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The following is a chronological accounting of the
symptoms I've had since the day my journey with a brain tumor began. Following
my surgery on August 23, 2001, and for several weeks thereafter, my record keeping was a
little lax as I didn't totally appreciate the importance of writing down those times
when my body was trying to tell me something. This page is my place to record those
times, much to the relief of my wife and doctors.
The original symptoms that I presented with and
which led to my brain tumor diagnosis were small, focal seizures in my right wrist and
right foot. These seizures consisted of repetitive, involuntary twisting motions. I
would guess the average person on the street probably conjures up images of limbs jerking around
uncontrollably when they think of the word seizure (at least that is what I used to think
of them as). While these types of seizures certainly do occur, the word seizure is also
used to describe sensations that may only be noticeable to the person having the seizure.
A leg suddenly feeling numb isn't going to be recognizable to anybody other than the
person experiencing it. Neither perhaps is the minor shaking of a hand. Yet both of these
sensations may qualify as seizures in a brain tumor patient.
Often when a person with a brain tumor suffers a
seizure, the seizure is preceded by what's known as an aura. This aura can take many
forms. Typical auras can be a strong smell or getting a strange taste in one's mouth.
Another example would be seeing flashing lights in front of your face. At
first my aura seemed to
be that I would get a premonition that I'm about to have a seizure and a few seconds later
I did, almost like a reverse "deja vu". In later months, I would
have different types of auras (feelings of extreme agitation or a wave of
warmth passing through my body from my head to my toes) or sometimes no aura
at all.
August 2001
Sunday, August 19, 2001
I woke up around 5:00AM and quickly noticed I was experiencing involuntary, repetitive
twisting motions in my right wrist and right foot. As I became more awake, I found if
I concentrated really hard I could make them stop. However as soon as my mental focus
shifted elsewhere, the motions started back up again. By 7:00AM, and with the motions
showing no signs of abating, my wife and I went to the local emergency room. (At the
time, we were visiting my mother in Brick, NJ.) Several hours later, I learned the
diagnosis and started my journey.
Flashback: Jan 1, 2001 - May 27, 2001
When I woke up the morning of August 19, 2001, with a twisting motion in my right
wrist, the sensation felt familiar. Much like an old song on the radio or a smell can
bring one back to a specific time and place from their past, the seizures in
my wrist
gave me a strong feeling of "deja vu". Upon reflection, I remembered waking up
one morning in our townhouse in Fairfax, VA, with my hand performing the same
repetitive motion. However, the motion must have stopped as I soon fell back to sleep.
Flashback: August 3-8, 2001
Similarly, when Debbie and I were on a short vacation I distinctly remember
waking up early one morning in our hotel room with my hand performing the
same repetitive motion, but once again the motion must have stopped and I soon fell back to sleep.
August 23, 2001 - September 30, 2001
On August 23, 2001, I had brain surgery (a Vector Vision guided craniotomy) to remove
the tumor. I went into the hospital on Thursday, August 23 and was discharged Sunday,
August 26. I spent the next two weeks at home recuperating and on Monday, September 10
returned to work full-time. During the next several weeks, I experienced many strange
sensations and funny feelings in my head that have since gone away and I
believe (and my doctors have told me) can all probably be attributed to my surgery. For example, in
the first 7-10 days after coming home from the hospital, I felt and thought I heard fluid sloshing around in
my head whenever I moved it around!
October 2001
October 3 & 5, 2001
My notes for these two days simply state "right leg feels weird".
I remembers at the time my right leg felt a little numb, almost as if it had fallen
asleep (but without the pins and needles one gets when waking up a limb that has fallen
asleep). It felt like everything below the knee was no longer there, which sounds a little
scary now that I think about it. Each time this occurred for no more than a minute
(though admittedly I wasn't timing them). At the time, I didn't realize this type of
feeling might signify a seizure. I did not experience any "aura" prior to
either of these seizures.
October 8, 9 & 13, 2001
My notes for these three days simply state "right arm funny". On each of
these occasions, I experienced my "aura" just prior to my right arm (when
I say arm I mean from the elbow to the hand) shaking a tiny amount for just a few
seconds.
The first seizure occurred as I was speaking on
the phone to my father-in-law. I was holding the phone up to my left ear with
my head
pressed against my left shoulder. I brought my right arm around to hold the phone up to
my left ear so I wouldn't have to have my head tilted that way. (It made my neck
uncomfortable to have my head tilted that way, which in my opinion was totally
unrelated to the brain tumor.) As I was bringing my right arm around to the left side of
my body, I had the sensation my right arm was about to have a seizure. Sure enough,
when I looked at my right arm I noticed it was shaking slightly. Since this was the
first time I had experienced my "aura", I looked at my right arm and said
to myself, "What the...!?!". My right arm almost immediately stopped shaking
as if it knew it had been caught.
The second seizure occurred when he and his wife
were watching Mission Impossible 2 on TV. Near the end of the movie, there's the
inevitable final fight scene between the film's protagonist and antagonist. There's a
point where the battle is hand-to-hand combat and one guy is balancing the tip of his
knife directly above the eye of the other guy. It was at this very moment that
I thought
to myself, "Boy, that must take some serious hand coordination." As soon as that
thought ended, I again experienced my "aura" and my right arm started
shaking slightly. It lasted only a few seconds.
The third seizure occurred while I was at work.
I was looking over the shoulder of one of my coworkers who was performing some task on
a computer. I remembers having a hard time knowing what to do with my hands.
I decided
to place my right fingers through the belt loops on my jeans when I again experienced
my "aura". I immediately turned around and walked out of the office looking at
my right hand. Sure enough it was shaking slightly. A few seconds later it stopped, once
again, almost as if it knew it had been caught.
Saturday, October 27, 2001
While walking back to the car with Debbie (after having spent considerable time
standing), I had another seizure in my right leg. Like the previous seizures focused in
my leg, I didn't experience my "aura". I first felt some numbness in
my foot, then the numbness extended from my foot to my knee. I managed to keep walking
throughout the seizure but by this time I was limping pretty severely as I had little
sensation below my right knee. I would guess this seizure lasted about a minute or two.
November 2001
Thursday, November 15, 2001
Shortly after having exercised on a treadmill for 35 minutes at a speed of 2 mph,
I
experienced my first seizure combining the right arm and leg since I first presented
back on August 19, 2001. I experienced my "aura" and then the same familiar
feelings of numbness started in my right leg below the knee. This lasted no more than a
minute when my right arm (elbow to wrist) started shaking and continued doing so for less
than a minute. I noticed the following new, additional "symptoms" during the
next couple of days (see December 11, 2001 below):
once or twice it felt like I was going to be sick
to my stomach and vomit but within 15-30 seconds the sensation went away
several times the muscles in both
my right foot
or right arm felt like they were about to start twitching but no actual seizures
ever
materialized
October - November 16, 2001
During this six week period, and perhaps for a few weeks before, my head
"felt funny" at various times throughout the day. I would occasionally get a
feeling of discomfort in my head (forehead area mostly). This feeling never lasted
longer than a mere second or two and didn't even really qualify as painful. For example,
it never made me reach for the aspirin. The sensation felt like if it had lasted longer
it might have qualified as a mild headache or vertigo. On or about November 16, 2001, the
day I took my final dose of Decadron after having completed the tapering procedure
prescribed by my doctor, these funny feelings went away.
Sunday, November 25, 2001
I experienced another seizure combining the right arm and leg. This seizure was not
preceded by my "aura" and was less severe in duration and intensity than the
one he had on the 15th. My leg felt
"funny" below the knee for about 30 seconds and my right arm was
"twitchy" for about 15 seconds. I noticed the following additional
"symptoms" during the next couple of days (see December
11, 2001 below):
once or twice it felt like I was going to be sick
to my stomach and vomit but within 15-30 seconds the sensation went away
several times the muscles in both
my right foot
or right arm felt like they were about to start twitching but no actual
seizure ever
materialized
December 2001
Tuesday, December 11, 2001
I had my first appointment with Dr.
Alkaitis, a neurologist. The purpose of this meeting was to discuss possible adjustments
to my medication in the hopes of eliminating the seizure activity. When I mentioned
some of the symptoms I noticed in the days following my last couple of seizures, Dr.
Alkaitis said these were likely micro-seizures, electrical activity in the brain that
didn't quite reach the level of a focal seizure.
At the time, my Dilantin dosage was
200 mg twice
a day and my most recent Dilantin level, checked on November 19, 2001, was 12.9. Dr.
Alkaitis instructed me to change my dosage to 250 mg in the morning and
200 mg in the
evening. After 5 days at the new dosage, I would get my Dilantin level checked again.
Dr. Alkaitis also requested I get an EEG and told me to only get 4
hours of sleep the night before the test.
Wednesday, December 12, 2001
I experienced another seizure combining the right arm and leg. This seizure was
preceded by a "funny feeling" throughout my entire body, almost like a
"wave of warmth" had passed through me from head to toe. I wondered what was going on as the
warm feeling slowly dissipated
then thought it might be signaling the start of another seizure. I noticed my right foot
started to feel a little funny so I got up and walked on it. Sure enough, my foot was
numb below the knee and I sat back down. After about a minute the sensations in
my foot
went away and within 15-30 seconds my right arm was "twitchy" for about 30
seconds.
Tuesday, December 18, 2001
I had my Dilantin level checked. The result was 13.3.
January 2002
Tuesday, January 1, 2002
I started the New Year with a mini-seizure. In the morning, I was sitting on the couch
resting the back of my head on my right hand. I noticed this position started to feel
funny to me and soon found myself having a seizure in my right hand. The seizure
involved some minor twitching of my fingers and lasted for only about 5 seconds. Around
30 minutes later, my right leg started to feel a little numb and I recognized it as a
signal of yet another seizure. The numbness and slight twitching in my right leg (mostly
centered around the ankle) lasted about 15 seconds.
Wednesday, January 2, 2002
At around 10:15pm, I noticed my right leg started feeling funny and realized I
was
about to have another seizure. My right foot experienced some throbbing sensations, some
numbness and minor twitching for about a minute. About 5-10 seconds after the seizure in
my foot stopped, my right hand was twitchy (basically random finger motions) for about
30 seconds.
Thursday, January 3, 2002
I spoke with Dr. Alkaitis and explained the seizure activity of the last couple of
days. Dr. Alkaitis suggested I adjust my Dilantin level again to 250 mg in the morning
and 250 mg in the evening. He reminded me that after 5 days at the new dosage,
I should
get my Dilantin level checked.
Saturday, January 5, 2002
At 7:00AM, after only getting 4 hours of sleep the night before (as
requested), I was given an EEG examine. Including the preparation time, when the tech hooks up all the electrodes to his head, the test
takes about an hour.
Wednesday, January 9, 2002
I called Dr. Alkaitis not only to get the results of my EEG examine but
also to report several new "symptoms" that have shown up since the
last Dilantin dosage change. When Dr. Alkaitis calls back, he informs me the results of
my EEG
examine on Saturday were normal. I asked, "Normal for a brain tumor
patient or normal like everybody else?" Dr. Alkaitis said, "Normal
like everybody else. There was no evidence of any seizure activity."
-
I report the following new
symptoms to Dr. Alkaitis: small rash, some occasional vision problems,
and some fleeting bouts of dizziness, vertigo and pain in my head. I also
inform Dr. Alkaitis I'd just gotten another Dilantin check that day. I explained
I thought the new symptoms were most likely due to the
dosage change and wondered if I should drop back. Dr. Alkaitis said he
felt I should keep the current dosage level where it was and see how
things progress during the next few days. He explained that sometimes it
takes the body time to adjust to a change in medication. I was willing
to trust his judgment and would stay at the same dosage level.
Thursday, January 10, 2002
I experienced another seizure, my third in 10 days. It's minor in
nature and when it starts I'm not even sure it's a seizure. I noticed my
right foot started to feel like it was asleep. Since I was sitting in
such a way that it was entirely possible for my foot to have fallen asleep, I repositioned
myself and shook my foot a little bit. The feeling lasted
about 15 seconds or so and then went away. I decided to wait before
declaring it a seizure to see if my right wrist would start acting up. About
a minute later, sure enough the fingers of my right hand started twitching
and I knew I was having another seizure. The hand twitching only lasted
about 30 seconds.
Friday, January 11, 2002
I learned the result of my latest Dilantin level check is 17.6.
Sunday, January 20, 2002
While folding the laundry in the evening, I started to feel really strange.
I suddenly felt very agitated and concerned as if I knew something was about to
happen. I thought about calling Debbie upstairs when the sensation seemed to
pass. A few moments later I noticed the familiar tingling of my right foot. I
lied down on the floor and waited. In thirty seconds my right foot stopped
feeling funny, then I continued waiting about another minute when the
familiar twitching started in my right hand lasting for about 30 seconds. If
anything was different about this particular seizure, I would say the
tremors I experienced during this seizure were perhaps a little more exaggerated than
during my previous seizures.
Thursday, January 31, 2002
While typing out an email in the morning, I noticed a funny feeling in my
right hand. I stopped typing and rested my arm on the desk. Within
seconds my fingers started lightly "tapping" the desk
involuntarily. This went on for around 15 seconds and then stopped.
February 2002
Friday, February 1, 2002
While typing out an email in the afternoon, I noticed a funny numb feeling in
my right foot. I stopped typing, stood up and took a few steps. Once I realized
I was indeed having a seizure, I lied down on the floor and put a
pillow behind my head. My foot made little twitching movements for a bit and
then I had the sensation the seizure traveled up to my right hand, which
proceeded to twitch in a similar manner to my previous seizures. The entire
episode lasted about 30 seconds.
Tuesday, February 5, 2002
I met with my neurologist, Dr. Alkaitis, for a periodic checkup and to
discuss a different medication to hopefully get my seizures under control. I was currently on a dosage of 250 mg of Dilantin twice a day. Dr. Alkaitis
prescribed a schedule to me for tapering off of the Dilantin while
simultaneously starting him on Depakote. Dr. Alkaitis informed me that due to
my occasional seizures I should *not* be driving. Once the seizures are
under control with medication and I have been seizure free for three months
(by Maryland law), I can get back behind the wheel of a car.
Monday, February 11, 2002
I began taking Depakote, 250 mg three times a day while maintaining my current Dilantin
dose of 250 mg twice a day. Later that evening, I had another seizure in my right hand. The seizure lasts around 15 seconds and
involves the twitching fingers I have experienced with my previous
seizures.
Tuesday, February 12, 2002
I drop my Dilantin dosage to 200 mg twice a day.
Friday, February 15, 2002
I talked with Dr. Alkaitis to inform him I have been taking Depakote
for several days now without any apparent ill side effects. Dr. Alkaitis instructs
me to increase my Depakote dosage to 500 mg twice a day tomorrow. He
reminds me to drop my Dilantin dosage by 100 mg every two weeks. Dr.
Alkaitis also requests I get a Depakote level check the following Wednesday.
Saturday, February 16, 2002
I begin taking Depakote at 500 mg twice day.
Wednesday, February 20, 2002
I have another seizure while at work. I suddenly found myself feeling
extremely agitated and recognized it as a possible aura preceding a seizure. I
was right. The seizure lasted around 30 seconds. It began with numbness in my right foot and ended with the twitching of the fingers in
my right hand.
While the seizure was occurring, I asked my friends to talk with me and
ask me questions. I was lucid and responding to them and their questions
without error. Later that day, I had my blood draw for a Depakote level
check.
Thursday, February 21, 2002
I learned my Depakote level is 33, which is on the low side of the nominal range
of 50-100. Dr.
Alkaitis instructs me to increase my dosage from 500 mg twice a day to 750 mg twice a
day and get another level check.
Monday, February 25, 2002
I dropped my Dilantin dosage to 200 mg in the morning and 100 mg in
the evening.
March 2002
Monday, March 4, 2002
I had my Depakote level checked. It was 54 (nominal range is 50 to 120).
Wednesday, March 6, 2002
I had another focal seizure this morning. (It was about 20 hours after
I'd exercised on the treadmill for an hour at 2 mph. There was only a single
dose of anti-seizure medication between the exercise and the seizure.) I woke
up shortly after 6am and decided to get up. I noticed my right leg seemed to
have fallen asleep but due to the position my body was in that didn't seem
strange. I briefly wondered if I'd be able to walk on it as I threw my legs
over the side of the bed and got up. I was walking just fine but when I got to
the hallway I found my right hand doing a "finger-tap-dance" against
my leg, which is my signature seizure: numbness in my right foot followed
seconds later by finger twitching in my right hand. The entire event barely
lasts 30 seconds.
Monday, March 11, 2002
I dropped my Dilantin dosage to 100 mg twice a day.
Monday, March 25, 2002
I dropped my Dilantin dosage to only 100 mg in the morning. While sitting
in a meeting at work, I had my signature seizure: numbness and some twitching
in my right foot followed seconds later by finger twitching in my right hand.
The entire event lasted about a minute.
April 2002
Tuesday, April 2, 2002
I spoke with Dr. Alkaitis about my recent seizure activity and he
suggested an increase in my Depakote dosage to 1000 mg twice a day. I was
reminded to get another level check in about a week.
Wednesday, April 3, 2002
I had two signature seizures this day, one in the morning and another in
the evening. My signature seizure is numbness in my right foot followed by
some finger twitching in my right hand, the entire episode lasting about (or
less than) a minute. I should mention I was very fatigued the entire day due
to having early morning puppy duty for the past several days.
Thursday, April 4, 2002
I had another signature seizure in the morning.
Monday, April 8, 2002
I stopped taking Dilantin.
Wednesday, April 17, 2002
I had my Depakote level checked and it was 75. The report I get from the
lab states the limit is 50 to 120 with the following note: Concentrations
exceeding 150 may be required and tolerated in some patients. However,
toxicity may occur at levels of 100-150.)
Tuesday, April 29, 2002
I had another signature seizure around 8PM just as we were leaving
Maggie's puppy class. She is only four months old and is probably a little too
young to start a formal class but we're trying anyway. This was her second
class and I'm the one training her. While in the class, her energy level is
unbounded and it takes huge amounts of energy on my part to control her and
remain patient at the same time. I imagine my seizure threshold level is a lot
lower after one of these classes and it was probably only a matter of time
before one would occur afterwards.
May 2002
Friday, May 17, 2002
I had three signature seizures this day, but the duration and intensity
were much less than what is typical for me. My anxiety level was a little
high, and therefore I'm guessing my seizure threshold level was low, as I was
due to get my next periodic MRI on Monday, May 20th.
Sunday, May 19, 2002
I had three more seizures this day. The first was a signature
seizure of less duration and intensity than usual. The other two occurred in
my right foot but did progress to my right hand.
Friday, May 31, 2002
I met with Dr. Alkaitis for a general checkup and to discuss my seizures.
He suggested another increase in Depakote from 1000 mg twice per day to 1250
mg twice per day.
June 2002
Sunday, June 2, 2002
I had another signature seizure in the evening.
Monday, June 3, 2002
I had blood work done in the morning to check my Depakote level and my
liver functions. My level was 144, which is creeping closer towards the upper
limit of 150. However, I don't appear to be showing any signs of toxicity. Later that evening, I had a reverse signature seizure
(started in the hand then went to the foot).
Wednesday, June 19, 2002
I had another signature seizure this morning.
Wednesday, June 26, 2002
I had about half a dozen signature seizures of one type or another (they
were either typical seizures involving both my arm and leg or some times just
my leg or just my arm; they also tended to be less intense at times)
throughout the day. Note that Debbie and I had arrived in CT at her sister's
house on Monday and I was very tired on Wednesday because I didn't sleep very
well the previous two nights. Also, Debbie's sister's house doesn't have
central air conditioning and the temperature was sweltering.
July 2002
Friday, July 12, 2002
I had another signature seizure early in the evening while on the
boardwalk in Wildwood, NJ. By now it was clear the Depakote wasn't working for
me and we decided to call the neurologist once we returned home from our
vacation to the shore with my family.
Tuesday, July 16, 2002
I spoke with Dr. Alkaitis about my recent seizure activity and that my
latest Depakote level is a little high. He suggested adding Topamax to my
regimen while lowering my Depakote dosage. For the next 5-6 days, I'm to take
25 mg of Topamax twice a day. He wants me to continue taking 1250 mg of
Depakote in the morning but to lower my evening dosage to 1000 mg. After the
six days have elapsed, I'm to switch to 50 mg of Topamax twice a day and then
call him to discuss a schedule for lowering my Depakote dosage.
Wednesday, July 24, 2002
I spoke with Dr. Alkaitis about the next set of dosage adjustments to my
anti-seizure medications. My Depakote dosage should be dropped to 1000mg twice
a day and my Topamax should be increased to 75mg twice a day.
Thursday, July 25, 2002
I had another small (intensity and duration) signature seizure early in the evening.
August 2002
Friday August 2, 2002
I spoke with a Dr. Blum, who was covering for Dr. Alkaitis while he was
out of the country until August 20th. He suggested I keep my Depakote at
1000mg twice a day, increase my Topamas to 100mg twice a day and remain at
those dosages until Dr. Alkaitis returns.
Monday, August 5, 2002
I had another signature seizure.
Monday, August 19, 2002
I had another signature seizure early in the evening while celebrating my
first "2nd birthday" on the one-year anniversary of my brain tumor
diagnosis.
Wednesday, August 28, 2002
I had another small (intensity and duration) signature seizure in the
afternoon.
September
2002
Wednesday, September 11, 2002
I met with Dr. Alkaitis, my neurologist, to discuss my seizures and for a
regular checkup. He did not recommend a change in medication at this time
opting to "let it ride" noting that my seizure activity has (in his
opinion) been decreasing in frequency over the past several months.
Sunday, September 22, 2002
I had another small (intensity and duration) signature seizure in the
afternoon.
Monday, September 23, 2002
I spoke with my neurologist and told him about yesterday's seizure. He
suggested another minor bump in my Depakote dosage to 1125mg twice a day. As
usual, after being at that dosage for a few days, I will get my blood level
checked.
Tuesday, September 24, 2002
I had another signature seizure in the
afternoon. This one was more intense and seemed to last a little bit longer
than the one on Sunday (almost as if the seizure on Sunday was a prelude to
today's).
Sunday, September 29, 2002
I started on my new Depakote dosage (1125mg twice a day).
October 2002
Saturday, October 5, 2002
I had blood work done to get my Depakote level checked. The level was 78.
Wednesday, October 9, 2002
I had another signature seizure in the morning.
Thursday, October 10, 2002
I spoke with Dr. Alkaitis and he finally decided the Depakote/Topamax
cocktail isn't working for me so he's decided to introduce Lamictal. He will
slowly introduce the new medication to my system and once it's clear I'm able
to handle it, he will consider taking me off one of the other two (most likely
Depakote it sounds like).
Wednesday, October 23, 2002
This morning I started taking 25mg of Lamictal every other day. I will do
this for two weeks. I also reduced my Depakote to 1000mg twice a day (no
medical reason behind this - I had just let my prescription lapse and Dr.
Alkaitis didn't see any reason to renew it). Later that evening, I had another
signature seizure. The seizure occurred only in my right hand and not in my
right foot as it normally does.
Wednesday, October 30, 2002
I had another mini-signature seizure--of very, very short duration--in the
morning.
November 2002
Saturday, November 8, 2002
I had another signature seizure in the evening. This one lasted about
60-90 seconds and was of low intensity.
Friday, November 15, 2002
I had one signature seizure during the day and then a reverse signature
seizure later in the evening.
Saturday, November 16, 2002
Seemingly out of nowhere, my eyes began to rapidly blink for about 5
seconds and then they just stopped. I can only assume this is another type of
seizure.
Wednesday, November 27, 2002
I had another mild signature seizure in the evening.
December 2002
Saturday, December 7, 2002
I had another signature seizure in the evening.
Monday, December 9, 2002
I met with Dr. Alkaitis, my neurologist,
Thursday, December 12, 2002
I had another signature seizure in the early afternoon. This one involved mostly the right foot as there was minimal right hand activity.
February 2003
Tuesday, February 4, 2003
I haven't updated this page in some time and I'm probably not going
to have much time do so in the future. I started working one day a week back
in August and increased it to three days a week in November. Needless to say,
I'm once again a fairly busy camper. I created a Seizure
History page that takes less time to update.. You
should consider this a dead page and refer to that page in the future.
Finally, though I mention being a fairly busy camper, please don't
hesitate to contact me by email using the link below. I am NEVER to busy to
respond to email generated by this site (unless it's spam).
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