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Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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Hello,

I've posted a few times but am now going to introduce myself. I've enjoyed reading your very helpful, informative posts. This is a great website and I hope to be able to contribute.

I am a Midwesterner, born in Minnesota, where I lived in several parts of the state. A few years ago, I was getting very ill, and my darling husband was offered a position in his company in South Dakota. We moved there and I love it. It's a beautiful state with lots of big, empty spaces that appeal to my love of nature and painting. It was great timing on the Lord's part as He knew I wasn't in very good shape. My husband's promotion allowed me to close a very successful interior design business and to begin my lifelong dream of oil painting. With the sale of our home of many years, we were able to just purchase a property in Arizona where we hope to spend part of each year. My husband is older than I and hopes to retire within the next 5 years. The warmth of the winter in Arizona is very appealing to me as the cold weather is hard to endure in the midwest.

But, back to the medical things. My history is long and boring, so I'll sum it up. I had ovarian cancer at the age of 17. It was found because I fell coming home from the cafeteria in college and hit my head. They found a large tumor in the ER on a routine exam. Thank you, Lord.

Life went on and then I had either encephalitis or a stroke at the age of 26. I lost my memory for a month, had pneumonia and was a very sick woman. Immediately after that I started having more migraines, (the first was when I was a kid...terrific headaches that lasted at least a day) so that I felt as though I was hit in the head with a 2x4 and was knocked to my knees. This would happen daily and often throughout the day. The medication kept things at bay with migraines at least a few times a month.

Then, about 10 years ago, with the rigours of a lot of stress from a very intense profession, I just depleted all my reserves and started waking up feeling as though my head was used as a punching bag all night. I kept at it, and worked even though I was deteriorating with increased memory loss, daily headaches, these odd movements of my extremities that soon went to my entire body. I couldn't sleep and life just got worse, especially after a couple of car accidents which were pretty severe (passenger, thank goodness and I was the only one hurt).

It was a true blessing that I was able to work as a bank manager in my earlier years, then as an interior designer for 14 years. I worked hard and endured a lot of stress. But, I was fortunate to put my kids through the schools they wanted to attend and to even travel. Finally, it all came tumbling down, and after a spinal surgery to fuse my ignored neck I asked my ortho doc when these wierds movements would end. Well, how surprised was he to learn I'd had them for a few years and I never mentioned them and how surprised was I to learn they were not related to my back issues. So, off to the neurologist we went at my ortho docs insistence, where they discovered a cyst in my left temporal lobe. While the neuro doc doesn't think it's the cause of my seizures, it's odd that the seizures seem to center around it.

The neuro doc also thinks my seizures have likely been going on since I was a kid and certainly since my stroke or encephalitis episode and memory loss.

The doctors don't know if there's an underlying reason for the seizures but all the mri's and eeg's etc. confirm them and I have several types.

So, I know I am very fortunate to have done as well as I have and that upon reading so many of the stories here I have a very blessed life. I am so grateful for all that the Lord has given me because from each experience I have learned greater compassion for others and appreciation for all I've been given.

I hope to be able to share, contribute, help, just as you all have done for me already.

Blessings to you all, thanks for letting me join the club. :)
 
Hey ArtistinArizona, welcome!

You've found a great club indeed, and now that you've joined we can show you the secret handshake and all... It sounds like you've had a lot thrown at you, including epilepsy. My guess would be that the encephalitis was perhaps the original cause, especially since your migraines commenced soon after. I hope that you feel free to share more of your experiences and to check out all the forums here -- we've got places to vent and laugh as well as forums to share news and post questions.

Best,
Nakamova
 
Hi AA, welcome to the forum. :hello:

Are you well controlled now, or still experiencing migraines/seizures?
 
Welcome to our exclusive club! This is the best place to find a wonderful group of supportive friends who are so helpful.
I got diagnosed 2 years ago at age 47. I had a severe trauma to my arm which was followed my multiple infections. I had a port in my right arm for 2 years pumping powerful anitbodtics for 24/7. My docs believe either one of my many infections and/or the antibotics did the damage in my partiel lobe that started the seizures. Your infection or antibotics could have done the same.
jenn
 
Well, hello

there Artist!!!

Wow, you've had your fair share of stuff going on, haven't u?

It's really hard to know what could have caused your E. Nak's right, though, I think. Perhaps it WAS the encephalitis that set things off....considering the timing of the migraines.

Have you ever considered changing your diet to possibly help? I know that having changed mine has.......and adding a few key vitamins, and minerals, too. Magnesium has done the trick for my migraines, and muscle cramps as well. :)

Welcome to CWE before I forget. I'm sure you're going to like it here....lots of friends to make, information to find, and a great dinner party as well. It's great. And we'll all happily listen to you, so you now know that you have plenty of shoulders to lean on.

Take care,

Meetz
:rock:
 
thank you for the very kind welcome

Hey ArtistinArizona, welcome!

You've found a great club indeed, and now that you've joined we can show you the secret handshake and all... It sounds like you've had a lot thrown at you, including epilepsy. My guess would be that the encephalitis was perhaps the original cause, especially since your migraines commenced soon after. I hope that you feel free to share more of your experiences and to check out all the forums here -- we've got places to vent and laugh as well as forums to share news and post questions.

Best,
Nakamova

Thank you, Nakamova
I've read many of your posts already and have enjoyed them muchly.
I await instructions of the secret handshake...oh, wait, I already have an hand shake, in fact, two of them! :) (I'm sure that's an old joke around here!) :) I guess it's obvious that I approach most things with a bit of humor, hope that works here.

I do think that you are right about the encephalitis as the culprit here. I think I spent the majority of my time the last few years wondering what the cause was for this. We continue to try to figure it out, the docs are great, but, I finally cried, "Uncle" and surrendered to the fact that this is just the way it is and we'll just move on and try to live the best possible, productive, happy life we can.

This forum is fantastic and I am so appreciative of all of your fine efforts here.
 
I bow to you, Bernard...great website!

Hi AA, welcome to the forum. :hello:

Are you well controlled now, or still experiencing migraines/seizures?

Hello, Bernard

I am in awe of the posters, the wealth of information and nice, helpful, supportive feel of the website. I am so pleased to find you all.

My migraines have been much better since my Keppra was increased. However, I continue to have seizures daily with the full range of them. They are increasing in frequency and duration and becoming much stronger. We are trying several mixtures of drugs to try to get things under control.

I feel very fortunate to be here and have great compassion for everyone at this website. It is my hope to be a good, positive contributor here.

Thanks for the welcome, and, again, your great website. :)
 
Thanks for the kind welcome and your story

Welcome to our exclusive club! This is the best place to find a wonderful group of supportive friends who are so helpful.
I got diagnosed 2 years ago at age 47. I had a severe trauma to my arm which was followed my multiple infections. I had a port in my right arm for 2 years pumping powerful anitbodtics for 24/7. My docs believe either one of my many infections and/or the antibotics did the damage in my partiel lobe that started the seizures. Your infection or antibotics could have done the same.
jenn


Hi, jenn
That is an amazing story, I've never heard that antibiotics could be the cause of of e. I find that very interesting and shocking.

Finding the cause of e was my primary goal, but, since 70% of people with e have unknown origins, I guess I'm just part of the majority...so far. :)

Thanks, jenn. I appreciate your welcome. :)
 
Love a great dinner party!

there Artist!!!

Wow, you've had your fair share of stuff going on, haven't u?

It's really hard to know what could have caused your E. Nak's right, though, I think. Perhaps it WAS the encephalitis that set things off....considering the timing of the migraines.

Have you ever considered changing your diet to possibly help? I know that having changed mine has.......and adding a few key vitamins, and minerals, too. Magnesium has done the trick for my migraines, and muscle cramps as well. :)

Welcome to CWE before I forget. I'm sure you're going to like it here....lots of friends to make, information to find, and a great dinner party as well. It's great. And we'll all happily listen to you, so you now know that you have plenty of shoulders to lean on.

Take care,

Meetz
:rock:

Hi, ya, Meetz!

Thank you for your compassion and welcome. I look forward to reading your posts and knowing more of your story.

It's been a challenge to have this going on, but, as we all know, there's always someone much worse off than we.

I embrace the idea that vitamins and diet can be of help. I do know some of my triggers...lack of sleep, too much sugar and have just started taking B6 and B12 as well as Magnesium, Potassium, and Calcium. The doses are low as I don't want anything to upset the apple cart.

You can be assured I'll be spending a lot of time here reading other ideas and suggestions and success stories!

Thanks for the kind welcome, the advice, the support and I look forward to reading more of your posts.

Cheers!
 
Welcome ArtistinArizona!

It does sound like you have quite an incredible history there. There has to be a definite purpose to your life. I also love the arts but I have worked in the technical arena as well to support my musical and artistic addictions.

I've recently started the gluten diet and drastically cut back on diet soda. The caffeine withdrawal gave headaches, but I'm tapering off that stuff slowly now. The gluten diet is an excellent one to follow now that they have to label foods as gluten-free. I've been doing more home cooking and staying away from soy products as well.

This year, I intend on starting another brand new garden. Since it is SO nice outside here, I'm heading outdoors to start digging up the dirt. It's a great stress buster. Fresh veggies grown outside taste so much better. I live near a health food store, so fortunately I get organic food all year around.

Again, welcome! I'll be looking forward to your artwork in here. I love art.
 
Phew -- that's quite a medical history you have there ArtistinArizona, but you seem to have soldiered through it with aplomb.

Welcome to the forum!
 
Welcome to the forum :) What a journey you have had...my goodness! Great folks hear though, great support and always willing ot help :)

Beth
 
Welcome AinA to CWE.
I too admire your strength and positive attitude from the journey you have been on.
I am sure you will be able to offer support to many here.
My daughter is 18 and after a rough (though not compared with your journey) 3.5 yrs, we are seeing positive improvements in her health.

Note: I have read that high doses of antibiotics can cause such imbalance in the GI system that the good to bad ration of bacteria can actually cause a lot of problems, even neurological issues. One of our therapies is probiotics, which has been prescribed by Rebecca's nutritionist.
 
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