After 10 years of denial, I'm getting help for my e. Tips?

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My meeting with my neurologist went as expected. Diagnosed with temporal lobe epilepsy from my EEG. My doctor said that people with uncontrolled TLE can suffer from...

-An argumentative personality
-Quick temper
-Paranoia
-An inability to listen to or trust anyone.

That sucked to hear read out in front of me because all of those things cost me to lose jobs, friends, and significant others over the past two years. Now taking meds regualarly, cutting out the booze (I'll miss you so....) and always learning something new to keep up.

The testing with the neuropsych went just as those other threads said they would. Mostly testing memory, speech, language, and math skils. I tested normal or above average on everything but visual processing, which can contribute to not remembering faces or not being able to assemble things as well as others.

Another part of the test were about 500 questions that tested your mental functioning. I was diagnosed with generalized anxiety and mild depression...neither of which surprised me given my state of mind during the testing. Given the questions I read, I'm certain that diagnosis could have been much worse. Dr. recommended counseling (at her facility of course)

Good thing, my neuro gave me permission to drive with medication and says that I have no restrictions on life (besides flying, military service, skydiving, and working around heavy machinery, of course)

Now if I could just stop living in constant fear, I think I'll be alright!
 
Hey there, Mr.21T!

Good to see you back here. Wondered where you had wandered off to for a while there.

Glad to hear that you can keep your license. So you can't skydive, drink booze or join the army. Well, that sounds like epilepsy could be increasing your life span to me. :)

Stick around. This is a great place to learn and to know that someone else really "gets it" when you talk about your situation.

I've been having some really good results with cutting back on my meds using holistic healing (check out My Personal N=1 thread for the details if you're interested). Once you are stabilized, maybe you could think about that approach too.
 
Hi Mr.21T! That living in fear thing is a killer, isn't it? It's tough not knowing exactly when the next seizure might hit when it seems that you're doing everything within your control to keep it from happening. It looks like you're doing everything you can to increase your neurological health, while also taking care of your physical health. :)

I live a healthy lifestyle to a TEE. I'm in the gym 5 days a week-twice a day, training to compete in powerlifting and a bodybuilding competition. I eat a clean, bodybuilding diet, counting my micros and macros lol. No drinking, tons of sleep, take my meds. And whammo...seizure in the gym last week. MY gym. MY HAPPY PLACE. I had no warning at all. I was in mid sentence, talking to my trainer and came to on the couch. After the embarrassment wore off, I got pissed. I'm pissed that no matter how well I take care of my body and do everything that I'm supposed to do, my brain still fails me. I'm not sure how to shake the feeling of being made of glass.

Keep on keepin on...and keep doing those squats! I'm not sure where I read about your tv break squats lol. Today was legday so I'm feeling the pain. My deadlift is my strength...I'm hoping to be at 250lbs in the next 6 weeks! Thanks for your inspiration. :)
 
Hi Mr.21T! That living in fear thing is a killer, isn't it? It's tough not knowing exactly when the next seizure might hit when it seems that you're doing everything within your control to keep it from happening. It looks like you're doing everything you can to increase your neurological health, while also taking care of your physical health. :)

I live a healthy lifestyle to a TEE. I'm in the gym 5 days a week-twice a day, training to compete in powerlifting and a bodybuilding competition. I eat a clean, bodybuilding diet, counting my micros and macros lol. No drinking, tons of sleep, take my meds. And whammo...seizure in the gym last week. MY gym. MY HAPPY PLACE. I had no warning at all. I was in mid sentence, talking to my trainer and came to on the couch. After the embarrassment wore off, I got pissed. I'm pissed that no matter how well I take care of my body and do everything that I'm supposed to do, my brain still fails me. I'm not sure how to shake the feeling of being made of glass.

Keep on keepin on...and keep doing those squats! I'm not sure where I read about your tv break squats lol. Today was legday so I'm feeling the pain. My deadlift is my strength...I'm hoping to be at 250lbs in the next 6 weeks! Thanks for your inspiration. :)

Wow. To keep moving on after that setback shows how strong you really are. Keep at it! BTW I just started deadlifting again after a year & I'm only doing 245 right now...your thighs must be ready competition.

I'm 24 and all my friends are joining the military, police force, and playing sports so the limitations of E are becoming very apparent to me. I'm still seeking something that I can "give my all" towards.
 
My meeting with my neurologist went as expected. Diagnosed with temporal lobe epilepsy from my EEG. My doctor said that people with uncontrolled TLE can suffer from...

-An argumentative personality
-Quick temper
-Paranoia
-An inability to listen to or trust anyone.

Everyone is different, but it is important to remember that docs will often spit out things that people with epilepsy CAN suffer from , but that doesn't mean you DO or WILL in the future. Some cases are mild, relatively speaking. If you aren't having a ton of seizures, that is a good positive.

Next, know that I took Tegretol and later Dilantin for 20 years, and I felt fine while taking it. I didn't slow me down or cause me brain fog or anything. I had a seizure from time to time, but I have auras, so I knew when they were coming, but often went years between them so they didnt affect me too much. I tell you this, so you know that you can have a life.

Also, you mentioned others joining the military and what not. Its true the military will be out for you, and having E will be challenging at times, but it doesnt have to always be. In fact, you will have a perspective, strength, and empathy that others may not have because you will have been tested in a way that others may not have been.

Keep in mind that you can still be a law enforcement officer (or fire) if you that is what you want (I only bring them up as you mentioned something about this), depending on the department (and that includes at the federal level) if that is what you desire. The main thing there is that they will review your INDIVIDUAL case, and if you are controlled and have a good regimen that keeps you where you need to be, then you can do jobs like that. Again, it depends on the individual and your particular condition.

Also, as a guy who is just starting meds, I'd give you the following advice. Go ahead and get a full hormone workup now. Docs may not want to do this, but insist on it. I'm talking more than testosterone. If a doc won't do it, tell them you want a baseline and go to another doc (maybe an endocrinologist) who will do it for you.

Get Testosterone, Free Testosterone, LH, FSH, Estradiol, Prolactin, Full Thyroid panel, DHT, DHEAs, PTH, etc. Also, get cortisol, Vit D, vit B12, folate and other vitamins and minerals tested. Long term use of drugs can have an effect on you, -and while it may not ever be a problem for you-, but just in case you want to establish a baseline of where you are at while you are feeling good and normal in case anything ever changes in that regard down the road.

You'll also want to get the full thyroid periodically just to keep an eye on med side effect. Again, insist on it. Just like establishing a baseline on cognitive function with neuropsych tests, go ahead and establish a physical baseline for yourself with these other tests. Again, it may never be a problem for you, but it will be good info to have. And, even if you dont have issues, I'd get them redone every 5 years or so, just to keep an updated history as you age.

Hope all goes well for you and remember, you can still do and be many great things.
 
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Everyone is different, but it is important to remember that docs will often spit out things that people with epilepsy CAN suffer from , but that doesn't mean you DO or WILL in the future. Some cases are mild, relatively speaking. If you aren't having a ton of seizures, that is a good positive.

Next, know that I took Tegretol and later Dilantin for 20 years, and I felt fine while taking it. I didn't slow me down or cause me brain fog or anything. I had a seizure from time to time, but I have auras, so I knew when they were coming, but often went years between them so they didnt affect me too much. I tell you this, so you know that you can have a life.

Also, you mentioned others joining the military and what not. Its true the military will be out for you, and having E will be challenging at times, but it doesnt have to always be. In fact, you will have a perspective, strength, and empathy that others may not have because you will have been tested in a way that others may not have been.

Keep in mind that you can still be a law enforcement officer (or fire) if you that is what you want (I only bring them up as you mentioned something about this), depending on the department (and that includes at the federal level) if that is what you desire. The main thing there is that they will review your INDIVIDUAL case, and if you are controlled and have a good regimen that keeps you where you need to be, then you can do jobs like that. Again, it depends on the individual and your particular condition.

Also, as a guy who is just starting meds, I'd give you the following advice. Go ahead and get a full hormone workup now. Docs may not want to do this, but insist on it. I'm talking more than testosterone. If a doc won't do it, tell them you want a baseline and go to another doc (maybe an endocrinologist) who will do it for you.

Get Testosterone, Free Testosterone, LH, FSH, Estradiol, Prolactin, Full Thyroid panel, DHT, DHEAs, PTH, etc. Also, get cortisol, Vit D, vit B12, folate and other vitamins and minerals tested. Long term use of drugs can have an effect on you, -and while it may not ever be a problem for you-, but just in case you want to establish a baseline of where you are at while you are feeling good and normal in case anything ever changes in that regard down the road.

You'll also want to get the full thyroid periodically just to keep an eye on med side effect. Again, insist on it. Just like establishing a baseline on cognitive function with neuropsych tests, go ahead and establish a physical baseline for yourself with these other tests. Again, it may never be a problem for you, but it will be good info to have. And, even if you dont have issues, I'd get them redone every 5 years or so, just to keep an updated history as you age.

Hope all goes well for you and remember, you can still do and be many great things.

Thank you for the very encouraging words.
 
Could someone possibly explain why Dignan said the hormone workup is so important? I ask because my mother has had thyroid issues as well.

I'm in that phase with Tegretol where you're in that drug haze where you can't tell if it's working or not. I'm not having any side effects except a serious lack of self-identity. When I think about what I want to wear, how I want to behave, what I truly desire...I have no answers, and it scares the **** out of me. I don't seem to passionate about anything or anyone.

I'm slipping a bit in speech and social situations, too. I have a small stutter that's gotten a bit worse even though I'm talking slower and pausing before speech. If I'm not stuttering I'm talking a mile a minute at a rate that's incoherent to whoever I'm talking at.

On the pro side, I've worked out in isolation every day. Every day. And sometimes at the gym or lake with friends and I'm ripped af. Figure if I'm going to be in a drug haze might well get swole in the process. My work has been good too. I've been working at the pace of a college student on adderall.


EDIT: Forgot to mention that my neurologist gave me a referral to a psychologist on account of the anxiety and drinking previously reported. I'm not a fan of antidepressants, so I decided to hold out for something better. Perhaps a support group or just people with e who are successful.
 
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Hey there,

The hormone workup is just my opinion based on my own experiences. Long term use of some AEDs can have an affect on some hormones, depending on the drug. This can be thyroid (which I've heard is smart to monitor regardless which AED you take) or just typical sex hormones.

Dilantin and Tegretol for example can increase SHBG which binds to testosterone and can lower your Free/Bioavailabe Testosterone as a result. It can cause Estradiol to increase as well.

I'm not trying to scare you or say this will happen (as it is likely it will not be a problem for you), but after taking Dilanting for 15+ years and then getting off of it, I began having issues (and feeling strange) that seemed to indicate a hormone issue. Though all my levels look normal and no doc will admit the drug played a role.

What they did say is that, even though my numbers are "normal," that everyone is different and perhaps I operate at a higher level of normal than others. In that case, it would have been good to know what my levels were through the years when I was taking AEDs and yet felt fine. But, since no one told me get those numbers, we never had a baseline to check my current "normal" levels against.

Again, this is nothing for you to really worry about right now. I just think it is a smart thing to do for the long term, just in case you ever do take a particular drug for a long time, and begin to have some problems later in life, you will at least be able to look back at labwork from when you felt good to make determinations about what is normal for you, and perhaps avoid the confusion that I have experienced. Its one of things you can't go back and do later AFTER problems start.

With specific regard to thyroid, see the article below on why people that take AEDs should have this monitored.

http://epilepsytalk.com/2011/06/01/what-everyone-with-epilepsy-should-know-about-their-thyroid…/

Hope that helps, let me know if you have more questions.
 
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