ADVERTISEMENT

Back-to-back seizures

I started a thread about myoclonic jerks a few minutes ago as well; perhaps it is related to what I am saying in this next post:

Today I had 3 back-to-back seizures inside of an hour. My sz are partials that can secondarily generalize, and when they generalize I don't lose consciousness, but will feel out-of-it along with varying degrees of fatigue for anywhere from a few minutes to a few hours.

So during today's sz I'd barely recovered from one, then another would hit. I was scared, because shortly after my seizures first started 4 months ago (and before I was medicated) I was in status E. and ended up in the hospital for 2 weeks and on IV dilantin for 5 or so days.

Except for lingering fatigue and tension/electricity in my lower back. butt and head/neck, this current "event" has long since stopped. Is this back-to-back "event" a form of status E.? Has anyone else had back-to-back seizures? If so, what was the explanation you were given for what was going on??

Thanks for any help.

Comments

Re: Back-to-back seizures

I think what you're experiencing is cluster seizures.

Here's what Orrin Devinsky, MD --  Director, Comprehensive Epilepsy Center, New York University has to say:

"Early recognition of seizure clusters is critical because therapy can be given to prevent the cluster or limit its severity. Among patients with difficult-to-control complex partial seizures, those with seizure clusters are more prone to prolonged seizures (status epilepticus). When clusters involve moderate to strong seizures that are numerous or occur over a short interval, the seizures are likely to be followed by a more prolonged postictal state of tiredness, confusion, and possibly other problems such as weakness or depression. Diastat (a seizure medicine given by rectum) or Ativan (given under the tongue or swallowed) are treatments that are often used to stop clusters. "

When was the last time you were at the neurologist?  Do these clusters occur anywhere near your menstrual cycles?  (Those crazy hormones!)

Why don't you try to keep a daily seizure diary: noting your sleeping patterns, what you eat, your activities, any emotional upsets, the time of your period, how you feel before (auras?) your seizures, during and after, plus the duration of the seizures.

This could help the doc get a better idea of what you're going through and recommend testing or a change in meds.

Please make an appointmemt NOW... Good luck to you.  Let us know how you do.     Phylis Feiner Johnson   www.epilepsytalk.com

Re: Back-to-back seizures

Thanks Phylis,

By your verbage you must be a doc.  Thanks for taking the time to write.  Cluster seizures.  Heard of them but thank God I had never had to deal with them before.  Ha, I am male so my mentral stuff probably does not factor in here.  Big tough men are not SUPPOSED to scare easy, but Mon&Tues had me begging God to make the seizures stop.  I need to keep Dr Daseiff updated, work on relieving the stress and all this recent seizure activity will fade away.

Again, thanks for caring.  God bless you and yours, Stan

Re: Back-to-back seizures

Whoops!  Pardon the menstrual part. (LOL!)

Nope, I'm not a doc, just a normal mortal who wrote copy about health & wellness for 12 years.  So, I've got pretty good researching skills.  Sometimes it takes a lot of time to find some kind of answer...sometimes I never succeed.  But I do try to help...that's what I'm here for.

Good luck!    Phylis Feiner Johnson   www.epilepsytalk.com

Re: Back-to-back seizures

LOL! Thanks for your help, Phylis. To answer your question, it is not "that" time of the month for me. My seizures do get worse around then, but nothing can explain this current occurrence. I've kept a seizure diary since this all began, and as soon as i think i've identified a trigger, something blows it.

Re: Back-to-back seizures

What about auras?    Phylis Feiner Johnson    www.epilepsytalk.com

 

Re: Back-to-back seizures

Yes, I get auras. I always get them before a more general type of seizure. I'm reluctant to call them Generalized Seizures (capitals intended) because I don't lose consciousness - I can be dazed, but I don't conk out. For the seizures that a more of a partial type, sometimes I get a tingling or tension feeling in my arms, legs and across my chest, but it is mild and if I am busy I think I might miss the warning sometimes.

Sometimes the auras can be what I call an "on the verge" feeling that is present for most of the day along with a strong sense of simply "knowing" I am going to have a seizure. These sensations will suddenly increase in intensity just before a seizure, and the tingling in my arms, legs and chest is much stronger than for the partial seizures. The seizures resulting from these sensations almost always are more generalized. A couple of minutes to seconds before the seizure, it feels like my right foot goes numb, then my toes start flexing, then my feet start regularly moving, like a "beating" movement, followed by my arms/hands beating as well (sometimes just the left). Then my feet will suddenly tense right up (while still trying to "beat") and the tension travels up my left leg, into both glutes and then into my upper torso and my left arm/hand (and very occasionally the right hand). Sometimes my upper torso even beats, like doing mini ab crunches (so small that an unknowing observer probably wouldn't notice). My head has turned to the left at some point, and sometimes I am aware of jerking eyes. After 2-3 min it very quickly dies down. After a bad one like this, I can't move (or maybe it is just too much effort to move) for 5-10 min, and I feel dazed and tired.

Phylis: My case has proven very confusing to the current neuro. because my routine EEG and MRI are normal, and the fact that I don't conk out during what seem like generalized seizures. It is a 2-year wait for a video EEG here in Canada. My own research shows consistency with what I have and frontal lobe seizures. What are your thoughts??

Re: Back-to-back seizures

Geeze.  You have to wait 2 YEARS and be your own detective-doctor in the meantime?  Are you at least on meds?  Do they help at all?

Here's what I found in a scholarly study in Elsevier, sponsored by EFA, available online at sciencedirect.com. (A terrific resource.)  It seems to support your cluster seizures as frontal lobe, if a bit difficult to decipher...

"Various studies have addressed risk factors for being a ‘‘clusterer.’’ A commonly considered risk factor is epilepsy...particularly frontal lobe epilepsy which demonstrated to be associated with seizure clustering, although this is not present in all studies. In descriptive reports of frontal lobe epilepsy seizures were described as ‘‘tending to cluster’’ in 50% of patients.

Another risk factor for clustering appears to be seizure control. Patients with more intractable epilepsy appear to be at higher risk of experiencing seizure clustering...."  http://www.epilepsyfoundation.org/epilepsyusa/yebeh/upload/Feb_Haut_art.pdf 

I'm sure not a doc, but you seem to be putting the pieces together better than anybody else.

I sure wish I could help more...    Phylis Feiner Johnson    www.epilepsytalk.com

 

Re: Back-to-back seizures

Thank you for your helpful reply and the website link.

For seizure control I was initially on 10 mg clobazam/frisium 2 X per day; helped somewhat but by no means stopped the seizures. Then I was tried on 1 mg clonazepam twice per day: no help at all. Now I am in the midst of tapering onto Lamictal, I'm currently at the 50 mg twice per day stage. I'm not sure if I should be expecting any seizure control or not at this early stage. The goal is to get me to 100 mg twice per day for a month, then re-evaluate. The tapering-on process is so slow; I can appreciate the neuro's choice for this drug, as it is one that has some of the fewest side effects, but at least with the others you can start in right away at the full dose in order to obtain seizure control. I guess there are trade-offs to everything!

Thanks for your compliments on my researching! I am afraid the neuro's may either take offense, or decide that I am reading so much about seizures that I am "inventing" symptoms to report (my family doctor told me this - she respects my ability to do research, but said some doctors do not for this very reason). I live alone and spend a fair bit of time alone, so, except for the seizures early on that my mom witnessed, all my reports about what happens during a seizure are based on what I personally experience. Apparently this creates problems in the diagnostic process, but I don't lose consciousness so what's the big deal about a witness?! I don't like to have seizures in front of anybody anyway!

I really appreciate your input, Phylis. I hope you have time to add further comments to my post!

Re: Back-to-back seizures

Hi Stan, (WHY did you ever pick that other moniker?)

I LOVE LAMICTAL!  I've been on it for 2 1/2 years with no side-effects.  I take 300 MG in the AM because it made me crazy hyper in the PM, but for some people, it has the opposite effect.  Do you know much about Lamictal?  At its lowest level, it's an anti-depressant...at its next level, it's an anti-depressant and anti-seizure med...and at its highest level, it's for bipolar people.  (That would not be me.)

That I supplement with Klonpin which is an anti-seizure, anti-anxiety med.

I've had epilepsy for 40+ years, I almost died in September '08 and finally, I've found my "magical med mix."  I know the titration is tough.  When I got off Dilantin and Pheno from the hospital, I had to start my Lamictal dosage from scratch and I was not a happy camper.  But the reason for that is to prevent nasty side-effects like Stevens-Johnson Syndrome.  (Look at my article: Steven’s-Johnson Syndrome — a danger for those on Dilantin or Lamictal  that will explain it all.)

As far as docs are concerned, my step-father was a surgeon and he believed himself to be a demi-god.  Many are treated like one and many develop the attitude. Not too many docs want to be "partners" in your health.  It makes them uncomfortable and makes them feel threatened.

Here are my general suggestions for going to the doc:

Be prepared

Make sure you keep a daily seizure diary. Each time a seizure occurs, write down the time, the type of seizure it was and how long it lasted. Write down any major stresses or recent life changes that could trigger seizure activity. All of this can help your doc can get a better idea of what’s going on with you. Also, seek input from people who may observe your seizures — including family, friends and co-workers — so that you can record information you may not know.

Bring along a family member or friend to help describe your seizures or to take notes during visits to your doctor. They can offer support and a second pair of ears. Plus, they may remember something that you missed or forgot. (Or maybe your particular doc will at least believe them!!!) A second set of ears along with someone else there taking notes, can be invaluable after your visit.

And let your doc know how you’re responding to your current medications. Be sure to share your concerns about any side effects, drug reactions, behavior changes, physical changes, trouble sleeping, loss of memory, or even brain fog. Accurate reporting will help you and your doctor make decisions together about a treatment plan that works for you.

Come armed with questions

Preparing a list of questions in advance will help you make the most of your time with your doctor. List your questions and the doctor’s answers from most important to least important in case time runs out.

Be persistent in asking your questions until you fully understand the explanation. If you don’t understand a diagnosis or treatment, ask more questions — take more notes.

Make sure you understand the script and whether name brand or generic will make a difference to your condition. And make sure you know exactly what the doctor wants you to do before you leave the office.

Ask about follow-up and get a contact number so if you happen to think of more questions, or forgot something the doctor told you, you can call the office immediately and request the information.

And if the doctor gives you the bum’s rush, or doesn’t respond to your questions, don’t hesitate to ask for a second opinion or else find another doctor who will work with you and care.

My (not so) humble thoughts for the day...    Phylis Feiner Johnson   www.epilepsytalk.com

 

Re: Back-to-back seizures

Mastergen,

Sorry to hear your dilemma.  I am sitting here recovering from a series of seizures that occurred Monday and

Teusday.  Every waking moment those two days I was either in a myclonic or partial complex or "walking on

eggshells" waiting for the next one to start.  Have had seizures(the whole array) most of my life(I'm 57).  For

most of my adult life the seizures have been almost non-existant(by God's grace) through different theraputic

anti-convulsants.  This series of non-stop "baby" seizures I experienced Mon&Tues was very frightening.  About

two weeks ago I had 3 tonic clonic seizures in a 24-hour period.  That prompted a Dr. visit and he added Pheno-

barbitol to my Lamictal. All this activity has followed a period of 10 years or so of averaging one or two nocturnal

seizures-a-year.  Never had a daytime seizure in that 10-year period.  When I got ahold of my doctor yesterday

(Wed) following those two days of repetitive, non-stop seizures, he instructed me if this ever happens again I am to go to the ER and they have been instructed to give me an IV of Ativan to stop the series.  He also upped my phenobarbs.  I am feeling much better today(Thurs).  Just a little spacey-headed.

Hang in there.  Don't push yourself.  And keep communicating with your doctor.  Both of us hit a pothole and it scared the you-know-what out of me.  Hopefully, both of us are on the other side of this rough spot and pretty soon this will be a distant memory/nightmare.

One more note.  My trigger for seizures is and has always been stress.  Probably no coincidence a messy job/financial situation has had me stressing out the past several weeks.  Ya think?  Find your "trigger" and avoid it.

I will pray to God for you.  Please do the same for me.

Thanks for being there.  stanrainbolt@live.com anytime you need to write. 

 

Re: Back-to-back seizures

Keep a diary like phylis suggested!  The diary really helps because when I see the doctor.  I can remember everything.  If things are bad during the week I can call the doctor and medication can be changed.

Clustering is what I get!  I had 3 seizures last night. I have liquid valium when I need to take it.

 When they first started it scared me, I would go unconsious.  I would be out for a long time.   I have had 2 surgeries and a vagal nerve stimulator and when they occur. I do not get that effect of going unconscious for a long period of time now.  Now I exercise more and eat better and the seizures are a lot better.  The effects of the seizure are better too.