On less meds than ever before, do I up it again?

[Zara-Newman]

I am on 100mg of lamotrogine twice a day and will be down to 50mg of zonisamide twice a day by the end of the week.

Since starting taking meds I've always been on highish doses, generally 200-300 of two tablets twice a day, plus clobazam when I have myoclonic jerks.

Now I am on my lowest dose ever since starting, my seizures are exactly the same as they've always been.
I've taken a lot of medication and none of it has worked.

They want to put me on clonazepam but the write ups and side effect list scare me.

I don't know if maybe I could come off the medications if they don't make any difference and try some natural remedies.

Also has anyone heard of "Responsive neurostimulation" I don't know if I could have it, but it seems good for drug resistant epilepsy.

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[Fedup]

I heard of 'Responsive neurostimulation' before but I did not realise it was available in GB or Ireland yet, it was developed in America to help with partial onset seizures, it responds to electrical activity in the Brain.

 

[Zara-Newman]

On the epilepsy website it said it was available throughout the EU now.

I am just unsure of my options

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[Fedup]

I know that for the Responsive neurostimulation you have to have surgery and it is not known for sure of its effects or the possible side effects of the surgery, but it is worth looking into.

 

[zombelina]

responsive neurostimulation seems cool because it helps your seizures more and more over time. I guess it sort of teaches your brain to stop having seizures. Your seizures can get better and better over the course of many years. My doctor mentioned it one time and said the device records your seizures and sends the data to the doctor for them to review.

As far as medication, when I came off zonisamide I had worse seizures for 3 days each time I decreased the dose. In the long run I'm not sure it made a difference being on or off it. I did eventually have to try adding a 3rd med again, so maybe it was making a difference after all. who knows...it all seems so random sometimes. Be very careful whatever you decide to do and work with your doctor if you can.

 

[Zara-Newman]

I've come off zonisamide almost completely now, I will be down to 50mg tomorrow.
I've not had any issues at all, I actually feel better than I have in ages.
This is with my epilepsy nurses support.

The next med is clonazepam and I am a bit worried that it seems very heavy duty.

In two weeks I will be on 100mg of lamotrogine, and if my seizures are still the same, I just wonder if it would be worth lowering that too and seeing what it was like without any.

Since they've never decreased with medication.

(Do I make sense)?

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[Zara-Newman]

I would really like the responsive neurostimulation, I am hoping to speak to my doctor about it, but I don't get to see or speak to him much.
I don't know if it would work for my seizures; someone told me it only works for partials?

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[zombelina]

It makes sense, and I'm so glad you are almost off the zonisamide because it seems like you've had a difficult time with it. Maybe ask your epilepsy nurse about the lamotrigine. It probably depends on the clonazepam. They may have chosen it because it works well with lamotrigine or something? I wanted to reduce one of my medications and the doctor said to wait and see how the Vimpat works first, just to be safe. But I know we are all different.

 

[zombelina]

I'm not sure about the rns, but I think it might only be for partials because they put two leads on the brain, in up to 2 areas where the seizures start. I'm really not sure though.

 

[Zara-Newman]

Yes, the zonisamide made my body poison itself, so I am very glad I am off it and my liver is recovering.
I have a phone appointment to talk about the lamotrogine next Wednesday, I won't do anything myself until then

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[Zara-Newman]

I will ask my neuro when I see him, won't be till October, but no immediate hurry on that front

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[Fedup]

The RNS is supposed to be firstly for partial onset seizures but they did think at the time that maybe it might benefit other seizure types but that part I know nothing about.

 

[Zara-Newman]

I will ask at my next appointment, I kind of feel that medications are useless and are only doing harm.

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[Janus]

Great info here. Rather dated good nonetheless.