In recovery, not remission PLEASE READ

PLEASE TAKE THE TIME TO READ ALL OF THIS; IT’S VERY IMPORTANT!

First, a little background. Last Monday I had a MASSIVE seizure where I dislocated both shoulders and tore a muscle in my back. The ER doc was unable to attribute it to anything, and it was my 5th or 6th seizure I was hospitalized for. He diagnosed me with epilepsy, which requires 2 seizures that are unable to be explained. He sent me home with a 90 day supply of Depakote at 1000 mg/day. This was after a consult with a hospital neurologist. He instructed me to cease all antipsychotics, as he believed my hallucinations were electrical misfirings. Fast forward to last Friday. I went to see my neurologist and he did an EEG and found I have temporal lobe epilepsy. This finding made him draw the conclusion that my psychosis was caused by a misfiring in the temporal lobe, which is responsible for processing sights and sounds. Yesterday (Monday) I saw my GP to draw blood and do a full blood workup. He checked my CBC, liver panels, lipids, and Depakote levels. The therapeutic range for Depakote is 50-100 units per whatever. Mine clocked in at exactly 100, meaning I was getting maximum benefit without toxicity. My cholesterol was down, but the most exciting thing was a reading call VDL. I have no idea what it stands for, but it is a rough estimate of how long you will live, barring unforeseen consequences/illnesses. My reading was WAY down, meaning my life expectancy had shot UP.

Now for the cool part: recovery. I have not had a single hallucination or delusion since my seizure and the initiation of the Depakote. My thought process is lucid, intact, and concrete. I have no thought disorder. I went to a birthday party on Friday. While it was a karaoke party and I did not sing, I joked, hung out with, and socialized with the other 8 attendees. No booze or cigarettes. I had a friend come over today and we went swimming. She remarked at how well I was doing, and that I seemed like a new person. Also tonight, I went to the pet store which is a close-knit shop, and everyone there knows me by name. I spoke to the owner, Dale, who loves me because I spend so much money there, and I also spoke to Jon, my friend, and the store’s manager. I started talking to Dale, and he seemed to be holding something back. When Jon came to the counter as I was getting ready to check out, Dale said he didn’t want to say anything, but he thought I was doing the best he’s ever seen me. Jon echoed Dale’s statement, and said he saw life in my eyes, and he could tell I had made a remarkable change. He said I went from being a quiet sulking person, to a vibrant person full of life and energy.

For the first time in literally 20 years, I am sleeping without a sleeping pill. I think back to the days when I was on 80 mg of Haldol and stared blankly at the ceiling. I overslept, was overweight (my weight is coming down too), and was a lifeless ball of coal. Things are going so well for me right now, I thank my lucky stars.

I’m not trying to boast, far from it. But I wanted to share my story because you never know; there may be an underlying cause for all of you here who DO suffer from schizophrenia. I’ve been there, done that, and got the medal. I want my story to be an inspiration for those of you who feel like there is no hope. I battled sz for 20 years. I’ve never been so thankful to have a seizure…it changed my life. And while I am fresh into recovery, my neurologist and GP have advised me to not look back and continue driving forward. My new goal is to buy a condo. I will have to save a bit, but it can be done. I’m tired of living in an apartment and only having rent receipts to show for it. Both of my parents are dead. My mom died before I got sick, but my dad saw me at my worst. I’d like to make him proud and become a homeowner.

In closing, I’d like to say I admire the people on this forum who are so talented and full of determination and stamina. It is a damn tough illness to battle and EVERY SINGLE ONE OF YOU needs to hear that I care, and wish you the best possible recovery. I understand the daily grind of taking medicine that makes you feel like crap, but I admire those of you who are medication-compliant and tough it out, wanting a better life through the best science has to offer: meds. And while they may suck at times, they are better than the alternative. I will stick around these forums because I’ve made friends with people here, and there are a lot of damn strong people on here. Through no fault of your own, your brains are wired a little differently, and it IS NOT YOUR FAULT. I encourage each and every one of you to continue fighting and never give up. May you all someday find peace.

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Good post Alien. I guess luck is relative. But I would say you’re VERY lucky. Congratulations.

Thanks @77nick77. I know you struggle at times, but you are an inspiration to us all. Please continue to fight the good fight,

Thank you alien99 for putting such a nice post there. I am glad you feel much better, But I am not convinced you have recovered. I think as least six months to one year would be a watchful time. Just be careful.

However I wish the best outcome of your health for you. Keep our fingers crossed.

@anon40540444,I am bloody sleepy,I wonder which test should I get checked for as I might be the same as you,have got other reason and not really schizophrenia,very good story and congratulation

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I was checked for EP but I don’t have it. I’m happy for you! I keep my fingers and toes crossed that this was the matter with your brain.

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Absolutely incredible, a life changing experience to say the least. I am really pleased that you have answers @anon40540444 and can continue living your life, now on the right meds. I wish you continued success and happiness -

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I feel weird saying… congratulations on that seizure. But this has really turned your life around.

It’s amazing to think that you have been fighting this for 20 years… and now it’s all changed.

You have paid the dues, and now your free.

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I hope it really is temporal lobe epilepsy. That would be great! I can’t believe I’m rooting for epilepsy, but at least the meds should work then. It is hard to get schizophrenia meds to help all your symptoms, but if it is epilepsy you might be lucky! I hope the meds work for you! I am trying to figure out if I have a weird form of epilepsy. When I use pliers, scissors, or do rainbow looming and I slip, my eyes bounce all over the place like when you roll dice, and I can’t see for a few seconds. I will talk to my doctor. It’s not an all out seizure but it is really weird.

Alien-I am SO happy for you! Heres to the your future! My son has been having seizures off and on for awhile-though they seem to be getting more frequent. Cant get him to go see a neurologist who wanted to do some other scans ( i guess a more in-depth MRI ). He had one MRI which showed nothing-so they wanted to do a different one. I hope my son will get this done. He tells me he already knows why he had seizures-plus, I think he`s afraid of what the doctor will tell him…

Do you know exactly what part of your temporal lobe the activity was found in?

3 years later lol

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