Discussions By Condition: I cannot get a diagnosis.

please help - seizure?, cataplexy? ready to throw my brain away

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: Anonymous
  • June 25, 2008
  • 11:40 PM

Have had a doctor (not a neurologist) once suggest that might be what is happening but find no info on the net. I have an aura (can't describe it) lasting about 5 seconds followed by jerking of both arms (bent at elbow, raised) & shoulders (back). Then I lose voluntary muscle control & fall, maintain consciousness, can't see & don't even have voluntary control over my breathing. Paralysis lasts 5 to 20 seconds. Observer once said that I was twitching when unable to move but I was not aware of it.

One time simply came to a stop while walking (immediately following aura), raised both arms bent at elbow & fell fracturing ribs.

Another time had no jerking but neurologically felt 'off'. Head dropped forward, lifted head upwards only to immediately have complete collapse forward onto table (was sitting).

Have these episodes only about once a year. Have minor symptoms resembling partial seizures every week to few weeks.

EEGs & MRIs have been normal - but also never had symptoms during one. Had overnight sleep study done which shows sleep apnea but also showed I took a long time to enter REM so it doesn't seem like Narcolepsy could be a possibility.

Anybody have any ideas?

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  • I am 58 year old male and I was officially diagnosed with narcolepsy/cataplexy last week. At first the doctors thought that I was having seizures. I was at my shrinks and I told him that I might be having seizures. He told me to cut out Aplenzin because it can cause seizures. I suddenly bent backwards at the waist and shook a little bit and fell against the wall. He said to keep taking the Aplenzin because that was cataplexy that he saw.The only thing that finally got me my diagnosis was having a cataplectic attack in the lobby of the Sansun Clinic. I realized that I had not locked my car door and my iPhone was on the seat. I bent backwards and started to shake and then I collapsed. Within seconds there were doctors and nurses who witnessed it. My neurologist finally admitted that I was narcoleptic.I have lost students because I will lecture or demonstrate a drawing technique and space out and then snap out of it and not know what I was doing. That's on a good day. The really embarrassing ones are when I slip to the ground. It scares them even though I warn them. They think it's creepy,You are the first person that has asked the same question that I have or had the same symptoms that I have. The bending backwards is awkward around someone who doesn't know. I was at a faculty meeting and the college is cutting classes and I got agitated, stood up bent backwards and I hit the floor.I have watched cataleptic episodes on YouTube and they aren't anything like mine... except the falling part. Has anyone else bent uncontrollably backwards at the waist? It seems that mine mutates or morphs into some equally odd movement.r
    Anonymous 42,789 Replies
    • February 26, 2011
    • 05:03 AM
    • 0
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