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.

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 New text books, just off the press, are a year or more out of date. Anything on-line might be only 6 months or more out of date.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

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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.

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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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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.

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@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?

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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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i have grand mall seizures from amalgam mercury poisoning and NO doctor will even admit that mercury is a neuron toxic so I am on my own trying to get the mercury out of my brain and all they do is give you meds that are poisonist to your body also.One med KEPPRA has aluminun and titanium dioxide in it.Aluminun damaged the brain and titanium doixide causes cancer. Has anyone on here gone through this

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@joedavid

i have grand mall seizures from amalgam mercury poisoning and NO doctor will even admit that mercury is a neuron toxic so I am on my own trying to get the mercury out of my brain and all they do is give you meds that are poisonist to your body also.One med KEPPRA has aluminun and titanium dioxide in it.Aluminun damaged the brain and titanium doixide causes cancer. Has anyone on here gone through this

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I’m on Keppra now and would love to hear responses to this.

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@joedavid

i have grand mall seizures from amalgam mercury poisoning and NO doctor will even admit that mercury is a neuron toxic so I am on my own trying to get the mercury out of my brain and all they do is give you meds that are poisonist to your body also.One med KEPPRA has aluminun and titanium dioxide in it.Aluminun damaged the brain and titanium doixide causes cancer. Has anyone on here gone through this

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Hi. I do not have epilepsy or seizures but saw this. I hope you don't mind it I comment. My point is that we have to be careful about writing off some of these medications without looking at all the scientific evidence from authentic medical sites. I don't think it is proven that titanium dioxide causes cancer and with all strong meds you have to weigh the benefits against the risks. I would rather take an effective medication and accept the small risk in order to live well now. I had all my amalgam fillings out because an allergy test showed a reaction to mercury and amalgam. Result: out of pocket and not an iota of improvement,

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@joedavid

i have grand mall seizures from amalgam mercury poisoning and NO doctor will even admit that mercury is a neuron toxic so I am on my own trying to get the mercury out of my brain and all they do is give you meds that are poisonist to your body also.One med KEPPRA has aluminun and titanium dioxide in it.Aluminun damaged the brain and titanium doixide causes cancer. Has anyone on here gone through this

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I started Keppra 2 weeks ago. Starting to feel much better. (less side effects) It's early in the process but I'm staying positive.

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Hello – I thought you might like to know that one of the members in this discussion about seizure control, @dawn_giacabazi, is featured in today's Mayo Clinic Connect member spotlight: https://connect.mayoclinic.org/page/about-connect/newsfeed/giving-back-meet-dawn_giacabazi/.

Hope you enjoy reading about her story and getting to know her a bit more.

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