What is happening here?

[walksalot]

I usually had 15 to 20 seizures a month, absence, simple partial, complex partial, for over 20 years. But August 16 I had a grand mal seizure and then I went 61 days without any seizure of any kind. On October 16, I had a small grand mal seizure that involved only my right leg, but since then I haven't had any seizure of any kind.

It's weird, too, but both of the grand mal seizures happened late a night. I also knew about a minute ahead of time that I was going to have one and that it would be a grand mal seizure. I knew that I needed to get to someplace that I had a lot of room to lay down before I fell down. Does anybody else know far enough ahead of time to prepare for one?

I need to know something else, too. Before the August 16 seizure, one night my husband said I had seized for an hour and a half about 5 minutes apart. All I can remember about that is my head feeling crushed and it getting so hard to breath and my chest hurting so bad. When each seizure finally started, my head and chest quit hurting and I could finally breath again. But if I had so many seizures for that long, wasn't that a state of status epilepticus? I 'm so new to grand mal seizures, I don't know if I should go to the hospital if this happens again or not. I didn't die, so maybe it's not that big a deal. Somebody give me some good information. Thanks.

 

[hawke86]

Keep a diary of when these seizures happen so you can show your doctor. Anytime you have a severe seizure or they happen to often you need to see your doctor or go to the E.R. . I hope your seizures get under control.

 

[skillefer]

Hawk is right.....keep a diary. I have only grandmals. And the next time you seize for an hour with only 5 minutes between each seizure, I'd be calling an ambulance.

 

[walksalot]

I've kept a diary of my seizures for over 20 years and still do, even what I eat, what I smell, what I feel, how cold or hot I am. My doctor's office has my file in folders numbered 1, 2,3,4,etc. When I applied for Social Security Disability 14 years ago, it was granted without question. But, when I told the CNP about the repetitive seizures I had that night, she pretty much scoffed about them. When I had my very first grand mal seizure I didn't know what I was in for and my husband called the ambulance to take me to the hospital. All they did for me there was put an IV in and keep me there all day. They knew what was going on but I didn't. So I told my husband if that happened again, don't take me to the hospital. So, he didn't. He was doing what I told him not to do. He and I were both really stupid. We both know better now.

 

[Crazy Monkey]

I had something similar back in August/September this year, I have had absences for about 20 years then all of a sudden in bed my legs seemed to have a life of their own, this has now happened 3 times and they are getting bigger each time, but every time that it has happened I was then seizure free for about a week, which was very unusual as I have absences every day.

 

[alivenwell]

Do you take generic drugs? They may be switching from one generic company to another generic company for the drugs and causing breakthrough seizures. If your pills look different, that's probably an issue for you. Some states in the US have passed laws that state a pharmacist has to tell you when they switch from generic to brand, generic to another generic company, and brand to generic.

 

[walksalot]

Crazy Monkey
I was really wondering if something like that ever happened to anyone besides me. I'm not happy that it happened to you, but I'm happy to know I'm not alone, if you know what I mean. But still I wonder what causes us to go seizure free for a period of time afterwards.

I was switched from Lamictal to depakene back in March (to try to save money- I'm on Medicare Part D) and right before Easter I had my very first grand mal seizure. I believe it was the depakene switch that did cause my first grand mal seizure. My CNP at Ohio State Neurology Clinic told me to stop the depakene immediately and go back on Lamictal. I did that the next time to take my pills. So the depakene should have been out of my system by August when I had so many seizures at one time. The combination of Lamictal and Topamax have been the best RX I've been on so far and I don't want to try a generic again. I know it's expensive, but if it controls my other seizures this good, it's worth it. I guess I can handle a grand mal seizure every now and then. It looks like once you get them, you're stuck with them.

 

[TeeTees]

Hi walksalot,

In response to your other question - I know with time before I have a sz.....I get 'auras' which usually consist of a sudden burst of temperature, and a sense of somebody turning down the volume slightly around wherever I am so that I know I have to concentrate on me. I can also get a 'taste' such as the sensation when licking the bottom of a battery.

All these different feelings/sensations I kind of see as being my 'guardian angel' as I can at least get myself to a more private and safe place.

Some people hate aura's, some people see 'em as blessings. I think I'm lucky in that matter.

 

[Crazy Monkey]

There maybe something else similar here -

I have taken Lamictal for about 8ish years, earlier in the year my neuro added in Ethosuximide, which I stopped taking in July as it wasn't working out, about a month later is when the larger seizures started happening and I was wondering if it was the last of the Ethosuximide getting out of my system, I haven't had any larger seizures for a few weeks but I do now get a lot of myoclonic jerks which is something I never had before. If you read back on my 'started threads' you will see the discussion I started at the end of August

 

[walksalot]

The aura's I get just before I have a grand mal seizure make me feel like I'm being closed in on and I need to get out. It's like I'd be inside an egg shell and have to break out. It seems to last a long time, but that might be only long enough for me to warn someone that I'll be having a seizure. I remember telling my husband to get out of my way or he'll get hurt.

I have myclonic jerks nearly every day, but I think everybody on earth has little jerks every now and then. It's just that epileptics have them so much more. It's really funny on the days that they seem to consume me, it's hard to drink a cup of coffee or eat a bowl of soup. My cat thought I was hitting her once and she slapped me. Most of my jerks affect the right side of my body.

 

[drarvindr]

For pity"s sake ! Avoid this in the future!

Dear walksalot,
YES IT WAS STATUS EPILEPTICUS. It is a serious medical emergency. Tell your husband to call an ambulance after 5-10 minutes of continuous seizure activity( this INCLUDES seperate seizures occuring back-to-back). The definition is 30 minutes , i know but by the time the EMTs get to you it may be too late - so please , 5-10 MINUTES. This can cause serious brain injury if untreated. Please be careful.While i was amused , the definition of healthy is NOT " I didn't die".IT IS A BIG DEAL.
I'd also recommend your husband take an emergency first aid course if he's not had one already. Please don't be reckless. Please don't follow the "irrukodugal tatvam" when it comes to your health. ( BTW Irrukodugal tatvam is an old indian riddle, literally translated means "the lesson of 2 lines" : Q:" how do you make a line smaller without touching it ? a: you draw a bigger line next to it"). So don't draw a bigger health issue . You've got enough to deal with. Gt well soon

 

[walksalot]

Thank you for confirming that fo rme. I don't mean to sound like what I'm going to say, but I believe I am surrounded by ignorance. My mother-in-law who didn't believe me at all, and who is 89 and believes she is a doctor herself. She comes from the backwoods of West Virginia. She and my husband have an Elvis Pressley relationship. My husband also believes he is knowdgeble about epilepsy since he has lived with me having this since I was about 24. He wouldn' t take a course if I pleaded for him to do so, but he has agreed to take me to the hospital if this occurs again. His defense has been that I had asked him not to take me to the hopital if I ever have a grand mal seizure again. Although I was having repetitive seizures, he held to my request not to take me.

 

[walksalot]

I think I should have vented that paragraph somewhere else. I apologize for that.

 

[drarvindr]

No need to apologise. venting is what forums are for. You may want to download information on status Ep. Plenty of sites give a step by step approach to what one should do in an emergency ( secure the patient's airway , try to prevent tongue bite , yada yada...). Make it into a flow chart. Don't worry about your mother in law. ALL people think they are doctors. In the age of information that we live in , ignorance can be the difference between life and death. Since this information can one day help save your life , it is mandatory that all those in your house , from your kids to your mom in law , be educated. I had a herculean task convincing my father to get an echo done when he was having palpitations after climbing a flight of stairs. The attitude is " Big deal , so i get a bit out of breath....".He turned out to have cardiac failure. It's the same everywhere. The attitude should be that you should be so prepared that you never have occasion to say " i wish i had learned / tested ...."
Hope things turn out well

 

[walksalot]

Thanks for the support. Since I've "talked" to so many of you here, I've relayed a lot of information to my husband and he's a little more receptive to listening and learning about how this affects me. He won't admit it out loud, but I can tell he realizes he doesn't know as much as he thought he did. He hasn't been to the doctor with me in over 10 years but he has agreed to go with me in two weeks for my next visit. That, in itself, is a milestone. Before, when I've asked him to go, he would say, "What can I tell them that would be any more than what you can tell them yourself?" Well, how can I know myself what I do when I have a seizure??? He's going this time. He operates a one-man automobile dealership, and has to close for the day to take me to the doctor (out of town). But, he might learn something from the doctor and it will mean a great deal to me to have him there.

 

[alivenwell]

Maybe you should relocate to a close proximity to a hospital. They have all the necessary equipment for CPR, oxygen, debrillators.....

I had CPR courses. There's a TEN minute time to get that kind of help before damage occurs to the heart or brain.

 

[paradise survivor]

Saw your post doc and had to jump in- I also had an episode that lasted for a good half hour plus. When I spoke to my doc, I asked if this was something that could do permenant damage? Problem was I didn't get an answer. This has happened on only a few occasions where they last a long time but I was just glad to get to the other side of it. What exactly could an er visit do that sleep couldn't do? I am not trying to be flipant I am genuinley(sp?) curious. I must admit I was completely med free at the time (hate the side effects!!) I have always thought it was more a matter of inconvenience if you will than life threatening. Not asking for a diagnosis, just clarification. The only effect long term that I notice is reduced memory...did I just answer my own question? What can the er do to stop it or reverse it? Still learning after 10 years...onder:

 

[drarvindr]

Here's a clarification:
Mortality rates related to SE have decreased over the last 60 years, probably in relation to faster diagnosis and more aggressive treatment than before.
The probability of death is closely correlated with age.The overall mortality rate was 22% for the entire population, 13% for young adults, 38% for the elderly, and >50% for those older than 80 years.
Left untreated, status epilepticus can cause metabolic acidosis, hyperthermia, hypoglycemia, arrhythmias, hypoxia, increased intracranial pressure, and airway obstruction from the tongue, vomitus, or increased salivation.It may even increase the likelihood of future resistance to anti seizure medication

I'm NOT KIDDING HERE. THIS IS A MEDICAL EMERGENCY. GET TO AN ER STAT. The ER guys give you intravenous antiseizure medication untill your convulsions stop. The earlier they stop , the less chance you have of brain damage.

 

[paradise survivor]

Thanks for your quick reply! Does that info apply even if not convulsing per say. I was in a car at the time (not driving) and I was unconscious for about 30 min plus then repeat several more times. I only remember not recognizing my husband and being terrified - not knowing where I was or who I was with (admittedly not good) oh and 'wet pants' (again not happy!). Sorry I don't mean to impose on you just hoping for answers, I get precious little in my 10minute visit every 6months.

 

[Stacy]

I've been to the hospital 9 times in the last three years and have technically died twice. I agree with the entire "call an ambulance" thing, but have insurance. no one will take me, as I'm too high risk. So when I go, our bills are stacked!....

You work on doing your best to keep them at bay. i'm in full agreement with the journal thing. I always keep one. Good luck and keep us posted.