Epilepsy Talk

Seizures and Steroids – A Hidden Solution  | August 27, 2022

I always thought that steroids were the kind used by athletes and bodybuilders to pump up their performance. Yes, they do exist and, yes they are quite dangerous, but those aren’t the kind of steroids this article is about.

In fact, anyone who has epilepsy should NOT take anabolic steroids because they may change the level of anti-epileptic drugs (AEDs) in the blood and may make seizures more likely.

The steroids I’m talking about are naturally occurring hormones. Common oral prednisolone or less common/higher risk ACTH — which have a place in the management of severe epilepsies.

Steroid therapy for epilepsy management is considered unconventional and certainly not a decision to be made lightly because of the serious risks and undesirable but common side-effects.

A person can undergo steroid therapy for only a limited period of time; he/she cannot remain on steroids forever.

Unless the epilepsy remits within the course of treatment, steroid therapy will need to be followed with an alternative AED, once the steroids are stopped.

How and why steroids work to control epilepsy is poorly understood.

Specialists assume it has a useful anti-inflammatory action, but it is probable that the release of particular hormones (stress hormones) and their effect on the brain’s cortisol receptors and stimulation of the adrenal glands is thought to be beneficial too.

One thing is known, steroids can seem like a wonder drug when other treatments have failed.

“Anti-inflammatory therapies could at least supplement, and perhaps replace, anticonvulsants,” said Dr. Jacqueline French, a neurologist at the N.Y.U. Comprehensive Epilepsy Center who is leading the new trial.

Even though it can be a wonder drug for controlling seizures, some treating doctors will still refuse to prescribe steroids, because they believe the side-effects are potentially too harmful compared to other AEDs.

Yet the treatment is gaining popularity because doctors are constantly learning safer methods to administer the drug.

Also, doctors are becoming more confident in prescribing steroids because studies on their use in chronic childhood epilepsies including Lennox-Gastaut syndrome, Landau-Kleffner syndrome, and MAE have shown that long-term steroid therapy is actually safer than previously perceived.

The steroids themselves come from two different families: ACTH (Andrenocorticotrophic Hormone) and oral steroids such as prednisone or prednisolone.

Andrenocorticotrophic Hormone –ACTH

ACTH is a first-line treatment for infantile spasms and can be used in other childhood epilepsies including Lennox-Gastaut syndrome, Landau-Kleffner syndrome, and MAE.

It’s a peptide hormone, produced in the anterior pituitary gland that is administered by injection.

Unfortunately, this therapy while thought of as a “magic bullet” by some, has caused fatalities and serious complications in the past.

So it’s regarded as a high-risk treatment and used only when it is judged that the benefits (seizure control) outweigh the risks.

Oral Steroids (prednisone or prednisolone)

Hydrocortisones such as Prednisilone and Prednisone are a synthetic type of medicine known as corticosteroids.  (Corticosteroids are hormones produced naturally by the adrenal glands located adjacent to the kidneys which have many important functions on every organ system.)

These synthetic corticosteroids mimic the action of cortisol (hydrocortisone), the naturally occurring corticosteroid.

And because of the high risks associated with ACTH, specialists often opt for prednisone or prednisolone, because they’re considered to be much safer.

Specialists have had decades of experience with this type of medicine — especially in the management of chronic asthma in pediatric patients, and they’ve learned methods of oral administration which can minimize side-effects significantly.

The distinction between prednisone and prednisolone is that prednisone is inactive in the body and, in order to be effective, it first must be converted to prednisolone by enzymes in the liver.

Some specialists favor the use of prednisolone because it can be just as effective as prednisone but may have fewer or less side-effects.

Potential Side-Effects

Because steroids are hormones, patients who use them for long periods of time must be carefully monitored.

The most common side-effects are: weight gain, thinning skin, upset stomach, muscle weakness in the thighs, shoulders, and neck; “masking” or hiding a fever, mood swings, insomnia, pneumonia, and increased blood sugar levels (especially in patients with diabetes).

Steroids can also interact with some seizure medications, either raising or lowering the seizure medicine levels in the blood, which can alter their effectiveness. Your doctor can explain other side- effects that may occur with steroid use.

Replacing anticonvulsants is not merely an end in itself. Although they give many people with epilepsy a better quality of life, they do not affect the course of the disease, only its symptoms.

Researchers hope that anti-inflammatories may help understand epilepsy’s underlying causes.

“Giving a medication that could treat the epilepsy, as opposed to treating the seizure, would be absolutely novel,” Dr. French said.

“Like any new field, there’s a lot of enthusiasm and almost a bit of religion involved,” said Dr. Tallie Z. Baram, an epilepsy expert at the University of California, Irvine.

“The challenge for the next few years is to find out the limitations, the boundaries, the real mechanisms.”

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  1. Reblogged this on Disablities & Mental Health Issues.


    Comment by Kenneth — August 27, 2022 @ 8:51 AM

  2. FYI steroid asthma sprays and/or nose sprays are NOT The same as taking steroid pills.


    Liked by 2 people

    Comment by Susan Vander Veer — August 27, 2022 @ 10:10 AM

  3. After my brain tumor removal, seizures didn’t start till after i stopped taking the steroid medication. That was like a month after, when i was totally weened off of it.

    Liked by 1 person

    Comment by Zolt — August 27, 2022 @ 1:27 PM

  4. It was close to 18 months ago, when my neurologists & his clinical study assistant thought I could be on a prednisone that raised the potassium levels BUT they could never know how much it would be raised. SO I asked if too much PREDNISONE would make my brain activity with taking VIMPAT more hyper or more relaxed as my seizures could increase or decrease, which THEY DID NOT KNOW, and it would effect my VIMPAT LEVEL. So in the meantime my VIMPAT before thinking of this was lowered from 250MGS a day down to 200MGS, and the people who were conducting the study INSTANTLY SAYS NO for me to be a person of this study with the MRNA drug / Prednisone, as I KNOW THEY KNEW how ”’my seizure activity would had changed”’ which was THIS CLOSE to saying YES, so a few months later I was given the chance to try the study drug XCOPRI & it has been helping me greatly by at least a 95% seizure activity reduction & NO seizures since 11-09-21. So I am glad I was rejected from that study assistant, & corporate trial by BIG PHARMA, now what I have been learning of what all MRNA drugs have been doing to people since the MRNA’s have been killing people with all shots or making their lives a total living hell since taking MRNA drugs.

    Liked by 1 person

    Comment by James D — August 27, 2022 @ 7:16 PM

  5. one year was dealing with bad headaches couldnt open my R eye , the neruo asst , did an ANA testing to check autoimmune testing , she called that evening told me to go to the hospital ASAP , the testing came back pos, for Lupus gave me steroid shot via drip bag , within 90 mins , was going through diabetic issues sugar level over 500,.. to this day , very leary on my headaches , even today

    Liked by 1 person

    Comment by Cathy Flowers — August 28, 2022 @ 11:33 AM

  6. Do you know what triggered your headache?
    Was it aura induced or the result of a seizure?
    Where did the lupus come in and what was the outcome?
    Whatever it was, it sure sounds like a scary disaster.


    Comment by Phylis Feiner Johnson — August 28, 2022 @ 11:56 AM

  7. If I could say it long time ago my family doctor who I saw more than my neurologist refused to put me on steroids for my Epilepsy.
    Especially since I worked out, exercised, choreographed (some what), danced and walked a lot!!!!
    He and I talked about my diet, and my sleeping pattern.
    Since I was not near illicit drug use for the longest time my Epileptic seizures were never an issue. Yet when I relocated to a place where it was known to everyone for violence, intimidation and illicit drug use but the Rape crisis center that came to look at the building with me a year before..
    Both my Fur baby feline and I became ill. He became ill within the first year and was put on prescription food from his veternarian, then dehydrated..
    I was taken to the hospital a lot. My AEDS were tripled to where I started with taking them when I was just diagnosed with Epilepsy after high school!
    My doctor added vitamins and was glad to know that I was still drinking Pure Protein Ensure and continued to recommend it to me!

    People who found out by “how the hell… What happened?”
    Just stayed the same as before the Epileptic seizure and made sure that I knew they were not going anywhere to become ignorant… When I lived near a 24/7 grocery store I loved because it was helpful for first responders that needed to do their groceries, anyway if I was waiting to get my hair done, the main person would suggest that I get some fruits or a fruit parfait to get extra “brain food.”

    As I’ve been cyber stalked and she or they think it’s funny and want it to be funnier because they want me to commit suicide and or be branded like a wild horse.

    I posted originally from the beginning because of my trials and tribulations of Epilepsy!
    These people even forced my Fur baby feline away from me in 2018, I couldn’t get him back!
    I found my fur baby when he was outside, cold and a kitten!

    I’ve been told to stay away from Steroids!
    As I been working out clean my entire life can’t afford to pay for costs of destroying my body now… Even though I feel as if I already am the past 4 years!


    Comment by Tabitha — August 28, 2022 @ 4:45 PM

  8. This is interesting. I wish they would work faster and come up with more definite solutions. It seems there is so much talk of this or that working better than AEDs. but then I see nothing concrete with the Drs. that treat E. It is great they are making progress with treatment options but so frustrating that they don’t apply them soon enough.

    Liked by 1 person

    Comment by Tami — August 29, 2022 @ 5:04 PM

  9. But there are some neat things on the horizon, Tami.

    Take a look at: Treating Seizures — 7 Amazing New Breakthroughs https://epilepsytalk.com/2022/03/11/treating-seizures-7-amazing-new-breakthroughs/


    Comment by Phylis Feiner Johnson — August 29, 2022 @ 5:37 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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