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Any Briviact experiences to share?
I was the last car in a 4 car collision in 2001. I had to have neck fusion and had horrible, unbearable headaches. I went to pain management, learned how to do biofeedback. I tried everything. Finally my pain management doctor recommended I take Trileptal and it was amazing. The doctor said it had been around for years and was known to help with migraines. My headaches finally became bearable. I was the type that would never even take Tylenol unless it was a have-to situation. Unfortunately, I don't remember him ever telling me this was an anti-seizure medication. I had only had 1 seizure in my life and it was a febrile when I was 3 and had pneumonia.
Around 3 years later my memory became terrible. We had taken a family trip and as soon as we got home, that trip was the first memory I lost. I had read where Trielptal could cause memory loss, so I just quit taking it. I was becoming desperate. Before I could get into a doctor to find out what was going on, I woke up one night a few months later to my husband and daughter standing over the bed, looking at me with fear, my husband had blood on his t-shirt. I had a huge grand-mal seizure and bitten my tongue. Meanwhile, my memory grew worse and worse. To be truthful the next several years were a blur. About 8 years into this mess, my memory was so horrible, I would forget what we were watching when the TV show went to a commercial. I went to many doctors and all they could come up with was that the seizure may have been from the concussion from that wreck and a swimming accident when I was a child. As far as the memory, no one had any answers. This all started when I was 39.
I finally got into Mayo and spent several days. They said I was probably starting early-onset dementia. What a horrible thing to hear. They said my short-term memory was probably gone and when it gets messed up there's no coming back. They showed me where I had a thin "layer of something" between a couple of places in my brain and that's usually where Alzheimer starts with dementia first. They really didn't have anything else to tell me except that I should have never cold-turkey Trileptal. You shouldn't ever do that with an anti-seizure medication. I was never told this.
Several years past and praise the Lord, my memory finally started coming back. There's no doubt in my mind that it was God's healing, because Mayo told me once you lose it, it's gone. I would still on occasion have a nocturnal seizures if I was going thru a lot of stress. Then one day I was in our grocery store looking at meat. I felt that horrible aura and started praying that it wouldn't go any further. Then I came around on a stretcher in an ambulance. I've had a few in random seizures like that, usually when stress is about to get the best of me, but I always had the aura. Last year out of nowhere I began having strange episodes. I'm not sure what they were. I wasn't doing involuntary jerking but it was like my brain wasn't there. The worst was when we were having our dishwasher repaired. I was getting dinner ready with the repairman in the same room. I felt an aura and then remember having to go to the bathroom. Then the man was gone and I was in different clothing, our kitchen floor was wet where I was standing. I believe I had urinated on myself.
My neurologist said that probably what was happening was my body was becoming immune to Trileptal. She started me on Briviact. There's not alot of information out there about people taking it. She started me on 25 mg twice a day and wanted me to increase it to 50 mg two weeks into taking it. This pill made my nerves so bad. I developed a temper. I never increased to 50 mg. My seizures and strange episodes did go away for about 6 months. Unfortunately a horrible family situation came into the mix. I have had about 4 episodes since June. Again, they weren't like the normal grand mal seizures or any type I've had over the past 15 years. These are too hard and weird to describe. They didn't leave me a zombie like the big ones do. The last one I was fixing my husband and I's anniversary dinner. I became so confused I tried to cook the steak in a saucepan. He liked to never have gotten me to let him take over. I have really been battling depression like never before too. I've always been the type that could find something good out of anything, but I really seem to be struggling. I know 2020 has been a mess of a year for everyone and like I said family struggles have made everything so much worse.
I'm curious if anyone else out there is taking this and what their experiences are.
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I have been struggling with seizures started after a TBI in 2005. I was started on Epilem which was causing s/e so I stopped the drug cold turkey too. The seizures had gone from 2 a year to approximately 24 a year. I was started on other meds for about 7 years which did not help, some made the seizures worse. I stopped all meds in 2012 & have been struggling with different things like the keto diet, in 2023 which has not stopped the seizures but has helped me feel slightly better in other ways. Stopping carbs helped stop the arthritis I had in my little finger & helped the inflammation in both knee's. It was recommended in 2024 to start Keppra again which I did not bother with as it did not help before. It is a worry about these drugs & their s/effects.
@santosha Hi Chris it takes me a while to get back to this site but good they send an email, as long as you see it with all the mail we get. I have been looking into the foods again with the keto diet, although it did not work for me. I have still stayed with that way of eating which i started in Jan 23 as I was not eating enough meat & needed to cut back on sugar, which has been very difficult. I have been trying to pick up health wise the last year after fracturing spine the end of 24 after a fall from a seizure. I am starting to feel a lot better & have started back with a physio for exercises needed for my Osteoporosis. I am just starting to look at the Drugs again but have not looked into the Epidiolex which i will do now. Thank you for you support it is very good of you sending the links which I read. I will look into Briviact too.
I had to put my mother into a home in 22 as I had been trying to look after her for a few years after she was left in pain 24/7 after her gallbladder was removed. I have been trying to focus more on myself. Thank you again & do stay in touch & I will do the same.
I saw a Neurologist after the fall & they wanted me to start Keppra again which I have not done. I tried so many drugs over about 7 years, it all gets very distressing at times.
Laura
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3 Reactions@laura1961
Hi Laura,
So good to hear from you again! 😊
I'm very happy to hear you have been feeling a lot better from your spine fracture with the assistance of a physiotherapist! My husband had severe problems with his spine in the past, and physiotherapy and later Pilates helped him a lot!
I was on holiday in Uruguay, returning home — São Paulo — at the end of last week. I was pleasantly surprised to find keto diet shops there, both in Montevideo and Punta del Este. I had the opportunity to meet the owner of one of the branches. He has epilepsy himself and has been seizure-free on the keto diet for seven years already. On this trip, I learned that Montevideo has a keto diet center at the British Hospital, listed by the International League Against Epilepsy (ILAE) — placing it on the same map as centers at Johns Hopkins, and genuinely notable for adult epilepsy ketogenic therapy. I've never heard of a keto diet center here in São Paulo or anywhere in Brazil. I was fortunate to schedule an appointment with Dr. Alejandro Scaramelli, one of the founders and leaders of this center, and came away genuinely impressed.
You mentioned trying the keto diet for a year with some benefits, but without stopping your seizures. Were you supported during that time by a doctor with guidance about your diet? I ask because Dr. Scaramelli emphasized that the efficacy of this treatment depends critically on close clinical follow-up.
Chris
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2 ReactionsI researched & started the diet myself really after listening to Drs like Ken Berry, Anthony Chaffee, Eric Westman to name a few. There are many Dieticians to get information from too. I eventually had numerous consultations with Dr Paul Mason another Dr who looks at diet before medication for all illnesses here in Australia. Dr Mason did so many tests but I did not seem to get very far over 1yr. These Drs get very expensive when you do not seem to be getting anywhere much. I have just gone back to look at the foods & fats to eat on keto as except for medications there is nothing more I can do. I have been listening to Dr Omar Danoun to see what there is in new medications since I stopped in 2010. There is a few new drugs Briviact & Epidiolex which I have been doing some research into. I would not mind trying the drug made from cannabis. I have found it hard to totally cut sugar & all carbs the last few years although I stuck to Keto, no sugar, carbs etc 100% for the 1st year no problem. I have been looking to see how much fat I had in the 1st year & how much I have been having over the last 2 years.
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1 ReactionHi @laura1961
I can well understand your frustration with Dr. Paul Mason. I have experienced that myself throughout my epilepsy journey with certain neurologists — but I persisted and eventually found a doctor who treats me holistically.
Have you tried searching for hospitals in Australia that have a ketogenic diet center for people with epilepsy, similar to the one I was fortunate enough to discover during my recent trip to Uruguay? It was quite an unexpected and very welcome surprise during my holidays.
Take care,
Chris
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Yes there is a hospital I will contact maybe although I have seen them before & the Epileptologist. I am going to see my Dr Thursday about the damage to my chin bone recently after a seizure I can not remember. Since these Drop seizures I am unable to have much hope at times. I will ask my GP about the Epidiolex from CBD that I have been reading about. Someone was recommending CBD to help seizures.
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3 Reactions@santosha No Chris I did it on my own after months of research. I followed various Drs in the US helping all sorts of illnesses with the keto diet. Do you know Dr Ken Berry & his wife Neisha, a nurse helping all sorts of people with all sorts of illnesses.
Hi @laura1961
I hope you had a peaceful Easter! 🙏
During the Easter holiday, I was reviewing my notes from my appointment with Dr. Alejandro Scaramelli and the materials sent by the British Hospital in Montevideo about their keto diet center. As he emphasized, the success of this treatment depends largely on close follow-up. Here is an excerpt from one of those documents:
"This is not simply a diet, but a metabolic therapy in which the brain's usual fuel is replaced by an alternative one — ketone bodies. They produce a state called ketosis, which must be sustained continuously, and it is this that leads to better seizure control. The treatment is rigorous, requires a series of careful steps, and must be carried out by a multidisciplinary team specialised in it," explained Dr. Scaramelli. "It is an established treatment, universally accepted, and increasingly used in developed countries for its high efficacy."
During my appointment with him, he mentioned Dr. Ingrid Scheffer — an Australian neurologist and epileptologist — with whom he apparently had contact during the development of the British Hospital Keto Diet Center. Researching her a little, I found that she is one of the world's leading experts in epilepsy, based at the University of Melbourne, the Austin Hospital, the Royal Children's Hospital, and the Florey Institute of Neuroscience and Mental Health in Melbourne, Australia.
It might be worth looking into her work and considering whether reaching out to her could be valuable for you.
Wishing you the best of luck!
Chris
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2 Reactions@santosha Thank you so much I have not come across her, I need to do some more research as I have only seen the Drs from Australia here in Brisbane. Although I did have 4 consultations on the net with a Dr Paul Mason in Sydney who is with a group of Drs around the world who work with the Keto & Carnivore diets 1st before medications for many illnesses. Dr Ken Berry was the 1st I came across who is in the USA. Unfortunately I did not get far during 25 with Dr Mason although he did a lot tests. I have been doing some research into Dr Omar Danoun from the USA on Utube as he was an Epileptologist I thought knew a lot about the drugs, good & bad. Dr Mason is not a Specialist in brain injury, unfortunately.
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1 Reaction@santosha The research I have done since starting keto Jan/ 23 has shown that it seems to work well with children especially. I stuck to the diet for 12 months but it did not stop the seizures. Friends say it seemed to have helped a bit so I have since stayed on a keto/type diet. I have found it is very hard to stick to especially knowing it did not STOP the seizures. I have cut nearly all carbs although I occasionally add a croissant for breakfast & occasional choc, that is a hard one. I slowly added these back occasionally over the next 2yrs. I stopped all breads, pasta's, rice etc & eat a lot of meat & fish with some dairy, mainly yogurt.
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