Hello -- new here

[Cymry]

Hope it's okay that I've joined the Epilepsy Forum, as I have only had one seizure (that I know of) and have not yet been diagnosed with Epilepsy, per se.

My first seizure (that I know of) happened two weeks ago tomorrow. I had done nothing out of the ordinary that morning -- I got up, had coffee, got ready for church, and walked to church as I do every Sunday morning. When I entered the sanctuary, I went to speak to the preacher, song leader, and choir leader, and then I went to the keyboard to warm up for service (I play before and during). I noticed a red dot in the center of my vision when I came in the church, but I thought it might just be a trick of the light going indoors from sunlight. After I played a song, I started seeing letters and numbers running vertically on the right edge of my vision, and I mentioned it to the song leader and preacher. The song leader said, "she may be having a migraine" (my head didn't hurt), and the preacher said, "let's get you to a pew," and that's the last thing I remember before waking up in the ambulance. My sister said my hands and feet were drawn in, and when she and my mom talked to me, she said I looked at them as if I wanted to respond.

My first appointment with the neurologist was this past week, and I have an EEG and MRI scheduled for next Wednesday. I'm glad I have insurance, but it bugs me that they want us to pay 1/4 of the remaining 80% on the day of the tests, like we just have the money lying around. I know that's a minor point, but still . . .

The thing that really gets me, though, is that according to the laws of my state, I can't drive for 6 months. I teach school an hour away from my house, and my husband is on disability for bipolar, so I can't just quit my job. He is going to drive me (or at least is planning to), and I can understand why not driving at least for now is a good idea, and I'm sure we'll manage, but it's just annoying more than anything else, especially since school is about to start in another couple of weeks.

I know God allows things for a reason, and He wasn't taken by surprise by this like I have, so He already has a solution laid out. I just kind of wonder why, at age 45, this has come up. I was diagnosed in October/November with both anemia and Hashimoto's (autoimmune hypothyroid), and before that, I was fine, health-wise. Weird how all this seems to be cropping up all of a sudden now.

I guess I joined here before even knowing if it really is epilepsy so I can ask questions and get feedback.

 

[valeriedl]

It's great that you joined. You'll get a lot of answers to questions you might have. People could be having the same things happening to them that are happening to you so you'll understand more about it.

I was 26 when I had my first seizure and it just came out of no where. I've had epilepsy for 10 years now and they still don't know what caused it.

One of the hardest things when having epilepsy is not being able to drive. In my state you also have to go 6 months seizure free before you are able to drive. The reason this is done is because if you have a seizure while you are driving you could cause a serious accident, possibly killing yourself or someone else. Having someone willing and able to drive you around is great.

Ask as many questions you want, you'll get lots of feed back. Nice to meet you!

 

[Cymry]

Found out a bit more this morning about what I was "doing" during the seizure. My preacher and song leader were gone last Sunday so I asked them about it this morning. They said when I got up from the keyboard, I started walking sideways (maybe because I get up and step sideways to get out from between the keyboard and bench?) and kept going sideways past the first pew before they stopped me. At some point, my eyes rolled back into my head and I went stiff as a board, and my hands and feet turned inwards. The song leader was amazed at how far inward my feet turned, with the soles facing each other, but I showed him that I can make them do that anyway (LOL). He said that after several minutes I went limp but did not regain consciousness.

 

[cadsgj]

Interesting to meet you Cymry. In my early years of seizures I too had a bad one in church, though mine was not a grand mal, just a complex partial. Mine was in the middle of the Sunday service so there was about a ten minute break in the pastors service as they got me in to their office area until I could get enough consciousness back to remember a telephone number.

I wish you the best luck in things getting quickly figured out and the best decision you can get

 

[Cymry]

Good to meet you too, cadsgj. I'm glad mine happened before church, not during. We were the only 3 in the sanctuary, and the preacher told me that while they were taking care of me and getting the paramedics in (the fire/rescue guys even came -- standard here when the ambulance is called), some of the men of the church kept everyone else outside as much as possible until I was situated. The song leader is trained in First Response, so he was able to remain calm and know what to do. Fortunately, we live in walking distance of church, so a phone call to our house got my husband and older son there quickly.

 

[Nakamova]

Hi Cymry, just wanted to add my welcome to the others'.

I just kind of wonder why, at age 45, this has come up. I was diagnosed in October/November with both anemia and Hashimoto's (autoimmune hypothyroid), and before that, I was fine, health-wise. Weird how all this seems to be cropping up all of a sudden now.

There's a chance that the thyroid disease OR the thyroid medication may be a cause of your seizures. Have the docs ruled this possibility out? Also, did they find out what was causing your bone anemia, and are you taking medications for it?

Best,
Nakamova

 

[Cymry]

The neurologist didn't really say anything about the hypothyroid or the anemia, and I listed the medicines I take and for what (I take Synthroid for the hypothyroid and iron for the anemia, with a B-12 shot once a month for the anemia as well). Maybe he wants to wait until after the MRI and EEG to see if there's anything there before making a determination. I had a colonoscopy and endoscopy on the same day back in December, and nothing was shown there, and they did biopsies as well, which were also clear, so no idea what's up with the anemia. My bloodwork on the day I went to the E.R. was fine (no sugar problems, iron was fine, etc.). I've been on the Synthroid since October and iron and B-12 since September.

 

[Grace]

Hi Cymry. I am new here too and I feel for you about the driving. My state also has a six month rule. At first I thought it was just six months, but it is actually six months seizure free here in Georgia. I was diagnosed in December 2012 though an abnormal EEG (MRI was fine). I so far have only had partial seizures, but every time I do the six month clock starts over according to my neurologist. My husband has to take me everywhere and while he is super sweet about it, I know he is growing a little tired of it. We have two children so when we go out, we all have to go out. It is a shock at first, but you will get use to it and find ways to make it work. You find out who your true friends are as well...the ones that will come pick you up Best of luck to find the answers you seek! Keep the Faith.

 

[Cymry]

Grace, I'm in Georgia too!! Hey, neighbor! *waves* It does feel a bit confining, but not too much, since I am one of the biggest homebodies ever, but school will be starting soon (I teach), and that's gonna be where the rubber meets the road, so to speak. We live in a rural area in the mountains (up near Helen) and there is no mass transit. I work down in Gainesville, an hour away. One of my fellow Pre-K teachers lives in Habersham Co., so we are trying to work out where we could meet up once school starts.

 

[Grace]

Cymry, I am just now seeing this post (sorry). I actually live in Canton right now. It's funny because prior to last year I was a school counselor for 10 years. I spent last year at home with my baby and am glad it worked out that way due to my health issues. I've lived in a couple of other states and am glad to be back home! Of course, I would be happier if it would stop raining every day! So I guess you are back in school now. I miss the kids but not the stress. Do you have a nice class so far? It sounds like you will have some good friends to hang out with while you are unable to drive. I've had a few wonderful friends who have driven over an hour to come and visit me. You do see who your true friends are when something like this happens!

 

[Cymry]

Our students start tomorrow. I teach Pre-K, so ours are very new to school. So far I have 18 registered -- a full Pre-K class consists of 22, so I have 4 more spots to be filled.

First day is always tough, especially with Pre-K. My biggest anxiety every year is getting them home on the right bus the first few days. Once we get that down, I feel better. First month is always getting them used to rules, routines, and procedures. I would ask for your prayers for tomorrow for all of us in Gainesville.

 

[Grace]

Absolutely! Prayers sent. Did you have a good first day? I remember being exhausted that first week. Try to get extra rest so you don't get sick. I'm sure you will get all of your babies where they need to be. Pre-K is a lot of work. I hope you have a para pro assistant. Once you get the routine down you will feel less stressed too. Our pre-K and Kindergarten team use to do the cutest thing the first week. They would have the words to the book "Brown Bear Brown Bear what do you see?" on signs around the school except they would say "I see the counselor's office looking at me". They would tour the school looking for the next sign to teach them where the lunchroom, nurse, counselor, office, gym, art room, etc were. The kids loved it!

 

[Cymry]

It was a good first day, all things considered. Only one student got misplaced, and she was at another school where she was sent to transfer to another bus for home. She either got on the wrong bus and was put off or didn't get on the correct one, but long story short, they kept her in the office until her mom came for her, so she was accounted for.

I LOVE "Brown Bear, Brown Bear"! Maybe we should try that once our kids get a bit more accustomed. Naturally we do have criers now and then (only 2 in my room cried today), and we have many who speak only Spanish, so it's a bit harder on them. I do speak some Spanish, but I am not in any way fluent. We have a couple Spanish-speaking assistants, but they are often stretched thin with dealing with their own classes and trying to help out with translating to parents, that I don't want to monopolize their time right at first. Our bilingual parents are very good at helping in a pinch, though, and some things can wait for a few days until the bilingual assistants become less busy.

I do have an assistant, and she's a good one. We pick up slack for each other when the other one isn't feeling well.

Thanks for your prayers! Keep 'em coming. I hope to have ours somewhat acclimated to school by the end of the week, definitely by the end of the month. Right now, for the first few days, it's just "get through the day and get them home."

 

[Intothatendlessblue]

Hello,
I'm sorry that all of this is happening to you so quickly. My prayers and thoughts are with you. I know that it can be very difficult to have this come out of nowhere. I went to bed one night and had a seizure. I'd never had one before that... but afterward... well they became a regular thing. I've lost my license as well. My state only says three months without a seizure but the side effects from my medication made it impossible for me to get my license back despite being a month over that deadline. I'm glad that you have people who can support you and help you through this tough time. If you ever want to talk, please feel free to message me. I know this is a rough time and my prayers are absolutely with you and your family as you struggle to find yourself and your bearing in the midst of all this.
-Mary