Seizure control: I can't seem to get any help

Posted by seancaden @seancaden, Jan 3, 2018

When I was 14 I was in a car accident. (its now 30 years later) I hit my head on the windshield and didn’t realize for years how serious the accident was. A year or so later i started having starring spells and feelings that I had no idea what they where. I just continued on with life thinking it would just go away. At 18 I had my first grand mal seizure (that I know of). I then started having them frequently. I went to a doctor and they tried several medications. Most of them made me feel worse then having a seizure. Finding the right medicine is key to living a productive life with epilepsy. At one point I was on 3 different meds and I felt like a zombie. Its definitely no way to live. I finally found some medicines that could control my seizures while i’m awake. My seizures are now confined to my sleep. I have 1 or 2 every month and the after effects get harder to deal with as I get older. I don’t feel the same for up to two weeks following a seizure.
Everyone keeps telling me to suck it up but as people with epilepsy know its easier said then done. Its hard to keep a job because i have to call in at least 2 or 3 times a month. Then I’m not myself. Its hard for people to understand. I even have my Dr. tell me that medication is probably the only option. I haven’t had any tests for quite awhile now and i’m not going to settle for a life like this just because nobody cares.

Interested in more discussions like this? Go to the Epilepsy & Seizures group.

@bonnieh218

I think you have found the right place here. I spent many years with doctors not knowing what was going on, labeling my symptoms as anxiety. A friend suggested Mayo to me. Through their testing and observation in the epilepsy clinic, it took ten days to solve my puzzle. I had temporal lobe surgery in 1983. Solved my problem.
I too tried many meds. I had some side effects but my problem with meds was mostly allergies. I am on Keppra now with luckily no side effects.
I hope you can give Mayo some serious consideration and plan appointment time with them. THEY CARE!

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I believe that your seizure pattern not changing might be a good point when it comes to diagnostics. My seizures had no predictable pattern, that’s why I believe it took Mayo a few days for me because they need to be able to capture and record any seizure activity.
I don’t know where you are from but I will always continue to encourage anybody to visit Mayo.
I am from Minn. The University of MN also has an epilepsy center but they couldn’t help me at all. There are lots of good hospitals but they mostly seem to appear to be all about themselves and not the patient. (My personal opinion speaking from some experience).
After literally decades of no answers, I found my solution at Mayo. (and actually 3 solutions to 3 different maladies)
You have to understand they are not miracle workers and everybody is different even if they have the same illness, but as a team of doctors all working together they will keep digging and working for you.
I hope you find your answer soon.

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@seancaden

It’s amazing to talk to others that have experienced my situation. I haven’t come across many people in my lifetime that understand epilepsy. My existing doctor has been good at throwing medicine at it for many years now. I don’t expect him to snap his fingers and fix everything but I feel like the effort isn’t there. He might feel like since he’s been dealing with me for so long, there is just nothing else he can do. I understand that but I’ve heard of so many positive stories that I’m not going to settle for a life like this. I want to try my best to get better so I can be there for my son.

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Often the best way is to get to the top. Cut through the fog and dust and find the very best authority on a given subject. I have found this to be true not just in medicine but in dealing with all kinds of problems. Of course, it may not be easy to find the best person, but it is easier to do the research (in libraries, on the phone, or on-line, etc.) than to do itby trying one after another that doesn’t solve or at least improve the problem.

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@bonnieh218

I think you have found the right place here. I spent many years with doctors not knowing what was going on, labeling my symptoms as anxiety. A friend suggested Mayo to me. Through their testing and observation in the epilepsy clinic, it took ten days to solve my puzzle. I had temporal lobe surgery in 1983. Solved my problem.
I too tried many meds. I had some side effects but my problem with meds was mostly allergies. I am on Keppra now with luckily no side effects.
I hope you can give Mayo some serious consideration and plan appointment time with them. THEY CARE!

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That’s why you can’t waste time with no-talent or little-knowledge practitioners.

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@jshdma

It probably is not so much that “nobody cares.” More likely is that nobody KNOWS. Many medical conditions basically cannot be solved– no real treatment, and definitively, no cure. Of course this situation is extremely discouraging. It is probably difficult to keep from getting angry.

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Anger (in my case) is not directed at doctors or other people trying to help you. It is against the condition, an d the ieda that you have to accept a “new normal.”

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@seancaden

It’s amazing to talk to others that have experienced my situation. I haven’t come across many people in my lifetime that understand epilepsy. My existing doctor has been good at throwing medicine at it for many years now. I don’t expect him to snap his fingers and fix everything but I feel like the effort isn’t there. He might feel like since he’s been dealing with me for so long, there is just nothing else he can do. I understand that but I’ve heard of so many positive stories that I’m not going to settle for a life like this. I want to try my best to get better so I can be there for my son.

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Keep a good log, even if you have to spend a lot of your time writing or typing. For me, the more I do one thing the better I'm at it and it starts to take less time. You can always ask for a second opinion. Good luck. mlmcg

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I’ve felt really discouraged also, feeling like I am not getting help. Like the Dr. has just sort of given up. He pushed for a Lobectomy right off the bat, but when I went to MAYO for a 2nd opinion and EEG, they saw that the complex seizures were coming from both sides of my brain.
Then he pushed VNS, but the success stats didnt look promising. Now he’s pushing RNS. Seems like he just wants to try anything invasive just for fun. Every time I ask for non surgical options, he loses interest and won’t give me an opinion about it.

Anyone out there have experience with RNS? Or successful dietary treatments along with meds?

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Wow! You have received a lot of advise from people that have experienced similar issues, but know one has your identical story. I believe there is help for you, and this will take more research to find a specialist that has dealt with your health situation. I suggest you (if you haven’t already) google your diagnosis and symptoms of the illness you have. Google will provide several choices for you to pursue. Hopefully, this may be of help. Miracles do exists.
charlie75

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@national

I’ve felt really discouraged also, feeling like I am not getting help. Like the Dr. has just sort of given up. He pushed for a Lobectomy right off the bat, but when I went to MAYO for a 2nd opinion and EEG, they saw that the complex seizures were coming from both sides of my brain.
Then he pushed VNS, but the success stats didnt look promising. Now he’s pushing RNS. Seems like he just wants to try anything invasive just for fun. Every time I ask for non surgical options, he loses interest and won’t give me an opinion about it.

Anyone out there have experience with RNS? Or successful dietary treatments along with meds?

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Try a third opinion, or a fourth. The brain is like unexplored territory for most doctors, because they may never have studied it in med school or it wasn't offered. Sixty years ago almost no one believed the brain could get sick, but it can and it does. Do not give up. Do all the research you can then find a doctor who will work with you. Good luck. mlmcg

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Hi Sean
I’m a head and neck cancer patient and well past my main working years but I can understand how you feel. It’s hard to find people who really “get it”. Sounds as if you’ve managed your condition pretty well but it’s still very hard to suffer the long term consequences of illness or an accident. Other people’s empathy wears out and it can be very isolating. I really hope that the understanding you find here will make your 2018 a good year.

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@alpaca

Hi Sean
I’m a head and neck cancer patient and well past my main working years but I can understand how you feel. It’s hard to find people who really “get it”. Sounds as if you’ve managed your condition pretty well but it’s still very hard to suffer the long term consequences of illness or an accident. Other people’s empathy wears out and it can be very isolating. I really hope that the understanding you find here will make your 2018 a good year.

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I’m very sorry that you have to deal with cancer. I have lost both of my parents to cancer so I’ve seen how it affects people. Just know that i’m praying for you. I can’t believe how supportive everyone is here. It’s been great to find a place where you don’t feel “different”. I’m confident that 2018 is going to be a great year.

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@seancaden Hi, friend. I know a little of the crap you are dealing with. My wife was hit by a pickup as a pedestrian over 40 years ago, and she still struggles with some of the same stuff you have, although not as bad. And I live with an autoimmune hereditary primary systemic ATTRwt Amyloidosis which will kill me if I live long enough. Then I will have about 30 seconds warning. Many mds have just told me to get lost. Anyway, I have a suggestion for you that has helped me a lot. I have taken to writing up the story of my in-CRAP-eration. Just the writing, thinking through, and then getting on this line has really helped me understand what is happening. I have even posted it on Dropbox.com at https:/bit.Ly/1w7j4j8 , and made it freely available to anyone who wants to read it. You might find some strength inside you if you consider doing this with your stuff. Actually, it is sometimes fun, and even my987)(*& cat likes to help occasionally.

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It was so wonderful to find others like me to connect to. At least I don't have to feel like I'm the only one fighting the battle of trying to find a good doctor for grand mal seizures. Sean, reading your story has been the best part of my day. Prayers that you have get some help at Mayo. I look forward to following your story and hopefully finding a doctor their for myself. I've had epilepsy since the age of 15. Doctors in south AR are not plentiful to say the least or equipped with the knowledge for handling a severe case of epilepsy. Granted, when I was younger they were easier to control because doctors back then put you on the old tried and true, depakote, but now as the years have passed and my body has changed so have the meds. I am allergic to about 95% of them or they don't control the seizures. I've had over 200 that I know of, wrecked my car out of the blue, kept working, had status epiltucus, and the list goes on. The medication side effects are horrible. I'm on a combo of 3 now and I can't get out of bed hardly. This has gradually gotten worse over the course of a year and I've gained weight. When I suggested to the doctor that something needed to change it has become let's wait and see. Wait and see for what??? I'm frustrated….

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