Just wanted to talk to others like me.

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cp dunbar

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New here, diagnosed with E at 12 years of age, treated with Dilantin and Phenobarbital for most of my life. Then tried Keppra, resulting in behavior changes, and then Lamictal with poor control. Now on Aptiom. Irritated that I cannot drive for 6 months.
I think my memory has been altered by many years of dilantin and phenobarbital.

I am a family doc, with specialization in pain and hospice patients.

Irritated because i feel embarrassed because of my E and irritated at myself for being petty. I have a great wife, and she has done all but move the sun and moon to make me feel better, but I still feel bad.
Taking this one day at a time. Trying to vent a little bit at myself to those I can talk to.
Thank you ,,, c.p. ,,,,,,, on a pond watching the geese.
 
Hi c.p. dunbar,
Welcome to CWE. Vent away. I wish my memory were better too, sometimes it's like having a colander for a memory

Not only do memory issues and aed's do go together but also epilepsy and memory issues, particularly TLE.
 
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just always know that you are never alone...and that someone...somewhere...has felt some sort of what you are feeling...this is the only place I can talk sometimes because nobody else I know knows what its like...ppl think that its just a 5 minute ordeal...and then life goes on....just small interruptions in your life...then back to normal...my entire personality has changed because of E...for the worse...and yes...the memory issues are very frustrating....I can relate to your issues...welcome to CPE...glad to have you!
 
Hey. :D It sounds like you'll fit right in. Glad to have you at CWE.
 
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Hi

Welcome to the forum, great place to vent & you meet some cool people too :)
 
Was just talking with wife tonight about memory loss via medication...

Hope you find great messages and can join in forums. We welcome you here.
 
I enjoy coming to the forum from time to time. I don't think my wife really knows how much I read some of the stories or interact with others. It is almost a bit of a release to read or share with others that are in a similar situation. My wife has a rare lung disease, she only has the use of one lung. I try to understand all that she goes through but I can't. She doesn't always understand what I am going through or think about this epilepsy disorder that I was diagnosed with either.

It seems to bother her lately when I was going through some of my medical records. I had to request a copy of my military medical records as one of the doctors in once saw left the area I live in and took the medical records with him. I started looking through the medical records looking for the records dealing with the seizure. My asked why I was looking at and that it would only make me paranoid about another seizure. I think I was concerned more so when I saw for the first time that I was diagnosed with temporal lobe seizure disorder. That's when I ended up here on the forum. Education is golden, as it helps bring some degree of understanding and sharing and releasing is great.

Hope that makes sense.

Gilles

Sent from my SM-T350 using Tapatalk
 
I agree Gnault...and I think the doctors assume that you know everything they do about your disorder sometimes...and they forget that when you are there also for your visit...they just kind of "skim" over your symptoms...and diagnosis etc...because they discuss the Epilepsy topic every day, all daylong...lol
 
I always read my emails and posts and seeing g just how many words don't exit my brain and I to the thing I was composing. It even happens at work at times.

Sent from my SM-T350 using Tapatalk
 
Carpentergirl said:
I agree Gnault...and I think the doctors assume that you know everything they do about your disorder sometimes...and they forget that when you are there also for your visit...they just kind of "skim" over your symptoms...and diagnosis etc...because they discuss the Epilepsy topic every day, all daylong...lol
Click to expand...

And this is why it is best for a patient with hard to control E to go to a specialist, an epileptologist. Mine hasn't treated me like I should know what they know, nor does she pretend to know everything. She is at the University Hospital and therefore is constantly learning as well as teaching.

cpdunbar, I hope you find a dr. you can talk to. I've had E for nearly 40 years and after my temporal lobectomy, along with meds, my memory has been effected greatly. Plus for many years I haven't been able to drive. After two accidents because of a CP seizure, I'll never drive again. I wouldn't want to be responsible for taking another person's life!
You will find your way.
Come back and vent some more..........
 
Hi c.p. Dunbar,
Welcome to CWE everyone here is a great friend and help. I started having seizures when I was 10 yrs. old and I'm 53 now. Just like you I started taking Dilantin and phenobarbital when I was a kid and yrs. later I was tried taking keppra and the drug gave me a hot temper and increased my seizures. I also tried Lamictal but I broke out with a rash from the drug so that ended that.
My Dr did a DNA test on me and by checking that out he was able to find the best seizure med for me with the least side effect. I've found taking vitamin B12 once a day a big help to reduce my seizures. Here's wishing you the best of luck and May God Bless You!

Sue
 
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cp dunbar said:
. Now on Aptiom.
Taking this one day at a time. Trying to vent a little bit at myself to those I can talk to.
Thank you ,,, c.p. ,,,,,,, on a pond watching the geese.
Click to expand...

Welcome to CWE, cp dunbar;

I am also on Aptiom (as well as Fycompa). On my neurologist's recommendation I started the titration onto Aptiom very slowly, by starting at 200 mg and going up in 200 mg increments mainly to minimize side effects. I am currently at 900 mg, and seeing about a 50% improvement in seizures. How are things going for you on the Aptiom? Where are you at in terms of titration? If your neurologist approves, I'd encourage 200 mg increases rather than 400 mg increases if there are plans to increase your dosage. I hope Aptiom works well for you!

As far as the venting goes, feel free to vent here any time. We will understand :)
 
No one is calling you complex partial, when you write c.p. with out the periods the auto correct feature changes it to "complex partial" since many people write "C.P."(without the periods) instead of complex partial and auto correct changes it so people not familiar with the epilepsy acronyms can follow the conversation.
 
Welcome c.p. dunbar,

I bet the reason you feel embarrassed about your E is b/c of social stigma. We need to continue educating others and never stop so that hopefully some day the social stigma will be gone.
 
Hello CP

welcome to the CWE.

I was on Dilantin for 26 years and it will mess your memory up royally; and Phenobarb I never had a problem with but I've been on meds 52 years for epilepsy.
 
I love this web site, it's great. You can ask a question and find out that you aren't the only one that those things happen to.

I have horrible memory problems. After my first seizure I forgot almost everything that happened for the 10 years before it. My memory is still pretty bad. After a seizure a lot of times I forget everything that happened a few days before it. My long term memory is horrible. Just yesterday a commercial came on for a tv show that I've watched for 4 seasons. I knew I really liked the show but couldn't remember a thing about it. My husband couldn't believe it, he just didn't understand.

I constantly ask the same questions over and over again. My family gets mad because I do this but I don't even remember that I'd asked the question in the first place, or second or third or fourth and so on...... They don't know why the answer doesn't stick in there because they've told it to me so many times.
 
Valerie,

I know how you feel in dealing with family regarding memory problems. I finally got my family to realize the severity of my memory issues. I think it may have helped when they saw my MRI. My left Hippocampus which controls verbal memory had severe atrophy. It shrunk about 50% from all the seizures. Now, my left Hippocampus has been removed so my memory issues are even worse. Our memory issues can seem unreal. It seems unreal to me sometimes. As I'm sure you realize, there's a normal memory decline with age. Well, I was having a conversation with a man in his mid seventies the other day. His brain works better than mine and I'm 48. But, I've been told he has an extraordinary memory. Several times, I couldn't think of the word(s) I wanted to say. I described and he said it.

I'll be in the middle of watching a movie or TV show and forget what happened earlier. I'll have a conversation and five minutes later forget what was said in the conversation. There are times my memory issues have caused family or my boyfriend to get mad at me. They could not believe that I didn't remember what was just said in a conversation a few minutes ago. It could have been something that I said or that someone else said. But, now I think they finally got it. Although, sometimes they have to remind themselves about my memory issues.
 
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Amen to all that you just said Music36...lol it's so hard to explain all that to someone...I just came back to the dentist this morning...more cracked teeth! yay me...People have no idea what we go through...just like they said on another post..we may look find on the outside....but we sure go through hell and back on the inside....
 
Carpentergirl,

I grind my teeth in my sleep sometimes which has caused some chipping.
 
Carpentergirl,

Going through surgery was hell for me. These surgeries are usually done at a teaching hospital and there appeared to be some miscommunication between my surgeon and a resident. My surgery was on a Friday so then comes the weekend. I was NOT put on steroids right away after surgery and my brain became very swollen. I was in so much f---pain, morphine wouldn't even work. The pain was unbearable and unmanageable. I wanted to die b/c I could not take the pain. I was scared and didn't know what was wrong. They took me for a CT Scan to see if I was bleeding in my brain. My father raised hell and made them call my surgeon on Sunday. My surgeon told the nurses to put me on steroids. I started feeling better after a few doses of steroids b/c the morphine was then actually able to do its job when the swelling came down. On top of that, I was very, very sick from the anesthesia for several days. They had to try a number of anti-nausea drugs to get me to stop vomiting right after the surgery. But, then I started vomiting again. I could barely eat for days and I had so many drugs in my body. My boyfriend was wonderful and spent every night in the hospital with me. He took care of me. I have to say it was worth it, though. The surgery has made a big difference.
 
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