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Help! Have Been Tested For Epilepsy-what Next?

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I live in northern wisconsin, am age 14, and have a condition, in which, doctors from all over the state have not found an answer. Maybe you can help me! For 10 months I have been struggling with this condition. It started with a rash in april, which was on forearms and and thighs. Although unknown, it was treated as lyme's disease, with prednysone, as a precaution. The rash went away after 2 weeks. Immediately afterwards, I took a 2 week trip to montana, near glacier park, where I visited a friend. While there, I discovered a severe loss of balance. I fell down 4 flights of stairs, fell many times while walking, and while just standing. When I returned home, the loss of balance continued. I was falling at all times of the day and realized it was very often. My mother took me to the clinic, expecting an inner ear infection. That wasn't the case. For me my blood pressure drops while my heart rate rises. During one tilt table test within 2 minutes of starting, my heart rate rose to 136 and my blood pressure dropped to 68/32. One time during an orthostatic blood pressure taking, my blood pressure dropped to 49/37.
That does not sound too healthy to me!!!!!!!!!!!
Here are my symptoms:
~falling while walking and standing-can be in the middle of a sentence and just drop to the floor.
~migrane headaches above and behind eyes
~lightheadedness-not dizziness
~joint pain in hips, knees, and ankles
~muscle pain in lower thighs, and calves
~never lost consciousness

i have had a lot of blood taken, a catscan, an mri, ekg's, eeg's, holter monitoring.

I had 2 tilt table tests done. The first one was positive, I was put on florinef. This seemed to help, but after a while the symptoms started to increase. I am off of it now. Currently I am taking verapamil, licorice root, and am drinking salt water. I also am now walking with a cane, because the muscle and joint pain is so bad. Please remember, I am only 14!

I have doing some research of my own and have found a similar condition, called neurally mediated hypotension (nmh). If you know of anything that fits my description, or know more about nmh, please reply!

It has been too long not knowing! I wish to live a normal teen-age life as best as possible, please help me do this!
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replied January 3rd, 2004
Experienced User
Are You Stressed?
Hello there.
Sounds to me like you are having what are called drop attacks its a type of epileptic seizure. While having those the reason that you fall down suddenly is because you do lose consiousness, it is so sudden that you may not even realise. You think to your self oh my I just feel down and then you get up and your ok again like nothing had happened. Except for feeling embarressed about it all.
I am 21 yrs old I was diagnosed with a sudden onset of epilepsy 3 months ago now. No family history nothing. All my tests came back normal as can be. Eeg reading was normal they said apart from sever stress. I have found since being on meds I get a warning now when an episode is comming. But before I would fall over usually backwards into a grandmal seizure. But I have all different types. My meds are making me have petit mal seizures more often now and through the day I feel weird like you said. I sugesst that you go see another neurologist because the one I saw first told me there was no way on this earth I had epilepsy and he told me to see a shrink. I hope that you find out more info. Just because you are aware of what is happening but you cant do anything doesnt mean that your not having a seizure.
Good luck
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replied January 4th, 2004
Thank you! See, I have seen about 4 or 5 neurologists from all around the state. They each have said that they weren't drop seizures. I'm wondering if maybe it wasn't that nmh. They is a lot of similarities. At first I thought maybe it was multiple sclerosis. They ruled that out with an mri. Is there any other things that you know of that fits the description?
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