Back-to-back seizures

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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

Submitted by phylisfjohnson on Fri, 2010-10-01 - 08:07

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

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

Submitted by Masterjen on Fri, 2010-10-01 - 11:48

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

Submitted by phylisfjohnson on Fri, 2010-10-01 - 15:33

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

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: <a rel="bookmark" href="http://epilepsytalk.com/2009/10/17/stevens-johnson-syndrome-a-danger-for-those-on-dilantin-or-lamictal/">Steven’s-Johnson Syndrome — a danger for those on Dilantin or Lamictal</a>  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   <a href="http://www.epilepsytalk.com/">www.epilepsytalk.com</a>

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

Back-to-back seizures

Comments

Re: Back-to-back seizures

Submitted by phylisfjohnson on Fri, 2010-10-01 - 08:07

Re: Back-to-back seizures

Submitted by Masterjen on Fri, 2010-10-01 - 11:48

Re: Back-to-back seizures

Submitted by phylisfjohnson on Fri, 2010-10-01 - 15:33

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