Heard Back from my Neuro....

[momof3boys]

Well the neuro office called today. They left a message, saying my neuro thinks my Keppra level is too low, and wants me to add (1) 750mg tablet to my dose a day. Making it go from 3000mgs (which I take (2) 750mg tablets in the morning, and again at night) to 3750mgs a day... (taking (2) tablets in the morning, and (3) at night.

But my concerns are these...

Back in September 2010... I was seeing a different dr.. actually it was my neuro's partner at the time... he took me from taking regular keppra... not keppra xr... from 3000mgs a day to 4000mgs a day. During that time, I felt like a complete zombie, and had alot of break through seizures. Now I know Keppra XR is different from Regular Keppra. But I want to make sure they do know this occured with the regular Keppra, and I would also like to have them check my keppra level prior to taking that extra keppra tablet a day. How does he know for sure that my keppra level is low? I havnt had any blood drawn at all since either 2009/2010. Thats a long time in my opinion to go without getting any labs done. So before I take that extra pill, I want to see if they can fax over a lab order to our quest diagnostic center here to check my level. I did call and leave a message about this, and told them I want this level checked before I start taking that extra pill. Plus I voiced my concerns about it, and wanted to ask them if this was going to be the same as the regular keppra, since i had a huge problem with the keppra at 4000mgs.

Anyways, til I hear from her tomorrow... praying to god I do... I am going to hold off on taking that extra keppra tablet. I wish I could, just to feel better... But then i know if I do take one tonight, and they do say its ok to get my level checked. its going to mess with my level then after taking it.

I feel like Im the dr... being the "concerned" one... and this neuro of mine is just a guy telling me what to do... not having any concerns of his own, and questioning where my level is at? Why not check it? I dont see any harm in that at this point? Especially after at least 3 years have gone by since Ive had any blood drawn!

 

[jyearta]

I don't blame you, I wouldn't want to add the extra tablet until levels checked.

Have any of your Dr. ever checked Keppra levels?

 

[momof3boys]

The last time I recall getting my levels drawn was either in 2008 or 2009. That was when I believe I had my last MRI and EEG done too. I was with my "now" neuro's Partner... it was him who did those tests... and I last saw that neuro in September 2010, when he thought my really had headaches was seizure activity, and increased my keppra to 4000mgs. Next thing I knew, I felt like a zombie, no energy, tired all the time, and then the seizures started up. Felt horriable! I had to take myself back down to 3000mgs and when I returned to his office, that neuro was gone, and I was put with his partner, who I am now seeing. Once I started seeing My Neuro I see now... he switched me from regular keppra to Keppra XR. Still at 3000mgs a day, which actually took the headaches away! He explained that the regular keppra has a "roller coaster" affect with the levels... once you take it, your level goes up, and then comes back down again, til you retake your next dose. Which in that time period I was getting very bad headaches. So, he switched me to the Keppra XR. Which took that "roller coaster" affect away and the XR lasted longer, which didnt give me the headaches.

One thing I do recall though, is when that first neuro put me from 3000mgs of regular keppra to 4000mgs, I was also on Carbatrol, taking 1200mgs of that too! So this time, would be different. Ive been off the Carbatrol since having my VEEG, In March 2011. So maybe the increase in Keppra wont affect me the way it did then, since I was on two anti seizure medications, and this time im only on one?

But before trying the increase, I want to make sure I get my levels checked. I think its strange to go at least 3, possibly 4 years without having any levels checked? I remember growing up, seeing a great pedatrition Neuro who checked my level every year. So I find it odd that my neuro would go this long without considering checking things. Especially after he took me off one anti seizure medication, almost two years ago! You would think he's be curious as to where things stood?

 

[jemsister]

That's how my new neuro has been, so I'm not going back. He hasn't ordered any levels, and he didn't even want a sodium level until I brought it up. His reply was, "Oh yeah, that would probably be a good idea." Umm, who's the pro here? So I'm going back to my old neuro. She was always really good about checking my levels before adjusting meds. She's the only doc I've been to who is diligent about it, and she is the only doc who seems to realize that it's not about dosages, it's about blood levels. If I'm taking an amount that is in the normal range but not absorbing very well, then I'm going to need to take more. And I have ended up in a toxic range before when my meds were raised while levels weren't being checked. I was drugged out, and having breakthroughs because I was taking too much. It seems careless to me to raise a dose without checking levels first. After my experience, I definitely see the folly of it.

I think some neuros just don't specialize in epilepsy as much as they should, so they miss some of the finer points of treating the patient. I got lucky with my neuro, but all the rest of them just wanted to play guessing games with the meds. =/ My new epileptologist will hopefully be more diligent as well--I imagine he will, since he is an epilepsy specialist.

 

[huskymom]

I have to agree with everyone here. I would hold off until I had my levels checked. I can't believe that it has been so long since they have been! I get mine checked every time I go. That may be over kill, but I prefer that to not having them checked! Let us know what you find out!

 

[KarenB]

I seem to remember that with Keppra, the docs don't usually order blood levels drawn (to see if at therapeutic dose), because there really isn't an established therapeutic dose for Keppra. The way I understand that it works is that the dose keeps getting increased until it stops the seizures or until the side effects get too bad. Also, Keppra isn't so hard on the body (i.e. liver or kidneys) like most of the other drugs, so there usually isn't a need to check things like liver enzymes and electrolytes. The dose can go fairly high as long as the patient can tolerate the side effects (most of the side effects tend to be mood oriented, or, as you mention, tiredness).

(Our son just weaned off of Keppra last week -- we gave it a whirl for a few months, and it didn't seem to be helping, but he was getting extremely aggressive).

However, if you haven't had any blood work done in several years, you should probably have a basic CBC and maybe a couple other labs run -- not to check the drug level so much as just to make sure there's nothing else wierd going on that could lower your seizure threshhold.

 

[Cint]

I agree with Karen about Keppra. I've been on Keppra now for 10 years and am up to 3000 mgs. I've never had my blood levels drawn concerning Keppra. Have had a CBC to check out other things. But, Kristin, if you cannot tolerate this dosage, still let the dr. know.

 

[momof3boys]

I got an update...

I about feel off the chair when I was told this...

The drs nurse calls me back. She said she wanted to "clarify" her message. When she stated Dr Madhaven thinks my keppra level is on the low side, and to add a keppra xr tablet to my daily dose, she said that was only a " 1 time" thing! Not a continuously thing! So, why the hell would I take one extra pill, just one time... and have that take all the seizure stuff away? She never responded back. I asked what about my level? Since I started seeing this dr, back in November 2010, at that time I was on Carbatrol and Keppra, and he didnt order any levels for me then. 4 months later, was my first VEEG, and when I was released, I was sent home with only being told to take the Keppra. Not the carbatrol. OK. Why not check my levels if there was a medication change there? He's never checked anything before. My last known blood level was in 2008/2009. At that time I was on Carbatrol and Keppra. I basicly went for a good two years at least still being on those two medications, with no levels checked.

She said she was going to check with him on seeing if he wants my levels checked. then get back to me.

I never did take the extra keppra xr tablet, because the way she put it in the message, was not clear at all. She doesnt say to just take one extra pill just one time and call it good. THe way I took it was that I was to start taking a extra tablet with my daily dose, meant to start taking it like that all the time.

Im going to give her today to see if she gets back to me on my level. If she doesnt, then Im going to my primary care dr to ask if they can check my levels.

 

[Cint]

If she doesnt, then Im going to my primary care dr to ask if they can check my levels.

That would probably be the way to go, anyway..... this neuro & office needs to get their heads on straight....

 

[momof3boys]

That would probably be the way to go, anyway..... this neuro & office needs to get their heads on straight....

I couldnt agree more with you that. I dont see how in the world they can go about with their patients like they are. My mom is very frustrated just by the fact they said they would have to run this by the dr, yet the whole time we've been seeing this dr, he's never checked my levels. He's guessing my keppra level is low.

 

[momof3boys]

Just got a call back from the neuro office...

the nurse called to say she ran it by the doc if he was ok with checking my keppra level. He said, "If it makes her feel more comfortable with getting it checked, I can let her get it checked".

Really?

I swear, this guy is just thinking this shit is all in my head, and is going to let me get my levels checked because its what makes me feel comfortable. He doesnt need them checked, but its up to me.

BUt I do want to know where my level is. So, I gave the fax information to the nurse for her to send over the lab order.

I called the lab place... they have NOTHING thats been sent to them.

In the meantime, Ive asked the nurse about the extra keppra tablet.

Ive been having auras through out the day and its really getting to me. God only knows why the seizures and auras started since 1/21. But something is going on. She said thats why the dr wanted me to take the extra keppra tablet, to see if it would help! But just to take one tablet and go back to my normal dose?

What happens if I take that extra tablet, and the auras and seizures go away? Then I return to my normal dose, and it comes back?

She said then I would have to call them to let them know. But my dr is assuming since my keppra level is low... and he's just assuming this since he doesnt have any lab orders saying its low.. he thinks my me taking the extra keppra tablet its going to solve everything. RIGHT. I dont know what the hell to think with this guy anymore!

 

[CQ:)]

Hi Kristin,
I can only imagine the frustration you are going through at the moment with your neurologist & his nurse.

I can't see how just taking 1 extra doses of your Keppra is going to do anything. The way I see it is that if you have to increase your medication dosage , you often need to stay on that extra dosage for more than 1 day before it takes effect.

his neuro & office needs to get their heads on straight....

:agree:
Does your neuro want you to go into a full blown tonic clonic seizure before he starts to take you seriously. I know you mentioned before you were going to look around for another neuro but I think you said there weren't many other neuros available. I do hope you are able to find a better neuro who will take you & your epilepsy seriously & not mess you around so much.

Good luck with your blood tests, lets hope that your neuro actually bothers to let you know the results.

 

[momof3boys]

Hi Kristin,
I can only imagine the frustration you are going through at the moment with your neurologist & his nurse.

I can't see how just taking 1 extra doses of your Keppra is going to do anything. The way I see it is that if you have to increase your medication dosage , you often need to stay on that extra dosage for more than 1 day before it takes effect.


:agree:
Does your neuro want you to go into a full blown tonic clonic seizure before he starts to take you seriously. I know you mentioned before you were going to look around for another neuro but I think you said there weren't many other neuros available. I do hope you are able to find a better neuro who will take you & your epilepsy seriously & not mess you around so much.

Good luck with your blood tests, lets hope that your neuro actually bothers to let you know the results.

I see it the same way. How is taking one extra keppra tablet going to solve these issues? The nurse's response was that if it doesnt, and they came back, to call back again. (ROLLING MY EYES HERE)

I just dont get this office.

Its tough finding a new neuro in our area. In Lincoln, there are neuros that take office calls, the typical stuff you see. But as far as testing, EEG,s MRIs, etc. thats when we have to go to Omaha, Ne where the big hospitals are at that have that testing available. When I was seeing a neuro here in town, he wanted all the tests to be performed, and recommend I go to a neuro in Omaha. Thats why we went there, and here we are today.

If they offered the good neuros who have the testing available here in town, I would have changed neuro's a long time ago! I told my mom I wish I could just stop going to this guy. But then like she says, if I do stop, I need to make sure I find a good neuro before that to make sure I have a neuro.

As for the lab work, that the nurse said she was going to fax over almost two hours ago... the lab still hasnt recieved anything. Great. I know Im not going to take that extra keppra tablet and have that interfer with the lab work though. I want to take it to see if it affects anything, but Im not stupid, and would take the keppra tablet before getting my level checked!

 

[Nakamova]

Your neuro must think that keppra is like aspirin -- just pop an extra one from time to time to make the seizures go away. Sheesh!

Ask him to pop an extra pill to see if it helps make him smarter. if it doesn't work he should keep increasing the dose until he comes to his senses...

 

[KarenB]

It sounds like perhaps the nurse isn't communicating very well.

As I mentioned before -- there isn't an established therapeutic level for Keppra. You doctor is probably thinking your med levels are "low" because apparently the level you're currently on isn't stopping all the symptoms. That same level may be adequate for some people but not others. With most seizure drugs, there's a sort of cut-off point -- if you go any higher on the dosage, you get into toxic levels. But Keppra is easier on the body (though certianly not on the emotions) -- so sometimes doctors will just keep raising the dose until they see some result (unless the side effects start getting unbearable).

I do think it a bit odd that you would be asked to take just one extra tablet just one time to see if it would help. Most meds do take time to build up, but perhaps Keppra (if it works --which is hasn't done for us) is a bit different. I do know that Keppra is in the same family as Piracetam, and some people will pop that pill as a one-time or random thing to do better on an exam or something (it enhances cognitive function).

 

[momof3boys]

Your neuro must think that keppra is like aspirin -- just pop an extra one from time to time to make the seizures go away. Sheesh!

Ask him to pop an extra pill to see if it helps make him smarter. if it doesn't work he should keep increasing the dose until he comes to his senses...

:roflmao: You're right there! I couldnt agree with you more!

I had to call the office back again this morning... had another seizure at 5am. I even took the extra keppra tablet at 3pm yesterday, and took my normal dose at 8pm...but Im still waking up to seizures. onder: I got a call back around half an hour ago, and the nurse said she would check it over with the dr about the seizure this morning. Day 10 and its still going on. Im just so sick of it.

 

[jemsister]

Man, WTF is wrong with this guy! He sounds lazy.

 

[Dignan]

I know its not easy to do where you live, but sounds like you need to find a new doc. Throwing more drugs at the issue sounds like a kneejerk decision that any 6 year old could make. That said, he doesn't sound like he is the type of doc that will really look into your recent outbreak of auras.

Also, as was mentioned by another post, I was always told that Keppra isn't tested for blood levels. I've taken it for a few years and they never tested my levels. So, it is really condescending for a doc to not test levels, then come back and say "give her a test if it makes her feel better.." So, he is taking the path of least resistance and saying give her an extra pill. Why don't they understand that we not only want the seizures to stop, but we'd like to know what has changed, or what the hell is going on?!

My guess is that if the extra Keppra doesn't work, he'll suggest you take another drug along with it and then go home thinking he did his job.

These docs really piss me off!

 

[arnie]

I don't know. I think that taking one extra pill one time sounds totally logical! I decided I wanted to get stronger and lose a little weight, so I did ten pushups one day and ate one less cookie for one day. Won't that give me the results I'm looking for?????

How bizarre. We all know that a dosage increase or decrease takes a little time to take effect. That's what titration is all about!

Good luck to you! Keep us posted!

 

[momof3boys]

Thats exacly what i was thinking yesterday when she phoned to say they only meant to take "1" extra pill! OK??

I still have yet to hear back from their office today.....