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Old 12-26-2011, 11:35 AM #1
Cblaylock82 Cblaylock82 is offline
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Join Date: Dec 2011
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10 yr Member
Cblaylock82 Cblaylock82 is offline
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Join Date: Dec 2011
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Default They keep saying its migraines and silent siezures

Im having a hard time I've been in and out of a few phyc units the past month the doctors keep saying the same thing. I've had a clean MRI with due contrast a cat scan and to EEGs one was sleep deprived they are all normal. They gave me topamax which caused severe side effects I had an amnesia like episode on day 2. Ive also been on depakote which have me weird thoughts and dreams. I've been feeling confused disoriented out of reality my head also has some weird feeling also it feels sometimes like I have extreme pressure. My thoughts are messed up I have memory loss lingabd short term feels like I also have a memory block. I am on short term from work since I was messing up so bad I can't drive my appetite sucks, I get dizzy light headed my logical thinking is gone my eye sight is funny feels like I'm in a tunnel. I was ok 2 months ago and I was driving home and starred feeling weird. I should mention before this I was having issues with seeing floaters in my left eye for a few weeks before this happened I saw an ophthalmologist and I was checked out fine. I should also mention that I have been to a neurologist and a few phyciatrists and they are baffled I've also had all the blood work done to rule out other stuff it's all normal someone please help me and let me know I'm not alone
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Old 12-26-2011, 02:36 PM #2
ginnie ginnie is offline
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ginnie ginnie is offline
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Default Dear Cblaylock

You are not alone. There are many people who have undiagnosed conditions. The doctors tell them it is all in their heads. We are a mind body connection, and when something is messed up with ourselves, we know it instinctively. Even if every test came back normal, that does not mean there isn't something going on. I knew I was sick before the doctors ever made a diagnosis on me. Several times over in fact. It took me 6 years of complaining about not being able to swallow before they actually did some investigating, and found out yes, I had a big problem.
Now what to do you wonder.? First don't give up. My real dianosis came from Mayo clinic, where I went after about 10 doctors didn't know what was happening to me. They are the leading diagnostic center. You might want to consider a referal from your PCP to that clinic. There are two, MN and Fl.
My condition didn't have many options and I got into a trial study for auto immune problems, where my problems were found. I do believe they can find just about anything at these clinics. You may have symptoms that will show up later in testing. I know all of what you are going though is very difficult, and you start to question your own sanity. Try to be at peace, and move forward in your investigaion on your own also. Start by accessing a medical research facility. Columbia University medical center, in Columbia Mo. has an outstanding library for research. You may be able to access this on line. Investigate every symptom you have, document all your tests so far, and keep an accurate journal of everything you experience. The more you gather the facts in writing, the better the doctors will have something to go on. In other words keep all your medical records. If you choose to go to mayo clinic as I did, you present them with the entire history of what has happened to you.
When my symptoms happened I drove myself to the ER room. I knew something was happening to me as I lay there waiting for a doctor. I felt weird, and my scalp was tingling, and I had the chills. 8 weeks later all my hair dropped out in clumps. My first auto immune disease appeared just like that, after the ER could find nothing wrong. So I believe you, and hope that you will continue until you find out what is wrong. I am here if ever you need to talk, vent, or let me and neuro talk try to help. I hope others will chime in to help you along.
I do so hope your new year will bring a resolution to what ever is going on with you. My thoughts and prayers are with you. ginnie
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Old 12-26-2011, 02:37 PM #3
Porkette Porkette is offline
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Porkette Porkette is offline
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Hi Cblaylock,

Welcome to the forum! A person can have a clean MRI, EEG and other tests and still have epilepsy in some cases. Often times brain damage is to deep in a persons brain and the tests won't show it so a person might have to have a video e.e.g. (veeg) in the form of surgery where they drill holes in a person head a put a few depth electrodes on the brain and you are on camera around the clock while in the hospital. You might have to have that done. I started having migraine headaches when I was a kid and a yr. or two later they led into epileptic seizures. I have absence (petit mail) complex partial, and simple partial seizures. I had surgery done twice to help reduce my seizures. I took both topamax and depakote yrs. ago. topamax increased my seizures like crazy and Depakote worked great but my body became immune to the drug I was on it for so many yrs. The Depakote is known to cause anorexia where a person can either gain or lose weight. I lost 75 lbs. in 4 months while on the drug. Dizziness, depression, and memory loss are all part of epilepsy. My best advice to you is to go to an Epilepsy Center which are usually a university or large hospitals. Have your family Dr. refer you to an Epileptologist instead of a neuro. an Epileptologist deals directly with epilepsy and knows much more about it than any neuro I've ever seen and I've had epilepsy for 39 yrs. Instead of seeing a physicatrist you should see a neuro physciatrists these Drs. are trained in both fields and can study your brain much better than a physciatrist alone can. Start taking vitamin B12 1000 mcg. once a day, stay away from anything with nutra sweet in it because this can fire up the neurons in the brain and trigger seizures. From what you have mentioned it sounds like you may be having possible aura (simple partial) seizures that are coming from the opptical lobe of your brain. Ask others around you if they notice a daydream look on your face, if you smack your lips, and wander around not realizing what you are doing while possibly having a seizure. If I may ask do you feel tired or confused after a possible seizure? If you or anyone notices this then you are having a certain type of seizure and it should be looked into with more detail with an Epileptologist. Here's wishing You Well and May God Bless You!

Sue

Last edited by Porkette; 12-26-2011 at 07:36 PM.
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