> Sorry, Bill, I'm confused and docs are too, I think. Next weekend I will
> enter hospital for video/EEG which we hope will answer ?? I had AVM in
[quoted text clipped - 14 lines]
> briefly.
> Dianne
Bill,
Never had prob with insomnia until July stroke. Then horrible problems,
which have improved a great deal. My GP thinks that is more consistent
with stroke. At time of stroke I was on 100 mg. Lamictal t.i.d. with fair
control. Nothing has ever given me much control except tegretol. After
many years it began giving me a seizure which mimicked Menniere's disease.
Ain't this seizure life grand! At stroke neuro added topamax, working up to
200 mg t.i.d. and weaning off the Lamictal. At present, I am down to 100.
mg. daily of Lamictal. Post surgery, who knows what they'll prescribe. For
awhile it looked like success with this regimen, but last week I had a
cluster of 3 or 4 seizures. after a clean 6 weeks.
> Diane,
> Hope your doctors can help you without making problem worse. 36 years is a
> long time to be suffering with uncertainty Do you have any problems
> sleeping at night? I've had insomnia for the past ten years that has
> reached the point where I only sleep 2-3 hours per night and lay awake the
> other 5-6 hours.
*** Did they ever do tests like a sleep deprived eeg or even altering some
of the meds. (below) to see if you were having minor seizures during the
night, so waking you up? That doesn't have to be e.g. a Brain Tumor or
other things causing the szrs. but our guards are down during night and my
Dr. said if I was prone (to a seizure), there's more chance of it happening
then than when I'm alert.
(I wondered if the multi years you described were because of nocturnal
seizures that were undetected all that time.) /
> I've only been aflicted for 1 1/2 years and am already going crazy trying to
> rationalize whether my symptoms are due to stroke, seizure, or a combination
> of the two. One of my MRI was interpreted as chronic infarct (or repeated
> stroke) while the remainder (about 4) have been read as most likely low
> grade glioma (brain tumor). The only absolute in my case is shared opinion
> that surgery is out unless I want to end up as a chef salad.
*G* Did they tell you which area of brain the mark is on? Often the area
that might be affected will produce a particular seizure type. If you know
the name of that, it saves time if you're searching through First Aid links
or other sites for information specific to your type. /
> Switching vein, what are you taking as AED? I'm on Dilantin and Keppra. My
> symptoms immediately improved when I added the Keppra which reinforced
> opinion that I'm having seizures but the return and predictable nature of
> the seizures relative to exercise and time of day leaves my neurologist
> suspicious that CNF or blood circulation is catalyst
*** ??? Increased exercise will increase your blood flow, so the rate the
medication gets purged from your blood. The Dr. should have known *that.
I don't know how e.g. changes in blood pressure etc. would affect some of
the anti-ep meds. I was only able to use Dilantin for about 8 months as it
didn't produce reliable seizure control for Complex Partial type (Temporal
lobe) seizures. It was developed in ~1930s, and for those that can use it
is the cheapest, as the research costs were recovered long ago.
I've seen others 'here' who've used or are using Keppra, but I never
have for above CP Seizures. Perhaps one of them will tell us which seizure
types it's used for.
Many of the medications might need to be taken twice a day or another
rate to keep a level in blood that works. Many of us use Controlled Release
types that will keep that blood level stable over longer periods.
Some medications will reach a Plateau where they'll give stable control
for 6-12-18 months, then might need a slight adjustment or possibly a second
med. added. Last adjustment I've needed for above CP Seizures was 1996.
Last seizure I had was June 98. (That only matters since the Neuro told me
in 1993 to hope for 1-2 seizures per month as a hoped-for target, based on
MRIs and EEGs they had run. ) G. /
> Sorry to ramble on. Best wishes with your elected course of treatment.
> Regards, Bill
[quoted text clipped - 12 lines]
> > controlled, mirroring itself in the Left temporal lobe. In fact, the Sept.
> > "stroke" began with a seizure of similar nature to old ones, but
definitely
> > different. Long, long aura, short duration, more control. The good part,
if
> > he removes the RT offender, the left brain seizure resolves
itself..nothing
> > to mirror. Pretty cool, huh? Sorry to run on, but it is hard to describe
> > briefly.
> > Dianne
**G* I don't have Bill's older post still up on my reader. There are
several of us with Right T.Lobe seizures. I was able to control mine with
medications. Not all of us need surgery to get full control. That would
depend on the seizure type and cause. Your's sound more organic (tumor?)
based, while mine were from Encephalitis damage to Rt. T.Lobe. /G.
Reb - 15 Dec 2004 01:49 GMT
Hi,
After 11 yrs of misdiagnoses (blood sugar, head injury, insanity...the
usual) a CT scan picked up a large arteriovascular malformation in my RT
temp lobe. Removed in 1978. Remission for 8 yrs. of all seizures. Never
have had a grand mal since. Just a lifetime of sudden intense "morning
sickness". Now we are not sure. Prob scar tissue at surgery site. GP
convinced of stroke. I'll let you all know the outcome of videoEEG
findings and surgery. He is confident of Rt TLE, but not sure what other
causes could be. I am lucky to have found you all. Comparing notes sure
does help! Thanks.