Need advice - Medical Alert?

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Katiered

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Good afternoon!

I was rooting around (rather unsuccessfully) on the internet for help, then realized you may have some valuable input with your years of combined experience!

I was diagnosed with simple partial seizures officially this week, although I have been taking Lamictal for bi-polar for years. I went off of it in October which really brought on the seizures. At my first apt. with the neurologist he got me on to Topamax rather than Lamictal. Finally up at full dose, and still having many seizures a week I went back for my next apt. and was told to stop taking Topamax, and am now going back onto the Lamictal (although at a much higher dose than they prescribe for bi-polar disorder, so hopefully it will actually stop the seizures).

I have two concerns that have lead me to believe I may need a medical alert bracelet, but don't want to do it just for the fun of it (because spending that much and having to wear something every day doesn't seem like fun at all! )

1. I'm concerned that stopping Topamax and super slowly starting Lamictal (he wants to work up to full dose over four months) will allow for even worse seizures than I've been having since they did worsen when I initially reduced my dosage of lamictal, and then again when I stopped it. They are so much more physical now, to the point where I've had difficulty breathing a couple times. I'm worried that they could be more involved than just simple partials?

2. I've read a lot of your stories where you have simple partials and then suddenly have a TC. Is it possible that simple partial seizures (with a normal EEG) to progress to more serious seizures?​

I'm curious for the sake of my future self, but also for the 'to order, or not to order' debate I'm having with myself.
 
It is possible for partials to progress to tonic-clonics, but there's no way to predict if that will happen for you. One way to minimize the risk of this happening during withdrawal, however, is to NOT stop Topamax cold turkey. Your neurologist should have you slowly taper off if it while slowly ramping back up on the Lamictal. Ask your neurologist about this option. There's no reason against it, and it can potentially help by providing peace of mind during the transition process.

As to wearing a medical alert bracelet, that's a personal choice. I only get tonic-clonics. None of them have come with any prior warning, and many of them have been in public. I don't wear a medical alert bracelet, and never have. But other people assess their risks and concerns differently. You might find these CWE threads helpful:

http://www.coping-with-epilepsy.com/forums/f27/wear-not-wear-medical-bracelets-3076/
http://www.coping-with-epilepsy.com/forums/f27/medic-alert-bracelets-do-you-wear-one-1003/
http://www.coping-with-epilepsy.com/forums/f23/medical-bracelets-16461/
http://www.coping-with-epilepsy.com/forums/f23/medic-alert-jewellry-7087/
http://www.coping-with-epilepsy.com/forums/f23/just-got-new-medical-alert-bracelet-will-help-18408/
http://www.coping-with-epilepsy.com...medical-id-bracelet-did-save-your-life-15828/
 
Thank you! I wasn't sure if it was possible for them to progress or not.

He has me reducing the Topamax over the course of three weeks. In your experience, if that a long enough time to reduce the risk?

Thanks again!
 
Generally speaking, you shouldn't taper off any faster than you ramped up. (It also depends on how high a dose you're starting at.) You might be fine reducing in 3 weeks, but my feeling is that going slower never hurts and may help. When I transitioned from Dilantin to Zonegran it was a 4-month process, and when I transitioned from Zonegran to Lamictal I did it over 3 months. Both transitions went smoothly.
 
I never took lamictal at a high enough dose to gauge the withdraw. But I do know that a t/c can hit you if you suddenly drop meds like Keppra. Tapering as slowly as possible is always the safest game plan. I wish you the best of luck.
 
My Neurologist ALWAYS gradually builds me up to the needed dose and if I get to go off it, he will gradually take it down. It's dangerous to just stop altogether, that's probably why you had the surgery. If your doctor just tells you to just stop taking them, then you need a new doctor. It has to be gradual. Ask your doctor questions and tell him what's happening. It's up to you as well as the doctor to keep you healthy.
 
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