Let me give a background of my neurological history. I have a concern recently and I need to know if it is a valid concern.

1965 - Premature birth of me....2 1/2 lbs

1966 - diagnosis of Epilepsy due to scar tissue in the left temporal lobe possibly the result of a period I went without oxygen as a baby.

1978 - Seizures diagnosed as Psychomotor or partial complex. Treated with Mysoline

1978 - Brain Surgery on the left temporal lobe to remove scar tissue (90%). Procedure involved 6 hours of mapping the brain functions, then actual removal of tissue. Seizure free until 1984.

1984 - Seizures returned as Grand Mal or Tonic - Clonic seizures...patterns were violent.

Seizure free from 1986 until 1990. After 1990 birth of first son, auras return infrequently.

1993 - After birth of second son, seizures return at a frequency of one or two a year. Then, in 1998, seizures were regularly occuring around menstrual cycles occuring two days before and/or two days after cycles. Called Catamenial Seizures.

Treated in 2002 to prevent cycles and have been seizure free since then but symptoms or auras occasionally come.

Now...the main concern....recently (over the past 8 months) I occasionally get this "phantom sensation" that I am being cut, or burned, or hit (like a hammer). Could this be a form of seizure activity that is developing from my history? It seems that my seizure patterns adapt everytime I seem to find a control treatment. Could these phantom sensations be the result of the brain surgery I had? Thesee phantom sensations are spooking me. I have never been diagnosed with any psychological disorders. I am afraid to ask if this sensation is possibly related to something other than the seizurees?

[lenjan]

I don't think any of us here are neurologists -- you should probably ask this of yours. But, I can tell you my experience, anyway.

I was dx'd at 1 year old as well, though I have no idea of my complete history like you do, because Mom never coughed it up. I was put on phenobarb, which, much later, they recognized was a bad idea for anyone under 18, but not till it was too late for me, oops. I was on Dilantin for a bit as well, and ended up in the hospital for a week when I was 7 because of it, and that was the end of that.

I haven't had a seizure since the early 1970s sometime (I'm going on 43), but I had twice-yearly and always-abnormal EEGs till I was 18, at which time, poof! everything just kind of magically went away. I haven't been on seizure meds for actual seizures (bipolar yes, but not seizures) since 1983, nor have I had a seizure in all this time.

HOWEVER, periodically I do get weird sensations like you describe, and sometimes (very, very, very rarely) I space out for a second. In both cases, the sensation is kind of a tingly weird feeling and then I have to vigorously shake my head and all of a sudden I'm "back" to wherever and whatever I was doing at the time.

I have been told by a physician that this probably is "residue" from the grand mal seizures and I am very lucky that it's all I still get.

I don't know if that helps you any or not, but I hope a little bit, anyway.

Candy

Thanks, CandyBear. It does help alot actually. My general physician has not yet assigned me a neurologist because my seizures have been under such good control since 2002. They tend to leave things be so as not to cost the province too much in health care expenses. I will really have to push this on my doctor to get a neurologist and even if my GP refers me, the Neurologist's office may set me in the non-emergency" pile which means long wait periods. Oh Well, such is the consequence of publically funded health care....long waiting times.

[Perna]

Yes, Ingridave, check here:

http://www.emedicine.com/NEURO/topic342.htm

under "sensory simple partial seizures" (1/4-1/3 of the way down the page) and your phantom sensations is the second one :-)

Perna: Thank you Thank you Thank you!!!

I will print it off and discuss it with my family doc. I should ask how the last EEG test came out.

[BalishBun]

You have quite a timeline there! I know nothing about seizures except that my sisters fiance has them if he doesnt take his meds, but I really hope that in your case, they get better and same as well with those "phantom sensations".

Thanks Balishbun. At least these phantom sensations can be traced to seizure activity and not something else. Fortunately, I haven't had more aggressive seizures since 2002. That is a positive!