Re: ACM with Drop Attacks

Posted By Anneliese Reitz on July 23, 1998 at 23:13:37:

In Reply to: ACM with Drop Attacks posted by Foxy on July 19, 1998 at 18:30:09:






I have a friend with ACM who has drop attacks and they don't sound like my ACM drop attacks.  Mine start with this horrid tightness in the back of the head then loose all bodily functions and drop.  I loose my sight but not my hearing.  These only last a matter of a minute I think, if that.  He described his this way.....
"The exercise-induced ones are a little different.  By body jerks,my limbs
get uncoordinated, and the left side of my face grimaces; then I hit the
ground and have a hard time moving or getting up.  Once I do get into a
seated position, sometimes my speech is slurred and I sort of stare off
into space or rarely blink my eyes.  It's very strange.  I still think
something cuts off the circulation of blood or csf to my brain in those
instances.  It makes total sense to me, but the docs don't agree. "
" I have other attacks where I'm just sitting down and slump over in my chair.  I can't talk at all or move my body.  A couple of times the left corner of my mouth drooped afterwards.  The doctors act like it's no big deal, but it seems like I'm having a stroke or t.i.a.  I'm very frustrated."
Does this sound like a "drop attack" to you or maybe something else?  I surely hope that you have an answer for me.
Thank you very much.
                                  Foxy
Hi Foxy,  I have the same sort of attacks. I also have ACM type 1.  These attacks are very scary. You are right it seems that I to get sudden loss of blood flow to my brain like a TIA.  I drop to the floor or slump over in a chair with loss of muscle control, slurred speech, incoherent and visial loss.  I work in a Surgical Intensive Care Unit and have had two attacks during work.  Each time I have been rushed down to the Emergency Room for treatment.  My neurologist will not admit that the ACM is the cause for this attacks. I think there are alot of doctors who just don't seem to be familar with ACM.  I trying to get refferred to CCF but it is taking me along time with all the Red Tape.  I hope this helps you in some way. Please email me if you need any further information.
Sincerely, Anneliese Reitz