Posted by Johnna
on September 10, 2000 at 00:35:08:
In Reply to: Re: Pseudoseizures and seizure type. posted by Mike Remy on August 21, 2000 at 01:03:35:
: : My nine year old daughter is having about 6 to 7
: episodes a day. We, parents and doctors, can't
: figure out what is causing them. About six months
: ago she started saying she "felt like someone else." That progressed to these episodes where
: she has very little warning and then she feels she
: has to bury the front of her head into her hands,
: her mom and dads belly and someone else nearby.
: The attack last only about 20 to 30 seconds but at
: times they can be very intense and dangerous if
: she's outside and falls to the ground. She has many of these episodes at night. Her EEG and MRI
: were routine. She does have ADD. We currently just started her on Depikote...no signs yet...
: Anyone's help would be greatly apprieciated.
: I'm so relieved to hear your story because I just got back from the hospital which I went to because I have had 4 episodes that I am fairly convinced are seizures because of the symptomology (which is very similar to yours). Thanks. My e-mail is firstname.lastname@example.org
To all who have been diagnosed with PSEUDOSEIZURES,
I only found this site last night.Did a lot of reading! I can identify with many of your stories.
I am responding under pseudoseizures. This is my story. My seizures started at age 27 while
in the third trimester of my pregnancy. They started with a sense of de ja vu and a fuzy
sensation in my head. Maybe 30 seconds. I was not aware these were simple partial seizures.
Until! 4 weeks after my daughter was born I suffered a severe Tonic Clonic (grand mal) seizure
in my mothers livingroom. 2 nurses present, one being my mother. Spent a couple days in the
hospital.Thank the Lord this is the only convulsive seizure I've had. God Bless those of you who
have been thru them multiple times! Anyway EEG, catscan both normal. Was sent to a neuro-
logist. Another eeg, normal. Was
started on Dilantin.(this is for those of you who had questions on Dilantin and rashes) I took
this for a few days and obtained this rash.I was told to stop taking it due to the fact I was
allergic to it.So my assumption to those of you who have had these rashes is that your allergic
to it. So stop taking it! After Dilantin was Tegretol. Side effects were extreme! I was withdrawn
from this. Went for a couple of months with no medication. Had many simple partial seizures.
Neurologist # 2. EEG, again normal. Started back on Tegretol. Was worked up to 900mgs a
day.Could not function because of side effects! Twitching, shaking and couldn't even sit down
without going to sleep! Not to mention it didn't control the seizures. Neurologist # 3. Specialist
in Epilepsy.EEG normal. 24 hour EEG normal. MRI normal. Started on Felbatol, new drug at
the time. Side effects were unbarable. I can't even describe them, I was so out of it. THEN!
THE RASH! Was withdrawn quickly due to, again,an allergic reaction.Was then started on
Depakote. This was a nightmare for me. My seizures continued, becoming complex partial
seizures by this time. Had multiple side affects.Didn't want to eat and when I did I wanted to
throw up! I'm 5' 7" and weighed 98 lbs at this time.I can't even remember all the side effects
and don't want to. It even changed my personality! (I put my poor husband thru hell.) I also
obtained a slight rash on my stomach. The DOCTOR (I use this term loosley) Told me it was
probably from my underware! I was kept on the drug and Tegretol was added to it! Increasing
the side effects. I had to quit work. Because of the nature of the seizures it was suspected
they were coming from the temporal lobe. Meaning I might be a surgical candidate. SO!
The tests began. 10 day stay in the hospital for intensive EEG monitoring. Which consists of,
being hooked up ( I'm sure most of you know what that means) laying in bed or being strapped
into a chair.In front of a camera. With no meds to induce seizures. You have to ask to go to
the bathroom, with
supervision of course.I had a seizure the first night I was there. The next morning she ( THE
DOCTOR) comes in all smiles and says she knows right where the seizures are coming
from.Finally! It was documented that I was having true seizures. I sat there for 9 more days
with 1 other being documented. The diagnosis? Right temporal. The last night,as I recall,
was quite busy. I remember having a couple seizures and was very uncomfortable with uncon-
trolable leg twitches. The nurses were in and out as if these were seizures.I didn't know what
to think.The next morning back she comes. She says "Those were not seizures you had it
was anxiety." Her way of saying Pseudoseizure or false seizure. After doing some reading
and speaking to someone in the field I learned that the leg twitching was a withdrawal symptom
from stopping all meds! I was astonished that the hospital staff didn't know this! Let alone the
expert DOCTOR! Test #2. WADA test. Some of you may be familiar with this procedure. It
consists of putting a cathader in the main artery of the groin.Snaking it up thru the neck artery
where they inject medication to put that half of the brain to sleep. They proceed to ask questions.
Or show you objects to remember. Then they do the same to the other side. It is to determine
what side your speech is on and your memory functions. Test #3 neurosycological testing. An
all day testing. consisting of Inteligence testing, speech, visual skills, eye hand coordination,
organizational skills, and much more. This is done again after surgerey and compared to the pre
surgical testing. With all this imformation gathered it was decided I was a prime candidate for
surgerey! It was all so overwhelming. Although there is no guarentee of total success she gave
me a 90% chance of being seizure free. It sounded wonderful to me. It blinded me to the fact
that I should have gotten a second opinion. Surgery date set. Aug. 3 1994. 2 days after the
surgery I had a mild seizure. The nurse who came in said " what makes you think that?" I
said " I know what they feel like." She never told THE DOCTOR! I remained in the
hospital aprox a week. It took several months to recuperate. Had bad headaches for 2 years.
4 weeks after surgery my husband was being sent back to the ship he was stationed on with
the navy. Seizures then started again, but mild. And I was home alone with a 2 year old and
of course couldn't drive. My Depakote and Tegretol were increased and a 24 hour eeg was done.
THE DOCTOR said nothing was showing. I spoke to her assistant prior to this and was told
it didn't look good. As time went on THE DOCTOR got quite defensive and distant. Kept telling
me to go get counciling. I did , but nothing changed. I was actually hoping she was right about
them being Pseudoseizures. I told her so and said " if they aren't real why can't I come off the
drugs? THE DOCTOR said what a good idea! Her chance to get rid of me. I had learned that
you can't tell the difference between a real seizure and a false one. Its aparently an assumption.
It took 5 months to come off the drugs. Seizures? getting worse. 5 days after coming off totaly
I went into a constent seizure state. I was admitted to the hospital.My family doctor suggested
I go see Neurologist #2 after speaking to THE DOCTOR. Went back to #2 and was put back on
Tegretol. Used to it now. Another EEG, had some small indications. Whatever that means.
Had one more scheduled visit with THE DOCTOR. She was wild I went back to #2. She said,
"I can't help you, go see a phyciatrist!" That was that. I thanked her for her time and left never to
return. #2 sends me to #4. Mary Hitchcock Medical Hospital at Dartmouth. Quite a travel
considering I'm in Maine! 10 more days looking at 4 walls going thru intensive monotoring again.
7 days, nothing. The last 3 I had 13 siezures! Real! Coming from the left side! Sound fishy?
I am still seeing him. Have been Seizure
free for over 8 months! Knock on wood! On a combination of Tegretol and Lamictal. Slowly re-
ducing Tegretol. I can now drive. The meaning of my story? Get a good doctor, a second
opinion and think it over. Remember, every one is differnt. I hope this helps someone. Its not
meant to depress anyone. I'm sure you all have your own stories. I have read some. I would like
to hear more. I guess I've gone on long enough. Hope you weren't too bored.So if there is
anyone out there debating on surgerey, good luck and god bless to you all.