Living with epilepsy - Introduce yourself & meet others

Hello and Good Afternoon!

My younger brother Matt of 28 years has just had his seizure medication changed to Vimpat since he had close to 10 Grand Mal seizures this year, having been seizure free since November 2009.

My Questions:

Do doctors usually have more inputs than just a person's weight, age, and last Grand Mal seizure for seizure medication adjustments?

Do medical teams reporting to prescribing doctors, use the genome of the patient to mathematically model upcoming nerve stimulations?

If so, would the intent of the model be to predict the magnitude of neuron release from the synapse based on blood content circulating through the brain in addition to the air content being inhaled?

If so, would all Mayo Clinic sites do this type of modeling, or would the Rochester site be solely assigned to modeling neuron output of a patient's synapse?

I see many parts of both questions could possibly be answered from this thread.

Thank you for being my brother's voice.

Hi, my name is Denise and my 31 year old son was diagnosed as having epilepsy after having 2 seizures within a few months of each other. the VA doctor actually said "if you have 2 or more seizures you have epilepsy". That was over a year ago and he continues to have seizures. They gave him Keppra and sent him on his way. Nothing more. I am looking for a plan of attack for these seizures. What do we do next. He is not satisfied to just take Keppra.
he has both private insurance through his job and the VA. What is his next step? I found him a Neurologist and will see him in a week. The Keppra does not work very well and he is afraid he will not be able to drive,hence not work,hence no private insurance. All this anxiety is not good for his condition and the Keppra doesnt help his anxiety at all. We need a plan what do we do Now? where do we go for REAL answers?
Any ideas would be appreciated. Thank You!

At which medical center did your son receive his diagnosis? I would like to suggest visiting the Mayo. If the Keppra isn’t working for him, they will keep working to find something that works. They will also look at other things, like the anxiety, that might be contributing factors and not just the epilepsy. They can also do gene testing to find which medication works best for him. I don’t know if this is a possibility for you or not, but with three Mayo Clinics now I strongly believe this is the best option. Sending best wishes to you as you move forward.

They started me on Keppra, and I made it 58 days without another seizure.. then I had a seizure 2 days in a row, so my neurologist added Vimpat and now I”m 75 days seizure free.

Thank you Bonnie and valm. We are in Syracuse and heading to a Dr. at Crouse Med center next week. I'm hoping he has a plan or at least more information. I am not opposed to going to Rochester. I believe there is a Mayo Clinic there. My son is the type of guy that needs to know all the science behind his health issues. He likes action and is not satisfied with vague answers. He can get agitated with "experts" and caregivers that he feels are just trying to "manage" him. This is his problem with the VA. They just want to attribute all issues to PTSD and up his disability and be done with it.
I know his anxiety and sleep problems play a significant role in the frequency of these seizures and I would like to see that addressed. The Keppra is causing increased depression and mood swings that he has to work so hard to control. It is exhausting for him.
I'll let you know how it goes and whether we will be going to Rochester for more help. Thank you valm, I will be asking about Vimpat..

If you go to Rochester, MN, I’ve heard that they absolutely figure things out... where in your brain your seizure is starting, what meds would work, etc. I’ve also heard that they are better there than any of there other clinics..

Absolutely there is a Mayo Clinic in Rochester, MN that is. The very original started in Rochester, MN. I've never been to the one in FL or AZ but have been to Rochester. The very best in dealing with seizure disorders.

Hi! My name is Pam and I am the mother of a 40-year-oid son with uncontrolled seizures. They started without warning when he turned 3 (he was "normal" until then) and have continued for the last 37 years. No cause has ever been discovered. He lives at home and has slowly become totally disabled (mentally and physically) as the years passed and the seizures continued. They are when he is asleep 99.9% of the time, so we are fortunate there (less chance of injury). We have tried many anti-seizure medications, many diets (including the very strict ketogenic diet), and many alternative treatments without lasting improvement. For the last 2 years we have been trying medical marijuana, with mixed results. I would love to hear any suggestions/ideas that have worked for others in his situation.
Thanks so much!

Hi . My name is Mary and my granddaughter Talia has been in the hospital for 33 days now in a medically induced coma. She had a seizure about 8 years ago and she was giving medicine for it. She didn't have any more for about 4 years then she would have one every couple of months. But on July 29th she had a seizure and was taken to the emergency room at the hospital in our city. The hospital flew her to a major hospital in Albuquerque New Mexico where they said they wanted to stop the seizures. They put her into a medically-induced coma. Yesterday the doctor said that they have tried almost all medicines they could think of. They have two more that they want to try and if those don't work they will try electroshock therapy. If that doesn't work they said they were out of options they can't allow her to wake up because they say if she has a seizure it will damage her brain. If electric shock therapy does not work there's nothing else they can do. Please if there's someone that has a suggestion for my son on what he can do for his daughter please please let us know thank you.

My granddaughter has been in a medically-induced coma for the past 33 days. The doctor said she was having a seizure every hour or so that lasted for a minute or two. They put her in a medically induced coma to try and stop the seizures and in the past 33 days they have tried quite a few different medications. Nothing has worked. They said there are two more medications they can try and if those don't work they will try electroshock therapy if that doesn't stop the seizures they said there is nothing more they can do. They can't allow her to wake up because they say if she has a seizure it could damage her brain. There's nothing left to try. Please if someone has a suggestion for my son to help his little girl please please let me know. Thank you