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I called this morning to ask about the benadryl. Since in March 2011, when I took the sudafed, they told me not to take it, since I was off of one anti seizure medication and only on one, the chances of it causing seizures, increased. But if I wanted, I could use Benadryl. I was suprised they would say that, and I wanted to ask again if I heard them correctly.
So I recieved a call at around 10:30am this morning. Again, it was the neuro's nurse. She said she got my message, and verifyed that it was OK to take the benadryl.
onder: Ok, Im thinking to myself other than that, what could have caused the seizures to come about on Jan 21st and last?
She said according to my neuro, he firmly believes that the seizures that have occured since the 21st of january, are NON EPILEPTIC seizures. Why I ask? I went to see a psych dr, who confirmed that the seizures he assums are NON EPILEPTIC seizures, are indeed Epileptic Seizures! This psych dr also added that if they were non epileptic seizures, they would be controlled with proper medications and therapy, not an anti seizure medication used to only control EPILEPTIC seizures! Where as in my case, once I was put back on the Keppra XR, the seizures stopped. Confirming that the seizures that he saw on the video that did not register on the EEG, are in fact epileptic seizures, and the possibility that them not showing up, could be the fact that they are too deep to be picked up by the electrodes on the outside of the head. Where as if further testing was done, tests that take place where they go inside your brain and place the electrodes inside, those type of tests could pin point the seizures and pick them up. But as of now, and since March 2011, there was absolutely NO talk about any further testing being done to do that.
Further more... this nurse told me that by telling me to take an extra keppra xr tablet, was the drs way of showing me that by taking that extra tablet, and the seizures still occuring, or the auras for that sake, that it was indeed NON Epileptic seizures. My response to her was... "How do you expect to tell a patient to take an 1 extra pill and have the seizures or auras go away, and return to their normal dose the next day, and have nothing happen? When I did take the extra keppra xr tablet, I took it around 3pm on tuesday and wednesday. Both of those days I had no auras for the rest of the day. I then took my evening dose at 8pm. So it did help.
If they were wanting to see if the seizures would stop, then they have to increase the dose not just by adding one extra pill, but my increasing the dose for a matter of time, to see if they would stop. Allowing one extra tablet just one time isnt going to do a damn thing!
Then... more stuff came up!
She said that afterwords affects I was experiencing since these first started on Jan 21st, was NOT Epileptic seizure related.
So, the being tired, really bad headache, pounding throbbing headache, confusion and lack of energy was NOT associated with the symptoms after a person experiences an EPILEPTIC seizure?onder::roflmao:
I asked her, What are the main symptoms that one experiences after a real epilpetic seizure?
Her response... "Well, not what you are having".
RIGHT. OK Chick.
She asked if I had migraines? Well, Ive never had a history of them, but I have had headaches, but those were taken care of once I was put on the Keppra XR. She asked what about the headaches youre having now?
Well, what should I expect I should be feeling after going 11 days now, with either having seizures or auras non stop? Should I be feeling like the energizer bunny? She was trying to point out that the headaches Ive had sine having these seizures and auras, are not normal and I should see a migraine specialist. :roflmao:
I pointed out that if the symptoms that I am having... headaches, tired, no energy, etc are not normal symptoms of after having a epileptic seizure, and my dr is not taking the time to correct this problem, what the hell am I suppose to be feeling? According to the research ive done and was told by the pysch dr, after non epileptic seizures, you feel different compared to having a real epileptic seizure. You "bounce" back quicker. You dont have the headaches and so forth that a epilpetic seizure causes afterwords. But then she goes on to say that what Im experiencing is not at all what a epileptic seizure causes after having a real epileptic seizure! :roflmao:
She said it sounds like its best to move forward and get a second opinion.
I told her, yes, we are looking and have been looking around. Its hard for us, because in our area, there are just local neuros who have available medications, but the testing such as the EEG, MRI, MEG Test, those are not here. We have to go a bigger town, such as OMaha, who has the testing available, but the doctors there are freaking clueless. It sucks that they have the tools available but the knowledge the drs need, are clearly not there.
Lets just say I had a good "vent" with her today!op: 
So I recieved a call at around 10:30am this morning. Again, it was the neuro's nurse. She said she got my message, and verifyed that it was OK to take the benadryl.
onder: Ok, Im thinking to myself other than that, what could have caused the seizures to come about on Jan 21st and last? She said according to my neuro, he firmly believes that the seizures that have occured since the 21st of january, are NON EPILEPTIC seizures. Why I ask? I went to see a psych dr, who confirmed that the seizures he assums are NON EPILEPTIC seizures, are indeed Epileptic Seizures! This psych dr also added that if they were non epileptic seizures, they would be controlled with proper medications and therapy, not an anti seizure medication used to only control EPILEPTIC seizures! Where as in my case, once I was put back on the Keppra XR, the seizures stopped. Confirming that the seizures that he saw on the video that did not register on the EEG, are in fact epileptic seizures, and the possibility that them not showing up, could be the fact that they are too deep to be picked up by the electrodes on the outside of the head. Where as if further testing was done, tests that take place where they go inside your brain and place the electrodes inside, those type of tests could pin point the seizures and pick them up. But as of now, and since March 2011, there was absolutely NO talk about any further testing being done to do that.
Further more... this nurse told me that by telling me to take an extra keppra xr tablet, was the drs way of showing me that by taking that extra tablet, and the seizures still occuring, or the auras for that sake, that it was indeed NON Epileptic seizures. My response to her was... "How do you expect to tell a patient to take an 1 extra pill and have the seizures or auras go away, and return to their normal dose the next day, and have nothing happen? When I did take the extra keppra xr tablet, I took it around 3pm on tuesday and wednesday. Both of those days I had no auras for the rest of the day. I then took my evening dose at 8pm. So it did help.
If they were wanting to see if the seizures would stop, then they have to increase the dose not just by adding one extra pill, but my increasing the dose for a matter of time, to see if they would stop. Allowing one extra tablet just one time isnt going to do a damn thing!
Then... more stuff came up!
She said that afterwords affects I was experiencing since these first started on Jan 21st, was NOT Epileptic seizure related.
So, the being tired, really bad headache, pounding throbbing headache, confusion and lack of energy was NOT associated with the symptoms after a person experiences an EPILEPTIC seizure?
onder::roflmao:I asked her, What are the main symptoms that one experiences after a real epilpetic seizure?
Her response... "Well, not what you are having".
RIGHT. OK Chick.
She asked if I had migraines? Well, Ive never had a history of them, but I have had headaches, but those were taken care of once I was put on the Keppra XR. She asked what about the headaches youre having now?
Well, what should I expect I should be feeling after going 11 days now, with either having seizures or auras non stop? Should I be feeling like the energizer bunny? She was trying to point out that the headaches Ive had sine having these seizures and auras, are not normal and I should see a migraine specialist. :roflmao:
I pointed out that if the symptoms that I am having... headaches, tired, no energy, etc are not normal symptoms of after having a epileptic seizure, and my dr is not taking the time to correct this problem, what the hell am I suppose to be feeling? According to the research ive done and was told by the pysch dr, after non epileptic seizures, you feel different compared to having a real epileptic seizure. You "bounce" back quicker. You dont have the headaches and so forth that a epilpetic seizure causes afterwords. But then she goes on to say that what Im experiencing is not at all what a epileptic seizure causes after having a real epileptic seizure! :roflmao:
She said it sounds like its best to move forward and get a second opinion.
I told her, yes, we are looking and have been looking around. Its hard for us, because in our area, there are just local neuros who have available medications, but the testing such as the EEG, MRI, MEG Test, those are not here. We have to go a bigger town, such as OMaha, who has the testing available, but the doctors there are freaking clueless. It sucks that they have the tools available but the knowledge the drs need, are clearly not there.
Lets just say I had a good "vent" with her today!
op: 
Oops, I should have read the 1st post instead of only seeing post #4.
