Member has chosen to not make this information public.


Member not yet following any Pages.

Posts (6)

Tue, Jan 7 7:29am · Has anyone been seen at one of the Mayo Epilepsy clinics? in Epilepsy & Seizures

Thanks so much. He has had tonic clonic and focal seizures. We've used a rescue medication (Klonopin sublingual) twice to stop them but he's been hospitalized for 3-4 days four other times. He seems to lose functioning after that and has deteriorated over time. It's hard to tell if it's the damage from seizures or it is the additional medications they have added with each seizure! I appreciate the information and find the Mayo forum extremely helpful. Thank you!

Tue, Jan 7 7:23am · Has anyone been seen at one of the Mayo Epilepsy clinics? in Epilepsy & Seizures

Thanks so much for sharing your experience. I am so glad that you were able to use the clinic to get a better treatment option with the medication. I am hoping to have some information that will make it better for my husband's health and that his quality of life can improve. Best of luck and thanks again!

Wed, Jan 1 2:09pm · Has anyone been seen at one of the Mayo Epilepsy clinics? in Epilepsy & Seizures

My husband has an appointment upcoming at the Mayo Epilepsy clinic in Jacksonville, FL. What can we expect? They have all the records they requested. My husband is a stroke survivor that has had about 6 seizures in 2 years. He is on a lot of medication for a 77 year old person. Keppra 2000 mg a day, Vimpat 200 mg a day, and Lamictal 300 a day. He seems to be having rapid decline in memory and cognition since the Keppra went up and then the other two medications were added. I presume he will have an assessment interview and then maybe testing or options on medication changes? Any help would be welcome!

Wed, Jan 1 2:03pm · Any experience w/ med: Oxcarbazepine (Oxtellar XR, Trileptal)? in Epilepsy & Seizures

My husband is prescibed Clonazapam .5 sublingual for a rescue med. So far he has dodged 2 seizures with it. Before he was to take .5 Ativan, one or two tabs. That worked once, and later was replaced by the newer Clonzapam. I have been listening to webinars by Epilepsy Foundation. They had an excellent one that was about rescue medications. It is available to view after the webinar too. Google Epilepsy.com webinars. The rescue med was October 11,2019

Sep 26, 2019 · Living with epilepsy - Introduce yourself & meet others in Epilepsy & Seizures

Hello, and thanks for responding. His first seizure, at 5 months after his stroke, was a really bad grand mal. Each seizure had an aura where he sees red overlay over his vision. The second and third seizures were him just fading out after the aura- no convulsions, but his head and eyes got torqued to the left and his pupils were extremely to the left as well. He has had Todd’s paralysis after the last three seizures. He becomes unconscious for a couple days in the post-ictal stage. It takes weeks to have him come close to baseline. Each time he seems to have more and more setbacks with gait, ADLs, and aphasia, (which he always has had since the stroke). The ability to function is in some ways global- like not being able to remember how to fasten his watch band, remembering where things are in the house, putting on his clothes backward, and not being able to construct logical thought processes. He has not been able to read for pleasure since the stroke and of course, cannot drive. The mood swings are really awful. He is kind of flat most of the time but occasionally gets really angry and feels like breaking things or expresses desire to jump out of the car if we go over a bridge. This is so unlike him, ever, and has only been happening for the last month. (The most recent seizure started on 8/27.)

I just heard back from the neurologist about an hour ago, via the portal. She wants him to continue increasing his Lamictal from the 25 bid to 150 bid. She said he probably won’t need to be on all three medications forever, and maybe the Vimpat can be dropped, and that after we get the new neurologist (we have no appointment with the local one, who is an epilepsy specialist) until December 6. We live in a rural area with no neurologist at the local hospital. I don’t know if this can go on like this until then. He is on the waiting list for a cancellation. I think one option would be to drive to a nearby city where he was inpatient twice and go to the emergency room. It seems like any adjustment may take time? He is extremely averse to hospitals in general- probably because of the aphasia, which so many providers just don’t understand, and think he has dementia instead.

After reading more of the postings on the Mayo site, it is sobering to see how many people face so many hurdles to being seizure free. Any help is appreciated and I respect the experiences you have been through in your own life, and the breadth of your knowledge.

Sep 25, 2019 · Living with epilepsy - Introduce yourself & meet others in Epilepsy & Seizures

Hello, I am writing on behalf of my husband, who has had 6 seizures after a stroke at age 74. He is 77 now, and was doing pretty well, except for a seizure about every three months. The stroke was in his right hemisphere, temporal and parietal. He had an abnormality in that his language center is located on the right side, even though he is left handed. He almost fully recovered from the stroke, with aphasia being the most resistant to therapy. It is the seizures, and the medications for them, that are severely affecting his quality of life.

Does anyone have any experience to report on being on Keppra 2500mg./day, Lamotrigine 50 mg./day, and Vimpat 200 mg/day? He was on Keppra 3000 mg/day after the first thee seizures, and then after the fourth, the neurologist at a hospital in Boston added the Lamotrigine and the Vimpat. He was found to be at toxic level on the Keppra when they started to slowly reduce the dosage and he had the most recent seizure. His cogntition, mood, gait, balance and ability to function are now severely compromised. I know it is important to not have any more brain tissue damaged, but this state is not sustainable for him. I sent in a mesage via the hospital portal asking if they could at least do a level, or look at the combination. I know any reduction in dose is also a possible trigger for a breakthrough seizure. Any information would be appreciated. Thanks in advance!