Video EEG, SSI and becoming independent

[morganomics]

Autumn is blowing into the Midwest, we must gather our nuts and if we are nuts we must gather some peace of mind before winter. Well here I am again in the same situation, though a few things have changed. I had a four day video eeg last week at IU hospitals in Indianapolis. I want desperately to feel better and I feel a big part of becoming well is knowing what is wrong. Some good did come from the EEG even though the entirety of the data has yet to be combed through by the neurologist. I felt a bit more stable while I was in the hospital, a routine of morning meds, shots and ordering meals kept me in a decent state of mind, but the vacation of course always has to come to an end. The young amiable yet slightly cocky neurologist told me that there weren't any epileptiform activity during the duration of the test though he was quick to say that even if there wa a lack of evidence it doesn't rule out epilepsy. He also noted that I went into REM sleep too quickly that it might have been because of the sleeping situation, though I felt really rested. Falling asleep at the drop of the hat along with all the other narcolepsy/ cataplexy symptoms I most definitely experience along with the occassional aura. Even college/high school teachers and friends have wittnessed my strange sleeping events it was incorporated into their view of my personaility for better or worse. I'm exhausted, extremely poor waiting for SSI to kick in and so frustrated it makes me feel self-destructive or even suicidal. I have been really sensitive to caffeine since I returned from the hospital and it makes me really agitated, so I'm drinking water at Starbucks instead. The things that most make me upset at the moment is my lack of income, which shuts my phone down for a few days, the lack of cooperation from my mom to lend me her vehicle when I need help delivering furniture I design and build. Its like I have to take so many steps back in order to move forward, it just doesn't make any sense. The struggle of always striggling is wearing thin and I can feel that dark impulsive feeling setting in. I wish there was a place I could be rehabilitated, where a social worker would help with my social security situation, and where I could work on housing and moving forward. I just sink all the time and I cannot hold onto gains, I admit I am powerless to do this on my own and that I need level headed help to save my life. Any ideas or advice? I'm ready to listen and take on new approaches. Thanks.

 

[momof3boys]

I read your post and wanted to write and say to hang in there! I had my first VEEG in March of this year. I was there for four days, got released on the fifth day. I ended up having simple partial seizures, which was totally new to me, since I was use to having complex partial seizures and grand mal seizures. But Im so glad I got to have the VEEG. If it wasnt for the dr suggesting it, I would still be on two seizure medications, and not one, like I am now on. I tried to get my SSI, but was denied. Everyone keeps telling me to reappeal it and try again. But when I have kids to look after, and such a crazy schedule, its hard to even imagine to try to for it again. I just wanted to let you know where all here for you.

 

[Nakamova]

I wish there was a place I could be rehabilitated, where a social worker would help with my social security situation, and where I could work on housing and moving forward.

Let your doc know how you're feeling. They should be able to direct you to someone in the hospital and/or in your local public health department who can provide assistance and advice.

As Kristin says, hang in there. We're rooting for you!

 

[morganomics]

@Kristin, I'm glad they found epileptic activity as it can frustrating when the EEGs don't catch too much and meds can be tailored to your specific type of seizures. Yes appealing social security claim takes a lot of energy mostly mental, but since your neuros have clear evidence of epileptic activity, your case should be an easier win if you contact an attorney. I have an attorney that works with the mental health enter I go to and they only take out a small bite of your check if you get approved. My case is still in determination because the determination board wanted to use my veeg and follow-up appointment to make a decision. If I could get my symptoms down by 40% I would want to work again, but I understand I need to build a strong foundation first, as I want to break the cycle of work--->breakdown. I'm coming to terms with the fact that there are no quick fixes, or perfect Wizard of Oz. doctors, but I know I'm not the only one and that things could be worse, I just want to get over the hump into a good stable direction. I found a book by acclaimed neurologist V.S. Ramachandran, "The Tell Tale Brain," that discusses a lot of temporal lobe epilepsy symptoms a lot of neurologists want to push into the psychiatric category or dismiss. I have this fanciful idea that if I was to be able to have a consultation with him that my life could really change. Anyways, enjoy the weekend ya'll thanks for being there!

 

[momof3boys]

I'll have to look into it more. I didnt even think about them using my VEEG for getting SSI.

Yeah, when it comes to certain symptoms involving temporal lobe epilepsy, I went through a tough time after getting home from having my VEEG with my neurologist.

I was born with Epilepsy, and wasnt dx'd til I was 18 months old. It was then that I was put on medications, and all my life Ive had complex partial seizures and grand mal seizure growing up. Ive been on one medication, then to another. I will have to talk with my mom on what different medications I was on during my youth years. But I recall turning 18 or alittle before then, is when my dr decided to try me on Keppra and Carbatrol. My last grand mal was in 2000-2001. It happened after I went out with my best friend, who came into town to see me. we went out that night having a good time, and that morning, my mom found me after I had taken a shower, on the floor with drool coming out of my mouth, and my eyes rolled back into my head. She knew right then I had a grand mal. She heard a thump and thats when she got up, thinking she better check in on me. I must have hit my head on the dresser as I fell when I had the seizure, cause I had a huge knot on my head after realizing what took place. I live in Nebraska, and decided to go to Omaha to see a really good dr that we had heard about. I started seeing this neurologist around 2008, and then last year he got transferred to another hospital, so they put me with his partner. He is the dr I am now seeing. If it wasnt for this dr, I wouldnt have had the opportunity to have a VEEG. It was scary, but Im glad I had it. Instead of being on Carbatrol and Keppra, Im now only on Keppra and doing good. But what got hard after the VEEG was that when he saw I was only having simple partial seizures during the VEEG, and not the complex partial or grand mals that my mom reported to him that Ive had over my many years of life, he questioned if the seizures I was having really were "true seizures" and not Psycho seizures". Now when I started having these simple partial seizures in the hospital, I was aware of what I was feeling during these seizures, it scared me and I didnt want to keep having them. Going all my life having complex partials or grand mals where youre not consious during them, and then going to simple partials where you are, is a weird feeling. My dr first said that I might have outgrown the bigger seizures and was left with simple partial seizures. The EEG was coming back with seizure activity, but it wasnt picking up ALL of the seizures. So in his mind, he was thinking this was all in my head "somewhat". He set me up with a psych dr, and I had three appointments with her. After realizing that the Keppra was controlling my seizures, and if the dr was right, and the seizures that he was thinking that were not showing up, were in fact Non-seizures, then I would be having them. But I wasnt. And that was the first time in my life that a dr ever took me off cold turkey off any seizure medications. He had me take my last dose the night before I was checked into the hospital, and I went the first day with no seizures and no medications. It was the second day and into the fourth day that I was having seizures and had no medications in me. So all in all... he jumped to conclusions too quickly and didnt take into account how my body will react to being taken abruptly off my seizures medications, like it never had before.

I just saw him August 31st and he admited I was a rare case. Instead of having alot of problems with Keppra, like the mood swings, changes, etc. I am completely fine with it. Doesnt bother me at all. When he tried me on Lamictal, thats a medication he said that was suppose to help relax me. But it did the opposite for me and caused me to be depressed, and have terriable mood swings, along with having an allergic reaction (swelling in my neck glands and terriable sores).

So everyone is different. Not all drs think they know it all too. I had to proove that my dr when I told myself Im going to keep going back to that psych dr and let her send him the notes and let him see for himself she even said I wasnt having non-epileptic seizures. Like she said, Seizure medications cant control Non-epileptic seizures, they can only control epileptic seizures.