Epilepsy Talk
Seizure Free – A Hope or a Promise? | September 25, 2021
Is it a reality…a hope…or a promise?
Have you been there once for a visit? And then come back, to the land of falling down, shaking, quaking and blackouts.
We all know, the only thing that remains the same is change.
Everything is in a state of flux. Drugs, science, our bodies, our brains.
From that you can choose hopelessness. Or hope.
Maybe you’ve found the right drug cocktail, diet, VNS, and/or surgery.
Or are you still looking?
Do you see “possibility” turning into “probability?”
Wherever you are, it takes a load of courage. And perseverance. And optimism.
Waking every morning to the big “S” question. And then taking charge of your day. Or not.
I know someone who went through hell and back.
Fifty-three years of seizures.
Every drug that came down the way. Combos changed, doses played with.
He refused a VNS because the company was harassing and pressuring him. (Scary.)
And then the big break. Brain surgery.
It was botched. He went on, refusing to be a victim.
And then there was another doctor and another surgery.
This time it was a 100% success. He was seizure-free at 56 years old.
For me it’s been relatively cut and dry…
With Dilantin, I was a teen age zombie. My long hair fell out. I got galloping gum rot. And then it stopped working.
I don’t know if I had built up a tolerance or it was my changing teenage body.
Whatever, it was back to square one. The waltz of the drug cocktails.
Sometimes numb and dumb. (Is this better than epilepsy?)
And sometimes angry at the world. Falling, puking and a coma.
I went on Atkins. That helped. I started deep breathing exercises. I began meditating. Walking three miles a day.
And finally, I found “my magical med mix”. (Lamictal and Klonopin.)
After all those frogs I kissed, everything came together. Like a perfect puzzle.
My epilepsy is controlled.
I know I’m lucky. That’s why I write these articles. To share information, support, hopes and terrors.
Because compassion is what gets us through.
Even when the right “cure” comes along.
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Tags: angry, courage, drugs, Epilepsy, hope, hopelessness, information, perseverence, possibility, promise?, science, seizure-free, seizures, support, surgery, victim, VNS
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Reblogged this on Disablities & Mental Health Issues and commented:
A Hope!
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Comment by Kenneth — September 25, 2021 @ 11:17 AM
Thanks so much for sharing your story. After I survived status epilepticus twice. But thanks to a change in medication, a VNS and a positive attitude, I am more than four years seizure free. This is one of the happiest periods of my life because I feel vital.
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Comment by Mary Ellen Gambon — September 25, 2021 @ 1:56 PM
And as I know you, Mary Ellen you are not only vital, but strong, determined and relentless! 😄
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Comment by Phylis Feiner Johnson — September 25, 2021 @ 2:23 PM
Thanks so much! I had a great mentor!
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Comment by Mary Ellen Gambon — September 25, 2021 @ 2:27 PM
It just seems as if ALL who made their choices & BOOM !!! it all worked out for them, with no seizures, but never is said as to HOW they determined what was the RIGHT THING to do & how everything went along so smooth. For me there seems to be so much confusion over the past 2 to 5 years, when a VNS was the thing I was to have which I had ????’s about but it was over 70% chance of a seizure free life, Now in 2020 & 2021 it’s time for the RNS talk and it’s now 70% chance of a seizure free life, & a VNS now is under a 10% chance of a life with NO seizures, It sounds like a sudden DROP for a VNS to be any good for anyone, which maybe it cost LESS to do which makes all RNS devices more POPULAR to have because they will cost MORE to have done. Now there are a FEW AED’s I have never taken before, and I winder if I should try them all 1st ? That is less risk than maybe a brain surgeon hitting a blood vessel in the brain & maybe would create a blood clot later or a blood loss condition of Anemia & maybe a possible chance of having MORE seizures with a RNS added to my making of strange & different brain chemistry that my brain never had before. So I don’t know what the answer is in the medical world, BUT I know my real answer will come from ABOVE when I look for it from God, who it seems like most doctors never want to notice. .
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Comment by James D — September 25, 2021 @ 7:16 PM
Studies for the VNS showed:
About 1/3 of patients have had the number of their seizures reduced by half or more; less than 5% of patients become seizure free…
About 1/3 have shown benefit but have had their seizure frequency reduced by less than half…
About 1/3 have had no worthwhile benefit.
On the other hand, Trigeminal Nerve Stimulation is a nerve stimulation therapy that requires NO SURGERY and reduces seizures among those who are drug resistant by about 40 percent.
And then there’s the RNS. In a study, researchers found:
The 97 patients who were treated with the RNS system had 37.9 percent fewer seizures than before surgery.
Those 94 patients in the sham, or untreated group, had only 17.3 fewer seizures than before surgery.
When those in the sham group had the RNS system turned on, seizures were significantly reduced.
There was no difference between the two groups in the number of adverse events associated with the treatment.
And the effects of the treatment led to significant improvements in patients’ quality of life at the 1 and 2 year check-up.
There was also an improvement in some aspects of cognition.
The trial also demonstrated less serious adverse events than comparative surgical procedures. https://epilepsytalk.com/2020/06/19/responsive-neurostimulation-rns-shown-to-reduce-untreatable-seizures/ https://epilepsytalk.com/2020/06/18/tns-vs-vns-no-surgery/
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Comment by Phylis Feiner Johnson — September 26, 2021 @ 9:25 AM
It took about 20 years of trying different medications, 2 VNS implants and a change in diet for me. Every person has a different story and success rate. After having nearly died from status epilepticus twice, my medical team took my condition more seriously.
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Comment by Mary Ellen Gambon — September 26, 2021 @ 10:44 AM
Well done again, Phylis. Thank you
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Comment by Flower Roberts — September 26, 2021 @ 10:09 AM
I’ve seen a variety of hope and promise. When I was three and taken to our family doctor, my parents were told it’s epilepsy but just a minor form. Yeah, minor for about two years before the seizures got stronger.
Then I find out how we can control our seizures but lose control as well. I went all four years of high school with no seizures but after losing my sister and mother in my junior and senior year, I got depressed, angry, suicidal and back come the seizures.
20 years later I see control again but this time it’s my father who dies and it’s a repeat performance: depression, anger and suicide.
Then after a near fatal car accident, I decide I’m tired of this, find out I’m a candidate for a temporal lobectomy and have the surgery. I’m given these three percentages for the results of my surgery: 95% for better control of seizures, 85% that I’ll be in total control of seizures but have to stay on meds, 70% chance of total control and going off meds.
I right away got the hope I’m in that 95%. Then when they gave me the results of my first eeg and say there’s no sign of activity, I feel like I can make it to the 85%. Then they start telling me I can stop taking one of the three pills. Six months later I can stop taking another one. I have a feeling someday I’ll be a part of the 70% but I don’t wanna let go of that last med, my security blanket.
5 1/2 years after surgery, they tell me the last pill is causing Vitamin D problems. That’s when I wanted to try being part of that 70%. They told me to taper off for eight weeks. Finally on July 15, 2006, I took the last pill.
Epilepsy is like the stock market. You see a lot of ups and downs. You get excited about the ups and depressed about the downs. But if you pick the right stock at the right time, you’ll see a huge gain that could last the rest of your life. Every single day I’m thankful and I only wish I could share my gain with everyone here.
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Comment by Ed Lugge — September 26, 2021 @ 10:35 AM
Wonderful account of your story, Ed and just how strong emotions can rule our seizures.
The shock, the pain, the unexpected stress, all play havoc with our brain.
And you also depict the bravery of the surgical solution. Accepting it with reality and a positive
attitude..
You truly are an inspiration!
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Comment by Phylis Feiner Johnson — September 26, 2021 @ 11:03 AM
Thank you!! I always read the articles and posts that occur after. I am a parent, and as frustrating as it is for all of you, sometimes I, too, just want to curl up with my beautiful and courageous epileptic daughter and cry with frustration.
HOW, as parent, do I lobby for a cure? new research? new med.s? I am asking because I really want to know.
Thank you all for sharing!
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Comment by Anna — September 26, 2021 @ 12:34 PM
Anna, the first place you can start is with your local Epilepsy Foundation. https://www.epilepsy.com/affiliates
They can direct you to your local representatives, tell you what kind of political actions are taking place and how/where you can volunteer.
Being an advocate is invaluable and the Epilepsy Foundation could sure use people like you!
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Comment by Phylis Feiner Johnson — September 26, 2021 @ 6:20 PM
Anna, I was going to suggest what Phylis posted. It has meant so much to me to be a part of this group, as well as my local Epilepsy Foundation.
For example, just last night it was at a purely-for-fun pizza dinner before the start of a semiprofessional soccer game at an Epilepsy Foundation gathering that I noticed how many of the children who were there with their parents or parent who were developmentally challenged, though certainly not all. Some of these children stumbled while they walked and had confused expressions on their faces. It did not matter because I could see their parents having such compassion for them, as well as simply enjoying getting a free night out as a family. The Epilepsy Foundation was kind enough to pay for everything from parking, to pizza, and the game.
There were adults there with epilepsy too. They were driven by family members or by Uber. I was one of the very, very few adults with epilepsy who was actually able to drive myself. Sadly, some of the adults were there alone. (Though not for long.) They did, however, have the determination to get out.
But there is such a positive phenomenon in doing things in number. There were about 50 of us there, and it helped to break the loneliness cycle of epilepsy. Being with others who have a connection to epilepsy really does so much to factor into our healing, just as well as medication, surgery, etcetera.
Please check out your Epilepsy Foundation for volunteer possibilities; they can also give you opportunities to be involved with lawmakers to help with a funding increase for epilepsy. It is currently way underfunded.
Just don’t go through your struggle alone. We all have something we can give, and it helps to share in supporting one another.
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Comment by George Choyce — September 26, 2021 @ 8:40 PM
The timing of this subject couldn’t have been better. One thing I’ve learned since my surgery is how good you feel to stay involved with epilepsy and offer help and support in any way you can.
Yesterday I got a phone call from one of the people I talked to about surgery. I’ve talked to probably 15 or more people with epilepsy or the parents. She told me, “I made it. As of today, I’m five years seizure-free. You told me how you set your goal so I did, too, and here it is.” I told her she’s made it through the hardest part. Anything could happen from here and you’ll always be thankful for the first five years.
We all need to help ourselves but if you get the chance to help someone else and you see the positive change to their life, you get just as excited for them as you did for yourself.
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Comment by Ed Lugge — September 27, 2021 @ 12:00 PM
I think there nothing more joyous than helping someone and making a difference in their life.
Here’s to you, Ed!!!!
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Comment by Phylis Feiner Johnson — September 27, 2021 @ 12:53 PM
A New Life – From Epilepsy to Brain Surgery https://epilepsytalk.com/2021/02/26/a-new-life-from-epilepsy-to-brain-surgery/
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Comment by Phylis Feiner Johnson — September 27, 2021 @ 1:01 PM
Thank you for sharing. My 31 year old son use to have grand Mal seizures until age 13 when he was started on TRILEPTAL 300mg three times a day. He has not had a seizure for over 15 years but still taking the meds.
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Comment by juniorsplaceofhope — September 28, 2021 @ 4:41 PM
YAY! Congratulations on 15+ years of seizure freedom.
Meds are just for safety. Don’t let it get you down.
I’ve been seizure-free for eons (almost), but I still take meds to keep me on the straight and narrow.
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Comment by Phylis Feiner Johnson — September 28, 2021 @ 5:56 PM
For 6 decades no drugs were helping me until I started VIMPAT back in 2010 with the LAMICTAL I was on. I was 10 days away from being seizure free for 2 years, & then my neurologists asked me then if I wanted to go OFF the drugs & of course I said YES believing too that God was healing me since my surgery, and in OCT of 2012 I went off the drugs of the combo of LAMICTAL & VIMPAT. 2 weeks later the worst ever seizure happened to me & it was back on the drugs, but LAMICTAL had to go, as it was causing my INSOMNIA since being on it from year 2000. Since 2012 & that seizure it was for most of those years VIMPAT only & anywhere from 4 to 7 GRAND MALS from focal seizures a year, until NOV of 2021 I was able to be put on EXCOPRI along with VIMPAT, and they both are to be ”controlled substance drugs”. I am now over 8 months seizure free since but still have seizure symptoms to have happened in the 1st 4 months after I started taking the EXCOPRI, when I made sure by MAY of 2022 that I was NOT taking any drugs of XCOPRI like I am VIMPAT that has NO ALUMINUM IN THE DRUG, as only the VIMPAT 100MG & EXCOPRI 50MG tablets have 0MGS of ALUMINUM in the drugs. So WHAT DRUGS have you all taken that have ALUMINUM in them & you bet the house that ALL GENERIC NAMES WILL have ALUMINUM in those drugs. What I was talking about with VIMPAT & XCOPRI are all of the BRAND NAME and a lot of them now are becoming no longer SAFER TO TAKE than generic names are today until you do your own homework & listen to your brain 1st, because the brain never lies, when it is getting ATTACKED BY TOXINS & CHEMICALS from drug & food makers.
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Comment by James D — July 29, 2022 @ 5:06 PM