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Am I off and alone here? Simple Partial Seizures
Sun, 11/03/2013 - 09:46I only see my neurologist once every 6 months or so. I'm happy about that. The reason why is because though she diagnosed me as having Simple Partial Seizures every time I mention my symptoms she tells me it is psychiatric-based. I do have a psychiatric condition, but I know A LOT about it and the symptoms I describe to her are not related to my mental illness. So, I surf the net a lot and try to see if anyone else has what I believe is "seizure activity". I find all of my symptoms plastered over one website after another.
Here are some of the symptoms I've had:
Repeating words - yes, she thinks it is SPS
Laughing jags - yes, she thinks it is SPS
Urge to run - I'm not sure if that is SPS or psychiatric
Musical hallucinations - She thinks it is psychiatric, my psychiatrist thinks seizure-related
Visual hallucinations when I'm stable - I can only assume they are SPS because I don't have schizophrenia. Some I've only assumed were hallucinations because to be real they would be absurd.
Time and space distortions
Auditory hallucinations (sound of radio, ambulance siren, etc.)
Olfactory hallucinations (always smoke)
Deja vu (I've had this only a few times)
If anyone can relate that would motivate me to get a new neurologist. I don't want to know more about SPSs than my neurologist.
Also, my neurologist has my psychiatrist handle my seizure med. The main reason is because it is also a medication for my mental illness and I see my psychiatrist much more often than the neurologist. Currently I take a therapeutic dose of Tegretol XR (1400 mg) and also a small dose of Lamictal (100 mg). I wonder why I still have these symptoms occasionally. Yes, occasionally, but at least some of them once per month.
Some of the hallucinations and time/space distortions are only noticed by me, and usually after the fact. Initially I wonder if they are really real. Only a little after do I decide they're not.
If anyone has some feedback or can tell me if you relate or not, I'd really appreciate it.
Comments
Re: Am I off and alone here? Simple Partial Seizures
Submitted by just_joe on Mon, 2013-11-11 - 09:59
First let me state that I think you may need a specialist or a new neuro. You did not state whether you had had any tests. If the neuro had run tests they may have seen something in the EEG which would show where the seizure activity is coming from. It might be time to get a new neurologist. Mine does contact my other docs and in their convcersations they do discuss changes which means all of my doctors know what is happening to me and why.
Most of the things you posted can and are types of things in several types of seizures. I know tegratol and I know it is used to control seizures in some people. I do know medications can be used for other things. Some people can handle or take more medication then others can. Some people need a little medicine others need more. As for vimpat you are on a small dosage. I started with that50 mg twice daily. It has been increased to 150 twice daily. Knowing what I know your vimpat dosage may need to be raised.
Tegretol is a good medication. It works on the entire nervious system. Many medications are being created to work on types of seizures rather then the entire system.
I have been lucky to have neurologists that have all been in the same group since 1970. My first retired the next specialized in AZ, the next moved to seatle washington, the next retired, the one I have now was in the group back in the late 1980's and he specialized in epilepsy.
I wouls suggest that you get a neurologist that specialized in epilepsy and see what tests they want to do so they can come up with medications or procedures which would help reduce the number of seizures or get you seizure free. Also go to the top of the page and bring up the seizure diary and listen to what it can do and use it that does help because the neuros can look at it and see the number of seizures and other things in the diary which would anso help him think of other things that might work at cutting the seizures down.
I hope this helps
Joe
First let me state that I think you may need a specialist or a new neuro. You did not state whether you had had any tests. If the neuro had run tests they may have seen something in the EEG which would show where the seizure activity is coming from. It might be time to get a new neurologist. Mine does contact my other docs and in their convcersations they do discuss changes which means all of my doctors know what is happening to me and why.
Most of the things you posted can and are types of things in several types of seizures. I know tegratol and I know it is used to control seizures in some people. I do know medications can be used for other things. Some people can handle or take more medication then others can. Some people need a little medicine others need more. As for vimpat you are on a small dosage. I started with that50 mg twice daily. It has been increased to 150 twice daily. Knowing what I know your vimpat dosage may need to be raised.
Tegretol is a good medication. It works on the entire nervious system. Many medications are being created to work on types of seizures rather then the entire system.
I have been lucky to have neurologists that have all been in the same group since 1970. My first retired the next specialized in AZ, the next moved to seatle washington, the next retired, the one I have now was in the group back in the late 1980's and he specialized in epilepsy.
I wouls suggest that you get a neurologist that specialized in epilepsy and see what tests they want to do so they can come up with medications or procedures which would help reduce the number of seizures or get you seizure free. Also go to the top of the page and bring up the seizure diary and listen to what it can do and use it that does help because the neuros can look at it and see the number of seizures and other things in the diary which would anso help him think of other things that might work at cutting the seizures down.
I hope this helps
Joe
Re: Am I off and alone here? Simple Partial Seizures
Submitted by ral on Wed, 2013-11-20 - 09:54
i'm a big believer in you know best.
it certainly sounds like something doesn't feel right to you ... if so, move along!
i'm a big believer in you know best.
it certainly sounds like something doesn't feel right to you ... if so, move along!
Re: Am I off and alone here? Simple Partial Seizures
Submitted by Cthebird on Wed, 2013-11-20 - 18:16
no comment