Scared to take my Medication

[summerf]

My dosage of Topamax got high enough that I couldn't function at work anymore so I'm in the process of switching to Zonegran. I have about 2 weeks go to in the switching process. But...I read today in a couple places on the internet that Zonegran has the highest SUDEP rate??? The person that posted it in on the internet in one place wasn't a doctor, and I don't know if the information I saw is even accurate. My own doctor didn't tell give me this information. I don't know what to think - whether the medication causes SUDEP, or whether the people that it happened to might've had it anyway and happened to be taking a particular medication. I'm sure I'll never know the answer, but I guess the first step here is to call my own doctor and ask.

The bottom line is, I'm all of a sudden scared to take my medication, or any other medication. All of a sudden, I feel like I'd just rather have seizures - like, the "cure" might be worse than the problem. I'm sitting here crying like a baby and I don't know what to think.

 

[Fedup]

summerf

That is an awkward question because you need to be totally happy with your doctors choice of medication, that said I do not know of and instance of Zonegran causing Sudden Unexplained Death in Epilepsy. Like you said you first have to ask your doctor and be happy with the answer you receive. Its not surprising you are scared when you see things like that but when taking your medication you have to note everything and anything you think or feel is wrong and if you think it is causing something serious or in the process of it, stop it there and then. We are all scared of new medications we are put on because we do not know how we will react to it, so its a process of take it easy and be careful. But you have first got to talk to your doctor, I never heard of Zonegran causing this and there are some here who take it, so maybe hearing from them would help you more.

 

[Cint]

The bottom line is, I'm all of a sudden scared to take my medication, or any other medication. All of a sudden, I feel like I'd just rather have seizures - like, the "cure" might be worse than the problem. I'm sitting here crying like a baby and I don't know what to think.

Depending on what type of seizures you experience, they can be deadly also, depending on where/when they occur. SUDEP can and has happened to folks who have taken different meds, not specifically Zonegran. And if the med change was sudden, that can cause major problems, too. I once went into status because of it.

For more professional info about SUDEP:http://www.epilepsy.com/sudep

 

[summerf]

Thank you, Fedup and Cint. I think sometimes the Internet is my worst enemy.

I have JME. If I just had myoclonic seizures I might not even take meds. The tonic-clonics are boogers, and I've gotten injured having them. I'm doing the med change slowly - over 5 weeks to (hopefully) prevent any seizures. I guess SUDEP could happen with NO meds, or any med.

I feel better. THANK YOU.

 

[Nakamova]

Hi summerf, has your doctor measured your serum bicarbonate? The FDA recommends that test before going on Zonegran (as well as during treatment), in order to monitor for metabolic acidosis. And make sure to drink a lot of water while you're on it.

See: http://www.fda.gov/Drugs/DrugSafety...mationforHeathcareProfessionals/ucm095251.htm

 

[summerf]

Nakamova, yep, I just had a level done. I'm trying to make sure I get enough water. When I first started Topamax I was better about drinking a lot of water. I haven't been as good about it lately. I don't drink a lot of soda, I just don't drink a lot of anything - I guess I'm kinda like a camel :/. I drank 3 glasses of water tonight, though. I'm going to make the best effort ever to drink a lot more water.

 

[Nakamova]

I hope it does the trick for you.

 

[huskymom]

Try not to worry. We can all go outside and get hit by a bus too! There, feel better now