I've been lurking for a while here, and have really appreciated the
comments and contributions made by everyone. I've hit a bit of a
brick wall in my own walk, and would appreciate any thoughts, input,
or suggestions. I'll try to make the background brief:
I'm 44, male, diagnosed as "Nocturnal Epilepsy".
Had experiences where everything looked "far away" as a kid, and was
on dilantin. The problem went away when I was a teen.
15 years ago I had a daytime classic seizure: flopped on the ground
like a fish then jumped straight up. No memory of it; it occurred
when talking to someone with whom I had a great deal of stress. Went
to the doctor -- found nothing, prescribed no meds, and no other
seizures until about 2 or 3 years ago.
Now, seizures are ONLY at night.
Bite the crap out of my tongue (even with a specially made
bite-guard).
Seizures occur once every few weeks -- at night, never a memory of
one, with going stiff while grinding teeth and drooling.
Currently use a c-pap machine for sleep apnea.
Here's the kicker:
I had pneumonia, we believe after aspirating (breathing in saliva
during a seizure), and spent 11 days in the hospital - 7 of which were
in intensive care. That was in October. While there I had 3
different seizures and each time I had a heart "pause" of anywhere
from 8-15 seconds. The docs thought it was just because I was so
sick.
Well, I had a sleep study done last week and would you believe that
this time they FINALLY caught a seizure on video and recorded the EEG
and the EKG! Well, lo, the seizure occurred first, then followed by a
heart pause of 15 seconds, with the heart starting itself no problem.
I woke-up, no memory, no one said anything, and didn't hear a thing
until talking to my neurologist later in the day!
My neuro says that the seizure causes the heart pause, not the other
way around, and has set-up for me to see a well known neuro specialist
at MCV in Richmond, Virginia, as well as a well-known cardiologist at
MCV. I'm going to the cardiologist next week to see about the need
for a pacemaker...
I'm currently taking:
10mg Norvasc
12.5 mg hctz
12.5 mg Paxil
50 mg Topamax twice a day (just started last week)
I should add that a seizure is usually preceded and/or followed by a
feeling that something horrible is going to or has happened, but I
just can't remember what it is.... like a deja vu sensation. It
really can be quite horrible!
I've been on the Topamax for about 10 days, and I can't seem to
remember my own name! Is it the med, or is the neuro correct that
each seizure causes brain damage to the memory portion of the brain?
Anyway, I've tried other meds (Keppra, etc...) but they either didn't
seem to work or I couldn't tolerate them.
I do have a fairly stressful job and family life, which I guess
doesn't help.
I don't drink at all, on the orders of the doctors (but would like
to), and don't take any recreational drugs.
HELP! Anyone have any suggestions? Anyone heard of the heart pauses
associated with seizures?
Thanks in advance!
Randy
G. - 27 Dec 2006 03:24 GMT
> I've been lurking for a while here, and have really appreciated the
> comments and contributions made by everyone. I've hit a bit of a
[quoted text clipped - 8 lines]
> Seizures occur once every few weeks -- at night, never a memory of
> one, with going stiff while grinding teeth and drooling.
*** It's more common for some of the seizure types to occur during
sleep as our guards are down more then than during wake state. If
you're damaging the bite-guard (occlusal splint?) then some of them are
fairly strong. I initially only needed those replaced each ~8 months
for first 2 years. Last one I've had since ~1997, although my szrs. are
controlled now. /
> Currently use a c-pap machine for sleep apnea.
>
[quoted text clipped - 5 lines]
> from 8-15 seconds. The docs thought it was just because I was so
> sick.
*** Pneumonia is likely not related, although it can weaken the body,
and so lower your seizure threshold and might make milder (controlled)
seizures easier to break through and become stronger. /
> Well, I had a sleep study done last week and would you believe that
> this time they FINALLY caught a seizure on video and recorded the EEG
[quoted text clipped - 14 lines]
> 12.5 mg Paxil
> 50 mg Topamax twice a day (just started last week)
*** The last 2 pills and Anti Ep Drugs (AEDs), although they could be
used for other things. U.S. Ep. Foundation has a medications glossary
within http://efa.org where it might have more detail on those 2
pills, how to use them etc. You could try the first 2 in the glossary,
but I haven't seen those mentioned here from 1998 to now.
With most of these pills though it's important to take them at the
rate the Dr. has recommended and not miss or skip doses. They depend
on a 'level' dose rate in the blood, and if they do bloodwork, they are
assuming you are taking the rate they set out. If the levels they
expect are lower than they want as the target, they could raise dose to
try reach it. So skipping any could result in too high a dose level.
Also while some pills make it up to therapeutic level for you, some
can take a number of weeks' use to reach that, so another reason to
follow the rates they've recommended. /
> I should add that a seizure is usually preceded and/or followed by a
> feeling that something horrible is going to or has happened, but I
> just can't remember what it is.... like a deja vu sensation. It
> really can be quite horrible!
*** Within that site, you could look under Simple Partial seizures or
Auras -- that's what the Deja Vu feeling is. Your's (and mine)
originate in the Right Temporal Lobe, and that's the area that produces
the Deja Vu sensation. *Older name for that type of seizure was
Temporal Lobe seizures, but newer sites often list the symptoms under
Complex Partial seizures. The main difference from the Simple Partial
(Aura= feeling of deja) and the CP is the latter often ends in loss of
consciousness, while the SP can occur, be disturbing and pass without
full onset./
> I've been on the Topamax for about 10 days, and I can't seem to
> remember my own name! Is it the med, or is the neuro correct that
> each seizure causes brain damage to the memory portion of the brain?
*** Damage to the Temporal Lobes can affect (short term) memory. I had
thought that idea of each seizure causing brain damage was an 'olde
wives' tale' or some of us here would be in pretty rough shape. Some
people around here have had szrs. since childhood and are as sharp as
any other adults I've ever met.
Some of the Medications* though, while getting to a target dose,
can produce a spaced out feeling, and might interfere with clear
thinking while you got used to it. There might also be some things
(like alcohol) that should be avoided with each pill type. The
Pharmacy should have given you a page with any of those, but the Med.
Glossary under above site might list some others for the particular
pills. /
> Anyway, I've tried other meds (Keppra, etc...) but they either didn't
> seem to work or I couldn't tolerate them.
>
> I do have a fairly stressful job and family life, which I guess
> doesn't help.
*** Lack of sleep or stress can lower our seizure threshold (increase
risk of a szr. if we were prone to one). So that's correct. /
> I don't drink at all, on the orders of the doctors (but would like
> to), and don't take any recreational drugs.
*** Best to stay away from it for now. Some pills can be boosted by
alcohol while others can be shut off and stop working. While they look
for a solution, it's best not to add any complications to the mix.
*Once they've been controlled and extent of severity (for the referrals
you mentioned for further tests), the Neuro who does those can tell
you if that's something to permanently avoid or whether moderation
might be allowed. Personally I'd rather not have the Seizures than the
Chivas if I had to make a choice. /
> HELP! Anyone have any suggestions? Anyone heard of the heart pauses
> associated with seizures?
> Thanks in advance!
> Randy
*** I haven't heard of above recently (here), but others might have
comments wrt. the other pills you are prescribed, and have experience
to share. Some might be away over the holidays, so check back over
next week and after the Holidays in case the less frequent posters have
something to add.
It sounds though that you've got a good set of Referrals coming up
-- between the Cardio doctor and the Neuro Doctors, I expect they'll
find the best fit for which is happening first and how to control that.
The second symptom might then just disappear when the first is
controlled (by pacemaker or other solution).
Make sure you 'report back' too, how things turn out, even if
it's successful.... Lots of people read this group and get value from
our experiences and successes here. It also gives them confidence to
pursue diagnostics that might help *them get control of their seizures
too, especially if they're from sources they hadn't thought to have
checked. Good luck with this. G. /
howdydave - 27 Dec 2006 17:02 GMT
> > I've been lurking for a while here, and have really appreciated the
> > comments and contributions made by everyone. I've hit a bit of a
[quoted text clipped - 132 lines]
> too, especially if they're from sources they hadn't thought to have
> checked. Good luck with this. G. /
Howdy Randy!
I also have epilepsy and use a CPAP for apnea.
I have had short heart stoppages recorded at the sleep center
but these were due to the apnea and not the epilepsy.
I would disagree with G. about the dread/deja vu corrilation.
In my experience they are totally different. One is a sensation
of familiarity and the other is a feeling of dread. Both are due
to simple partials but the sensations are differeent.
Dave
Jim - 30 Dec 2006 14:56 GMT
> I've been lurking for a while here, and have really appreciated the
> comments and contributions made by everyone. I've hit a bit of a
> brick wall in my own walk, and would appreciate any thoughts, input,
> or suggestions. I'll try to make the background brief:
>
> I'm 44, male, diagnosed as "Nocturnal Epilepsy".
I was never dianosed with Nocturnal Epilepsy, but about seenteen
years ago all my seizure activity became nocturnal. At first I would
lose all bladder control until Primidone 500 m.g. 2x a day was added
to my Dilantin therapy and that stopped it as far as losing bladder
control. However, I still had low level seizure activity during the
night and I would realize it in the morning because I would have tiny
blood blisters on the inside of my lower lip. When I was switched to
Depakote ER, I would still find them ocasionally, but not nearly as
often as when I was on Dilantin and Primidone alone. I'm on Lamictal
now and since I began that this past Summer I've had zero blisters in
my mouth. I've been lucky enough not to need a mouth guard and I never
had anything else happen other than the small blood blisters which
would disappear on their own during the day.
> Had experiences where everything looked "far away" as a kid, and was
> on dilantin. The problem went away when I was a teen.
[quoted text clipped - 66 lines]
>
> Randy
partials - 03 Jan 2007 20:13 GMT
> <trimmed> Went
> to the doctor -- found nothing, prescribed no meds, and no other
[quoted text clipped - 7 lines]
>
> Currently use a c-pap machine for sleep apnea.
Is that c-pap a consequence of this most recent sleep study and only since then
or was the study that resulted in that use quite some time ago?
> Here's the kicker:
>
> I had pneumonia, we believe after aspirating (breathing in saliva
> during a seizure),
Why that explanation? Couldn't you simply have caught pneumonia? and I assume
from that explanation that it was bacterial and not viral pneumonia?
> and spent 11 days in the hospital - 7 of which were
> in intensive care. That was in October. While there I had 3
> different seizures
at night or ?
> and each time I had a heart "pause" of anywhere
> from 8-15 seconds. The docs thought it was just because I was so
[quoted text clipped - 3 lines]
> this time they FINALLY caught a seizure on video and recorded the EEG
> and the EKG!
What were your oxygen levels?
> Well, lo, the seizure occurred first, then followed by a
> heart pause of 15 seconds, with the heart starting itself no problem.
[quoted text clipped - 6 lines]
> MCV. I'm going to the cardiologist next week to see about the need
> for a pacemaker...
You don't suppose that the heart stoppages have been happening for years and
have just been discovered now?
> I'm currently taking:
>
> 10mg Norvasc
> 12.5 mg hctz
> 12.5 mg Paxil
I'd avoid that Paxil myself. The minute I mentioned depression. the doctor was
immediately offering to write a prescription. I turned him down.
> 50 mg Topamax twice a day (just started last week)
>
[quoted text clipped - 5 lines]
> I've been on the Topamax for about 10 days, and I can't seem to
> remember my own name! Is it the med,
All anecdotal evidence appears to point in that direction, at least it plays a
definite role. People who stop taking meds describe a lifting of the mental
"fog" they were under.
> or is the neuro correct that
> each seizure causes brain damage to the memory portion of the brain?
The underlying neurological condition also plays some role, but I'm surprised to
hear what you say was being offered to a patient as an explanation for
forgetfulness.
> Anyway, I've tried other meds (Keppra, etc...) but they either didn't
> seem to work or I couldn't tolerate them.
A common experience among us all. I've run the gamut myself.
> I do have a fairly stressful job and family life, which I guess
> doesn't help.
[quoted text clipped - 4 lines]
> HELP! Anyone have any suggestions? Anyone heard of the heart pauses
> associated with seizures?
Sounds like you're scheduled to see some pretty heavyweight medical help in that
regard.
Capri - 03 Feb 2007 03:24 GMT
> I've been lurking for a while here, and have really appreciated the
> comments and contributions made by everyone. I've hit a bit of a
[quoted text clipped - 43 lines]
>
> I'm currently taking:
> I should add that a seizure is usually preceded and/or followed by a
> feeling that something horrible is going to or has happened, but I
> just can't remember what it is.... like a deja vu sensation. It
> really can be quite horrible!
Whoa Randy!
That paragraphed jumped right out at me!
I have nocturnal seizures as well but they are pretty well controlled
with Topomax and Tegretol.
Sometimes I'm not even aware ot the seizure but I sure as hell am
aware of this
feeling of utter helplessness and dread. There is a certanity there
that something extremely terrible is going to happen. Generally If I
don't do something which is impossible. At first I thought they were
just nightmares but I could never remember them at all, I even kept a
pencil and pad of paper next to the bed for awhile Oh, I also have
this feeling that I must get outside as fast as I can. After waking up
wandering around the front yard in just my undershorts I started
wearing pajamas to bed.