Frustrated / Need Help
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simpleneuron posted:
I was diagnosed with Epilepsy as an adult 25 years ago. The cause was a head injury that occurred when I was 4 years old. Throughout the years I've been taking meds for temporal lobe simple partial seizures but none seem to be effective and are causing other problems to develop. Before making medicine change two weeks ago, I've taken Tegretol, Neurontin, Depakote, Topamax, Lamictal. Migraines have always been a terrible sidaffect and in the last couple years I've noticed my eyesight is much worse. 3 eyesight prescriptions in the last 2 years. After moving to Montana 9 years ago, I discovered that there are no neurologists in my area. My family doctor does his best to take care of me but I realize he isn't trained well enough for me.


We decided to make a medicine change two weeks ago in an effort to prevent migraines and possibly help eyesight issue. I am currently taking Keppra 500mg 2x daily and Oxcarbzepine 150mg 2x daily. The new meds are not working and I'm having at least 4 or 5 simple partial seizures every day. Who knows how many when I sleep. My memory is being affected and I'm in a constant state of confusion plus the meds make me extremely weak and sleepy.


10 years ago, my Neuro doc suggested that an implant may help but I thought it was too invasive at the time. Since my seizures have never been 100% under control and I have such bad side affects, should I reconsider the implant?


I would like some sort of advice because I cannot live like this. As it is right now, driving is not wise and holding any kind of employment is impossible. My family is going to be living in a cardboard box if this continues.
Thank you for ANY help.
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ilovetutu responded:
I'm sorry I cant offer any direct help only words, I hope you find the help you need
 
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dancer86442 responded:
Hello,


Welcome to Epland AKA Epilepsy Community. I'm sure you already realize, that for Any Proper Epilepsy care/Input from a neuro or Epilepsy specialist (epileptologist) that you will Have to travel!


From what I have read, recently, simples are the hardest seizures to control. As you are learning from first-hand experience they can cause other issues such as eye sight problems. Plus, Migraines are, actually 'kissing cousins' of Epilepsy. www.epilepsytalk.com has articles about each Issue if you would like to learn more. Plus, I believe Phylis, also, has an article about the brain implant you are thinking of. There is no need to join her site to read her articles.


I would like to offer one other Possible solution. You may have to travel & go to Washington State to get a Dr & a prescription. Have you done any 'homework' about cannabidoil? Yes, medical marijuana is the 'latest' Big News in the Epilepsy World. But, it has been proven effective for Lots of Children & some adults. (Research is focusing on the kids, of course. ) As for Adults, I am basing 'effectiveness' on what the Group members on Facebook, have said.


I'm sure you know that it can take up to 6 weeks for meds to work effectively. For side effects to diminish or Increase. Are you eating as Nutritiously as possible? It could/would make a difference in how your meds work & help diminish/eliminate Some side effects. Keppra may cause Very Bad Mood Swings for some. So, if you decide to go the 'extra mile' & stick w/ the meds, please, add B6 to your vitamin regimen. By itself. Not as an additive to your multi-vitamin or B Complex vitamins. It Does Help!


So, now you have options. I wish I could make the decision for you. But, this is best discussed w/ a Neuro or Specialist. BTW: Phylis has an article that may help you locate a Physician, specialist or hospital in your area or in Washington. All recommended by others' w/ Epilepsy. Your Choice.


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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simpleneuron replied to dancer86442's response:
Candi, thanks for the information/suggestions. Over the years I've researched a lot of new and older meds and I came to the conclusion many years ago that ALL have negative side affects. Doctors sometimes are on a "fishing expedition" to find the right meds. I'm not sure how Keppra ever got approval by the FDA. My doctor doubled Oxcarbazepine and stopped Keppra. The mood swings that Keppra brought were horrible and I think the stress that Keppra brought was actually causing seizures. Since changing meds Saturday (3 days ago) no seizures and mood is getting back to normal. I just have to watch my sodium.


I'm also aware that extensive migraines have an affect on eyesight too.


The closest Neuro/epilepsy specialist is in Idaho Falls which is 3 hours drive. Then the next closest is Salt Lake City 6 hr drive. I used to live in Salt Lake City so it looks like I might be visiting a little more often.


Thanks for the help!
Chuck
 
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dancer86442 replied to simpleneuron's response:
Hi Chuck,


Yes, our meds do have serious side effects. But, it really depends on a persons system & how it adjusts to the meds. I sure wish Drs Would Tell patients on Keppra about the B-6 to control the mood swings. Even when a patient tells them what is happening, they don't give them any 'tips'. They just take them off the med. But, what if that med actually controlled the seizures? I think I would rather add an extra vitamin to my regimen, if it meant seizure control vs. side effect that can be controlled, too.


OK, so you are off the Keppra. Well, that is Good. And not just due to the side effects. Most Drs don't tell ya this either. Mono-therapy has actually been proven (in the UK ) to work Better for people w/ Epilepsy. So, Stay Strong & let's see how the next 2 weeks go. (keep up w/ your Daily Journal! )


Yep, Double, maybe Triple Whammy on the eyesight. When you throw in Age factor, too. )


I used to live in UT. But, on the South end. Glen Canyon National Park, Bullfrog. Hubby did maintenance/electrical work for the gov, there. HMMM? Wouldn't hurt to have another Opinion. Rite? So, go see the Closest doc first. If you like them, then OK. If Not, then you still have SLC to go to.


I hope you will keep us posted. I really would like to know how you are doing. Take care. Hugs


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.