It's Late & As Usual I'm Not Asleep Yet

[thecatcameback]

Glad I found this place! I live in Chicago and I can't drive anywhere. It's not a good idea for me to go out alone so here I am online looking up more about this condition I'm in.

I finally gave in to admitting that I have Epilepsy. I let go of that balloon of denial. I held onto it in times like, when I finally in my life had the money to buy a cool car, and then my effing seizuring head wouldn't let me take the wheel. Oh, I could, and I did, at a major risk. Enough said.

I have complex partial seizures. I go into unconsciousness. I have them about every 7-10 days. The seizures have gotten worse over the 17 years since I had a traumatic brain injury from falling and bumping my head on something. I was partying, drinking wine with a friend. I don't remember it much. I got a concussion and was in and out of consciousness but I didn't get to the hospital for a couple of days. By the time I went there was blood coming out of my nose. I stayed in the hospital for 6 days once I got there. It took me about a year to be able to put a whole sentence together and stop drooling.

I've taken a number of medications since then. Dilantin they gave me shortly after I first left the hospital. I stopped taking it though for several years and maintained with very few seizures. By 2009 when my seizures started getting worse I was hospitalized and I given new drugs. I tried Keppra. That was no good. Then I was on Lamictal & Topamax at extreme dosages that worked for about 10 months. I was driving it was great. But the drugs were giving me UTIs. I'm now on Lamictal, Zonegran, & Vimpat.

So now it has been determined the dosages that I'm on now aren't really working. I've been on the Ketogenic Diet since February. It worked for about 7 weeks. That was cool. Then I has a cluster of seizures in a weekend.

This is getting really bad. I'm going to go through the tests for left temporal lobe surgery. I just spent a week for an EEG video. They finally caught a seizure. This was my 4th time. I'm getting set up for a WATTS test, the neuropsychology test, God knows what else. They may do two surgeries to determine if they need to remove my hippocampus. I'm concerned if that includes the amygdala and how many of my awesome personal features that will remove. Time will tell. I'm looking for information, and experience from others about surgery.

I'm also interested in knowing if there are any other alternatives. Is there anything else to try before I allow them to drill into my skull? This is something that can't be reversed!

Thanks for letting me have a place to express myself!

The Cat Came Back

 

[Cint]

I had a left temporal lobectomy back in 1990. I went thru all the pre-testing with the WADA, etc, too. The surgery itself went well, but I was only seizure-free for 14 months. I was having only CP seizures before surgery, but when the seizures returned, I started having CP + TC seizures, too. There are others, tho, who have also had it done more recently and have had better results. There are other options to brain surgery. After having the brain surgery and then trying many meds, the VNS became available and that has helped me control seizures better than anything. What works for one, may not work for someone else.

Here are websites with more info on Lobectomy and the Vagal Nerve Stimulator:

http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/surgery-expectations

http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/types-surgeries

http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/life-after-surgery

http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/vagus-nerve-stimulation-vns

And more info on the VNS go to this website:
http://us.cyberonics.com/

 

[arnie]

Hello and welcome! It can be very frustrating to find something that finally works. I've had epilepsy for over 30 years, and have been on five different meds with limited success, and also had a go at the vagus nerve stimulator, which Cint mentioned. If you would like to read about my experience with that, here's the link:

http://www.coping-with-epilepsy.com/forums/f23/my-vns-experience-22263/

In addition to my personal story relating to that there is a lot of info on vns. Unfortunately I am one of the 30% of people that it did not work at all for, and the device is turned off now, possibly for good. What finally seems to have done the trick for me was deciding to take my medication (lamictal) 4 times a day instead of two. That allowed me to have a higher dose without side-effects. I have gone from 400 to 650 per day. I've now been seizure free and side-effect free for over 6 weeks, which is the longest period I've been without seizures since I was diagnosed 30+ years ago. In spite of what the literature says, and what doctors more or less blindly (in my opinion) follow, 4 time a day dosing can have a huge impact on things, especially if you are a fast metabolizer of drugs, which many people are. That is also not something I had any of my docs mention. It was finally my pharmacist and I who got it worked out. I told my epileptologist what I had done and she gave it her blessing. I've gotta say I'm ticked off that she didn't seem to know anything about all that and that I had to essentially figure it out for myself.

One final thing that was also a huge part of my changes: Tracking my seizures on Seizuretracker. I have always encouraged people to keep a record of your seizures (date and time) but a step beyond that is to enter them in the tracker so you can generate reports and see what patterns may emerge. Here's the link:

https://seizuretracker.com/

Keep us posted, and best of luck!

Cheers!

 

[Cint]

What finally seems to have done the trick for me was deciding to take my medication (lamictal) 4 times a day instead of two. That allowed me to have a higher dose without side-effects. I have gone from 400 to 650 per day. I've now been seizure free and side-effect free for over 6 weeks, which is the longest period I've been without seizures since I was diagnosed 30+ years ago. In spite of what the literature says, and what doctors more or less blindly (in my opinion) follow, 4 time a day dosing can have a huge impact on things, especially if you are a fast metabolizer of drugs, which many people are.

I've taken my meds 4 times a day for 20 years now, so I cannot believe your dr. never told you about it. Of course, I've been seeing an epileptologist now for 20 years, ever since my seizure started again after brain surgery.

 

[arnie]

My epileptologist didn't tell me about it four-time-a-day dosing. She also didn't know about face-blindness, which is not uncommonly associated with temporal lobe epilepsy. She also knew nothing about Seizuretracker and didn't seem familiar with fast metabolizers of drugs. She also thought that if you used the magnet for more than a few hours to turn off the vns it would reset everything, which I knew not to be the case, and confirmed it by talking to one of the Cyberonics techs, who assured me that there is no maximum time off. When we were still trying to see if the VNS would work she wanted to start me on Vimpat, which would have thrown another variable into the situation and made it hard to tell if the VNS was going to work, and if any side-effects were from the vns or the Vimpat. 'You can see why I am not longer really impressed with having an epileptologist. SOmeday I would like to have a doctor who knows more than I do about every aspect of my treatment.

 

[Cint]

'You can see why I am not longer really impressed with having an epileptologist. SOmeday I would like to have a doctor who knows more than I do about every aspect of my treatment.

Yes, I can see why you're not impressed about your epileptologist. I find that unreliable if she calls herself an epileptologist, especially if she doesn't know about face-blindness and didn't know much about how the drugs are metabolized. Hope you fired her.

 

[arnie]

I'm not going to fire her. I don't know if I could find anyone better, and at this point all I need her for is to make sure my prescription is kept current and to update it for me if I tell her I'm going to change something. Also, if I ever decide to turn the vns on again I will need her to activate it for me.

It's still kind of ironic, isn't it? In my business as a bicycle shop owner and bike mechanic I know more about bikes than 99% of my customers, and that is how it should be! It's too bad that I can't expect the same from my doctors. Oh well. Life goes on! Gotta get to work and get two more bikes fixed up ASAP!

 

[Nakamova]

Hi The Cat Came Back, welcome to CWE!

It sounds like you've tried a number of approaches, including dietary ones. Do you think the breakthrough seizures on the keto diet were a response to specific discrete trigger or a sign that the diet is of limited benefit to you? As Arnie mentions, it can definitely help to track seizures and look for triggers and patterns.

CWE members have taken a variety of steps when seizures become refractory, including the VNS described above. As Cint mentions what works for one person may not work for another. Surgery has helped some folks but not others. Whatever next steps you take, make sure to ask a lot of questions so that you are comfortable with your choice.

Here are few links to check out:
http://www.cmaj.ca/content/172/9/1175.full
http://www.coping-with-epilepsy.com/forums/f41/almost-time-11741/
http://www.coping-with-epilepsy.com/forums/f20/epilepsy-surgery-success-story-14850/
http://www.coping-with-epilepsy.com/forums/f41/anxiety-after-brain-surgery-22060/
http://www.coping-with-epilepsy.com/forums/f41/great-articles-epilepsy-surgery-22471/

 

[thecatcameback]

Thanks for all the replies. This is awesome all the information under one roof. I've spent hours looking stuff up with no connection.

Oh yeah, WATTS is the tower, WADA is the test.

I hadn't read a lot about the VNS. I mostly had seen complaints about it. Frankly I don't think I could stand having a "device" on my chest.

I guess you could say I've been pretty immature about any offer for relief. Like I said I went without drugs for a long time. Do you think that made me in a worse condition?

I still just keep thinking I can wake up one morning and the seizures will just go away. I'm tired of having to take pills all the time. I hate the side effects. I don't think I would be this forgetful and speech impaired - at a loss for words. I'm ok at writing, sometimes. But I guess it's rude to spend all my time just whining here on the forum.

To Nakamova: The Ketogenic Diet is pretty cool. I think the seizures happened for a few reasons. I was losing track of my fat intake and eating too much protein. I was stressed because I had taken on an awesome but overwhelming art teaching job for 8 weeks. Plus it was getting to be really hot weather. I've been really steady and careful with the diet since then, but the seizures have continued. I have a friend who says to continue for 2 years before I give up, not to jump into surgery until I give it more of a go, but I'm really getting sick of this.

I want to believe the surgery will make it all go away. I've seen videos of people for whom this has happened. Then I've seen people who write on forums like this or epilepsy.com who can barely write saying how great they are doing. And then there are some dismal videos on youtube.com.

My neurologist/epileptologist says I would have to continue some drugs for 2 more years. They have to see how deep my seizures go by wiring my head and running an EEG on my hippocampus. This is after they figure out if it's worth saving. The they'll perform a second operation to remove everything. This sounds dismal. Would I have any hair left on the left side of my head? Would there be a massive scar? It better work after all that. The surgeon has been doing this for a few decades...

 

[DHMary]

Keto for my wife had nice 17 days no seizure then a cluster. Now each seizure is during or just after exercise . Hydrating and less acid. Ck it out. Human growth hormone? Oxidative bursts? Lactic acid? We are seArching. She is not a good candidate for surgery. Both sides of brain fire!


Sent from my iPhone using Tapatalk

 

[thecatcameback]

Sorry keto wasn't the greatest, at least yet, DHMary. Some folks say to give it time. I'm still on it. I haven't had a seizure for 12 days. Keto and 3 meds.

I did an alkaline less acid diet last year I lost weight and my seizures sort of got worse, is that what you're talking about with "Hydrating and less acid"?

I'm sorry you are not a good candidate for surgery. I guess I am grateful that I am. Considering brain surgery is not something I ever expected to see myself doing but I've painted myself into a corner now. I don't have any options left to make the seizures go away. Drugs are just making me more "effed up". I actually like the diet, but I think my brain is used to it, just like it gets used to the drugs. It's a monster and never gets enough. Can you imagine? I have a separate existence from this organ in my head called a brain that will stop at nothing to drive me nuts with seizures.

 

[cuppycake21]

Hi Cat -

Please take all other measures before surgery. I attended Andews-Reiter Treatment Center in California about 12 years ago. While I don't know if they are still in practice, they were extremely helpful for me. They come from a cognitive behavioral perspective. Dr. Donna Andrews has her PhD and she herself has Epilepsy after a case of Spinal Meningitis. She had to learn everything over again, but was left with many seizures a day. She eventually remapped her brain and as far as I know she still hasn't had any seizures since the late 60's or early 70's. She works with neurologist Dr. Joel Reiter. Their approach is "alternative" .. a word that strikes fear into many people. But they try to track down the source of the seizures. It sounds like you know the source, considering that there is a very evident before and after. But they have had success with people who have had injuries. My seizures aren't perfect, but I stopped following through on the work that I was doing. I can say that I am vastly improved. I don't know what your financial situation, if you are able to travel to California but again, I wouldn't suggest the treatment to any other person had I not had a good experience myself. And no, I don't receive any benefit for suggesting it. The reason I felt compelled to share was because you are considering surgery. I don't want to provide a scare tactic, as surgery might be a good solution for you. But I want to share something that happened during my treatment / advisory sessions. Near the end I mentioned that my doctor was advising surgery. I even went through an inpatient video EEG session to determine in which area of my brain the seizures originated. From all of my recall of twitches / tics, etc everything outwardly started on the left side. So I felt it began in the right side of my brain. My Doctor videotaped only one seizure and decided that they had a focal onset in the LEFT side and immediately generalized. I disagreed and didn't pursue surgery. Andrews-Reiter looked at all of my MRI's, every EEG and conducted their own EEG. They found, as I thought, that the onset was in the right side of my brain. The Doctor would have literally operated in the wrong spot. After this discovery one of the doctors shared a story with me. A teen boy was brought for treatment by his parents. His Epilepsy had been severe and he had surgery. They concluded that the surgeons had taken so much tissue that their treatment could not be of benefit. Very sad. At any rate, I wish you much healing and success with whatever treatment you choose. HUGS - CuppyCake21