Hello and need advice

[Blessed]

Hello all!

So glad to have found this website! Some background info: I had my first seizure at 14 (grand mal) after staying up all night at a church retreat. I had been having myoclonic jerks for years prior to that first grand mal but never said anything to my parents. I was immediately put on Dilantin. I did not have another seizure (also grand mal) until age 16. This one was brought on by having been up late and splashing cold water on my face to wake up the next day. My last seizure (grand mal) occurred at age 17 on another church retreat after staying up late. I am currently 39 and have not had a seizure since age 17. I still have myoclonic jerks and have been officially diagnosed with juvenile myoclonic epilepsy. I was on Dilantin from the ages of 14-33. My neuro suggested I try some of the newer AED's because she said I was too young to be on Dilantin that long. On Dilantin, I was in a fog but I didn't really know it until I came off it. I tried Keppra, Lamictal and Topamax and they all had side effects I could not tolerate. I am currently on Zonegran, 100mg. per day. That's it.

One neuro I saw suggested since I have been seizure-free for so many years, I should try to come off the meds. She did an MRI and EEG and the MRI was normal but in her words" your EEG was scary!" She said she could not recommend that I come off the meds. That was 6 years ago.

I lead a full life. I have children, I can drive, I hold a job, but sometimes the side effects of the Zonegran get to me and I wonder what life would be like without any medication. Would you risk getting off the meds? The zonegran gives me a tingling, prickly sensation, fatigue, gastro-intestinal problems, and sometimes headaches and insomnia. Also, I have intimacy difficulties that I think are associated with Zonegran or maybe it is just having epilepsy. I have had this trouble on every AED I have tried.

I feel so blessed to be able to function as normally as I have been for this long. What would you do?

Blessed
100mg. Zonegran per day
Juvenile Myoclonic Epilepsy since 1982

 

[Bernard]

Hi Blessed, welcome to the forums. :hello:

I'd suggest trying EEG Neurofeedback if you can swing it. After 5-6 months, your EEG patterns might be normalized and at that time, it would likely be safe to taper off the meds.

 

[epiGuy]

Hi Blessed,

You are so blessed to be able to lead a full life.

 

[Blessed]

Thanks Bernard, I think I will try the neurofeedback. I have located a practitioner here in Alabama.

EpiGuy, I am sorry your epilepsy affects your loved ones. I think that is the way it is for all of us who live with epilepsy. When I said I led a full life, I really believe I do but their are lots of things I am missing. My children don't understand why "Mommie is sick" or Mommie isn't feeling well" so much. I know my wonderful husband gets tired of taking care of me. The sexual difficulties are especially hard for him. But we have all adapted (I think!) because we know we are living with a chronic condition. We all get frustrated and depressed sometimes. But we just do the best we can with what we have been given.

What is your situation?

Blessed
100 mg. Zonegran per day
Juvenile Myoclonic Epilepsy since 1982

 

[POSITIVEPERSON]

Hi Blessed you have a wonderful attitude and that will help you get thru the difficult times. Wishing you the best of luck with your nuerofeedback. I went with homeopathy.
I have weaned down to 50 mgs of mysoline. It has been difficult once I reached the last half of tab. of mysoline. (125 mgs) Getting off that has been a job itself. But I am super grateful for getting this far.
Wishing you a sz free life and med free life.
Riva
best of luck !!!!! enjoy the moment!!!!!

 

[Blessed]

Thank you Riva! I am going to look into homeopathy and supplements as well. It is so encouraging to talk to people who have had success going off the meds. Here's hoping!

 

[brain]

What is your situation?

Blessed

Hi Blessed!

My son's now almost 23 years old, and he's
had to endure with his mother having it all
of his life, however, his mother just doesn't
have epilepsy only, she also has other neuro
problems as well - all from birth. A genetic,
inherited / DNA trait & disease. He knows
he has some of it too. Fortunately, while I
have seen him what may have been a possible
epileptic spells, he really needs to be updated.

He knows and understands the ups and downs
even though we didn't know anyone who had
Epilepsy, so basically, we were pretty much left
"on our own" to figure things out, until we had
a wonderful Neuro and a Physician who gave
instructions to my son when he was young as
what to do in the event of Grand Mal (Tonic
Clonic) and if it continued or I didn't come out
of it, et cetera. He was just a little boy, and
he had saved my life several times (before 911
and when 911 became effect). But when we
lost that Neuro (his father passed away and
my ex also changed HMO). The tide changed
again.

He could tell you all about the medication(s) I
had been on, and how some of them drove him
up the freaking wall, and how some of them made
me sleep all the time (downers) or vice versa
(uppers). He could tell you all about the titrations,
when I would go through seizure modes through
change of meds, or the meds were triggering the
seizures.

He knows it all. He knows that his mother has
the genetic / DNA inherited trait from birth, but
for years we had been awaiting for some type
of response.

Well, I recently finally did receive the Lab Work
results. Now he has to be checked too in turn.

We already know he suffers from neurological
problems, while I've seen him have Petit Mals
(Absence) when he was younger, but it was
his father that was standing in the way. He
did have EEG's performed and like mine, which
ranged from normal to abnormal but he only had
3 or 4 done and the last one done was when he
was 5 or 7 years old, I can't remember. One
thing about my ex-husband was he kept changing
HMO's like crazy.

But he understands, and it does take a toll on
him ...

HE HATES EPILEPSY AS MUCH AS I DO!
HE PROBABLY HATES IT FAR MORE THAN
YOU REALIZE!

 

[Stacy]

A story...or two

Well, I have to tell you a couple of things that have happened to me. I'm not a DR., nor am I TELLING you what to do. Now that I've put my disclaimer out there, ....

Bernie and I have also run into our problems. We've been married for 11.5 years now and I grant some of that credit to my tantrum when we were married about 1-2 years. We took a relationship building class (which Bern was against) and learned quite a bit. One thing was a different level of intimacy. I understand exactly where you are coming from. We are getting over it, but I feel like the medication does a number on me.

At some point I discovered my epilepsy is hormonal, and is VERY connected with my monthly visits, as well as my sugar intake. I have heavy periods and thus lose lots of blood, and my blood sugar levels drop.

I read a book "Epilepsy: a new approach what Medicine can do; what you can do for yourself" by Adrienne Richard & Joel Reiter, M.D. This book advised me to go purchase a laboratory notebook from the store and start keeping notes of everything. This I did. I wrote down EVERYTHING.... sigh... Here's some of the list...

* When I slept and when I woke, including good vs. bad sleep.
* What pills I took and how I felt afterwards
* What I ate and how much of it, and when.
* The date, the times and milisecond (just kidding)
* When I went to the restroom and what it looked like
* When I exercised, what I did, and how I felt after (includine energy levels)

Basically, I only had 4 major columns on the sheet. "Date", "Time", "Activities", and "Results".

After having several sets of seizures, I realized that each set happened 2 days before or after my period, and 1 day after which I had eaten a whole bunch of acidic fruit (once an entire ruby red grapefruit, and once an entire 1/2 of a pineapple). I also noticed that my seizures became worse if I neglected the exercise.

The other thing I noticed was the time my seizures occured. It was ALWAYS right in the morning first thing (between 4-7AM). If I opened my eyes, got out of bed, and got cough medicine for my cold, I was sure to have a seizure. If I opened my eyes and went to the restroom and came back to sleep, I would have a seizure. It was always in the R.E.M. sleep phase and thus for a long time I was afraid to go back to sleep.

I was able to go back into the notebook and research exactly what happened and when. Here's the funny part. I went to my Dr., and showed him the notebook and the calendar, and told him in a rather sarcastic and harsh tone that I needed ESTROGEN! He agreed and we tried to put me on 5mg of Pregnenolone every morning. This has definately helped. I've trained myself (on 10 my Pregnenolone) to grab it as my first action in the morning. It's sublingual, so I can go back to sleep. I don't have sets anymore, but do remember my dreams... oh boy. I'm still working on the rest.

Something else that helps is that I stretch before I go to bed. There are always certain muscles that are more prone to tention furing a seizure. These get extra attention before bed. I do about 15 minutes worth of Yoga in the morning and my day goes much better. Gotta run. Hope this helps.