Several questions...

[watershedhead]

I started having migraines in 2007. My younger sister had just been diagnosed with epilepsy and my mother is convinced that migraines and epilepsy are very closely related, so she suggested I see a neurologist. I was put on "Dopamax" and was on it for quite a while. The side effects were nasty but it worked for the migraines. While I was on Topamax, I began having complex partial seizures with olfactory hallucinations (cinnamon, cigarette smoke, and the most awful burning smell). The neurologist I saw was an absolute joke. He became infamous in my city and has moved his practice (STAY AWAY from Dr. Jeffery Harris in San Antonio!) and I began to see a different one. He took me off Topamax and put me on Keppra instead. He also told me that I shouldn't be driving, but that if the EEG came back normal and the Keppra controlled them then I should be okay. While I was in the process of switching meds, I had a grand mal. (I chalked this one up to the med switch). Once I was just taking the Keppra, I developed a couple of sores on my tongue, almost like an inflamed taste bud, but painful to eat and slightly painful to talk. I called the nurse, and she sounded like she had never heard of this. She told me to flat-out stop taking the Keppra, which sounded like bad advice to me. I like to be aware and have a general idea of what I'm talking about, so I looked up whether mouth sores were a side effect of Keppra, since I had never had any before. I found a study done that found that of patients who reported mouth sores after starting Keppra, most were females under 27 who had been taking it for less than 2 months (that's me all across the board). So I figured that it was normal. Then, I got a call from the nurse and she told me that my EEG results showed seizure activity and that I should continue to take the Keppra as described. Apparently, she didn't even know that I had been told to stop taking it (I did not stop taking it, for the record.) So right now, I am still taking the Keppra and have probably 1 grand mal every 1-2 months and 3-4 complex partials every month.

So, I'm so sorry that it's such a long story, but I have a few questions.

1) Has anyone else experienced those kind of "tongue sores" while taking Keppra? Honestly, they're kind of annoying but nothing major. I have put up with much worse.

2) Should the nurse have written down in my chartthat she had told me to stop taking the Keppra? That seems like something that should be communicated for future reference.

3) Is that number of seizures (1 grand mal every 1-3 months and 2-3 complex partials every month) considered "controlled"?

4) Even though the doctor saw my EEG results and said there was "seizure activity", he did not mention my driver's license again. I just feel like there have been a couple of things that should have been documented (this and question #2) in my chart. I do not feel like, if I walked into his office right now, that he would recognize me as one of his patients. Is this normal? I know they see a high volume of patients. I guess I was just expecting to get a little bit more "personal" care.

If you read through all of this, you're fantastic. Thank you in advance!

 

[Nakamova]

Hi watershedhead, welcome to CWE!

In answer to your questions:

1. Not me, but we have plenty of members with keppra experience who can weigh in.

2. Yes the nurse should have made a note in your records. It's not unusual for there to be poor record-keeping and miscommunication (not just in the healthcare industry). In addition, many doctors and nurses and other healthcare providers are not well-informed about medications, side effects, seizures types, etc. I've been given conflicting med advice from a nurse vs. my neurologist vs an ER doc.

3. Controlled means....controlled. Your seizures aren't controlled, or perhaps could be considered "partially-controlled." Generally, controlled means no seizures whatsoever. I suppose you could argue that "controlled" could also mean no seizures where you lose consciousness. But that's not happening in your case. (You may want to have your medications/dosages reviewed with an eye toward achieving better seizure control).

4. There are some great neurologists out there. And some great doctors offices and hospitals. Unfortunately they seem to be in short supply, based on the average experience of CWE members. It would be great to get "personal" care, but health insurance isn't designed that way. I've found it's important to take notes during and after any appointments, ask for a record or copy of what's transpired, and follow up to ask again when those records don't show up. If you have questions about your records, bring them up at your next appointment. In regards to your driver's license, the rules vary from state to state. Here in Massachusetts, the neurologist isn't obligated to tell the DMV that you've had a seizure, so it's up to the patient to self-report, or self-police in that regard.

Hope this helps!

Best,
Nakamova

 

[valeriedl]

Hi watershed, I wanted to answer some of your questions for you as best as I can...

1.) As Nakamova said alot of people devlope mouth sores, however I have never gotten them

2.) Yes the nurse should have documented that she had told you to stop taking the meds. If something were serious to happen to you and the neuro saw that you weren't taking that med any more it would have probably been considered your fault as to why you are having that many seizures

3.) On average I'll have about 2 or more complex particals a month and 1 grand mal a year, sometimes more or sometimes less though. I think if you can name the type of seizure I have it and I know I have those along the way too. Your seizures aren't considered controlled as Nakamova said.

4.) I don't know if you're still driving or not but I'd stop for awhile. I'm not sure if you're like me, but I don't know when the seizure is coming on, it just does. You could have some seirous accidents if you were to have a seizure while driving.
And yes your dr should be friendly with you AND know who you are. Yes they do see lots of paitents but that makes no difference as to how he is acting with you. My neurologist if very firendly and takes time to listen to what I have to say. I always call his office to let them know that I've had a seizure. 9 times out of 10 it is him that returns the call and asks me questions about it and make any suggestions about things that he feels would help. I would look for a new dr.

Don't worry people will take time to read your post and try to answer your questions for you. I found this board about a month ago and I love it. My neuro called today and while I was talking to him I brought up this board. He told me it sounds like a wonderful place, espically when you find out there are people that are dealing with the same problems that you are so you know you aren't alone out there!

 

[momof3boys]

1) Has anyone else experienced those kind of "tongue sores" while taking Keppra? Honestly, they're kind of annoying but nothing major. I have put up with much worse.

Well, Ive been on Keppra for over 12 years now and havnt experienced any tongue sores.

2) Should the nurse have written down in my chartthat she had told me to stop taking the Keppra? That seems like something that should be communicated for future reference.

Yes, I would think that she should have wrote down anything she told you to do regarding medications doses, etc.

3) Is that number of seizures (1 grand mal every 1-3 months and 2-3 complex partials every month) considered "controlled"?

Well, for me, Ive gone for the past 11 years with pretty good control with seizures taking Carbatrol ER and Keppra. I was taken off the Carbatrol in March once I had my VEEG. Im now just taking Keppra XR. During those 11 years, my last grand mal seizure was in 2000, and then five years later I had a seizure after giving birth to our second son. Ive had seizure activity here and there since being switched to new medications, and back to the Keppra again. For my opinion, if youre seizures are under good control, If I were you, Id talk about that with your dr. If your dr can prescribe you medication that can better control your seizures, thats what I would want.

4) Even though the doctor saw my EEG results and said there was "seizure activity", he did not mention my driver's license again. I just feel like there have been a couple of things that should have been documented (this and question #2) in my chart. I do not feel like, if I walked into his office right now, that he would recognize me as one of his patients. Is this normal? I know they see a high volume of patients. I guess I was just expecting to get a little bit more "personal" care.

As for your drivers license, I know all states do things differently. If your dr hasnt reported anything to the DMV, and youre still having seizures, If I were in your shoes, I wouldnt want to be driving. When I last had my VEEG, my dr said I could be back to driving within 2 weeks! Now i thought that was way too soon. So I went for a couple of months without driving. I had family and friends to help me out. Just thinking about the possibility of having a seizure behind the wheel with going through medication changes, etc scares the crap out of me!

 

[Endless]

1) Has anyone else experienced those kind of "tongue sores" while taking Keppra? Honestly, they're kind of annoying but nothing major. I have put up with much worse.

I didn't. But everyone is different.

2) Should the nurse have written down in my chartthat she had told me to stop taking the Keppra? That seems like something that should be communicated for future reference.

Yes. Yes. Yes. It is dangerous not to do so. Ask for a copy of your chart notes. She may have added it after you left. If it's not in there, ask them to add it.

3) Is that number of seizures (1 grand mal every 1-3 months and 2-3 complex partials every month) considered "controlled"?

I'm not a doctor, but from what I have heard that is not considered controlled. NO seizures is considered controlled. I'm down to one simple or complex partial about every two weeks and it's considered intractible (incurable).

4) Even though the doctor saw my EEG results and said there was "seizure activity", he did not mention my driver's license again. I just feel like there have been a couple of things that should have been documented (this and question #2) in my chart. I do not feel like, if I walked into his office right now, that he would recognize me as one of his patients. Is this normal? I know they see a high volume of patients. I guess I was just expecting to get a little bit more "personal" care.

YOU are responsible for driving or not driving, as your state's law requires. You are responsible whether your doctor mentions it or not. Every state is different. Go here to look up the laws for your state:
http://www.epilepsyfoundation.org/living/wellness/transportation/drivinglaws.cfm?language=EN

If you are in a non-mandated-reporting state odds are your doctor didn't notify the DMV. So you still have your license, you just can't use it. Not notifying the state licensing agency is good, because you won't have to jump through hoops to get your license back. You'll just start using it again. (It can be hard to get it back once it is relinquished). Same with auto insurance. Don't cancel it outright. Either keep it, or reduce it to a parked and not used vehicle kind of coverage. If you give up coverage it can be hard to get it again.

 

[msuder0583]

well the other replies broke them down in a list but im just going to keep it all in the same paragraph. im on both keppra and topamax. i have never experienced mouth sores or sores on my tongue. the only time there would be any form of swelling on my tongue is post tonic-clonic, which i
m sure is because i bit it. and in my experience, having no seizures is controlled. because i know the dmv here in maryland wouldn't allow you to have your license if you were having seizures every 1-2 months. you have to be completely seizure free, or "controlled" for 3 consecutive months. and as far as your nurse's documentation, i think everything that you do (i.e. dosages, increases, decreases,) should be written down so that if you should ever transfer out the new neurologist or whoever will know what's going on