Topamax?

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I have mostly focal epilepsy, had one grand mal seizure this past summer that led to the discovery of swelling and scarring in the left side of my brain, and have since figured out that a lot of what I had been experiencing before the diagnosis were actually seizures and not just me thinking I was crazy. I started on oxcarbazepin which I badass bad reaction to, got extremely dehydrated and sick and broke out in a rash. Stopped taking that, and my neuro switched to keppra, which made me more angry than normal, and I didn't want to take it for various reasons, and it didn't seem to help, though I only took it for a brief period of time. Now he wants to put me on topamax, and says I need to start on a low dosage and work my way up, and that it takes about a month or more to start working. What should I do? I really don't want to take ANY medication, but the petite and focal seizures happen more often than I'd really like, and neuro says my risks are much higher without medication, and that the side effects with this are more minimal than many others. Any advice?

Comments

What should you do?? Do yo

Submitted by just_joe on Thu, 2016-10-20 - 20:38

What should you do?? Do yo uwant to have seizures? Or do you want them controlled?There are reasons they start on a low dosage. That reason is it they start at a high dosage then that dosage could be more then you need and for me it was a toxic dose. They stopped my use of it and that meant another 2 week delay before they could start it at a lower dosage. They other reason it takes about a month is because it tkaes about 3 weeks to get the therapeutic levels in your body. Seizure medications are not like aspirin where once taken it is out of your system within hours. The medication will start working but not at the levels they want. Which means there may be a seizure now and then during that time frame that you MIGHT have. Generally after that month you need to be noting ann the seizures you have and when you had them along with anything that was different that day. My neurologists wanted a visit after 3 weeks so that information can be looked at. Adjustments to the dosages can be made then.As for not wanting to take any medications fine. I know what can happen if you have been taking medications. I hate taking medications. But I also do not want to have seizures or a heart attack. I also want my mother to take her medications for her diabetese. You see medications are needed. Just so you'll know I hated taking mine so I stopped taking them. Ever read about status epilepticus?? I never did because there was no internet or even home computers. About 3 weeks after I stopped taking them I went into status eoileticus haqving 40 convulsive seizures (tonic clonic) an hour. All I really know is I came to or out of a coma 3 days later. I could tak]lk and function but nothing like I could before going into it. It took over a month before I was completely back to normal. Which means your neurologist is correct. Each seizure you have without medication will get longer and stronger.Anything medication you take has side effects. Aspirin has killed some people.My advice is to listen to your neurologist and take your meds as directed. keep a diary which you can get in here. note your seizures in it. bring it up at his office and he can see your motes and use the graphs to come up with dosage changes, medication couplings or procedures.I hope this helpsJoe

What should you do?? Do yo uwant to have seizures? Or do you want them controlled?There are reasons they start on a low dosage. That reason is it they start at a high dosage then that dosage could be more then you need and for me it was a toxic dose.  They stopped my use of it and that meant another 2 week delay before they could start it at a lower dosage. They other reason it takes about a month is because it tkaes about 3 weeks to get the therapeutic levels in your body. Seizure medications are not like aspirin where once taken it is out of your system within hours. The medication will start working but not at the levels they want. Which means there may be a seizure now and then during that time frame that you MIGHT have. Generally after that month you need to be noting ann the seizures you have and when you had them along with anything that was different that day. My neurologists wanted a visit after 3 weeks so that information can be looked at. Adjustments to the dosages can be made then.As for not wanting to take any medications fine. I know what can happen if you have been taking medications. I hate taking medications. But I also do not want to have seizures or a heart attack. I also want my mother to take her medications for her diabetese. You see medications are needed. Just so you'll know I hated taking mine so I stopped taking them. Ever read about status epilepticus?? I never did because there was no internet or even home computers. About 3 weeks after I stopped taking them I went into status eoileticus haqving 40 convulsive seizures (tonic clonic) an hour. All I really know is I came to or out of a coma 3 days later. I could tak]lk and function but nothing like I could before going into it. It took over a month before I was completely back to normal. Which means your neurologist is correct. Each seizure you have without medication will get longer and stronger.Anything medication you take has side effects. Aspirin has killed some people.My advice is to listen to your neurologist and take your meds as directed. keep a diary which you can get in here. note your seizures in it. bring it up at his office and he can see your motes and use the graphs to come up with dosage changes, medication couplings or procedures.I hope this helpsJoe

What should you do?? Do yo uwant to have seizures? Or do you want them controlled?There are reasons they start on a low dosage. That reason is it they start at a high dosage then that dosage could be more then you need and for me it was a toxic dose. They stopped my use of it and that meant another 2 week delay before they could start it at a lower dosage. They other reason it takes about a month is because it tkaes about 3 weeks to get the therapeutic levels in your body. Seizure medications are not like aspirin where once taken it is out of your system within hours. The medication will start working but not at the levels they want. Which means there may be a seizure now and then during that time frame that you MIGHT have. Generally after that month you need to be noting ann the seizures you have and when you had them along with anything that was different that day. My neurologists wanted a visit after 3 weeks so that information can be looked at. Adjustments to the dosages can be made then.As for not wanting to take any medications fine. I know what can happen if you have been taking medications. I hate taking medications. But I also do not want to have seizures or a heart attack. I also want my mother to take her medications for her diabetese. You see medications are needed. Just so you'll know I hated taking mine so I stopped taking them. Ever read about status epilepticus?? I never did because there was no internet or even home computers. About 3 weeks after I stopped taking them I went into status eoileticus haqving 40 convulsive seizures (tonic clonic) an hour. All I really know is I came to or out of a coma 3 days later. I could tak]lk and function but nothing like I could before going into it. It took over a month before I was completely back to normal. Which means your neurologist is correct. Each seizure you have without medication will get longer and stronger.Anything medication you take has side effects. Aspirin has killed some people.My advice is to listen to your neurologist and take your meds as directed. keep a diary which you can get in here. note your seizures in it. bring it up at his office and he can see your motes and use the graphs to come up with dosage changes, medication couplings or procedures.I hope this helpsJoe

Topamax?

Comments

What should you do?? Do yo

Submitted by just_joe on Thu, 2016-10-20 - 20:38

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