Hi out there

[jek]

My name is Jackson, and I had my first tonic clonic seizure just about one month ago. I'm 31 years old (female) and am realizing now that I've had much smaller episodes semi-regularly since I was a teenager. I've been calling those small ones "brain blinks" -- like my brain has a giant eyelid that just blinks every now and again.

I had an MRI that came out clean, but an irregular EEG. I've seen two neurologists (I wanted a second opinion!). The first recommended Keppra, the second Lamictal. It's been a month and I haven't taken anything. I've had a few small seizures since then, I think. The brain blinks, in addition to a few more muscular ticks -- like my head involuntarily jerking.

I haven't started the meds yet because I've been hoping I could try some alternative therapies first. I don't know if I've just got my head in the sand about it, though. I've been keeping a very detailed diary of my sleeping and eating habits, and then of any seizure activity. It seems too soon to come to any conclusions, of course. I just want to learn as much as I can about this before making a final decisions. In the meantime, I'm doing my best to be safe -- not driving of course, no ladders, etc etc. Anyway, I'm glad to find this forum and look forward to learning a lot from y'all.

 

[RobinN]

Hi Jackson -
Welcome to CWE. I think you have come to the right place for alternative ideas. I think (yes my opinion only) that you made the right decision not to jump into meds right away. Keeping a diary is a lifesaver for me, so I am sure you will gain a lot of insight from keeping one.

We have tried four meds for my daughter and none were satisfactory, so we are holding steady with nutritional changes, supplements (just raised magnesium level to 1000mg), and bio-identical hormones (her body was producing progesterone which calms the brain while estrogen excites the brain). I am also doing research on neurofeedback.

I know there is a ton of good reading material for you to keep you busy for sometime. If you have a specific question for anyone, don't hesitate to ask away.

 

[Nancy]

Hi Jackson ~ You sound like a very intelligent person taking the right steps. Good for you! But I do hope you're "safe" without the correct meds. (Whatever is correct?)
I guess that's because I've been swallowing all the wretched meds for so long I'm addicted.

I'm glad to meet you and I wish you the best.

 

[skillefer]

Hi jek!
I'm 36 and female, and also have grandmals. The difference is, I started having mine when I hit 13 and started puberty. So you may want to keep a track of your cycle as well as your diet and sleep. Talk to your doc and ask him to test your hormone levels, as well as testing your blood to find out how your vitamin and mineral levels are. A lot of people here are actually taking Magnesium, Vit E, B vitamins in order to reduce seizures. And having those tests done will at least give you more information. Try to see what your triggers are. Mine are sleep deprevation, stress, strobe lights, and low blood sugar. Read as much as you can, and ask plenty of questions. This group is really friendly and good at answering questions, or directing you to good resources for info. Also...if you don't already have kids, and you think someday you might, make sure to tell your doc. Some medications aren't good to get pregnant on. And although you may not be even thinking about it right now, just remember that someday, you might want to have a family. As for meds, they aren't all bad. I'm taking phenobarbital. It's one of the oldies of medications. I used to take a combination of Depakote and Phenobarbital. Eventually, I didn't need to take the Depakote anymore. Just understand that if you choose to take meds, you're going to be a bit groggy for the first week or two, as your body takes time to get used to them. Welcome, and feel free to ask any questions.

 

[jek]

Thanks so much for the warm welcome. I know I'm going to have about 8,000 questions in the coming months. I will definitely keep track of my cycle as well -- and the tip on hormone levels and vitamins is very helpful. I'm not currently trying to get pregnant, but am hoping to in the next couple of years. My doctor knows about this.

My first question will be a little vague, but here goes...I've only had the one tonic clonic, and I blacked out before I noticed any auras. So now I am hyper-aware of every funny feeling...I'm wondering how you've approached working out the difference between feelings of anxiety versus a potential aura. Does that make sense? Sometimes, I get myself so worked up worrying that I'm about to have another seizure, I know that must be playing a role in how I'm feeling physically. Also, how much has my constitution really changed since having this seizure? I feel so fragile these days, but I didn't at all just two months ago.

 

[skillefer]

Hi jek!

I never have auras. I've never had auras. Honestly, you're probably being hypersensitive and that's just putting you under more stress. You need to try to get a relaxation routine. Maybe try yoga, or a stroll after work, or meditation. You need to learn relaxation techniques. For alot of us here on the forum, stress is our major trigger. So the more you stress about having seizures, the more likely you'll be to have one. Make sure that you don't take any unnecessary risks (such as swimming by yourself), but try to get into a routine that builds you up in every way (spiritually, emotionally, physically) and helps you to relax and deal with stress. I wonder if your feeling of fragility is due more to the fact that you did have a seizure, and now your looking at your health, body, and mind differently?
ANyway, hope this helps....and let the questions begin!!

 

[epileric]

Welcome Jek (or is it Jack?)

I haven't started the meds yet because I've been hoping I could try some alternative therapies first. I don't know if I've just got my head in the sand about it, though. I've been keeping a very detailed diary of my sleeping and eating habits, and then of any seizure activity. It seems too soon to come to any conclusions, of course. I just want to learn as much as I can about this before making a final decisions. In the meantime, I'm doing my best to be safe -- not driving of course, no ladders, etc etc. Anyway, I'm glad to find this forum and look forward to learning a lot from y'all.

There's a lot of discussion about alternative treatments here. What I've learned is that I can't really use 1 treatment to stop my seizures, I have to be careful of my whole lifestyle, not sleeping to little or too much, eating well (that's hard with a sweet tooth like mine) & just knowing my body well enough to be aware of what concessions I can make.

I don't blame you for trying to avoid medications. I hate them myself but had to learn the hard way that for me they are a necessity. It has become a matter of balancing what medication(s) gives me the least side-effects but minimizes my seizures that maximizes my productivity & happiness.

My first question will be a little vague, but here goes...I've only had the one tonic clonic, and I blacked out before I noticed any auras. So now I am hyper-aware of every funny feeling...I'm wondering how you've approached working out the difference between feelings of anxiety versus a potential aura. Does that make sense? Sometimes, I get myself so worked up worrying that I'm about to have another seizure, I know that must be playing a role in how I'm feeling physically. Also, how much has my constitution really changed since having this seizure? I feel so fragile these days, but I didn't at all just two months ago.

I find when I get an aura it's very obvious to me that it is something unnatural for me. I've had seizures all my life so I'm pretty familiar with my personal symptoms.
Everyone is different to some degree so keeping a diary is a great idea to familiarize yourself with what's happening.:tup:

 

[brain]

:hello: Jackson!

Welcome to CWE! I can see quite a few
folks have already responded to you,
scroll around and you'll be bound to find
all kinds of responses and replies all over!

 

[Bernard]

Hi Jackson, welcome to the forum. :hello:

The "brain blinks" sound like absence seizures. My wife completely eliminated her absence seizures with EEG neurofeedback. I highly recommend it.