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renee? How was the dentist? :)
I think if it were figured out I would have spent at least 2 years in a dentist chair in the past 63 years. Husband always says I should just smile BIG when people wonder why I don't have nice jewelry.

Anyhow ......... I'm hoping/praying that my surgery has ended my seizures. In certain cases good brain surgery can remove the section of the brain that causes seizures. Brain surgery is not as complicated and scary as it sounds. Honest!!
 
Dentist?
Oh, you mean my very uncomfortable Monday afternoon! Yea, I was able fairly early on to inform them that lying on that hard surface was going to kill me much worse than any drill as I have been have major neck / shoulder pain. They provided a pillow-much better. More times at the chiropractor then the Dentist.
I briefly "worked with" / got a second opinion from a Neurologist who advocates surgery. he never said anything to me about it. Beats me. I do know that everyone in the Neurology office is aware that I am a composer and writer and I am extremely reluctant to have anyone do anything above my neck!
 
Sometimes, dare I say it, STRESS is what doctors blame when they can't figure it out or don't listen to the details. It is a nice catch-all. Personally I tend to get a little peeved when the doc says the meds are fine its stress that is the problem. Life does go on and lots of people have lots of troubles and most of them don't blackout- I didn't either for 37years while working, moving, pregnancies,childrearing bills,etc. so what changed?
 
PS - I think it is the bodies way of saying something is amiss. Everything needs to be evaluated and make changes where it will help.
 
Robin, You seem like such a nice person and so positive! I must apologize if I sound a little negative. I'm 20 hours into detox from the zonegran and my normal disposition has been missing in action for the last two and a half weeks.The ever present headache is finally waning and I don't feel like crying or slapping someone(at least not at the moment) so I'm thinking IT MUST BE THE MEDS what a suprise. I must admit the meds did stop the seizures and my brain seemed sharper/ I found I didn't have to concentrate so hard on so much but boy is it hard to live with the irritibility, headache, and general mood made of stone. I will be better or at least happier and I did decide a while back that quality trumps quantity when it come to how I want my life to play out.
 
PS - thank you for the kind words.
Oh believe me I get negative and peeved and irritable. Almost put my fist through a wall one day, but I knew I would have to go to a doctor so I backed away. That was the day the pediatrician cancelled us, and we still had no definitive answers. I agree with everything you are saying. I have had quite a ride for the past year. Everyone has their story though, and there are many more serious than ours.

I just can imagine what going off a med would do. I wish you speedy health. A few weeks ago when Rebecca was on Lamictal, she said I would rather have seizures than feel like this Mommy. I knew then it wasn't the med for her. It is amazing how very little of these drugs can cause such severe side effects. They alone put an incredible amount of stress on the body.

Again, I wish you health, and hope each day is better than the one before.
 
Robin, I must say that a supportive family is crucial, and a sense of humor is absolutely essential. My husband says I have blacked out in some of the best places. Of course my best event was a blackout while on horseback on mother's day. Obviously this is not a recommended pastime for E's but I was hip deep in my denial phase. Fortunately the horse had more sense than I and just stood like a statue-animals seem to know.-- Woke up today and already feel more myself so I will put one foot in front of the other and move on one step at a time. Hope your daughter is doing well, she is lucky to have a mom like you!!
 
My experience

I Was Just Diagnosed3 Months Ago And I Am 51 Years Old. I Have No Idea What Caused It. We Can Do It. Monday I'll Be Put On My Third Med, But It's Ok. My Mother Had Much Worse Of A Time With Seizures And She Lived A Full Life.
 
To Paradise Survivor
No MD nor anyone else, ever gave me a rational, or even an irrational explanation why I acquired epilepsy at the age of 55. After a second week in a hospital, my Neuro did tell me that "most likely I was born with this and most likely there was a genetic link." Hmm, that helps a lot. Considering the extreme stress that had been building since 2002, and the timing of my first t/c seizure being five days after a termination, I came to the conclusion that STRESS had a very large role to play. And considering also that, up until fairly recently, I had from two to five different "personal stress reducers" (now I only have one), that is my personal conclusion.
Part of my brain might be mis-firing, but most of it works just fine thank you.
Renee 97
 
My frustration is why are they not looking at what was working for 50 yrs, and return you to that state of balance, rather than adding to the imbalance with meds.
 
Hi Lisa,
I had a chance to check out your web page, but couldn't listen to your music (drats!).
This old laptop is on Windows 98 and has almost no frills and a damaged hard drive. I'm hoping to retire it soon.
Stress can indeed trigger seizures and over time could damage the brain, leading to developing a seizure disorder. Check out the posts on kindling and you will see how the process plays out in a lab setting. On the up side, though, learning relaxation techniques is very useful in bringing them under control.
Developing seizures need not be a sentence to a lifelong disorder. There is much, much, you can do to learn to manage seizures on your own that don't involve using drugs, yet can also be used along with anticonvulsants if you take them.
Even if you are super healthy and a vegetarian, there are diet considerations in what may cause seizures to develop. Some of these are elevated levels of homocysteine, gluten intolerance, using artificial sweeteners, vitamin D deficiency, just for a few.
If you are a strict vegetarian, you may not be getting adequate B12. Also, some researchers suggest that after about fifty, we don't produce enough stomach acid to get B12 out of our food during digestion. That can lead to many problems including high levels of homocysteine, which can lower the seizure threshold, and lead to psychiatric and and neurological symptoms. You can do a google search on ANY of the drugs or other medications you have taken or take now to see if they lower the seizure threshold. Your pharmacist can also give you much of that information.
Glad you found the house party [maybe we will have to change it to block party if the crowd keeps growing ;)]
Zoe

Below are some links for you to explore:

This will get you to information and free instructions for progressive relaxation:
http://www.healthy.net/scr/article.asp?lk=P7&Id=1979

Stress and the seizure threshold:
http://www.epilepsyontario.org/client/EO/EOWeb.nsf/web/Stress+in+the+Workplace
 
Stress is such a subjective thing. For me it is hit or miss and not a straight line. On my way out to dinner (my favorite thing) huge event...My daughter's wedding, complete with my mother and her broomstick...nothin(thank God!) so I don't get it.
 
Dear Zoe and Robin,
Thanks very much for the information and compassion.
First to address the "imbalance" with the meds: I have lost count of the number of EEG's and in-patient video-EEG's I have had-several I am certain. I have been told, usually, that I have primary generalized epilepsy. usually, meaning until lat September when a Neu Neurologist said "maybe." I do not know what "that state of balance" was any more. I had eight great years of being a woman (transsexual woman) and then this happened.
I have been treated for Depression since at least 1982. In 1993 I started taking Zoloft. i still am. When I confronted my Psychiatrist about prolonged use of anti-depressant's leading to seizure activity, she was quick to "blow that off."

Earlier this year I ran (literally) out and purchased Sharon Begley's "Train your Mind, Change your Brain" book which I heard about on National Public Radio. I have now read it three times and have memorized sections. I even managed to dispose of one of my old OCD habits since reading the book. I keep thinking that since it IS possible to train one's mind and physically change the brain (there is data in the book about this), why can't this be used for epilepsy? Or can it be used, and I just have not found it yet? If I can make it to 57, gender reassignment, and have the (few) successes I have, why not this one also?

Lisa Renee
 
"Why not this one also?" Go for it, Lisa!
Seizures can indeed be a side effect of zoloft. Check out this abstract from Medline:

MedlinePlus Drug Information: SertralineSertraline may cause side effects. Tell your doctor if any of these symptoms ... shaking hands that you cannot control; seizures; hearing voices or seeing ...
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a697048.html

You do know, I'm sure, that it is not safe to just stop taking a drug. You may also want to get a copy of Peter Breggin's book, "Your Drug May be Your Problem." He's a psychiatrist who realized many folks were having symptom due to the drugs. Here's a link to his web site:
http://www.breggin.com/
This site for alternative [non-drug] approaches to mental health may be a good resource for you too. I've used it and they list physicians in different states. I did find a few quacks in there, too, so always keep a skeptical eye open.
http://www.alternativementalhealth.com/about/default.htm

A google search on "lawsuit" "zoloft" "seizures" turned up a lot of links.
This is from one of them
Zoloft

Zoloft (sertraline) is prescribed to relieve symptoms of depression, panic disorder and obsessive-compulsive disorders. The medication is supposed to work by restoring the balance of certain naturally-occurring chemicals in the brain. However, Zoloft has recently been linked to serious side effects including; fainting, irregular heartbeat, chest pain, muscle pain, trouble swallowing, ringing in the ears and seizures.
Link:
http://www.fightingforyou.com/SiteMap/ShowTopic,1,109.html

There are lots of diet and nutrition approaches to managing depression too, so you've got many options.
Zoe
 
I have repeatedly, stress repeatedly, again and again told therapist and shrink that if I had no epilepsy, I would have no depression. It would be easy to use the same basic technique that I described from before to rid myself - no drugs - from depression. I want to get off the F***** sertraline so bad, but I am between a rock and a hard place with the anti-seizure drugs. Every time I try to taper off the Lamictal, I start having problems and I still need to get off the Keppra.
I am personally convinced that 13 + years of Zoloft contributed mightily to the seizures. In fact I started to get off the sertraline on my own before I started taking Dilantin for the epilepsy, and then the **** hit the fan. I have had more problems since then with everything.

Oh, and one last thing. Relaxation techniques? I looked up several of these online and used them. I have not been able to get them to work except for a small portion of time. I think I know why this is, but I can't prove it. If all else fails, and right now all else IS failing, I will "stage" a seizure to get into the ER. Hell, the state of MN just sent me a letter yesterday saying I was no longer legal to drive. Guess why? They did not get the paperwork from my Neurologist! I am so happy. Yea, sure.
 
renee97 said:
I have repeatedly, stress repeatedly, again and again told therapist and shrink that if I had no epilepsy, I would have no depression. It would be easy to use the same basic technique that I described from before to rid myself - no drugs - from depression. I want to get off the F***** sertraline so bad, but I am between a rock and a hard place with the anti-seizure drugs. Every time I try to taper off the Lamictal, I start having problems and I still need to get off the Keppra.
I am personally convinced that 13 + years of Zoloft contributed mightily to the seizures. In fact I started to get off the sertraline on my own before I started taking Dilantin for the epilepsy, and then the **** hit the fan. I have had more problems since then with everything.

Oh, and one last thing. Relaxation techniques? I looked up several of these online and used them. I have not been able to get them to work except for a small portion of time. I think I know why this is, but I can't prove it. If all else fails, and right now all else IS failing, I will "stage" a seizure to get into the ER. Hell, the state of MN just sent me a letter yesterday saying I was no longer legal to drive. Guess why? They did not get the paperwork from my Neurologist! I am so happy. Yea, sure.
Click to expand...

"transgender Hormone Therapy" if your taking any of the Hormone drugs maybe they are causing the seizures" Drugs and chemicals that affect hormone systems i would think could cause seizures... if you are id talk to your doctors about that.

love angel
 
No.
My Ob/Gyn almost laughed. I don't remember her exact words, but it went like:
"First I have hever heard of anyone getting epilepsy over the age of 50, and I have never heard of a male to female transsexual having seizures just because of hormones. Not likely."
I have to agrree with her. It seems too far fetched.
LR
 
renee97 said:
No.
My Ob/Gyn almost laughed. I don't remember her exact words, but it went like:
"First I have hever heard of anyone getting epilepsy over the age of 50, and I have never heard of a male to female transsexual having seizures just because of hormones. Not likely."
I have to agrree with her. It seems too far fetched.
LR
Click to expand...

I disagree right around my ms i have seizures and its hormone related im sure of it.... others here have the same problems around their ms..

id ask your neuro

love angel
 
renee97 said:
No.
My Ob/Gyn almost laughed. I don't remember her exact words, but it went like:
"First I have hever heard of anyone getting epilepsy over the age of 50, and I have never heard of a male to female transsexual having seizures just because of hormones. Not likely."
I have to agrree with her. It seems too far fetched.
LR
Click to expand...


It's a good thing your OB/GYN is working with the southend! Because epilepsy can happen at ANY age. Mine began at age 47. We have several members here who have also had epilepsy begin after age 50.

Men, women, it doen't matter a lick! Although I must admit, I haven't met too many transgender, so I can't say much about that. :oops:

I doubt very much your hormonal treatments have much to do with yours. You have obviously been taking hormones for some time and if they were going to be an issue, it would have happened much sooner.

:embarrassed:
 
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