[shezbut]

I've had E all of my life, but my sz's were unrecognized and untreated until I was 27 y.o. and had my complex partial secondarily-generalize into a tonic-clonic.

I tried many medications and combinations, without gaining control over my seizures. In 3/06, I had surgery to remove the part of my brain always causing the seizures. The "seizure focus". Recovery from the surgery was difficult in several areas for me and my depression deepened very significantly. One year later, 3/07, I slipped on the ice and fell hitting the left side of my head (where the brain surgery was done) on icy pavement. Unfortunately, the damage was pretty significant. A very strong "mild" TBI, which increased side effects of surgery and brought up a couple of new issues. Throughout this time, my seizures were controlled though. Just occasional auras, but doctors weren't concerned about the electrical activity within my brain anymore.

After a couple of years of deep depression, doctors pulled me off my anti-epileptic medication ~ phenobarbital. A bad med to be on when suffering major depression. My epileptologist has continued to see me annually since recovering from the surgery and brain injury. He's been very hesitant to put me back onto med's, to control my simple partials, since I'm both highly medication resistant and depression has continued to plague me.

Sorry about all of the information, I just want my post to be more understandable by general population. Many people with E can't even relate to the many set-backs that I've had.

Well, a few weeks ago, I woke up early to go to work in the morning. I got up and a couple of minutes later, I lost my sense of hearing and then sight. Completely black, and silence (minus a quiet ringing in my ears), lasted a minute or so. The sight sense slowly came back, and then the hearing (with the ringing becoming more and more loud). Precisely the same types of auras I used to have before being diagnosed with E. It happened twice, I called in sick to work, and then passed out for several hours. When I woke, I was still exhausted, but otherwise felt okay. Had 2 more seizures, so I called my doctor's office and was advised to go to the E.R.

My epileptologist did an EEG, which showed some abnormal activity deep within my brain, just below the area removed in the left hippocampus. He then put me back onto medication. Depakote ER this time. It knocked me out big time at first, so the doc put the dosage down a bit. The night of my lower dosage (past Saturday), I had a seizure when returning to bed from the bathroom. I called my doc on Monday, to see if we could put me back up to a higher dosage, just at different times. No go. He wants me to come in for intracraneal testing again. A LONG EEG, where you stay hooked up to wires, and on video, 24/7, until activity is seen and treatment decisions are made. Fudgsicles!!

I really shouldn't be surprised, I guess. Treating my sz's has NOT been easy at all. That's why I went to Mayo Clinic. My old neurologist tried everything that he could think of, but he couldn't control my sz's. I'm SO worried that I'm going to lose my driver's license, which will have such an impact on being active with my daughters! My depression is already low, going back onto phenobarbital isn't tempting at all. The Depakote ER is a real tricky med for me. I got pulled off it back in 2000, due to really low WBC count ~ which is when I was put on it's opposite, phenobarbital. These two meds were the best at controlling my sz's. Other meds, and combo's, no luck.

I don't go into Mayo until 6/1, so I have some time to worry about the sz activity and avoiding driving, worry about working, etc. until then. UGH!!

So sorry that this post is SO long! It's all just very complicated. Thank you for reading! Any words of encouragement would be greatly appreciated.

[eskielover]

Ah, Shezbut,

I am so sorry that you are going through such a difficult time with your E & all the sz's. You have gone through so much & for awhile things were looking up. Just praying that these new tests will show up something important that they can take care of & figure out a better solution so you can have your active life back.

I know the not driving situation. My mother had poor eyesight (not legally blind) & never drove. It did limit what I was able to do & be involved in when growing up until I could get my own license.

I just really hope that they will be able to find the cause for the activity that's going on in your brain & come up with a solution so that you are able to have your life back to a more normal condition.

Sending you many 's & & lots of caring thoughts.

[shezbut]

TY eskielover!

I do appreciate your hugs, hopeful thoughts, and thoughtfulness. I hope that things go okay too!

Two of my grandmothers never drove ~ both either relied upon the bus or rides from others, and I remember thinking "how strange" when I was a child. Fortunately, my grandmother's didn't have any disabilities at that point of their lives, they just never wanted to be behind the wheel. That was the strange part to me, that they had no desire to drive.

(((shezbut)))

I suffer from partial complex seizures and am also taking Depakote. My seizures are few and far between but they always have bad consequences. I don't like to drive since E also makes me slightly dyslexic. My triggers include lack of sleep, anxiety / nervousness, alcohol, sugary foods and lights shining in my eyes.

For several years, I was off medication and healthy provided I got enough sleep and watched my diet (including alcohol intake). Recently, when I took a job working nights, the seizures returned and I went back to the neurologist. I was put back on medication and quit my night job.

The first medication I was prescribed was Keppra. It was quickly dropped when one of the side-effects - drowsiness - caused me to dose off the second day of a new job. I immediately asked to be put back on Depakote. There are some problems with Depakote - I can only tolerate a low dose because it increases my appetite and I have gained weight in the past. On the good side, it is also a mood stabilizer and helps those like me (and you) who also suffer from depression.

Anti-seizure medications, as I have found, are meds that can also cause seizures when not administered properly. I had forgotten this with the Keppra. I have a hard time with upping and decreasing doses of anti-seizure meds and have to do both very gradually. My prior neurologist had me change meds quickly and I suffered seizures because of it. My current neurologist had forgotten this about me and had put me on a low dose twice a day of Keppra and the side-effects were too strong. This was not repeated with the Depakote. While the dosage was twice a day, I was started on one pill every other day which was gradually increased to one pill everyday and then further increased to the full dose of two pills a day. In this way, I was able to avoid the side-effects and seizures sometimes caused by the shock to the brain / system by going full dose from day one. I was also advised not to start a new job until my body had adjusted to the new medication. So far, so good though I still get drowsy. My neurologist says the drowsiness will eventually decrease. (It immediately increases with just a little wine, however.) Now that I am on Depakote, I will also have to go for regular blood tests to make sure my liver is not being affected by the medication. Like yourself, I also suffer from near constant ringing in my ears.

Please consider the gradual method when starting / stopping any anti-seizure medication. Please make sure you get a good nights sleep daily - that's the best prevention method for me. I am sure that you are familiar with your triggers. I don't know the ages of your daughters but, if they are old enough, please teach them what to do in an emergency. It is terrifying to lose both hearing and sight. I know that just the thought of knowing that your mind / body can surprise you at any time with unpredictable behavior is scary. E is so difficult to live with. I hope this helps and wish you all the best.

((((shez))))

Sounds really horrid and awful, My cousin has epilepsy too and also her 2 sons have it and I know how terrible it is, One of her sons wears an helmet as he has countless seizures

I really hope that you will be ok, Thinking of you

[ECHOES]

I'm sorry this is happening to you. I hope you get some really good answers when you go to the Mayo on the 1st. Possibly they can do another surgery, like the first one. I'm surprised to read that you had it done in '06, because I just heard of it last year. A family member was tested, but is not a candidate for the surgery.

The brain is amazing, and sometimes a real pain in the tush!

[shezbut]

Echoes, your post made me laugh.

"The brain is amazing, and sometimes a real pain in the tush!" Soooo true!

I'm sorry to hear that your family member wasn't a good candidate for the surgery. Hopefully, they didn't have to go through the intracraneal testing to find that out. THAT would suck, imo! Did he/she have a vagus nerve stimulator implanted, to help prevent sz's from generalizing?

I'm in the 33%ile in which no serious pain medications work. A whole third of people who have this painful brain surgery get no pain relief whatsoever, and it lasts for 3 months! That was really rough for me. It was, by far, the most physically painful thing I have ever experienced. So, I would not want to do another brain surgery if I don't have to. No thank you! LOL!!

I'm trying to hope that they'll just play with my meds, while I'm hooked up & safe in a hospital.

[shezbut]

unhappyguy,

I really appreciate your knowledgeable and understanding post back to me ~ thank you!

It's hard to believe that so much time has passed since I was on these AED's. I had forgotten about major cotton-mouth and things like that. Of course, I wasn't on any other medications back then either. Now, I take a long list of different pills daily. That might contribute too, huh?

Did you ever go through a time in your epilepsy when you could have sworn that you were psychic? I mean, you were 100% convinced. Something to do with dreams ~ I had one this afternoon, and I could not wake up, even though I knew that I was dreaming. That's where it gets really weird. My logical side is saying that makes no sense. My emotional side is saying that I seriously remember having this same dream 25-30 years ago and that proves that I am psychic after all! Do you remember ever going through this? My parents didn't believe me way back when (surprise! ), but now I'm starting to confuse myself by going round and round! Does this ring any bells for you? I'm not sure if it's seizure activity, delusions, or something else....

Hope you're okay today!

[ECHOES]

My family member had a series of tests, and evoked seizures, to see what part of the brain the seizure activity was occurring. The results were actually inconclusive, so he remains on sz medication. He had been sz free for many years, then they returned.

I didn't know it was so painful !! ouch! I wonder if they've improved it any in the last 6 years?

[shezbut]

Thanks for responding to my post Kittyclaws,

I'm sorry to hear that your cousin has the genetic type of E. That type is pretty rare ~ it must be so tough to have E and have 2 kids with E on top of it! Wow!! Hopefully, they are involved in studies to help scientists understand and treat sz's better for all of us. Thank goodness for the better helmet protection nowadays. I hope that your cousin and her sons are able to gain better control over their sz's! Best wishes to them.

I really ought to remind myself of how it could be more rough every now and then, to be more appreciative of what I do have.

Thank you!

[shezbut]

Originally Posted by ECHOES

I didn't know it was so painful !! ouch! I wonder if they've improved it any in the last 6 years?

Well, the other 67% are entirely free from pain from the medications, that's the wild part imo. I had a friend who had her surgery 1 month after mine, no physical pain whatsoever (just the emotional impact of the surgery, which was significant as well). I also knew a couple other people online, who had gone through the surgery and didn't have the skull pain. { Oh yeah, I forgot!All who've had the temporal lobectomy had incredible jawpain though. Because the jaw is broken for the surgery & it takes 5-6 months for that pain to disappear.}

At that time, researchers did know about that 1/3 who's pain couldn't be controlled in any way. They didn't know why, or even have any hypotheses (none were shared with me anyway). If it were to get to that level again, I'll definitely ask if they've come up with new ways to manage the pain since my last time!

[eskielover]

I ended up with migraines 24/7....it's like having a permanent migraine & they have no idea what the cause is. I never had even a headache before being put on anti-depressants that had the side effect of migraines.

According to my pain specialist, I am one of the lucky people with migraines where pain medication helps completely. He said in the pain specialist world, it's a known fact that narcotic pain medication is not usually a treatment that even helps with migraines for some unknown reason.

Maybe the same situation you are talking about...with those who get no relief from the head pain after the surgery vs those who do.

I can only imagine what horrible pain you must have experiences with how bad my migraines were without relief.

Praying that the Dr's over these last years have become more knowledgable about what they see when they do your tests.

Originally Posted by shezbut

unhappyguy,

I really appreciate your knowledgeable and understanding post back to me ~ thank you!

It's hard to believe that so much time has passed since I was on these AED's. I had forgotten about major cotton-mouth and things like that. Of course, I wasn't on any other medications back then either. Now, I take a long list of different pills daily. That might contribute too, huh?

Did you ever go through a time in your epilepsy when you could have sworn that you were psychic? I mean, you were 100% convinced. Something to do with dreams ~ I had one this afternoon, and I could not wake up, even though I knew that I was dreaming. That's where it gets really weird. My logical side is saying that makes no sense. My emotional side is saying that I seriously remember having this same dream 25-30 years ago and that proves that I am psychic after all! Do you remember ever going through this? My parents didn't believe me way back when (surprise! ), but now I'm starting to confuse myself by going round and round! Does this ring any bells for you? I'm not sure if it's seizure activity, delusions, or something else....

Hope you're okay today!

hi, shezbut. no, i have never believed that i was psychic. but, there have been things that were strange and unexplainable and that gave me a weird feeling about myself. yes, i have had some dreams that i seemed to have had previously. they were like dreams of dreams and, while i was sleeping, they seemed so familiar - like reruns in my head. i did not know what to make of them. i never discussed them with anyone. my approach was to try to figure out what my subconscious was trying to tell me. also, i have had dreams where it seemed that one arm was significantly larger than the other and other body parts were also out of proportion. when i woke up, the physical changes seemed like they had really happened. there is definitely a disconnect from reality when one has E. not a psychic feeling but a surreal one for sure. kinda made me feel special as if i was tuned into something almost supernatural. when i first met with my neurologist, he gave me a history of E. turns out, hundreds of years ago it was believed the people with E had supernatural connections or powers. now, of course, i know it's just a disease.

i pray you are okay.

[Rose76]

The complication of managing seizure disorder is way more of a challenge than I realized. Your situation sounds exceptionally tough. It does sound like your are getting high quality medical care.

I had a younger sister who lived 11 months with a seizure disorder. She passed away as an infant. I was old enough to take care of her and often did to help my mother. I can still remember dissolving the phenobarbital pill in a little spoon of water. It is striking to me that this same med is still a staple in reducing seizure activity. I can remember that the unpredictability that comes with this problem created so much stress for my parents and me, too. Mainly, I guess I want to say that I understand the deep powerful yearning that is felt to get the problem controlled so life can feel more normal. Then there is the disappointment when interventions don't seem to help as hoped for.

It's got to be so tough to have E and major depression. I wonder if the first is a factor contributing to the second.

Shez, you have been through so much, yet you seem to have a positive focus, despite the depression. You share pics with me that make me smile. It is good to see you around here at PC. You are a good presence for me, and lots of others, I'm. sure. I send you (((((HUGS))))) and I am glad that you come here to share with us. I like learning, from your firsthand experience, how various medications can impact you. It is good that you are accessing a first rate medical facility. I'll be watching your progress and hope you get some stability soon.

[notablackbarbie]

((((shezbut))))<<<as gently as i can.

((((Rose76, unhappyguy, eskielover, and all others that can relate))))

I will also try to keep you in my thoughts and prayers too. So sorry that you have suffered so much with epilepsy. I have worked with a couple of children in the past who had seizures - there does seem to be A LOT involved. Did feel for the parents who had to keep on top of all possible triggers and medications so their children could function, live, and enjoy more with less pain/fear/anxiety/trauma...

[ECHOES]

Thinking of you, shezbut!