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RachelinAZ

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Hi, my name is Rachel. I am... almost 42. I started having known seizures around the age 21 (known seizures, I wonder if I had them before, but perhaps petite ones?)

I read something, somewhere recently how Vitamin D could be (lack of) associated with seizures. I've had extensive testing and we've never been able to pinpoint why. A lot of could be's. I have no issues with the brain it'self according to Swedish Medical Center.
My doctor here in Arizona (born and raised in Alaska), wants to recheck my brain and how it's working, see if anything has changed over the years. It's scary NOT knowing what causes the seizures. :/

Non-medical facts:
Mom to 3, oldest is almost 21 (first KNOWN seizure was 4 months after I had him), youngest is 3 (last known seizure she was.... 3 or 4 months old). I was born and raised in Alaska, moved to Arizona and love photography :)


 
Hi RachelinAZ, welcome to CWE!

I hadn't heard about a possible Vitamin D connection, that's interesting. Given that your seizures started with your first child and stopped with your last, do you think you might be sensitive to high/fluctuating levels of estrogen? That's a common trigger for many folks.

Best,
Nakamova
 
Nakamova: No, I would think so too, but I've had appx 30+ seizures and I know I don't have 15 kids LOL. They did check for that, but again, nothing came up.

I wondered stress (once you hear my full stories, you will know why, but one was my first date w/my husband, once, the birth of my son, two were from my husband losing his job, none from my second child, at least 3 with my third child (I am thinking of major events to tie them into.... others I don't remember).

My current doctor wonders if I am still having petite seizures. My old doctor said brain damage happens with every seizure and feels I have had both short and long term issues. My current doctor wonders if I am having petites.... because I still have short term memory loss.
Drives me crazy!!! I can have total conversation on a phone, and not remember any of it. Or texting someone, the next day, have no clue of any of it.
 
This is something I JUST read in the last day or two. I may have found it here :) I am on 50,000mg 2x a week to try and get my levels up.

Shoot I had 2 links, but I can't post them...
 
Newbies aren't allowed to post links (it's an anti-spam safety feature). You can spell them out though.

Stress is definitely a major trigger too. I had my first seizures just after the end of a 10-year relationship...

Have you had a neuropsych eval done? That can sometimes be helpful for flagging specific problem areas of cognition and/or memory, and coming up with strategies or workarounds. It can also set a baseline to measure any future changes against. Both meds and seizures can affect memory, so it can be tough to know where to start.
 
Here you go, links below:

http://www.livestrong.com/article/27...-d-deficiency/
http://www.vitamindcouncil.org/healt...ions/epilepsy/

I had heard about the D deficiency that can be caused by anticonvulsants, but not the data about fewer seizures on sunny days. I wonder if that applies to all seizures, or just tonic-clonics. I believe all it takes is 15-30 minutes of sunshine before your body absorbs all the Vitamin D it can convert to use in the body, so it seems like a sunny day wouldn't make that much difference. On the other hand, Seasonal Affective Disorder is a very real phenomenon, so our brains and bodies are probably vulnerable in ways it's hard to predict. I get plenty of sunshine, but even at the peak of summer my Vitamin D levels are low...
 
What is neuropsych eval? I had 21 day testing at Swedish in Seattle back in 2000/2001? (can't remember the exact date) but I never "triggered" one. Who would (IF it was stress related), if your kicked back, eating some pretty good food (amazing), and watching TV. LOL.
They tried triggering several different ways and nothing showed up in their testing (a bunch of cords hooked up to my head).

They wanted to do another 30 days, but I didn't have that kind of time off of work. :(
 
Hi Rachel, I want to welcome you to CWE.

This forum was made out of love by Bernard for his wife Stacy. That love permeates throughout the whole forum.
 
Welcome!
Wow, a 21 day EEG? I had a 4 day EEG once. lol.
A neuropsych eval is kind of like a cognitive testing thing- to test your ability to process things and remember things. I had one done a few years ago. It was pretty interesting, actually.
 
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Rachel I live in az as well first person iv run across.sorry about ur situation and welcome to cwe everybody is real cool and nonjudgemental
 
Hi AC!

I am in Mesa, where are you? I haven't seen a neuro down here yet, but it is on the list (I've found so many other things "wrong" since moving from Alaska including the Vit D deficiency, I can not retain iron and an almost non-acting thyroid.

YES! 21 days. And nothing triggered. The doctor told me I was having panic attacks (severe ones), however, thank G*d! for my neuro in Alaska, who tested me after each one there, and SAW, YES they were grand mals. I had to have the Swedish doctor call my Alaskan doctor. I was so frusterated. :(

Krista:I've only been asked by paramedics right after a seizure (which I had NO memory). I have lost the first two years of my oldest son's life :( bits and pieces, but even photos do not trigger.
I am slowly losing memories of my sister and mom (who passed away in 2010 and 2008), and that is hard. And if I hadn't had such weird birth stories w/#2 and 3, I believe I would have forgotten their first two years too :( I swore Aiden's birthday was May 28th for 3 years :( it is the 25th.

I'd be curious (and kind of scared) to see what that type of test would bring up! How much of my memory (short and long term) have I lost.

Ruth, I love the idea behind the forum (the love, not the seizures). <3
 
Rachel I lived in mesa til last yr moved to camp verde by sedona.and neurologists aint da best u have da mayo clinic and I was at barrow neurology one of da best clinics couldnt help me now its trips to tucson for epileptologists.u want things done in this state gotta much em a little
 
Hi Rachel and welcome. This is a great forum with so many wonderful people.

MaryK... sounds like you have found some instant AZ friends..
 
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