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Author Topic: headaches and brain movement  (Read 18446 times)

mema

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headaches and brain movement
« on: May 04, 2007, 07:57:59 am »
Prior to FSR 25 treatments in Nov-Dec 2005 I didn't get headaches.  On day one of radiation I began mild to medium headaches  & are chronic.  Also on day one of radiation I began to get a feeling of movement in my head like a wave or a worm going through my head./ This movement happens on the onset of my falling to sleep.  I get chills in my body and head right before this movement feeling, but not always.  The Drs. think it is positional or neck related.  I have neck problems for 20 yrs and never had headaches or movement in my head.   I also can lie in bed for 2 hrs and watch a movie, but as soon as I begin to fall asleep is when the movement starts.  I had an eeg which was negative.  I am on clonazepam which helps.  My six month MRI looks good, so say the Drs.  I' due this month to get my next MRI which from what I'm reading seems  like a long time in between MRI's.  My AN was small so I don't know if that makes a difference.  Has anyone else had a feeling of movement?  This movement doesn't hurt it just feels weird.


                                                                                                                           mema
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6mm x 8mm left AN FSR 26 treatments Nov.-Dec.2005
MD Anderson Orlando, Fl.

Omaschwannoma

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Re: headaches and brain movement
« Reply #1 on: May 04, 2007, 05:43:52 pm »
Hi Mema,

After reading your post it reminded me of what happened, one time, to me during my first year post surgery for AN.  As I lay on my back and just before falling off to sleep I suddenly had the feeling I was being pulled backwards.  The feeling was so strong, much like centrifugal force.  Very disconcerting!  I never have had that again, but I do have the centifugal force feelings while I am awake and moving around.  These cause me to side step, sway, or stumble due to the removal of my balance nerve and also SSD along with nystagmus of the eyes.  Mind you this does not stop me from carrying on with day-to-day activities, although I do not have the stamina I used to have as my balance issues tire me out around late afternoon.  I hope you find some answers here, if not and they continue a call to your doctor or another might be warranted if not just to ease your mind. 
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1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

Windsong

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Re: headaches and brain movement
« Reply #2 on: May 04, 2007, 07:26:49 pm »
I don't know about a wave feeling exactly but the last few months now, when i fall asleep, i get this weird new sensation of drifting backwards and sinking or pulling or something..... truly strange... and a bit unnerving, so i tend to yank myself back... it happens in a slow mo sort of way....

W.
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mema

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Re: headaches and brain movement
« Reply #3 on: May 06, 2007, 08:00:55 am »

Arushi, What is SSD.  Did your Drs ever give explanation of that backward feeling.  Wondering if you slept on stomach or back.  I sleep on stomach when movement happens.


                                                                mema,
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6mm x 8mm left AN FSR 26 treatments Nov.-Dec.2005
MD Anderson Orlando, Fl.

mema

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Re: headaches and brain movement
« Reply #4 on: May 06, 2007, 08:10:46 am »

Windsong,  I felt releived that I wasn't the only one having something going on in my head.  Did you have surgery or radiation, and when?  Sounds to me like it didn't happen immediately.  What have Drs. say.  I often wonder why It happens at onset of sleep.  My first MRI looked good to the Drs.  I'm due for my next MRI this month and see MD Anderson in June.  I remember a nurse telling me during treatment that probably a nerve got zapped.  That always sounded possible to me.  But Drs. never said that. Will keep you posted after my MRI results.


                                        mema
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6mm x 8mm left AN FSR 26 treatments Nov.-Dec.2005
MD Anderson Orlando, Fl.

Windsong

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Re: headaches and brain movement
« Reply #5 on: May 06, 2007, 09:12:24 am »
I had fsr , 25 days, and let's see... i noticed this about the one year mark post treatment. It happens most notcieablywhen i am lying on my back. I tend to sleep on my side though. Interesting, I get chills too and it's really weird.... I haven't mentioned this to my rad. doc. I did mention the chills to my gp. I have so many things wrong with me , I'm getting burned out from keeping track of the symptoms, figuring out which ones should be mentioned to which doc..... ( i actually gave a list of my diagnsoes to my gp the other day and asked if he could tell me which ones i can cross off lol... we're supposed to be going over them this next week rofl)...plus i forget things lol. Having An treatment and some of the after effects immediatley after or during has turned out to be a bit like having a baby...( the actual delivery tends to be forgotten in the bliss of the new baby lol) and unless i go read in my journal i can easily forget what symptoms i had an do have... i did get some more noticeable headaches about 3 months after treatment ended and i've had some more recently again....they don't last long though.....

W.

ps. came back to add i have a headache right now sigh...
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Omaschwannoma

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Re: headaches and brain movement
« Reply #6 on: May 07, 2007, 06:59:46 am »
Hi,

SSD is short for "singal sided deafness".  For the record, I sleep in all sides and felt this motion when I was on my back.  No, I did not mention this to my doctor as I felt he would see me as a complainer.  I went through six years of doctors saying this about me until the AN diagnosis that I am cautious about calling at the first sign of something new to post surgery symptoms.  I decided to do a wait and see approach.  As I said before that was the only one I had.  Hope you can get an answer for this other than "we don't know" or "it's not AN related" as these answers leave you frustrated. 
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1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

mema

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Re: headaches and brain movement
« Reply #7 on: May 08, 2007, 04:07:20 am »
Judzie,

   I'm a newbie with my computer also.  Tried to respond to your pm but it came back to me. I'll call ANA and see if they can help me.

                                                                                                 
                                                                                                      mema
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6mm x 8mm left AN FSR 26 treatments Nov.-Dec.2005
MD Anderson Orlando, Fl.

Soundy

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Re: headaches and brain movement
« Reply #8 on: July 23, 2007, 02:30:59 pm »
as I am drifting off to sleep I get the sensation my head is rocking back and forth... it
startles me awake... I had my husband watch me so he could see if it was really moving ..
took a couple tries cause he drifted off watching me ... but he told me he saw no movement...
it is unnerving because it feels so real....
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3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

lora

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Re: headaches and brain movement
« Reply #9 on: July 26, 2007, 01:07:28 pm »
I don't have a movement feeling, I have a "sound"--  kind of a "squishy" sound.  I call it a "slug" moving in my head, as if something wet just went for a slide--Not painful or anything, just strange.
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4.7cm x all over my head, filling 4th ventricle, squashing the brainstem
translab by the awesome Dr.Tomaras 4/12/07
retrosigmoid, Drs. Tomaras and Steuer 6/4/07
GK in Oct. for the little bit left?
2007--the year of the head "what a long, strange trip it's been"

mema

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Re: headaches and brain movement
« Reply #10 on: July 28, 2007, 08:40:01 am »
Soundy,                                                                                                                                                                                   


Wow, your the first person who has a very close sensation to what I get on the verge of sleep.  I changed to the neuro-oncologist where I had my radiation done in March.  He felt it was positional and neck related.  So he ordered an MRI of my neck as well as my brain. I went back to him in June for the results.  He brought up my neck problems, but I told him I have had neck problems for 15 plus years and this was different and also started day one of radiuation.  I asked him could there be a nerve in my brain causing this.  He explained how nerve damage when the nerve looses its sheathing and can cause spasms.  He said this possibly could be whats happening.  It made sense to me after 18 months of doctors just shrugging their shoulders .  And I did realize it was positional in the sense that it happened at the onset of sleep when my head was turned  on my right side.  Recently I went on mobic for a different ailment.  It actually helped my headaches and the brain movement at night or nap time.  But I keep having reactions of the mobic and go off it.  My headaches and movement return.  I see my primary the end of August and see what he thinks.  Oh, also the neuro-oncologist did agree it was nerve related because of the mobic  helping.  Did you have radiation?  Does any of this sound familar to you?                                                   



                                                            mema
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6mm x 8mm left AN FSR 26 treatments Nov.-Dec.2005
MD Anderson Orlando, Fl.

mema

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Re: headaches and brain movement
« Reply #11 on: July 28, 2007, 08:45:02 am »
Lora,                                                                                                                                                                                       


I first described my brain movement like a fishbowl effect.  It started at the base of my neck and moved up to the middle of my head, like a wave feeling.    I just posted soundy with more details of what I have recently found out.  The post should be right above this one.                                 

                                                                       

                                                                mema
                                                                                         
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6mm x 8mm left AN FSR 26 treatments Nov.-Dec.2005
MD Anderson Orlando, Fl.

Soundy

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Re: headaches and brain movement
« Reply #12 on: July 29, 2007, 02:39:25 pm »
I had trans lab surgery on July 2nd ...

I have found that if I sleep propped I don't get as much of the rocking feeling...
I also get a head ache and more rocking if I am too flat or my head is turned a bit to
the right , which is my surgery side...

I was not sleeping thru the night and the neuro gave me something to help that ... I
take it and wait for it to start making me drowsy then lay down... if the rocking feeling
starts the medicine is well on it's way to working and I can go on to sleep
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3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

mema

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Re: headaches and brain movement
« Reply #13 on: September 15, 2007, 08:45:08 am »
Soundy,                                                                                                                                                                                   



What is the med you take.  All of a sudden my clonazepam and tylenol pm doesn't seem to work.                                                         





                                                          mema
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6mm x 8mm left AN FSR 26 treatments Nov.-Dec.2005
MD Anderson Orlando, Fl.

Soundy

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Re: headaches and brain movement
« Reply #14 on: September 16, 2007, 08:30:40 pm »
a low dose of nortriptyline ... I am not taking it now unless an hour befor bed time I
am not feeling tired... it relaxes me and I can drift off...
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3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery
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