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Author Topic: head pain but not a headache  (Read 14689 times)

richiea

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head pain but not a headache
« on: December 30, 2010, 11:50:41 am »
I had my surgery on July 20, 2010.  once i got thru all the recovery process, i started to experience pain like the worst headache i could imagine.  the pain would settle in my eyeball, cross the bridge of my nose and into the other eyeball.  then after a while, it would start off with an earache, then into my eyeball, etc.  now it starts off with both ears like an earache then to my eyeballs.  a burning sensation in both my ears prior to the eyeball ache.  i get these about every 3 - 4 hours.  they go away with Excedrine Miagraine, but i end up taking way way too many of them in a day.  i also can't sneeze, can't cough, can't laugh, can't anything that is going to put pressure on my head.  it feels as though my brain is pulling away from my skull.  the drs don't hear me past........headache.  they treat me for miagrains.  i've been thru my neuros, pain clinics,and my next step is to try accupuncture.  does anyone out there have these pains?  what have you done for them?  the drs. keep trying to treat me with antiseizure medicine that don't work.
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cin605

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Re: head pain but not a headache
« Reply #1 on: January 03, 2011, 01:54:47 pm »
Yes....i have had the same pain in the neck and head...its not a headache its pain in the neck and head.....finally saw a good spine Dr.....Got a nerve ablation done and pain is LOTS better then it was.
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2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Mei Mei

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Re: head pain but not a headache
« Reply #2 on: January 03, 2011, 02:20:58 pm »
I have the same thing going on as you do.  I think they are called cluster headaches.   None of the meds worked to stop them or prevent them.   I was on Verapamil for two months, Neurontin for a month and Elavil for a month, then Lyrica for a month and finally Lithium for a month.   15 accupuncture treatments and no help there either.  Go to a neurologist and see what's going on in there by an MRI.   I just had an MRI last Tuesday that showed Occipital Neuroma.  The Titanium is wrapped around the Occipital and C2 nerves.   The Occipital nerve blocks didn't help either.   You need a good neurologist to find out what structurally is wrong.   Please don't waste time on the meds.
Mei Mei
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1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

richiea

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Re: head pain but not a headache
« Reply #3 on: January 09, 2011, 10:45:19 am »
thanks for the replies.  yes,  am tired of the mediciation.  all it seems to do is keep me in a fog.  i've decided that the pain is constantly there, but is covered up by the pain med until it wears off.  Mei Mei, how long ago since your surgery.  and Cin605 how about you, how long ago was your sergery.
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cin605

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Re: head pain but not a headache
« Reply #4 on: January 09, 2011, 12:02:04 pm »
You are still considered early out....My sugery was 2 and1/2 years ago.
I have tried everything under the sun....latest nerve ablation...pain is not the issue now .Today its no balnce ,nausea..ICK!
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2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Mei Mei

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Re: head pain but not a headache
« Reply #5 on: January 09, 2011, 02:45:06 pm »
Hi Richie,
I had my surgery on Jan 12th of 2010.   The meds don't even touch my head and neck.   I was even in the E.R. for broken ribs from helping to transfer my 96 year old father from the bed to the chair.   They gave me morphine i.v. and it numbed up everything but my head and neck.   There is no relief from this pain.

I'm going to see Dr.Ducic on Jan 18th or sooner if I can get a cancellation.   Meds just won't help so don't take them.   They just mess you up mentally and emotionally.
Mei Mei
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1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

richiea

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Re: head pain but not a headache
« Reply #6 on: January 09, 2011, 05:39:31 pm »
my dr. appt is on January 18th also.  we can compare notes.  i'm going to a cranium nerve specialist.
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Mei Mei

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Re: head pain but not a headache
« Reply #7 on: January 09, 2011, 10:43:13 pm »
That's great.   We'll be in touch.   The 18th can't come soon enough.   I never heard of a cranium specialist before.   Where is this?    Do you go to a neurology center or a pain specialist?
Mei Mei
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1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

kzanana

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Re: head pain but not a headache
« Reply #8 on: January 10, 2011, 12:47:01 pm »
Well this head pain is me too, never ending and at times feels like the top of my head is going to blow off and I need to hold it down. My hair hurts and can't comb it for days at a time. tried many , many meds and nothing works to stop the pain. Grenades go off in my head daily. Surgery November 25 2008. Seeing a new Doc my Neurologist recommended for Botox next week.  I have seen several comments about the mesh causing entrapment by the occipital nerve and C2. Going to ask about that.
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Mei Mei

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Re: head pain but not a headache
« Reply #9 on: January 10, 2011, 05:02:50 pm »
Your symptoms sound like mine.   I have trouble combing my hair as it hurts so much.  My MRI last week showed entrapment.   Hang in there and don't go the med route no matter what they say.   It just doesn't work.
Mei Mei
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1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

richiea

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Re: head pain but not a headache
« Reply #10 on: January 11, 2011, 09:52:43 am »
what does entrapment look like on the mri.  i just got an mri done about 3 weeks ago for my 6 mo nth check up.  they said all was fine.  although they weren't looking for it.  what do they comes next after they find entrapment?
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yardtick

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Re: head pain but not a headache
« Reply #11 on: January 11, 2011, 11:59:54 am »
Richiea,

Good question because I suffer from headaches, head pain and facial pain.  The head pain keeps me up most nights and the meds do not help with head pain.

Anne Marie
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Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Mei Mei

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Re: head pain but not a headache
« Reply #12 on: January 11, 2011, 04:21:29 pm »
I don't know what it looks like on the MRI.   I'm going to my neurosurgeon tomorrow to talk to him about it and have him explain it to me.   The radiologist had me come back yesterday because he said the MRI studies were incomplete without having a third MRI of the space connecting the Head and the Neck (cervical MRI).  This was the suboccipital MRI I had yesterday.  If you want to PM me, I can show you the reports.  I don't know if I can post the three MRIs here.  I've never tried that.   Is there a key for an attachment?

Also, check Dr. Ducic at Georgetown by googling him.

Mei Mei   ???
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1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

richiea

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Re: head pain but not a headache
« Reply #13 on: January 14, 2011, 11:41:30 am »
i spoke with a nurse at the Peter J. Jnnwrra Crainial Nervce Disoirder Center in Allgeheny General hospital in Pgh., PA this morning and described my situation and all the pains that i have and for the first time i feel hope.  I have any appointment on tusday 1-18-11.  seems like i'm not a number there but a real person with real pain.  i'll let you know how it goes.  when the pain is so bad that touching your hair hurts there is a real problem.  today is the first day without any of the other "meds" that the drs prescribe and i kinda feel human again.  i hope this might be the answer that alot of us are looking for.
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richiea

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Re: head pain but not a headache
« Reply #14 on: January 14, 2011, 11:43:27 am »
and thats Peter J. Jannetta Crainial Nerve disorder Center in Pittsburgh.  should have used spell check.
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