What is YOUR story?

Epilepsy Talk

What is YOUR story? | August 7, 2020

When did you find out that you had epilepsy?

How?

What did you do after being diagnosed?

How do you cope with it now?

For me, it was at age 12.

And although I was diagnosed by the Head Neurologist at NYU, no one (except my father) accepted it.

My step-father was a surgeon. (“You have uneven brain waves.”)

My step-mother was a shrink. (“WHAT’S THE MATTER WITH YOU?”)

And I was a pariah.

Of course it didn’t get any better…

I was a zombie on Dilantin.

(The only med other than Phenobarbital that was available then.)

I almost drowned in the shower, continued to pass out, walk into walls, and even broke my nose.

(My mother said: “What a clutz!”)

But adolescence stinks, no matter what shape you’re in.

(“Those were the best days of my life.” You’ve got to be kidding!)

It was awful.

Trying to date. (What would happen if someone kissed me?)

Being ignored. (People were afraid.)

Being shunned. (Really, epilepsy is not catching!)

Epilepsy became my “dirty little secret”.

Until I got a little older, a little wiser and became more comfortable in my own skin.

And although my epilepsy didn’t go away, my attitude changed.

After all, no one had any expectations of me, so how could I fail?

I couldn’t fail, except in my OWN eyes.

Ok. Yes. I got angry.

Which was a good thing.

I figured, “I’ll show them.”

And I did.

I sent myself to college and graduated Magna Cum Laude.

Even though no one would pay my way, because they thought it (I) wasn’t worth it.

Next came waitressing.

After all, a girl’s got to eat.

You can imagine what a disaster that was.

So, it was on to men’s retail clothing.

Until I keeled over on the suit rack.

And there were a bunch of lousy jobs after that.

But my dream was to write.

So after 124 answers to blind ads in the newspaper, I got a call for an interview.

I couldn’t afford the phone call.

I called collect.

And guess what?

They came to Boston to interview me!

Then it was off to Pennsylvania for a “trial run”.

(They paid for my airfare, motel and food. I had NO money.)

And I fell in love. BIG time.

To the kindest, most caring, accepting, positive, person possible.

Someone who believed in me!

I’ve been writing for 35+ years.

I’ve been married for 40 years.

(Which, in my family, is an all-time record.)

And yes, I showed them all.

But most of all, I showed myself that I could do it.

Am I proud? You bet!

Now tell us about yourself…

To subscribe to Epilepsy Talk, simply go to the bottom box of the right column, enter your email address and click on “Follow!”

Posted in Epilepsy
Tags: anger, believe, diagnosed, Dilantin, Epilepsy, fail, ignorance, pariah, Phenobarbital, secret, story, succeed

45 Comments »

My history—herstory. Ironically I just turned 53 on 8/5 and it has been 13 yrs since I was diagnosed. W/O telling the name of the drug to stop smoking I took 13 yrs ago was the cause of a tremendous seizure that caused cardiac arrest and damaged my brain to the point of now having a 5th grade comprehension, no short term memory due to the destruction of my hippocampus. I now am a very fortunate woman with the neuropace installed 4 yrs ago. I have had no seizures since and actually I am going later to get my Drivers License renewed. My real suffering now is all the meds I think 7 rx their interactions and cost. There are good days and bad days. Again Ironically I just had my bi-annual visit with the head of the neurology dept of the Cleveland Clinic last week. I am so fortunate to live in Akron. Dr. Nair was able to see the recorded brain activity of my neuropace –it has all the past but with all this ridiculous amount of stress I am having more seizure activity that the neuropace has stopped. Last week I found out my mother who has Alzheimers now who paid for all my health care costs—3 brain surgeries, meds that were over 2000/mos —had to change Memory Care Nursing Homes because of sexual abuse to the residence. My sister sent me the article showing the case trial etc. The day I read that I had 7 seizures—It was like when we saw the graph of the seizure activity being normal most days none—menopause 2-3 every once in a while was so high and out of place wowowowow. My doc freaked too. He knew mom well. Having her lose her memory and losing identity has been way too much for me. I am seriously told to rest and relax. I am not to get overwhelmed—going to the grocery store and seeing all the products/ colors noise is a very rare occurrence. I have several shrinkypoos on call and one said well Laura with this pandemic your used to this way of life. I am handling this better than others. From the law suit for the med I recv’d $10,000. After lawyer and taxes a check for $6,400. Is all I got. Stress, menopause has made me really out of it. I am always anxious. I absolutely should not be alive my first seizure was when I was in my drive way after a 45 min drive home from work and an aura occurred I couldn’t figure out how to place the car in park. I woke up in the hospital because my neighbor across the street saw my car roll back out of the drive way to the street. I was a very successful Art Gallery director art consultant sales trainer won trips from other co.s earlier in my career selling Mercedes and fine jewelry. I had just married the love of my life decided to try to have a baby never had one he was going to stay home even mom would pay for adoption if needed—STOP SMOKING and play in bed. You heard the rest. We are still married. He is a wonderful caregiver but I certainly am not the person he married. It sucks. Laura Hood

Sent from Mail for Windows 10

LikeLiked by 2 people

Comment by Michael Hood — August 7, 2020 @ 10:44 AM

Reply
- I don’t know what you took to stop smoking, but I took Wellbutrin and it was a mess.
  
  Two heart attacks (in the ER), an induced coma, then five more days in the hospital.
  
  Eventually, my cognitive abilities returned (my husband is convinced that my brain rebooted) and I began Epilepsy Talk with the aim of helping others.
  
  As far as stress. You know, it’s the #1 trigger.
  
  Stress can increase cortisol, known as “the stress hormone” because cortisol is secreted in higher levels during the body’s “fight or flight” response to stress.
  
  And, it’s responsible for several stress-related changes in the body which also may influence seizure activity.
  
  Negative emotions related to stress, such as anger, worry or fright, may also cause seizures. This happens because the limbic system, the portion of the brain that regulates emotion, is one of the most common places for seizures to begin.
  
  And yes, hormones are no fun either.
  
  Research has shown that seizure discharges in certain brain areas can alter the output of hormones from the brain, and sex hormones can influence how the brain works.
  
  For example, estrogen has been shown to increase seizure activity, while progesterone can have anti-seizure effects.
  
  Seizures that are most likely to be affected by hormonal changes are partial seizures that involve the temporal or frontal lobes of the brain.
  
  However, hormonal associations may also be seen with generalized seizures.
  
  The temporal and frontal areas of the brain are closely connected to the hypothalamus and pituitary glands of the brain, which control the release of hormones.
  
  And side effects are truly a crap shot. Which is worse, the seizures or the side effects? I also take a mound of meds, but happily it hasn’t made me “dumb” or affected my cognitive abilities. I guess I’m one of the lucky ones.
  
  As far as jobs, I’m sure that put you in a tail spin and didn’t help your feelings of self worth. But to have a loving, caring husband, is the greatest gift of all.
  
  Don’t sell yourself short. Believe in yourself and know that you’re worthy of love.
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — August 7, 2020 @ 11:56 AM
  
  Reply
  - I take issue with the term “negative emotions” for fear and fright. They are often appropriate and useful, even crucial for survival. Worry – not so much.
    
    LikeLiked by 1 person
    
    Comment by HoDo — August 7, 2020 @ 3:09 PM
Yikes, here it is end of term and you want a 25-page paper by Monday! Will see what can be done. Looking forward to watching others take the floor, to hearing you all speak.

LikeLiked by 2 people

Comment by HoDo — August 7, 2020 @ 11:08 AM

Reply
- Can you do a “Reader’s Digest” version? I know there are no “”Cliff Notes”! 🙂
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — August 7, 2020 @ 11:58 AM
  
  Reply
  - Hmm – haiku?
    Since Readers’ Digest is a family magazine, probably not.
    
    LikeLike
    
    Comment by HoDo — August 7, 2020 @ 3:11 PM
  - That would be a pretty long haiku, wouldn’t it?
    
    LikeLike
    
    Comment by Phylis Feiner Johnson — August 7, 2020 @ 4:16 PM
  - Different. Bad.
    Neglect. Trauma.
    Nerdly job.
    Advanced degree.
    Symptoms. Diagnosis.
    Dubious meds.
    More nerdly jobs.
    Balancing act.
    Giving back.
    
    A haiku and a half.
    
    LikeLiked by 2 people
    
    Comment by HoDo — August 7, 2020 @ 5:44 PM
  - Well that just about covers all bases.
    
    Artfully!
    
    LikeLike
    
    Comment by Phylis Feiner Johnson — August 7, 2020 @ 6:30 PM
At age 3, I was getting scared for no reason. The first thing I would do is find my mom or anyone else who was nearby and ask them to hold me until I felt OK again. Eventually, my parents decided to take me to our family doctor and he told them, “It could be epilepsy but it’s just a minor form.” Minor? From that point forward, it was getting stronger. I didn’t just get scared. I blacked out.

I was finally taken to neurologists at Barnes Children’s Hospital in St. Louis where I was finally given the tests, the pills, everything I really needed. They couldn’t tell me how it started but we felt it was one of three things: I had a birth weight of 12 lbs. 9 oz., I was pushed down a flight of steps by my brother or it was from the 105 fever I had.

Things got better for a while. I made it through all of high school without a seizure. But then came two reasons I would put a stop to my progress: My sister who was like a mother to me died just 30 minutes after I saw her and talked to her at the hospital. She was 31. 15 months later my mom died. The two women who were my rock were gone. I got mad, depressed, everything you shouldn’t do if you want to stay seizure-free. I even thought about suicide but what saved me was how my mom explained to me earlier what would happen to me if I ever did it. Then back came the seizures.

While I was in need of help once again, I was too old to go to Barnes and the local neurologist was just no help. Then a lady from work brought me an article from the newspaper on an epileptologist. I called, asked for help and they set me up for tests. He eventually got me started on another long run of seizure-free days. But then my dad died and once again I couldn’t handle it and back come the seizures again.

One night I got a call from my other-in-law. She asked me if I was watching Discovery Life Channel. There was a woman complaining about everything I didn’t like about epilepsy and she’s decided to have surgery. I watched the whole surgery and by then, my wife knew what was coming next. I wanted her to agree with me that I needed that surgery. I also needed to convince my epileptologist that I wasn’t getting enough control of my seizures to feel safe the rest of my life.

I had the testing done where I saw three of the worst seizures I ever had, found I was a candidate for surgery because everything was coming from the left temporal lobe and got a date for surgery – my sister’s birthday. The date got moved back but I want to remember my sister for all the right reasons. I had the surgery, got out of ICU in just 12 hours and was being asked if I wanted to go home after just three days. In the meantime, I finally learn what caused my seizures – my 105 fever.

Six months later I had an eeg which showed no sign of seizures. I went off the first of three meds, Trileptol. Six months later I went off another one, Keppra. I had been taking Dilantin for 35 years so it was me who said I want to keep taking it to be safe. 5 1/2 years later when I learned Dilantin was causing Vitamin D problems, I finally let go of my last pill.

14 years I’ve been off all meds. December 11 marks 20 seizure-free years since my surgery. This is why I keep calling it A Second Chance At Life.

LikeLiked by 2 people

Comment by Ed Lugge — August 7, 2020 @ 12:10 PM

Reply
- Oh Ed, losing the rocks in your life must have been devastating. Not to mention, stressful. But I think it’s the love you had for them that carried you through. Even if it was a conflict.
  
  The mystery of the origin of your seizures must have been scary, too. How can you “fix” something, when you don’t know its origin?
  
  But happily, you found an ace epileptologist, and you were brave enough to venture (and even insist) on the unknown. The consequences are wonderful. And I congratulate you on your perseverance and courage.
  
  You are an inspiration to us all.
  
  LikeLiked by 1 person
  
  Comment by Phylis Feiner Johnson — August 7, 2020 @ 12:25 PM
  
  Reply
  - Thank you because that’s what I want to be…an inspiration!
    
    LikeLiked by 1 person
    
    Comment by Ed Lugge — August 7, 2020 @ 1:41 PM
  - One more thing and I feel it’s important. Two things you must possess to control yourself as you prepare for surgery are confidence and a sense of humor. People praying for me provided the confidence. When I say sense of humor, here it is.
    
    I was 42 and had a mother, father, sister and brother pass away before the surgery. Our family game was pinochle and everyone wanted to play. I could see my mom and sister taking on the two men and none of them were giving up their seat. I felt every one of them was looking at me telling me they don’t have a place for me so I’m staying right where I’m at. And I listened. I’m still here.
    
    LikeLiked by 2 people
    
    Comment by Ed Lugge — August 7, 2020 @ 2:33 PM
  - I agree with the sense of humor. That and curiosity (“May I see the scalpel?”) got me through the scariest surgery.
    
    LikeLiked by 1 person
    
    Comment by HoDo — August 7, 2020 @ 3:16 PM
Well, my story started later on in my life, I never suffered seizures as a child I didn’t have my first seizure until I was in my thirties which was a result from me having come down with viral meningitis which caused me to have a massive seizure and put me in the hospital for a week. This was back in the late 1980s. The seizure was so intense that it temporarily caused my kidneys to start to fail, luckily they started to work again, the paramedics said that when they came to attend to me they witnessed me running around just shouting, the one paramedic stated he had never seen anything like that before, except with serious head injuries, the two paramedics had to tackle me down to the ground in order to place me in the ambulance and to attend to me. That tells you just how intense that seizure was, and I can tell you when I finally came out of my seizure I was so exhausted! It felt like I had run a marathon my entire body was so sore, and every muscle in my body hurt, I had never felt anything like that before, or even to this day. But, here is the strange thing, I didn’t have another seizure until about thirteen years later when all of a sudden they started again, and nobody could tell me why back then, and even today not one doctor can explain it, and I wasn’t taking any medication during the time of me not having any seizures. I started taking medication once the seizures started up again, that was around 2001 I have been on them since then. I was on Dilantin for many years but switched to Keppra recently, I’m feeling a little bit better on it, but I still have some terrible side-effects, Dilantin was worse! I don’t have very many seizures now, the last one I had was in my sleep that was several months ago. I inquired to my current doctor about eventually getting off of the medication, but he advised against it right now because I had that seizure a couple of months ago. For me, it’s so frustrating because I don’t have very many seizures I wish someone could tell me why? I hardly ever have them, and what is causing them? I do have to say before I end this story of my life with epilepsy that the doctor’s that truly helped me through this was the natural doctors that worked with me back in 2001 when my seizures resurfaced, the approach that they took, the therapies that they used which were all natural was incredible! I had no seizures the entire time that I saw them, they used natural treatments, changing the way that I ate, they found I had a lot of food allergies and using vitamin therapy they found after doing blood work on me that I was lacking a lot of nutrients. With all their work, I felt better then I had felt in years! I still try to see them as much as possible today. The one thing the natural doctor’s told me back then was they suspect that my Seizures may be caused by some kind of food allergy, but it was never conclusive. To this day I eat exactly as they outlined for me and try to still have some of the same therapies that they gave me back then, the main problem is they don’t take insurance and it can be very expensive. If it wasn’t for the medication I would be feeling much better then I do now. That’s the dilemma that I find myself in today if I could just get off the medication I would be feeling much, much better. So the fight continues! That’s my story, living with epilepsy is never easy.

LikeLiked by 2 people

Comment by Kevin — August 7, 2020 @ 7:51 PM

Reply
- What a wild ride you’ve been on. I don’t envy you and am so very sorry.
  
  As far as food allergies go, have you ever considered one of the anti epilepsy diets?
  
  Three Anti-Seizure Diets That Could Change Your Life… https://epilepsytalk.com/2018/02/15/three-anti-seizure-diets-that-could-change-your-life/
  
  The source of your seizures must be an unending frustration. How to treat it, when you don’t know the source?
  
  As far as the naturopathic doctors go, good for you. Not many have the faith or courage to go outside of the box.
  
  Obviously, you are a person of perseverance, who is not afraid of alternatives. May they serve you well.
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — August 7, 2020 @ 8:46 PM
  
  Reply
By the way, Phylis, I commend you on finishing college. I just went on my math ability.

LikeLiked by 1 person

Comment by Ed Lugge — August 8, 2020 @ 2:24 PM

Reply
- And I survived on my writing ability. (What a surprise!)
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — August 8, 2020 @ 2:34 PM
  
  Reply
I’ve had epilepsy for 10yrs, developed from TBI in rollover car accident.. used up my retirement for meds, medical bills and er trips, then sat at home getting depressed and having seizures.. it’s not fun suicide was the answer until Epilepsy Foundation saved my life from myself and majority of seizures, now I’m very grateful to the professionals, doctors like Dr. Hartshorn and companies that donated the VNS device to save my life BUT it didn’t stop me from thoughts ending my I’d never really had before epilepsy, I call it “Seizures and a .45” like a country song.. I don’t want to show those people I was a waste of their resources and also showing everyone my weaknesses.. I’m here today is all I can say…

LikeLike

Comment by Useless Ness — August 8, 2020 @ 2:40 PM

Reply
I found out that I had adult epilepsy when I became an adult—I had my first seizures at the age of 18. Actually, I found out that I had it, but I didn’t know what “it” was. And neither did the doctors. So when they ran tests and came back saying, “there’s nothing wrong with you,” I said “okay, whatever,” and left home to enroll in college. I had fifteen auras or seizures in the next four years at school, but I didn’t know what they were—I called them “spells.” I graduated from college and decided to pursue some more investigation of my condition, but EEGs and MRIs all said I was fine. “Okay, whatever,” I said, and moved to another state to start a graduate degree. This time I had about fifteen “spells” while pursuing a two-year degree, but I graduated and immediately started working. Within the next year my “spells” got more out of hand, and I eventually called up the doctor’s office and said “please—let me come in and talk to anybody!” I was assigned to one of their best doctors, but he listened to my description and said that maybe he should send me to his wife—a psychologist… My “okay, whatever,” was more tentative this time. Things didn’t get any better, so the next year I demanded more testing. Nine years after my “spells” began, I finally was told that they were seizures, was diagnosed with epilepsy, and was put on meds which didn’t provide much protection. It took about twenty years before I made it to an epileptologist. This time I said, “okay, whatever it takes,” and agreed to surgery. I’ve been almost entirely seizure-free for the eight years since.

LikeLiked by 1 person

Comment by Deb — August 8, 2020 @ 10:29 PM

Reply
- I had kinda the same thing happen with trying to find out what “it” was!!! Accident in 2004 left me with “it” and no one knew what it was..so I went to psychologist and regular doctors before I found the doctor that understood epilepsy. Took me way less time to get diagnosed as epileptic… However because of my job I did not let anyone outside of my family know of my condition.. Eventually things caught up…
  
  LikeLiked by 1 person
  
  Comment by Useless Ness — August 8, 2020 @ 11:01 PM
  
  Reply
- Wow Deb, Despite all those seizures, you made it through to a graduate degree, with all those seizures! Not many of us could claim that distinction.
  
  As for EEGs; Many of us have heard: Your EEG is normal. You’re fine…(“It’s all in your head?”)
  
  I know of people who have had 5 EEGs, only to be properly diagnosed when they finally had Video EEG Monitoring.
  
  An abnormal EEG does not diagnose epilepsy nor does a normal EEG reading exclude it. (I guess you found this out the hard way.)
  
  But your perseverance is astounding. Especially after being diagnosed with “Pseudo Seizures”.
  
  Good for you for sticking to your mission. And yes. It finally paid off. But not without considerable sacrifice on your part.
  
  And congratulations on finally being seizure free!
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — August 9, 2020 @ 10:03 AM
  
  Reply
  - For some of us, an EEG never showed anything and never will. It takes an MRI and sometimes a fMRI. Unless you know, there’s the risk of some lack wit doctor putting you down as a drama queen.
    
    LikeLiked by 1 person
    
    Comment by Ho — August 9, 2020 @ 10:37 AM
  - I became ill, really seriously ill, apparently, when I was 47 (getting on for two years ago) but none of the tests (lots of them) showed with what. I had hallucinations, amnesia, kidney failure, was sedated, intubated and ventilated in the critical care unit … I came round remarkably quickly, given how ill I was, but have been left with the possibility of having seizures. None of my MRI scans and EEGs have showed up anything abnormal, but I have seizures if I don’t take medication, and even if I do, I have one every few weeks, sometimes seeming to have some cause (lack of sleep, stress, period, or whatever), sometimes not. I hate taking the medications – I’ve tried several, and they have all caused side effects, and I also don’t like the animal experimentation involved in creating drugs. If it was just me, I would try to live without them, but it seems that I have to think of other people. I can’t make it more likely that I’ll have a seizure while cycling and cause a serious traffic accident. I don’t want my work colleagues to have to cope with my seizures. It is not ‘fair’, because I have lived a really healthy life all my life – never smoked, taken illegal drugs or drunk alcohol, have eaten a good diet, done yoga and other recommended therapy things … If I had known what it was going to take to pull me through the illness and what I would be left with, I’m not at all sure that I would have said yes – I kind of think that it was my time to go, and modern medicine prevented it, as it does in many cases where the life that is left is less than desirable, but people have to live it because modern medicine can save it. This is probably not a regular view, though. My brain was affected by the illness, and the AEDs make things worse. I am a fraction of my former self, and life is such a struggle. I do my best to carry on as cheerfully as I can, but I find it hard to have the sort of spirit that some of the other people here seem to have.
    
    LikeLiked by 1 person
    
    Comment by Phyllis Green — September 2, 2020 @ 11:58 AM
  - You do have spirit — the spirit of a survivor. And all of your care about others. It was not your time to go. Even if you may have wished it.
    
    MRIs and EGGs don’t always show up seizure points in the brain.
    
    Beyond EEGs — Diagnostic Tools for Epilepsy https://epilepsytalk.com/2017/02/23/beyond-eegs-diagnostic-tools-for-epilepsy/
    
    Perhaps the illness itself was what precipitated the seizures. I can only guess. But with all that stress on your body, seizures can be an after-effect of the cause.
    
    I agree that AEDs are a compromise, especially with the side-effects. But, in many cases, it is the only option we are given.
    
    LikeLike
    
    Comment by Phylis Feiner Johnson — September 2, 2020 @ 2:11 PM
  - A fMRI sometimes shows what other tests can’t.
    
    LikeLiked by 1 person
    
    Comment by HoDo — September 2, 2020 @ 2:20 PM
Useless Ness, (PLEASE FIND ANOTHER NAME)

Your seizures no doubt resulted from traumatic brain injury after that horrific car accident.

This article may be of interest:

Traumatic Brain Injury and Epilepsy

https://epilepsytalk.com/2019/02/16/traumatic-brain-injury-and-epilepsy-2/

LikeLike

Comment by Phylis Feiner Johnson — August 9, 2020 @ 10:09 AM

Reply
For some of us, an EEG shows nothing and never will. It takes an MRI – this from my neurologist – and sometimes only a fMRI. Sometimes you need to insist, so it’s best to find out which works for you. Otherwise some lack wit will write you off as a drama queen; or, in my case, as a junkie.

LikeLiked by 1 person

Comment by HoDo — August 9, 2020 @ 10:40 AM

Reply
I hope you don’t mind but I wanted to show you a poem I was going to send out when I reached my 20-year seizure-free mark to see what you think about it:

When I was thinking seizure-free
I thought five years was plenty
But now I see there was more to come
I’m looking at year 20

From now on, feelings like an aura
They just aren’t gonna scare you
“Think you’re a seizure? Go ahead.
I dare you, double-dare you.”

And then admire what happens next
The feeling goes away
Your streak of being seizure-free
Just added another day

So now look what was next to come
You’re 48 and who would think
It’s something you could never do
But now you’re allowed to drink

I think there’s something wrong with this
How my first night drinking would be
I’m headed home after two of them
And my son is following me

At 52, there was something else
I knew I’d never done
I watched my family do a lot of it
So then I wanted to run

Getting overheated which led to seizures
Was the biggest part of my fears
But with everyone’s help, I started to run
In races the next ten years

The next event to start in my life
A grandparent I would be
And now here’s something I feared before
A grandchild being watched by me

Just having people count on me
Was something I waited for
So here I am and I’m in charge
Of a granddaughter I adore

I guess I must have succeeded
With my first job of childcare
By now every grandkid has been around
With only grandpa there

Though it started with a rough beginning
My career got better with time
The fact I made it with just a few bumps
No one’s happier than I am

Working 31 years for Uncle Sam
And 42 years all together
It was like a storm becoming blue skies
If you compare my career to weather

So now where do I go from here?
Oh well, I’m not in a hurry
Now that I can live life day by day
And for seizures, I no longer worry

And who knows? Seizures may return
But there’s something you can’t take away
It’s these 20 years of paradise
And that feeling is here to stay

LikeLiked by 2 people

Comment by Ed Lugge — August 9, 2020 @ 11:29 AM

Reply
Oh Ed, That’s wonderful! I love it.

LikeLike

Comment by Phylis Feiner Johnson — August 9, 2020 @ 11:35 AM

Reply
- Thank you. I want to send it out to people who are asking about surgery and need the inspiration.
  
  LikeLiked by 1 person
  
  Comment by Ed Lugge — August 9, 2020 @ 3:02 PM
  
  Reply
  - Not only are you talented, you’re noble, too!
    
    LikeLike
    
    Comment by Phylis Feiner Johnson — August 9, 2020 @ 3:25 PM
The Enemy within

My store is long, but i’ll make it short as i can.

When i was 6 in upstate NY, Rhinebeck, mom took me shopping and getting back into the car somehow my door did not close right. Well first left hand turn she took i was out the door saying hello to the pavement. Had a concussion and came to in the hospital.

When i was 10, got knocked off my bike onto my head another concussion happened and went in and out of consciousness.

At 18 got into a fight 2 against 6 and got knocked out and head was swollen.

At 35 was getting weird sensations, numbness in fingers, falling down for no apparent reason, then getting horrible headaches in the mornings at work.

Went to docs nothing came of it, take pain pills and hope ur headache goes away miraculously. 🙂

At 38 the big grand daddy of all visited me a Grand Mal, then afterwards the biggest headache i had ever had. So through some convincing i went to the ER, they worked on me for a few hours, running tests till they decided on a head CT. I went to the ER at 4pm and at 9pm the nurse comes and tells me to lay down on a stretcher. Ok, i thought, would be a lot better than sitting on hard plastic chair. At 10pm the nurse comes back and said she consulted with a neuro and I have a brain tumor and it’s big and needs to come out right away. She said it was so big that i could go into a coma if not removed right away.

Talk about a twilight zone like feeling. That was on a monday, wednesday evening i was having surgery, Sat morning i was released with a successful surgery removal. After i stopped taking the steriods for swelling, that’s when the seizures started. Small at first, numbness in finger tips every 2 weeks then it got bigger and bigger the seizures. My whole arm would flail, then thumping in the side of my head. I went on the roller coaster ride of which meds can make it better, or should i say which can make it worse. After the first med i was on, keppra my seizures seemed to be getting worse. So i asked to be put on something else. He wanted to add to that med. I told him why would we add to it when it might be the cause of my problems. I insisted we try the meds one at a time. I don’t want to be playing guessing games on which is causing what. So we went down the list trying different ones. Most were aweful and did not help. Dilantin was horrible, gave me visual auras, and did not help. Then Lamotrigen was tried, at this time my seizures were like one every month. With lamotirgen it made it every 2 months, i was happy, finally something that seems to work. NOPE, it postponed it but made my seizure 5 x worse, the new seizures would physically beat me up, to the point where it would knock me out because the pain was so much, like my neck would break if i didn’t. Then on to Gabapentin and u know i have praised that med many a times here before.

I had mri for 10 yrs after the removal and luckly no return of tumor.

I still have seizures, but i’ve been able to deal with them a lot better, rather than having them once a month i have them like once ever 3 or 4 months now. Once i went for 8 months without.

Be strong and remember there is only one way to go when u are at the bottom.

LikeLiked by 1 person

Comment by Zolt — August 9, 2020 @ 7:47 PM

Reply
- Oh Zolt, what a horrid roller coaster ride you’ve been on.
  
  Was the first Grand Mal an indicator of the brain tumor? Or do you think it might have been a delayed reaction to all the traumatic brain injuries?
  
  It’s difficult to figure it all out. And make peace with the situation. Traumatic brain injuries? Seizures? Brain tumor? Surgery? More seizures? More meds?
  
  I don’t know if I would have had the strength to fight the odds that you were against. Or the guts.
  
  I suppose it’s sort of a happy ending. But the journey must have been like a trip through hell.
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — August 9, 2020 @ 8:42 PM
  
  Reply
Yeah, the first grand mal was a reaction to my tumor growing too big. It was the size of a baseball the time i had my first grand mal at age 38. If it would have grown any more i might have gone into a coma, said the hospital docs and nurses. At age 35 was when i had the first ever seizure i can remember. At that time i presume my tumor was getting to big for it’s place already. It was a meningenoma, that was not cancerous, well it was a type II so that means it was on the fence, between wanting to be cancerous and not. 🙂 Luckily it was not. When i went into the ER i didn’t even know what seizures were, i had called it a faint spell. hehehe

Supposedly I read meminginomas grow like 4mm a yr. Some yrs more than others. And sometimes they go dormant. So who know how long it had been in me.

Also the volume of the tumor was the size of a baseball, but the actual shape was more like a football, right over the sensory strips of the brain.

I’m just happy i got a new lease on life and was able to turn my life around financially and quit my job and retire at 48, thanks to some good investments and money management. Brought my dream ranch 14 acres and even tho i’m not rich, i’m not poor and i can make ends meet without having to rely on others. Yes, the American dream is alive and well and don’t let anyone tell u otherwise.

LikeLiked by 1 person

Comment by Zolt — August 9, 2020 @ 9:20 PM

Reply
- But wow, Zolt. Look at what you had to go through to reach that dream. Pain, suffering, uncertainty… And thanks to your steadfastness and planning, things turned out.
  
  But, I believe YOU are the real architect of your dream.
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — August 9, 2020 @ 9:40 PM
  
  Reply
I was diagnosed at age 23 with temporal lobe epilepsy. I had a massive head injury in a car accident at age 19, when I had a grand mal in the ER.
I tried every med. I tried alternative treatment, did inpatient brain tests and double-blind drug studies.
Nothing gave me seizure control.
And then the laser ablation was brought up. More inpatient tests, lots of headache and tears, but the surgery ended my seizures at last!! So I was given a new lease on life, and I’m so thankful!

LikeLiked by 1 person

Comment by Suzanna Price — August 10, 2020 @ 9:47 AM

Reply
- What a wonderful ending to such a frustrating story. After all those trials and tribulations, you can surely understand and appreciate your new lease on life.
  
  Congratulations!
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — August 10, 2020 @ 9:51 AM
  
  Reply
I would and will never sugar-coat my nightmarish experience with Epilepsy; the trauma, discrimination, ostracism, exclusion, sexism, feeling stigmatized, anxious, rejected, depressed, disregarded and feared.
Yes, I am lucky to have had a handful of loving family, friends and some decent professionals and those with online blogs to help me through.
This is 2020, not 1820. You would never know sometimes.

LikeLiked by 1 person

Comment by skolly9 — August 10, 2020 @ 6:33 PM

Reply
- Oh I do understand you and Im glad you do have family that cares and would help.. People like Ms. Phylis and this website helps people with no where to talk to people with the same experience.. I would like to hear more of your personal story… There was a reference to 1820 and the experience then compared to now and how some has not changed one bit which is the Gods honest truth!!!
  I read once President Taft’s wife the First Lady had epilepsy and when she was having a seizure at official dinners Taft would put her napkin over her head until done.. They presented it in the book like it was something great he did for her and thats what she wanted.. Maybe cause she was shamed??? (Might be wrong about which President) until i had epilepsy i thought that was a great thing he did for her!!! I know different NOW!!!! I RESPECT YOU FOR WHAT YOU WERE ABLE TO ACCOMPLISH WHILE EPILEPTIC…
  
  LikeLiked by 1 person
  
  Comment by Useless Ness — August 11, 2020 @ 12:30 PM
  
  Reply
I hear you. I was treated like damaged goods. Until I learned that having epilepsy didn’t define me.

I was a person, a writer and someone who had a lot of love to give.

So, I struck out on my own path. And the rest is history.

LikeLike

Comment by Phylis Feiner Johnson — August 10, 2020 @ 7:28 PM

Reply
Mine started in June of 1981. My sister was about to head out for elementary school that morning and I have a GM! My first of about three that day. Mom freaks out, and had to drop my sister off at a relatives before hauling me to our GP’s office about 1/2 hour away!

I have another one and he administers one of the older seizure drugs and rides with me to the hospital, about 15 minutes north of the clinic. I have a third in the hospital shortly after arriving. By that point my breathing due to the drugs was very shallow.

Mind you I don’t remember any of this firsthand.

So the hospital discovers I have a brain tumor and starts mentioning a term my folks have never heard. Neurofibromatosis. Turned out I was diagnosed about 18 months prior when they operated on a tumor on my leg, but they were never told about this genetic condition.

SO they do an EEG (I remember part of that) and a CT scan to get an idea of where they need to go. AT this time the MRI machine was JUST starting to come out, so not many had it yet.

Surgery. They open the skull and “core out” the star shaped tumor (“astrocytoma”) anticipating the remaining strands will die off, which thankfully they did. Before the surgery and all this, the tumor had been growing, and kept growing. It ran out of room in the skull and started pushing back on the brain. This slightly compressed some of the tissue, which is where my seizure activity originated from.

So I am started out on an oldie but reliable med, phenobarbital. About a year later they add a new drug (at the time) Tegretol. This combo worked for about 13 years. Shortly later my “rollercoaster” of medications as I call it starts. We up the teg beyond range (up to 2200mg/day). Try Dilantin and Depakote. Switch the Teg over to the XR format. Try adding Lamictal. Try Teg with Depakote and Dilantin (NEVER LET YOUR DOC DO THAT).

It continues. Keppra is added to the Teg and Dilantin, Another 5 or so drugs are brought in. I was satisfied having one GM ever 3 months compared to weekly!

Now my neuro changes fields, and the clinic by me closes. I ended up where I am at now at a clinic in the cities about an hour away from me.

After a few attempts to gain control and a lot of testing at this new facility surgery is brought up 30 years after my initial brain surgery. I jumped at the chance. Another round of *extensive testing* and Surgery is a go. It was over 7 hour procedure (anterior temporal lobectomy, left hemisphere) but successful. Slight hiccup after where the CSF (brain fluid) wasn’t draining properly and I ended up spending more time in the hospital to get that working properly than I did for the surgery.

Within 3 months I was driving again! I hadn’t driven in about 16 years. Since the surgery I have not had a seizure. I had a case of sleepwalking and had to stop driving for 3 months, but that was the only hitch.

Sorry I went Tolstoy on my medical history.

As a kid in school I had bullying from the fifth grade until I graduated.

I already was an introvert, so friends were few but true. During school I had a support group to help. I could count the school friends I had on one hand.

Didn’t complete my college program (audio recording) but worked a fest for 6 years and gigs for a few more than the fest. Totally loved working concerts. It made me feel important.

The epilepsy never effected my dating, but after a unexpected turn in one relationship I have been single since.

Since the surgery^ I became much more active in medical presentations, fundraisers, and social events for people with medical conditions. I was even complimented by a college professor (medical) on my knowledge being far above what you would expect from the average person.

Hobbies. I became an avid photographer mainly wildlife. I have the chance to see such a broad range just out my window. I focus mainly on birds, but given the chance I’ll take photos of just about anything in nature….and airplanes!

LikeLiked by 2 people

Comment by Travis — August 16, 2020 @ 12:37 AM

Reply
- What a journey. Bad, worse, better and in between, until you reached your solution. And still there was social sacrifice which just isn’t fair. Especially after all you’ve been through.
  
  The drug roller coaster must have been a nightmare. But you’re not alone there. Many people have to kiss frogs before they find their “magical medical mix”. I was no different at the time.
  
  But your grit and determination are nothing short of amazing. You fought the good fight and ultimately, you came out on the winning side.
  
  Congratulations Travis. I’m proud to know such a warrior.
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — August 16, 2020 @ 9:55 AM
  
  Reply
I am crying. This is so beautiful! Also I am glad to made a 40 year record. It wasn’t easy after all 😍💙

LikeLiked by 1 person

Comment by Manahil Mansha — September 15, 2020 @ 7:05 PM

Reply
No Manahil. But the journey’s worth the trip! 🙂

Tough sledding, but sometimes, sledding can be fun.

And in my family, 40 years is a something to brag about!

LikeLike

Comment by Phylis Feiner Johnson — September 15, 2020 @ 9:07 PM

Reply

Leave a comment Cancel reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.

My history—herstory. Ironically I just turned 53 on 8/5 and it has been 13 yrs since I was diagnosed. W/O telling the name of the drug to stop smoking I took 13 yrs ago was the cause of a tremendous seizure that caused cardiac arrest and damaged my brain to the point of now having a 5th grade comprehension, no short term memory due to the destruction of my hippocampus. I now am a very fortunate woman with the neuropace installed 4 yrs ago. I have had no seizures since and actually I am going later to get my Drivers License renewed. My real suffering now is all the meds I think 7 rx their interactions and cost. There are good days and bad days. Again Ironically I just had my bi-annual visit with the head of the neurology dept of the Cleveland Clinic last week. I am so fortunate to live in Akron. Dr. Nair was able to see the recorded brain activity of my neuropace –it has all the past but with all this ridiculous amount of stress I am having more seizure activity that the neuropace has stopped. Last week I found out my mother who has Alzheimers now who paid for all my health care costs—3 brain surgeries, meds that were over 2000/mos —had to change Memory Care Nursing Homes because of sexual abuse to the residence. My sister sent me the article showing the case trial etc. The day I read that I had 7 seizures—It was like when we saw the graph of the seizure activity being normal most days none—menopause 2-3 every once in a while was so high and out of place wowowowow. My doc freaked too. He knew mom well. Having her lose her memory and losing identity has been way too much for me. I am seriously told to rest and relax. I am not to get overwhelmed—going to the grocery store and seeing all the products/ colors noise is a very rare occurrence. I have several shrinkypoos on call and one said well Laura with this pandemic your used to this way of life. I am handling this better than others. From the law suit for the med I recv’d $10,000. After lawyer and taxes a check for $6,400. Is all I got. Stress, menopause has made me really out of it. I am always anxious. I absolutely should not be alive my first seizure was when I was in my drive way after a 45 min drive home from work and an aura occurred I couldn’t figure out how to place the car in park. I woke up in the hospital because my neighbor across the street saw my car roll back out of the drive way to the street. I was a very successful Art Gallery director art consultant sales trainer won trips from other co.s earlier in my career selling Mercedes and fine jewelry. I had just married the love of my life decided to try to have a baby never had one he was going to stay home even mom would pay for adoption if needed—STOP SMOKING and play in bed. You heard the rest. We are still married. He is a wonderful caregiver but I certainly am not the person he married. It sucks. Laura Hood

Sent from Mail for Windows 10

LikeLiked by 2 people

Comment by Michael Hood — August 7, 2020 @ 10:44 AM

I don’t know what you took to stop smoking, but I took Wellbutrin and it was a mess.

Two heart attacks (in the ER), an induced coma, then five more days in the hospital.

Eventually, my cognitive abilities returned (my husband is convinced that my brain rebooted) and I began Epilepsy Talk with the aim of helping others.

As far as stress. You know, it’s the #1 trigger.

Stress can increase cortisol, known as “the stress hormone” because cortisol is secreted in higher levels during the body’s “fight or flight” response to stress.

And, it’s responsible for several stress-related changes in the body which also may influence seizure activity.

Negative emotions related to stress, such as anger, worry or fright, may also cause seizures. This happens because the limbic system, the portion of the brain that regulates emotion, is one of the most common places for seizures to begin.

And yes, hormones are no fun either.

Research has shown that seizure discharges in certain brain areas can alter the output of hormones from the brain, and sex hormones can influence how the brain works.

For example, estrogen has been shown to increase seizure activity, while progesterone can have anti-seizure effects.

Seizures that are most likely to be affected by hormonal changes are partial seizures that involve the temporal or frontal lobes of the brain.

However, hormonal associations may also be seen with generalized seizures.

The temporal and frontal areas of the brain are closely connected to the hypothalamus and pituitary glands of the brain, which control the release of hormones.

And side effects are truly a crap shot. Which is worse, the seizures or the side effects? I also take a mound of meds, but happily it hasn’t made me “dumb” or affected my cognitive abilities. I guess I’m one of the lucky ones.

As far as jobs, I’m sure that put you in a tail spin and didn’t help your feelings of self worth. But to have a loving, caring husband, is the greatest gift of all.

Don’t sell yourself short. Believe in yourself and know that you’re worthy of love.

LikeLike

Comment by Phylis Feiner Johnson — August 7, 2020 @ 11:56 AM

- I take issue with the term “negative emotions” for fear and fright. They are often appropriate and useful, even crucial for survival. Worry – not so much.
  
  LikeLiked by 1 person
  
  Comment by HoDo — August 7, 2020 @ 3:09 PM

Yikes, here it is end of term and you want a 25-page paper by Monday! Will see what can be done. Looking forward to watching others take the floor, to hearing you all speak.

Comment by HoDo — August 7, 2020 @ 11:08 AM

Can you do a “Reader’s Digest” version? I know there are no “”Cliff Notes”! 🙂

LikeLike

Comment by Phylis Feiner Johnson — August 7, 2020 @ 11:58 AM

- Hmm – haiku?
  Since Readers’ Digest is a family magazine, probably not.
  
  LikeLike
  
  Comment by HoDo — August 7, 2020 @ 3:11 PM
- That would be a pretty long haiku, wouldn’t it?
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — August 7, 2020 @ 4:16 PM
- Different. Bad.
  Neglect. Trauma.
  Nerdly job.
  Advanced degree.
  Symptoms. Diagnosis.
  Dubious meds.
  More nerdly jobs.
  Balancing act.
  Giving back.
  
  A haiku and a half.
  
  LikeLiked by 2 people
  
  Comment by HoDo — August 7, 2020 @ 5:44 PM
- Well that just about covers all bases.
  
  Artfully!
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — August 7, 2020 @ 6:30 PM

At age 3, I was getting scared for no reason. The first thing I would do is find my mom or anyone else who was nearby and ask them to hold me until I felt OK again. Eventually, my parents decided to take me to our family doctor and he told them, “It could be epilepsy but it’s just a minor form.” Minor? From that point forward, it was getting stronger. I didn’t just get scared. I blacked out.

I was finally taken to neurologists at Barnes Children’s Hospital in St. Louis where I was finally given the tests, the pills, everything I really needed. They couldn’t tell me how it started but we felt it was one of three things: I had a birth weight of 12 lbs. 9 oz., I was pushed down a flight of steps by my brother or it was from the 105 fever I had.

Things got better for a while. I made it through all of high school without a seizure. But then came two reasons I would put a stop to my progress: My sister who was like a mother to me died just 30 minutes after I saw her and talked to her at the hospital. She was 31. 15 months later my mom died. The two women who were my rock were gone. I got mad, depressed, everything you shouldn’t do if you want to stay seizure-free. I even thought about suicide but what saved me was how my mom explained to me earlier what would happen to me if I ever did it. Then back came the seizures.

While I was in need of help once again, I was too old to go to Barnes and the local neurologist was just no help. Then a lady from work brought me an article from the newspaper on an epileptologist. I called, asked for help and they set me up for tests. He eventually got me started on another long run of seizure-free days. But then my dad died and once again I couldn’t handle it and back come the seizures again.

One night I got a call from my other-in-law. She asked me if I was watching Discovery Life Channel. There was a woman complaining about everything I didn’t like about epilepsy and she’s decided to have surgery. I watched the whole surgery and by then, my wife knew what was coming next. I wanted her to agree with me that I needed that surgery. I also needed to convince my epileptologist that I wasn’t getting enough control of my seizures to feel safe the rest of my life.

I had the testing done where I saw three of the worst seizures I ever had, found I was a candidate for surgery because everything was coming from the left temporal lobe and got a date for surgery – my sister’s birthday. The date got moved back but I want to remember my sister for all the right reasons. I had the surgery, got out of ICU in just 12 hours and was being asked if I wanted to go home after just three days. In the meantime, I finally learn what caused my seizures – my 105 fever.

Six months later I had an eeg which showed no sign of seizures. I went off the first of three meds, Trileptol. Six months later I went off another one, Keppra. I had been taking Dilantin for 35 years so it was me who said I want to keep taking it to be safe. 5 1/2 years later when I learned Dilantin was causing Vitamin D problems, I finally let go of my last pill.

14 years I’ve been off all meds. December 11 marks 20 seizure-free years since my surgery. This is why I keep calling it A Second Chance At Life.

Comment by Ed Lugge — August 7, 2020 @ 12:10 PM

Oh Ed, losing the rocks in your life must have been devastating. Not to mention, stressful. But I think it’s the love you had for them that carried you through. Even if it was a conflict.

The mystery of the origin of your seizures must have been scary, too. How can you “fix” something, when you don’t know its origin?

But happily, you found an ace epileptologist, and you were brave enough to venture (and even insist) on the unknown. The consequences are wonderful. And I congratulate you on your perseverance and courage.

You are an inspiration to us all.

LikeLiked by 1 person

Comment by Phylis Feiner Johnson — August 7, 2020 @ 12:25 PM

- Thank you because that’s what I want to be…an inspiration!
  
  LikeLiked by 1 person
  
  Comment by Ed Lugge — August 7, 2020 @ 1:41 PM
- One more thing and I feel it’s important. Two things you must possess to control yourself as you prepare for surgery are confidence and a sense of humor. People praying for me provided the confidence. When I say sense of humor, here it is.
  
  I was 42 and had a mother, father, sister and brother pass away before the surgery. Our family game was pinochle and everyone wanted to play. I could see my mom and sister taking on the two men and none of them were giving up their seat. I felt every one of them was looking at me telling me they don’t have a place for me so I’m staying right where I’m at. And I listened. I’m still here.
  
  LikeLiked by 2 people
  
  Comment by Ed Lugge — August 7, 2020 @ 2:33 PM
- I agree with the sense of humor. That and curiosity (“May I see the scalpel?”) got me through the scariest surgery.
  
  LikeLiked by 1 person
  
  Comment by HoDo — August 7, 2020 @ 3:16 PM

Well, my story started later on in my life, I never suffered seizures as a child I didn’t have my first seizure until I was in my thirties which was a result from me having come down with viral meningitis which caused me to have a massive seizure and put me in the hospital for a week. This was back in the late 1980s. The seizure was so intense that it temporarily caused my kidneys to start to fail, luckily they started to work again, the paramedics said that when they came to attend to me they witnessed me running around just shouting, the one paramedic stated he had never seen anything like that before, except with serious head injuries, the two paramedics had to tackle me down to the ground in order to place me in the ambulance and to attend to me. That tells you just how intense that seizure was, and I can tell you when I finally came out of my seizure I was so exhausted! It felt like I had run a marathon my entire body was so sore, and every muscle in my body hurt, I had never felt anything like that before, or even to this day. But, here is the strange thing, I didn’t have another seizure until about thirteen years later when all of a sudden they started again, and nobody could tell me why back then, and even today not one doctor can explain it, and I wasn’t taking any medication during the time of me not having any seizures. I started taking medication once the seizures started up again, that was around 2001 I have been on them since then. I was on Dilantin for many years but switched to Keppra recently, I’m feeling a little bit better on it, but I still have some terrible side-effects, Dilantin was worse! I don’t have very many seizures now, the last one I had was in my sleep that was several months ago. I inquired to my current doctor about eventually getting off of the medication, but he advised against it right now because I had that seizure a couple of months ago. For me, it’s so frustrating because I don’t have very many seizures I wish someone could tell me why? I hardly ever have them, and what is causing them? I do have to say before I end this story of my life with epilepsy that the doctor’s that truly helped me through this was the natural doctors that worked with me back in 2001 when my seizures resurfaced, the approach that they took, the therapies that they used which were all natural was incredible! I had no seizures the entire time that I saw them, they used natural treatments, changing the way that I ate, they found I had a lot of food allergies and using vitamin therapy they found after doing blood work on me that I was lacking a lot of nutrients. With all their work, I felt better then I had felt in years! I still try to see them as much as possible today. The one thing the natural doctor’s told me back then was they suspect that my Seizures may be caused by some kind of food allergy, but it was never conclusive. To this day I eat exactly as they outlined for me and try to still have some of the same therapies that they gave me back then, the main problem is they don’t take insurance and it can be very expensive. If it wasn’t for the medication I would be feeling much better then I do now. That’s the dilemma that I find myself in today if I could just get off the medication I would be feeling much, much better. So the fight continues! That’s my story, living with epilepsy is never easy.

Comment by Kevin — August 7, 2020 @ 7:51 PM

What a wild ride you’ve been on. I don’t envy you and am so very sorry.

As far as food allergies go, have you ever considered one of the anti epilepsy diets?

Three Anti-Seizure Diets That Could Change Your Life… https://epilepsytalk.com/2018/02/15/three-anti-seizure-diets-that-could-change-your-life/

The source of your seizures must be an unending frustration. How to treat it, when you don’t know the source?

As far as the naturopathic doctors go, good for you. Not many have the faith or courage to go outside of the box.

Obviously, you are a person of perseverance, who is not afraid of alternatives. May they serve you well.

LikeLike

Comment by Phylis Feiner Johnson — August 7, 2020 @ 8:46 PM

By the way, Phylis, I commend you on finishing college. I just went on my math ability.

LikeLiked by 1 person

Comment by Ed Lugge — August 8, 2020 @ 2:24 PM

And I survived on my writing ability. (What a surprise!)

LikeLike

Comment by Phylis Feiner Johnson — August 8, 2020 @ 2:34 PM

I’ve had epilepsy for 10yrs, developed from TBI in rollover car accident.. used up my retirement for meds, medical bills and er trips, then sat at home getting depressed and having seizures.. it’s not fun suicide was the answer until Epilepsy Foundation saved my life from myself and majority of seizures, now I’m very grateful to the professionals, doctors like Dr. Hartshorn and companies that donated the VNS device to save my life BUT it didn’t stop me from thoughts ending my I’d never really had before epilepsy, I call it “Seizures and a .45” like a country song.. I don’t want to show those people I was a waste of their resources and also showing everyone my weaknesses.. I’m here today is all I can say…

LikeLike

Comment by Useless Ness — August 8, 2020 @ 2:40 PM

I found out that I had adult epilepsy when I became an adult—I had my first seizures at the age of 18. Actually, I found out that I had it, but I didn’t know what “it” was. And neither did the doctors. So when they ran tests and came back saying, “there’s nothing wrong with you,” I said “okay, whatever,” and left home to enroll in college. I had fifteen auras or seizures in the next four years at school, but I didn’t know what they were—I called them “spells.” I graduated from college and decided to pursue some more investigation of my condition, but EEGs and MRIs all said I was fine. “Okay, whatever,” I said, and moved to another state to start a graduate degree. This time I had about fifteen “spells” while pursuing a two-year degree, but I graduated and immediately started working. Within the next year my “spells” got more out of hand, and I eventually called up the doctor’s office and said “please—let me come in and talk to anybody!” I was assigned to one of their best doctors, but he listened to my description and said that maybe he should send me to his wife—a psychologist… My “okay, whatever,” was more tentative this time. Things didn’t get any better, so the next year I demanded more testing. Nine years after my “spells” began, I finally was told that they were seizures, was diagnosed with epilepsy, and was put on meds which didn’t provide much protection. It took about twenty years before I made it to an epileptologist. This time I said, “okay, whatever it takes,” and agreed to surgery. I’ve been almost entirely seizure-free for the eight years since.

Comment by Deb — August 8, 2020 @ 10:29 PM

I had kinda the same thing happen with trying to find out what “it” was!!! Accident in 2004 left me with “it” and no one knew what it was..so I went to psychologist and regular doctors before I found the doctor that understood epilepsy. Took me way less time to get diagnosed as epileptic… However because of my job I did not let anyone outside of my family know of my condition.. Eventually things caught up…

LikeLiked by 1 person

Comment by Useless Ness — August 8, 2020 @ 11:01 PM

Wow Deb, Despite all those seizures, you made it through to a graduate degree, with all those seizures! Not many of us could claim that distinction.

As for EEGs; Many of us have heard: Your EEG is normal. You’re fine…(“It’s all in your head?”)

I know of people who have had 5 EEGs, only to be properly diagnosed when they finally had Video EEG Monitoring.

An abnormal EEG does not diagnose epilepsy nor does a normal EEG reading exclude it. (I guess you found this out the hard way.)

But your perseverance is astounding. Especially after being diagnosed with “Pseudo Seizures”.

Good for you for sticking to your mission. And yes. It finally paid off. But not without considerable sacrifice on your part.

And congratulations on finally being seizure free!

LikeLike

Comment by Phylis Feiner Johnson — August 9, 2020 @ 10:03 AM

- For some of us, an EEG never showed anything and never will. It takes an MRI and sometimes a fMRI. Unless you know, there’s the risk of some lack wit doctor putting you down as a drama queen.
  
  LikeLiked by 1 person
  
  Comment by Ho — August 9, 2020 @ 10:37 AM
- I became ill, really seriously ill, apparently, when I was 47 (getting on for two years ago) but none of the tests (lots of them) showed with what. I had hallucinations, amnesia, kidney failure, was sedated, intubated and ventilated in the critical care unit … I came round remarkably quickly, given how ill I was, but have been left with the possibility of having seizures. None of my MRI scans and EEGs have showed up anything abnormal, but I have seizures if I don’t take medication, and even if I do, I have one every few weeks, sometimes seeming to have some cause (lack of sleep, stress, period, or whatever), sometimes not. I hate taking the medications – I’ve tried several, and they have all caused side effects, and I also don’t like the animal experimentation involved in creating drugs. If it was just me, I would try to live without them, but it seems that I have to think of other people. I can’t make it more likely that I’ll have a seizure while cycling and cause a serious traffic accident. I don’t want my work colleagues to have to cope with my seizures. It is not ‘fair’, because I have lived a really healthy life all my life – never smoked, taken illegal drugs or drunk alcohol, have eaten a good diet, done yoga and other recommended therapy things … If I had known what it was going to take to pull me through the illness and what I would be left with, I’m not at all sure that I would have said yes – I kind of think that it was my time to go, and modern medicine prevented it, as it does in many cases where the life that is left is less than desirable, but people have to live it because modern medicine can save it. This is probably not a regular view, though. My brain was affected by the illness, and the AEDs make things worse. I am a fraction of my former self, and life is such a struggle. I do my best to carry on as cheerfully as I can, but I find it hard to have the sort of spirit that some of the other people here seem to have.
  
  LikeLiked by 1 person
  
  Comment by Phyllis Green — September 2, 2020 @ 11:58 AM
- You do have spirit — the spirit of a survivor. And all of your care about others. It was not your time to go. Even if you may have wished it.
  
  MRIs and EGGs don’t always show up seizure points in the brain.
  
  Beyond EEGs — Diagnostic Tools for Epilepsy https://epilepsytalk.com/2017/02/23/beyond-eegs-diagnostic-tools-for-epilepsy/
  
  Perhaps the illness itself was what precipitated the seizures. I can only guess. But with all that stress on your body, seizures can be an after-effect of the cause.
  
  I agree that AEDs are a compromise, especially with the side-effects. But, in many cases, it is the only option we are given.
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — September 2, 2020 @ 2:11 PM
- A fMRI sometimes shows what other tests can’t.
  
  LikeLiked by 1 person
  
  Comment by HoDo — September 2, 2020 @ 2:20 PM

Useless Ness, (PLEASE FIND ANOTHER NAME)

Your seizures no doubt resulted from traumatic brain injury after that horrific car accident.

This article may be of interest:

Traumatic Brain Injury and Epilepsy

https://epilepsytalk.com/2019/02/16/traumatic-brain-injury-and-epilepsy-2/

Comment by Phylis Feiner Johnson — August 9, 2020 @ 10:09 AM

For some of us, an EEG shows nothing and never will. It takes an MRI – this from my neurologist – and sometimes only a fMRI. Sometimes you need to insist, so it’s best to find out which works for you. Otherwise some lack wit will write you off as a drama queen; or, in my case, as a junkie.

Comment by HoDo — August 9, 2020 @ 10:40 AM

I hope you don’t mind but I wanted to show you a poem I was going to send out when I reached my 20-year seizure-free mark to see what you think about it:

When I was thinking seizure-free
I thought five years was plenty
But now I see there was more to come
I’m looking at year 20

From now on, feelings like an aura
They just aren’t gonna scare you
“Think you’re a seizure? Go ahead.
I dare you, double-dare you.”

And then admire what happens next
The feeling goes away
Your streak of being seizure-free
Just added another day

So now look what was next to come
You’re 48 and who would think
It’s something you could never do
But now you’re allowed to drink

I think there’s something wrong with this
How my first night drinking would be
I’m headed home after two of them
And my son is following me

At 52, there was something else
I knew I’d never done
I watched my family do a lot of it
So then I wanted to run

Getting overheated which led to seizures
Was the biggest part of my fears
But with everyone’s help, I started to run
In races the next ten years

The next event to start in my life
A grandparent I would be
And now here’s something I feared before
A grandchild being watched by me

Just having people count on me
Was something I waited for
So here I am and I’m in charge
Of a granddaughter I adore

I guess I must have succeeded
With my first job of childcare
By now every grandkid has been around
With only grandpa there

Though it started with a rough beginning
My career got better with time
The fact I made it with just a few bumps
No one’s happier than I am

Working 31 years for Uncle Sam
And 42 years all together
It was like a storm becoming blue skies
If you compare my career to weather

So now where do I go from here?
Oh well, I’m not in a hurry
Now that I can live life day by day
And for seizures, I no longer worry

And who knows? Seizures may return
But there’s something you can’t take away
It’s these 20 years of paradise
And that feeling is here to stay

Comment by Ed Lugge — August 9, 2020 @ 11:29 AM

Oh Ed, That’s wonderful! I love it.

Comment by Phylis Feiner Johnson — August 9, 2020 @ 11:35 AM

Thank you. I want to send it out to people who are asking about surgery and need the inspiration.

LikeLiked by 1 person

Comment by Ed Lugge — August 9, 2020 @ 3:02 PM

- Not only are you talented, you’re noble, too!
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — August 9, 2020 @ 3:25 PM

The Enemy within

My store is long, but i’ll make it short as i can.

When i was 6 in upstate NY, Rhinebeck, mom took me shopping and getting back into the car somehow my door did not close right. Well first left hand turn she took i was out the door saying hello to the pavement. Had a concussion and came to in the hospital.

When i was 10, got knocked off my bike onto my head another concussion happened and went in and out of consciousness.

At 18 got into a fight 2 against 6 and got knocked out and head was swollen.

At 35 was getting weird sensations, numbness in fingers, falling down for no apparent reason, then getting horrible headaches in the mornings at work.

Went to docs nothing came of it, take pain pills and hope ur headache goes away miraculously. 🙂

At 38 the big grand daddy of all visited me a Grand Mal, then afterwards the biggest headache i had ever had. So through some convincing i went to the ER, they worked on me for a few hours, running tests till they decided on a head CT. I went to the ER at 4pm and at 9pm the nurse comes and tells me to lay down on a stretcher. Ok, i thought, would be a lot better than sitting on hard plastic chair. At 10pm the nurse comes back and said she consulted with a neuro and I have a brain tumor and it’s big and needs to come out right away. She said it was so big that i could go into a coma if not removed right away.

Talk about a twilight zone like feeling. That was on a monday, wednesday evening i was having surgery, Sat morning i was released with a successful surgery removal. After i stopped taking the steriods for swelling, that’s when the seizures started. Small at first, numbness in finger tips every 2 weeks then it got bigger and bigger the seizures. My whole arm would flail, then thumping in the side of my head. I went on the roller coaster ride of which meds can make it better, or should i say which can make it worse. After the first med i was on, keppra my seizures seemed to be getting worse. So i asked to be put on something else. He wanted to add to that med. I told him why would we add to it when it might be the cause of my problems. I insisted we try the meds one at a time. I don’t want to be playing guessing games on which is causing what. So we went down the list trying different ones. Most were aweful and did not help. Dilantin was horrible, gave me visual auras, and did not help. Then Lamotrigen was tried, at this time my seizures were like one every month. With lamotirgen it made it every 2 months, i was happy, finally something that seems to work. NOPE, it postponed it but made my seizure 5 x worse, the new seizures would physically beat me up, to the point where it would knock me out because the pain was so much, like my neck would break if i didn’t. Then on to Gabapentin and u know i have praised that med many a times here before.

I had mri for 10 yrs after the removal and luckly no return of tumor.

I still have seizures, but i’ve been able to deal with them a lot better, rather than having them once a month i have them like once ever 3 or 4 months now. Once i went for 8 months without.

Be strong and remember there is only one way to go when u are at the bottom.

Comment by Zolt — August 9, 2020 @ 7:47 PM

Oh Zolt, what a horrid roller coaster ride you’ve been on.

Was the first Grand Mal an indicator of the brain tumor? Or do you think it might have been a delayed reaction to all the traumatic brain injuries?

It’s difficult to figure it all out. And make peace with the situation. Traumatic brain injuries? Seizures? Brain tumor? Surgery? More seizures? More meds?

I don’t know if I would have had the strength to fight the odds that you were against. Or the guts.

I suppose it’s sort of a happy ending. But the journey must have been like a trip through hell.

LikeLike

Comment by Phylis Feiner Johnson — August 9, 2020 @ 8:42 PM

Yeah, the first grand mal was a reaction to my tumor growing too big. It was the size of a baseball the time i had my first grand mal at age 38. If it would have grown any more i might have gone into a coma, said the hospital docs and nurses. At age 35 was when i had the first ever seizure i can remember. At that time i presume my tumor was getting to big for it’s place already. It was a meningenoma, that was not cancerous, well it was a type II so that means it was on the fence, between wanting to be cancerous and not. 🙂 Luckily it was not. When i went into the ER i didn’t even know what seizures were, i had called it a faint spell. hehehe

Supposedly I read meminginomas grow like 4mm a yr. Some yrs more than others. And sometimes they go dormant. So who know how long it had been in me.

Also the volume of the tumor was the size of a baseball, but the actual shape was more like a football, right over the sensory strips of the brain.

I’m just happy i got a new lease on life and was able to turn my life around financially and quit my job and retire at 48, thanks to some good investments and money management. Brought my dream ranch 14 acres and even tho i’m not rich, i’m not poor and i can make ends meet without having to rely on others. Yes, the American dream is alive and well and don’t let anyone tell u otherwise.

Comment by Zolt — August 9, 2020 @ 9:20 PM

But wow, Zolt. Look at what you had to go through to reach that dream. Pain, suffering, uncertainty… And thanks to your steadfastness and planning, things turned out.

But, I believe YOU are the real architect of your dream.

LikeLike

Comment by Phylis Feiner Johnson — August 9, 2020 @ 9:40 PM

I was diagnosed at age 23 with temporal lobe epilepsy. I had a massive head injury in a car accident at age 19, when I had a grand mal in the ER.
I tried every med. I tried alternative treatment, did inpatient brain tests and double-blind drug studies.
Nothing gave me seizure control.
And then the laser ablation was brought up. More inpatient tests, lots of headache and tears, but the surgery ended my seizures at last!! So I was given a new lease on life, and I’m so thankful!

Comment by Suzanna Price — August 10, 2020 @ 9:47 AM

What a wonderful ending to such a frustrating story. After all those trials and tribulations, you can surely understand and appreciate your new lease on life.

Congratulations!

LikeLike

Comment by Phylis Feiner Johnson — August 10, 2020 @ 9:51 AM

I would and will never sugar-coat my nightmarish experience with Epilepsy; the trauma, discrimination, ostracism, exclusion, sexism, feeling stigmatized, anxious, rejected, depressed, disregarded and feared.
Yes, I am lucky to have had a handful of loving family, friends and some decent professionals and those with online blogs to help me through.
This is 2020, not 1820. You would never know sometimes.

Comment by skolly9 — August 10, 2020 @ 6:33 PM

Oh I do understand you and Im glad you do have family that cares and would help.. People like Ms. Phylis and this website helps people with no where to talk to people with the same experience.. I would like to hear more of your personal story… There was a reference to 1820 and the experience then compared to now and how some has not changed one bit which is the Gods honest truth!!!
I read once President Taft’s wife the First Lady had epilepsy and when she was having a seizure at official dinners Taft would put her napkin over her head until done.. They presented it in the book like it was something great he did for her and thats what she wanted.. Maybe cause she was shamed??? (Might be wrong about which President) until i had epilepsy i thought that was a great thing he did for her!!! I know different NOW!!!! I RESPECT YOU FOR WHAT YOU WERE ABLE TO ACCOMPLISH WHILE EPILEPTIC…

LikeLiked by 1 person

Comment by Useless Ness — August 11, 2020 @ 12:30 PM

I hear you. I was treated like damaged goods. Until I learned that having epilepsy didn’t define me.

I was a person, a writer and someone who had a lot of love to give.

So, I struck out on my own path. And the rest is history.

Comment by Phylis Feiner Johnson — August 10, 2020 @ 7:28 PM

Mine started in June of 1981. My sister was about to head out for elementary school that morning and I have a GM! My first of about three that day. Mom freaks out, and had to drop my sister off at a relatives before hauling me to our GP’s office about 1/2 hour away!

I have another one and he administers one of the older seizure drugs and rides with me to the hospital, about 15 minutes north of the clinic. I have a third in the hospital shortly after arriving. By that point my breathing due to the drugs was very shallow.

Mind you I don’t remember any of this firsthand.

So the hospital discovers I have a brain tumor and starts mentioning a term my folks have never heard. Neurofibromatosis. Turned out I was diagnosed about 18 months prior when they operated on a tumor on my leg, but they were never told about this genetic condition.

SO they do an EEG (I remember part of that) and a CT scan to get an idea of where they need to go. AT this time the MRI machine was JUST starting to come out, so not many had it yet.

Surgery. They open the skull and “core out” the star shaped tumor (“astrocytoma”) anticipating the remaining strands will die off, which thankfully they did. Before the surgery and all this, the tumor had been growing, and kept growing. It ran out of room in the skull and started pushing back on the brain. This slightly compressed some of the tissue, which is where my seizure activity originated from.

So I am started out on an oldie but reliable med, phenobarbital. About a year later they add a new drug (at the time) Tegretol. This combo worked for about 13 years. Shortly later my “rollercoaster” of medications as I call it starts. We up the teg beyond range (up to 2200mg/day). Try Dilantin and Depakote. Switch the Teg over to the XR format. Try adding Lamictal. Try Teg with Depakote and Dilantin (NEVER LET YOUR DOC DO THAT).

It continues. Keppra is added to the Teg and Dilantin, Another 5 or so drugs are brought in. I was satisfied having one GM ever 3 months compared to weekly!

Now my neuro changes fields, and the clinic by me closes. I ended up where I am at now at a clinic in the cities about an hour away from me.

After a few attempts to gain control and a lot of testing at this new facility surgery is brought up 30 years after my initial brain surgery. I jumped at the chance. Another round of *extensive testing* and Surgery is a go. It was over 7 hour procedure (anterior temporal lobectomy, left hemisphere) but successful. Slight hiccup after where the CSF (brain fluid) wasn’t draining properly and I ended up spending more time in the hospital to get that working properly than I did for the surgery.

Within 3 months I was driving again! I hadn’t driven in about 16 years. Since the surgery I have not had a seizure. I had a case of sleepwalking and had to stop driving for 3 months, but that was the only hitch.

Sorry I went Tolstoy on my medical history.

As a kid in school I had bullying from the fifth grade until I graduated.

I already was an introvert, so friends were few but true. During school I had a support group to help. I could count the school friends I had on one hand.

Didn’t complete my college program (audio recording) but worked a fest for 6 years and gigs for a few more than the fest. Totally loved working concerts. It made me feel important.

The epilepsy never effected my dating, but after a unexpected turn in one relationship I have been single since.

Since the surgery^ I became much more active in medical presentations, fundraisers, and social events for people with medical conditions. I was even complimented by a college professor (medical) on my knowledge being far above what you would expect from the average person.

Hobbies. I became an avid photographer mainly wildlife. I have the chance to see such a broad range just out my window. I focus mainly on birds, but given the chance I’ll take photos of just about anything in nature….and airplanes!

Comment by Travis — August 16, 2020 @ 12:37 AM

What a journey. Bad, worse, better and in between, until you reached your solution. And still there was social sacrifice which just isn’t fair. Especially after all you’ve been through.

The drug roller coaster must have been a nightmare. But you’re not alone there. Many people have to kiss frogs before they find their “magical medical mix”. I was no different at the time.

But your grit and determination are nothing short of amazing. You fought the good fight and ultimately, you came out on the winning side.

Congratulations Travis. I’m proud to know such a warrior.

LikeLike

Comment by Phylis Feiner Johnson — August 16, 2020 @ 9:55 AM

I am crying. This is so beautiful! Also I am glad to made a 40 year record. It wasn’t easy after all 😍💙

Comment by Manahil Mansha — September 15, 2020 @ 7:05 PM

No Manahil. But the journey’s worth the trip! 🙂

Tough sledding, but sometimes, sledding can be fun.

And in my family, 40 years is a something to brag about!

Comment by Phylis Feiner Johnson — September 15, 2020 @ 9:07 PM

Epilepsy Talk