Aa
first full seizure February 3, 2009
Where again are responses to my condition?
And suggestions for new meds?
On Tuesday, February 3, 2009 -- I had my first full seizure – after weeks and weeks of emails to MedHelp and no advice – after a kind of environmental hell for a month!!! I was on Tegretol that day and so basically I conclude it doesn't work for me!!!
See Mary’s post on “pulsating hyperacusis.” And mine!
This seizure was brought on by allergies, low blood sugar, and being ignored for hours in the ER…and the effete and rough handling by the local EMS people! Who said “you are NOT having a seizure.”
On this particular day I swore and cursed and raged and finally screamed each time I got close to seizuring – very unlike the real me – but was told to be polite and watch my mouth.
They then transported me to a psych facility and about half way there I said, “take me back to the real hospital”… “I am seizuring”
They then forced me out of their vehicle to walk (100 yds) -- to a psych facility. I told them I could not perform this maneuver and would seizure! They literally pushed me out of the vehicle!
At this point in time I went down and my head flexed and reverberated on the cold concrete … as in my severe muscular contraction two grown men had let go of me!
I told them again that I was now down and my head hurting from the impact and to take me back to the real hospital –they put me in the gurney and transported me finally without making me walk!
All of these posts for weeks now have not gotten a single response!
I knew I was in seizure territory and no one really believed me -- I will never forget that experience -- nor the lack of advice in this column for weeks -- as to what to do about it!
My new neurologist (Doctor Jain) of Las Cruces is not available to give me alternative solutions to "going down" again -- I was on Tegretol when this happened!
Finally, my PCP, Doctor Raquel Neeley of Las Cruces abandoned me yesterday when she would not facilitate re-admittance to the hospital or prescribe alternative meds – but could only say – “go see a psychiatrist.”
I am waiting here patiently avoiding Tegretol and having a very hard time with a loud, color-saturated world that Mary describes and can’t see Doctor Jain until Monday!
What am I missing here to get all of these posts examined and suggestions made?
And suggestions for new meds?
On Tuesday, February 3, 2009 -- I had my first full seizure – after weeks and weeks of emails to MedHelp and no advice – after a kind of environmental hell for a month!!! I was on Tegretol that day and so basically I conclude it doesn't work for me!!!
See Mary’s post on “pulsating hyperacusis.” And mine!
This seizure was brought on by allergies, low blood sugar, and being ignored for hours in the ER…and the effete and rough handling by the local EMS people! Who said “you are NOT having a seizure.”
On this particular day I swore and cursed and raged and finally screamed each time I got close to seizuring – very unlike the real me – but was told to be polite and watch my mouth.
They then transported me to a psych facility and about half way there I said, “take me back to the real hospital”… “I am seizuring”
They then forced me out of their vehicle to walk (100 yds) -- to a psych facility. I told them I could not perform this maneuver and would seizure! They literally pushed me out of the vehicle!
At this point in time I went down and my head flexed and reverberated on the cold concrete … as in my severe muscular contraction two grown men had let go of me!
I told them again that I was now down and my head hurting from the impact and to take me back to the real hospital –they put me in the gurney and transported me finally without making me walk!
All of these posts for weeks now have not gotten a single response!
I knew I was in seizure territory and no one really believed me -- I will never forget that experience -- nor the lack of advice in this column for weeks -- as to what to do about it!
My new neurologist (Doctor Jain) of Las Cruces is not available to give me alternative solutions to "going down" again -- I was on Tegretol when this happened!
Finally, my PCP, Doctor Raquel Neeley of Las Cruces abandoned me yesterday when she would not facilitate re-admittance to the hospital or prescribe alternative meds – but could only say – “go see a psychiatrist.”
I am waiting here patiently avoiding Tegretol and having a very hard time with a loud, color-saturated world that Mary describes and can’t see Doctor Jain until Monday!
What am I missing here to get all of these posts examined and suggestions made?
It was very nice to hear from you. TLE is very interesting and has many diverse episodes. I'm not sure I have exactly the hyper speed, but I feel an odd movie tunnel effect many times. I lose most my periphery and people are moving, but I just see movement not them, difficult to explain. I also have many light auras. The last ones were like fireflies, but indoors. I've decided to embrace these neurological blessings as my meds don't take them away entirely, but I haven't had a full seizure since the meds at least, not when I was awake : )
My son doing ok leg is healing, dealing with seizure med and his other issues, not as well. One day at time, keep breathing. Allison is doing well hope's to be out of the wheelchair soon and neckbrace. She is an inspiration to the Rehab unit. Her memory has greatly improved and is very optimistic about her returning to the medical field.
I am humbled I would be included in your book .Thank you. Best of health . Take care. M
My son doing ok leg is healing, dealing with seizure med and his other issues, not as well. One day at time, keep breathing. Allison is doing well hope's to be out of the wheelchair soon and neckbrace. She is an inspiration to the Rehab unit. Her memory has greatly improved and is very optimistic about her returning to the medical field.
I am humbled I would be included in your book .Thank you. Best of health . Take care. M
5/25/09
Dear George (aka Maureen):
I finally answered your letter today through regular emails....
The question I have for you and any other epileptics is this -- when you have a seizure do you go from normal speed to people zipping around you at hyperspeed....this has NOW happened to me in the ER about 5 times (!!!) -- is this what most epileptics go through -- I mean the velocities of these "real people" go from normal to moving so fast I cannot keep up with what is said or imparted!!!
Also have been down the Maryv dark night path several times and that is a dark, dark light incomprehensible phenomenon!!!!
I can tell when I'm having a seizure by either a lowering or raising of the frequency of the brain – you too?
Were you the first to suggest TLE by reading my symptoms?
Finally a doctor suggested "Temporal Lobe Sz" and I am going for an MRI to determine what is in the brain acting abnormally!!
How are you, your son, your friend!!!!
Ever,
jw harding
PS You are now the very first poem in my next book!!!! = Into the boneyard (again).
Dear George (aka Maureen):
I finally answered your letter today through regular emails....
The question I have for you and any other epileptics is this -- when you have a seizure do you go from normal speed to people zipping around you at hyperspeed....this has NOW happened to me in the ER about 5 times (!!!) -- is this what most epileptics go through -- I mean the velocities of these "real people" go from normal to moving so fast I cannot keep up with what is said or imparted!!!
Also have been down the Maryv dark night path several times and that is a dark, dark light incomprehensible phenomenon!!!!
I can tell when I'm having a seizure by either a lowering or raising of the frequency of the brain – you too?
Were you the first to suggest TLE by reading my symptoms?
Finally a doctor suggested "Temporal Lobe Sz" and I am going for an MRI to determine what is in the brain acting abnormally!!
How are you, your son, your friend!!!!
Ever,
jw harding
PS You are now the very first poem in my next book!!!! = Into the boneyard (again).
yes I meant helmet I tend to fall a lot. Cataplexy is part of the narcolepsy where my body just collapses like it goes to sleep. Life has adjusted my self pitying as the daughter of my best friend of 40 years was in an accident and has a brain injury She is a doctor and was studying for her surgical boards. She is desperately trying to wake up so I can quit my complaining and try to save my brain. I've started a blog if you are interested kind of working through the crazies. thanks so much for your response. Hope things are going ok for you
http://georgebailey-redbirdsintheroad.blogspot.com/
http://georgebailey-redbirdsintheroad.blogspot.com/
Dear George,
Did you get my response – to this post? I guess not!
I suggested you were not self-pitying but courageous!
And venting of course was appropriate!!
And that any choice to get off meds was a highly personal one and therefore uniquely your own.
You seem to be on a lot of meds and therefore reducing any of them makes sense to me…what is catplexy and did you mean to say, “helmet?”
All best,
john
Did you get my response – to this post? I guess not!
I suggested you were not self-pitying but courageous!
And venting of course was appropriate!!
And that any choice to get off meds was a highly personal one and therefore uniquely your own.
You seem to be on a lot of meds and therefore reducing any of them makes sense to me…what is catplexy and did you mean to say, “helmet?”
All best,
john
My best intention at optimism is going by the wayside. I just can't seem to tolerate the seizure meds. My eyes keep twitching and hurt I went to my eye dr and friend for years he said I had swelling probably from the meds or combo. I also saw my sleep Dr. first time since the tle diagnosis. He was going to consult with the neurologist because I also have catplexy and need to continue, zoloft, was trying to lose at least one drug. I just quit taking lipitor at this point my heart seems safe. I guess I am trying to decide to go without the seizure meds and get a helmet. I just want to feel ok again. I have gone 52 yrs without them maybe just knowing what they are is enough. Sorry to be so self pitying I just need to vent without getting the crazy vibe from those around me
"Who what and and where" is right where I am at right now and I just keep ringing a windchime in my bedroom and realize I am facilitating the getting of someone's angel's wings!!!
I was born in the 50's, so I remember the times well,when music was at its best.. It was the Grateful Dead. I don't know if I have the attention span for such a formidable book as Crime and Punishment.
I didn't even mention the hallucinations until I saw the neurologist, but I apparently wasn't very interesting because he just sent me back to my pc doctor which is fine he's nicer and doesn't treat me condescendingly directing all the questions to my husband as if I wasn't there.
.I'm trying the Keppra now as I just couldn't handle the side effects of the lamictal It is just nice to get info and support from this, because my family is a little weary of my blank outs. They call me Who,What,Where and I just figure I use up most my energy to stay focused at work, I work at a school and the kids would wake me up. I work with computers mostly now and they don't seem to mind my staring. I still get to interact with the at risk teens I have a lot of respect for them. You never know what another is going through so my path in life is simple, to be kind. Take care
I didn't even mention the hallucinations until I saw the neurologist, but I apparently wasn't very interesting because he just sent me back to my pc doctor which is fine he's nicer and doesn't treat me condescendingly directing all the questions to my husband as if I wasn't there.
.I'm trying the Keppra now as I just couldn't handle the side effects of the lamictal It is just nice to get info and support from this, because my family is a little weary of my blank outs. They call me Who,What,Where and I just figure I use up most my energy to stay focused at work, I work at a school and the kids would wake me up. I work with computers mostly now and they don't seem to mind my staring. I still get to interact with the at risk teens I have a lot of respect for them. You never know what another is going through so my path in life is simple, to be kind. Take care
Dear Guardian Angel --
A friend of mine saw a bear in his bedroom -- duriing only a high fever -- don't feel bad!
Dostoevsky one of my favoriet writers -- please read Crime and Punishment!
One of my postings says "In a Van Gogh Pain-ting" because basically I was seeing what I remember of his art!!!
I am from the 60's and I can't remember what group sang that song -- but it sure is etched in my brain!
Sense of humor comes and goes for me these days but basically when I feel my worst -- I just rememer George Bailey's bad day!!!
Thanks for considering my book!!!
A lot of 60's and 70's experiences there!
jw harding
A friend of mine saw a bear in his bedroom -- duriing only a high fever -- don't feel bad!
Dostoevsky one of my favoriet writers -- please read Crime and Punishment!
One of my postings says "In a Van Gogh Pain-ting" because basically I was seeing what I remember of his art!!!
I am from the 60's and I can't remember what group sang that song -- but it sure is etched in my brain!
Sense of humor comes and goes for me these days but basically when I feel my worst -- I just rememer George Bailey's bad day!!!
Thanks for considering my book!!!
A lot of 60's and 70's experiences there!
jw harding
Writing will bring you back. It is a catharsis and a gift. I plan to order your book I actually looked you up after your post, very cool. When you said you were a poet it just made me think that seizures are inherently interesting, mysterious, and everyone has a different interpretation, much like poetry. I have been thinking a lot about the seizures and the crazy narcolepsy and it's kind of funny. I have been reading the book Seized by Eve La Plante. It describes famous artists and writers, Vincent Van Gogh, Dostoevsky ( you're in great company) who suffered with TLE. What do I get, not flashes of genius, but vomiting diarrhea and auditory and visual hallucinations. I have been known to answer the remote control and see bears in the neighbor's yard. I have learned to keep the unusual to myself. This health thing is bringing back some humor and insight I seem to have misplaced the last few years. as is so aptly said by the grateful musicians "What a long strange trip it's been"
George Bailey saved me way back in about 1973 when I heard and deeply understood --
"No man is a failure who is a friend."
"Ironic poetry of sezures" is qutie good -- where did you get that?
I have a real live book of poetry published in www.iuniverse.com under the title i"nto the boneyard (again)" by jw harding...I have not written ANYTHING since health problems began in about July of 06! Almost three years!
I am going to take your cue to begin writing again!
All best,
jw harding
"No man is a failure who is a friend."
"Ironic poetry of sezures" is qutie good -- where did you get that?
I have a real live book of poetry published in www.iuniverse.com under the title i"nto the boneyard (again)" by jw harding...I have not written ANYTHING since health problems began in about July of 06! Almost three years!
I am going to take your cue to begin writing again!
All best,
jw harding
You got the reference, I'm sure I have at least one guardian angel. I was just diagnosed in January though it has been a life long problem. I have recently been awaking at night shaking, but I'm aware of it. I don't know if this is a seizure or a med reaction. The doctors mainly were concerned about the complex seizures. It makes me sad I just don't feel right at least not for very long. I had seizures as a child started out frequently and then just went away by 11, now I feel they are going in reverse. I was never on meds as a child because mine have primarily manifested it with digestive symptoms so I had the flu a lot. Thanks for the response. there is some sort of ironic poetry in seizures, oddly enough I kind of missed them when they left me when I was young and maybe I should embrace that.
Are you the George Bailey from "It's a Wonderful Life?" If so then you have a guardian angel just like I do!
I apparently don't react to Lamictal praise god but do react to Cogentin!!!
And my brain a bit messed up too!!!
Used to be a poet!!!
Good luck with any alternative meds!
God speed!
jw harding
I apparently don't react to Lamictal praise god but do react to Cogentin!!!
And my brain a bit messed up too!!!
Used to be a poet!!!
Good luck with any alternative meds!
God speed!
jw harding
I also am on Lamictal and have been having a rough time with it. I've had some small seizures since starting it and every time I work on upping the dosage I get pretty sick and the lower dosage isn't quite doing it. My doctor just has me going slow with it and my neurologist gave me a prescription for Keppra, but am still hoping I can take the lamictal. I also have narcolepsy, so am I on provigil 400 mg a day and ritalin. My body is fine my brain a little messed up.
Dear Zoe:
Seizure free for over a year!
I celebrate that with you!!!
My new neurologist put me on Lamictal -- and I have not had a repeat episode for about week or so!!!
jw harding
Seizure free for over a year!
I celebrate that with you!!!
My new neurologist put me on Lamictal -- and I have not had a repeat episode for about week or so!!!
jw harding
Hi there! I started having seizures when I was 16 and now im 23. So far Ive tried every type of medication and NOTHING has worked for me besides Lamictal. I've been on Lamictal for over a year now and I have been seizure free since! Lamictal shouldnt be used if you plan on becoming pregnant......... It also curbs your appetite which is ALWAYS good in my book!
Good luck!
Good luck!
I have a new neurologist and am flying in the face of fear -- yours is the first comment n over a year -- thanks, George!!!
Right temporal lobe seizures? Do some research on that. It is very frustrating I have quit telling people when I see or hear impossible things. I was finally diagnosed with left temporal seizures, but the meds are rough
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