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seancaden
@seancaden

Posts: 11
Joined: Jan 03, 2018

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

Posted by @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.

REPLY

@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.”

@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

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?

Liked by seancaden

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

Liked by seancaden

@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

Liked by seancaden

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.

@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.

@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.

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….

Frustration is not a new word for the way medical schools teach their students. New text books, just off the press, are a year or more out of date. Anything on-line might be only 6 months or more out of date. I always tell a new doctor that if he/she doesn't like a challenge then I am not a patient for them. I have found that a young doctor who enjoys a challenge is the right one for me. Unfortunately, the one I wanted, he wanted to teach, have patients and work in the lab, he was accepted at a school out of state. I have not had seizures but I am taking Gabapentin (Neurontin) for nerve damage. Yes, there are side effects, which I knew there would be. I started out at a very low dosage and each time the dosage was increased I had some of the same side effects and new ones. I am happy, today, where I am, but the dosage you would have to take to help control your seizures would have to be so much more. I also have a long list of meds I cannot take, I'm not allergic to them its just that my body does not like them. They call it an intolerance, which means I cannot get any of the meds on that list.

One suggestion is to learn all you can about seizures, if you haven't already. The more I have learned, and the more I was specific about what my needs were I was able to get the help I needed. May you enjoy becoming an expert on seizures and the meds. Good luck. mlmcg

Have you consulted with an epileptologist. They often get results when Neurologists don’t. Also remember it often takes a great deal of time and patience to get the correct cocktail of meds that are right for you. There are good docs out there but not always easy to find.

First of all, you should think about getting another doctor. We found great help at the Mayo clinic in Rochester, MN. The doctors in Boston were literraly scratching their heads on unsuccessful treatments which only included medications. Also, I think most people and some doctors just dont know enough about seizures, its not that they don't care. Dont give up.

Its not that people don't care it is that we are a very hard case since not one of us have the same conditions of seizures. I was told that I was a complicated case due to having many kinds of symptoms some are Psycho Motor some are Partial Complex seizures I have not had a grand mal since I was 23 years old. I was told that mine are psycho somatic meaning my brain gets stressed and I have these kinds of spells lately I have found out that they are due to holding my breath since I am concerned about you I would like to let you know that you have to be your own advocate some times we have to ask the doctor for help like getting a second opinion like I did at Mayo Clinic. I would like to let you know that you are not alone many others have the same situation that they feel that the doctors don't have a cure right away. It is so sad that we have to go through so many medications before the doctor can finally help us or there are those doctors that don't have a magic solution as I have trouble with myself. I am now 60 years old I have gone through menopause so that was a big help. I would like to share that you may not be breathing good so that can be a factor too.

@boston2mayo

First of all, you should think about getting another doctor. We found great help at the Mayo clinic in Rochester, MN. The doctors in Boston were literraly scratching their heads on unsuccessful treatments which only included medications. Also, I think most people and some doctors just dont know enough about seizures, its not that they don't care. Dont give up.

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Hello @boston2mayo. Welcome to Mayo Clinic Connect! Glad to see you have a joined this group. Thank you for posting.

Are you a care taker for someone with Epilepsy?

I wanted to let people know that after 20 years of the same doctor and 8 different meds with no seizure control it was time to move on. He seemed happy with just letting me go through life over medicated and no seizure control. I'm telling people not to wait as long as I did. My local doctor just wasn't willing to look at the facts. I found a doctor that is willing to work with me. What a difference working with people that care. I'm hoping Keppra works. The side effects are better then they have been for long time.

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