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Rouxlette

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Hi, I am a 68 year old woman who was diagnosed with a seizure disorder in early December.

I had surgery to correct an aortic aneurysm in June 2017. Because the 5.5 centimeter aneurysm ruptured and because it was high on the arch where the vessels branch to the brain, my operation had to be performed off the heart lung machine, packed in ice with my body temperature lowered to 50 degrees. I was in that state for over 1/2 hour. After making it through that part of the surgery, when it was time to start my heart again, it didn't for a significant period of time. And then it did. Because of all of this I had to work hard to be able to talk again...but I did.

It took until December for the docs to figure out that I had a seizure disorder. I guess the problem with absence seizures is that you are absent at the time. All I knew was that I would miss a few seconds and then have a powerful urge to sleep.

Through trial and error have realized that blue light is my biggest trigger. Have turned everything with a screen in my life to nighttime. Have ordered a blue light screen for the laptop, and blue light blocking glasses but have not received them as of yet.

Had a rather incapacitating seizure in Office Depot a couple of weeks ago. After I came back mentally, I noticed that the cash register (where I was at the time) was next to a bank of computers and monitors for sale. I noticed the huge florescents hanging from the ceiling. I realize that shopping trips were going to be a real issue for me.

Any suggestions? I'm open to anything that isn't hideously expensive and that doesn't involve just hiding in my apartment. I realize that Office Depot has mail order, but I'd like to be able to visit the grocery store without fear. Blue light from computer gets to me within minutes. Florescent lighting has always been a migraine trigger as well, so I guess light sensitivity is no surprise. If I have other triggers I have not identified them as of yet.

Interesting factoid: My cat appears to know when I'm about to have a seizure, comes to me and starts tapping my arm. Took me a little while to realize she was actually doing this...but she is. Good kitty!

Wish we weren't meeting under these circumstances...but nice to meet you all!
 
Should have said:

I started on Vimpat 100mg per day and am now on Vimpat 200 mg per day.

Have taken Dopamax, Neurontin and Depakote previously as migraine prevention. Didn't help. Made me so doped up that I refuse to take any of those again.
 
Hello & welcome to the site. It helps a lot if you know what triggers (or might trigger) your seizures. Keep track of the seizures you do have. Both of these things will help you & your doctor make better medication choices.

I get simple & complex partials. Unfortunately, have been on just about every AED available. I still get breakthroughs despite currently being on 3.
 
Hi Rouxlette, welcome to CWE!

I hope the light-blocking glasses do the trick and make it safe for you to be around the offending lights and screens. Keep us posted on how well the work for you. You might be interested in this site: http://irlen.com/the-irlen-method/ where they specialize in lenses and filters to help with sensitivity to bright and fluorescent lighting and glare.
 
Hi Rouxlette,
Welcome to CWE! I've had absence and complex partial seizures for over 45 yrs. and before I had brain surgery certain colors would trigger seizures for me. My Epileptologist did a special e.e.g. on me where they flashed different color strobe lights one at a time and they were able to find that fluorescent green, amber and bright white like when the sun shines on the snow were the 3 main colors that triggered seizures for me. When certain colors trigger seizures for a person this is called "photosensitive".
Just like you I take vimpat and it has worked the best for me along with medical marijuana (CBD oil). I also cut myself back on the carbs and starch foods because they can trigger seizures for some people. Here's wishing you well and May God Bless You!

Sue
 
Hello & welcome to the site. It helps a lot if you know what triggers (or might trigger) your seizures. Keep track of the seizures you do have. Both of these things will help you & your doctor make better medication choices.

I get simple & complex partials. Unfortunately, have been on just about every AED available. I still get breakthroughs despite currently being on 3.



Thanks Sabbo. I sure agree and started actually logging the seizures that I’m aware of, so that I can identify triggers. So far it’s all about the blue light emanating from computer screens and phones, fluorescent lighting, and I think perhaps led lighting as well. I live in Seattle so I don’t know yet what sunlight is going to do.


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As a lifelong carb aficionado, it’s worth a test run. One never knows! I plan to start CHD oil as well. I wonder if anyone has tried traveling with cab oil. I suspect that’s one to use when I’m safely home in Washington


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