Hey Everyone

[reuben12]

Hey, just figured I'd put up a post here to introduce myself. Sorry if it doesn't make sense, that seems to be the new me . This is about as smart as I've felt in a few weeks so I figured that I'd take the opportunity to post before I go back to mush.

Anyways, brief overview. I'm 33 and canadian, never had any episodes until recently. Was a fit active man, no risk factors, no family history or anything, running ultra marathons and trying out for the fire department. I went to new york on holidays about 3 weeks ago and at the end of the first day there it hit. Basically just a bad case of the stupids is how I'd describe it. Unable to think or come up with words, then the lose the ability to talk and or move. A bit of twitching, but nothing too bad. Just basically had sessions where my body wouldn't do anything that I wanted it to. girlfriend says I would blank out completely. I think I had 20 or 30 of these sessions in the first 12 hours before they disapeared. A bunch of smaller ones where I just couldn't come up with words, but probably 20+ where I just couldn't speak because I couldn't make words happen. I ran all the standard tests which were all clear, was released undiagnosed a few days later with a prescription for kepra.

I think it might have been the next day after my morning dose it came back, and by the time I got into the hospital I had my first moment where I couldn't even move the eyes which freaked me out. The next week is a bit of a blur. I think they had me on 3 anti seizure meds, but the blood tests were all comming up way too low so they just kept upping the dose and I think I ended up getting worse. In the episodes I felt like I could hear and understand, but just didn't have the brain capacity to make anything happen. Any touching would send me over the limit though, and I'd burst into tears overwealmed and feel like I was screaming for help even though nothing would come out. Definately the most terifying moment in my life to date was them trying to test my reflexes while in one of my episodes. As long as I wasn't touched though I was nice and relaxed, just had to let them pass and a while later I'd recover back to normal. First I'd get eye movement back, then speach, then sometimes it would take a fair bit longer to get my limbs working again. I remember my right hand taking like 10 minutes the one time to start listening to what I was trying to tell it to do.

After a week I was air lifted back home, and the doctor pulled me off of 2 of the drugs and dropped the levels of the last one. I think it's depakote. He says that I was basically just beeing overdrugged. After a few days I was released, and now am at home. I guess I'm at the point now where I don't know what is happening, what is caused by the seizures (if that's what they are, they are calling them complex partial seizures now I think), and what is the meds. I have a few times a day still (maybe 5 or 10) where I get the stupids back, but not as bad. I can usually still speak, although it's much smaller words. I can't remember what I was doing though most of the time. Other than that I just always feel like I'm drunk. It feels like everything that has happened is a blur, even thinking back to yesterday I don't know if any of it was real, although talking with the girlfriend I'm sure she will confrim all of it to be true. Reading though some of the other posts it seems like that is all pretty common though. I guess I'm just confused, not sure if I should be looking at switching meds, or just give it more time to set in, or

crap, came back. i'll try to write more later if I can.

oh yeah, arm twitches wrong and pain in limbs that doesn't exist

 

[neilB]

Welcome

Hi Reuben!

Welcome. I can relate to the "stupids!" Seems that it's happening more and more with me. I originally was diagnosed with Tonic Clonic (Grand Mal) as a result of a hit and run while riding a bicycle and now they've added the "complex partial" since I've got some of the same symptoms as you. I know the meds do take a while to "kick in" and I'm on keppra too and the MD kept asking me if I was taking it because the levels were so low. You'll find a lot of great people here and a lot of answers as well. Again, sorry you're here but WELCOME!:hello:

 

[epileric]

Welcome to the club Reuben

Yeah..... you're not as abnormal as you might think, at least as far as all those symptoms are concerned. It's good to have another Canadian here. There's a few of us on this site but the cool part is that the people are from all over.

I got upset once because I realized I'd blacked out. It felt like I was walking, I blinked then everything I was walking towards was behind me. Sort of like my life was a movie & somebody edited a part out right there. I told my mom about this & she said that I"ve always done that. To me the scary part is that I don't know I blanked out and I was 40 years old I'd finally learned that.

I would recommend you keep track of your seizures on a calendar with whatever details about it you remember or are told. If you keep track of your daily schedule (what/when you eat & sleep, activities etc) you might help pinpoint what (or some of the) triggers for your seizures.

You might want to check this page out http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/ The first link will describe the different types of seizures if you're interested in figuring out which you have.

 

[reuben12]

oops, I seem to have gone for a 2 hour nap part way through the post lol. I think one must have hit there. Oh well, I was rambling anyways.

I mainly just wanted to pop on and say hi and do a quick introduction but got sidetracked. It's nice that a place like this exists. I guess just knowing that I'm not the only one having these things makes it a bit less scary, or maybe it's more scary as I realize it might happen for life. Oh well, either way nice to have somewhere to read and ask questions and figure it out.

That must be scary to be missing parts of things. At first at least I remembered everything, but it's turning into a bigger blur as time goes on. Hopefully the meds kick in and this isn't the permanent me. It's great to see that there are other canadians on here. I wasn't sure what the mix would be like.

Any advice that people can give is greatly appreciated. I'm planning on just sucking it up and going through the next week or so on these meds, maybe get a month out of the way and then try to get in to see if there might be something more appropriate. At this point I'm a bit more worried about the emotional side of things. It all seems sureal so far, so I'm doing find now, but I expect as it sinks in there will be some stuff to work through eh.

 

[Nakamova]

Hi reuben, welcome!

I too was overdrugged after my first seizures. Too much Dilantin was causing balance problems, fatigue, rapid back-and-forth eye movements, etc. I just assumed it was the epilepsy to blame. Thankfully when they tested my levels they realized the Dilantin was the culprit, and I backed off the dose.

Eric's advice on keeping a seizure journal is a good one. It's a great way to record seizures, meds, dosages, and side effects or symptoms. And as Eric said, you might be able to isolate a seizure trigger too. All sorts of things can trigger seizures. The #1 trigger is fatigue, but there are many other kinds. They can be physical, physiological, and/or emotional stressors. Some folks are triggered by flashing lights or computer screens, others by food sensitivities or hormones. Since you've been an ultramarathoner, perhaps dehydration or electrolyte imbalance plays a role.

I hope you get a handle on things soon.

Best,
Nakamova

 

[Endless]

Hi, Reuben!

Welcome to CWE. I'm glad you found us. This place has been a lifesaver for me. The folks in here have told me all the things I wish my doctor would have.

The time when you are first ramping up on the meds can be really confusing for your body. And boy, do some of the medications make our brains fuzzy. I am getting off trileptal right now - it made me so mixed up I didn't know which end was up.

Every medication affects everyone differently. And your reaction to one won't be the same as a reaction to others. When you are on the right med you'll probably be able to think okay. Most people take the meds with few side effects and are just fine. It's those of us with some bumps in the road that end up in here, helping each other.

Seizures can also leave you really confused. I have complex partial seizures also. I have marbles in my brain for hours after that. And I usually have a very long nap like yours.

Did your doctor say where in your brain your seizures are coming from?

 

[huskymom]

Welcome Reuben!!

You have stopped in at the right place. Everyone here is sooo helpful and kind. Anytime you have any issue, medical or otherwise, just post here and one of the members, or more, will help you out. It is nice to know that you are not alone! :hello:

 

[reuben12]

Thanks everyone,

Any advice on when a good time would be to do a follow up visit with the doctor. I've only been out of the hospital for half a week, but I've been on this medicine for a few weeks now and feel it just isn't the right one for me. I feel a bit better now, but I'm still having a few episodes a day and don't trust myself to walk or cook alone as I might not find my house or have a house left once I do find it.

I was originally trying to wait a week before going in and asking for advice on meds from him which would be next monday, but yesterday I had a few bad ones and felt like the sooner the better. Just not sure what type of timeline that I should look at.

Nah Endless, this guy won't even commit to them beeing seizures as they didn't catch it on the brain scan. Guess that brings up the point on if I should also look for a second opinion instead of just relying on the doctor I was assigned in the ER

 

[Endless]

Reuben,

Frontal lobe partial seizures are especially hard to catch on an eeg. Temporal lobe partial seizures are hard, too. they say 40% of all people with temporal lobe epilepsy haven't had a positive eeg. THey are diagnosed based on symptoms/history alone. Most neurologists, though, won't give an official diagnosis of "epilepsy" without a positive test result.

If it were me I'd call my doctor's office, tell them how you feel and your concerns, and ask when you can come in. The nurse should fit you into the schedule.

 

[reuben12]

Cool, thanks. Guess I should look them up and see what makes more sense. I haven't been too concerned with a diagnosis at this point, but in the long run I'm sure it will help me understand things a bit more. Guess I'll call today and see what they say. He said to follow up in a month, but that seems like way too long in my mind.

 

[reuben12]

doh that's awkward. Got a hold of the doc's office and they said they can't fit me in till late november. Sometimes I hate the canada medical system. My family doctor is closing his practice too. Guess I see if the drop in med center feels comfy messing with my epilepsy drugs

 

[Endless]

Gee.... I've heard it's REALLY hard to find a good family doctor in Canada. Most of them aren't taking new patients. How do you go about finding a doctor up there?

 

[epileric]

It is harder to find a doctor in Canada but it's still not too hard in some provinces. I moved from BC where even if I didn't like my doc I could switch no problem. Now that I'm in Ont. I have to go on a waiting list for a few months to find one.

Not a big deal really because there are clinics that are open where I can see a doc if I need to.

 

[reuben12]

Yup, it definitely was easier to get care when I was in the states. I ended up going to a drop in clinic and ended up getting my meds increased instead of changed. guess there isn't much they can do in 10 minutes or less.