Re: Re: Adults with seizures ?

[Guest guest]

bug

I'll be thinking about you as you get this sorted out. My younger son

had nocturnal seizures and then developed focal seizures. He was on

meds for about 5 years and now doesn't have to take any. He thinks he

has maybe had a couple of nocturnal ones when he has overdone it.

Hugs,

laurie

> Bug, I had a 30-minute seizure the day after my J-tube surgery, but

> it was most likely set off by caloric deprivation, as they withdrew

> my TPN immediately and I couldn't tolerate much through the J-tube

> for quite a while due to pain. I figure I was getting about 600

> calories per 24 hours. Not enough! Follow-up EEGs have been read as

> normal. I know there are other adults in this group who do have

> seizures.

>

> Hope you can sort out what's going on.

> Barbara

>

>

>

>

> > Are there any Mito adults out that have been dx'ed with a seizure

> > disorder ? I recently had a standard EEG and a sleep-deprived

> EEG,

> > both of which were abnormal. The doc hasn't called back to give

> me

> > her official interpretation, but the copy of the results states :

> >

> > " Several moderate amplitute isolated left temporal sharp waves

> were

> > seen. This increases the risk of focal seizures arising from this

> > region. There was very frequent intermittent left temporal

> > slowing. Temporal intermittent rythmic delta activity (TIRDA) was

> > also seen. Some studies have shown ann increased risk of seizures

> > associated with TIRDA " .

> >

> > All I can say is that I'm glad I was persistent about the resident

> > ordering the follow up sleep-deprived test. He told me my first

> EEG

> > was fine, despite the fact that the Neuro lab stated the results

> wre

> > abnormal and recommended they order the sleep-deprived study. Why

> > does life have to be so darn difficult sometimes ? That resident

> is

> > an idiot and unfortunately, I've had to see him a few times. He

> > seems to be bouncing around between the neuromuscular clinic and

> the

> > general neuro clinic....maybe he should get a job in the custodial

> > dept cleaning toilets...although, he might not be qualified ! My

> > neuromuscular doc agreed with me that the test should be

> > done...thank God.

> >

> > bug

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

>

[Guest guest]

RH

Those who deal with seizure treatment no longer use the word epilepsy,

but seizure disorder. This happened the same time as petit mal

seizures were changed to absence seizures. Grand mal seizures are

suppose to be called major motor seizures, but " grand mal " has kind of

stuck. The goal was to be more descriptive of the many, many types of

seizures.

laurie

> I had a few grand mal seizures (possibly due to Carnitor), but now

> have only " absence seizures " (sort of loss of consciousness without

> falling down). My EEG shows " slow waves " which indicate sleep-like

> patterns while awake. But I haven't been told I have epilepsy,

> just " absence seizures " or " seizure-like episodes " . From what I've

> heard, some stroke-like episodes are pretty close to seizure-like

> episodes, so without an EEG or MRI at the time, it's anyones guess.

>

> But I've never had a sleep-deprived EEG, just regular and 48-hour

> video EEG's, the latter which showed slow waves, absence seizure

> episodes without abnormal EEG activity, and episodes of slow heart

> rate (under 50 bpm at one point).

>

> Take care,

> RH

>

>

> > Are there any Mito adults out that have been dx'ed with a seizure

> > disorder ? I recently had a standard EEG and a sleep-deprived EEG,

> > both of which were abnormal. The doc hasn't called back to give me

> > her official interpretation, but the copy of the results states :

> >

> > " Several moderate amplitute isolated left temporal sharp waves were

> > seen. This increases the risk of focal seizures arising from this

> > region. There was very frequent intermittent left temporal

> > slowing. Temporal intermittent rythmic delta activity (TIRDA) was

> > also seen. Some studies have shown ann increased risk of seizures

> > associated with TIRDA " .

> >

> > All I can say is that I'm glad I was persistent about the resident

> > ordering the follow up sleep-deprived test. He told me my first

> EEG

> > was fine, despite the fact that the Neuro lab stated the results

> wre

> > abnormal and recommended they order the sleep-deprived study. Why

> > does life have to be so darn difficult sometimes ? That resident

> is

> > an idiot and unfortunately, I've had to see him a few times. He

> > seems to be bouncing around between the neuromuscular clinic and

> the

> > general neuro clinic....maybe he should get a job in the custodial

> > dept cleaning toilets...although, he might not be qualified ! My

> > neuromuscular doc agreed with me that the test should be

> > done...thank God.

> >

> > bug

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

>

[Guest guest]

An observation about seizures and MELAS. my mother was diagnosed with

" epilepsy " back when she was about 35 I think back in the 1970's. She would not

have the kind of seizures you think of with body shaking type seizures. She

would just blackout and fall to the floor. She was on Dilantin? and still had

them every couple of months. This went on until 1988 when she had a seizure

like episode where her arm was shaking and she went into a coma and died after a

week.

1994--My then 31 yr old sister had the kind of seizure on the floor shaking.

She went into a coma for 4 days, woke up apparently fine. Doctors blamed it on

a virus encelphalitis they said. When on with life, skiing, decorating house,

doing craft shows, etc.

1996 almost 2 years to the day she went into a coma again for 4 days. This time

her new doc and personal friend went looking for answers. Found mito doc in

Milwaukee 2 hrs away. They went to see him--suspected MELAS, sent blood off to

be tested. meanwhile they went to Florida for trip that had been postponed.

Came back and within a week she had a stroke that left her hard to walk and

mixed up words.

Was recovering and put on anti seizure meds. While on the meds had 10 hrs of

seizures they could not control and she ended up in a coma for 2 weeks.

My son has " absence seizures " where he just stares straight ahead sometimes and

I have been told I do it also once in a while. I can remember a few times where

I have lost " time " .

So, what everyone thought was epilepsy in my mother, sister, and aunt was MELAS

all along.

Janet Sample

Re: Adults with seizures ?

My seizures that I considered " grand mal " were teeth clenching, fall

on the floor seizures. I and my husband have older (in their 40's

now) cousins who have " epilepsy " (or whatever the name is now), so

the " old " terminology sticks with me. But I know there are several

types of seizures that go beyond the original petit mal or grand mal

categories...

The doctors I go to say things like " we need to see if your seizures

are from epilepsy or not " which I guess means if they are due to

misfirings in my brain or metabolic reasons.

The only real seizure specialists I've seen were at Columbia-

Presbyterian. Both there and during a neuropsych eval I had medical

professional witness the seizures, and both said " absence seizures " .

I understand there may be a few more types?

Take care,

RH

> RH

>

> Those who deal with seizure treatment no longer use the word

epilepsy,

> but seizure disorder. This happened the same time as petit mal

> seizures were changed to absence seizures. Grand mal seizures are

> suppose to be called major motor seizures, but " grand mal " has kind

of

> stuck. The goal was to be more descriptive of the many, many types

of

> seizures.

>

> laurie

[Guest guest]

My first seizures were " nocturnal " but I do know that I must have been thrashing

around as I woke my husband up and he called my son as he had no idea what was

wrong with me.

told him I was having a seizure and to call 911 but I woke up before the

ambulance got there

and I wouldn't go to ER. The second one was severe, used the term Grand

Mal as I quite breathing and my lips were turning bluish. He got me breathing

again before the ambulance got there but I didn't wake up (or whatever) for a

couple of hours and when I woke up and was i the hospital I wa furious.

said it is normal for a person to not realize what they are talking about after

a severe seizure? He used to work with a person that had seizures. Now I have

had this stroke epidose the day before my seizure where I lost time so I'm

wondering if this is a sign as to exactly what type of Mito I might have as

every doctor I have seen (except my PCP and she refuses to discuss it unless she

know ehich Mitochondriak DNA are involved?? Oh well, Dr. Welch found something

as the MDA clinic at KU " DID " accept his referral for me based on 32 years of

medical records that Dr. Baker has in his " breifcase " and info obtained thru

labs that Dr. Welch has " snuck " past Cigna, as they will

not pay for anything testing for diagnosis of an unconfirmed illness?? Dr.

Welch said he can't quite figure out how he would be able to get a diagnosis

without testing? Oh well who knows? Dolores

Janet Sample thesamples@...> wrote:

An observation about seizures and MELAS. my mother was diagnosed with

" epilepsy " back when she was about 35 I think back in the 1970's. She would not

have the kind of seizures you think of with body shaking type seizures. She

would just blackout and fall to the floor. She was on Dilantin? and still had

them every couple of months. This went on until 1988 when she had a seizure

like episode where her arm was shaking and she went into a coma and died after a

week.

1994--My then 31 yr old sister had the kind of seizure on the floor shaking.

She went into a coma for 4 days, woke up apparently fine. Doctors blamed it on

a virus encelphalitis they said. When on with life, skiing, decorating house,

doing craft shows, etc.

1996 almost 2 years to the day she went into a coma again for 4 days. This time

her new doc and personal friend went looking for answers. Found mito doc in

Milwaukee 2 hrs away. They went to see him--suspected MELAS, sent blood off to

be tested. meanwhile they went to Florida for trip that had been postponed.

Came back and within a week she had a stroke that left her hard to walk and

mixed up words.

Was recovering and put on anti seizure meds. While on the meds had 10 hrs of

seizures they could not control and she ended up in a coma for 2 weeks.

My son has " absence seizures " where he just stares straight ahead sometimes and

I have been told I do it also once in a while. I can remember a few times where

I have lost " time " .

So, what everyone thought was epilepsy in my mother, sister, and aunt was MELAS

all along.

Janet Sample

Re: Adults with seizures ?

My seizures that I considered " grand mal " were teeth clenching, fall

on the floor seizures. I and my husband have older (in their 40's

now) cousins who have " epilepsy " (or whatever the name is now), so

the " old " terminology sticks with me. But I know there are several

types of seizures that go beyond the original petit mal or grand mal

categories...

The doctors I go to say things like " we need to see if your seizures

are from epilepsy or not " which I guess means if they are due to

misfirings in my brain or metabolic reasons.

The only real seizure specialists I've seen were at Columbia-

Presbyterian. Both there and during a neuropsych eval I had medical

professional witness the seizures, and both said " absence seizures " .

I understand there may be a few more types?

Take care,

RH

> RH

>

> Those who deal with seizure treatment no longer use the word

epilepsy,

> but seizure disorder. This happened the same time as petit mal

> seizures were changed to absence seizures. Grand mal seizures are

> suppose to be called major motor seizures, but " grand mal " has kind

of

> stuck. The goal was to be more descriptive of the many, many types

of

> seizures.

>

> laurie