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

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.

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.

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.