Diagnosed with Epilepsy at 55yrs old

Scottc

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January 8th I had my first Gran Mal. I had a pituitary tumor removed and doctors think it's from scar tissue that developed from that surgery. Since then my my memory has been bad and my cognitive abilities have been diminished to the point I can't work at my IT job since. I had another big seizure in May. In between and since I have maybe 10 to 60+ aura seizures daily. I have tried Lamictal, Keppra, Vimpat and now Carbazapine. Non control the aura seizures. For me it is very scary because I never know if it is going to escalate. I live alone. I am nervous to leave my home because I fear something will happen out in the world. I have had many Mri and cat scans I am going another mri and pet scan later this month. I had a five day eeg. I only had many aura seizures and they were happening to deep in the brain to record. My medical team thinks they are occuring in the olfactory bulb. Epileptoligist is looking to see if it may be operable or possible implant. This scares me as surgery is how I possibly got here to begin with. I have to say I am difficulty thinking this is my life now. A friend suggested finding a forum like this for support.
 

Porkette

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Hi Scottc,

Welcome to CWE! I'm sorry to hear that you had a tumor and it has created scar tissue. I also have scar tissue on the right temporal lobe
of my brain and have had seizures for 49 yrs. Just like you I have tried many seizure meds and then my Dr. did a DNA test on me and found
out I was drug resistant to all seizure meds out on the market. You may want to ask your Dr. to do a DNA test on you to find out if you are
drug resistant like me or this will also show what seizure med will help you the most.

I had surgery done and my Dr. removed 70% of my right temporal lobe and all of my right hippocampus to reduce my seizures and it
was wonderful. You may want to ask your Dr. about Gamma knife surgery or a DBS (Deep Brain Stimulator). Take note of what the weather
is like when you have these seizures because often a low pressure in the weather may trigger seizures for some people and I found out
that using nutra sweet (aspartame) like diet soda was the worst thing for me it triggered seizures like crazy for me.

The next time you feel a aura seizure start tighten up all the muscles in your body and make your hands into tight fists if you do it
quick enough it will stop the seizure. My neuro taught me this back in the 1970's.

I know it's hard to adjust to seizures but try and keep yourself busy this is what I found helped me the most then I had less time
on my hands to think about all the negative things with my seizures. In the long run I didn't let the seizures stop me I worked
for 35 yrs. and I just retired this past June. I wish you only the best of luck and May God Bless You!

Sue
 

Scottc

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Hi Scottc,

Welcome to CWE! I'm sorry to hear that you had a tumor and it has created scar tissue. I also have scar tissue on the right temporal lobe
of my brain and have had seizures for 49 yrs. Just like you I have tried many seizure meds and then my Dr. did a DNA test on me and found
out I was drug resistant to all seizure meds out on the market. You may want to ask your Dr. to do a DNA test on you to find out if you are
drug resistant like me or this will also show what seizure med will help you the most.

I had surgery done and my Dr. removed 70% of my right temporal lobe and all of my right hippocampus to reduce my seizures and it
was wonderful. You may want to ask your Dr. about Gamma knife surgery or a DBS (Deep Brain Stimulator). Take note of what the weather
is like when you have these seizures because often a low pressure in the weather may trigger seizures for some people and I found out
that using nutra sweet (aspartame) like diet soda was the worst thing for me it triggered seizures like crazy for me.

The next time you feel a aura seizure start tighten up all the muscles in your body and make your hands into tight fists if you do it
quick enough it will stop the seizure. My neuro taught me this back in the 1970's.

I know it's hard to adjust to seizures but try and keep yourself busy this is what I found helped me the most then I had less time
on my hands to think about all the negative things with my seizures. In the long run I didn't let the seizures stop me I worked
for 35 yrs. and I just retired this past June. I wish you only the best of luck and May God Bless You!

Sue
Thank you Sue. Those are encouraging words. I have been sinking lately. I'm glad I found this forum. I will ask my neuro about the DNA test. She already told me she didn't think they could control the aura seizures with meds. Luckily I don't drink soda. I will watch for that in other things. I really appreciate the reply.
 

Porkette

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Hi Scottc,

If your Dr. tells you that they don't do DNA test don't believe him/her because all they have to do is draw blood and
get some salvia from you and send that to the lab. Then the lab will be able to see the amount of enzymes in your liver
along with your body chemistry and they can match that up to the best seizure med with the least side effects or tell if you
are drug resistant like I am.

Try to stay away from stress and lack of sleep these are the 2 main things that can trigger seizures. Also cut back on the
carbs and starch foods and start eating foods high in fat. This will build up ketones in your body which will help reduce your
seizures. It's known as the ketogenic diet and it's been around since 1927.

Here's wishing you only the best and May God Bless You,

Sue
 

Scottc

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Thanks again. I will talk to my doc. Interesting about diet. Good advice. All so new and scarey. Hope to have more info after 9/20 appt.
 

Scottc

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Another strange thing I haven't been able to understand. Since my first seizure this January my connections to people I was close with has changed to being flat and not really caring. Even things I loved to do. I live on my sailboat and love to sail but don't seem to have that passion like before. I even let my ex keep my dog I had for 9 years as when I came home from the hospital didn't really even know who she was. We have been inseparable for 9 years before. Also I had walked away and left her a couple times forgetting she was with me. Everything is so different now and don't feel like myself anymore. Not sure what to think about all this. Even wonder if I will get back to work as my short-term memory is not that great. I tried working but had forgotten everything. I had the same job for 10 years. I am a Systems Administrator for a financial company.
 

Sabbo

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Hello. I have simple & complex partial seizures. I take 400mg/day each of Topamax & Zonisamide. I've tried every AED out there for my types of seizures, and was allergic to many. I still average 1-3 breakthrough seizures/month.
Many seizure medications cause memory issues. I often notice that I'll easily forget why I went into another room. Topamax/Topiramate is often nicknamed to as "Dopamax" because of the "word loss" issue it can cause. Sometimes when I'm talking & know what I want to say, but can't--even though I can literally see the words in my mind as if they're on paper. It's like my brain & mouth can't connect.
 

Scottc

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Exactly what happens to me. It is so freaky to read on this forum how many things are exactly what I am experiencing. When I was on Keppra 2000mg, I was psychotic. I was staying with my ex, luckily and she experienced the horror I was in. Hearing voices tell me to stop taking my neds cause they are poison. So many scarey things she had to tell me I said that I didn't remember. Never again. Also my mood swings and instant rage. So glad I found this site. No one I know understands. They try to say I forget things too, it's age. That really pisses me off. This is different. Thanks again everyone for sharing your stories.
 

Heavy Kevy

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Hi
I have a similar story as well. I was about 45 when I had my first seizure. Had a benign tumor removed and the scar tissue has continued giving me seizures. I’ve tried many AED’s. It seems like the medications affect everyone differently. It’s a constant battle between controlling seizure frequency, intensity, side effects and quantity of life. Lack of sleep and stress are my triggers.
Meditation helps me relax fall asleep faster. Not driving or drinking (I use to love beer) has hurt my social life. At times it’s hard to stay motivated to even do things I enjoy. Look into disability pay if it’s available. Try and keep a journal of your moods and seizures. I use a free journal from the epilepsy foundation website. Stay in touch with your doctor. Although it feels like they are just guessing at least it’s an educated guess. There are some real kind people here. Best of luck to you.
 

Nakamova

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Hi Scott, welcome to CWE! Glad you found us. :)

You've gotten good advice from the folks above, I hope you can find a treatment that works for you. Everyone is different. What works for one person doesn't always work for others, so good to check with your neuro or regular doc before making any changes. Some folks have had success with implant, so worth considering -- but at your own pace, and only if you feel ready.

Perhaps your neuro can recommend a neuropsych who can help with the memory issues and depression -- as you've found, epilepsy and e-meds can cause them both. And are there any resources in your neighborhood or city/county for finding a "buddy" to go on walks with or drive you places? Absolutely understandable that you are nervous to go out, but hopefully you'll eventually feel comfortable doing so and maybe even getting another pet (perhaps even a seizure dog!).

Best,
Nakamova
 

Cint

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January 8th I had my first Gran Mal. I had a pituitary tumor removed and doctors think it's from scar tissue that developed from that surgery. Since then my my memory has been bad and my cognitive abilities have been diminished to the point I can't work at my IT job since. I had another big seizure in May. In between and since I have maybe 10 to 60+ aura seizures daily. I have tried Lamictal, Keppra, Vimpat and now Carbazapine. Non control the aura seizures. For me it is very scary because I never know if it is going to escalate. I live alone. I am nervous to leave my home because I fear something will happen out in the world. I have had many Mri and cat scans I am going another mri and pet scan later this month. I had a five day eeg. I only had many aura seizures and they were happening to deep in the brain to record. My medical team thinks they are occuring in the olfactory bulb. Epileptoligist is looking to see if it may be operable or possible implant. This scares me as surgery is how I possibly got here to begin with. I have to say I am difficulty thinking this is my life now. A friend suggested finding a forum like this for support.
Hi Scott,

Sorry to hear about the pituitary tumor and the problems you've developed since the surgery. I have refractory E, and have tried so many drugs. I had a left temporal lobectomy back in 1990 and was only seizure free for 14 months. So six years later my neurologist suggested I get the VNS implant. I did get it, but it hasn't completely stopped the seizures, just cut out the tonic-clonic ones.
I understand your fear of leaving your home, but remember, seizures can happen in the home, too. I was severely burned in my bathroom because of my 1st TC seizure. I've also had them out in the public before I had the VNS implant.
I would suggest having the implant instead instead of another brain surgery, but that's just my 2 cents.
Truly hope you find something that works.
 

elizzza811

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I'm in a similar situation. I don't have grand mal seizures, but I don't believe I'm out of the woods with my seizures. Independent (both sides of my brain) focal complex partial seizures. A seizure behind the wheel at 40 is what finally got me a diagnosis.

I'm 56 now, and it's just me and my cat. My cat can't dial 911, and my neurologist isn't taking any of my symptoms seriously. I have head tremors that have me nodding no, but he won't order any testing.

I also understand your fear of another surgery. My granddaughter just had chiari malformation decompression surgery, and she's experiencing all sorts of problems with blood pressure and blood sugar.

What are your aura seizures like? I wake up stumbling, bouncing off of walls like I'm drunk, and just feel spacey, in a good way. I noticed though that the last time it happened, my eyes were darting side to side, sometimes darting in circles.
 
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