One Day I Will Be Seizure Free!

sharpeimom · Jul 5, 2014

I have walked in your shoes. I have been epileptic since I was 13 months. I have simple and complex partial seizures. I don't lose consciousness, and can follow the conversation. I took Tegretol for years and it worked like nothing else had. All was well until I tried to become pregnant. I went off everything and the seizures returned with a vengeance. I became pregnant and my OBGYN and neurologist decided I could try the no meds idea for my first trimester.

I ended up being meds free until after delivery. The baby lived for almost six weeks, after being born with major deformities. I now take Keppra and Neurontin. I was told that the Tegretol could cause the baby to be born without eyes, which was scary.

After our baby was born, I was unable to nurse him, which broke my heart, but by then, I really needed to be seizure free so it was back on the meds. The baby was bottle fed donated breast milk, donated by friends and a breast milk bank.

I wanted to add my support but our story is not a cheerful, happy, upbeat one. I debated whether or not to share our story.

Sending many hugs.

OrganizedChaos, LVN · Jul 5, 2014

I have walked in your shoes. I have been epileptic since I was 13 months. I have simple and complex partial seizures. I don't lose consciousness, and can follow the conversation. I took Tegretol for years and it worked like nothing else had. All was well until I tried to become pregnant. I went off everything and the seizures returned with a vengeance. I became pregnant and my OBGYN and neurologist decided I could try the no meds idea for my first trimester.
I ended up being meds free until after delivery. The baby lived for almost six weeks, after being born with major deformities. I now take Keppra and Neurontin. I was told that the Tegretol could cause the baby to be born without eyes, which was scary.
After our baby was born, I was unable to nurse him, which broke my heart, but by then, I really needed to be seizure free so it was back on the meds. The baby was bottle fed donated breast milk, donated by friends and a breast milk bank.
I wanted to add my support but our story is not a cheerful, happy, upbeat one. I debated whether or not to share our story.
Sending many hugs.

Honestly it does help. It is tough, no one really understands it unless they are in our shoes.

I love my son like no other & sometimes I don't feel like a great mother. I really want at least one more kid. I know it would be best to plan it out & wait at least 2 years. But life happens.

I am so thankful I have such supportive friends & family. I think about what will happen with the next child & how I am going to juggle a toddler & being pregnant then a newborn. I know my mom will always help me & it would be best if I wait long enough to where my first can be in school, but I will see.

I also wanted to bridge to get my RN, but now I don't know if I have the heart to leave my son (even though he'll be one). So I might put off school a lot longer than originally planned. But honestly my kids are worth it. ☺️

Madras · Jul 5, 2014

Organized chaos and sharpeimom!!!!!!! ::HUGS::!!! I too was diagnosed with epilepsy at a young age. Grand mal is my poison. It is a life long struggle. I've been through many meds as well and thankfully kept my teeth in good shape after years on Dilantin. I've now been "stable" on trileptal for a few years. "Stable" because for the most part I'm "controlled". But night shift and stress from school the past few years and even forgetting my sunglasses for the day triggers me. I know without a doubt that I've had them in my sleep thankfully rather than middle of the day.

My pregnancy with my son was "rough". I was on depakote at the time and once we found out my neuro said ok let's try med free for the best outcome for baby. I spent about half my pregnancy at the neuro, neonatologist, ob etc and the other half on my living room couch fearing to even breathe wrong. I was seizure free the entire pregnancy, had a scheduled c section and thankfully my son was born healthy. He is almost 6 now and I thank god every day he is healthy but always fear that he will have some residual effect from my meds during the early stages. The one time he had a febrile seizure I was freaking out thinking THIS IS IT, it's happening! So worried he will one day have epilepsy (some research shows it may be hereditary).

well anyway. The day after he was born my body decided it needed meds! I went straight down tonic clonic hit my head and popped my incision. So back on meds forever again. It's hard to live like this wondering when it will happen again. I get auras so now I recognize when it's coming. I've had seizures everywhere! Work, school, BBQ's, you name it, I've had one there! Good thing I work in a hospital is the ongoing joke now. Now that life is fully settled in we're thinking about another little one. But I'm so scared to go through it again. I don't know if my body could handle pregnancy and 12 hour shifts.

Trying to stay positive!

one day I will be seizure free too!

Esme12, ASN, BSN, RN · Jul 5, 2014

((HUGS)) to you all.

CONGRATS OC on your baby boy. You are the best Mom ever. You love your son. You provide your son with what he needs to be safe. You give your son the best that you can.

Someday I pray for you to be seizure free

OrganizedChaos, LVN · Jul 5, 2014

((HUGS)) to you all.
CONGRATS OC on your baby boy. You are the best Mom ever. You love your son. You provide your son with what he needs to be safe. You give your son the best that you can.
Someday I pray for you to be seizure free

Thank you! It makes me feel better to know I'm not alone. I have grand mal seizures too & thankfully I get auras. Yesterday I felt something was off while I was holding my son so I told my husband to take him then I went to lay down. A little bit later I had a seizure, my mom came home & gave me a klonopin to stop the seizure.

But I feel the same way, I want another child but there is no way the stress from a child & 12 hour shifts I could handle it. But that is at least 2 years from now, but I like to plan & with how my epilepsy is acting with the first one it's better to try to figure it out now.

tokmom, BSN, RN · Jul 6, 2014

Hugs to all of you with epilepsy. My husband a former RN has uncontrolled partial complex (supposedly) that come every 25-35 days. He starts with a very rough voice, and throat clearing and within hours is jumping (yes, jumping up and down and yelling) for up to 18 hours at a time. These last for approximately 1-2 days then he is just sort of loud and twitchy. I swear we have done the gamit of meds with no real relief. Being a nurse myself, I know when he has word salad he will have a grand mal or a petit mal. Sometimes during the jumping he is confused for a couple of days and after a regular seizure he is confused for a few hours. He cant take 10 mg of valium and still be jumping and yelling all night long.

We have tried many different meds and currently he is on 3 with no real relief of symptoms. I swear, I think we have tried them all.

He sleeps poorly (I swear he has sleep apnea, because he snores like a bear) and I wonder how much of that plays into the seizures.

He obviously cannot work as a nurse, which is sad, because he was very good at what he did.

((hugs)) to all of you for living with such a frustrating illness.

OrganizedChaos, LVN · Jul 6, 2014

Hugs to all of you with epilepsy. My husband a former RN has uncontrolled partial complex (supposedly) that come every 25-35 days. He starts with a very rough voice, and throat clearing and within hours is jumping (yes, jumping up and down and yelling) for up to 18 hours at a time. These last for approximately 1-2 days then he is just sort of loud and twitchy. I swear we have done the gamit of meds with no real relief. Being a nurse myself, I know when he has word salad he will have a grand mal or a petit mal. Sometimes during the jumping he is confused for a couple of days and after a regular seizure he is confused for a few hours. He cant take 10 mg of valium and still be jumping and yelling all night long.
We have tried many different meds and currently he is on 3 with no real relief of symptoms. I swear, I think we have tried them all.
He sleeps poorly (I swear he has sleep apnea, because he snores like a bear) and I wonder how much of that plays into the seizures.
He obviously cannot work as a nurse, which is sad, because he was very good at what he did.
((hugs)) to all of you for living with such a frustrating illness.

I'm so sorry for your husband. Maybe if he cured the sleep apnea it would help his seizures. I know if I'm sleep deprived I'm more likely to have seizures.

It is very frustrating because sometimes nurses/doctors/people in general expect seizures to be one certain way.

In the first trimester of my pregnancy I went to the ER for shortness of breath. The triage nurse was SO rude, said what I was feeling was normal & so were my vitals. Well I was laying in the bed & BOOM! Out I went. I don't remember anything & my husband told me everything that happened. The ER staff thought I was faking my seizures but they gave me Valium & they wanted to send me to a psychiatric hospital. I don't remember a thing from that night.

tokmom, BSN, RN · Jul 6, 2014

Yes, that is so true and I really try to educate people that seizures don't always involve loss of bowel/bladder and tonic/clonic

He was admitted with the same jumping conditions and the continuous eeg showed abnormal brainwaves that were very slow, despite the fact his body was ramped up. His own neuro was on vacation, so we were stuck with the on-call. She took one look at husband and deemed him a faker and out for some monetary reward. Sadly that followed us around for a couple of years and shut the door on some of the best ones in Seattle. Finally a neuro psych did some testing and deemed him with a sz disorder, backing his neuro's assessment.

Every day I pray that the new medication will work, but when I see the twitching starting and the rough, gravel voice I cringe. the last time he jumped for 16 hours and I went to work (left an adult child home with him) on 90 minutes of sleep because the noise was awful.

How do you guys function and stay positive? I wish he would be tested for sleep apnea, but he is in total denial.

OrganizedChaos, LVN · Jul 6, 2014

Yes, that is so true and I really try to educate people that seizures don't always involve loss of bowel/bladder and tonic/clonic
He was admitted with the same jumping conditions and the continuous eeg showed abnormal brainwaves that were very slow, despite the fact his body was ramped up. His own neuro was on vacation, so we were stuck with the on-call. She took one look at husband and deemed him a faker and out for some monetary reward. Sadly that followed us around for a couple of years and shut the door on some of the best ones in Seattle. Finally a neuro psych did some testing and deemed him with a sz disorder, backing his neuro's assessment.
Every day I pray that the new medication will work, but when I see the twitching starting and the rough, gravel voice I cringe. the last time he jumped for 16 hours and I went to work (left an adult child home with him) on 90 minutes of sleep because the noise was awful.
How do you guys function and stay positive? I wish he would be tested for sleep apnea, but he is in total denial.

I am so sorry you & him have to go through all of that. That is extremely rough. I hope one day that some combination of drugs help him or maybe he gives in to getting tested for sleep apnea.

It is hard to keep my head up some times. I remember in high school/ early college I tried to be "normal" & drink only to end up in the ER numerous times.

Now that I have a son & can't take care of him on my own I have my moments where I get depressed & don't feel like a good mother. I really hope I don't pass my epilepsy on to my child. But the weird thing is, that no one on my family has epilepsy & no neurologist knows why I have it.

Esme12, ASN, BSN, RN · Jul 6, 2014

I am so sorry you & him have to go through all of that. That is extremely rough. I hope one day that some combination of drugs help him or maybe he gives in to getting tested for sleep apnea.
It is hard to keep my head up some times. I remember in high school/ early college I tried to be "normal" & drink only to end up in the ER numerous times.
Now that I have a son & can't take care of him on my own I have my moments where I get depressed & don't feel like a good mother. I really hope I don't pass my epilepsy on to my child. But the weird thing is, that no one on my family has epilepsy & no neurologist knows why I have it.

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))

KelRN215, BSN, RN · 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.