Concerned, what should I do?

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Having TCs when you hadn't before was the change in type I was talking about. It sounds like things are evolving for you and not in a good way unfortunately.

And it sounds like you're not just having the focals at lunchtime anymore.

Question. Was the bartender asking you if you wanted another iced tea or by "drink" did you mean alcohol?

Something that may never have been a trigger might be be becoming a problem for you now. Perhaps you might need to be more careful about something that had been no big deal before.

There is nothing wrong with a good lie-in on the weekend but would you say that since starting the higher dose of keppra that you feel more tired than would be normal for you?

If I were you I would give the keppra a fair trial while remaining aware that there are a lot of other medication options you can try if it's not working.
 
Up to 7 seizures now.

I never said I was having the focal seizures just at lunch time, they've always happened at all times of day.

Yes, I was out drinking tonight. I had my usual "three drinks". A mimosa, some MacAllan 12, and a Yuengling Lager. Very tasty. Never have seen alcohol to be a trigger, although just before my last generalized seizure I had been drinking. It's possible that I was status epilepticus at that time, but since nobody was there to witness the seizure I have no way of knowing.

I suppose it makes sense not to overreact, but at this rate I'll be in the hospital by the morning ;)
 
Sorry, I mis-interpreted what you said about tending to have a seizure at lunchtime as those being the only ones in your day. I didn't realize they were happening other times too.

Something is changing in you. Going from only focals to several TCs that caused you to break a shoulder. Being put on some pretty heavy meds. So just because something has never been a trigger before doesn't mean you should disregard it now. The game has changed.

Ummm. How about if you really feel you might end up in the hospital, how about taking yourself to the "urgent care" walk-in rather than waiting to need an ambulance? It would probably be better for your brain. And you don't want to mess up the other shoulder.....

Stay safe.
 
Well my seizure count on Saturday was 8 seizures. Yesterday I believe it was 1 (maybe 2?). Today, the count is at 1. Not sure what the deal was on Saturday, I suspect the change in sleep cycle is to blame.

Honestly, Saturday was a pretty typical day for me, seizure wise. I wouldn't say the hospital or urgent care was necessary (not that I went), but it's a bit disconcerting being on 3000mg of Keppra a day and still having seizure activity like that. My family is concerned and is urging me to call my neurologist. Personally I'd rather give it more time even though I don't think anything will change. I'm getting a bit tired of the constant stream of appointments, and it's only going to get worse now that my new medical insurance is kicking in. Gotta establish a new psychiatrist and general physician.
 
Perhaps give it another week to settle down and try to keep a more consistent sleep routine next weekend. If things don't get better though, I think listening to your family sounds like the way to go.
 
There is nothing like one doctor's appointment after another to make a perfectly sunny day look gray. Still you got to do what you got to do, but make sure that you are having a good time anyway!
 
Resaebiunne --

My guess is that you were put on Keppra at the beginning because it's one of the anti-seizure drugs that you can ramp up very quickly (others need to be tapered up fairly slowly, over days and weeks and even months). I know you want to give it more time to work at the higher dose -- and that's fine -- but it's also pretty likely that the higher dose would have shown efficacy by now, given how quickly Keppra loads.

If Keppra isn't doing the job, you and your neuro have quite a few other meds to consider. It might be worth trying a med with a longer half-life, like Lamictal -- i.e. one that lasts longer in the system.

In addition, keep looking for possible triggers. Triggers can be just about anything that causes physical, physiological, environmental and emotional stress. They're different for every person. And they can have delayed or cumulative effects, and change over time. For that reason, I wouldn't rule alcohol out. If it's easy, you could try cutting alcohol out for a week to see how things go. (In addition, alcohol can interact with meds, sometimes in unpredictable ways).

I hope you get more stable soon. As a veteran of two shoulder surgeries for seizure-related damage, I'm sympathetic to what you have endured and hope smoother sailing is ahead. :)
 
Good point Nak, about the alcohol not only being a potential trigger on its own but also potentially interacting with meds.

I don't know 1st hand about keppra but I know my meds make any alcohol I do indulge in seem magnified, not in its "getting hammered" effect but in its hangover effect the next day. I can get a raging hangover (as if I had had a night of doing tequila shots) from one glass of wine now when I wasn't even tipsy. So it has become really not worth it for me to even start with booze.

It also makes me wonder if I can feel that different, what else is it affecting in by body.


Is keppra a very sensitive med as far as dosing times go? I ask because the OP felt his recent Saturday seizure fest had something to do with sleeping in unusually late.
 
Is keppra a very sensitive med as far as dosing times go?
It can be, because its half-life (approx. 8 hours) is so short. (Compare to Lamictal, whose half-life is approx. 13.5 hours). For someone who is sensitive to even small changes in medication levels, missing a dose or being late can have tangible effects. Another factor is how/when you take it: Keppra peaks in the blood plasma after about an hour, but if you take it with food the peak is reduced (about 20%) and delayed by an hour and a half. And people can have widely differing metabolisms. One study (of 69 patients taking Keppra at levels ranging from 500–3000 mg/day) found that the trough plasma concentration ranged from 1.1 to 33.5 μg/mL (!).

Unfortunately, that kind of variation can make it extra-hard to figure out how and when to tweak a med. I think of CWE member Arnie, who had no luck with a variety of meds/doses, opted to have a VNS implanted with negative results, and then discovered that taking Lamictal three times a day did the trick for him.
 
Well, the strange thing about Saturday was that I hadn't gone out the night before. I didn't go out until Saturday evening to have some dinner and drinks. At that point I had probably been alcohol free for a few days, so I don't think alcohol was the trigger. I'm not saying that it couldn't be (in general), but I really don't think so. It would be a good experiment to try and go a week or two with no drinks to see what happens, although I really doubt anything will happen.

Seizure count of 1 today (so far).

I spoke to my neurologist today and mentioned I was still having seizures. They said they are writing a script to the hospital for an ambulatory EEG. Not sure what this means work wise, whether or not I'll be needing time off, or if they plan to do it over the weekend. I guess I'll find out soon enough. If they do the EEG over the weekend I have no doubt they'll pick up some interesting waveforms. What I don't think they will see is generalized seizure activity (unless something bad happens). Also curious whether or not they're going to stop the medication for the EEG.

On a random note, I've bought a water distiller. I've been drinking tons of Gatorade and have wanted a distiller for a while now, so I'm planning on drinking plenty of Gatorade made with distiller fresh water :D Drinking Gatorade has not helped with the seizures, BTW.
 
As I'm thinking about this more: To add, since I hadn't been out drinking Friday night, but I had Saturday evening, shouldn't it stand to reason that if alcohol was a trigger that I would have had more seizures on Sunday? But instead, I had only the one, versus 8 on Saturday.

Both days, I also ate bowls of cereal for breakfast, so milk would be out. Both days I took my meds late due to sleeping in. I really think it just comes down to chance.
 
On a random note, I've bought a water distiller. I've been drinking tons of Gatorade and have wanted a distiller for a while now, so I'm planning on drinking plenty of Gatorade made with distiller fresh water Drinking Gatorade has not helped with the seizures, BTW.

Gatorade is full of fake chemical ingredients. Yes, it gets you your electrolytes but also with a huge dose of sugar (or fake sugar in the low-cal version).

May I sugest a natural alternative of coconut water? It is the purest water in the world and is actually used in IVs bags as hydration/electrolyte fluid in parts of the world where sanitary water is hard to come by. All the electrolytes you need with a lot less sugar and chemicals that you don't need.

http://www.ncbi.nlm.nih.gov/pubmed/10674546
 
As I'm thinking about this more: To add, since I hadn't been out drinking Friday night, but I had Saturday evening, shouldn't it stand to reason that if alcohol was a trigger that I would have had more seizures on Sunday? But instead, I had only the one, versus 8 on Saturday.
Of course, alcohol might not be trigger at all. Just one thing to consider and possibly rule in or out. Sometimes it can be a combination of things. The #1 trigger is fatigue, which can be the secondary result of many factors (such as alcohol or illness) and can be cumulative over several days before having an effect. It's also the case that the brain can get "in the habit" of seizing. What might seem like a small neuronal detour the first few times can become hardwired into a neuronal superhighway after many seizures. As a result, the threshold can become lower and the triggers can become more diffuse.
 
Gatorade is full of fake chemical ingredients. Yes, it gets you your electrolytes but also with a huge dose of sugar (or fake sugar in the low-cal version).
http://www.ncbi.nlm.nih.gov/pubmed/10674546
I'll stick with Gatorade. 1) I'm not partial to the taste of the coconut water. 2) It doesn't come in powdered form which is important since I have to walk to the grocery store. 3) I'm not convinced that supermarket coconut water would be good enough to be used intravenously. It might be passable to the alternatives in a 3rd world country, but when I can make my own freshly distilled water I'd prefer to use that.

As far as Sugar goes, the container of coconut water I have has a nutrition facts label stating it has 9 grams of sugar. This is an 8 FL Oz serving. Compare to Gatorade which is 14 grams of sugar for the same 8 FL Oz serving. That is really not a significant difference, IMO. That said, don't rule Gatorade out because there are different formulas. Yes, I am drinking the original formula. Gatorade Perform 2 has 5 grams of sugar for an 8 FL Oz serving. That's "better" than coconut water. So if anything, I should switch to powdered Gatorade Perform 2. But that's if you consider sugar bad, which it really isn't. Unless you're on a ketogenic or similar diet, sugar is a normal part of a healthy diet.
 
Well we will have to agree to disagree on that.
Yes I suppose so, but you're posting sources that don't really support your argument.


Two years later a new CSPI report, Food Dyes: A Rainbow of Risks, further concludes that the nine artificial dyes approved in the United States likely are carcinogenic, cause hypersensitivity reactions and behavioral problems, or are inadequately tested.
Uhm, okay. What a vague statement.

Red 40, Yellow 5, and Yellow 6 contain benzidene, a human and animal carcinogen permitted in low, presumably safe levels in dyes.2 The FDA calculated in 1985 that ingestion of free benzidine raises the cancer risk to just under the “concern” threshold (1 cancer in 1 million people).
I don't see how 1 cancer in 1 million people even statistically works out. Surely there is a larger percentage of error there than the granularity of these studies can measure. Epidemiology should be taken with a very large grain of salt. Epidemiology is barely a science. Not saying that is what these results are based on, frankly I don't care enough to read the references to find out. 1 in 1 million is a small number. You're more likely to get hit by a car than get cancer from benzidene.

This article I just can't take seriously. It points out things that might happen, but doesn't prove anything. There's no science, just a listing of things that the author is probably guessing to be possible health concerns.
 
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Like I said. Agree to disagree.

I think the statement "likely are carcinogenic, cause hypersensitivity reactions and behavioral problems, or are inadequately tested." is quite non-vague. If the best that can be said of some of them is that they are inadequately tested...........

I saw my seizures go from about 20-30 a month to 1 a month while completely unmedicated just by cleaning up my diet. This was long before I had ever heard of gluten or ketosis. This was just me getting into body building back in the 80s.

Yes, I know this is an anecdote the plural of which is not data but it is enough for me to believe that this makes a difference.

So, if you think that booze is not an issue and eating fake foods doesn't matter, that is up to you. If you ever get to a point where you have tried everything that comes in an Rx bottle and still haven't found resolution or get concerned about the long term side effects of the Rxs, then let me know and I'll be happy to help.
 
... I've been drinking tons of Gatorade ...

Gatorade has a lot of sodium.

... Gatorade contains about 450 mg of sodium per liter, or about 110 mg per cup. Drinking one liter of Gatorade will replace the sodium lost in approximately half of a liter of sweat.
...
Gatorade contains twice the amount of sodium as other sports drinks, such as Powerade and Allsport Sports Drinks which each contain 55 mg of sodium per cup. Regular and diet sodas typically contain about 50 to 60 mg of sodium per cup. Coffee contains about 5 mg of sodium per cup and water contains about 2 mg of sodium per cup depending on the source of that water. The amount of sodium in milk varies depending upon the type of milk; non-fat or skim milk contains about 130 mg per cup, while buttermilk contains about 260 mg of sodium per cup. Tomato and other vegetable juices can contain upwards of 650 mg to 675 mg of sodium per cup.

http://www.livestrong.com/article/273703-how-much-sodium-is-in-gatorade/

Too much sodium could potentially upset the mineral balance (sodium vs potassium/calcium/magnesium) in your system.

This sounds like something you might want to discuss with your doctor(s) IMO.
 
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