4 recent seizures...time for new meds?

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patek8ks

patek8ks

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Just recently...like last evening was one...my gran mal seizures have started back up. I've been experiencing them now at least once a week =0(. I see my neurologist in a couple of weeks which in the meantime I am very nervous because I've just had my shoulder replaced due to my seizures and I do not want to reinjure myself in the meantime. I'm pretty certain my neurologist is going to be adding another AED as I'm already on Topomax 100mg 3x a day and have now been experiencing continual breakthrough seizures this is unbelievably frustrating......
Patek8ks
 
Call them anyway and see if there may be a cancellation and they can fit you in sooner. You need to be seen ASAP. I'm on two AEDs and still have break-thru seizures.........
 
you might need try something other than AEDs like the VNS.It may not have worked for me but it seems to do wonders for others.And definitely keep at up neuro for an apt as soon as possible.
 
I appreciate your replies!! =0) yes I am willing to do just about anything at this point...I just want to cease these seizures for awhile.
 
So Patek, have you called your doctors office and talked to anyone, tell them what's going on with you? They could possibly increase the dosage of the Topamax, if that's possible.
Either way I would call them and tell them you need to get in immediately, or they should do something over the phone concerning your meds. Sometimes you have to get in their face a little, without necessarily being rude.

As far as changing your meds, yeah that's a very likely possibility, or at the minimum adding a new one to your present medicine. What's a bummer is that most/all? AED's tend to lose their efficacy over time, at least from what I've read. Hence the doctors oft times have to experiment with different AED's in an attempt to find one/two that can effectively work on a person to prevent seizures long term. If we're lucky they come up with one that works for us personally long term, remembering that AED's can effect different people quite differently, basically there is no one size fits all.

Anyways good luck, and get on the phone and demand they do something now. You deserve it.
 
Yes they have started me on a Med caller Vimpat and are scheduling me for a 48hr eeg test. I am much more relieved now considering I have not felt like myself in a week now. Here's to improvement!
 
Stress (which I'm sure you're dealing with) is a major seizure trigger for me. Try not to get yourself worked up over things but I know that's easier said than done.

I'm not sure how long you've had epilepsy for, I have for 10 years and at first it took a ton of trying all sorts of different meds but nothing really seemed to help much. Messing around with your meds isn't fun but it's just something that you have to do sometimes.

I ended up getting a VNS and it's helped a ton, still taking meds too however. I'd gone from having around 5 bad seizures a week to about 5 not too bad a month, which for me is good. I don't think I'm ever going to be seizure free but this I can deal with.

You might want to ask the neuro about a VNS and see what he has to say about it.

Good luck and I hope things go good.
 
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