I have beeen sick dealing with more seizures since Jan 6th and haven't been able to get on as much--

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epileptic_Cajun
Regular Member


Date Joined Dec 2004
Total Posts : 45
   Posted 2/25/2005 12:44 PM (GMT -7)   
Hi all,

I just want to apologize to all of you for my absence and insight.

I have been felled with Grand Mal seizures and that in combination with my Absences and CPS have made me really sick.

I have had my medicine checked twice since then. They can't touch the Neurontin, because it is maxed out at 3600 mgs, but they had room to move with the Depakote.

I was taking 750 mgs for the longest time, and on Jan 6th, I had a MASSIVE TC that lasted 4 minutes, caused me to turn a dusky color, wuit breathing for some of the duration, was drooling. You know what a TC looks like.

I had it in my mom's bathroom while she was in there. This is what she told me--She was actually on the throne and had to jump up with her pants still down around her ankles to grab my arm, so I wouldn't fall and hit my head on the ceraminc tile floor. I shook from head to toe, my eyes were bugged out. Before I lost consiousness, the last thing I remember is her asking me if I felt alright, because she said I didn't look right.

The next day the doc increased the Depakote to 1000 mgs.

3 weeks later, I had series of them (partial) sitting in the McDonald's in Wal-Mart. It started with a SPS, then went into a CPS, and then a TC.

Then a week later, I had another Grand Mal sitting in the bleachers at a friend's b-ball game, which was real interesting.

Then during the Superbowl, I had a series of Absences with a CPS added for entertainment.

Then this past Tuesday, I had another Grand Mal and they increased the Depakote to 1250 mgs, and I am starting to finally feel better, again.

I hope I will be able to stay with you and not be unable to participate with all of you.

Again, I am sorry, and feel bad that this happened.

Nancy
31 years old--born with epilepsy--undiagnosed for 30 years. Suffered bad abuse by dad causing repeated head injuries, 3 brain infections, 4 severe concussions, and scarring on the mesial surface of the LTL.

Initially diagnosed in April 2003, was confirmed on March 9, 2004, after a 9-day stay in the EMU.

Diagnosed with a sub-type of TLE called Mesial Temporal Lobe Epilepsy Syndrome with Amygdala-Hippocampal seizures.

Epileptic auras, Simple Partial, Complex Partial and Secondarily Generalized Tonic-Clonic seizures.

Diagnosed with JAE (Juvenile Absence Epilepsy)--produces Absences as main seizure type, and Primary Generalized TCs.

Born with Myoclonic seizures as a result of birth mother drinking, smoking, doing hard drugs, painkillers etc. Went through drug withdrawal just after birth, and the seizures stayed with me.

Have failed 7 other drugs.

Taking Depakote-1250 mgs and Neurontin--3600 mgs

--TAKE WHAT YOU CAN DO AND DO YOUR BEST WITH IT!!!!


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 2/26/2005 5:13 PM (GMT -7)   
Nancy, so sorry that things have been so rough for you! Hoping the neuro can figure something to help manage your seizure better....

goodwitch46
Regular Member


Date Joined Feb 2005
Total Posts : 241
   Posted 2/26/2005 7:43 PM (GMT -7)   
Nancy-
Sorry you feel so crummy... hang in there. You don't have to apologize for anything....just take care of yourself and do the best that you can. We care about you- come back and let us know how you are doing... Glenda
complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d


epileptic_Cajun
Regular Member


Date Joined Dec 2004
Total Posts : 45
   Posted 2/26/2005 11:20 PM (GMT -7)   
I have been feeling better, no seizures other than annoying auras since the dose was increased MOnday.

My epi can't give me certain drugs, because they will either toxify my liver ior interact hugely wiht the other drugs I take.

Depakote is the only drug I can take that will control not just the Myoclonics and Absences, but the Partials aswell, to some extent. THE CPS seem to be a bit resistant to drug therapy and have been deemed as intractible/infractory.

THe Neurontin is to aid in the control with them, and thus the twice as high usual adult dosage.

THey are trying to stablalize me, but after not being diagnosed for 31 years, and being misdiagnosed for many other illnesses throughout my life. I am going to be 32 in July and have 2 syndromes that have multpile seizure types to them, and no way out.

I go to Barrow Neurological Institute in Phoenix AZ. it is either the second or thrid BEST neurological clinic and hospital in the country.

Was finally able to get my MedicAlert bracelet today, and that to me is a real sigh of relief to know that verything is a phone call away.

I really appreaciate all the support.

I feel human all week, and I haven't for months.

Nancy
31 years old--born with epilepsy--undiagnosed for 30 years. Suffered bad abuse by dad causing repeated head injuries, 3 brain infections, 4 severe concussions, and scarring on the mesial surface of the LTL.

Initially diagnosed in April 2003, was confirmed on March 9, 2004, after a 9-day stay in the EMU.

Diagnosed with a sub-type of TLE called Mesial Temporal Lobe Epilepsy Syndrome with Amygdala-Hippocampal seizures.

Epileptic auras, Simple Partial, Complex Partial and Secondarily Generalized Tonic-Clonic seizures.

Diagnosed with JAE (Juvenile Absence Epilepsy)--produces Absences as main seizure type, and Primary Generalized TCs.

Born with Myoclonic seizures as a result of birth mother drinking, smoking, doing hard drugs, painkillers etc. Went through drug withdrawal just after birth, and the seizures stayed with me.

Have failed 7 other drugs.

Taking Depakote-1250 mgs and Neurontin--3600 mgs

--TAKE WHAT YOU CAN DO AND DO YOUR BEST WITH IT!!!!


mercyme
Regular Member


Date Joined Feb 2005
Total Posts : 310
   Posted 2/28/2005 4:22 PM (GMT -7)   
Hi nancy, My heart goes out to you. I dealt with epilepsy for 30 years of my life. But on june 11,2002 I underwent a right temproal lobe lobectomy to remove a mass of scar tissue from the right side of my brain that had been causing the seizures all these years. I had complex partial seizures. I have had a couple of auras since my surgery, but no full blown seizures. neurologist say that the auras are simple seizures. I will be celebrating my third anv. in June of this year of being seiuzre free! I hope that they can help you out at the clinic in az. I went to charlottesville Va. to the University of Va. they have a great neurology clinic there and by the Grace of God my life has forever been changed. I wish for you all the best!

Cindy

epileptic_Cajun
Regular Member


Date Joined Dec 2004
Total Posts : 45
   Posted 2/28/2005 5:54 PM (GMT -7)   
HI CIndy~~

Unfortunately for me, my epilepsy is a bit more complicated than that.

It wasn't EVER diagnosed, nor was it ever trreated. In fact, it was misdiagnsoed for other things my whole llife until last March.

I have partially intractable epilepsy, where the seizures are resistant to some meds, but not all.

I have Simple Partial seizures (full-blown and auras), Complex Partial seizures, and secondarily Generalized TCs.

That epilepsy syndrome was caused by head injuries, by child abuse, by concussions, from scarring, from 3 brain infections etc.

I have misfiring in the deep anterior portion of my L Temporal Lobe, and in the Amygdala and Hippocampus, thus making surgery too high of a risk, because their focus originates in more than one area.

This is a syndrome, but not genetically. It is here to stay, and will never go away. I can never stop taking meds and will always have to take them at high doses to even touch it. I am not a surgical candidate, because of this and the multiple foci.

I also have Generalized seizures.

I have a syndrome called Juvenile Absence Epilepsy, and it carries Absences and Grand Mals.

I also have Myoclonics.

Because there is generalized activity of ANY kind, that automatically bounces me out of any surgical options, including VNS.

So, all they can do for me, is to keep checking my blood levels, and feeding me more than one med.

I go for check-ups every 6 months, jsut for a med check, basically.

I have an epileptologist, and he KNOWS what he is doing. VERY bright man. He is supposedly ranked as the 7th best doc in the country for neurology.

2 of his colleagues are respectively #4 and #7.

THe clinic I go to is called Barrow Neurological Institute---Epilepsy Program, and it is Comprehensive.

The institute is ranked either 2nd or 3rd in the country, so you know you are ge tting good care at that one.

I wear a MedicAlert bracelet. Not some fake dealy, but the real deal.

Nancy
31 years old--born with epilepsy--undiagnosed for 30 years. Suffered bad abuse by dad causing repeated head injuries, 3 brain infections, 4 severe concussions, and scarring on the mesial surface of the LTL.

Initially diagnosed in April 2003, was confirmed on March 9, 2004, after a 9-day stay in the EMU.

Diagnosed with a sub-type of TLE called Mesial Temporal Lobe Epilepsy Syndrome with Amygdala-Hippocampal seizures.

Epileptic auras, Simple Partial, Complex Partial and Secondarily Generalized Tonic-Clonic seizures.

Diagnosed with JAE (Juvenile Absence Epilepsy)--produces Absences as main seizure type, and Primary Generalized TCs.

Born with Myoclonic seizures as a result of birth mother drinking, smoking, doing hard drugs, painkillers etc. Went through drug withdrawal just after birth, and the seizures stayed with me.

Have failed 7 other drugs.

Taking Depakote-1250 mgs and Neurontin--3600 mgs

--TAKE WHAT YOU CAN DO AND DO YOUR BEST WITH IT!!!!

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