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My name is Jeff, and I look forward to being a part of this community.

My story. Around age 13, my family and I were getting ready to move out of state. My parents had not returned home yet, leaving my brother and I to our own devices. We were watching tv and I didn't feel right. I went to lay down. When I woke up I tried talking to my brother and apparently what I thought I was saying was not coming out correctly. I was speaking jibberish. He freaked out and I had no idea anything was wrong. He just had me go lay back down. We ended up blaming it on a fever.

We finally get moved and as life continued on, I started getting what I now know are auras. They would last for 30sec to 3min. They freaked me out, but I learned to deal with them. I would go to psychiatrist per my parents request, and the Dr's would say that I was having panic attacks. I was prescribed drug after drug for many years, to which of course none of them helped my issue. The auras would hit me sometimes 10+ times a day. I just became used to them.

Fast forward to 2006. I still have my auras, no big deal, but waking up to a pillow covered in blood was new to me. I bit my tongue in my sleep. I do not know how that happened, but I found an excuse to blame it on. So now I have auras and occassional blood on my pillow. Okay, we can get used to this too. I guess.

Now to 2008. On my way home from eating out. Almost home, but stopped by a traffic light. Next thing I know, I am down in a ravine sitting in a totalled vehicle. Okay, need something to blame. Spiked drink or food poisoning?

Still unaware that I have siezures, I just keep dismissing things. I constantly have a sore tongue, bloody pillow and auras. And they seem to be getting worse. As I was driving at work, the last thing I remember is going over a set of rail-road tracks and then darkness. I woke up to a paramedic holding my head to the back of the seat, a broken telephone pole, and airbags deployed.
I blamed it all on beer. So, needless to say, I quit all alchohol.

I told this all to my wife, which was my girlfriend at the time, and she said that I should make an appointment with my Dr, and these are not panic attacks. She called the Dr that said they were panic attacks a few choice words, but I am sure you understand.

Since then I have been to the University of Indiana Hospital for research. They saw seizure activity, and between them and the local hospital, the told me I have epilepsy. I was put on tons of medication, but to no avail.

We then went to the Mayo clinic. I had a grand mal siezure in the hotel room before I was even admitted to the clinic. They found that I have temporal lobe epilepsy on both hemispheres of my brain. Great huh? With all the current meds prescribed by my neurologist, they still could not shut down my siezures. I recently opted to get a VNS, and I am regretting it. I would really like to hear your opinions.

Thanks for having me!
Jeff
 
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Hi Jeff, you've come to the right place. :) Lots of friendly, helpful folks around these parts.

Wow, you've been through a lot! Atleast now you've finally got a diagnosis.

I'm sorry you're not getting any seizure control. Don't give up hope.

***hugs***
 
Thank you Cathy. My grand mal seizures are few and far between, and for that I am very happy with that. This VNS device is bothering me however. Voice is gone, can't sleep, trouble breathing and it is not even turned on yet. lol. The Mrs told me she didn't want me to get it after the fact. Great! This seems like a great place to be and I hope to be a help as all of you are. I finally found a home.:)
 
Jeff, you're very welcome.

Try making a thread about VNS, you're sure to get a few hits.
 
Hi, I want to welcome you.

I am sorry for all your are going through

Is the meds. that you are on now having any effect on your seizures?

It has always taken two meds. to control my seizures.

I have TLE on the right side.

I have learned so much from the people on this forum.
 
Man that's tough to go through life not knowing what was wrong.
Well your here and what a great bunch of people they are.
 
Thank you all for such a warm welcome. (Jyearta) I am currently on dilantin, vimpat, and lamictal, and I have the vns implant. With the 3 drugs I was still having 10-15 tonic clonic siezures. I ran thru all the other medications like Kepra and Neurontin, etc. The 3 I am on now have been the only ones to make any difference. The implant is the last stab in the dark. However, they told me of all the possible side effects. I just was not aware that I would have so many of them. lol As long as I can keep away from a grand mal, I doing okay.
 
Hi Jeff,

Welcome to CWE. It sounds like you sure have been through a lot.
I have been on 3 of the meds you have mentioned, I am currently on Tegretol & Keppra but have also tried Lamictal, Topamax & Neurontin. None of the meds helped control my seizures so I ended up having brain surgery on my left temporal lobe in 2011 which so far has helped control the seizures.

I don't know a real lot about the VNS so don't know about any side effects that come with it but I assuming that it may take a little while to adjust to the VNS & get the settings right before your seizures are controlled.
There are a few other members on here who have had the VNS so I'm sure they will be able to give you some more advice & tips.
 
I love your avitar! The Dude! We are close in location as I am in South Bend. Just up 31 a bit. Sounds like you have been through a lot of suffering. With hope, your implant will start to help you out. You have come to the right place. There are so many people here to talk with and share. You will feel right at home. Best of luck to you!
 
Again, thanks to you all for the warm welcome. As I get farther along I intend to start a thread to document it all as I go thru this treatment. I want those who have yet to get the implant know how it effects your life. 2 weeks in right now, it is not turned on as of yet. I meet with my Dr in a week to have it turned on. We shall see how it goes, and I, like I said will keep a log here. So far it has been very life effecting on the negative side. We shall see! lol
 
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