Can too low dose cause seizures to return?

[davidmc]

As some may know, I was only allowed Topamax for my headaches and not the simple partial seizures due to normal EEG tests "unlikely to be e" blah blah. So I was told not to go above 100mg a day.
It did control my seizures although I still had a lot of the auras and the odd seizure, but the latter was pretty rare.
But now I am getting more seizures, it's back to how it was when I was unmedicated. There was a problem with generic being mistakenly prescribed. However, that was sorted out and I thought they would have gone by now but they are just as bad. In act, on Thursday night, I had the longest sp I've ever had in the over 13 years of getting them.

I realise I am on a low dose to control seizures, as I said it was only allowed for the headaches, could this be why?

Can a too low dose cause seizures to return eventually?

I so, what do I do? None of the so-called specialists are any use. If this doesn't work soon, the neurologists suggestion was to go on some other AED - at a low dose, and stay at a low dose - for the headaches!

 

[Ann T.]

Hi, DavidMC: While this may not be true of your brain & body, in my brain, anti-epilepsy medicines tend to plateau & lose their effectiveness. But, please do NOT adjust the amount of Topamax you are currently taking on your own.

And, I learned this myself yesterday @ my neuro appointment: the company that makes the Topamax you take may have changed the fillers it uses with the active ingredient, which is the Topiramate. Finally, if you know the name of the company that makes the Topamax that controls your seizures the best, just request your pharmacist re-fill your Topamax using only that company. These are my suggestions. Take care & I hope everything works out for you, David.

 

[valeriedl]

I know when the drs were trying to figure out what meds and dosages to put me on they would sometimes lower a dosage of one of them. Sometimes I would start to have more seizures, or worse ones that I had when I was on the origional dosage.

I would tell my nerou at my next appointment, or even call if my appointment was a good bit away. Sometimes he would change the dosage to see if it would help.

As AnnT said, don't mess around with the dosage all by your self, it could make things worse. Talk to your dr before you do anything.

 

[davidmc]

Hi, DavidMC: While this may not be true of your brain & body, in my brain, anti-epilepsy medicines tend to plateau & lose their effectiveness. But, please do NOT adjust the amount of Topamax you are currently taking on your own.

And, I learned this myself yesterday @ my neuro appointment: the company that makes the Topamax you take may have changed the fillers it uses with the active ingredient, which is the Topiramate. Finally, if you know the name of the company that makes the Topamax that controls your seizures the best, just request your pharmacist re-fill your Topamax using only that company. These are my suggestions. Take care & I hope everything works out for you, David.

I know when the drs were trying to figure out what meds and dosages to put me on they would sometimes lower a dosage of one of them. Sometimes I would start to have more seizures, or worse ones that I had when I was on the origional dosage.

I would tell my nerou at my next appointment, or even call if my appointment was a good bit away. Sometimes he would change the dosage to see if it would help.

As AnnT said, don't mess around with the dosage all by your self, it could make things worse. Talk to your dr before you do anything.

Thanks. I'm not planning on changing the dose myself.
My neurologists secretary is on holiday - can only contact him through his secretary - but he is currently aware of the problems. I was only allowed the Topamax due to the headaches. So I am not on it for my seizures, they wouldn't allow that due to normal EEG results. I'm on a low dosage soley because I was only allowed it or the headaches and they will not let me go above the current dosage.

 

[valeriedl]

If the seizures are so bad that you feel you can't wait for his secretary to get back then be a pain in the butt. You said that your neurologist is aware of the problems so the information is getting to him somehow.

When I have bad problems and don't hear back from my nero I'll call every day, sometimes twice a day, untill they get sick of me calling. Someone will finally call me back and tell me what I can do to help with the problem that I'm having.

 

[davidmc]

If the seizures are so bad that you feel you can't wait for his secretary to get back then be a pain in the butt. You said that your neurologist is aware of the problems so the information is getting to him somehow.

When I have bad problems and don't hear back from my nero I'll call every day, sometimes twice a day, untill they get sick of me calling. Someone will finally call me back and tell me what I can do to help with the problem that I'm having.

I never get a call back, they always say they will but never do. Last time his secretary said she would then said she didn't say that when I called back.

 

[valeriedl]

Keep calling.

I needed some paper work filled out faxed to me once. All it just needed a few things filled out, pretty much the date of my last appt, if I was still having seizures and the dr's signature on it. I know the dr's are busy but come that would take less than 5 minutes to do! After a few days of calling every day, sometimes twice a day, I started calling every hour. After about 5 calls in one day I finally got the paper work.

 

[Wobblez]

Haha, he who shouts loudest...

 

[valeriedl]

I think I did!!!

After being transfered to his secretary and either her saying that he'd get the paper work done or just getting her voice mail I started telling the receptionsit, and telling her I didn't want transfered either, that I needed the paperwork. I think she's the one who got sick of me calling every hour and went and had the stuff filled out.

 

[momof3boys]

Does your dr's office have a oncall service? I know when I was being changed on medications last year, I had some seizures that were coming up, I got to talk to the dr who was on call that day. It helped out alot since I didnt have to wait the following day to get ahold of the office.

 

[valeriedl]

He has a nurse practioner who I was usually able to see if I needed for something that couldn't wait till my next appointment. I don't know if she's there every day but I was usually able to talk or see her within a reasonable amount of time.

He's also at a teaching hospital so I don't know if the students work with him or not. I've had other people call me that weren't his nurse practioner and give me advice on what to do but I never get a visit with them.

 

[davidmc]

I saw the genetics counseller today.
She explained my genetic condition, which bands were missing and said it was probably the cause of my seizures.
I asked about EEGs and she said it wouldn't always show up on an EEG test so she is writing to both neurologists to explain the genetic condition and this fact as I told her the problems I'd had problems even getting medication in the first place due to normal EEG results, if it wasn't for the fact I get headaches, I never would have been able to get any medication.

 

[Nakamova]

That all sounds very promising david. I hope the neurologists eat humble pie and apologize to you.

 

[davidmc]

That all sounds very promising david. I hope the neurologists eat humble pie and apologize to you.

Doubt they will, Salford Royal lied when they lost my details and tried to make me look like an idiot instead of just admitting it, they still deny it now. Liverpool diagnosed me with non epileptic attack disorder at first based on his prejudges.

At least I'm getting somewhere now though.