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Frustrated and need answers
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An_250957 posted:
This past February I had a Cerebral Vascular Deficit, diagnosed as a Transient Ischemic Attack as the left side of my body became numb, I had double vision, and lost all balance (my primary physician states it is a RIND). My speech became impaired, as I would either slur words, say them backward, or completely out of context, (I still do). Understanding simple and complex sentences was/is difficult. Four contrast CTs and an hour long MRI came back negative, and the heart echo was perfect. Day 2, I began what I call "tremors" in my brain which still remain. They come in strong, actually feel like someone is shaking my brain, then electricity flows to down the left side of my head to my eye and travel to my left upper jaw, lower jaw, or both, but never make it all the way across the jawbone. Once this passes after a minute or so, I have a headache in the front and at times in the lower back of my head, which last about 5-10 minutes, then goes away, then I am completely exhausted and dizzy and/or disoriented. In the past, I rarely had headaches and only hand one migraine in 1996, when I was pregnant with my second child - I used to joke around that, "I give headaches, not get them." Typically, I have 4-6 episodes per waking hours, and started having them at night; except I am semi-conscious and my entire body is shaking mildly, full of electricity. During the night episodes, I am alerted with a jolt, and they begin. There is loud white noise, which is difficult to explain, although after the episode slows to a stop in about a minute, the white noise ends as well.
Normally, I am in perfect health, normal blood pressure and cholesterol. Six weeks after the CVA I am still imbalanced, have difficulty walking straight (bounce off the walls walking down the hall), have difficulty driving since acceleration brings on an episode and my vision is very distorted (I cannot judge distance of vehicles coming toward me, in opposing lanes, or at cross streets. This is horrible as I love to drive as a hobby and (had) owned two Mustangs. From the start of the episodes, bright lights, the television, computer screen, flashing lights, sunny days, geometrical and particularly squiggly patterns make my brain and vision shake. Last night I was looking at necklaces on Overstock.com, and looked at a squiggly Aztec sun, which distorted my vision and brought a strong pressure to my forehead — when I scrolled and looked at another necklace, it went away. I went back and forth several times and this odd occurrence continued. When I read (MBA college student), my vision starts to grey out (for lack of proper name) and words become fuzzy. I stop and rest, then go back to read until it starts again.
Yesterday I went back to Neurologist for a follow-up and waited an hour and forty-five minutes to see him. Two minutes into our conversation, he answered his cellphone. Afterward, he only afforded me another two minutes of his (my?) time and would not address anything other than asking me if my neck still hurt and, "What would you like?" I questioned him what he was talking about and he said pain medication. I guess he forgot he already put me on Lyrica, and when I said I generally do not take pain medication, only Aleve, he replied that he doesn't like patients to take Aleve, and offered Vicaden or Tamerol. The script for Vicaden is in my purse, but I will never have it filled. Trying to pick the conversation back up (he was trying to get out); I asked him if it is still normal for my short-term memory to be "gone." He laughed and said there was no medication for that. He fell short, as he is not addressing any of the issues from the initial CVA or subsequent episodes. I am currently on leave of absence from work (I drive one hour each way). I'll find a new Neurologist as the hubby & I listened to the conversations of more than 30 patients in the waiting room & feel this office is merely a pill factory…..
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dancer86442 responded:
Definitely seek another Opinion. In fact, take it one step further! Seek an Epileptologist (neuro/seizure Specialist) They have 2 extra yrs of school for Epilepsy Training.

I know you don't want to hear this: Please, Stop Driving! As someone who Loves to drive, this will be hard on you, but, it would/could be worse! I am sure you don't want to Harm yourself or others. I am saying this, becuz, our 'episodes' are known to change w/ no prior notice! A Lot of your triggers (events B4 your 'episodes' sound like seizure triggers. It could be you are photo-sensitive. Note: It is possible to have more than 1 type of seizure, triggers &/or symptoms.

Please keep us posted. Or if you have More questions, please ask. Know we care. HUGS!


Love Candi


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