NeuroTalk Support Groups - in need of relief,

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Dear Larry,

You really have been through the mill with this haven't you; Similar to Porkette I've had seizures for 42 years I was diagnised as TLE with complex partial but they had trouble with what my doc called nervous shakes. Since then that's been revised and I've been late diagnosed with myoclonus too; though with myoclonus which is a type of jerking both sides of my body, by hands, head, neck and feet I've never lost consciousness and it doesn't stop; it's almost like parkinsons but I know it isn't because it doesn't get any worse; but I was dx with leisions on the brain and spikes on eegs. Have you had mri & eeg?

This diagnosis failed to point out that I would have symptoms that were akin to schizophrenic symptoms. Auras, awful smells, confusion, emotionally labile, even something akin to paranoia which is in fact the act of lashing out because of fear when in the process of a sz.

I do know exactly what you are going through and how it's affecting your life, emotions and lifestyle. I urge you to have patience and continue to push for a diagnosis. With the SSI surely there is an appeals process that you can use? Appealing is something you should think about rather than just keep applying; just appeal on the last decision,

Good luck Harry, keep us informed,

Rhian

complex partials diagnosed

Hi Sue,

I'll write you on this thread, as it seems a good way to know where I left off kind of like a blog. Bad news turned into positive news. This week my symptoms became inflamed and made me feel simply hopeless and incredibly angry, my Mother took me to the psych in the morning, needless to say I was in a pathetic shape. I don't like admitting it, but yes I was suicidal and in the heat of the moment stupid things can happen. I told the crisis doctor what has been going on with me, and she said very confidently. "You're having seizures, you have epilepsy, did anybody tell you that before?" I felt I was dreaming her saying those words, because she seemed so confident and she said as much. It was like an about face, I went from feeling perhaps TLE complex partials aren't happening to and therapists babbling on about being a hypochondriac to having all the needles pointing to epilepsy. Wednesday through Friday I didn't know what was going on and felt I could die and it would end the pain, to being validated. I went out to the beach and despite having pain on the left side of my head and a little trouble thinking due to the Topamax, I had a good time. Thanks, for your help Sue. I'm going to seek out an epileptologist and I know a good neuropsychologist in the area.

Thanks,

Harry

Hi Harry,
I think that you are paying it smart seeing an epileptologist and neuropsychologist. Take my word they will be able to help you more than any psychologist and they understand what areas of your brain are being affected and making you feel the way you do. You should get a PET and SPECT scan done to see what's going on in the brain. Here's wishing you well and May God Bless You!

Sue

Hi Sue and anybody else that may be able to help,

Things are still really tough and I'm searching for an epileptologist in the Chicago region that might be able to help me out. I had an appointment with Dr. Tao an epileptologist at the University of Chicago, but it seems that because my insurance is not accepted, thus I cannot be seen. I feel like I'm nearing the end of my rope of coping. The psychiatrists at the university of Chicago coldly let go of my case, I'm desperately trying not to get into a suicidal state of mind. I don't have transportation or a job so I'm fearing becoming isolated this winter or winter at all. I was hoping fair weather would allow me to ride my bicycle. There are good things in my life as well, but I feel like I've been at the boiling point for the past decade with no way out. If anybody has any suggestions, I much appreciate them and will consider them with full attention as at this point I need true solutions.

Hi Harry,

Don't give up no matter what you do. I know it's hard but try and think of the positive things in life. I'm sorry to hear that the Epileptologist wouldn't take your ins. I've had a hard time with my ins. allowing me to see a dietician so I can go on the ketogenic diet. I've made the decision to do it on my own.
In regards to the depression and suicidal thoughts a lot of that comes for having epilepsy and well and the AED's (seizure meds) a person takes. I also wonder if winter weather makes some people more depressed.
Is there any chance you can get a bus, or gadabout, or any volunteer business that will pick you up and bring you home? I've had to take the bus at times and yrs. ago the train. Try and keep yourself busy so you don't have so much free time on your hands to think about any negative things. Also if you like to write or listen to music this has been proven to help people when they are in a depressed mood. I wish you the best of luck and I will be praying for you. May God Bless You!

Sue

Quote:

Originally Posted by Morganomics (Post 640035)

Currently I'm not on any meds, although I was taking Prozac and Librium, recently prescribed Perphenazine, yet no change in symptoms. I've taken depakote, lamictal, topomax and tegretol, I was on a therapeutic dose for both depakote and tegretol but not the topomax or lamictal. I had a terrible rash from the lamictal, which is sad because I thought it might have some beneficial use.

I live in Northwest Indiana near Chicago, which I can see the skyline from our beach and its quite beautiful. I've been seeing a psychiatrist for eleven years, switching every few years when I'm fed up with receiving no results. I know what I feel is more than just simple depression or anxiety and I want to be in control of my life, because I feel that I never have been.

I've seen three neurologist, all seem like empirical robots like they can't read between the lines and consider all of the symptoms as being from the same genesis. Thus one neurologist diagnosed me with narcolepsy, and migraines, while others simply advice me to see psychiatrists.
Luckily I have one very interesting psychiatrist who put all my symptoms together and diagnosed me with complex partial seizures or temporal lobe epilepsy. That diagnosis had been running through my head for at least three years, and my previous psychiatrist had suspected the same in 2007-2008. Unfortunately my current psychiatrist won't give me the AED only antipsychotics, which leave me even worse.

My Deja-Vu auras possible seizures occur at night. My heart begins to race and I start to get a funny feeling of euphoria, I feel like I'm floating with euphoria, and begin to see shapes and colors in my head that I feel I've always known as if they were there at my birth and I'm remembering my birth almost as if we all see god at birth and soon lose the amazing feeling it is to know a cosmic truth. I can calm down the event by getting up and walking. I've also had sleep paralysis with funny / frightening experiences, the one that stands out in my mind is the time I saw my mother how she was in the mid 70's before my birth with classic 90's gray aliens tapping at my window.

On New Years day 2000 I fell unconscious and had the strongest aura of my life. I felt as if I was having a head rush and fell to the floor. I was conscious or at least an altered form of consciousness trying to move past the strange deja vu experience along with strange perceptions of my movement like my limbs were moving quickly even though they were frozen.

I also have desperate daytime confusion and a desperate need for sleep, which I have had since a teen.

I feel like my thoughts are forced, its hard to make smart detailed decisions my thoughts are painfully forced and I feel I am sloppy emotionally, intellectually and motorwise. Currently I feel the left hemisphere of my head is in physical pain and feel my thoughts are distinctly unmistakably being forced from the left side. I've looked up forced thinking on google and have found a definition which matches my definition of the experience, but I am not sure if they are the same. I also have intrusive ocd like thoughts and have a love for art and design, which may be signs of Geschwind's personality.

My insurance won't cover my visits to the University of Chicago, which are quite expensive, but I've made and kept the first appointment anyways a terrible thing to do I know but I feel so desperate if I can get better then it was worth sidestepping the health insurance route.

I want to just get away or go to a safe place where I can be rehabilitated and released into the wild again. Financially my life is a wreck with many bills and student loans in repayment. I've filed three times unsuccessfully for SSI, so I've just quit the process entirely.
Well I believe I should end it there. Thank you for your advice as I feel even though it is good to read about TLE and mental illness on wikipedia or a reputable site, receiving advice from a person is wonderful.

I urge you to not quit the process of filing for SSI. I was also turned down 3 times. I went to a SSI lawyer who only gets a percentage of the lump payment if he obtains SSI for you. I had applied for 2 years---got a lawyer and the judge approved it in 2 weeks!! I wouldn't have survived without it. So please don't give up. Best wishes--Hutch