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Very Scary Undiagnosed Symptoms-Dr.says TLE. PLEASE READ!

Wed, 07/12/2006 - 10:52
Topic: Diagnostic Dilemmas and Testing
Hello- I'm new to this site and found it in hopes that someone might be experiencing the same things I am. In January or just before, I began having problems comprehending what I read or follow a lecture or story line. I'm 32 and a college student, so this made studying nearly impossible. Up until this point I was carrying a 4.0 GPA and was a year away from graduation. I had to take the semester off because, not only did I suddenly have the aforementioned difficulties, I also had a marked change in memory. I was suddenly constantly forgetful and could not keep track of anything! I also began to feel depressed and unusually tired. Shortly after these problems started, I began having episodes in which I would have this sudden 'weird' feeling come over me. Weird is the only word I can come up with. (It feels as if I was injected with some drug and it was just starting to spread thoughout my bloodstream.) Everything seemed surreal and as if my body was not my own. When I would try to walk it felt as if my arms and legs were weighted down with sandbags- I could walk but with difficulty. At times the floor seemed far away or that I was very tall. Once, the floor looked slanted and I tried to adjust by walking against the slope. During these episodes, I often have numbness in my tongue and palate, as if they're coated with wax.I also detect a metallic taste on the back of my tongue. Sometimes I have numbness in my left arm, other times tingling in my hands. Once I had a burning feeling in my legs as a chemical burn might feel. Sometimes i have a light crawling or itching feeling on my arms. In the beginning I would have startling, rapid changes in mood- sudden crying or laughing that would change minute to minute- crying-laughing-OK-crying, laughing-OK etc.SOmetimes outburts of rage. I usually have a heavy feeling in my chest as if someone's pushing on it and my stomach feels very strange. These episodes are not quick! That's the strangest thing, because as I understand it, epileptic episodes like those of TLE are short. These episodes can last up to an hour before I feel normal again. There's more but to get on with it, I saw a neurologist who thought it might be MS but it wasn't obvious to him so he referred me to a psychiatrist, presumably because he thought I has a panic disorder. The psychiatrist says she does not think so at all but that I'm having some kind of ictal seizure or TLE. She gave me Klonopin-1 mg/day, which seemed to stop the episodes (so far). I now also take 200 mg Lamictal/day as well as 400 mg of Wellbutrin. I had an MRI which appeared normal and am scheduled for another one this month. I'm scared. I don't know what the hell is happening to me. It's as if one day everything's going swimmingly and the next, this! It all cam on so suddenly and without any apparent cause. I did have seizures when I was a few months old- stiff, eyes rolled back- that went away. In high school I had what they termed a mini-stroke- no feeling on left side, inability to speak anything but nonsense and had a recurring picture of a carousel somewhere in front of me. PLEASE, PLEASE I beg and beg and beg you, if anyone can shed any light on this, please respond! It's very hard to live like this. My life is completel;y on hold and my 4-year-old daughter needs her mother back. The unknown is agonizing.

Comments

Re: Very Scary Undiagnosed Symptoms-Dr.says TLE. PLEASE READ!

Submitted by strangeillness on Wed, 2009-04-29 - 16:31

Hi,

I'm 17 years old and started expiercing very similar symtoms to Avalon's about 8 months ago. Everything was fine until approx a year ago, when I started having partial siezures. I had no previous or family history of siezures. I saw a neurologist and was put on lorazepam 1 mg twice a day. The siezures stoped, and everything was good aside from some drowsiness. Three months later my dose was lowered to .5 mg twice a day, with still no problems.

About six months ago, I started having some very alarming symptoms. I would have severe mood swings that could literally be as short as 10 seconds and range from euphoric (laughing) to almost suicidal. All within a minute!!  Sometimes I would get very dizzy and nauseous during the mood swings to the point where it was difficult to stand up. I would also get an intense feeling of being disconnected, and a generalized feeling that everything was wrong.  If I tried to think during the mood swings, everthing seems illogical and disconnected, like in schzophrenia, and I am unable to describe what is happening. I can expierence these severe symptoms one minute, and feel perfectly fine the next.

Sometimes these mood swings would go on back to back for hours, or be isolated daily events.

I had another EEG since the mood swings started , but not during the symptoms. The results were normal, and my neurolgist thinks I'm crazy. He is probably going to refer me to a phyciatrist.

I have recently started taking a muti-vitamin and Omega-3 fatty acids (1,000 mg EPA) daily which are suppose to help with depression and MOOD SWINGS naturally by promoting normal brain structure and function.

 I am also going to buy some amino acids like L-trytophan and L-theanine which promote the calming, stabilizing neurotransmitters Serotonin and GABA.  I have also considered trying KAVA extract and Valverian.

I'm glad to know I'm not the only one with such crazy, tempararly undiagnosable symptoms. I wish everyone the best of luck in treatment and I will be praying for you. I agree with Sunflower, God does not give you a challenge that you cann't handle.

Hi,

I'm 17 years old and started expiercing very similar symtoms to Avalon's about 8 months ago. Everything was fine until approx a year ago, when I started having partial siezures. I had no previous or family history of siezures. I saw a neurologist and was put on lorazepam 1 mg twice a day. The siezures stoped, and everything was good aside from some drowsiness. Three months later my dose was lowered to .5 mg twice a day, with still no problems.

About six months ago, I started having some very alarming symptoms. I would have severe mood swings that could literally be as short as 10 seconds and range from euphoric (laughing) to almost suicidal. All within a minute!!  Sometimes I would get very dizzy and nauseous during the mood swings to the point where it was difficult to stand up. I would also get an intense feeling of being disconnected, and a generalized feeling that everything was wrong.  If I tried to think during the mood swings, everthing seems illogical and disconnected, like in schzophrenia, and I am unable to describe what is happening. I can expierence these severe symptoms one minute, and feel perfectly fine the next.

Sometimes these mood swings would go on back to back for hours, or be isolated daily events.

I had another EEG since the mood swings started , but not during the symptoms. The results were normal, and my neurolgist thinks I'm crazy. He is probably going to refer me to a phyciatrist.

I have recently started taking a muti-vitamin and Omega-3 fatty acids (1,000 mg EPA) daily which are suppose to help with depression and MOOD SWINGS naturally by promoting normal brain structure and function.

 I am also going to buy some amino acids like L-trytophan and L-theanine which promote the calming, stabilizing neurotransmitters Serotonin and GABA.  I have also considered trying KAVA extract and Valverian.

I'm glad to know I'm not the only one with such crazy, tempararly undiagnosable symptoms. I wish everyone the best of luck in treatment and I will be praying for you. I agree with Sunflower, God does not give you a challenge that you cann't handle.

Re: Very Scary Undiagnosed Symptoms-Dr.says TLE. PLEASE READ!

Submitted by MEDICAL INDUSTRIAL HYGIENE GEOLOGIST on Wed, 2009-04-29 - 19:45

Read the New York Times Magazine Feb 22, 2009 the article on the NIH strike force team of doctors who deal with diagnosis of a woman who is 31 yrs old!  To possibly confirm your diagnosis,  Also, I  suggest you make a call directly to (609) 924-4061 Considered by many world over the "worlds authority" on TLE (as listed in "Whos Who of the World 2009)    he'll answer the phone directly-no receptionist! this MD who will answer the phone has had experience with ALL of your symptoms you are talking about but you can always write to him a one page synopsis like you did on this Epilepsy.com story.   Tell him someone referred you to speak to him from "Epilepsy.com" Make sure that you tell him that TLE was the "idiopathic" diagnosis based on your symptoms  (assuming your TLE diagnosis was an idiopathic diagnosis-is it?)    

 

Read the New York Times Magazine Feb 22, 2009 the article on the NIH strike force team of doctors who deal with diagnosis of a woman who is 31 yrs old!  To possibly confirm your diagnosis,  Also, I  suggest you make a call directly to (609) 924-4061 Considered by many world over the "worlds authority" on TLE (as listed in "Whos Who of the World 2009)    he'll answer the phone directly-no receptionist! this MD who will answer the phone has had experience with ALL of your symptoms you are talking about but you can always write to him a one page synopsis like you did on this Epilepsy.com story.   Tell him someone referred you to speak to him from "Epilepsy.com" Make sure that you tell him that TLE was the "idiopathic" diagnosis based on your symptoms  (assuming your TLE diagnosis was an idiopathic diagnosis-is it?)    

 

Re: Very Scary Undiagnosed Symptoms-Dr.says TLE. PLEASE READ!

Submitted by rikk on Wed, 2009-04-29 - 22:28
hi,  i have had a lot of the same stuff,  i have been at it for 48 years.  The biggest things that stick out are lamictal is helping. That is a drug primarily used for seizure control.  i have not figured out the wellbutrin.  I was not allowed to take the drug, because it was prone to cause seizures.(that was a while ago,  things change).  You said nothing about an eeg of any kind.  It can be helpful.  Sometimes it will show seizure activity if you are seizing at the time.  It is kinda important.  They could not find anything until i was 40 and then they found 24 in 4 days.  not a fun time.  6 years later, at a different hospital they were unable to find the activity on eeg, and then the video can into effect.  3 days nothing. 4-7days they said I had a bunch.  They did not want to get to specifics.  I really didn't want to know or i would have pushed it.  After that hospitalization and then review of problems, they gave me the option of a VNS implant.  kinda like a pace maker for the brain.  it you want more information it is here.  You still have a couple of more things to get to the point of qualification for the surg.  It has helped to clear up to some degree my memory and cognitive ability.  If you are interested check the my story page.  not a big deal.  There is hope, you are not alone. and this place is a good one.  Information, venting, or just ole fashion support.  When i was younger they called that being friendly, or even a friend.  We are here to help and where we can, we will.  I know the fear, of work, kids, and life.  I hope we can help.  rikk

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