Yeah, I Have Epilepsy…So What? 38


epilepsy


Yeah, I Have Epilepsy…So What?


I’ve talked to a few people in the past about living with Epilepsy, and figured that it might be a good time to write about it here on my blog. I know that there are a lot of people that are living with it, and if it’s a loved one, sometimes you can’t understand exactly what they are going through. I’ve been praying regarding sharing this for some time, and now feel that God is leading me to write about what has happened in my life.  Hopefully, I can try and answer some questions that you might have if you’re in the process of dealing with it, or someone that you love is.

For those that don’t know, Epilepsy (also called Seizure Disorder) is the fourth most common neurological disorder and affects people of all ages. It is epilepsycharacterized by people having unpredictable seizures, and can cause other health problems. It is a spectrum condition with a wide range of seizure types and control varying from person-to-person.

My Mom told me that I had my first seizure when I was about 4 years old. They took me to the hospital and of course, the doctors asked if I had fallen on something, and checked if I had a high fever. None of these were the case. My uncle (Mom’s brother) had dealt with seizures in his life, but there was never a set medical reason behind it, or family trait, etc. I don’t know exactly what they did with me then, but I know that my Mom told me I took medicine for one year, and after not having any more, they figured that everything was fine. I no longer had to take medicine, and went on with my life.

I remember even when I was younger, sometimes having something like “ripples” on the outer parts of my vision. I thought it might have something to do with the seizures, but was told that is was Ocular Migraines (also called ophthalmic, visual and optical migraines). There was never any pain, it was just annoying. If you have never heard of this, or experienced one, it looks something like this (do you see the ripples on the outer edges?):


Now, fast forward to the age of about 16. I had another one, and once again, the doctors couldn’t pinpoint it. I was forced to delay even getting my driver’s license, just for safety reasons, in case I had another one. I don’t remember what medication I was put on at this time. I was forced to wait until I was about 16.5 or so, then I was able to get my license, and go on with normal teenage life. Well, if you could call it normal.

I never really talked about my seizure disorder with anyone at school, or outside of family. Back then, it was kind of having a feeling that if I told someone, they would think I was weird, or something. The times were a lot different (even only 25 years ago), with what people knew about certain medical conditions. I know that in today’s world, people still feel that way in a sense, but now with me being older…I couldn’t care less about what people think of me, due to having this problem. Getting older, can sometimes be a great thing! 🙂

I remember back when I had the one around age 16, the doctor told me that because of my epilepsy and prescription side effects, I would probably never have children when I got older. And, she said if by some miracle that I did, they would have either Down Syndrome or Spina Bifida. That was really a great thing to hear as a teen…NOT!!! :-p I would love to go back, and have a “talk” with that crazy woman. This really hurt me. For me, my ambition in life was to be a wife, and a mother (everyone at school thought that was a weird goal). Now, I’m being told that I might not be able to achieve part of that? I don’t think a doctor should ever tell you something like this, unless they are 100% certain!!

Now, a few years later at the age of 18, I remember driving home from work, and heading toward a red light. All of the sudden, I started to see something like this:


I would sometimes see something like this when I was younger, before I was about to have a seizure, as well as tasting something in my mouth that was like the smell of burning metal. Sorry, I can never really explain that one better, but that’s just what it was like to me.  Not sure where the smell came from, maybe it was just from the “wires” in my brain misfiring. :-/ The doctors called these “Grand Mal”, or “Tonic-Clonic” in today’s terms. When I had one, I would have to take a nap for a few hours, and it felt like I got run over by a freight train!! Weird what your mind can make your body feel like, huh?

Thankfully, when I was having this seizure behind the wheel, I was moving slowly and my foot was already over the brake. I just veered off of the road onto the curb, and came to a stop. Praising God now for not hitting any cars, or hurting anyone walking. This was back in 1993 or so, and I remember the fireman looking in the car window when I woke up, asking my name and who was the President…I think I told him Jimmy Carter or something like that. Weird!!

After that I ended up on prescriptions once again. They put me on Depakote, which ended up starting to mess with my liver, so I was changed to another pill. In just a few years, I was taking Trileptal, Topamax AND Keppra…15 pills a day!! The doctors told me that I would probably be on prescription medicine for my Epilepsy now for the rest of my life, since this wasn’t the first time that I had to deal with it.

epilepsyI met an amazing guy (now my husband) back in about 1992. I didn’t tell him anything about my problems at first, when we were dating. I remember I had a seizure when we were out together, and since I talked in gibberish, he wasn’t sure what the heck was going on. After I explained things, he was fine with it. I thank the Lord for putting such an amazing man in my life. He’s been there through everything with me, and keeps me strong. When things got a bit more serious between us, I had to tell him what the doctor had told me about children. He said that he was fine with that, and we would just adopt. Again, more points on the awesome board!

Low and behold, God decided to show that ignorant doctor who was boss. Back in the year 2000, I found out that I was pregnant. Of course I was very scared, wondering if the things that I was told would end up being true. I had some amazing OB/GYN nurses, and doctors that helped me through everything. They had me begin a high Folic Acid intake to help with the presumed birth defect chances, which I look back on now, and know that it helped! I was also asked if I wanted to have the Amniocentesis by the doctor, to see if there were any problems with the baby. Knowing that I had already been told that I would never have children, and the risks that were involved in having this test, we declined. I didn’t care if there were any birth defects, etc. We were being blessed with a baby, and no matter what, we would love them…with whatever we had to deal with. We even decided to go “old-school”, and not even find out if we were having a boy or a girl. Being able to be surprised would be fun. I was hoping for a boy, since my Mom had told me for years that if I had a girl, she would be payback for what I put her though – NO THANKS, NOT WANTED!!

Praise God – our son, DJ was born on December 20th, and we were so excited. There were some scary times when the doctors told us that he had been born with a cleft palate, thankfully in just the soft part of the top of his mouth (which was repaired with one surgery in 2001). This was due to some of the medication that I had been taking, and was a known risk associated with it. Thankfully, the folic acid helped to curb what could have happened. We also found out later that he had a dual-hearing loss in his left ear. This was something we were told that could probably never be repaired (with the options available today), but thankfully he’s able to hear well from the other ear, and can make do. We recently took him in to get braces, and the orthodontist told us that it looks to him that he almost had a cleft lip, as well. Once again…thanks to the doctor’s advice to take those vitamins for helping with that! We were able to stop something major from happening, and that is something I’ll be forever grateful for. I think when you’re told that you will never be able to have a child, and you are blessed with one…it really doesn’t matter if everything isn’t “perfect”, because to you they are!

So after he was born, like most of you Mom’s know…my body went through some “stuff”. Hormones go crazy, and like I said, I had already had issues before. It seemed that every “time of the month”, I would have a massive amount of seizures. I talked with my Gynecologist about it, and he said that it could be something to do with my body. My seizure amount used to run about 10 a month, focused mainly on that certain block of time. So in 2003, he decided to take me in for a hysterectomy. Doctors told me that with the minor problems that Dylan had, there was a greater chance of even more birth defects if we had any other kids, so we decided to be blessed with only one. Having that surgery was painful, and very uncomfortable. I didn’t have to have any outer incisions which was nice, but it also did not fix my problem. After healing, I ended up seeing a well know Neurologist in the area, that eventually had me go to UCLA for some neurological testing. They had me all “dressed up” in something like this (not me in the picture), doesn’t that look comfortable? :-p :

epilepsy

Since the Epilepsy seemed to affect me more when I was either very tired, or had been sick, they decided to perform a sleep study (which I don’t even know why they call it that, when you’re not even able to go to sleep!!), and after that found where they thought my seizures were coming from – the left frontal lobe.

Six (6) months later, I was scheduled for brain surgery. Talk about something that makes you worry!! I remember the doctor telling me that brain surgery to him was simple. Ummm…really?? Doctors had weighed all of the options, and of course told us about all of the possible side effects. I was told that the area where the surgery took place, was also near where your speech comes from. There was a chance I could lose the ability to talk, which I think I saw my husband cross his fingers for…just kidding!! It was also near the short-term memory area, and they said I might have memory problems, which I do. Now being a Mom, most of you know that we already deal with memory problems as part of life, but now at least I have an excuse! 🙂 Knowing all of the “what-might-happen”, we scheduled the time, and got ready.

I remember my in-laws being kind enough to watch our then 3 year old son, while my husband took me to the hospital. I’ll never forget going in that morning, and being prepped for surgery. We were sitting in the prep room, and I remember seeing my husband look super worried. We were told of the risks, and knew that the positive outweighed the negative, so in my mind it was worth it. I remember learning about people, that talked about hearing God in their life. I always figured that they meant a “vision” or a “thought” – you know “the voice in my head” kind of thing? Well, at that time in that room, I know the Lord spoke to me. I felt His presence, and heard Him say to me…”don’t worry, I’m here and you’ll be fine!”. I remember looking around the room, thinking that someone had come in and started talking. Nope!! That few seconds made me know that I was being watched out for by the Almighty. I became so comforted, that I was even able to comfort my husband who seemed a bit more worried about everything than I was at the time.

After I was wheeled into the operating room, I remember them doing the sleep medicine, and than making me do the “count backwards” nonsense. Right before I got to 3, I heard that crazy noise of what sounded like a Dremel revving up, when the surgeon got ready to cut my skull – that was interesting. They told us in the recovery room, that right after the doctor had removed the bone, and they were getting ready to go inside, hoping that they picked the right place to fix, I had another seizure – right then in front of them!!! The doctor said it was amazing, and after that he knew exactly where to go!! Ummm….sorry doctor, not amazing…it was God who did that!

After the surgery, there was healing time of course. And I’ll tell you, brain surgery isn’t even as bad as the hysterectomy. If you have the choice…just kidding!!

epilepsy

So now, 12 years later, I think I’ve only had about 6 seizures in that whole time. When I was younger, they called the ones I had Grand Mal (or Tonic-Clonic)…where you completely black out. The ones after the surgery were called Complex Partial seizures. With the ones now, I still can see what is happening around me, but I’m usually scratching with my right hand, and smacking my lips or talking weird. In my head, I’m saying exactly what I want, but it’s just not coming out that way. Drives me nuts!!

I can also feel when these are coming on. I get a really weird feeling that’s like a vacuum hose on the back of my head, pulling me in reverse really slowly. I then get that weird taste/smell and know that it’s coming. The ones now only last for a short time, and I’m back to “normal” in no time. No more having to sleep for hours, like years before.

I’m still taking 2 pills a day, which the doctor said that I would be on for probably the rest of my life. I’m fine with that. I don’t like the side effects of not being able to lose weight, and now dealing with chronic migraines as an effect from the brain surgery, but hey, I’ll take that over what I used to have to go through for sure!!

Again, I give thanks to God for being there for me, and my family. It’s amazing to look back, when you wondered why you had to go through something, and now see the reason. Being able to talk to people about what they, or their family members are going through, and trying to help is a great thing.

Do you have someone who is affected by seizures? or are you yourself? Let me know, and we can help blow the whistle on our “Epilepsy Train” of helping ourselves and others!

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More Information on Ocular Migraines:

Ocular migraines cause vision loss or blindness lasting less than an hour, along with or following a migraine headache. Experts sometimes call these episodes “retinal,” “ophthalmic,” or “monocular” (meaning one eye) migraines. This problem is rare. It affects about one out of every 200 people who have migraines. Some research suggests that in many cases, symptoms of ocular migraine are actually due to other problems. Diagnosing ocular migraine requires a health care professional to rule out other conditions that can cause similar symptoms. Being able to describe the symptoms properly is important for helping the doctor determine whether it is actually an ocular migraine.

epilepsy

More Information on Epilepsy:

Epilepsy is the fourth most common neurological disorder and affects people of all ages. It means the same thing as “seizure disorders”. It is characterized by unpredictable seizures and can cause other health problems. Epilepsy is a spectrum condition with a wide range of seizure types and control varying from person-to-person. Find out more, by visiting the links below.

epilepsyConnect With The Epilepsy Foundation:

Facebook

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You Tube

Website

Facebook

Twitter

Google+

YouTube

Website

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Disclaimer: I, Jamie Tomkins, own and operate TigerStrypes Blog located at www.tigerstrypes.com. From time to time you’ll hear about my real life experiences.  The information that I give regarding this is based off my own personal experience; I do not guarantee that your experience will be the same.  If you are having problems, I recommend talking to a Primary Care Physician and/or Neurologist

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38 Comments on "Yeah, I Have Epilepsy…So What?"

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[…] It’s one of the only OTC products that is safe for me to use. Being on a prescription for Epilepsy, I’m not able to take anything that has the “D”, or any Pseudoephedrine […]

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[…] I’ve tried a lot of things to help with this, but due to medication that I’m on for Epilepsy, it’s hard for me to ever lose weight. Plus, with having a hysterectomy at the age of 28, my […]

Sara @ finditfixitorbuildit.com
Guest
Thank you for sharing your story; it’s a very powerful one that I think will bring strength to many people. I have no doubt that the seizure during the surgery wasn’t just a coincidence. It always amazes me how many blessings and tender mercies accompany us through our trials. My sister has hemiplagic migraines, which bring a lot of the same difficulties. It started with an episode that looked like she was having a stroke (lip drooping, non-sensical speech, etc). Half of her body will completely “lock up” sometimes without much warning. The most uplifting thing about it all has… Read more »
jill
Guest

This is so similar to my own story! First seizure at 10 months,no major problems until 16, no driving, seizures happened around period, brain surgery in 2003, two kids, still on Keppra, seizure-free for almost 9 years!

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[…] my child would be born with Spina Bifida or Down Syndrome due to medications that I had been on for Epilepsy.  Doctors told me this at the age of 16, which scared the heck out of me.  When my husband and I […]

Martha
Guest

Such an amazing and helpful blog. I’m sharing with many I know that this may enlighten them more.

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[…] Jamie’s blog went down last weekend, so she’s re-sharing her personal story of Epilepsy […]

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[…] Jamie’s blog went down last weekend, so she’s re-sharing her personal story of Epilepsy […]

Audrey
Guest

Good for you for sharing your story.

I hope doctors today are being trained to keep their mouths shut before pronouncing doom and gloom. This is the second story I have heard recently about negative nelly doctors being proven wrong.

#HomeMattersParty

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[…] Jamie’s blog went down last weekend, so she’s re-sharing her personal story of Epilepsy […]

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[…] Jamie’s went down last weekend, so she’s re-sharing her personal story of Epilepsy […]

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[…] Jamie’s blog went down last weekend, so she’s re-sharing her personal story of Epilepsy […]

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[…] Jamie’s went down last weekend, so she’s re-sharing her personal story of Epilepsy […]

Kristy as Giftie Etcetera
Guest

Thank you for this post. My 7 year old has epilepsy. I write about it on my blog sometimes. It has changed our lives.

Living with epilepsy is not easy on anybody. I always wonder what it will be like for him in his teen years, so this insight helps. (Of course, I understand that every case is different.)

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[…] Read about Jamie’s personal journey with Epilepsy […]

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[…] Read about Jamie’s personal journey with Epilepsy […]

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[…] Read about Jamie’s personal journey with Epilepsy […]

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[…] Read about Jamie’s personal journey with Epilepsy […]

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[…] Read about Jamie’s personal journey with Epilepsy […]

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[…] Read about Jamie’s personal journey with Epilepsy […]

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[…] Read about Jamie’s personal journey with Epilepsy […]

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[…] Read about Jamie’s personal journey with Epilepsy […]

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[…] Read about Jamie’s personal journey with Epilepsy […]

Brandyn
Guest

Wow, what a touching story! I can’t imagine what it must have been like to go through all of that..let alone go through brain surgery! It’s so wonderful that you were able to find solace in your higher power through it all and I’m so glad it all worked out so well!

Thank you for sharing with us at #mommymeetupmondays!

Heidi Bee
Guest

Thank you so much for telling your inspiring story. You have been through a lot but have handled it with Grace. Praying that everything continues on this path and it continues to give you more relief. Will be sharing!

Laurie Rask
Guest
Jamie, I am so proud of you for doing this! I never knew all of this, and it just makes me love you even more. It takes guts to step out and lay bare your health issues, but I think if you help even one person it is totally worth it. Despite the fact that I don’t have epilepsy, I was struck by the similarities in our stories…chronic health problems, the devastation of enduring a hysterectomy that DOESN’T fix things, living with invisible illness, but most importantly how the grace of God has gotten both of us through! Thank you… Read more »
Jill
Guest

Wow! I can’t believe how similar this is to my story! A seizure at 10 months old due to a high fever; on medicine for about a year,no seizures and they took me off. No seizures until my junior year of high school…was almost 18 until I got my license…on all kinds of meds and combination of meds. Seizures happened around my cycle. Had brain surgery on my right temporal lobe in 2003…seizure free, except during pregnancies in 2006 & 2008.2 healthy kids,no seizures, still on Keppra.

Shecki @ Greatly Blessed
Guest

Thank you for sharing your story!

One of our boys has epilepsy. It’s currently under control with medication.

I remember when I was a kid, one of my mom’s friends found a prescription bottle for dilantin (?) at the home of the guy she was dating. My mom asked a paramedic friend what it was for, and when they found out it was for seizures, they acted all weird about it. She stopped dating him. I can totally see not wanting people to know, with reactions like that!

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