Community Forum Archive

Am I off and alone here? Simple Partial Seizures

Sun, 11/03/2013 - 09:46

I 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 Nerak95 on Sun, 2013-11-10 - 23:30
Before I got past the list of your symptoms, I thought this person needs to get a new neuro! But in all honesty, I think you need to make the decision if your neurologist is someone that you can effectively work with. I understand why she would want the psychiatrist to be the one to monitor the Tegretol but when it comes to the episodes that you have, I think it’s the neuro’s responsibility to work with you on this, not the psychiatrist. Since the Tegretol XR is the medication that is being used to treat your mental illness, it’s apparent that it’s not being fully effective with what may be simple partial seizures. This could be for the simple reason that it’s just not an effective AED for these types of seizures or that the Tegretol may be provoking these episodes. My daughter experienced an increase in seizure activity while being on Tegretol but she has a rate type of seizure disorder in which Tegretol has been known to be not the right drug of choice. At any rate, my two cents would be that perhaps your Lamictal may need to be increased or that it might be worth switching to a different AED for the seizure activity. My simple opinion would be to find a neuro that would be willing to work with you and not dismiss the episodes that you’ve been having as psychiatric without adequately testing you for these episodes. Karen

Re: Am I off and alone here? Simple Partial Seizures

Submitted by Cthebird on Mon, 2013-11-11 - 10:39

@Joe, I have had several tests (CT scan, MRIs, sleep deprivation EEG, 48 and 72 hour EEGs and other EEG, oh, plus a PET scan, but that might not be helpful for epilepsy).  The sleep deprivation EEG is what showed seizure activity.  I had complained about the hallucinations and she gave me the 48 hour EEG and it showed nothing.  Honestly, I didn't have a hallucination during that period so maybe that's why.

@Karen, I don't think Tegretol XR is making my seizures worse, it's just not completely getting rid of symptoms.  I don't have symptoms every day (or every week), but maybe once or twice a month, especially when under stress or excitement, which she blew off when I said that.  Tegretol XR doesn't seem to affect my bipolar disorder.  I'm not sure if it helps, but it doesn't hurt.  Lamictal, on the other hand, has a history of making me elevated in my moods.  I once ended up in the psychiatric hospital either because of that or because it wasn't a good enough moodstabilizer for me.  I'm not interested in a higher Lamictal dose because it also gives me cognitivie impairment and makes me sweat profusely.  

I agree with both of you that I need a better neurologist.  I started with her and then switched to a man.  The man kept threatening that he'd call the DMV if I reported a seizure so I thought he was scary and useless so I went back to her.  I'm going to look for another neurologist that focuses on seizures soon.  I must admit, however, that I have a bad taste in my mouth regarding neurologists.  Neither of the 2 I mentioned above communicted with my psychiatrist, but of course my psychiatrist didn't communicate with them either.  At least, however, I really like my psychiatrist and he has gotten me stable.  After what I went through with bipolar that was a great feat.

@Joe, I have had several tests (CT scan, MRIs, sleep deprivation EEG, 48 and 72 hour EEGs and other EEG, oh, plus a PET scan, but that might not be helpful for epilepsy).  The sleep deprivation EEG is what showed seizure activity.  I had complained about the hallucinations and she gave me the 48 hour EEG and it showed nothing.  Honestly, I didn't have a hallucination during that period so maybe that's why.

@Karen, I don't think Tegretol XR is making my seizures worse, it's just not completely getting rid of symptoms.  I don't have symptoms every day (or every week), but maybe once or twice a month, especially when under stress or excitement, which she blew off when I said that.  Tegretol XR doesn't seem to affect my bipolar disorder.  I'm not sure if it helps, but it doesn't hurt.  Lamictal, on the other hand, has a history of making me elevated in my moods.  I once ended up in the psychiatric hospital either because of that or because it wasn't a good enough moodstabilizer for me.  I'm not interested in a higher Lamictal dose because it also gives me cognitivie impairment and makes me sweat profusely.  

I agree with both of you that I need a better neurologist.  I started with her and then switched to a man.  The man kept threatening that he'd call the DMV if I reported a seizure so I thought he was scary and useless so I went back to her.  I'm going to look for another neurologist that focuses on seizures soon.  I must admit, however, that I have a bad taste in my mouth regarding neurologists.  Neither of the 2 I mentioned above communicted with my psychiatrist, but of course my psychiatrist didn't communicate with them either.  At least, however, I really like my psychiatrist and he has gotten me stable.  After what I went through with bipolar that was a great feat.

Re: Am I off and alone here? Simple Partial Seizures

Submitted by just_joe on Wed, 2013-11-20 - 16:04

Ok you do have epilepsy since you posted this.   The sleep deprivation EEG is what showed seizure activity.

As for the DMV neurologists have laws to abide by and if it is state law they must follow and abide by the laws.

Now understand I do not want people to lose their license. But I do want people to use common sense. We have seen what happens when people are texting or recieving calls while driving. Partial seizures last seconds and all it takes to have an accident is a split second. What would you think or do if you had a siplal partial seizure while driving and in the the seizure the car hit another car causing an accident?

Please check your states rules regarding seizures and driving. I have been living 50+ years with epilepsy. I know how to drive in case of emergency. I have never had a license. I am not saying I don't or didn't want one because if I said thet I would be lying. But each state has laws and time limits to be without seizure before getting a license back.

Hope you use some common sense and get your meds straight

Ok you do have epilepsy since you posted this.   The sleep deprivation EEG is what showed seizure activity.

As for the DMV neurologists have laws to abide by and if it is state law they must follow and abide by the laws.

Now understand I do not want people to lose their license. But I do want people to use common sense. We have seen what happens when people are texting or recieving calls while driving. Partial seizures last seconds and all it takes to have an accident is a split second. What would you think or do if you had a siplal partial seizure while driving and in the the seizure the car hit another car causing an accident?

Please check your states rules regarding seizures and driving. I have been living 50+ years with epilepsy. I know how to drive in case of emergency. I have never had a license. I am not saying I don't or didn't want one because if I said thet I would be lying. But each state has laws and time limits to be without seizure before getting a license back.

Hope you use some common sense and get your meds straight

Re: Am I off and alone here? Simple Partial Seizures

Submitted by Cthebird on Wed, 2013-11-20 - 18:16
no comment

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 - 10:06
Hello ral.  I went to my neurologist about 8 days ago and she added Vimpat to my Tegretol XR.  So far so good.  I even saw my biggest trigger and didn't have any of these strange occurences.  If it comes back as usual I WILL seek out a specialist.

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