hey. :)

[The Mathematician]

I apologize for how long this is. I hope it's worth the read, lol.

Hey, I'm Randall, a 20-year-old college student majoring in mathematics. I have been having difficulty dealing with my epilepsy lately, and I came across this site via a Google search.

I had my first tonic-clonic seizure this past April. Since then I have had seven more. The first medicine I was put on was Keppra, but I was eventually taken off of it because of it's side effects (primarily depression - it was really difficult to deal with). I was then put on Zonegran (sp?), which completely messed me up. I couldn't focus on anything, I had little mental function, I was depressed again, and I even had hallucinations. After that one I switched to a third medication, Lamictal, which is the one I'm currently taking. The side effects for this one have been bearable thus far. I do have mood swings, minor hallucinations (minor, as compared to the previous ones), lowered mental function, and a terrible memory. I know all of that may sound a bit much... but I imagine many people have experienced worse side effects.

All three medications have prevented my seizures (at the right dosage). The problem I have is dealing with the side effects.

Also, I have been experiencing something very strange that started about a month ago. When it first started, my vision would move very quickly in a horizontal direction, back and forth. I looked it up online and determined that it was nystagmus, probably a side effect of my medication. Over time, though, my little vision spells worsened. Now when they happen (I had it happen today actually), not only does my vision move uncontrollably from side to side, but I also get very dizzy and almost completely lose my sense of equilibrium. I also feel nauseated, and I experience a sensation in my head and upper half of my body that I can only describe as a tingling feeling. This feeling is different though, it isn't quite as sharp as tingling. These spells have been occurring more frequently and last much longer (they happen about every other day and last for at least 15 minutes). I think it may also be important to mention that my eyes themselves don't actually move, only my vision does.

I told all of this to my neurologist. He thinks I may be experiencing some kind of smaller seizures. He wants me to have a 72-hour EEG, so I'm currently waiting on that.

All of this has been very difficult. When I first started taking pills for epilepsy, I thought it wasn't really a big deal and that all I had to do was take a few pills everyday and everything would be fine. This narrow-minded, uneducated view of epilepsy was quickly reformed into a more accurate one. Experience is a great teacher. The biggest problem I have with all of this (apart from the seizures themselves) is how it affects my mind. I am doing very well in school and I have plans to become an actuary. But epilepsy has significantly lowered my cognitive abilities. I've dropped two classes this semester because of my epilepsy and its effects on my mind. I just can't think the same. I almost feel like an entirely different person now.

I'm hoping this 72-hour EEG will help. It's the only test we haven't ran as far as I know (everything else came out okay... although I'm suspicious of the accuracy of my original EEG). If this EEG doesn't help, I really don't think I have anything left to help. And not being able to think as I did before will greatly hinder, if not ruin, my college career.

As you can see, I'm rather pessimistic about all of this... I don't know how else to react. Everything has gone downhill since seizure one.

As an ending note, I think it's great what Stacy and Bernard are doing here. I want you to know that I acknowledge all of your hard work, and I (among many, no doubt) greatly appreciate it.

Thanks for reading.

-Randall


(I really like this smiley, so I had to post it, lol)

 

[Nakamova]

Hey Randall, welcome!

Yup, seizures suck and side effects suck. Not much of a choice, but there are alternatives like neurofeedback and nutrition to consider. They won't necessarily work for everybody, but they are definitely worth a look:

http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments
http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/

I hope the 72-hour EEG proves helpful. Has your neuro indicated how the results might change your treatment?

Best,
Nakamova

 

[epileric]

Welcome Randall

Good to have you here. At least there's good company on this site.

Also don't feel bad about being pessimistic. It's when you expect the worst that things are more likely to get better. Optimists have it pretty hard that way.

 

[RobinN]

Hey Randall - Welcome

Some of what you write about, my daughter experienced too.
She had vision problems with her first med. Most of the time it came about when she got up quickly. Other times it just occurred. It tended to happen only with this med. After being off of that med for about a month, she had no more problems with her vision. We then tried another med, and we dealt with suicidal tendancies, so that was not acceptable. Then two more with side effects that were worse than the seizures she was having.

The medication definitely made her seizures worse. Plus she had weird ones that she has never experienced since she has been off of meds. I learned that seizures are a symptom. My daughters issues all pointed in the direction of the GI system, nutrition, and making sure all the internal organs were working at their optimum. I figured she had been doing fine for 14 yrs of her life, and I wanted to find a way to raise her seizure threshold back up again. Did you know we all have a seizure threshold. I did not know that when I began this journey with my daughter.

So we worked with neurofeedback, and at the same time.... nutrition.
The seizures continued, but then they were slowly fewer and fewer apart.
It has now been 6 months seizure and med free.

I believe so strongly that nutrition plays a role in neurological health. There are many other causes, but nutrition is central to each. Worth trying IMO.

 

[Meetz1064]

Hey there

Randall, how's it going?

Yup, the seizures suck, and so do the side effects. And I absolutely CANNOT tolerate Kepprea either. Not for the same reasons--mine were a bit bizarre--but still.

As for the nystagmus--I do have that as well. And yes, you may very well be having more seizures. My doc does keep an eye on my nystagmus every so often, using a test called the VENG. Right now, I can't begin to remember what the acronym stands for, but it can be an interesting test at times....

My nystagmus is here to stay, unfortunately. It's not going away. :S

Welcome to CWE, by the way. I'm sure you're going to like it here. Tons of great people., lots of information as well as nooks and crannies to explore. Mr B, our host, has built us an AWESOME home here, and the dinner party is doing just fine, thank you.

Sit back, kick up your feet, and enjoy yourself. pipe up when you feel like it. And trust me, we'lll be here for you when you need it.

Take care!

Meetz
:rock:

 

[Endless]

Hi, Randall,

Welcome to CWE!

Seizures do suck. So do the meds. I wish I had a magic wand and could wave it all away for you. You are being really brave keeping up with school. You will be an actuary. It may just take a little more time to get there.

I was on Keppra for a short time and was taken off due to anger and depression, among other things. Now several drugs later I'm on Lamictal. Lamictal is supposed to be the drug that messes with your cognitive function the least. But people all react differently to the different drugs. In some other posts in here people have said that the Lamictal side effects can get better over time.

I am so with you on the dizziness and nausea. It's there all the time for me and I don't like it. My vision is blurry, and sometimes my eyes cross for a few seconds. And I feel like I'm on speed, or whatever I imagine that speed would be like. I can't sleep, either.

The tingling feeling sounds icky. I have something that I don't know is the same. I could describe it as tingling, or maybe like extremely fast vibrating or buzzing inside my body or like I can feel the blood running through my veins. It's really hard to describe. It's there 24X7, but gets noticably worse a few times a day. I don't know if it's the Lamictal or a seizure. I suspect the Lamictal, because it got better when I backed down on the dose. And there's no way I could be having a constant seizure for days on end and still be standing here.

I echo Nakamova. Has your doc mentioned how your EEG results might affect your treatment? Or if it will affect it at all? You may want to ask him.

It's okay to be pessimistic. It's normal when you've had all this stuff thrown at you. Dealing with the seizures is hard enough. Then they add in the meds on top of it all. It's pretty overwhelming. But know it's going to get better. It just takes some time fooling around with the meds and your body taking time to get used to them. Things won't be the same as they were, but it's going to be okay.

 

[The Mathematician]

Thanks everyone, I really appreciate all the support.

Nakamova and Endless, he did not say anything about how the results will affect treatment. I believe he said he wants to see how it goes, and go from there. I don't think he intends to change my medication, but I'm not sure. I guess we'll find out.

Seizures and side effects are a pain! I'm slowly learning to live with them. It's just strange going from very healthy (I haven't been sick in at least 2 years) to taking all these pills, hoping I don't have a seizure, and dealing with side effects. It's certainly educational, if nothing else. I'll manage.

Thanks again. You all have made me feel very welcome.