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A strange thing happened to me today, and I wondered if anyone could advise me on it.  I was playing a hymn on the piano as my church's children's choir was singing.  When I was finished with the piece, there was a very odd look on the faces of my kids.  They asked me "What happened?"  I told them that I didn't know what they were talking about.  They said, "Well, you started playing a bunch of wrong notes all of a sudden, and then you skipped several words and we didn't even know where you were anymore."  The piece was simple and I am a very good piano player - as far as I know in my mind, I played the piece flawlessly!!  But I believe the kids because of the bewildered look they had no their faces and because they said the same thing at nearly the same time.  I have strange sensations over the last several days as if I have gone to sleep or checked out for a second or two - sometimes will also have intense dizzy spells that come on very suddenly and last a fraction of a second - not long enough for me to fall down, but just to make things spin very briefly (but intense) and they stop just as fast as they start - like a switch being turned on and off quickly.  I was thinking that these sensations were lack of sleep (although there is no evidence for that - getting plenty of sleep) or just in my imagination, but the incident with the kids makes me rethink this.

I have been having miscellaneous neurological symptoms since March 2006 for which I have had many tests, all negative.  My first symptom was periodic oscillating vision that would oscillate maybe 50% of the time for several days at a time and then be fine for a couple of weeks at time.  My neurologist assumed a pituitary gland tumor and did a MRI focused on that area.  He has also performed a series of tests - I don't remember what they were called - something with "potential" in the name.  All negative.  He sent me to a eye doctor neurologist (orthoneurologist?) for a second opinion.  He only looked at the tests that the first doctor had already done and said he had nothing more to offer and had no diagnosis.  I had an incident in January 2007 in which my right leg did not want to cooperate in movement.  I went to the emergency room and was admitted, but they repeated many of the same tests and again found nothing.  I regained the full use of my leg within 24-48 hours.  Today, I again experienced the same right leg problem, but didn't bother to see anyone about it due to the results from the last time.

I am completely new to this forum, but would appreciate any insights anyone has.  I am 44 years old and am in otherwise good health with no weight problem, no heart problems, don't smoke or drink, bp 120/80, slightly elevated LDL (230) (under treatment) but ratio is good (HDL is 70-80).  A dopplar on my neck was within normal ranges.  I am hypothroid and taking .1mg synthroid daily.  Prolapse mitral valve.

Thanks
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Avatar universal
I just wanted to update you on this and ask a question or two.  I had an EEG done on 12/12.  Then my doctor went on vacation and has been gone ever since - so I didn't even get the results of the EEG until today.  But, when I DID talk with the doctor before getting the EEG, I got him to  refer me to another neurologist at a major hospital in St. Louis.  He's supposed to be one of the best in the US.  I was lucky enough to get an early appointment with him and I see him tomorrow!  So today, I got copies of my EEG report and even the actual data on CD, as well as all past records on this, to bring to the Dr. tomorrow.

My question: the EEG report reads (in part) "Rhythmic mid temporal theta activity was seen at times over the right temporal area.  At times some question of focal slowing was seen over the left temporal area."  This is in the "Photic Stimulation" section.  At the end, he states that "this is a normal eeg obtained during awake and sleepy states."  The doctor who read it was same neurologist that had seen in the first place who is hell-bound to say that there is nothing wrong with me and it is all in my imagination.

Could these two variants have any clinical significance?  I read in a study that a 9 year old boy was found to have a lesion in the right temporal area who also had the rhythmic mid temporal theta activitiy.  Anyway, I have now been getting daily headaches in the frontal area of my head, usually after being awake for about 6 hours.
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Avatar universal
Doug,
No, don't push to find the underlying cause yet, as it will take too much time.
You need medication to stop the seizures.

Yes, you might have an underlying cause to the sudden onset of seizures.
That cause MIGHT be tick borne infection, but that will take evaluation by a physician who is very experienced.

People with Lyme Disease often have chronic sinus problems.
Serrapeptase is an over the counter supplement that can help.

Carol
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Avatar universal
I appreciate your concern about the driving.  I have a 70 minute drive to and fro work each day and just isn't anyone to help, and I have to work.  Also, I am a music teacher and my Christmas program is coming up soon, so missing work is not a great option.  This is a very frustrating situation because I am also worried about myself and my safety in terms of driving.  I think I just need to be careful for now.  This morning's drive was uneventful.  I called the my family doctor today and explained the situation to the office staff who did not seem to take the situation with the same degree of alarm that I feel about it.  They were unable to get me an appointment until Thursday.  They said that I could go to ER if I wanted to, but I am afraid they will admit me and I can't take the time out right now.  The doctor may just give me some medication (Depakote for atypical absence seizures?), but isn't it kind of unusual to suddenly start getting seizures as an adult without some underlying cause?  Should I push them to search for an underlying cause rather than just medicate the symptom?

Bert: Interesting possibility.  I DO have a lot of sinus problems.  I'll keep that in mind.  I think my first step though is to get an EEG, then perhaps a Lumbar Puncture.  We'll see what dr. says.

Doug
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Avatar universal
Dear Doug,

An EEG would be good if you had a seizure, however for being dizzy doesn't indicate that a seizure is coming on. I've had similar symptoms, dizziness, headaches, vomiting, lost words, lost sense and speech, arms and legs that wouldn't cooporate at any given time. I thought I was having stroke after stroke. I had seen so many doctors, and had every test under the sun. Eleven years and they couldn't find anything wrong with me, Psycosymatic is what one Dr. said. In 2001 I had a real bad cold, sinus infection and fever. It was nothing new, I had them frequently. I lived in this tiny town and my main physician was in a larger city. due to snow the freeway was closed. I went to the local clinic instead and was seen by an old school doctor who had me lean my head back as he looked up my nose. He asked me how often I had colds and if I had any other illnesses. I told him of all my symptoms I continiously had. He said  I had a collapsed nasal passage. He said this more likely was applying pressure to a nerve in the sinus. This is the nerve that passes through the sinus, down the neck, through the shoulder, to the hip and down the leg.. He recommended me to a ear, nose and throat Dr. for surgery. Come to find out, both nasal passages were collapsed and my nasal cavity had several cysts which were removed.   I'm cured, six years and I've never felt better. It may be a long shot but your symptoms are familiar, I hope you get better.
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Avatar universal
Ye gads Doug, call a friend, call a cab, or just don't go anywhere.
I don't want to read about you in the paper.   :-(

I did not mention that seizures can be caused by Lyme infecting the brain.
Lyme can also cause depression, anxiety, panic attacks, memory problems, sensitivity to light and sound, ringing in the ears, dizziness, vertigo, vision problems, insomnia, and many other mental health issues.

The reason I did not mention that Lyme might be the cause of your problems is because I thought it much more important that you get the seizures diagnosed and treated.  You are a danger to yourself and everyone else on the road if you drive knowing that you have seizure activity.

Don't worry yet about getting a test for Lyme.
The tests are so lousy and unreliable (for many reasons) that the diagnosis must be made based on the patient's symptoms, which is known as a clinical diagnosis.
Not many doctors seem willing to make a clinical diagnosis of Lyme.  They just order the ELISA test, and when it comes back negative, tell the patient that he doesn't have  Lyme.

Carol
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Avatar universal
Thanks so much everyone for your very helpful replies.  Your comments regarding driving hit me hard as I was just thinking about that today.  Just a day or two ago, I had a near miss backing out of my driveway, not seeing a car that was STOPPED on the road just at my driveway (seeing that I didn't see him) and I nearly turned into him.  Then today (day after original post), I stopped at an intersection and believing that there was no cross traffic I started across, noticing just in time that there was a car there at the intersection (right in front of me!) making a left turn from the highway turning onto my road - I nearly hit him.  This is very unusual behavior for my driving - I've never had an accident that was my fault and I drive 3000 miles a month.  I'm single and have no one to drive for me, so I don't think I have a choice but to drive for now, but will get to my family doctor Monday and see if he can recommend an entirely new neurologist.

Yes, it was a evoked potential that I had.  No, I have not had a lumbar puncture - to rule out MS right?  My symptoms started with vision problems and I am told that MS doesn't start with that.  But otherwise, yes, I have researched it and it seems my symptoms (other symptoms too many to mention in my original post) that might match MS.  Also, have not had test for Lyme Disease, but isn't that related to outdoor activity and tic bites?  I don't remember the last tic I encountered.  I get counseling as well for depression (although that is nearly cured now) and my counselor (not an MD, but is an RN and pschologist) thought that previous episodes I had described were seizures.  She said an EEG while the seizure was occuring would basically be about the only way of a true diagnosis though (pretty hard to time that).

Thanks so much, all.  God Bless.
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Avatar universal
You sound like me as far as the leg issues, eye issues and some other things.  I have no real answers either.  I think the test you were talking about is evoked potentials.  The recent issue sounds a bit like a TIA (trans ischemic attack) to me.  The other things don't.  I think an EEG would be in order like Carol suggested to see if you are having some kind of focal seizures.  I would also consider another opinion from another neuro.  Have you been tested for lyme?  It can cause these symptoms as well?
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Avatar universal
Doug,
You are describing a seizure.
You should see your doctor, who can determine if this is an absence seizure, a partial seizure, or other.
Please, please do not drive until your doctor has you on medication to control it.
You might lose control of the car and injure yourself or others.

Wishing you the best,
Carol
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Avatar universal
Hi Doug:

I'm one of those people who have really strange things happen to them as well and the doc's never seen to figure out what's going on.  But you know your body and the fact the kids saw you change is evidence of it.  I don't want to be an alarmist but what if it happened if you were driving a car.  That was a monkey wrench that was given to me so I share it with you.  There is obviously something amiss.  Get with your pastor/minister pray with them and get to those docs or new one if possible and don't stop until they find out what's wrong.  You mentioned some tests, have they done a Lumbar Puncture?  I only ask because that is where they found something they were looking for, for me.

I am new here also and just posted my first question.  I hope I helped a little bit.  The bottom line is you know your body better than any doctor and you know that what is happening is not normal.  I am not trying to tell you the test I suggest is the answer or it may have been done already.  Keep plugging away and keep in touch.

Good Luck and God Bless and I will keep you in my Prayers.
Deborah KY
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Avatar universal
Hi Doug:

I'm one of those people who have really strange things happen to them as well and the doc's never seen to figure out what's going on.  But you know your body and the fact the kids saw you change is evidence of it.  I don't want to be an alarmist but what if it happened if you were driving a car.  That was a monkey wrench that was given to me so I share it with you.  There is obviously something amiss.  Get with your pastor/minister pray with them and get to those docs or new one if possible and don't stop until they find out what's wrong.  You mentioned some tests, have they done a Lumbar Puncture?  I only ask because that is where they found something they were looking for, for me.

I am new here also and just posted my first question.  I hope I helped a little bit.  The bottom line is you know your body better than any doctor and you know that what is happening is not normal.  I am not trying to tell you the test I suggest is the answer or it may have been done already.  Keep plugging away and keep in touch.

Good Luck and God Bless and I will keep you in my Prayers.
Deborah KY
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