Scared

[garfield33]

I started having complex partials about a year ago after being seizure-free for over 10years. I came off of dilantin last summer and started having these in September. I have one about every 5 weeks like clockwork. My neurologist started me on Keppra (bad mood side effect) and switched me to Lamictal. He increased my dosage about 30 days ago because my blood levels were a little low.

Yesterday I had a very strange complex partial around 2PM. It came on after a few auras throughout the morning. I had missed taking my meds that morning (first time missing ever and I remembered that morning but couldn't go back home to get them). I took them when I got home around 1PM.

This one involved me thinking I was dying (like the rest) but I was really out of it. I went to get a drink of water (for some reason I think that will help). then I tried leaving the house. I got in my car (no keys) tried to put it into gear, etc. My wife convinced me to get out and I went downstairs, then back up, then back down and went into our wall-in closet doorway and held the doorknob. My wife told me to let go but I told her I wasn't holding it. finally my wife and mom got me to sit down and they laid me back and my mom (a nurse) checked my BP (180/6.

I fell asleep for several hours and woke up with a terrible headache.

These things scare me. My main symptom is the overwhelming feeling that I'm about to die (lights are gonna go out). Everytime I they happen I tell my family I love them because I honestly think this is "it". My wife told me that yesterday I told her "I think this may be it".

I know all cases are different, but the thought of dying from one of these scares the crap out of me. Is it possible for me to have sudden death from a complex-partial?

Could missing just ONE dose of meds trigger this? I also didn't get much sleep the night before.

Do complex-partials typically escalate into more severe seizures?

thanks any and all for the advice in advance.

[petero]

don't be afraid of dying- it is our only salvation
there are attempts to "control" seizures and that's all that is possible
it's like terrorism in the world: pieces of al Qaida could be wiped out but there will always be a gradient against democracy somewhere in the world - and our brains are the terrorists against our own freedom
death is freedom

[garfield33]

don't be afraid of dying- it is our only salvation

death is freedom

I'm not so much afraid of dying as I am leaving my little girl and wife. That's what really has me worried.

[Nakamova]

Missing a dose of meds can sometimes provoke extreme responses. The meds are powerful, so stopping them suddenly can be a bit of a shock. I's a bit like suddenly throwing off all the covers in bed -- it's colder than if you slowly peeled them off one by one and got used to the temperature at each step. It's VERY unlikely that a Complex Partial would result in sudden death though. More likely is that the fear you're experiencing is in itself a kind of seizure. (Seizures that originate in the temporal lobes can sometimes take the form of sensations of anxiety or fear or confusion). If the symptoms/sensations you are having continue or escalate, get in touch with your neurologist.

[Endless]

Hi, Garfield,

Nakamova is right. Fear is an emotion that often goes along with epilepsy. You may be interested in this thread. It involves some people who have pretty extreme forms of fear, and hallucinations as well. This probably doesn't apply to you. But it also goes into the scientific reasons why seizures and fear often happen together. The links to the fear information are at the bottom of the post.

Fear of death since last seizure

The string also goes into Sudden Unexplained Death in Epilepsy. There is a chance of sudden death in epilepsy, but it is very remote. You have bigger odds of going from some other disease. And everybody faces that, not just people with epilepsy. I really wouldn't worry about anything.

[drarvindr]

"The feeling of impending doom" as it's described in the med books is classical of an aura(complex partial) , as well as the doing stuff repeatedly (walking up and down, feeling blank as you do things , not really knowing why you're doing them) for no rhyme or reason (have done it myself several times before a seizure). It's called a walking automatism. tell your family not to stop you if they notice this because often patients tend to get violent when they are forcibly stopped . The violence is usually unintentional (you may punch the air but are unlikely to hit your family - but its better to be safe)
As regards the drugs it is slightly uncommon to seize immediately after skipping a dose but you mentioned your blood levels were low and it can take a while for them to build up. The other possibility is that lamotrigine (lamictal) induces its own metabolism on prolonged treatment ( it causes itself to wash out of your system faster). this often necessitates increasing your dosage to improve your blood levels (as happened with you a month back).Often neurologists precribe a small dose of valproate to counter this problem as valproate and lamotrigine increase each other's levels
Hope this helps , try not to worry too much
Arvind

[garfield33]

Thanks to Nakamova, Endless and drarvindr. you all have done so much to calm my fears and realize that the feeling of impending death could in and of itself be a symptom of my seizures.

I have made and appointment with my neurologist later this month to see if he wants to do anything.

Again, thanks to all three of you. You are awesome.

[garfield33]

just a follow-up.....

I had my appointment with my neurologist today. He listed to what had happened with my last episode. He explained that it is possible for me to have a seizure with only missing a single dose. He said if I am reliant on my medicines like that then I may need to go on an extended release medicine (big $$$)

He increased my lamictal to 300mg 2x per day (up from 250 2x per day).

I asked him about how I had been on Dilantin for 10 years with no problems. These partials started about 4 months after going off of dilantin. He told me Dilantin isn;'t the best drug to be on long-term but if the lamictal doesn't do the trick then we may "take a step back" and go to dilantin.

He also told me about the implant for the nerve stimulator and epilepsy surgery. The surgery talk scared me a bit. He said it has the potential to eliminate the seizures im having. He partially explained the procedure (which sounded rather daunting).

Any advice on this? My plan right now is to increase my lamictal. If I have another espisode I may try going back on Dilantin. I am also considering going back to my old neurologist to get his opinion ( I moved, hence the new neurologist).

Any other suggestions? The seizures I'm having are very frightening and my BP is high and I'm having a lot of PVCs. The scared part of me is thinking that whatever misfire in my brain may be affecting my body's regulation of BP and heart and could be very dangerous. Is that silly to think that???

Thanks all. You are all so great to be able to talk to openly. Merry Christmas!!!!

[momof3boys]

Im glad you got to see your doctor. I would go along with what he says to do, and take the increase in Lamictal. See if things improve. If they dont, let your doctor know. I was on Carbatrol for over 12 years and after having my first video EEG in march of this year, I had lots of simple partial seizures, and not any grand mal seizures, or complex partial seizures I was use to having all my life, so my doctor put me back on Keppra, and didnt add the Carbatrol back. He wasnt comfortable leaving me on it for a long period of time, since it can cause lots of bad problems if on it for too long. Luckly for me, the Keppra is holding me good. I take 3000mgs a day, and was switched to the Keppra XR. One thing that did suprise me is that the Keppra XR is cheaper than just the Keppra. I thought it was going to be the other way around! But I was paying $150 for a 6 month supply of Keppra, and when my doctor switched me to the Keppra XR, I am now paying $100 for a 6 month supply. So, not all XR medications are more expensive. If I were you, I would check with your insurance and see what it would cost. You may end up like me, and get it for cheaper!

[garfield33]

Thanks for the fast reply!

I checked and my insurance will charge $100 for a 90-day supply of Lamictal XR (2x 200mg) and another $100 for a 90-day supply of 2x 100mg Lamictal XR. I will need both since my dose is 300.

So, about $65 per month for the XR....not too bad...

[jyearta]

just a follow-up.....



I asked him about how I had been on Dilantin for 10 years with no problems. These partials started about 4 months after going off of dilantin. He told me Dilantin isn;'t the best drug to be on long-term but if the lamictal doesn't do the trick then we may "take a step back" and go to dilantin.

I have been on Dilantin for over 40 years now. There have been times that Dr. have tried me on other medic. --dilantin is a old medic. is what I was told.

I wish I could tolerate another medic. however Dilantin and clonazepam have my seizures well under control. Yes I do have side effects from these two, but this is what works best for me.

I'm able to have a life with these two medic.

I so hope your Dr. finds the right medic. for you.

Merry Christmas and have a Happy New Year

[momof3boys]

Thats not that bad. We go through blue cross blue shield, but have to go through Express Scripts for a 3 or 6 month supply of medications. I take 500mg tablets of the Keppra XR. They charge me $100 for a 6 month supply, I take 6 pills a day, so 180 a month, which would be 1,080 pills for a 6 month supply. I just wish they would accept savings cards!

[Sandylu]

I was initially told I had complex partial seizures (I had two abnormal eegs in the past year), but since a trip to the hospital for continuous video monitoring because seizures increased and were out of control, after they took me off all seizure meds, I only had one "event" and I was told it was a psychogenic non-epileptic seizures. I am pretty sure the topomax I was on was not working and perhaps caused some other problems. I have had a lot of recent stress, but I am confused about the abnormal eegs before the hospital. FYI, I had a stroke several years ago and the abnormal eeg activity is always in that area, the right frontal lobe. I know this can affect judgment and reasoning. Almost all of my seizures were preceded by a fear of dying. My first seizure, a little over a year ago, was in my sleep. I have heard you can't have psychogenic non-epileptic seizures seizures in your sleep, and reading the above about fear of death auras, plus two abnormal eegs make me wonder if my seizures were epileptic, or psychogenic non-epileptic seizures. Any thoughts?

[garfield33]

Hi Sandylu,

I of course an no expert but my take would be that you may be having panic attacks rather than seizures. The symptoms can be similar as far as the feeling of "impending doom" (dying) and they can happen in the middle of the night.

With your history of stroke, stress and concern over possible epilepsy, panic attacks all very possible. Do you have any repeated movements during these "episodes" like lipsmacking, chewing, swallowing, picking at clothes, saying the same thing over and over? If not then they don't sound like complex partials (but im no expert)

PLEASE, PLEASE don't take my observation as any sort of diagnosis but just consider it and perhaps ask your primary physician. My personal opinion is that doctors in their field of specialty like to only focus on what they do best vs the possibility of another cause.

God bless,

[Sandylu]

Yes, I have had lipsmacking, pulling at clothes, etc. In fact, my primary care neurologist before the hospital witnessed one event and told my husband who was with me that I was having a seizure. (this was my first "complex partial" so it kind of freaked him out. The one in the night and one about a year later that brought me into the neurologist were both tonic clonic in nature. However, most "events" have been described as fitting complex partial. I also eliminated my bladder on one ongoing "partial complex" that turned to tonic clonic. I was also told that scar tissue from strokes can create seizures, even years later. This is why I am confused and afraid the hospital just missed something (maybe in addition to panic attacks?) I really appreciate your input though. The more I learn especially from people with a valid diagnosis of epilepsy and doctors / experts, the more I will feel like I really know what is going on. I'm not eliminating the psychogenic non-epileptic seizures, I just want to know if something was missed.

[garfield33]

NO worries. I'm sorry I may have misread your info! Obviously those aren't panic attacks (well most of them anyway).

I would also advise that it is always fine to get a second opinion. Another doctor may run the same (or different) test and that may help put your mind at ease as well. It's also good to let those around you (family, friends and even coworkers) know what is going on. Knowing that they are aware of your condition and can be there for you when (and if) they happen can be a comfort. Obviously most of us are not in control at these times and even experience memory loss afterwards. Knowing that someone is there for you in those times and is ready can be very good for you.

All the best and good luck finding out what is going on. Just remember; you aren't alone. Always remember that. This board is a great place to ask questions and get real-life observations.

[Sandylu]

I appreciate your comments, Garfield33. It took me awhile to reply because I was absorbing what you said and sorting my feelings. My primary neurologist does have two abnormal eegs and thinks it might be a mixture of epileptic and non-epileptic seizures, and is in a "wait and see" mode since discontinuing topamax. It was just the hospital who totally dismissed me and blamed it all on psychogenic non-epileptic seizures. I thought they (the hospital) had a copy of the eegs, but just found out today they didn't. I probably won't get a second opinion as I like my primary neurologist, it was the doctors at the hospital that have had me totally confused. During the time of "dopimax" and the worst of my seizure activity, which I am just starting to be a lot clearer mentally from, everything was confusing, especially when getting mixed messages. No matter the cause of the seizures, these "events" were real, and I am now convinced more than ever that most were epileptic in form. (This was even and especially after talking to a new therapist a few times - hospital's recommendation no less.)