Concerned, what should I do?

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Drinking too much water can upset your sodium balance. It's not something I will discuss with my doctor, but it is something I will do in moderation.

Getting back on topic a bit, I'm up to two seizures today. I had at least 1 yesterday, and possibly two more that might've just been chills.

I spoke to the hospital today and my ambulatory EEG is setup for next thursday. I took the day off so I don't have to go to work like some sort of freak. Sucks to take a day off, but it had to be done at this point. I have no doubt that the EEG will return abnormal.
 
Everybody is different, but it is possible to have uncontrolled small seizures without having a big one. It seems that the meds can control one type without controlling another. At times I have continuous sensory simples for days on end, but they don't progress to complex partials or generals. (I've had all of them.) However, if they are out of control your focal seizures could get really bad and not go away. They make you feel bad, you can't think, etc. You also can never be sure they won't progress.
 
Bernard said:
Gatorade has a lot of sodium.
Too much sodium could potentially upset the mineral balance (sodium vs potassium/calcium/magnesium) in your system.
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Gatorade is owned and marketed by Pepsi and Powerade by CocoCola. The fact that they are marketed to athletes as "health drinks" in order to help your electrolyte balance is, IMO, just another way to market soda pop from two companies who are not known for caring about their customers' health.
 
I think there are many more companies on this planet that have an honest disinterest in doing good to the lives of the people they affect than Coke and Pepsi. Coke and Pepsi wouldn't be the popular companies they are today if they provided products to the market that were bad for you. If you choose to believe they are providing products which are unhealthy to the market that is your perogative, but millions of people around the world drink Coke and Pepsi everyday and survive to drink gallons more within their lifetime. If they served products which caused cancer or diabetes government action would've been taken long ago (just like with cigarrettes). There really is no reason to be concerned with moderate, reasonable consumption of Gatorade or any other Coke or Pepsi product. End of line, thankyou for your patronage of my thread.

Changing topics.

This weekend was a write off, seizure wise. I had at least a dozen seizures over the past few days, including probably 4 or 5 today. My weekend was full of caffeinated beverages, alcohol based drinks, and smoking (cigars and e-cigarrettes). As far as I'm concerned, my medication should be effective despite all of this. Not that its something I do on a daily basis. My neurologist is aware of my drinking and smoking so it's something that is taken into account.
 
resaebiunne said:
... If they served products which caused cancer or diabetes government action would've been taken long ago (just like with cigarrettes). ...
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The FDA is not infallable. If you get a chance, you might try watching a movie called Food, Inc.. It's an eye opener.
 
Bernard said:
The FDA is not infallable. If you get a chance, you might try watching a movie called Food, Inc.. It's an eye opener.
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Of course the FDA is not infallable. That is a given with any medical institution. It's also true that the FDA has more important tasks at hand than looking into the effects of Coke and Pepsi products, but rightfully so. It's not the governments job to ban or even investigate every product which is unhealthy (*cough* marijuana *cough*). Coke and Pepsi are at not at the top of the FDA's todo list because they don't need to be. It's that simple.
 
Bernard said:
The FDA is not infallable. If you get a chance, you might try watching a movie called Food, Inc.. It's an eye opener.
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So I just finished watching this movie about an hour ago. I honestly found it to be a bit cliche and stereotypical in its message, having seen and heard this story before. A few bad companies should not spoil the image of an entire industry. That is a logical fallacy.

Anyway, I found the whole movie to be very anti-meat, specifically poultry and beef based products, and only briefly touched on the issues. The concerns about genetically modified foods are merely skimmed over with the main emphasis seeming to be the lawsuits against (a minority of) farmers using their own seeds when they've potentially been cross bred with genetically modified crops neighboring their own.

I don't think this movie has anything to do with Gatorade other than the fact that Gatorade is made with corn. The movie correctly points out most food is made with corn, but doesn't really state why this is bad except to point out how the heavily subsidized corn industry has attracted illegal immigrant labor from certain companies.

This post is by no means an attempt at an "in depth" review, but to say that I found this movie disappointing and underwhelming is an understatement and should paint the general picture of what my general inclination is. This movie is alarmist and schadenfruede.

I'll keep drinking my Gatorade.
 
Fun day has arrived. I took the day off of work because I'm wearing my ambulatory EEG as I write this. The hospital is about two blocks away so I walked over to get setup. They are expecting me around 11:30 tomorrow, which is a bit late considering work, but I'll live.

There is a little button that I am supposed to press if I have a seizure and a diary that I am supposed to fill out hourly to keep track of my progress. So far, no seizures. Not sure what I'm going to do all day. Guess I'll load up some shows on Netflix and have a party by myself.
 
Well the EEG has come and gone. I stopped off at the hospital this morning to get the electrodes off. I wound up having three seizures while the machine was hooked up. They gave me a button to press when I had an "event" so I made sure to press the button. One seizure I had this morning, and two I had yesterday. It was a bit strange that I did not have any seizures until yesterday evening, and even then it took some coaxing. I actually went out for some beers yesterday evening despite having the EEG all hooked up. I figured if the hospital goes through the effort to trigger seizures, going out and stimulating myself some couldn't hurt. The strange thing is that to this point I wouldn't consider drinking to be a seizure trigger. It also occured to me that it might not necessarily have been the drinking that triggered the seizures but the noisy, stimulating environment. Suffice to say I wound up having two seizures while out, within about 10 minutes of each other, properly logged and documented in the diary they gave me. The technologist mentioned that she had a good idea of where my seizures were coming from based on my description, but pointed out that focal seizures don't "activate" enough of the brain to necessarily show up on an EEG. So hopefully the seizures I had will be enough for a good diagnosis. It's also not clear to me if I had any seizures while sleeping, which remains to be seen.

I'll update this thread when I hear back from my neurologist, hopefully next week.
 
It's great that your EEG registered brainwaves that may be helpful to your docs. As your EEG tech mentioned, partial/focal seizures can be too transient or occur too deep in the brain to register on an EEG, so it's a bonus when they do make significant appearance. Keep us posted!


My weekend was full of caffeinated beverages, alcohol based drinks, and smoking (cigars and e-cigarettes). As far as I'm concerned, my medication should be effective despite all of this.
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That's certainly a reasonable goal, though it's not one that's necessary realistic for everyone with epilepsy. In my case, I'm not a smoker but I am able to drink caffeine and alcohol without any negative effects on my medication's ability to fully control my seizures. I wish you similar luck, and hope that you find a treatment that works on your terms.
 
Thanks for posting the reality check, Nak, about how alcohol and caffeine do not categorically interfer with medication's ability to control seizures.
 
resaebiunne said:
The technologist mentioned that she had a good idea of where my seizures were coming from based on my description, but pointed out that focal seizures don't "activate" enough of the brain to necessarily show up on an EEG. So hopefully the seizures I had will be enough for a good diagnosis. It's also not clear to me if I had any seizures while sleeping, which remains to be seen.
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That's definitely true, and I'm so glad that they are being up front about it. None of my daughter's simple partials have shown up on an EEG, but she does have "spikes and waves" in her left temporal lobe that occur when she sleeps that are a marker for epilepsy. And of course when she her meds were reduced for the EEG and she had tonic-clonic seizures they showed up on the EEG! But even then, those first focal seizures did not show up on the test until they spread and generalized.

Hopefully they got really good information from the test that can help guide your treatment! Keep us posted!
 
Well I'm starting to get annoyed. I called my neurologist's office about two weeks ago and they told me they hadn't heard back on the EEG results from the hospital. So I'm going to call them again on Monday and see what the deal is. It's been exactly a month since I had my abulatory EEG. It's been so long that I've already received the medical bill and paid for the EEG. Honestly, I wonder what is taking so long. Either the doctors are trying really hard to interpet the EEG recordings, or they have sat on their butts and done nothing. Either way it's unacceptable.

I'll also mention that my seizure activity has stayed relatively constant; still having about 3-9 seizures a day average. Several people have noticed and commented on my focal seizures, including my new psychiatrist, who noticed that I had a seizure while I was talking to her. I feel like the severity and strength of the seizure is worse than it used to be. In particular, my mom commented that the seizures are longer.

Also of note is that my psychiatrist is sending me for a neuropsychological evaluation. I'm not sure exactly what the test is, but the way I understand it is that they test cognitive functioning of the brain to determine any weak (or strong) areas. The idea is that they can measure how the brain has been affected by the seizure activity (or other factors) and determine if there is any damage or malfunctioning. I found an interesting article on the test at this link: https://www.med.unc.edu/neurology/divisions/movement-disorders/npsycheval

I'm not sure, but I get the impression my new psychiatrist didn't want to diagnose me as schizophrenic. She mentioned that most males with schizophrenia are diagnosed in the early 20s rather than late 20s. That said, I've read some interesting articles on schizophrenia in senior patients (60s and older), so I'm not sure I agree with my psychiatrist. It's also worth pointing out that in summer of 2014 when I was first diagnosed with a psychotic disorder that the psych. thought my condition was closer to bipolar than schizophrenia. I'm not sure if my new psychiatrist is aware of this, so I'll be sure to point it out next time I see her.

Anyway, I'm looking forward to the evaluation, but I'm getting really tired of the constant doctors appointments and tests. Oh well.
 
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My doctor started me on Kepra in addition to the lamictal I had been on for a long time after I had a tonic seizure, it sounds like the side effects of Kepra were not explained to you by your doctor they have made me moody and some what depressed. I understand my doctor did not let me know either. good luck it sounds like you are going through a rough patch.
 
Tonic clonic seizures put me out of action for a least a day, hate them most of mine are at night. Take your meds at the same time each day if I miss a dose there's is a good chance you have a seizure. Talk to your doc about !eppra side defects.
 
Honestly, I was never consulted when I was put on Keppra. The hospital doctors prescribed it and I simply started taking it. That said, I have read of the side effects that it can potentially have, but I have not had any side effects from taking keppra. I'm happy to stay on the Keppra since I have not had any generalized seizures since I started taking it, but it has failed to control the focal seizures that I have on a daily basis. Every time I have a focal seizure I feel like there's this stopwatch in the back of my head and my time is running out and that I'm bound to have some breakthrough generalized seizures at some point. Medicine is great, but only if it works. So far, I would not say it's been a success.

That said, I've tried calling my neurologist, both today and yesterday and of course I get the standard "leave a message" prompt. I'm hesitant to just leave them a message because of all the times that I have, they never called me back. My neurologist is great, but only if they actually answer the phone. Next time I have an appointment with her, I think I'll let them know this.
 
resaebiunne said:
That said, I've tried calling my neurologist, both today and yesterday and of course I get the standard "leave a message" prompt. I'm hesitant to just leave them a message because of all the times that I have, they never called me back. My neurologist is great, but only if they actually answer the phone. Next time I have an appointment with her, I think I'll let them know this.
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I had this issue with my first neurologist. So often my call was never returned, and I was never too sure if the receptionist didn't pass on the message or if the neurologist just wasn't calling back. A year later the neurologist implemented email to "guarantee" a response within 48 hours. Great, right? Nope. Same issue. I went as long as 2 weeks once before getting a reply to an email I sent 3 times. Fortunately a specialist from another field was so upset by all this that he fast-tracked me into the epilepsy program and that is where I've remained. Very happily! I hope fate comes through for you like it did me, and you find someone who can be more responsive.
 
I am happy you are not having side effects from the Keppra keep up with it. Those leave a message prompts are so annoying. I am having a blood test today to see if they need to adjust any of my meds.
 
Well my neurologist has finally gotten back to me with the EEG results. Her receptionist told me that they confirmed I was indeed having seizures. No follow up appointment was made other than the 3 month follow up that was already scheduled for January. A bit anticlimactic, but in a way not surprising. I had a previous neurologist who wasn't concerned about my seizures and took me off medication, so I'm guessing the same rule of logic is being followed here. Just hoping that I don't have any generalized seizures from now on, as that would be bad. My guess is that sooner or later I will have a breakthrough seizure, but for now it is what it is, and that's a good thing. Here's to hoping I can drive again soon :)
 
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