One Day I Will Be Seizure Free!

OrganizedChaos, LVN · Jul 6, 2014

I had "fainting spells" for years then episodes of "deja vu" starting in middle school before I was diagnosed with a seizure disorder secondary to a large temporal lobe brain tumor my senior year of high school. I was actually quite fortunate in that my seizures had a focus in the right temporal lobe, the location of my tumor, and that my left side was dominant for verbal memory. Had surgery on May 28, 2003 and have been seizure free since. Off all meds since October or November of that year- my choice, not my neurologist's. I briefly went on Topamax for headaches in 2010 but it causes me to develop renal tubular acidosis and, once the diagnosis was confirmed, I decided I'd rather deal with headaches than have long term kidney and bone problems. Within a week of stopping topamax, my labs normalized.
I had a specific genetic mutation (BRAF V600E) that caused my tumor. This specific mutation is known to play a role in the development of several cancers. And though I'm told that the mutation was present in my tumor only and that it's not something that would be passed on, I'm not so sure I'll ever choose to birth children of my own. My experiences with MA DCF refusing to remove children from unsafe homes because of "nowhere to put them" makes me think that maybe one day I'll want to be a foster mother.

I'm glad to hear you're off meds! Whether you decide to have your own kids or foster I'm sure you'll be a great parent!

KelRN215, BSN, RN · Jul 7, 2014

I'm glad to hear you're off meds! Whether you decide to have your own kids or foster I'm sure you'll be a great parent!

It took years before my Neurologist acknowledged that I did the right thing by self-discontinuing my meds. Zonegran made me a walking zombie... I slept like 17 hours a day, it made me depressed, it made me anorexic. After I had surgery, I remember my surgeon telling me that my Neurologist "always" kept patients on meds for 5 years post-surgery. I took my meds religiously every day, as ordered, prior to surgery and I STILL had seizures every single day despite therapeutic drug levels. When I stopped taking them, they made me go to a psychiatrist. After I explained myself to him, he looked at me and said "so do you think that the meds wouldn't stop you from having seizures anyway?" And I was like "well they didn't, so precisely YES." I didn't see the point in taking meds that caused horrible side effects but never helped me. I was 19... one doctor tried to call my mother behind my back, fortunately I heard the message on the answering machine before she did, and I flipped out on him. Now I just go for annual MRIs and I don't even see a Neurologist anymore... they all just wanted to keep putting me on chronic meds for headaches and, after the topamax incident (5 doctors and 11 months before anyone finally believed me that it was obviously the cause of my hypokalemia and acidosis), I didn't want to take any medications that weren't absolutely necessary. I started doing monthly massage about 3 years ago and that has made a bigger difference in my headaches than ANYTHING I'd ever tried in the past.

OrganizedChaos, LVN · Jul 7, 2014

Wow. I can't believe all of that. Some times it boggles my mind what people in the medical community do & say. It's so insulting to those of us who are really sick.

But I'm so happy to hear that you are off all meds. I wish I could be there one day. But since I don't think I will ever find out what caused my seizures, I will always be on meds.

tokmom, BSN, RN · Jul 7, 2014

We ALL worry about our children. We ALL feel that we are not the best Mom's....job hazard I guess. We ALL worry...it's normal. I have an auto-immune disorder that attacks my muscles and now I have to depend on my children for many things. Their life has changed because of me...and I hate it.
But they love me. No matter what they still love me. Somehow through it all they love me. They think I am the best Mom ever because I'm their Mom...flaws and all. Somehow that makes it all ok.
((BIG HUGS))

Because children are selfless individuals. Even though my husbands health has radically changed our lives, the children love him unconditionally.

OrganizedChaos, LVN · Jul 13, 2014

Because children are selfless individuals. Even though my husbands health has radically changed our lives, the children love him unconditionally.

So I had been having a lot of seizure activity, my last one went on for 45 minutes. My husband called the ambulance, I was transported from my local hospital to a larger one in another city.

Once at the second hospital they just gave me Ativan & Haldol. Least to say I don't remember a think from that night.

I was eventually transferred to a speciality hospital & put on a 24 hour monitoring EEG. The doctors said they did not find any evidence of seizure activity, that it was all stress related.

Now I need to manage my mental health better. HALLULAH!

I wish everyone out there suffering from epilepsy an end.

NurseGirl525, ASN, RN · Jul 20, 2014

I also have epilepsy and am starting nursing school next month. I have been seizure free for 3 years now. It was a struggle to get here. I had years of uncontrolled seizures. I did 500 mg of Topamax a day and I had horrible kidney stones from it. When I became pregnant with my son, I didn't know until I was 10 weeks along. I was on Topamax the entire time. I was so scared I had done something awful to my child. My doc switched me to Gabatril while I was pregnant but I still had seizures. We put me back on the Topamax after he was born so I didn't breastfeed. I was ok with that as I knew how much of a zombie I was on that much medication and didn't my child to be that way. I found a new neurologist who tried everything in the world to try and control my seizures. I almost died in 2009 from a horrible grand mal seizure where I hit my head and neck so hard I got a blood clot in my carotid and then a PE in my left lung. I spent 3 months in the hospital that time. I was close to death. I had to be resuscitated twice while in there. Then I was told about the epilepsy clinic at IU. I got in and saw a wonderful doctor. She admitted me immediately and did a video eeg. She caught my seizures and put me on Neurotin, a low dose of Topamax, and Keppra. It worked!! Been seizure free for almost 3 years and am doing very well. My family doctor told me I have made the most amazing turn around he has ever seen. He said he honestly didn't think I would be alive right now.

I pray for all of you to someday be seizure free!! Epilepsy is very difficult and almost destroyed me. But it almost made me stronger. It made me the person I am now. Don't ever give up!! I hope you can all get to where I am!!

tokmom, BSN, RN · Jul 21, 2014

Kudos to you!!! What a story!

I find the most frustrating part of seizures is the drug manipulation it takes. My husband had been on countless now with no control. I also get tired of the lack of understanding from the medical community. If a seizure doesn't consist of normal tonic/clonic movement, then the person is faking.

tokmom, BSN, RN · Jul 21, 2014

So I had been having a lot of seizure activity, my last one went on for 45 minutes. My husband called the ambulance, I was transported from my local hospital to a larger one in another city.
Once at the second hospital they just gave me Ativan & Haldol. Least to say I don't remember a think from that night.
I was eventually transferred to a speciality hospital & put on a 24 hour monitoring EEG. The doctors said they did not find any evidence of seizure activity, that it was all stress related.
Now I need to manage my mental health better. HALLULAH!
I wish everyone out there suffering from epilepsy an end.

How can stress cause activity unless a person is susceptible to seizures?

I do think when my husband is stressed around his seizure times (every 3-4 weeks), they are worse.

OrganizedChaos, LVN · Jul 21, 2014

@Heathermaizy What a story!!!! Wow! Wow is all I can say. But it's great to hear you found a great neurologist & made a great recovery!!!

@tokmom I still have epilepsy as evident when I had a seizure when I got home & all the twitching I'm doing. Unfortunately my neurologist appointment isn't until September. I know it isn't due to stress but because of lack of sleep. I try taking Benadryl to sleep. But I don't have trouble going to sleep but staying asleep.

NurseGirl525, ASN, RN · Jul 22, 2014

Thank you so much guys, I just kind of teared up a little. I don't know very many people with epilepsy and when I try to describe to people what it has been like, they don't get it. They don't get how hard it is to control and why some meds work for some and not others. I try to explain but without a basic understanding of how the brain works it's hard.

I am so happy now. I have my drivers license again and I take diligent care of myself. My triggers are heat, lack of sleep, and extreme stress.

OrganizedChaos, LVN · Jul 22, 2014

Thank you so much guys, I just kind of teared up a little. I don't know very many people with epilepsy and when I try to describe to people what it has been like, they don't get it. They don't get how hard it is to control and why some meds work for some and not others. I try to explain but without a basic understanding of how the brain works it's hard.
I am so happy now. I have my drivers license again and I take diligent care of myself. My triggers are heat, lack of sleep, and extreme stress.

My triggers are lack of sleep & stress. I completely get trying to get the right meds. I thought I had been through a lot of meds. It's really tough with a newborn trying to get enough sleep but thankfully everyone loves him & is willing to take care of him. On top of that they know about my condition, my family especially, so they really jump in to help.

sharpeimom · Jul 22, 2014

My triggers are:

heat

elevated temp

hot flashes

extreme stress

being startled

strobing

lack of sleep

alcohol -- even the amount in mouthwash