Newly Diagnosed, Already Exhausted

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Beyond greetings, I'm really not sure where to begin, how much to include, or even what to say regarding my convoluted history with epilepsy. I'm not yet sure what to feel. I spent fourteen years (exactly half of my life) coping with bizarre episodes I now know were seizures. I was finally diagnosed with left temporal lobe epilepsy about two weeks ago. I think it would be fair to say that since then, I've been having some trouble processing everything.

If my memory serves me correctly, (and admittedly, it's a bit shoddy), my first event occurred when I was about fourteen years old. Like any sane and normal teenager, I was deeply interested in the paranormal, and I thought what was happening was best explained as a series of OOBEs. Slightly embarrassing to consider now, but there you have it.

Throughout childhood and into my teenage years, my father was extremely abusive. Consequently, I developed some problems, most of the rest of my family rejected me, and I lived in and out of various psychiatric facilities, I suppose as an alternative to becoming homeless. During the course of my "treatment," I lost count of the myriad psychological problems and diagnoses that were misapplied to me. (I'm not sure all those drugs were helping me with my arithmetic, either.) I imagine the shrinks must have grown tired of volleying me around. Then one day, when I had a seizure during a therapy session, they found something new and exciting to talk about.

"Pseudoseizures" are, in my opinion, pseudoscience for which treatment options apparently include what's tantamount to being slapped on each cheek and plainly told to snap out of whatever funk has you whining for attention this week. No, how are you REALLY feeling? Here, have some more pills. This one will help you sleep. Oh, you're feeling drowsy? Here's another antidepressant. No, don't stop any of the others you're taking. They work best together. Hahaha!

Not long after I'd sworn off therapy, I had a rather severe cluster of seizures that landed me in the emergency room. The doctor who saw me took one look at my chart, cracked up, called me a drug addict, and asked me to leave the hospital so he could treat patients who had real problems.

If by some miracle I wasn't crazy then, I certainly am now.

Curiously (or not), I discovered my mood drastically improved (stabilized) as I weaned myself off the different medications I was taking. But over the past few years, I've been experiencing seizure episodes more frequently and regularly; several seizures a day over the course of several days. As it's been, I can expect to dedicate about one week (or more) of each month to these events.

So much has happened and so much has been lost over the course of fourteen years. After getting bounced around a bit more, I was finally sent to see an epileptologist. Needless to say, I was a little less than excited when he recommended going into the hospital for video EEG monitoring. Well, I'm glad I went, because now I know.

I think what I'm looking for right now is a place to exchange ideas about how to manage the problems associated with epilepsy. It's so strange that the stigma surrounding a disease would, in some circumstances, be more challenging to manage than the disease itself.

Anyway, nice to meet you. :bigmouth:
Hi dejavudu, welcome!

Sounds like you've had a pretty unpleasant journey towards your epilepsy diagnosis. Unfortunately that doesn't seem to be all that uncommon. A number of the people here have been enormously frustrated in dealing by there interactions with neurologists, emergency responders, and others in the health care professions. I hope things get better for you from here on out.

In CWE you've found a super place to "exchange ideas about how to manage the problems associated with epilepsy." Folks here provide advice, feedback, insight, support, empathy... I hope you feel free post any questions, search the archives, and vent as needed.

Nice to meet you too.
I must say up front that I am not the one having seizures, my daughter is. She was diagnosed at the age of 14 as having epilepsy and on the meds she went. Being the good parent I wanted additional opinions so we went to a "top ranked teaching school". They said they had seen many cases like hers and she was diagnosed with PNES = psychogenic non epileptic seizures. Thankfully for her sake I knew there was more too it, but I didn't know what. We went back to doctor #1 who truly didn't have a clue about hormones and seizures, and nutrition and seizures.... so I ventured out on my own.

Off meds, we drastically changed her diet, and did a year of neurofeedback. We have found that she does have a blood sugar imbalance, and it seems to affect her hormonally. Keeping a journal and making sure she is eating for brain and body health her seizure control is improving.

There is a lot of anecdotal evidence that poor nutrition can cause psychological / neurological disorders. There is indication that there is a connection between gluten sensitivity and schizophrenia. In fact there are some doctors that say celiacs should be considered with seizure disorders.

My daughter is no longer on any meds she has been able to go for 5 months without having a seizure, and we are very hopeful that this will continue to improve.

It is certainly something to consider, since you make no mention of it what so ever. It isn't a quick fix, but a long term therapy, that treats the whole body as the complex system it is.
Thank you both for welcoming me.

I've been browsing around a bit and have already found some helpful information. Also, I've been enjoying some of the photographs and artwork people have been sharing.

Hopefully, I'll have some experience worth contributing. I'm looking forward to getting to know everyone, here.
Welcome, dejavudu!

You've had a lot happen in your brief life on Earth! Only reason I say this is is that I'm a dozen years older than you...and I have trouble with arithmetic, too. Spelling, writing & reading, no prob, but math tends to frustrate me 'til I'm near tears, if not already crying. Anyway, enjoy exploring the rooms, and feel free to talk with people by leaving messages. Bernard (or, Mr. B) has built a beautiful mansion for us. Take care, dejavudu. :)
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Always nice to have new people to chat with! I hope your next 28 years goes easier than the first! Hang in there, this is a great place to come when you need anything. Good luck!:hello:
Hi dejuvu,

Sorry to hear of your exhausting experience with seizures already, but so glad you've found us. Please hang around and make yourself at home here.

I do happen to agree with your statement about "pseudoseizures". And coming from an abusive home, that could have something to do with your seizures, thus pseudoseizures.

And don't let that "stigma" hang onto you. If others are bothered by it, it's their problem, not yours!

Welcome! I'm so glad you found us.

Love your screen name!

I have Temporal Lobe Epilepsy, too. The seizures are so weird. My seizures began at about the same age as yours, more or less.

It sounds like your journey to diagnosis WAS truly exhausting. Doctors say mental illness because they are not trained in epilepsy, and/or psychogenic seizures when they don't know how to properly diagnose seizures.

I see an epi who is one of the best in the country (despite lack of access to him and sometimes a rotten bedside manner). He says despite negative EEG's, he's pretty positive it's epilepsy. I don't understand the reasons, but he says there are clear indicators that differentiate it. A good doctor is so key, and it sounds like you've got one now.

I'm so happy you are off the drug cocktail that the various shrinks had you on. Temporal lobe epilepsy is often misdiagnosed as mental illness. Most mental health care professionals hear there are hallucinations of various kinds and think "schizophrenia." Really they are seizures. I've read plenty of stories people have posted online. The shrinks don't realize one of the big difference in symptoms is that people with seizures have hallucinations that come and go. Mostly go. People with schizophrenia have them almost all the time. Dumb docs. Then there's the eeg's, which most docs don't know how to read properly to identify epilepsy.

I've had it with shrinks, too. The psychologist I saw said I was deeply depressed and that the depression was causing my seizures. Idiot. She'd known me about 1 day and didn't know my medical history and didn't listen when I tried to tell her. She tried to get me to go on antidepressants. Needless to say I'm not going back.

I love my epi. He's known me for awhile now, and he's seen me when I'm not depressed, which is most of the time. He knows that the deep depression that I am in right now is due to my current anti-seizure medication, and he's in the process of switching me to another. My seizures are under control with trileptal, so I hate switching.

I applaud your tenacity and bravery in finding the answers to your seizures. You are really brave, and really strong. :clap:

Take heart, and rest. Now that you have the answers, things are about to get much better.
Thanks, everyone, for such a warm welcome!

I think it's fantastic it seems like there's already so much to talk about. I wanted to let you all know that my replies might seem really short sometimes (kind of like the one above). That's because my home Internet access is limited and I'm not always able to snag a connection on a public network. I'm not trying to ignore or otherwise offend anyone. On the other hand, you might learn to treat those shorter replies from me as a blessing. I can be a little long-winded from time to time, sometimes to the point that you'll be begging me to shut up. ;)

It's a little funny to think about in retrospect, but of the more common psychiatric diagnoses, schizophrenia is actually one of few I never heard come up in the mix. I do get severe olfactory hallucinations with my seizures. Really, they're enough to quite literally knock me on my butt. But I always knew I was the only person smelling what I was smelling. Any of the weirder stuff that came along with my seizures probably was attributed to either mania or a generic sort of psychosis. Anyway, after meeting and getting to know several people who do have schizophrenia, I feel like what they're suffering with is something at least a little bit different than what I deal with on a day to day basis. There are, unfortunately, a lot of bad doctors out there.
Thanks, guys.

Hmm...stickiness...I think I might need to do a bit more reading about this. Interesting stuff!
Hi Welcome, glad to have you here.

Bernard made the forum out of love for his wife Stacy. That love permeates throughout the whole forum.

I do not talk as much as some here. That is all right if you do.

Again, welcome!!
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