Jenna - simple partial seizures

[Jvere]

Hello all!
I've recently been diagnosed and have been having a bit of trouble reconciling it I guess.

I live in Alabama, am a single mom of three kids and am working on a bachelors in biology. I had a mean case of meningitis 9 years ago and the presumption is that it has left me with the simple partials. I think the thing that chaps me the most is that I waited 9 years to decide I needed help.

I had been thinking all this time that it was my fault-- I drink too much, eat too much sugar, am depressed, am anxious, etc., etc. and that if I told anyone what I'd been experiencing they would think I was crazy!

So, good to know I'm not crazy! Well, not much anyway.

So let me throw something else in here too. I have synesthesia as well. If you've never heard of synesthesia I'm not surprised. It won't let me link you to my blog where I've described synesthesia, but a google search will produce good results. Synesthesia, basically, is a blending of the senses. It is when two or more senses are experienced at the same time.

The reason I mention it is because I am interested in finding other synethestes who also have these types of seizures. And of course I would like to hear about what the seizure experience is like for those who don't have synesthesia. Because my synesthesia is amplified during a seizure, I cannot possibly imagine what the experience would be like for those who don't have syn. But the descriptions I read of certain seizure types seems to me that the seizure itself produces synesthesia.

All right, that's probably enough rambling. I just wanted to be totally up front about my motives for joining this forum: I want to read and tell about our unique experiences and I want to get detailed descriptions of simple partial seizure experiences. I've enjoyed browsing the "rooms" and look forward to reading more.

Thanks!
Jenna

 

[Nakamova]

Hi Jenna --

Welcome to CWE!

It makes that synesthesia would result from a seizure. When doctors stimulate different parts of the brain, it can produce all sorts of unusual sensations in the patient. There's a part of the brain that when stimulated produces an out-of-body sensation, another that generates religious feelings, etc. I don't experience synesthesia myself, but I do find it fascinating. The idea that you might "hear colors" or "taste sounds" is amazing. I look forward to your posts about this.

If you don't already, I recommend keeping a seizure journal, not only to track the sensations you're having but also to look for potential triggers. The meningitis may have been the primary cause of the seizures, but there can be secondary triggers that push you over the threshold. Things like fatigue, low blood sugar, hormones, flashing lights, gluten -- there seem to be a variety of stressors that can lower seizure threshold, and people are often sensitive to more than one.

Best,
Nakamova

 

[dfwtexas]

Hi Jenna, welcome to our group!
I have never heard of that...but there is so much to learn about differences in seizures. I had a severe trauma to my arm in accident 4 years ago. Two years ago, I started having simple and complex partials. They believe it was combination of the many infections and/or the antiboditics to cure them that did the damage in my partiel lobe
jenn

 

[Endless]

Hi, Jenna. Welcome!

I saw a program on public TV on synesthesia. It focused most on people who could see/taste numbers or music - it made them into math and music geniuses.

What an interesting type of seizure to have. We hear all kinds of seizure types in here. There's bound to be someone in here that shares yours.

In the meantime, I'm so glad you saw a doc and you are getting treatment after all this time. I felt like you did when I was diagnosed - hard to come to terms with but so glad to hear I wasn't crazy!

 

[grateful7677]

I was a psych major and I had never heard of synesthesia unitl the other day when I was reading a book called Lost and Found - Marilyn Harris, bery interesting. I also have partial seizures, usually complex, but just had 3 tonic clonics the otherday on keppra...what are you on?

 

[Endless]

I'm ramping up on Trileptal. My 4th drug tried. Taken off others due to adverse side effects and/or allergic rash.

 

[Blondie47]

Hi Jenna,

Welcome to you.... this is a wonderful community for information and support! :e:

 

[Jvere]

Thank you everyone!
I had never heard of synesthesia either until I was an adult and read an article describing exactly my perceptions! You can imagine how eerie it was!

I guess I am wondering whether all seizures produce synesthesia or whether my syn is amplifying my seizures. It's only a matter of curiosity, as it will have no bearing on my treatment.

I started out on Lyrica but was so tired of being a zombie and getting suicidal around my period. So, the neurodoc gave me Lamictal and told me to keep taking the Lyrica for one week.

I finished the week of Lyrica, so that I was now only on Lamictal, and two days later I was worse than ever before. It was unbearable! I put a call in to doc, but didn't get a return call so I just went back on the Lyrica. Now I feel fine and am waiting for the week to start again so I can consult with neurodoc.

Thanks again for the welcome! I look forward to getting to know everyone!

 

[Endless]

Hi, Jvere,

I don't think ALL seizures produce synesthesia. My seizures don't create it - I don't have synesthesia at all. I find it highly interesting, though. It would be interesting, just once, to taste "100." Don't think I'd like it as an ongoing phenomena, though.

Endless

 

[Loopy Lou]

I was a psych major and I had never heard of synesthesia unitl the other day when I was reading a book called Lost and Found - Marilyn Harris, bery interesting. I also have partial seizures, usually complex, but just had 3 tonic clonics the otherday on keppra...what are you on?

Just hi-jacking to say that i LOVE that book I've read it so many times. :hj:

Jvere - Welcome to CWE! Synesthesia seems to be a very interesting subject...

Anyhoo loadsa people here to talk to, they're pretty nice folks

 

[Topcat]

When I have an SPS I have a weird sensation like a leon taste. It is very strange.

 

[Crystal11]

Hello. My twin sister and I have complex partial seizures as well as Synesthesia, CVI/Cortical Vision Impairment and profound hearing loss. For me and my twin, we compose music but also see patterns and colors with each song. Numbers have colors and smells have textures and its annoying. I don't notice much during my seizures but I'm guessing its due to the loss of awareness etc. Synesthesia means to awake while anasthesia means to put to sleep.
I can remember in college, my next door neighbor had made something in his microwave that smelled really bad. When I walked out into the hallway, I could "feel" fish scales on my hands- no other person could feel them, just me.

Synesthesia actually comes in handy sometimes with phone numbers, addresses or months of the year.
April is golden-rod/orange-yellow, May is red, December is blue, January dark green, August is light pink etc lol.

If something is not the color I expect or know, it makes it harder for me to notice or remember. This number look like this to me 5230: red, dark blue, pink and white.
My Twin sister has her own set of number-color codes and we argue lol sometimes about which numbers are which colors.

As far as our music, if I draw out the design on paper, using colors and patterns, I can play it back just like sheet music LOL. We have been composing music for a long time, since age 6-27 now.
I am thinking about puting the peice of artwork for my songs, up on youtube then record the video/song hehe. just a neat idea that most would probably think its weirdo but anyway..
I don't know if this is related but we see the number 11 every where, everyday and its so annoying!

Ok, take care
Its neat to find someone else with Syn and E!
Crystal and her guide dog Umbro