Epilepsy Talk

Seizures and Steroids | May 4, 2018

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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Resources:
http://doosesyndrome.org/treating-mae/steroid-therapy
http://www.nytimes.com/2012/06/05/health/research/new-epilepsy-tactic-fight-inflammation.html?_r=0
http://www.abta.org/brain-tumor-treatment/treatments/steroids.html
http://www.epi.ch/_files/Artikel_Epileptologie/Kurian_1_11.pdf
http://www.ima.org.il/FilesUpload/IMAJ/0/46/23065.pdf

 


22 Comments »

  1. Inflammation can be controlled other ways that an steroid or some other drug/s that eliminates pain. The brain itself can heal itself as many books & authors of those books by good specialist of the human brain has proven. So much they have proven that, so the FDA & many more STATE medical establishments tries to shut those people down & they never talk about what can really work like the herb turmeric, & other herbs including medical marijuana / CBD oils. What do the states & doctors make their money on ? Not TURMERIC, in fact FDA will soon try to make all herbs illegal to buy, much less use, by putting the good doctors & natural specialist out of business. BIG PHARMA will profit more than anyone who wants to use steroid therapy, and if they do not work too well, so what is their thoughts & attitude. So when I read articles like this I think of that U2 song,,, Still Haven’t Found What I’m Looking For. Another way to think about it, from drugs to everything else to stop seizures, heal or cure epilepsy,,DOES ANY OF THESE PEOPLE OR COMPANIES WHO SAYS THIS OR THAT WILL WORK TO STOP SEIZURES,, HAVE A SEIZURE CONDITION ”’of their own”’ where they can say,THESE THINGS HAVE STOPPED THEIR SEIZURES THEY HAD LIVED WITH ? What percentage of these makers of everything can say WE HAVE USED IT FOR OUR BRAIN, & NO MORE SEIZURES FOR LIFE WE HAVE HAD FROM IT. Remember the word MONEY, that matters to them more, not any of our quality of life with less or no seizures from ”their answers to our seizure conditions”. .

    Liked by 1 person

    Comment by C D — May 4, 2018 @ 7:14 PM

    • As usual C D — a point well made.

      P.S. BIG Pharma would like to regulate herbal supplements to get in on the action (and $$$).

      I know this from my 10 years writing about Health & Wellness.

      Like

      Comment by Phylis Feiner Johnson — May 4, 2018 @ 7:33 PM

  2. Hi Phylis,

    Another one of our interesting articles, which i can say from experience that Steroids can effect seizures.

    I was on steroids for like a month after my brain tumor surgery to remove a baseball size tumor from the left side of my brain. After stopping the steroids,, that’s when my seizures started, The seizures were small at first, but gradually increased activity as the months went by and the more Keppra the doctor told me to take. Finally the seizures started to be once a month.

    I agree with C D, the brain can heal itself, I’m somewhat of a proof, my last seizure activity was last September. Woo Hooooo!!!! That is the longest I’ve been without a seizure. Is my brain healing itself? I sure as hell hope so, since seizures can be a nightmare. I’ve reduced my stress level big time, i still take Gabapentin as my daily meds and have been retired for the last 2 yrs. So things are looking good for me.

    Cheers,
    Kornel

    Liked by 1 person

    Comment by Zolt — May 4, 2018 @ 7:47 PM

  3. Good for you Zolt! You rock!

    (No more nocturnal seizures?)

    Like

    Comment by Phylis Feiner Johnson — May 4, 2018 @ 7:53 PM

  4. Hiya, Zolt. I remember you from the Coping With Epilepsy site (I was AlohaBird there). Glad to hear your seizures are abating.

    Regarding steroids, the reason they “work” is because they get rid of inflammation but there are much better ways to do that without the side effects. The most important is to get rid of all the gluten in the diet. Even if you are not celiac, gluten is still causing inflammation.

    Liked by 1 person

    Comment by paleobird — May 5, 2018 @ 12:51 AM

  5. cortisol can damage a kid’s developing brain( eg van der Kolk, the Body Keeps the Score), I’ve had PTSD since I was 14, my hippocampus is scarred and shrunk, and it causes other things, like the catracts and clots I also have, even strong men on steroid pills can develop cataracts

    Liked by 1 person

    Comment by Gail — May 5, 2018 @ 2:43 AM

  6. Oh Gail, was the PTSD from steroids, along with the rest of the damage?

    I’m so sorry.

    Like

    Comment by Phylis Feiner Johnson — May 5, 2018 @ 9:48 AM

  7. “Another revelation from Paleo!!!!”

    Hardly a revelation, Phyllis. This is fairly mainstream science. If people are interested in researching it further, I would refer them to the website of Dr. David Perlmutter (an actual neurologist) and his fantastic book, “Grain Brain”.
    https://www.drperlmutter.com

    Like

    Comment by paleobird — May 5, 2018 @ 4:36 PM

  8. Hey Paleo, yes i remember you from the other site, i kind of step away from that site since it was turning more into a gaming parlor. 🙂 You want me to turn away from my beloved bread? Ugh, i can’t really do that, since I love it so much, i’ve learned how to make my own bread, using natural starter instead of yeast. Nothing like the smell of bread cooking in the house. I’ve retired to a 14 acre old walnut ranch and i’m trying to be as self sufficient as possible. Growing what i need and eventually raising farm animals, but haven’t yet since i’m still commuting to the bay area for few days at least once a month.

    Bread has been a staple of some societies for eons. But in some, like the Americas, that was not the case, they used corn for there bread. So I’m thinking in those cultures were bread was not known, they may have issues with it, especially if they eat it at the rate that the cultures that have used bread for eons.

    The things we love, make the quality of our lives, So this is one that i can’t go without. Nor can i go vegan, because a good steak every now and then is to delicious to pass up. 🙂 After my car crash from a grand mal seizure on the highway 8 yrs ago, I became a medical marijuana patient as well, that may also play into my seizure control. I also take Gabapentin, since i have to in order to drive. And I have Ativan, my emergency medicine i take when i have an aura, and can feel a seizure starting. I haven’t had a grand mal since my accident. Knock on wood.

    Hope you are doing well in Hawaii.

    Phylis, i never really had nocturnal seizures, mine were early in the mornings 1 hr after waking, thanks to Gabapentin. Before that, my seizures happened at all times of the day, normally when i could least afford one.

    Liked by 1 person

    Comment by Zolt — May 6, 2018 @ 1:49 PM

    • Paleo, is corn bread acceptable? Need your advice here.

      Zolt, I too have trouble giving up bread. That’s the bad news. But I am a vegetarian. (Due to protein processing problems.)

      But without meat, I certainly am guilty of craving carbs. Although I know that there are skillions that can replace gluten products.

      It’s a double bind for me. 😦

      Like

      Comment by Phylis Feiner Johnson — May 6, 2018 @ 2:05 PM

  9. I took a lot of steroids when I was younger. I grew up with Prednisone daily for years(3 years old until after my 6th grade year). I was often on a really high dose(60mg) to keep my kidneys from failing, as I had Nephrotic Syndrome through that time. I had a lot more seizures when I was younger, although I was seizure-free from high school until 2nd year of college(6 years controlled). I never went off seizure meds, but got off ALL steroids, aside from occasional Albuterol inhaler when I really needed it. Since I now take a whole food supplement in place of using my inhaler and using a natural breathing treatment, but will get a short period of steroids if I ABSOLUTELY need to, but that hasn’t been necessary with less medications. Also inhalers like Albuterol and Advair (which a doctor wanted to give me, but I refused), can contribute to heart problems and seizures.

    Like

    Comment by trekkie80sgirl — May 10, 2018 @ 6:19 PM

  10. Good for you, Trekkie!

    What kind of whole food supplement are you taking?

    Like

    Comment by Phylis Feiner Johnson — May 11, 2018 @ 7:15 AM

    • In place of an inhaler for asthma I take Standard Process Antronex and Emphaplex for breathing. I take lots of Calcium Lactate too, because I was on the steroids, which hurt my bones growing up, as well as some of the seizure meds that contribute to bone loss(my Levetiracetam Oral Solution I am currently on is included in that group).

      Like

      Comment by trekkie80sgirl — May 14, 2018 @ 1:51 AM

      • What other supplements do you take other than calcium lactate?

        Like

        Comment by Phylis Feiner Johnson — May 15, 2018 @ 10:39 AM

      • Most of mine are from Standard Process: Prolamine Iodine (instead of Synthroid-for hypothyroidism), Trace Minerals B-12, Folic Acid B-12, Cataplex B, Cataplex G(B & G are a B-Complex), Neuroplex, Neurotrophin PMG, Antronex, and Emphaplex (both Antronex and Emphaplex are for my breathing).
        I started taking Lavela (a clinically-studied lavender essential oil softgel at night for mild Anxiety. Because I needed something else for the day, I got Adrenal Health(made by Gaia Herbs) through Thrive Market and I drink some Golden Milk with Ashwagandha root in it from the same company as Adrenal Health. Ashwagandha root is an adaptogen so it helps balance stress. I found these natural things for stress, because I didn’t want to take Prozac and my Functional Medicine aunt started me out with a Lavela sample pack back in February when I was diagnosed with the mild Anxiety. I know the 2 prescriptions I take contribute to anxiety too and I am slowly weaning off Topiramate. I am still on my Oral Solution of Levetiracetam.I also use Modified Atkins Diet mixed with Paleo.

        Like

        Comment by trekkie80sgirl — May 31, 2018 @ 10:36 AM

      • Wow, you’re really proactive and seem like you have everything under control.

        Kudos to you. And thanks for the information.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — May 31, 2018 @ 11:08 AM

  11. Hi all, My son has been seizure free for a year but still has a TON of activity in his sleeping EEG. We have tried several AEDs to calm this activity further with no success. We tried prednisone before and it increased his seizure activity (I thought). Dr wants to try it again starting with 60mg/day and tappering down. I have been researching this and have never seen a tapper used in the research. He gained 20 pounds last time and the steroids are so hard on his body…..especially at such a high dose. I have talked with my son in length about trying keto first, but he is 12 and is fighting me on it. Any thoughts on the steroid treatment would be appreciated. I haven’t started it yet, hoping to get some more answers. Thank you!! Cindy

    Like

    Comment by Cindy Wood — July 26, 2018 @ 10:53 AM


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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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