1. < Epilepsy & Seizures

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.

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seancaden | @seancaden | Jan 7, 2018
In reply to @bonnieh218 "I think you have found the right place here. I spent many years with doctors not..." + (show)
@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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Thank you very much for your response. I have had doctors try to get me on anxiety medicine for awhile but I don't think it's my problem. I've found that the more medicine I take, regardless what for, the worse I feel. The seizure pattern doesn't change and that's the core of all of my problems.

REPLY
seancaden | @seancaden | Jan 7, 2018
In reply to @jshdma "It probably is not so much that "nobody cares." More likely is that nobody KNOWS. Many..." + (show)
@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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It is very discouraging and frustrating. I can't say that I get angry though. It's nobodies fault and I don't expect miracles from anyone. I can never give up trying for a "normal" life though.

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bonnieh218 | @bonnieh218 | Jan 7, 2018
In reply to @bonnieh218 "I think you have found the right place here. I spent many years with doctors not..." + (show)
@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!

Jump to this post

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.

REPLY
jshdma | @jshdma | Jan 7, 2018
In reply to @seancaden "It's amazing to talk to others that have experienced my situation. I haven't come across many..." + (show)
@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.

REPLY
jshdma | @jshdma | Jan 7, 2018
In reply to @bonnieh218 "I think you have found the right place here. I spent many years with doctors not..." + (show)
@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!

Jump to this post

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

REPLY
jshdma | @jshdma | Jan 7, 2018
In reply to @jshdma "It probably is not so much that "nobody cares." More likely is that nobody KNOWS. Many..." + (show)
@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.

Jump to this post

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."

REPLY
mlmcg | @mlmcg | Jan 7, 2018
In reply to @seancaden "It's amazing to talk to others that have experienced my situation. I haven't come across many..." + (show)
@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.

Jump to this post

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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Carpe Diem | @national | Jan 7, 2018

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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1 reply
charlie75 | @charlie75 | Jan 8, 2018

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

REPLY
mlmcg | @mlmcg | Jan 8, 2018
In reply to @national "I've felt really discouraged also, feeling like I am not getting help. Like the Dr. has..." + (show)
@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?

Jump to this post

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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