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richardlsolomon
@richardlsolomon

Posts: 14
Joined: Nov 01, 2017

Dilantin, Toprimate to Keppra Dilantin and possibly surgery

Posted by @richardlsolomon, Fri, May 25 3:55pm

I been dealing with seizures 16 yrs. I been on Dilantin the whole time but added Toprimate a year and half ago. It seemed to be a little worse since now there looking to weaning off Toprimate for Keppra but stay with dilantin. My new neurologist mentioned another option of taking off meds and into a hospital bed. They would hook up electrodes to see what area the seizures come from. They possibly could look at surgery.
Has anyone done this? What are some flaws to surgery?

REPLY

I refused surgery twice but like you was on Dilantin for over 40 years until it became to unstable and
would no longer maintain a normal therapeutic level. I don’t advise long term use since it has been known to cause Peripheral Neuropathy. Not to say it will happen to you but the longer you take these meds there are often consequences. I’ve had Uncontrollable Epilepsy for 51 years with seizures 46 of those years. I learned to late.
I wish you well in your future treatment whatever it may be. Think about surgery VERY carefully and get at least a second opinion.

Liked by Jamie Olson

@jakedduck1

I refused surgery twice but like you was on Dilantin for over 40 years until it became to unstable and
would no longer maintain a normal therapeutic level. I don’t advise long term use since it has been known to cause Peripheral Neuropathy. Not to say it will happen to you but the longer you take these meds there are often consequences. I’ve had Uncontrollable Epilepsy for 51 years with seizures 46 of those years. I learned to late.
I wish you well in your future treatment whatever it may be. Think about surgery VERY carefully and get at least a second opinion.

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Thanks Jake, this is where I'm at also. I don't want to wait to long before I can have surgery.

What type implant are you getting?

Unsure but my neurologist said that they can hook up electrodes (EEG) while in a hospital bed and take me off medication and have a seizure to see if the can find what area my seizures are triggered. If it's safe area to do surgery, they could go ahead and do the surgery

I think your wise going off the dope-a-max as many people call it. My doctor tried to put me on it but I told him “It will NEVER happen.” Good luck with the Keppra.

I'm hoping Keppra and Dilantin work and if not being able to try and see if surgery is an option. I'm behind the doctor decision. Toprimate since I've started has been really crappy for me and just made things worse. It wasn't too bad just Dilantin as I been fighting forest fires for 15 yrs on it.

I had surgery and was told but there was a 50-50 chance of it working. My particular situation did not work and cost an infection in my skull. I think it depends on each patients situations.

@jakedduck1

I think your wise going off the dope-a-max as many people call it. My doctor tried to put me on it but I told him “It will NEVER happen.” Good luck with the Keppra.

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Keppra made me so tired as well as topamax and I was also on onfee.

@richardlsolomon

Unsure but my neurologist said that they can hook up electrodes (EEG) while in a hospital bed and take me off medication and have a seizure to see if the can find what area my seizures are triggered. If it's safe area to do surgery, they could go ahead and do the surgery

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The thing about epilepsy is that every person epilepsy is so different.

@briandungan

I had surgery and was told but there was a 50-50 chance of it working. My particular situation did not work and cost an infection in my skull. I think it depends on each patients situations.

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Good day Brian, hope the infection is good now though. How long ago was the surgery and did it affect you by having more, the same or less seizures. Thanks for sharing your information.

@briandungan

I had surgery and was told but there was a 50-50 chance of it working. My particular situation did not work and cost an infection in my skull. I think it depends on each patients situations.

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First surgery was 2012. At first I felt a lot better finished my college. In 2014 lots of seizures found the infection removed most of the infection from my skull. Still have the infection but a lot less. If I hadn't gotten the infection it would have worked.

@briandungan

I had surgery and was told but there was a 50-50 chance of it working. My particular situation did not work and cost an infection in my skull. I think it depends on each patients situations.

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Hey Brian it's too bad you got the infection cause understand how great it would of been for it to work. Hopefully maybe to get the infection done can cure it. I want to thank you for sharing your story and message me anytime of any changes. Good to hear different stories as it's something I may go through.

@jakedduck1

I think your wise going off the dope-a-max as many people call it. My doctor tried to put me on it but I told him “It will NEVER happen.” Good luck with the Keppra.

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Thanks Jake
If anything new comes up and can private message me.
Good to hear different stories of so outcome from others dealing with seizures

@briandungan

I had surgery and was told but there was a 50-50 chance of it working. My particular situation did not work and cost an infection in my skull. I think it depends on each patients situations.

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Although I understand everyone is different and may respond differently but you may ask your Neurologist about Phenobarbital (largest selling AED) however most docs don’t like it since it’s a barbiturate. Personally I think Benzodiazepines are far worse. I was on Klonapin, a Benzodiazepines and about never got off it. Where as Valum & Lorazapam (both Benzos) have no effect. But that’s me. I hope the Keppra works out well for you.

@jakedduck1

I think your wise going off the dope-a-max as many people call it. My doctor tried to put me on it but I told him “It will NEVER happen.” Good luck with the Keppra.

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Hi Richard,
You'll notice that I removed your private email from the public discussion board. I did this because Connect is a public site and we don't want you to get unwanted spam in your inbox. Should you wish to contact a member privately, simply click their name and send a private message. It is more secure.

While you can message each other privately, I'd like to point out the benefits of sharing in the forums. This allows others to join the discussion, such as Brian just did yesterday, and share their experiences so that we can all learn together.

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