E and Antiepileptic and Anticonvulsive drugs

• By jerseagal
• Posted August 25, 2009 at 8:14 am
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I am not aware if while in the neuro ICU unit I was given any anti-convulsive drugs. I refused them in rehab because it didn't make sense to me to take meds for a symptom I did not have. No seizures or convulsions. Upon discharge they told me I might have seizures. I said "if I do we will handle it then I am not borrowing trouble".

At HUP in Philly Doc ordered pysch drugs. I refused, despite urgent pleading from my family to take them. I was not depressed, I showed symptoms of mania, Trouble processing info. I came to strange conclusions. I was certain that one of my roommates was Rosa Parks incognito. I thought Maya Angelo would come and do a poetry reading if I asked.

I had few other strange ideas humorous to my family that I can’t remember but nothing that caused me to a danger to myself or others. I was alert and oriented to time and place, I was aware of what happened and what I needed to relearn, I did not have delusions of grandeur, I was sleep deprived because of the noisy chart-scheduled hospital environment, I was given trazodone 50mg at bedtime. They told me it was a sleeping pill. If I was sleeping when they came to give it to me I refused because I was sleeping without it. I came home with a Rx for it but never took it.

I understood that I wasn’t always thinking clearly. At my request, my family used an agreed upon stop sign to alert me when I was “off track”.. I had a weekend before they moved me from rehab to the pysch ward where I would not have the right to refuse meds. Our signal worked for me. Monday morning came I showed the psychiatrist the system we devised. He gave me a few other tests and rehab went on.

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• By jerseagal
• Posted August 26, 2009 at 12:04 pm
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Dignity,
Excellent post but as BobTX pointed out to me some are not willing to share info with the public. I have reposted my poll requests using the members only button.

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• By DVirginia
• Posted August 26, 2009 at 4:40 pm
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My son takes Trileptal, 11ml, 2x per day (it's in liquid form because of his age - 8 yrs old) for partial complex seizures. He's been on it for two years (since he was released from the hospital). Docs have told us that the effects include drowsiness and slowness (his reaction times to things is slow). The neuropsych doctor told us it could be contributing to his trouble with fine motor skills and attention, too. Although, it's unclear how much of that would be happening as a result of E, too.

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• By whyisjane
• Posted August 28, 2009 at 12:55 am
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I had HSE in 1978. Not much was known then so when I "woke up" after being in a coma for 10 days it was a "surprise" to the neurologist (the other 9-10 people who had the same illness as I did in Northern New Jersey in Oct.1978 all died), therefore during my recovery I had 5-30 seizures a week. It took almost 18 months just to control them (it turned out that I was allergic to dilantin, tegretol and a few other of the "so-called standard" medications for seizure control). I ended up being given large doses of clonazeam with phenobarbitol as the only combination of meds that stopped me from having continual "grand-mal seizures" (during this time my seizures were so "violent" that my neurologist instructed my family to watch me 24hrs a day --- even so I still managed to break my nose at least 6 times, had more concusions than I could count, plus several skull fractures ----- even my heart stopped enough times that my friends back in NYC at the time started to "joke" with me that I was like a "Timex Watch: She takes a licking, but still keeps ticking). For me it was like being in a "waking nightmare" plus I had lost 7-8yrs of memory (I got sick when I was 26, so I lost most of my 20's) and the meds kept me so sedated that I walked around looking like I was "stoned" all the time and I felt like I was looking at everything "through a fog".
Because the drs. in 1978 did not have much experience "dealing" with this type of encephalitis, erroneously I was told that I would not likely live much past 30yrs of age (I'm 57 --- HA!!! --- NOT DEAD YET!!), therefore I had NO REHAB and the drs. main concern was "dealing with my seizures" and that's the way it stayed for the NEXT 20 YEARS!!!!. I only regained my "sense of self" by "donating myself" to various universities and hospitals as a "research subject" to "get any rehab".
The "minimal rehab" helped me "learn to function" and "regain my sense of self" ( for at least the first 5yrs, half the time I didn't really know who I was ---- even if I walked a few blocks away from my house, I would get lost wandering around all night sometimes----- too long a story to explain why I wasn't watched or why my family was "in denial").
Basically, most of the seizure control medication made me sedated (unfortunately, this is the case with most seizure medications and I discovered that it happens to LOTS of seizure patients).
Luckily through a strange "twist of fate", about every 6-8yrs after my "recovery", my seizure medicine would "stop working" and they would have to "adjust what I started to refer to as my medicine coctail". In 1998, while I was living here in Colorado, my medicine had to be "changed" again ----- This time, there were only 3 drugs left on the neurologists "list" of drugs that I had not taken (that I was not allergic to ---- or had not tried). The dr. gave me a choice (I don't remember the names of the two I rejected but I do remember that I rejected trying them because 5% of the patients that had tried them had died, and I considered that an UNDESIRABLE side-effect) and I chose FELBATOL. At that time it was still a drug fairly uncommon (meaning rare and expensive - but I was still working then with health insurance that covered it). Even so I still had to continue to take a small dosage of clonazepam plus phenobarbitol (I found out much to my dismay that once a patient takes these for more that 10yrs -- well your "stuck" with them --- every time they tried to "taper me off them" I would have MANY BAD SEIZURES -- with concusions or other injuries).
So FINALLY !!!!! in 1998-1999 , "the fog cleared" and I actually was able to "see clearly".
As with all seizure meds --- even if things work, there's always a "price to pay" ---- meaning "side-effects" --------------- and with FELBATOL --- I had to deal with sleep disruption, radical mood swings, lower intestiinal problems, and some other "discomforts" ------BUT ----- when the choice is having seizures (with death always "hanging over my head" as a posibility) or not having seizure ----------- the choice is TAKE THE MEDICINE .

Sorry for the LONG STORY but I felt I needed to make the point that although seizure medications are "a bummer", the alternative is FAR, FAR WORSE!

The major focus for ANY seizure patient is to BE AWARE and find out as much as you can about what is available to you (there's even a "device" called VNS stimulator --- kind of like a "pacemaker for seizure patients" ---actually it stimulates the Vagus nerve --- supposed to diminish the need for ANY meds or minimal meds -- but BE CAREFUL!! not everyone can use this -- for example I can not because I have bad respiratory allergies and sleep apnea -- but for others it's been proven effective ---CHECK IT OUT !) .

You are your best "advocate" --- Become an EDUCATED PATIENT. Doctor's can MAKE MISTAKES!!!
They're only human (even if they "think they're superior").

Good Luck
Peace & Love, Jane
jlabie@att.net

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• By jerseagal
• Posted August 28, 2009 at 7:38 am
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Jane all I can say is WOW!!!!

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• By Dignity
• Posted August 28, 2009 at 7:52 am
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Jane,

Thank you so much for sharing all this information with us, it is so very, very important for us, as you very rightly stated in your message, to become educated and informed patients, which is the reason why I have launched to subject on this forum.

As you mentioned, antiepileptics and other drugs can effect your behaviour, can effect your mood, can effect your tiredness, or even stop you from getting enough sleep, and it is essential for people taking these drugs, as well as their caregivers to be informed about this, because if they are not properly informed they could attribute these changes to brain dammage, which is not always the main cause of every trouble.

Please do not hesitate to share your experiences, and to inform yourselves, because many people suffering from E may be left in the dark, and may suffer more than they need to.

Dignity

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