanuts have banged my salt levels right up and cleared the ol’ brain.

Sorry, this has been a one-note column. S’pose it’s just another variable I have to balance. And balance ain’t exactly the forte of MS. No wonder I keep falling off the high wire and plunging into the safety net below.

Now, it’s another trip to my local hospital for a blood test. Better nibble me nuts first!

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.


Leanne Broughton avatar

Leanne Broughton

I have been on Oxcarbazepine for my TN. My last bloodwork showed my sodium at 130, down. It left my GP and I perplexed until I read the drug info sheet. And that was a side effect. I have also been on a healthy diet which just happens to have little salt. I will have to conciously use and eat more things with salt. Potatoe crisps were a favourite but gave them up a few years ago when I went on a clean diet. More bloodwork this month so we will see. Onto the TN, my neuro's college is doing botox injections around the TN site causing the pain. She says it is an accumulative effect. I have just had my 4th treatment and noticed a difference after the 3rd. It is every 3 months. I still have occasional stabs of pain but 75% less than the severe chronic pain I had. Oxcarbazepine also helped greatly, I am allergic to Carbazepine.

John Connor avatar

John Connor

Salty popcorn! Roughage & rel low cal. JC x



thank you for some great news to watch for ...i don't take that med but still great thing to watch for ...for i passed out a couple of weeks ago and so far no tests have shown why ...so could be some thing to look into....have a wonderful and great day ....ha maybe you could get the phone company to install a phone in your bedroom so it could be on your desk so you could answer it ....have a great fun day ....love and much happiness...

John Connor avatar

John Connor

Had one but it got shafted somehow. Not going to shell out £50 [$60-65 min] on new connection.


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