Suddenly I'm having seizures after MANY years with no problems

pccoder

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I had 2 seizures in high school. At the time (1987) there was no guarantee that I even had a seizure, only that those people who saw me "pass out" insisted that I must have had a seizure. EEG, CT Scans, MRIs, etc. showed nothing. I remember being put on 300 mg of dilantin for 2 years. After 1 year, I was allowed to start driving again. Not long after 2 years passed, I moved away from my family and felt that the whole Epilepsy thing was a crock and that I did not need the dilantin. Once my Rx ran out, I just stopped taking it.

Fast forward about 15 years. I had been living with my girlfriend (wife now) and woke up one night in the back of an ambulance. "You've had a seizure" I was told. I live in Florida. In Florida, for a neurologist to be required to report to the DMV that you have had a seizure and your license should be suspended, you must lose consciousness. As I was asleep when my grand mal seizure occurred, I technically did not lose consciousness. ;) I was simply asked not to drive for a couple months to ensure that I don't have any more seizures, and that the dilantin is doing its job. 300 mg/day again. Again, EEG, CT, MRI showed nothing. I was told that given my history from 15 years prior, my "events" in high school were undoubtedly seizures and that I would be taking anti-seizure medicine for the remainder of my life. I'm stubborn and didn't much care for that. Especially since the doctor couldn't tell me WHY I was having seizures. "Sometimes we simply can't find the reason", blah blah blah.

Eventually I switched to a different neurologist who agreed that if I were to go 2 years without a seizure, he would be OK with me stopping the anti-seizure meds. Well, 2 years came and went, I stopped the dilantin and somewhere around 3 to 6 months afterwards I had another nocturnal grand mal seizure. Back on the dilantin. After about a year, I asked to switch to a different anti-seizure drug, as the dilantin was giving me shaky hands. My neurologist switched me to Keppra. 750 mg twice a day. About a week or two after the switch over I had another nocturnal grand mal seizure. I was put on driving restriction for another month or two while we waited to make sure that I wasn't going to have any more. Again we did another EEG, CT and MRI; all of which showed nothing.

The fun begins. This puts us somewhere around 2005. I had decided that I wanted to take up skydiving. What a blast. Over my 1 1/2 years of skydiving I did 3 tandems and 121 solo jumps. On my 2nd to last solo jump I was showboating and landed really hard (became altitude unaware) and hit the ground ass first compression fracturing 4 vertebrae in my thoracic spine. I was obviously under an enormous amount of pain and was given prescription narcotics for my back pain and eventually was given pain block injections after 3 months of methadone for the pain. After about a year I went back and did my last skydive. I was happy to jump again, but once in free fall I was scared and remembered all that pain. I decided to hang it up for good once I landed.

Over the next 7 or 8 years my back would get aggravated from time to time. My neurologist would right me a Rx for Lortab for the pain. I've been on/off Lortab ever since. Last year, around this time, I was finding that I was losing the ability to function. I couldn't go anywhere or do anything unless I was taking the Lortab. I had effectively realized that although I'd never really been a very sociable person, I didn't know how deeply my anti-social behavior and fear ran until I would be without the Lortab. See, I would only take it at night, so during the day and often towards the end of the day I would find that I was simply having overwhelming panic and anxiety. It didn't take long to realize that I had been self medicating for a deep rooted case of social anxiety. I knew then that I needed to get off the Lortab as well, as I was taking it more for the anxiety and euphoric effects than for the back pain. I'd learned that how I was feeling towards the end of each day was simply withdrawals from not having Lortab in my system.

For at least 6 months prior to and after 2 weeks off the Lortab I was ready to walk away from a high paying job, considering suicide on a daily basis, etc. It was bad. What didn't make sense was that 2 weeks off the Lortab and I was still having what I thought was intense withdrawals. I was sharing my withdrawal story with people on a forum devoted to this kind of thing. Everyone was saying, "what you are experiencing 2 weeks after stopping the Lortab couldn't possible be Lortab" and certainly not given that I was taking only 10 mg/day. This is additionally how I knew this was a social anxiety problem and that the Lortab had been covering that up for years and I just didn't realize it until now. I was seeing a therapist who wanted to talk away my problems, but I was making no progress whatsoever. I finally made an appointment with a Psychiatrist, knowing that I needed something, some sort of drug for the social anxiety, but didn't know what. I was finally off the Lortab, but each day was an exercise in terror and I was miserable. I had an appointment with my neurologist only 2 days before my appointment with my shrink. I asked the neurologist could it possibly be a neuro problem? Could my seizure disorder be to blame for how I was feeling or not? He placated me and ordered an EEG that very same day. I got the results back a few weeks later. I asked him at the time, if I weren't going to the shrink and HE were to give me something for the social anxiety, what would it be? He said Klonopin. He said he'd feel better having the shrink give that to me. Weeks later I would find out that my EEG showed "spikes on the electrical waveform of my left temporal lobe".

2 days later I explained my entire story to the shrink who wrote me a Rx for Remeron (for the depression I was enduring) and Klonopin for the social anxiety. The first weekend was a blur as the Klonopin pretty much knocked me on my ass. After a few more days however I was able to start to function again, and it felt like a miracle cure. The overwhelming anxiety was gone, and although I was still aware of the anxiety, it was held at bay and I was able to get back to the business of my life. About 6 months later (approximately 6 months ago) we moved (within the same town) and I really aggravated my back and called and got a Rx for Lortab, knowing that would resolve the back pain. I've been taking it ever since. Again, I only take small doses; in fact I cut up my 10 mg tablets into quarters and would take anywhere from 1 to 3 quarters a day for the majority of the past 6 months. Occasionally, I would even take an entire pill over the course of the day. During this past 6 months I've realized that I'm starting to feel what I can only describe (after googling my symptoms) as simple partial and the occasional complex partial seizures. I'm perfectly aware of the fact that they are happening, and I don't lose consciousness; however for a good 15 to 30 seconds I go brain dead. I can't read what's right in front of me. I can't understand words that people say to me. After it passes, I am back to normal.

In September I had what I know now was a complex partial which almost became a grand mal seizure. I was dazed, confused, blurred vision, etc. It lasted for a good 30 minutes or more. My wife, the nurse, was very concerned that I might be having a stroke or TIA so we went to the hospital and long story short (after a few doctors visits) all cardiac problems were ruled out. In October (2 months ago) I had my first nocturnal grand mal seizure in probably 8 years. Between then and now I have had several complex partials and probably daily simple partials. I try to just act like nothing is happening and wait till they pass. I'm a software engineer, so I don't do a lot of talking to people during my workday, which allows me to get away with that. I explained this to my neurologist and he said that I need to try to stop taking the Lortab (as there is a potential problem with taking Lortab and Klonopin at the same time) and he also ordered a 72 hour ambulatory EEG which I wore during my vacation on Thanksgiving week. He increased my dose of Keppra to 2000 mg/day. On Dec. 10 while watching TV with my wife I had a complex partial (as I recognized it from the other 5 or 6 times it had happened before) and then the next thing I know is my wife is asking if I'm OK. "You just had a seizure", she says. At 42 years old, I finally have my first Grand Mal Seizure while awake. I was fairly scared and very confused, wondering how, why, etc. I asked that she call 911. They came and picked me up, took me to the hospital, gave me an extra 500 mg of Keppra and eventually sent me home after a few hours, with instructions to follow up with my Neurologist.

I already had an appointment to see him in 4 days, so I just waited until then to tell him what happened. First the news from the ambulatory EEG. It showed spikes again in my left temporal lobe. He explained that is the language center and has a lot to do with my ability to understand verbal and written language, etc. He's increased my dose of Keppra to 3000 mg/day which my wife tells me is the most that can be given. I have an appointment tomorrow morning with my shrink. I've already started to wean myself down off the Remeron (for depression) and the Lortab (I'm only taking 2.5 mg/night right before bed). Unfortunately, I am still having simple partials and last night had a complex partial which as soon as it began I jumped up from where I was sitting and basically tried to think of anything else to get it to go away. I'm going to ask the shrink tomorrow to prescribe something else for my anxiety.

My youngest brother, who will be driving me there, is also suffering from social anxiety disorder; however he takes something called Inderol (which is technically a blood pressure medicine) that can be used to treat social anxiety. I'm going to ask for the same thing. Evidently it has no contraindications with Lortab, which I don't know that I can do without. But, given the small amount I'm taking anyway, it just doesn't add up that it really could be the culprit. I'm seriously concerned that my seizure disorder, Epilepsy, is starting to become worse and worse. I don't know where this is going to end. It's frustrating and a bit scary all at the same time. More to come. Advice is welcomed. Yes, I already know that I'm fully addicted to the Lortab. But, I'm not abusing it, nor have I ever taken it in large amounts. Probably the most I've ever had is 20 mg in 1 day. And that was well over a year ago.

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This was written about a week before Xmas 2013. My shrink put me on Inderal and started to wean me off the Klonopin as I asked. I'm off the Remeron now too. On the night of December 30, 2013 I got up in the middle of the night and upon returning to bed at 4:30 am I had another grand mal. Wow, that's 3 grand mal seizures in 2 1/2 months after an 8 year hiatus!

I immediately stopped taking the Lortab on December 31, 2013. The simple partials stopped for 5 days! On January 4, 2014 I realized that I was simply over medicated with regards to the Keppra. I took myself back down to 1000 mg twice a day. 1 day later and the simple partial seizures started right back up, and I have had at least 1 per day ever since. On January 6, I saw my neurologist again and explained what had happened and wanted answers, no more screwing around. He was a bit baffled that after 8 years I'm suddenly having problems after none for so long. But it occurred to me that I hadn't REALLY gone 8 years with no problems. During all that time I did occasionally have a strange feeling that couldn't be explained. Nothing like what I had to devolved into nowadays, but still something neurological nonetheless. My neurologist explained that given the 2 EEGs that I'd had over the past year (both showing spikes in the left temporal lobe) that these episodes or events where I go brain dead for 20-30 seconds were in fact partial seizures. It actually felt good to put a label on them. He started me on Depakote. It's only been 3 nights that I've been taking it. Next Monday I'll start taking it in the mornings as well.

I do feel different when I take it. In fact, my partial seizures only occur after what I would consider to be enough time for the Depakote that I take the evening before to run it's course and not be at a therapeutic level the next day. It's 2:30 pm right now and I had my first partial seizure today only 40 minutes ago. So, that gives me hope that once I'm on this medicine twice a day, I may be able to actually get this thing under control.
 

qtowngirl

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as i said in your other post, try to (i know it's tough, can feel like hell) see it as an advantage just in the respect of having a warning. it's a bit muddled however:

while watching TV with my wife I had a complex partial (as I recognized it from the other 5 or 6 times it had happened before)
if it's a true complex partial you won't remember having it, or at the very least any slight remembrance doesn't help b/c the brain is out of control and one can't make any rationality. and c.p.'s are partial unconsciousness, hence no memory. another advantage of a simple... atleast we remember them. no matter how many grand mals i've had i always (may take an hour or two after while i'm regaining cognition and come out of shock) remember the simple, where i was and what i did to try and distract/stop it (tho that is rare to be able to do). i always try to tho, lol i'm not called a stubborn woman for no reason.
with epilespy we are putting up the good fight all the time. sometimes we lose, sometimes we win, but that's us. as long as we do our best to strive, learn, and try to meet others who understand (as no one else has even close to a clue), it's all we can do. onwards and upwards pc, and good for you for pushing for answers. we're our own advocates x10.
 

pccoder

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I never really knew what to call them, what I was calling "complex partials". So, I just called them that. Bottom line is that they were very similar to my simple partials with the added benefit of feeling really dizzy, wife thinking I'm going to fall over, everything looks blurry and it lasts 30+ minutes instead of 30 seconds.

Also, the two I had right before my awake grand mals truly SUCKED! I could remember, 30 or 40 minutes later after coming to, this terrible feeling where I know my body is starting to tighten up. My head starts to pull backwards as if I'm trying to look up above me. And even the beginning of that horrible moan that I shriek out when it starts (that my wife hates). After having the two grand mals while awake, everything really changed for me. I took it all so much more seriously and started to Google videos on YouTube, etc. and found that seeing a grand mal is quite disturbing.
 
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qtowngirl

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yes it certainly is :( for those who deal with watching us major love and kudos to them, it really demands strength.
simples turning complex turning grand mal is quite an ordeal really. usually i'm simple to g.m. but have had a few of all three. the real sticker is if the simple goes over one minute (can even last up to two) then it's almost guaranteed to turn, either into a c.p., g.m. or both. any simples i had that were under a minute didn't go further, but when past about 30 seconds they tend to get stronger so i grabbed a bed or couch just to be safe. and of course the longer and more intense they are, the more fried you are after. tired as hell and just want the day to end. my silver lining is that i work at home so majority of mine have been my own bed or floor.
my partials generalizing didn't usually have a complex in between, proven by both my bf and myself as i'll tell him the last thing i remember and he says yes, it was the last thing before my head rolled back and my body went full boar.
from the sounds of it alot of your complex start with simples, and good to keep in mind that tho it's more likely than not, not 'everyone's' are majorly noticeable therefore may not stick out in your head. pardon the pun ;)
 

pccoder

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I agree with you completely that my simple's are completely unnoticeable unless I happen to be talking in the middle of one, in which case it's 100% obvious that something is wrong because I speak gibberish. My wife thinks it's sort of funny. I hate it, because it means this thing is not under control yet and it'll be that much longer before I'm behind the wheel again.
 
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