Im done with my neuro!

[momof3boys]

After trying the generic keppra xr and having seizures, Ive been back on the Name brand Keppra XR for 6 days now. I had my first seizures since taking the generic, Friday night at 2am...november 30... that next morning, my next dose I took the name brand. I had saved two weeks of the name brand if something like this were to have happened.

Then came another seizure monday night... then wednesday night. Ive had lots of auras during the day... but it hasnt let to seizures.

What I had on hand for ativan, was prescribed to me last november 2011 when I was dx'd in the ER with bronchitis and was given Hydrocodone. Not knowing when taking that with Keppra XR, it will lower my seizure threshold and cause seizures, I took it, and found out I was having night seizures. So I had to stop. I was given a prescription for .5mg tablets of ativan for chest pain and to stop the seizures from coming in November 2011. Havnt touched them since. Now these seizures come up since trying the generic keppra xr, and I had those on hand. I know they were over a year old, but I had to take them.

I have 1 ativan left, and since Im still having seizures, I wanted to check in with my neuro's office to see if I can get a small amount incase the seizures dont want to stop. I pray they do... but just incase.

I leave voicemail, and today I get a call back from the drs nurse, saying my neuro wont prescribe me the ativan, I have to go back to whoever prescribed it for me last year.... GET THIS..... DRUM ROLL PLEASE.....

to Treat my "Anxiety!"

When they hell did someone tell me I have anxiety?

Would you call giving me ativan due to seizures occuring for taking hydrocodone when dx'd with Bronchitis, resulting in seizures "anxiety"?

Hell no.

So Here I sit... still only 1 week left of name brand keppra xr.
Still having break through seizures, which last time I was put back on the Keppra XR after having my VEEG last year, It took me between 3-4 weeks to get to a good level and stop having seiuzres. Im on day 6. My neuro wont give me ativan. If I have a seizure, I have one ativan left and thats it. I have to go without taking anything to prevent another seizure from coming on.

I freaking give up with this neuro's office. To tell me they see me having anxiety, when I simply gave a generic seizure medication a try for two weeks and had to go back to name brand... is anxiety... they have their heads stuck up their butts! Im so looking around for a new neuro!

 

[momof3boys]

I heard back from my primary care drs office! They sent me over 10 tablets of the ativan to get by on, incase the seizures occur during the transition back to the brand name keppra xr. Im so happy someone can see where Im coming from!

As for my neuro's office.... Im in the process of contacting a new neuro's office. If they will accept me as a new patient, I am going to contact my neuro's office and sign release papers for all my records to be sent to the new neuro. Im so done with this neuro dr. Telling me the seizures are NOT from the changing medications, going from brand name, to generic and now back to the brand name... and its all about 'Anxiety" when I havnt ever had any issues with anxiety, or been dx'd or treated for it!

 

[Cint]

Sorry, Kristin, that the neuro is so ill-informed. My neuro knows that generic meds DO lower my seizure threshold, therefore she prescribes ONLY the brand name Keppra. And I have had ativan for break-thru seizures. I hope you can get an appt. with a different neuro. Good thing your primary care dr. was there for you. Can he/she help you with getting in to see a different neuro?

 

[momof3boys]

well for now, were going to check in with a neurologist I had when I was younger. We checked him out today with our insurance he accepts our insurance. he's considered an "in-network" dr, so tomorrow Im going to give his office a call and see if they can help me.

My neurologist I am now seeing and have been seeing for two years now, doesnt have his head wrapped about "common sense".

When I first started seeing him, he did me good by changing me over to Keppra XR from Keppra. I had horriable headaches with Keppra and he wanted to see how I would do on the "XR" version. It worked great for my headaches!

Four months later, I go in for my first VEEG. Prior to having this dr, I began having seizures as an infant and grew up having complex partial and grand mal seizures. But since the age of 17, I was well controlled with two anti seizure medications. My pediatric neuro said if well controlled, it will allow my brain to "mature" if no seizures are there, and over time, it will begin to help in making the seizures less worse.

So when I went in for my VEEG In early 2011, I had seizure activity come up on the eeg, but alot of these seizures were not registering. The more I read, the more I found out alot of these seizures could be too deep in the brain to be picked up by EEGs where the electrodes are placed outside of the skull. My neuro kept me on Keppra XR, took me off of Carbatrol. It took me a good month to get use to that medication alone til I got a good control again and went seizure free. But in the meantime, my neuro was convinced what he saw me having that didnt show up on the EEG were Non epileptic seizures. He referred me to a psych dr, who i saw, and she evaluated me and said if those were true non epileptic seizures, any anti seizure medication WILL NOT stop them from coming. I havnt had one since the EEG. So that there pointed to them being epileptic seizures that just wasnt able to be picked up.

From that point on, almost 1.5 years later, I do awesome on not having seizures. well controlled with name brand Keppra XR. Then comes my appointment this year, at the end of August. It was a routine yearly visit. He said he wanted to continue to keep me on Keppra XR since it was working so well. But when the faxed over my prescription to the pharmacy, they filled it with generic. I thought id might as well give it shot. Who knows... it make work just as well and be cheaper too! In the meantime, I had a couple of months left of the name brand and didnt want that to go to waste, so I waited til I had a couple of weeks left, if anything should go wrong, I had some name brand on hand that I knew would work.

November 15th comes.. i start the generic. I feel ok through out the days. There are times where I get this "slow motion" feeling. It comes and goes. Prior to this, ive had times where if I try a new medication, or go without medication, like I did once when I was little... I went for about a two week time period feeling ok, and bam... just like that I start having seizures. There was one time when i was little that they didnt know if they were going to get the seizures to stop. Luckly they did. But I kept telling myself to get past the first two weeks... then on the night of the 14th night... I went into a cluster of seizures. I knew it wasnt going to work from that point on. I contacted my neuro's office over the weekend, leaving them a message, asking about being switched to the name brand keppra xr. which they did send a new prescription over for, but in the meantime, Im clearly seeing my neurologist thinking these seizures that have occured are not from being switched to the generic, but from "anxiety".... which I dont see why the hell he would say that when Ive never had anxiety and never have taken any medication for it, or been treated for it.

How he can assume this without having any proof of this is beyond me. All I know is that the dr who he was with prior, is just the same when it comes to things like this. It truely irritates me and leaves me feeling like this dr could care less about anyone. Im sick of feeling like I have to defend myself. He's covered his butt by trying to tell me Lamictal last year was used for my seizures, when he finally admited the day I was told I was having an allergic reaction to it, was when he said I dont have epileptic seizures, but anxiety attacks! Just keeping that from me and not being honest with me, is something Im not going to go for no longer.

 

[LJ-Bain]

Man. You sure are being given the runaround. I'm sorry for your breakthrough seizures and I'm sorry that they are accusing you of having anxiety. You'd think they would be able to see that it is a change in your rx and not jump to conclusions.

 

[momof3boys]

Yeah but the way this "office" works... its not a suprise that they think this. Especially after all of the crap Ive had to deal with last year with them. They think if any seizures dont show up on a regular EEG, they automatically say they are Non Epileptic seizures. Then when a change does come about, for example in my case, changing to a generic, they still see the seizures as non epileptic and say they are anxiety attacks. Figures though. I just want to be done with them.

 

[MuayThaiFighter]

Well I live in this town with this doctor, so I know EXACTLY how they are here. If you really want to get pissed. Ask for your medical records, state you want your diagnosis. It will most likely be a "conversion disorder" if they believe it is anxiety disorder. Nothing wrong with having that diagnosis, but the keppra xr has stopped the seizures in the past, so it is epileptic...what am I missing here. I have to wonder if this dude is dipping into the trial med jar! Seriously, this is unreal. If he felt these weren't epileptic he wouldnt even tell you what to do. So what are these jokers being paid for?

 

[momof3boys]

Im calling right now to request I get a release form for my records. Im just so done with this office. If they want to start diagnosing their patients with anxiety, but still treat them with anti seizure medications, so be it. They can do this crap to others, but they sure the hell are not going to do this to me! I'll let you know what they say when I ask for the release paper

 

[pita300]

wow I'm just flored! IMO its the insurance company. Let face it most of us are having difficult times with the doctors calling what are issues really are Seizures! There I said it why is it so difficult for the doctors come out and say it. Why is it always blame it on Anxiety or they were tramatized in there child hood. Its all crap. My first neurologist said I should never take the generic form of any seizure drug as the name brand is the purest form of the drug. 30 years later I totally believe that now! But I think its the insurance companies pushing the doctors to cut health care cost. I'm impressed that the insurance companies are still paying for the name brands! Ok now off my soap box. Kristin i'm sorry this is happening to you and wish you luck with the new doctor

 

[momof3boys]

Thanks Pita!

I have yet to hear from the insurance company... last time I heard from them, they had 2 orders on hand, one of which is still pending.. im assuming thats the brand name keppra xr. But my dr last year lied to me and said he was going to try me on lamictal for a add online medication to my keppra xr in April 2011. Little did I know, two weeks after starting it, what my neuro thought was a sinus infection, turned out to be a severe allergic reaction to the lamictal. I had to taken off asap. Once my neuro heard about it, he got frustrated and admited to me over the phone that the reason he wanted me on Lamictal was because he thinks I have anxiety issues! Not seizures! then a few weeks later, I see him at a routine appointment, and he increases my keppra xr from 2500mgs to 3000mgs and its been fine since. So why he would say I have anxiety and prescribe a anti seizure medication, is beyond me. The keppra xr name brand worked great! Then comes to trial of the generic keppra xr and it fails. But in response to the seizures occuring after trying the generic, instead of saying its from the generic, he tells me its nothing to do with the generic, its because of anxiety again! Its all BS from this dr.

 

[pita300]

Yeah thats total BS! when Tegretol XR came out in generic the pharmacy automaticlly switched it to the generic. Whith in days I had had 2 auras. Something I had'nt had in 15 years. I took it back th the pharmacy and told him I could not take this. The pharmacist told me its the same thing. No its not! It may start out the same but its full of fillers and other ingredients that makes it cheaper! I still go and pick up my Tegretol and the clerk will ring it up and say 12.00 please. And I'll look at them and say NO! It has to be name brand unless your going to pay for the medical bill from the emergency room visit. Oh no will fix that right now and document your record. They still try to pass it off on me from time to time

 

[Autumn Breeze]

you guys might want to google what's happened recently with Wellbutrin XL..the generic was never even tested by the FDA.... perhaps that's a problem we're running into.

The FDA is so broken.

 

[Janus]

Charging bird you are so right. I heard about the fiasco with wellbutrin it is scary and the FDA is NOT our friend. Best luck to all. -D