Discussions By Condition: Brain conditions

Sick feeling brain / No diagnosis

Posted In: Brain conditions 1 Replies
  • Posted By: Anonymous
  • October 31, 2006
  • 11:32 PM

About two years ago my brain started to get a "sick" feeling. Kind of like your brain feels when you wake up with a hang over. It never let's up except when I sleep and right after I take my medicene. I take lorazipam, Lamotrigine and zonisamide. I have jerking motions mostly when I am completely relaxed as when I am falling asleep. I often have trouble remembering words and processing information such as how much change to give back after breaking a five dollar bill. I find it nearly impossible to double task such as driving a car. I often felt as though I was going to have a seizure. Several times my face has felt as if I had a stroke but only slightly drooping where it was not noticable to anyone but me. I did have one very mild seizure. I was diagnosd by my Doctor as having medial temporal Sclerosis as they found some minor disturbances on my EEG and the radioligist found a dark area on the left temporial lobe. I was sent to a Doctor who specialized in this condition who admitted me to the hospital for evaluation for brain surgery. I had two large seizures the very first night. I have never had these kind of seizures nor have I had any since. They were negitive on the EEG. I think that was because they were caused by withdrawal from Lorazipam (Activan) not by my condition. I had a period of Todd's paralysis following each seizure. The specialist diagnosed me as having psuedo seizures and now both docs are not really treating me. I feel I got the diagnosis because they could not figure out what was wrong with me and felt it a waste of time.I am still sick and not sure where to turn or what to do. Mean while I am unable to work and am slowly losing everything I have worked so hard to get. I have had a CAT, several MRI, a couple of EEG's, but I have never had a spinal tap. Any suggestions that anyone could give me?

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  • Sorry to hear your concerns ... first and foremost, be persistant with your doctor if your symptoms do not resolve, despite how tired you must be of all of this. I have a question... and if the answer is YES, you may want to consider something I just wrote to another after experiencing a head trauma. Do you recall having any type of injury to your head? Were you involved in an accident around the time all this began... ??? I ask because, from what I just read of your posting, your symtoms sound very (VERY) familiar to what I had following a bad vehicle accident... and the revolving doors of doctors for over a year before finding a roadmap! Actually, symptoms I still have for that matter...although I did not have the medicine complication and resulting seizures...but the verbal, concentration, multi tasking, jerking limbs as I fall asleep or get very tired and relaxed, speech probs, etc, etc etc.... I eventually lost my job as I was put out on disability and even lost my license eventually, the cummulative effort of trying to return to my old life got harder the longer I tried... fatigue overwhelming as well as the other "problems." I too feel as though I have lost every thing, I can tolerate very little OVER STIM anymore either, so even malls and shopping are limited too. Concussions after injury do take time, and you hear all the time of people having them and having full recoveries. But sometimes, after an injury to the brain (which can be from actual injury, but chemical injuries as well can cause brain injury-- and will cause similar symptoms). Sometimes people do not even realize the relationship between injury and symptoms. So what I am suggesting officially, you might want to look into what is called a Traumatic Brain Injury (TBI)...when a concussion does not resolve itself, but it is OFTEN over looked. And YES you can have a normal MRI... TBI's can be mild, moderate or severe... and you CAN LOOK fine... but have all the cognitive, speech, and other assortment of symptoms we've mentioned.I say this as a caution only - but I was drawn to your note because I understood the sense of frustration I noted in your posting from getting NO ANSWER to work with...as well as the all too familiar symtoms you described...This potential answer is not necessarily what folks might see as good news, but I like to at least know what I am working with, to make it better where I can...So MAYBE this will help you.I was in a nasty car accident 3.5 yrs ago. I was knocked out, experienced headaches that persisted even lo-grade long after the initial days of unbelievable pain, as well as dizziness, a "fog" that never cleared...Even though I was told it would pass, and by the 6mo mark, my EEG looked good too. But things were getting worse the harder I tried to be back to my old life....felt as though I had taken 20 SAT exams every day, just too tired to think. I had other disturbances too, incl memory, sleep, speech, ringing in my ears, visual scan probs, visual blurriness that would come and go, multi task issues, driving probs, numbness in my face, even told my one side of face sags a bit when very fatigued... I have never heard any one else describe that as you did - like me. I also have had balance issues, a sleep disorder, and have recently learned my slow digetion abilities are also related...Plus not knowing what was wrong def made me anxious, as did not knowing what to expect of myself was very upsetting. Most doctors just shrugged during that first year... it was sad, and I shed a lot of tears. As sad as it was to eventually learn the permanent nature of it in my situation, which took a YEAR to get a diagnosis. This, even though I was told I had a closed head injury and/or concussion and severe whip lash the day of the accident... AND I reported my symptoms to EVERY doctor I saw for that first year, with little help... and a lot of problems I had no answer for... incl just knowing I was not right... and THAT FOG... aarrrgh... I never felt totally awake. It is a BAD feeling...and worse when no one can tell you what is wrong! Granted, I sustained multiple traumas in one accident, but there are VARYING degrees and symptoms one can get from a head injury. Only your doctor can tell you for sure, as well as time as to whether you will exp a full recovery or have any lasting effects. OR, if this even applies to you. OFTEN though, even mild head injuries can cause problems after long forgotten that there was an injury... But in the meantime, besides looking in to it with your doc should your symptoms persist... I might also suggest you, or others with head traumas to please visit the national organization for TBI, The Brain Injury Association of America, (BIAA), online for more information regarding your potential situation. (Most states have chapters as well).OR, looking in to it may reassure you that your situation is not the TBI scenario described, but it is something you might want to check off your list. You will have to find someone knowledgeable in TBI's. I found even neurosurgeons only wanted to see my case if they thought I was a surgical candidate - which this is NOT! So how frustrating!However, if you find it IS the case, your doctor can find different meds that will help you cope with the new physiology of your brain, incl the anxiety, and depression is a COMMON side product of the new brain chemistry...and even some meds that help with the "fog," to get your brain awake when it is supposed to be awake. There are also neuro-rehab facilities (see most major hospitals for brain trauma rehab and their outpatient facilities, that may sound extreme, but even mild changes in one's brain can cause a greater problem to the whole body... being that it is the brain you are talking about... it affects the whole dramatically. But they have a whole arsenel of techniques and strategies to help one cope with the newly different brain function... To help even those considered to be the walking wounded. And term the problems you describe, (such as myoclonic ***k for that twitching, or limb spasms). I know for me it was great to be normally broken...once I found the right field of docs, (physiatry doc in my case, or called physical medicine). And once I found him, I was told I was "text book" and "classic." I did wonder at the time, if it was so classic and normal, why had none of the other doctors read the book, (smiles!) This is not to sound dire, but I am sharing to maybe help another avoid some of the maze of diagnosis... And I believe it is something to consider if you aren't feeling like yourself soon or haven't found an answer since your posting. It may be the enlightenment you are so hoping to find...Cause it may not be just "all in your head," as it sounds like you are starting to feel...Because it may well indeed be your head - Surprisingly many docs just aren't up to speed with a lot of the info regarding TBI's. So, keep HOPE alive and stick with it til you find your answer and potential help that is really out there. Take care and I wish you well...
    Anonymous 42789 Replies
    • November 8, 2006
    • 08:41 AM
    • 0
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