Saw neuro today not happy

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acpollard2010

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I went and saw my neuro today no surgery and he thinks my seizures are non epileptic these are from having e.really he says since im use to havin seizures im now making myself have them I knew I was going to hate this guy I want to cry.he checked my vns says will need a new battery soon.
 
My neuro said the same thing in march 2011. He even referred me to a psych dr, who i saw and everytime I saw her, she asked if I was having seizures like I had during the VEEG, which my dr said did not register on the EEG, and because of that, they were non epileptic seizures. Well, the last time I had a seizure like that, was the day after being released from the VEEG. None since then. Which then told the psych dr, that after being put back on the Keppra XR, the seizures stopped, which only will stop epileptic seizures, Not Non-epileptic seizures.

Are you currently taking any seizure medications?

some drs out there think they know it all.. and jump ahead to conclusions that are just not right. I was pretty confused and upset at first too. But over the past year and a half, Ive come to terms with the facts. Knowing I havnt had a seizure like that since, and the Keppra XR is controlling them, it doesnt take a genius to see things... the seizures I had are epileptic seizures and not non epileptic. My dr can think what he wants to think.

Sometimes we have to push what drs say aside and listen to what our bodies are telling us.
 
Ya im gettin weaned off keppra starting today,but I take lamictal phenobarbital topamax and ativan prn.he just wont listen even my wife is on da bandwagon she just wants my epilepsy to go away.
 
thats one thing my neuro tried to do to me in april 2011. About a month after the VEEG, he told me he wanted to try to wean me off the Keppra, very slowly... going down 250mgs each week, which would have taken 12 weeks total to get completely off of 3000mgs of keppra. But in the meantime, wanted to start me on Lamictal. Little did I know, he was doing it becuase he thought I was having non epileptic seizures, which in return he was wanting to show me that if the Lamictal worked, which treats epileptic seizures, and is also used for anxiety attacks, which is what he told me I was having during the VEEG in march 2011. Two weeks after starting the lamictal, I was told by my primary care dr, that was having a severe reaction to the lamictal, and i had to be taken off of this medication ASAP. Once this was told to me, I contacted my neuro ASAP. He got very frustrated, it was my 30th birthday, and he admited to me that day that he put me on the lamictal to show me that I was having anxiety attacks, AKA non epileptic seizures. Talk about wanting to reach through the phone and strangle the guy! Once I quit the lamictal, all that nasty stuff I had to go through was gone! I was put back on the Keppra XR at 3000mgs a day, and havnt had any problems since.

Now just a week ago, he tells me I have Epilepsy, and I can easily have any kind of seizure. When almost a year and a half ago, he told me the opposite. I didnt have epilepsy, I had non epilepsy seizures, AKA anxiety attacks...

But I proofed him wrong! It took me going to the psych dr to let her see what I was talking about. With going to her, and her sending over her notes to my neuro, and having to go through the process of trying medications, Ive had to proof to him that I was not having non epileptic seizures. My pysch dr, and everything Ive read online all indicates that anti seizure drugs do not control epileptic seizures. If you have non epileptic seizures, you can be put on one or ten seizure drugs, and it will not prevent the seizures from coming.

What dose are you now on of the Keppra?
 
Was on 3000 going down to 2000 in the morning for 2wks then a 1000 for 2wks and 2wks after that he wants to see me again and he is also a epileptologists.not that it matters since it seems he dnt really want to help me I will go see his stupid shrink.prove em all wrong
 
My neuro dr is also a epileptologist. That sounds like a pretty big decrease at each time. Make sure you write down all of what you are feeling. Anything! Yes, do go see the psych dr. I did just to proof him wrong! I didnt want to, but it was the only way I could think of to show them that what he thought I had, was not true! I know its hard, but we sometimes have to do things we just dont want to do. hang in there. Were all here for you!
 
Wait -- you have a VNS and are on at least three meds, and your neuro still thinks your seizures are NON-epileptic? Does he have any suggestions for how to treat these seizures that you are "making yourself" have? Does he want to take you off all your meds?
 
He seems to think that these meds along with the vns are controlling my epileptic seizureswhich I know is bullshit people have witnessed me seize again he comes back with they look very similiar but for the last 14yrs they been epileptic mind boggling to me im so confused and upset.he didnt say anything about being on 3meds and having vns?
 
Nakamova said:
Wait -- you have a VNS and are on at least three meds, and your neuro still thinks your seizures are NON-epileptic? Does he have any suggestions for how to treat these seizures that you are "making yourself" have? Does he want to take you off all your meds?
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:agree:

Oh ac I am so sorry to hear that's how it went. What a let-down. An epileptologist that actually suggests you're 'making yourself' have them. Wow what a treat. How can he say that knowing your history and that you have a vns?
 
I know I was quite shocked myself all he did was go by my ex drs notes kept reading then he would say something and my wife says im twisting words I know wat I heard im no idiot when it comes to this maybe a lil slow but know what I heard.all my life they been tellin me I have e and now they want to add to it.still very frustrated
 
These docs are lucky they don't get punched in the face. I know I've wanted to after they say something stupid like that.

I always take things like "its in your head" or "it could be psychological" as code that the doc has know clue what to do, doesn't know what he is talking about, and his ego won't let him admit it.

I keep wishing I could come across a neuro that actually has epilepsy themselves and has had to try different therapies in their own lives. I think that would make someone a hell of alot more understanding.


Hang in there bro.. I know how depressing this can get. If nothing else, I just try to get away from it, even if only for a short time, by focusing on something I enjoy.. just to give the nerves a break.
 
:( all so disheartening... how can a branch of medicine be so archaic.... its 2012 for crying out loud .... these docs flip flop more than politicians!!!! Be true to self ac. You know you better than anyone :) trust your instincts and fight for proper care.
 
I go back in 6weeks until then gonna go see his shrink and compliant with this so called treatment.glad to get off keppra though she doesnt want to give me ativan or any other prn cause thats more a mental health issue wth! No its not its to stop me from clustering!
 
Dignan said:
I always take things like "its in your head" or "it could be psychological" as code that the doc has know clue what to do, doesn't know what he is talking about, and his ego won't let him admit it.
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Well put, that is a very good point. I'll keep that in mind in case I ever have to deal with one again.

Dignan said:
I keep wishing I could come across a neuro that actually has epilepsy themselves and has had to try different therapies in their own lives. I think that would make someone a hell of alot more understanding.
Click to expand...

Yes what a difference; I've read the odd post on here in regards to a doc that had epilepsy, and even ones that have family members with it, and the way they handle it is apparently night and day from your average run-of-the-mill.


acpollard2010 said:
though she doesnt want to give me ativan or any other prn cause thats more a mental health issue wth! No its not its to stop me from clustering!
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What? Why? The only time Ativan has ever been brought up or given to me was to keep in my purse in case I feel a seizure coming on. And this was just from my regular physician, christ you'd think a neuro would be even more educated on it than that.
 
qtowngirl

You took the very words I was looking for, "christ you'd think a neurologist would be even more educated on it than that". Thank you.
 
You are in the EXACT same position as me right now. I have had them switch my diagnosis to many times. I have seen to many shrinks, only for them to tell me to see Neuros. When you go through all this over and over it really does make you just want to break down. We are here for you though, always remember that!
 
Yup it's ridiculous. My diagnosis has been E for nine years, but one time I did have my neuro of 7 years question a grand mal because it was the first one without a witness. He (ooh this makes me so tense) asked how I didn't know that I had just fainted. I told him for one when you faint you just fall, whereas I had banged into half a dozen things on my way down, things I never could have hit with those body parts unless I was convulsing, as well as the fact that it followed a simple partial, as well as the fact that I have Epilepsy!!!!!!!!!!!!!!!!! He then suggested that it wouldn't hurt to see a psychologist - and that was the last time I ever set foot in his office.

This is our brains folks. We need the utmost in experience and rationality (and some friggin' bedside manner while they're at it!) and shouldn't stop until that's what we've received.
 
acpollard2010 said:
He seems to think that these meds along with the vns are controlling my epileptic seizureswhich I know is bullshit
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:agree: 100%. I, too, have the VNS and am currently taking 2 AED's. All this AFTER a lobectomy. The VNS doesn't control the seizures completely. I have mine at the highest setting, too. I see an epiletologist also, and she has never suggested that my seizures are NON-epileptic. Some of us have refractory E and nothing is going to 100% control our seizures, unfortunately, unless they come up with some miracle/magical solution in the near future.

And when you go to a shrink, make sure it is a neuropsychiatrist. Otherwise, they don't have a clue of what to do, either.
 
Dignan said:
I keep wishing I could come across a neuro that actually has epilepsy themselves and has had to try different therapies in their own lives. I think that would make someone a hell of alot more understanding.
Click to expand...

Well my epileptologist doesn't have E herself, but her daughter (now grown) does, so that has helped her tremendously with understanding. She is a very caring dr. and that does make a difference.
 
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