back from my follow up appointment.....

[momof3boys]

Well I didnt get to see HIM today! Which my gut was telling me I wouldnt. I got put with the PA. But after explaining everything to her, she went out of the room and to update him. It frustrated me to know he wouldnt take sometime out of his schedule to talk to me in person!

On the way up there to the drs, I had another "simple partial seizure" where it started out with the numbness in my hand and foot on my left side, then went to a nauses feeling, and my head then turned to the right. I kept telling myself to hold back... dont let it go further... my mom was driving and I was in the backseat with my niece. She could see me trying to fight it off... the numbness intensified and eventually it went away.

Minutes later we got to the drs, I told the dr what happened... and she said after discussing things with HIM... he is 100% positive these are NON Epileptic seizures occuring. :soap: Thats how I was feeling when she was telling me this information......

Anyways, I also brought up how the psych dr canceled my appointment on the 9th of May... and how since then the emotions have went away, no more angry, crying spells, etc. I said its funny that he chalked it up to the Keppra, and then when Im off of the Lamictal and Vimpat, Im back to my old self again... and only on the Keppra and the emotions are gone! I would think if it was the Keppra doing it, it would be just the same, if not worse! But she had no explaination as to why the emotions went away!

He wanted me to see the psych dr to get put on an anti anxiety medication. But since I no longer have the emotions, I didnt feel the need to be put on anything. So, to still make him happy and prove to him that what he is thinking are NON Epileptic seizures, are really simple partial seizures, too deep to be picked up on the EEG, Im going to go back to the psych dr I saw March 18th. and give her all the new details, whats taken place and let her review things. The nurse said its best to show the dr that Im doing what he wants by going to this pysch dr and proving to him these are not what I believe to be NON Epileptic seizures.


About the Keppra... they changed me back to the Keppra XR. The headaches are just getting worse and she said looking at my VEEG, the seizures he witnessed on the Video, those didnt register as Epileptic seizures, but the EEG came back showing epileptic activity inbetween the "seizures". So, thats why they are saying I still need to be on the Keppra. Instead of taking 2500mgs, I will be on 3000mgs of the XR since the pills only come in 750mg tablets that cant be broken in half, so with the numbness Ive been having and what I think are simple partial seizures occuring, Im hoping the increase will help take that way.

I am scheduled for a MRI on June 6th. My last MRI was in 2008. The PA said that numbness is not associated with seizures? Now from what Ive googled, I found tons of information saying numbness and tingling was associated with focal seizures... like this link....

Numbness and Tingling
Many experiencing a seizure feel numbness and tingling often described as a crawling sensation like bugs crawling on the skin. The numbness often only affects one half of the body determined by the portion of the brain affected by the seizure, similar to a stroke.
Read more:
http://www.livestrong.com/article/137329-focal-seizure-symptoms/#ixzz1NP8UpshR

I go to see the pysch dr on June 13th. I am scheduled to see my neurologist again next in 3 months... August 25th.

They also said they would be looking into taking me off the Keppra, this is from the dr himself saying this to the PA... because he thinks these episodes are NON Epileptic that by taking me off the Keppra will prove to him that I wont have any epileptic seizures... but in order to do that, they said I would have be put in the hospital for safety reasons.

Now my question is that if he truely thinks I dont have epilepsy, why would he feel I have to be in the hospital in order to be taken off the Keppra if he thinks these seizure Im having are not epilepsy related?

Just doesnt make sense half the time...

anyways, thats what the scoop is now on things. Now I have to get ahold of my pharmacy and have them fill the Keppra XR again.... luckly I have another new bottle here I had before, so I can start on that tonight and hopefully the headaches and Im praying the tingling and numbness goes away!

 

[Nakamova]

You shouldn't have to jump through hoops just to prove to the neuro what seems pretty obvious at this point -- that you are having simple partial seizures, that the Lamictal and Vimpat messed with your moods, that you do not have an anxiety disorder, and that your neuro is an incompetent jerk who doesn't know his a** from a hole in the ground.

 

[momof3boys]

You shouldn't have to jump through hoops just to prove to the neuro what seems pretty obvious at this point -- that you are having simple partial seizures, that the Lamictal and Vimpat messed with your moods, that you do not have an anxiety disorder, and that your neuro is an incompetent jerk who doesn't know his a** from a hole in the ground.

I told my mom pretty much the same thing on the ride home. I told her it feels like Im trying to tell him whats going on with my body, the positive changes with the moods going away, and how the numbness and tingling feelings are still there, along with the simple partial seizures. He just has it in his head that because those simple partial seizures didnt register as epileptic seizures on the VEEG, that I dont have epilepsy at all. Instead of taking me off the Keppra now, the PA suggested I wait the next three months and see how things go. If the tingling, numbness and the simple partials Ive been experiencing continue, then she said I would be more than likely admited to the hopsital for another VEEG evaluation.

Now my mom was there to ask some questions like... what if you let these go and they turn into complex partial seizures or even bigger seizures? The PA's response... "well, he knows these are not epileptic seizures, so that wont happen since they are not epileptic seizures".


You dont know how badly I wanted to say some nasty words! Then she tells me that simple partial seizures do come up on VEEGs. That at times they cant, but most of the time they do.

Really... why when I google things that it says all simple partial seizures are hard to be detected on VEEG/EEG's? She said they are more apt to be picked up, than not be picked up on a EEG.

There's alot of stuff that just doesnt sit right with me. My mom thinks he is wrong with these being non epileptic seizures. She tells me to wait the next three months, get back on the Keppra XR, and see how things go. In the meantime, to go back to the psych dr I saw, and let her review things. Let her see from all the changes if she feels I have anxiety. By the way, not in my entire life I was told I had until after this VEEG thats when my neuro said thats what these episodes were from. If he is such a big time dr, he should be doing more homework or else know more about seizures and epilepsy!

 

[hootie]

Are there any other doctors in your area? Maybe it is time for a change.

 

[momof3boys]

Are there any other doctors in your area? Maybe it is time for a change.

Well ive gone to the neurologists here in town, but they said they would want me to have tests done, and in order to get those done, I have to be seen a the UNMC (University of Nebraska Medical Center) where Im going to now. The drs here in town dont have the equipment that the UNMC has to do the tests needed. And since our insurance only covers neurologists in Nebraska, Im pretty much stuck with the neurologist team Ive been seeing.

The casemanager did call me this morning and said she spoke with the Dr himself. Yesterday while I was there, I had to explain to the PA and case manager the changes Ive had since getting off of the Lamcital and Vimpat. What my dr thinks is the Keppra causing the emotional roller coaster Ive been on, no longer continued after I was off the Vimpat and Lacmital. Im still on Keppra though. They switched me over to the Keppra XR at 3000mgs now. So I had to explain it to the PA that if it was the Keppra causing the emotions, they why did it all go away after I quit taking the Lamictal and Vimpat and Im still on the Keppra? I would think if the dr was right and it was the Keppra, it would be the same, if not worse with the emotions I was going through.

So I didnt want to make him mad, because he kept saying I needed to go to the psych dr to get some anxiety medication. But if the emotions are not there no more and I am back to myself, why should I have to be put on something I dont feel I need? So the caseworker said she told all of this to him, and he said if I wanted to go to the psych dr and explain all the changes to her and let her review it all, I can do that. But he didnt want to pressure me into thinking i had to be put onto an axiety medication. thats why I think all those emotions were due to the new medications he was adding to the Keppra. Now that Im back to feeling normal, Im praying that the Keppra XR at 3000mgs helps take away the headaches, and the tingling/numbness. If that works, then I know its simple partial seizures, and not non-epileptic seizures like he says they are.

Now what scares the crap out of me, is that the PA said they would re-evaluate things in three months when I see them next and if the neurologist wants me try to make me off the Keppra, I will have to put back in the hospital to do that..... my only concern is the seizures coming back and getting worse. I would have no clue as to how long they would keep me off the keppra while in the hospital. Hopefully its longer than what they did my VEEG for... I dont think they gave it enough time for me off the medications before putting me back on the Keppra again.

 

[travel bug]

Bless your heart, Momof3boys! You've had to put up with so much lately: your seizure activity, med side-effects, plus all the crap from your neuro and PA. I wish I had some ideas of what to do, all I can offer is a {hug}. Hang in there!

 

[CrunchyFrog]

All the symptoms you've spoken about sound like Epilepsy to me and I don't have any kind of medical degree.... What exactly is a Non-Epileptic seizure?? I would've thought a Non-epileptic seizure would be a one off seizure, you've obviously had more than one.
Must be frustrating, especially since you're stuck with him.

 

[Nakamova]

Non-epileptic seizures (also called psychogenic seizures) are ones that affect the body physically (i.e. fainting and twitching/jerking), but don't involve abnormal firing of the neurons. They are considered to be caused by emotional stress, especially PTSD. Unfortunately, many docs will use this as a fallback diagnosis if there isn't clear EEG evidence of epilepsy. Some, like Momof3boys's lousy neurologist will insist that the cause is an anxiety disorder, even when her seizure symptoms are very different from the symptoms of an anxiety disorder, and even when the psychiatrist has backed her up.

 

[momof3boys]

Thank you everyone. Im going to do the best I can, and my plan is to let this psych dr that my neurologist sent me to see on March 18th, and let her review all the changes and see what she thinks. If my neurologist doesnt want to go with what I believe is happening, the nurses at his office thinks its best to let the psych dr review things and let her determine what is going on.

I know in my heart and my gut that these are not non epilpetic seizures. Like we said a couple of days ago at the appointment with the PA that ive never had any problems with anxiety, and bringing up the fact that I was on the the carbatrol and keppra for almost 12 years together, with my last grand mal being in 2000.... when he took me cold turkey off all those medications and it causes these new seizures to come about, Ive read lots of information that says when doing that it can cause different seizures than what youre use to having. Now the DR and PA are saying thinks like thats not possible, and the numbness and tingling sensation I had are not associated with seizures, when thats what comes up when you search simple partial seizure symptoms.

Its all confusing and I have to keep telling myself to just not let it bug me, take the Keppra XR, and lets proof them wrong! The PA ordered a MRI for June 6th, and the reason she did is becuase she thinks the numbness and tingling (since she says its not with seizures....) could be something else causing that, like a tumor, etc. I highly doubt thats the case. Like I told her, my last MRI was in 2008, all came back clear and normal. The numbness and tingling didnt start til after I was taken off all my medications cold turkey. Since then, I think its been hanging around because I havnt been put back to my full dose of 3000mgs of Keppra XR, and of course I dont have the carbatrol to help me too.

 

[valeriedl]

I had alot of problems with my neuro's PA, I would go and see her every other visit. She would tell me that I wasn't taking my meds and really wouldn't listen to what I had to say. She would just come up with reasons as to why things where happening and that was that.

I got to the point that I wasn't going to see her any more and was only going to see he neuro himself. I once had to make an appt with my neuro because things were happening out of the ordinary and wanted to see him before my normaly scheduled appt.

His secretary told me that I would have to wait a week to get an appt with him but I could see his PA the next day.

I told her that I'd see her (his secretary) before I'd see his PA again and that I'd wait the week. I haven't seen his PA since, they never even try to schedule an with her.

Is your neuro in an office all by himself or are there others in there with him? If there are others maybe try seeing them. I'd think they would have access to the test results without having to order new ones. Even if you'd have to drive a little further to see a neuro that is located in Nebraska it maybe worth it for you in the long run. I travel about an hour to see my neuro who is located at the University of Pittsburgh. There are neuros closer to me but this one seems to beable to do more tests and have them done in a quicker time that the others do. He has access to more equipment and things like that than others do.

 

[momof3boys]

I had alot of problems with my neuro's PA, I would go and see her every other visit. She would tell me that I wasn't taking my meds and really wouldn't listen to what I had to say. She would just come up with reasons as to why things where happening and that was that.

I got to the point that I wasn't going to see her any more and was only going to see he neuro himself. I once had to make an appt with my neuro because things were happening out of the ordinary and wanted to see him before my normaly scheduled appt.

His secretary told me that I would have to wait a week to get an appt with him but I could see his PA the next day.

I told her that I'd see her (his secretary) before I'd see his PA again and that I'd wait the week. I haven't seen his PA since, they never even try to schedule an with her.

Is your neuro in an office all by himself or are there others in there with him? If there are others maybe try seeing them. I'd think they would have access to the test results without having to order new ones. Even if you'd have to drive a little further to see a neuro that is located in Nebraska it maybe worth it for you in the long run. I travel about an hour to see my neuro who is located at the University of Pittsburgh. There are neuros closer to me but this one seems to beable to do more tests and have them done in a quicker time that the others do. He has access to more equipment and things like that than others do.

My neurologist is in the same office with the PA I saw, I know he is the main neurologist there.. So far Ive only seen him and the PA. I looked on my card they gave me for next time and they have me scheduled again with the PA. The only time I got to see him was when I first went to him. I actually saw the PA first, and then he came into the room at the end of the appointment to introduce himself. My next time I saw him was at the VEEG. Since then, we have spoke over the phone with things going on since he tried two new medications, but I havnt seen him since being released from the hospital for the VEEG.

I have googled the neurologist's the UNMC has to offer and its pretty much just him and this partner I use to see before him. His partner is now at another hospital, and in charge of something else... so Im not for sure exacly if he still see's epilepsy patients, or if he's head of something else?

So far, I cant tell if the PA Is in his side, or what.... She wants me to have a MRI, so I will do that for her on June 6th. One thing I dont agree with her is that she says numbness and tingling is not associated with seizures? Everything Ive looked up with simple partial seizures all list tingling and numbness as a symptom. So I have no idea why she would say its not related to seizures?onder:

 

[Endless]

Doctors (and PA's) are not perfect. I even have my epi tell me something isn't a seizure, when the literature says it is, and a bunch of people in here have the same thing. When I ask him he just says it hasn't held true in clinical practice. In other words, if he hasn't seen it it doesn't exist!

 

[momof3boys]

Doctors (and PA's) are not perfect. I even have my epi tell me something isn't a seizure, when the literature says it is, and a bunch of people in here have the same thing. When I ask him he just says it hasn't held true in clinical practice. In other words, if he hasn't seen it it doesn't exist!

Thats pretty much how my dr is seeing things too! He told the PA and the caseworkers that I do have epilepsy, its just the seizures that i had during the VEEG were not registering as epileptic seizures. He said its a possibility that they are too deep to be picked up by the EEG, but then months later, he just throws that theory out the window and from then on says they are non epileptic seizures and to go to a psych dr!

 

[Endless]

Grrrrrrrrr!

I'm glad mine stuck with me. I've never had a positive EEG either. I think we are finally near the right dose of seizure meds. 300mg of Lamictal, though my blood levels are still showing pretty low. Guess I have a really good liver. Anyway, several triggers are no longer triggers. It's like somebody removed a burr from under my saddle.

Now, if I could only get my *other* neurological issue resolved. It isn't going quite so well. The medication (diamox) is trashing out my stomach and I'm either in pain or tossing my cookies. And the pressure in my head isn't under control yet and I have pretty bad headaches and feel pretty stupid on the bad days.

Well, here's hoping your doc comes to his senses.

 

[momof3boys]

Grrrrrrrrr!

I'm glad mine stuck with me. I've never had a positive EEG either. I think we are finally near the right dose of seizure meds. 300mg of Lamictal, though my blood levels are still showing pretty low. Guess I have a really good liver. Anyway, several triggers are no longer triggers. It's like somebody removed a burr from under my saddle.

Now, if I could only get my *other* neurological issue resolved. It isn't going quite so well. The medication (diamox) is trashing out my stomach and I'm either in pain or tossing my cookies. And the pressure in my head isn't under control yet and I have pretty bad headaches and feel pretty stupid on the bad days.

Well, here's hoping your doc comes to his senses.

Im glad youre medication doses are getting on track for you. I hope the other issues youre having resolve soon! Im still getting the numbness and tingling, but Im going to see if the increasing my dose of Keppra XR will help with that. I'll have to give it sometime for my level to get to where it should be.

Thanks for the support. Im really hoping things start to turn around and maybe the pysch dr I will see again on the 13th of June can see where Im coming from and convense my neuro to see it the same way!

 

[BigWill]

It sounds like you definately need to make a neurologist switch. How do THEY know what is going on inside your brain and what YOU feel when you have a seizure? Some people arent very understanding or show much compassion and just go by the books/think they know it all. I also recently had a dosage change and was weaned off Topamax and had my Keppra upped to 3000 mg a day. Its also the XR. All i can say is get ready to be pissed off easily.

I forgot to mention I just returned from your state two days ago, its a nice place when everythings not covered in snow!

 

[momof3boys]

It sounds like you definately need to make a neurologist switch. How do THEY know what is going on inside your brain and what YOU feel when you have a seizure? Some people arent very understanding or show much compassion and just go by the books/think they know it all. I also recently had a dosage change and was weaned off Topamax and had my Keppra upped to 3000 mg a day. Its also the XR. All i can say is get ready to be pissed off easily.

I forgot to mention I just returned from your state two days ago, its a nice place when everythings not covered in snow!

Yeah I hear what youre saying. Ive been on the Keppra XR since November of 2010 and I havnt had any mood problems with it so far. Before then, I was on the Keppra 500mg tablets, at 3000mgs daily. The headaches were the worst part of that! Once they switched me to the XR, all the migraines and headaches I had each day dissappeared! Im on day 3 of the XR now since my dr was trying to wean me off the Keppra before with the 500mg tablets. Now that he has no other medications to try, I have to stick with the Keppra XR 3000mgs til I see him next, and see what the plans are.

Nebraska is a nice place, but I agree, I hate the snow here! It sucks!

 

[mel239]

my epi pulled something similar also-told me i would never work in a factory again and to look for an office job and file for early retirement as soon as possible and 6 mos later his PA filled out my work papers sending me back to work since she said my seizures were well controlled in her opinion and they denied my retirement and epi backpedaled and said I could work again and now my factory doesnt know what to do with me except pay me a minimal disability until the dr office can get their story straight