Epilepsy seizures in the form of hallucinations?

Hi, I am 30 now, and my seizures started around 5-6 yrs back. I had no history of any such seizures in the past. I was under a lot of tension and stress at that time. The first 3 seizures were severe, and all happened during sleep. I didn't know what was happening, but it seems my whole body stiffened, and i was making a shrieking voice. The first 2 seizures took almost an hour to come out of it. I was completely unconscious, even while i was dragged to the hospital. I was put in Valprid CR- 400 mg, 200mg twice a day, and the seizures stopped. As my epilepsy started at a very high age, i was told that most likely 3 yrs of continuous meds will completely finish the illness.
However, a single day miss of the medicine, gave me a third seizure, which made me aware that missing the meds all together will anyways cause a seizure, and that the dosage has to be slowly reduced before completely finishing the dosage.
After 2 yrs of taking Valprid, my doctor switched me to Lamosyn...again 400 mg, due to Valprid's side effects such as weight gain. Lamosyn was also equally good. At the end of 3 yrs i.e. in 2008, i slowly brought the dosage down to 200mg (of course with my doctor's advice). It was all going fine...till mid 2009. From 2009, i don't get seizures, but my epilepsy's symptoms have completely changed, now the seizures are in form of a kind of hallucination. I am sitting in my office..in vroad daylight, but in front of my eyes...i am in some other place...in evening time,...with some different family/ doing something completely different (it keeps changing)..if its a family also...i am so much there that i feel i have always been a part of it...or the other work i am doing in my second world is what i have been doing all my life. Stuck between 2 worlds...puts a lot of strain on my mind, and sends a kind of shiver through my body (completely invisible to others) straining my body completely too. I immediately try to come back to my senses, looking left/right. Sometimes...within a min i am back to my sense, with a strained body and mind. Sometimes, my transition to both the worlds keep going on for 15-20 mins too. I have to take Lamosyn immediately. But at the end of episode...i am completely drained of all the strength...and also have a strained mind. The heaviness in my head takes quite sometime to go.
The episodes have increased in the recent past...and i have to take Lamosyn first thing in the morning to avoid the seizure early morning. And sometimes..(esp end of my menstrual cycle)...I have to take sometimes even 200 mg thrice a day too as they keep on recurring.
I don't know what to do..and how to control it. My doctor is in Apollo Delhi, and after marriage i have shifted to Bangalore...so will be going to a neurologist very soon.
Any suggestions..pls help. Y'day itself i took 200 mg in the morning, with an attack around 4 pm...another 100 mg which didn't control much..another 100mg. It stopped, at night also had my regular dosage of 100mg. A total of 500mg during day, still it recurred around 2 am (though a mild one), another 100mg.Don't knw what to do..

[Narble]

What you're describing sounds like temporal lobe epilepsy, in which seizures can include hallucinations and other bizarre mental experiences. But TLE, sometimes referred to as a complex partial seizure disorder localized in the (right) temporal lobe, can be well controlled with the right combo of meds.

I suspect the neurologist you're planning to see will get this all sorted out. Some people with seizures need more than one med to gain good seizure control. Sometimes, a, med that works for a few years simply stops working well. So a good working relationship with your doctor will be very helpful. Seizure disorders can fade with time, but often they don't. A thorough neurological workup, likely including brain imaging, may help find any underlying issues involved, which in turn will help with treatment.

Good luck with the neurologist appt.

[Narble]

What you're describing sounds like temporal lobe epilepsy, in which seizures can include hallucinations and other bizarre mental experiences. But TLE, sometimes referred to as a complex partial seizure disorder localized in the (right) temporal lobe, can be well controlled with the right combo of meds.

I suspect the neurologist you're planning to see will get this all sorted out. Some people with seizures need more than one med to gain good seizure control. Sometimes, a, med that works for a few years simply stops working well. So a good working relationship with your doctor will be very helpful. Seizure disorders can fade with time, but often they don't. A thorough neurological workup, likely including brain imaging, may help find any underlying issues involved, which in turn will help with treatment.

Good luck with the neurologist appt.

[an1979]

Thanks....this will help...will be able to converse better/ with more clarity with the doc. Will keep updated.... And do pray that my condition improves... :( We are also planning for a baby...though i have been told the medicines doesn't effect the baby...but scared...that the seizures may effect the pregnancy per se??!!

[StrangeBrain]

I concur with what Narble said.  My temporal lobe seizures also took the form of a semi-hallucinogenic state and that is why they went undiagnosed for so long.  Please do not laugh at me, but at the time I was involved in a Charismatic/Pentecostal religious group and I thought I was undergoing some sort of demonic possession!  I was quite literally terrified out of my wits and had no one to talk to as I was sure the group would turn on me.  It took a trip to the emergency ward to find out that I was experiencing what was at the time (late 1970's-early 1980's) considered a rare form of epilepsy.

Since then I have learned as far as the medical community is concerned, temporal lobe epilepsy is not the rare phenomenon that it once was considered to be; however, this has not filtered down to the general public who for the most part is not aware that seizures don't have to involve loss of consciousness or awareness to be seizures.

I don't think you really have to worry about the seizures themselves affecting your baby as he or she is pretty well cushioned inside of you.  I would be more concerned about the effects any medications you are taking,  I work in preclinical research and that is one of the things we study.  I would talk to my doctor about what you are taking and also go on line and research these things.  I can't give you more specific advice because I don't know what you are taking and how much and also I'm not a doctor.  But you are wise to be concerned about these things.

[an1979]

Thank you so much for your concern....really appreciate it. I only take Lamosyn 300mg everyday. Please do let me know...if there is anything i can do to improve my condition and also to save my baby (i.e. once i conceive) of the effects of medicine. Will look forward to your reply..thanks again.

[an1979]

Hi..both of you...went to doctor today...he says...if it is not affecting u too much..continue with the same meds :(( He is saying there is nothing serious. And there is nothing like the body getting used to the medicine i take.

By the way...today morning only i came to know that i am pregnant....:)) so he says  lets wait for a month or 2...if a dilution happens because of harmonal changes (which he says is quite a possibility) he will increase the dosage.

He reallly scared me too...that babies of mothers who are on such medicines are twice more susceptible of having congenital problems :'((((  This part was VERYYYY scary.

Any suggestions...pls let me know....worried :((