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  #21  
Old 05-05-2012, 08:20 PM
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I think that you should do what you feel is right for you. Of your unsure then give it a try and if you don't like it or dont think it's for you then you don't have to continue. The reason I did it when my doc told me to go is to prove them wrong. Does that make sence?
Well let us know.
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  #22  
Old 05-05-2012, 08:24 PM
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Originally Posted by JLogefeil View Post:
I think that you should do what you feel is right for you. Of your unsure then give it a try and if you don't like it or dont think it's for you then you don't have to continue. The reason I did it when my doc told me to go is to prove them wrong. Does that make sence?
Well let us know.
Good Luck
Thats the exact reason why I went to. I wanted to prove them wrong and show them what I was experiencing was in deed epileptic seizures.
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Left Temporal Lobe Epilepsy
Keppra XR (3000mgs)
Carbatrol (400mgs)
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  #23  
Old 05-05-2012, 08:26 PM
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Same here. Momof3boys
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  #24  
Old 05-05-2012, 08:28 PM
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Momof3boys: So what did they do? Did they ever find out what's going on with ya? We're the doctors mad when you proved them wrong?
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Old 05-05-2012, 08:51 PM
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Originally Posted by JLogefeil View Post:
Momof3boys: So what did they do? Did they ever find out what's going on with ya? We're the doctors mad when you proved them wrong?
Well, I was referred to this psych dr by my neurologist. When I went to see this psych dr, she asked why I was there? I assumed my neurologist had sent over my records, but apparently he didnt. So I brought up the video EEG, and how some of the seizures that I had didnt register, and that my neurologist thought they were non epileptic seizures. She asked if I ever had these seizures before? I explained ive had complex partial seizures and grand mal seizures my entire lifetime. My last grand mal seizure being in 2001, so it was 10 years ago (at the time I saw this dr) and then the complex partials, my last was around the time my second son was born. I think. Anyways, I started out by saying Ive never been "cold turkey'd" off any seizure medication in my life before, and thats what this dr did. I had taken my last dose of Carbatrol and Keppra the night before I was admited, and that morning after being hooked up for the video EEG, my dr comes in to tell me I wont be having any medication at all! The psych dr was very suprised that my dr did this. Especially suprised that he didnt take into account how the body would respond with going for all those years, practically my whole life.. at the age of 18 months I was put on medication for seizures. Then one day just quitting. No cutting back, just stopping everything at once. Then to find out that after being put back on the Keppra, everything went away. Where as she told me if they were non epileptic seizures, they wouldnt be able to be stopped by anti seizure medications. If they were seizures caused my "anxiety" how my neurologist thought they were, (why he thought that, I have no clue, since I told him Ive never experienced anxiety problems in my life) then I would be having these seizures when I was stressed out over things, or they would be happening despite the fact I was on Keppra. But since being put back on the Keppra, I had small seizures the first few days after getting back on the keppra, then they all went away. So that there, along with her getting the EEG results, which she could see the epileptic activity on the EEG, said that what he was seeing on the video, and it not registering as epileptic seizures, was probably due to the fact that they were so deep in the brain, the EEG didnt pick them up. Also to point out, that after being on the Keppra, they all stopped. Those two things pointed out to her, said they were in fact not non epileptic seizures. She said she would point this out to the dr. It was around June/July 2011, (about three months after getting my video EEG done) that I last saw her. I then saw my neurologist in August of 2011, at my last appointment, and he said he was fine leaving me on the Keppra. I asked in May to be switched over to the Keppra XR due to it causing alot of headaches. and Ive been on that since. He did bring up at my last appointment how he would like to "wean" me off of Keppra again. Something I dont want to go through again. But, so far I have yet to hear back from his office. I guess they are relocating and they had to "reschedule" all of his appointments. So the appointment I had scheduled for august 31, 2012 had to be canceled and Im waiting to hear back to see when they can fit me into his schedule. Other than that, I didnt see any reaction on his face the last time I saw him, as to his response from the psych dr. I didnt want to bring it up, but I just said that since he referred me to her, (the psych dr) she concluded that I was not having non epileptic seizures. He didnt say nothing to that. So the only thoughts that came to my mind were these... 1) he is either thinking she is wrong and he is right.. and didnt want to bring it up... or 2) he was too embarrassed to bring it up knowing that the psych dr didnt see them as non epileptic seizures. who knows. All i know is that Im doing great now. As long as I get the rest I need, I dont get any seizure activity.
They can plainly see that I have left temporal lobe epilepsy, and the keppra is doing the trick my controlling the seizures.
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  #26  
Old 05-05-2012, 09:06 PM
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That's kinda what I m going though.
They thought I was having mon epileptic seizures and they wanted me to see a pych so I did. He said that what is causein my seizures is not stress. So he SSI that prob the reason they didn't see anything on the EEG was because my seizures are to beep in the brain.
I m worried that when I go see my Nuroligist they wount beleave me and think I m faking it. This will be my first time seeing a Nuroligist I don't know what to expect or anything, the last time I was in the hospital they prescribed me 500mg Keppra and I still have seizures but I don't know if it's becuase they need to up my dose or put me on something else. I haven't had one today but had a lot of Tonic clinic yesterday. My husband thinks that since I have been taking Keppra my seizures are that strong.
I think you should call the office and see what's going on with your appointment.
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  #27  
Old 05-05-2012, 09:33 PM
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I did call yesterday and was told they still dont have the neurologist's schedule for the new office and took my name and number to call me when they have his schedule available. But of course they told me that two weeks ago too. So for them to still not have his schedule, suprises me since he is a very busy dr.

Have you asked if they can increase your dose of Keppra? 500mgs a day is a low dose. Heck I take 3000mgs a day! The lowest ive got on Keppra was at 2500mgs a day, and at that time, I had this numbness feeling in my feet all the freaking time! It was the same feeling I had when I was in the hospital for my video EEG. At the beginning of each seizure, I would get this feeling like something wasnt right, then my stomach felt sick, my heart would begin to beat really fast, and my feet and hands felt like a million needles were attacking them. That feeling would go all the way up my body, to my face, and my head would then turn to the right, my body begins to stiffen and jerk. Im aware of this going on, but I cant control it. Its like this seizure is taken over my body and there is nothing I can do but wait for it to be over. Afterwords I feel so tired, weak and sore. My head kills me. Im sleepy afterwords too.

When are you scheduled to see this neurologist again? I wouldnt want to wait too long and have more seizures. If anything, do they have a on call service where you can call and tell them the 500mgs of keppra is not controlling the seizures and you are still having them. Ask them to increase the amount of Keppra and see if any changes occur.
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Carbatrol (400mgs)
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  #28  
Old 05-05-2012, 10:08 PM
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I don't think they have a on call service. I thought 500mg was a high amount but I don't know anything about the seizure pills. What seizures do you have?
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  #29  
Old 05-05-2012, 10:27 PM
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I grew up having tonic clonic seizures and complex partial seizures. Since having the video EEG in march 2011, Ive been having simple partial seizures. Where Im consious through out the seizure, rather than not consious with complex partials or tonic clonic seizures.
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Left Temporal Lobe Epilepsy
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Old 05-05-2012, 10:28 PM
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Oh I forgot to add, since being on keppra, around the age of 17 or 18 years old, Ive always been on 3000mgs a day. Along with Carbatrol at 1200mgs a day. since March 2011, ive been on Keppra XR 3000mgs a day. So far, Ive been good. But I would think the 500mgs of keppra is not holding back the seizures and they would want to increase your dosage.
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  #31  
Old 05-08-2012, 09:06 AM
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Momof3boys, you mentioned that the dr's may think your faking. I DREAD calling my doctors office after a bout of seizures. They make me feel like I'm just stupid and every time they ask if I've seen the psych yet. I really have a hard time understanding anymore why this is so difficult for the dr's understand. I'm even seeing a seizure specialist (my second) but he seems to want to treat everyone the same and blame it all in depression. I was avoiding seeing the psych but now I can't wait. I'm going to love it when they tell my neurologist I'm not crazy and they should pay more attention to what I'm saying!!!
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Old 05-08-2012, 09:10 AM
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Oh and I'm pretty sure that's why my dr put me on Lamictal, for anxiety/depression but didn't exactly say that. But the more they increase it the more short tempered, agitated, and moody i get, just like when I had too much Keppra. Of course, if I tell them that they'll think I'm just going through a bout of "my depression". Ugh!!!
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Old 05-08-2012, 08:59 PM
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I later found out from my dr that he told me at first he was putting on the lamictal for seziures, But after having severe reaction to it, I went to my primary care dr who confirmed it was from the lamictal, I told my neurologist and he got mad, told me straight out he put me on the lamictal because he believes I have anxiety related issues causing seizures to occur. Oh really. Why the heck lie to me before and tell me you want to put me on lamictal to control my seizures? Talk about being mad! But I proved him wrong! Two months after all of this took place, the psych dr even said I wasnt having non epileptic seizures! I saw him in august of 2011 and he agree'd to keep me on the Keppra XR. Ive been good since! It just needs to be shown to all doctors that they dont know everything!
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  #34  
Old 05-10-2012, 11:08 PM
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I agree with you completely momof3boys! Some of these doctors just refuse to step out of the box and if what's inside the box isn't working then it must be a psychological problem...ugh. I can't wait to see the neuropsych now (I've been put on a waiting list so I can see someone who takes my insurance) and hope that I can maybe make my dr realize everyone is not the same! It's glad to hear that the neuropsych got you and your neurologist straightened out and you have been feeling good. I hope that continues. Good luck!
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  #35  
Old 05-11-2012, 12:15 AM
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Always get a copy of your chart notes, techicians notes (if applicable), and test results after every appointment, test, or procedure, and read them. Always. Always. Always. I can't stress this enough. I've learned that most doctors tell us about 1/5 of what's in those notes, the rest I really needed to know, if only to check for correctness, have a copy for my files, or info that is pertinent but the doctor didn't tell me about it. (sometimes because they don't want to discuss it with you or don't want you to know but they want it documented)

Even though a neurologist may have misdiagnosed a patient and sent them to a psychiatrist for the wrong reason, there are still reasons to go. There are neuropsychiatrists that know just as much or more about our seizure drugs than the neurologists do. If the meds are resulting in anger, depression, sleepiness, a feeling of drunkenness, stupor, etc., the neuropsychiatrist can rebalance your meds, subtract something, and maybe add something else. I wish I had seen a psychiatrist when I was on Trileptal. If I did I might be still on the drug now. Psychiatrists can also prescribe anti-anxiety drugs or anti-depressants, and can sometimes figure out one drug that can help two or more problems, all at the same time (like seizures, depression, and pain). That can minimize the number of drugs you take and the number of side effects.

The trick is in finding a good psychiatrist. Just like anything else, there are good ones, there are bad ones, and a whole lot that are inbetween.

For everyone who has been misdiagnosed. Hang in there. The road to diagnosis is a long and windey one. Sometimes handling the doctors is worse than the seizures. Finding a good doctor means talking with a lot of frogs before you finally find the prince.

My diagnosis process took 2 years. It turns out that another medical condition is causing my seizures. I was misdiagnosed 5 times by 5 neurologists, then there is the one neurologist that got it right.

It's not like my current neurologist made a subjective guess. After he heard my symptoms he ordered a definitive test with objective medical data. Boom, there it was. Positive. The other 5 doctors didn't even bother looking, even when I described my numerous types of pain (typical symptoms), though one of them did look but misread or misinterpreted the test result. I was still frustrated, demoralized, and in a lot of pain, with seizures added in as a bonus. The disease is bad enough, but it's the doctors who sent me to hell and back. I'm happy to say that thanks to my current neurologist, now I'm on the right track. We don't have it fixed yet, but we're trying.

Keep on going. It takes strength, and you will find it even when you think you've run dry.

Last edited by Endless; 05-11-2012 at 12:29 AM. Reason: awful spelling
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  #36  
Old 05-11-2012, 12:56 AM
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Thanks, I m glad you found a good doc/ prince and I hope I find mine.
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  #37  
Old 05-11-2012, 02:31 AM
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Hi, Quite a few people in this forum are seeing neurophsycologist. It might be helpful.

For stress, I listen to calming music. You can go to Speber's Auditorium and listen to music.

There is also Music biofeedback and neurologist biofeedback. You might check these out.
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