Topamax - Should I Be Monitered?

[davidmc]

I am currently on Topamax but nobody is monitering me or doing any blood tests or anything. Shouldn't somebody be monitering me while I'm on these and if so, who should be doing the monitering?

 

[Nakamova]

Hi davidmc --

If you are otherwise healthy, and your seizures are controlled, there is no particular reason to have any blood tests done with Topomax. If you have kidney issues, or suspect that you are over- or under-medicated, then that might be a reason to have blood test. If you aren't sure, go ahead and call your neurologist to see if he/she feels that periodic blood tests might be helpful. Usually, the neurologist will have you meet with them or with their epilepsy nurse once or twice a year, and if there are any concerns, a lab test can be scheduled then.

 

[davidmc]

Hi davidmc --

If you are otherwise healthy, and your seizures are controlled, there is no particular reason to have any blood tests done with Topomax. If you have kidney issues, or suspect that you are over- or under-medicated, then that might be a reason to have blood test. If you aren't sure, go ahead and call your neurologist to see if he/she feels that periodic blood tests might be helpful. Usually, the neurologist will have you meet with them or with their epilepsy nurse once or twice a year, and if there are any concerns, a lab test can be scheduled then.

Thanks. I don't currently have a neurologist as they keep discharging me and saying they aren't seizures and not arranging tests they promised. I am still waiting for an appointment with a neurologist in Liverpool that my GP has refered me to.
I don't have any epilepsy nurses or specialists either.

My GP wouldn't prescribe me any anti-seizure meds without the neurologists say so. I read that Topamax can be prescribed for headaches, and as he knows I do get headaches, after prescribing two other painkillers that didn't work, I asked if I could have Topamax. He advised me against it but said I could try it if I wanted to (I wanted it for the seizures really).
I was getting hardly any sleep and countless partial seizures most days, which had increased, so I asked him to prescribe it and he did.

I don't know if he should have prescibed them, but I couldn't cope with all the seizures anymore. I'm not getting them anymore or the headaches and my sleep is somehow better (not waking up during the night all the time now) and people have noticed changes in my memory - for the better. The only bad side effect is the leg pain but I can cope with that.

 

[Endless]

My neurologist monitored me on Topamax. He wanted to watch my blood levels on different dosages while I ramped up and while we fiddled around to get the right dosage. He also wanted to watch my blood gasses to make sure they stayed okay (make sure the acid/base balance was right). He also wanted to make sure there was no effect on my kidneys or liver. Three of the side effects of Topamax are metabolic acidosis (blood or tissue too acidic), and liver or kidney damage.

He tested me at 1 month, 3 months, etc. with the intention of testing until I got up to a full effective dosage, then every 6mo to a year after that. He also already had a baseline on my liver and kidney functions because I had tried other drugs before Topamax.

He may be overcautious, but I prefer to think of it as thorough. I feel really safe with my doctor.

 

[Nakamova]

How frustrating that you had to use the excuse of "headaches" in order to get the anti-seizure meds you need. But it's great to hear that the Topomax is helping despite the skepticism of the doctors.

 

[davidmc]

My neurologist monitored me on Topamax. He wanted to watch my blood levels on different dosages while I ramped up and while we fiddled around to get the right dosage. He also wanted to watch my blood gasses to make sure they stayed okay (make sure the acid/base balance was right). He also wanted to make sure there was no effect on my kidneys or liver. Three of the side effects of Topamax are metabolic acidosis (blood or tissue too acidic), and liver or kidney damage.

He tested me at 1 month, 3 months, etc. with the intention of testing until I got up to a full effective dosage, then every 6mo to a year after that. He also already had a baseline on my liver and kidney functions because I had tried other drugs before Topamax.

He may be overcautious, but I prefer to think of it as thorough. I feel really safe with my doctor.

Thanks. I will make an appointment as I need to see him about other things, but he isn't the smartest doctor. To help me sleep, he prescribed laxatives! Luckily I read up about them first.

How frustrating that you had to use the excuse of "headaches" in order to get the anti-seizure meds you need. But it's great to hear that the Topomax is helping despite the skepticism of the doctors.

I do get actually headaches, but painkillers have never worked. I did get the first two painkillers prescribed knowing they wouldn't work though in order to eventually get the Topamax as I couldn't just ask for it straight out as he would have known what I wanted it for. He realises now what I really wanted it for but he's continuing prescribing it for "headaches". I didn't actually think it would help my headaches but it has.
Personally, I would have liked to try something else like Tegretol maybe but Topamax was the only one I can get until I see a decent neurologist.

 

[Endless]

LAXATIVES?! Well, I guess that would relieve the pressure in your brain, lol....

Good thing you double-checked his work. What on earth did his office say when you called about that?

 

[davidmc]

LAXATIVES?! Well, I guess that would relieve the pressure in your brain, lol....

Good thing you double-checked his work. What on earth did his office say when you called about that?

I called to request a telephone appointment to discuss it with him. He lied and said it was because the painkillllers can cause constipation. But that is not what he said when he prescribed them, he said they will help me sleep.

I would change doctors but now I've got a successful treatment for the seizues, I'm worried they will take me off the Topamax.

 

[Endless]

Huh. A morphine-based painkiller can cause constipation, like tramadol, morphine, vicodin, oxycontin, or demerol. Maybe he just forgot to phone in the painkiller part. Or the prescription was lost in the shuffle. No way to tell, really. The painkillers would have helped you sleep - they'd knock you out.

He's right on the constipation part. If you are on any of those on a regular basis pop one of those laxatives that promises to be "gentle," or take a double-dose of psyllium seed every day like metamusil to keep things moving, so to speak.

Well, Topamax isn't the happiest drug in the world. I can understand why you want something else. Lots of people get relief from seizures and headaches on it, with few or no side effects. Lots of other people struggle on it. It's a very common medication used to prevent headaches but it comes with baggage for most folks.

Hang in there. Hope you find a new doc soon. Or at least find a place of better communication with the one you have now.

 

[davidmc]

Huh. A morphine-based painkiller can cause constipation, like tramadol, morphine, vicodin, oxycontin, or demerol. Maybe he just forgot to phone in the painkiller part. Or the prescription was lost in the shuffle. No way to tell, really. The painkillers would have helped you sleep - they'd knock you out.

He's right on the constipation part. If you are on any of those on a regular basis pop one of those laxatives that promises to be "gentle," or take a double-dose of psyllium seed every day like metamusil to keep things moving, so to speak.

Well, Topamax isn't the happiest drug in the world. I can understand why you want something else. Lots of people get relief from seizures and headaches on it, with few or no side effects. Lots of other people struggle on it. It's a very common medication used to prevent headaches but it comes with baggage for most folks.

Hang in there. Hope you find a new doc soon. Or at least find a place of better communication with the one you have now.

The painkillers were for the headaches. But he said he would prescribe the laxative, can't remember the name, it began with b as it would help me sleep. My sister was with me at the time, he did say the laxatives were to help me sleep. He has also prescribed other things for patients that are wrong, people have been compalining about him in the waiting room, one lady even asks at the chemist before getting her prescription if he has prescribed the right thing as he hasn't in the past. lol

I would prefer not to have the leg pain as I love cycling, but at least with the Topomax I can cycle again, so will just put up with it. And it's probably not the worst side effect to have. I feel as if I've got my life back. lol

 

[KARDSHARQUE]

You should be monitored on all new meds if you ask me. Keep note and read the side affects of all your meds so you know what to watch for.