So I did lots of research and comprised a list of questions for my Dr.’s appointment tomorrow. Since last weeks seizure brigade, I really feel I can’t go on dealing with this seizure disorder. I want to make sure all avenues have been crossed before I accept the fact that I may have to live with a seizure disorder for the rest of my life.
I plan on going into the doctor’s office tomorrow with these questions and force him to take the right steps to determine what in fact is causing these seizures and if and what they can be stopped.
Here are my questions for dialogue:
How are seizures different from strokes?
Since we keep upping the meds and I’m still getting seizures, Is there something else that can be done?
When I have a seizure and black out, does my body go out of control wild kicking and banging?
When I had the large seizure on Monday and blacked out, I had a headache for several days following? Could this be due to the brain activity? Brain hasn’t stabilized?
Should I be looking for work or are these seizures serious enough to get me approved for disability?
Also with the seizures, causing me not being able to drive, difficultly finding employment as well as being 35 years old and moving back into with my parents (which seems to be more for their consciousness than for my well begin.) I’ve already been hospitalized for one suicide attempt. I do still have suicidal ideation, however knowing the flipside of a failed suicide attempt makes me leery of attempting it again. Although when I go a long period of time without a seizure and come within grasp of getting my licence back. Then the seizure occurs and resets the time table, I get extremely depressed and might make another attempt. I do see a psychologist weekly to help me work through the anger, frustration and disappointment.
Can we run tests to get a definitive answer to what causes these seizures? Because they don’t always come about due to stress.
Does weather (temperature) affect seizures?
These are not Grand Maul Seizures?
Is Keppra the right medication to control the seizures?
Am I taken them at the right therapeutic level?
I’m taking 1500 mg twice a day (total 300 mgs)? Should I divide the 3000 mgs so I’m taking the meds 3 times a day? Is the Keppra being absorbed correctly?
When I go for long periods of time seizure free, (roughly 2 months, give or take), when a seizure reemerges the intensity of it seems greater.
As was the case last week when I had a large one on Monday evening (10/27) I felt it come on fairly quickly, my mind wandered, my vision was distorted and the right side of the body began to shake. I proceeded to fall off the bed, not recalling the fall. I woke up to find my parents standing over me calling my name. I said I was ok, however I did not regain full feeling in my right arm. It felt like a dead weight. I also proceed to have a head ache for the next week off and on.
When I had the 2 seizures during the night on 10/29. The first one was a bit intense but not as intense as Monday’s and the second was even less so. Then the 2 I had on Thursday 10/30/2008 they were even less intense than Wednesday’s.
Should I be getting blood work to check the levels during the seizures?
The seizures and meds don’t interfere with the HIV or the treatments?
I don’t think the medication (Keppra) is doing it’s job. While my seizures are few and far between, they are still present. Also, when they do happen they seem to be more intense. Of course it doesn’t help that Netty and Jack have finally seen me have a seizure, so I get asked constantly if I’m ok or “how am I doing?”
Plus, Netty thinking she’s some sort of MD is giving her own prognosis. “ Shit Annette, stress is a factor! So maybe you can stop pissing and moaning about having me living with you and doing extra laundry. I told you I’d do my own chores. But alas you poo-poo’ed that idea.” Plus she thinks I'm going to start taking fish oil pills to better my diet. Um NOT!
Of course it doesn’t help that when I do actually ask for assistance I get a negative reaction. Jack doesn’t know what to contribute to my list of questions. Also Netty won’t go to the doctor’s with us tomorrow. I might warn her tonight though, when she get home tomorrow she better not bombard me with all these questions. Especially since she was given the opportunity to join us. Also I don’t have 100% confidence with the fact that I’m going to get answers. I’m preparing myself for the doctor visit to only elicit more questions. So word to the wise, I might be a bit agitated and stressed out tomorrow night. So get out the thick shoes because I will be surrounded by egg shells for the majority of the weekend.
