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Kathy781

Treating seizures today

It has been 20-30 years or more since a doctor has treated me for my seizures. The reason for this is I was dismissed because the side effects were worse than my seizures. I am very sensitive to medications. Not just seizure medications but all kinds. I don't mean to bore everyone explaining this each time I post but even my family doesn't seem to understand just how sensitive I am and they make me feel as if I need to remind them each time they bring the subject of my seizures up. Ok, now to the purpose of this thread. My husband has passed  away recently and I'm here alone without no transportation. My family is trying to encourage me to go back to the doctor and try today's medications. They say that medications have improved so much now that they might be able to help me and maybe I could get my liscence back and drive again. I haven't driven in 41 years. I realize that I will have to go at least 6 months without a seizure and it is according to my state as to just how many long it is. I am in my 60's and I was wondering if I did this, what should I expect? Back when I was going, it was tests, blood work every visit, going very frequently and terrible side effects to the point that it didn't really seem worth it. Plus, if I should get my liscense again, I figure the insurance would be unafforadable because I have epilepsy. At my age, I just feel like it wouldn't be worth it especially if I'm going around in a zombie state most of the time.  Also, stress is one of my triggers. If I started driving again, I'm afraid I would be so nervous and this would cause a seizure. Then, I would be right back where I started. I probably sound as if I don't want to try to help myself but after all the side effects I have been through all these years, I can't help but think of this and be a little afraid of starting over. If I should decide to do this, what should I expect today pros and cons?

Comments

Re: Treating seizures today

I understand where you are coming from. I have been taking AEDs since 1962. So I do know about the medicines back then and now. Most medications prior to the late 1970's were basically downers. The medications back then worked on the whole brain calming it down. My neuro asked me how I woke up in the morning considering I was taking enough phenobarb to put the average man to sleep for 24 hours I was also taking dilantin and tegratol.

Medications today are being designed to work on different parts of the brain. They have reduced the length of time in the seizures and the length of time to focus (get back to normal0. In the 80'sand 90's the seizures I had would last several minutes and focusing would be 30-45 minutes sometimes longer and if I was at work and it was longer than the 30 minutes I went home. The new medicines have reduced those same seizures to seconds instead of minutes and the focus time is from 1-3 minutes.  There are many more people with epilepsy who are seizure free now compared to 20-30 years ago. Some have even had brain surgery and have no seizures.

The neuro would need your information or medical files. He wouls also do some tests. The information in your files and the EEG he has done would give him options on procedures and tests. The EEG would show any seizure activity and where that activity is. The more information he has the better he can determine which options would be better for you. Which things can be done to get you seizure free.

I hope this helps

Re: Treating seizures today

My guess is that it was probably in the 80's or 90's that I quit taking medications and didn't start until after I married in the early 70's. I do know that Tegrotol and Dilantin were 2 of the drugs I tried. There were many more but I can't remember them. Just_Joe, were these two drugs that I mentioned like you described from the 60's and 70's? 

Re: Treating seizures today

OH yes they did control the seizures but they also made you tired. They slowed you down because they worked on the whole brain. Add the phenobarb to them and you have stuff that will put men to sleep. I have been taking more meds than the manufactors recomended amount becasue I can handle more than most people. I have also taught myself to block out things like head achs.When I had surgery on my knee I was given a RRX for a pain killer. I took 1 pill after that I used asperin. The mind can do things most people don't think about. I have litterally gotten my blood presure down. It was high when I saw my PCP knowing I had to see him in a three days I aske him what he wanted it to be and what it was. Three days later it was what he wanted.That has happened with my neuro too. I will be taking meds the rest of my life. I know it and have accepted that fact.

I was tired of meds and got on a kick and stopped taking my meds when I was 19-20 I went a little over a week and was on my way home and I was tired. I stopped at my mothers house rather than go home to my apartment. I can say I am glad I stopped there. While I was asleep that night I went into status epilepicus. I was having 40-50  convulsions an hour. I passed out after the third. I work up 3 days later. I talked to the doctors who said I could split a hair a thousand times and thats how close to seeing Gods face I was . They had given up on me. The head of the Hospital had called my mother to come pick me up and before she got there I had gone into Status again. People can come out of status gnerally with few problems but back then if you went into it again you might not live thru it. Like I said the doctors had given up on me. The head doc said they had but my mother never quit praying. So I know that if it werent for a mothers prarer I wouldn't be hear. Relegious kick can do things. I do know I was put here to help people in any way I can, I also heard him say I can heal but I also teach others to heal thats what doctors are to do.

I have been blessed to have a team of neurologists handing me when one retires of moves over to a different speciality I get introduced to the one handling me. I have had 5 different neuros since I landed in Dallasand the ones I have today knew the first the one before this one retired before that one he went to some other project that nedds neuros.He was good and had handled me in the early 80's.

 Later

Re: Treating seizures today

My problem then was, I got all the side effects but as for helping my seizures, it was like drinking water. They never improved at all on every medication I tried regardless of the dosage. It was all for nothing.

Re: Treating seizures today

You may be like I have always been. I have taken more medicine than the average person. Drug manufacturers set limits to their maxium amount. Which is why my neuros have all shook their heads when they look at the amount of meds I take. Right now I take 3-750mg of keppra BID which comes to 4500 mg a day. I also started taking an additional 200 mg of vimpat.

I try not to take anything other than meds I need for my seizures. Oh and I have A-fib too so I take a med to control the BPM so it isn't beating to fast.

Other than that I can block out pain and have gotten my blood presure down just using my mind. If you look it up we only use a small portion of our brain.

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