inability to speak

[Jayrpt]

I recall waking up one morning and hearing a familiar voice but I was never able to answer it. No matter how hard I tried, I couldn't respond. I wasn't fully awake because I don't remember seeing anything. I have had 2 grand mal seizures in my life while I was asleep (never had an inability to speak before though) and I clearly know that I had them from the soreness that followed. The morning that I couldn't speak, I was not sore after. Is this experience related to my temporal lobe epilepsy?

[Bernard]

Hi Jayrpt, welcome to the forum.

Could it have been sleep paralysis?

[brain]

Jay

I sometimes have trouble speaking,
or can't speak at all, or even worse,
my speech is slurred, jumbled, don't
make any sense, no one has a clue
what I am saying and I could be passed
easily for someone for having stroke,
but as the time progresses, it goes
away after the seizure.

Some of the Keypoint signs are:

1) feeling body aches
2) feeling confused, dazed
3) loss of memory or feeling tired
4) feeling the need to sleep even though
you had slept all night
5) can stagger when walking
6) can loose bladder/bowel control

A Neurology Nurse informed me this that
these were signs of Nocturnal Epilepsy,
and usually happens right when your body
enters into the sleep mode or coming out
of the sleep mode.

I admit I was astonished when I learned of
this; as I never knew of any of these things.
She actually sat down to explain it all to me,
as I spent my entire life with this as it terrified
me since I was a child She did tell me it's different
from Narcolepsy. Mine showed up on video EEG and
EEG's.

Had you ever had video EEG and/or EEG performed?

[Jayrpt]

Yeah thanks Bernard. Thats exactly what is was... Sleep paralysis. I had auditory hallucinations shortly after waking up. Looks as if a most people experience sleep paralysis at least once in their lives. Its amazing how the mind functions.

Brain-
Yeah I've had multiple EEG's and an MRI. It showed that I had inflamation of scar tissue in my front temporal lobe. This caused me to have auras all my life without the seizures but...
my epilepsy has gradually worsened and grand mal seizures now follow my auras. When I have a seizure while sleeping, I don't have any warning signs but I suffer most of the key signs that you have listed following the nocturnal seizures Brain.

Luckily my seizures are controlled with 450 mg of Dilantin that I take daily.

[brain]

JAY:

Have you scheduled an appointment with
your Neurologist to go over with what you
are experiencing currently? If not, then you
should.

I used to be on Dilantin / Phenytoin along with
other anti-epileptic drug's in the past. But Dilantin I've been
on for many, many years. It was the Oral
Surgeon who wanted me off of Dilantin has it
wrecked a havoc on my teeth and he wanted
me on "newer" anti-epileptic drugs as they were available.

I still call Dilantin the "spare tire in the trunk"
because it is "old faithful" - as it works; and
is a anti-epileptic drug to fall back to in case if anything
fails. It was hard for me to give up Dilantin
after being on it for so long (from 400 mg to
600 mg - depending on what combo I was on
back then).

If you are not happy with the way things are
working out then you can always see another
Neurologist.

[Jayrpt]

I'm confused when you say only 450mg of Dilantin because I've been told that that level is high. I don't have the greatest rapport with my neurologist but he is prob among the best neurologists in the country and I definately trust him. I had started on 325 mg's of dilantin and had one seizure. My dose has been increased a few times but now I am steady on the 450 mg's. The only time that I will have a seizure now, is if I am not compliant with the 450 mg. (Happened once, learned my lesson).

I see the dentist 3 times a year rather than 2 and my dentist is comfortable with me being on the dilantinand I am too so far.

I am scheduled to see a new neurologist though (wait times for my old neurologist are too long) and I will definately inquire more about my medication. I trust that, as long as I am compliant with the 450 mg's of dilantin, I will not have a seizure.

Thanks for you're concern though Brain.

[brain]

JAY:

Everyone's different with the medication
levels, no worries at all. Sorry if my post
came across to you confusing, I will re-
edit it to make it a little more clearer.



I was just wondering because more and
more Neurologists / Epileptologists are
turning to newer medications today due
to less side effects than the old medications.
But the old medications are still around, I'm
on Klonopin which is an old medication.

That's why I am just wondering. I've had
some Neurologists in the past who just
refused to be "updated". (Believe it or not
there are some who are like that)

If you've got a great rapport and have a
wonderful relationship going - stick with it
by all means! Those are hard to come by!

[Bernard]

It's not the #mg a person swallows that determines if the dose is high or low. It's the concentration of the drug in the blood stream that is important. Different metabolisms, body sizes, etc. will play a role in that. You need a blood test to determine if your blood-dilantin is in the therapeutic range or toxic.

I was just wondering because more and more Neurologists / Epileptologists are turning to newer medications today due to less side effects than the old medications.

Don't be so sure about that. Patents don't last forever. Old drugs like Dilantin are not as profitable as newer drugs that still have valid patents. Can you really name a new drug that doesn't have side effects? Dilantin's side effects have been pretty tame compared to some of the other drugs Stacy has tried.

At the heart of the various investigations into drug industry marketing is the question of whether drug companies are persuading doctors — often through payoffs — to prescribe drugs that patients do not need or should not use or for which there may be cheaper alternatives.

As Doctors Write Prescriptions, Drug Company Writes a Check

and

Pharmaceutical profits come before consumer wellness

[brain]

Can you really name a new drug that doesn't have side effects?

I have absolutely no side effects with:

*Dilantin, Mysoline, Klonopin, Zonegran

And I've been on very high dosage on some
of them - like Dilantin 900 mg (300 mg x 3)
for 2 years by itself (Mono) - and my blood
was at toxicity range but I showed no signs
of toxicity at all. And my range was 70! Far
beyond the normal range, more than tripled
the normal range - but I was peachy, finer
than a frogs hair ~ my EEG's were coming out
pretty good.

But it was another HMO neurologist (thanks to my
ex's constant change of HMO's) who saw that
and cut that out and bought me down to
200 AM and 300 PM, and then down to 200 x 2,
and my EEG's were back to abnormality again.

Another example is Zonegran 500 mg (200 mg
AM / 300 mg HS ) - and I was way up through
the roof it was at 62.1!

I could scan that as that was a recent lab work
and show that as a living proof - that just
because you're way out of the league in the
lab work results and in toxic range; doesn't
necessarily imply or mean you're in toxic
zone. I had no side effects at all. I did not loose
any weight; suffered nothing.

Heck - I think I will scan that lab report later
and post that section in here just for an
example and I was actually doing superior at
that level than at Zonegran 400 mg (200 mg x 2),
as I was more livelier and more in sync and
better yet - more like myself! However, with
the Folic Acid added to the picture along with
Klonopin that was already there, it all helped.

The main reason why my neurologist lowered it, he
was looking at it at the long run - he didn't
want the run the risk of the meds to develop
a tolerance to Zonegran. Even though I had
no reactions to it.

Mysoline - is on a stand by, if ever my body
develops a tolerance to Klonopin (which it is
known to do and can be a problematic issue
for "aging people")

*Dilantin - been on it the longest (Klonopin is
the second med right behind Dilantin with
Mysoline not too far behind), the only thing is
the dental issue, the health wise overall - no
side effect, if they pulled all my teeth out and
put dentures in - I would be back on Dilantin in
a heartbeat.

Face it - my body is plain old WEIRD!

[Bernard]

I have absolutely no side effects with:

*Dilantin, Mysoline, Klonopin, Zonegran

Might be true for you, but those meds all have side effects that are widely reported/experienced.

[brain]

Might be true for you, but those meds all have side effects that are widely reported/experienced.

That's why I posted to JAY that
everyone's medication is DIFFERENT.

Everyone reacts differently to medications.
Just like I have allergic reactions to
Phenobarbital, Tegretol, Trileptal & Keppra.

However if you had been reading up since
I think 1997 when they (all those involved
with Epilepsy research and studies) are finding
that older medications - due to their side
effects; which are damaging to the body
to which it's been discussed many times
and posted many times all over ~ the
pressure is on to make anti-epileptic drug's more safer
with less side effects and less damaging.

Then in 2001 the pressure was really on
to push for the newer medications, but
they weren't eliminating the old medications
as they were still working, they wanted to
reduce them or minimize the usage of them.

That's why it was hard for me to "let go of
Dilantin / Phenytoin" - it was like a 'security
blanket'.

However on the FLIP SIDE:

I am watching KEPPRA also known as
Levetiracetam - as the side effects of that
from FDA keeps growing.