multiple diagnoses

[mcbrad]

I am a 45 year old female.  In early 2005 I began to experience spasming, numbness and drooping of my left eye and left side of my face.  This was originally believed to Bell's Palsy and then was subsequently diagnosed as Hemifacial spasms.  During the course of the diagnosis process I underwent an MRI and a brain aneurysm was discovered.  The aneurysm was in my right carotid (?) artery and was pressing on my optic nerve and displacing my optic chiasm.  The size was approximately 10 mm.  I underwent a microcoiling and stenting of the aneurysm in fall of 2005.  I was advised that the problems with the left side of my face, which continued intermittently, were not related to the aneurysm.   I recovered well, went on with life and put up with the ongoing facial issues which would come and go, sometimes lasting from a few hours to a few days to a few weeks before subsiding.  Some days my face was good, others bad and I could not detect any pattern, trigger etc... In May 2008 I had a generalized seizure (grand mal) that included loss of consciousness, tongue biting etc... I went to ER by ambulance and a quick CT scan revealed no bleed or aneurysm rupture.  A CT angiogram two days later confirmed that the aneurysm was "well coiled" and while there may have been some residual settling (spacing??) it was stable and not related to my seizure.  I subsequently had an EEG that was definitive for Temporal Lobe Epilepsy on both sides.  At this time my neurologist felt that the facial spasms and eye issues were related to the epilepsy as partial seizures and not Hemifacial spasms.  I have been on Dilantin since May (500 mg) and have not experienced any more major seizures.  I have had partial seizures (I believe) and while not unconscious am aware of my surroundings but unable to respond.  The left side of my face issues continued and Keppra was gradually introduced to gain further control of the facial spasms, with a gradual introduction to 2000 mg.  I also experienced right arm tremors and full body jerking, which was attributed to the epilepsy.  I had a second EEG while I was experiencing facial spasms - the EEG confirmed the epilepsy but did not indicate any more spikes with the facial spasms.  Now the neuro says the facial issues are not related to the Epilepsy - they are hemifacial spasms and recommends botox injection (Dec.)  The Keppra has been reduced to 1000 mg and I do feel better, with less balance issues but it is early still.  There is no correlation between my brain aneurysm, the epilepsy and the facial spasms which is just so confusing for me - I understand (or not) the medical explanations but this seems to be an extreme coincidence of bad health centering around the brain.  Does any of this make sense or am I just going crazy?  Do you have any knowledge of similar diagnoses??

[Shelly_Harp0718]

Hi, I was glad to see this post.  I have been getting really discouraged and felt like no one really understood what was going on and I have a hard time talking to doctors (always feel I have to prove to them something is not right).
This past March I had a normal day; worked then went to pick up husband from work.  I wasn't sitting maybe 5 mins in the lot, but all of a sudden I got reallyhot and shaky weak.  I felt like I was going to pass out. Turned the air on high and toward my face and almost made it home.  About a block from my house (15 mins later) my face went CRAZY spasm.
To make longer story shorter, husband called ambulance, er found nothing, my internal dr sent me to neurologist.  nerologist said new symptom to my migraines.
Was w/husband on his neuro appt; his dr said complete seperate issue and he told my nero who said for me to get the soonest avail appt (6wks away).  
I have been having smaller episodes since but 1 wk ago I had another "strong" episode.  my facial spasms got so harsh.  they use to only pull up but are now pulling down as well and involving both sides of the face, they got so bad sunday that my whole body seemed to be spasming.  It looks like a grandmal but I am coherent. so docs say not seizures.  
but after the spells they leave me with headache, nausia, and foggy brain.
and whats more my whole left side, face, neck, shoulder arm are burning.
I still have 3wks before appt but I am getting scared because they are getting worse and I cant get in any sooner.   ER only wants to treat the anxiety this causes me

[Shelly_Harp0718]

Hi, I was glad to see this post.  I have been getting really discouraged and felt like no one really understood what was going on and I have a hard time talking to doctors (always feel I have to prove to them something is not right).
This past March I had a normal day; worked then went to pick up husband from work.  I wasn't sitting maybe 5 mins in the lot, but all of a sudden I got reallyhot and shaky weak.  I felt like I was going to pass out. Turned the air on high and toward my face and almost made it home.  About a block from my house (15 mins later) my face went CRAZY spasm.
To make longer story shorter, husband called ambulance, er found nothing, my internal dr sent me to neurologist.  nerologist said new symptom to my migraines.
Was w/husband on his neuro appt; his dr said complete seperate issue and he told my nero who said for me to get the soonest avail appt (6wks away).  
I have been having smaller episodes since but 1 wk ago I had another "strong" episode.  my facial spasms got so harsh.  they use to only pull up but are now pulling down as well and involving both sides of the face, they got so bad sunday that my whole body seemed to be spasming.  It looks like a grandmal but I am coherent. so docs say not seizures.  
but after the spells they leave me with headache, nausia, and foggy brain.
and whats more my whole left side, face, neck, shoulder arm are burning.
I still have 3wks before appt but I am getting scared because they are getting worse and I cant get in any sooner.   ER only wants to treat the anxiety this causes me

[riverprairie]

I'll chime in too and agree you are not crazy. :)  I'm sorry I can't offer anything specific about your situation but I wanted to let you know we have something in common: I am also 45, and for several years have been dealing with multiple neurological issues. In my mind they are obviously related, but the neurologist can't quite seem to tie it all together. It is really frustrating.

Has your neuro talked to you about myoclonus? That's what I have, and your jerking sounds like it. Is that why you are taking Keppra? Sometimes, although not always, myoclonus is related to epilepsy (called myoclonic epilepsy). Additionally, I will say that I have learned that movement disorders are often on a kind of continuum, and are commonly mixed. So perhaps your hemifacial spasm is related, because that happens to me sometimes too --I have seen it described as a grimace, which is an unpleasant description but perhaps accurate.

I wish I were an expert and could give you (and me) better answers. Mostly I wanted to let you know you are not alone.
best wishes!

[rumpled]

I just wanted to say that I do not think you are crazy.
I started to read your posts as I am experiencing a lot of spasms on one side of my face. I have been on topamax though for years for trigeminal neuralgia oddly for the other side and now this side is going bonkers and while not painful, it drives me nuts! It makes my eye crazy.

I have had two pituitary tumors which are near the optic nerve but smaller and a lot of endocrine issues.

I am not sure what is related or not, but your case is very interesting.