Author Topic: Hemicrania Continua  (Read 58975 times)

Mary 117

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Re: Hemicrania Continua
« Reply #30 on: May 30, 2006, 09:25:49 am »
Wow Deb. I'm sitting here trying not to cry from relief. (It sucks to cry at work) I was going to post a question this morning because I have been having awful sypmtoms the last 2 weeks and after reading this I may have found some help. I have never had headaches and really had no headache problems after surgery-back to work after 4 weeks, etc. Now for the last 2 weeks, I have had awful pain in my head, behind my ear, it feels like the bones in the right side of my face weigh 100 lbs and every thing is stiff and sore. The neurosurgeon won't help, the walk in clinic is scared to death to do anything and I am so tired of just surviving through the day. One Dr. did give me Hydrocodone but thats just putting me to sleep.
 Thanks for giving me hope again. Maybe I dont' have to just survive. One last symptom to ask, when i push on my cheek bone or around my eye(surgery side) it  hurts, also if I grab a hold of my cheek (thumb in mouth) and pull my cheek away from my teeth, it hurts like crazy. Any one else?
Thanks this site makes my day!

Mary
1.9cm House Ear Clinic
06/24/05
2cm x 1.5cm AN, Middle Fossa, Dr. Brackmann  05/24/05
Mild hearing loss, mild facial weakness, no balance issues

"well behaved women seldom make history"

Captain Deb

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Re: Hemicrania Continua
« Reply #31 on: May 30, 2006, 09:30:35 am »
Another AM headache/neck pain/tearing!  Called my doc today about changing the Indomethicine dosage like Janet suggested. Also called my disability atty about recent diagnosis--haven't been able to work for a week. Still very difficult for self-employed people to get disability. Still having tummy problems from the Indo--if I can't tolerate it-I'm up the creek without a paddle and you know which creek!

Maxxrg-glad to hear you are pursuing the TAC possibility--treatment is very different from migraines.
Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Captain Deb

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Re: Hemicrania Continua
« Reply #32 on: May 30, 2006, 09:47:05 am »
Mary- those symptoms sound very much like ones I've read about in the TAC article by Matharu and Goadsby in the JNNP.

http://jnnp.bmjjournals.com/cgi/reprint/72/suppl_2/ii19? maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&author1=Matharu&andorexactfulltext=and&searchid=1&FIRSTINDEX=0&sortspec=relevance&resourcetype=HWCIT

click on this link and download and print this extensive atricle on TACs. As you read it open a link to some kind of medican dictionary, cuz it's hard to decipher all the jargon!
My neurosurgeon was not much help either-no wonder because headaches aren't his specialty. They just get rid of the tumors.  Suggest you see a headache specialist at a major medical center--that's my next step after battling these buggers for 3 years. I had an appt at Duke, but they actually CANCELLED it on me, but I had an appt with an AN specialist, not a headache specialist--you would think they would have referred me to a headache Dr dontcha? Needless to say I'm pretty pissed at my neurologist for letting me go this long without referring me to a headache specialst at a major medical center!!

Capt Deb
« Last Edit: May 30, 2006, 09:52:34 am by Captain Deb »
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Mary 117

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Re: Hemicrania Continua
« Reply #33 on: May 30, 2006, 10:09:02 am »
Thank you(x10). Sometimes I feel all alone and a little crazy. I'm calling my G.P. this morning and tell her what you have told me. Maybe I can get some relief. Ok, the comment about oil paints worries me. I have been painting with watercolors and was going to branch back to oils, I had done some years ago but switched to water because painting time became limited with kids and the rest of life. What are you going to do.  Should i wait?
Thanks Deb!!!!!!!!
Mary
1.9cm House Ear Clinic
May 24, 2006

2cm x 1.5cm AN, Middle Fossa, Dr. Brackmann  05/24/05
Mild hearing loss, mild facial weakness, no balance issues

"well behaved women seldom make history"

Captain Deb

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Re: Hemicrania Continua
« Reply #34 on: May 30, 2006, 01:59:54 pm »
Creativity is important! If you use oils, thin them with Gamblin products--Gamsol for thinner and Galkyd or Galkyd lite for mediums.  Also Turpenoid Natural for brush cleaning.  All are totally odor-less, you'd never know there was a painting studio in this house!
Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Rayinpa37

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Re: Hemicrania Continua
« Reply #35 on: May 30, 2006, 02:50:42 pm »
neuro was off today.. left info with his nurse.. will hear tomorrow.. am hoping he agrees and is willing to try.. he is really very open and caring.. so i should be ok.
-------------------------------------------------------------------------
Ray Grace - age 40
Dunmore, Pa

1.9cm AN removed via Sub-Occipital Surgery
March 8th 2004
Dr. Robert Martuza, Massachusetts General Hospital
--Using CROS Hearing Aids

Captain Deb

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Re: Hemicrania Continua
« Reply #36 on: May 30, 2006, 03:58:26 pm »
Came across a forum for cluster headaches, too http://www.clusterheadaches.com Very interesting info.
Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Larry

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Re: Hemicrania Continua
« Reply #37 on: May 31, 2006, 04:55:23 pm »
Thx Capt Deb, I'll look into it.

One gets rather desparate at times and willing to explore / try anything.


Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

staypoz

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Re: Hemicrania Continua
« Reply #38 on: May 31, 2006, 07:26:42 pm »
I have gotten the most relief from the head and neck pain (I don't like to call it a headache because that doesn't begin to describe what it feels like!) from a nerve block and non-steroidal trigger point injections.  I have had a series of twice weekly injections for the past two months, sometimes as many as 15 shots at a time, and they have really helped with the neck spasms and the referred pain in the forehead.  What neither of these treatments has given me much relief from, however, are what I call the "brainwrecks", those excruciating, debilitating throbbing and shooting pains that seem to emanate from the incision site.  My urologist, of all people, asked me recently if I had considered hypnosis.  He gave me a referral to a psychiatrist to whom he refers patients with intractable bladder pain.  I got an appointment with this doctor, was tested for my hypnotizability, and am scheduled for what is called a "full induction" in a couple of weeks.  This doctor has had patients who can't be anesthetized, undergo major surgery while hypnotized.  If I understood him correctly, the pain will still be there but my perception of the pain will be altered.  I've done botox, accupuncture, physical therapy, reiki, massage and all have done some good.  I'm hoping this will give me another, non-drug tool to help me manage the pain.


Rayinpa37

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Re: Hemicrania Continua
« Reply #39 on: May 31, 2006, 09:09:45 pm »
well spoke to neuro today..based on what i sent him and said about hemicrania continua.. he would not prescribe the indicated drug.. said was too strong.. and said try motrin first and see what happens..

OMG here we go again.. isnt this considdered valid excuse to string up your dr... argggg well tonite is nite 1.. will try motrin so i can say HAH   didnt work...
-------------------------------------------------------------------------
Ray Grace - age 40
Dunmore, Pa

1.9cm AN removed via Sub-Occipital Surgery
March 8th 2004
Dr. Robert Martuza, Massachusetts General Hospital
--Using CROS Hearing Aids

Captain Deb

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Re: Hemicrania Continua
« Reply #40 on: June 01, 2006, 05:16:39 am »
Maxxrg
Maybe it's time to get a new neurologist! Based upon my research, an Indomethacine trial is standard procedure to rule out both episodic and chronic paroxysmal headache and hemicrania continua. Is you NRO (my abbreviation for neurologist which is too hard to type) at a major medical center and does she/he specialise in headaches?

There is an OTC that is used for cluster headaches as well--the brainwrecks accompied by tearing, runny nose and agitation--it's called melatonin--my bad brainwrecks (great word) seemed to abate a little when I started taking 9 mg at bedtime.
Capt Deb 8)
« Last Edit: June 01, 2006, 05:19:06 am by Captain Deb »
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Rayinpa37

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Re: Hemicrania Continua
« Reply #41 on: June 01, 2006, 10:49:41 am »
i will check into it.. no he is not at major hospital.. although he is on verge of retirement..

but i am going to email my NRO who did the surgery @ Mass General (Harvard Medical)  and see his opinion and if he will prescribe
-------------------------------------------------------------------------
Ray Grace - age 40
Dunmore, Pa

1.9cm AN removed via Sub-Occipital Surgery
March 8th 2004
Dr. Robert Martuza, Massachusetts General Hospital
--Using CROS Hearing Aids

Captain Deb

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Re: Hemicrania Continua
« Reply #42 on: June 01, 2006, 11:10:29 am »
Do they have a headache clinic there? See if the neurosurgeon can refer you. NS's are great at poppin' 'em out, but the headache specialists are who we should be seeing now.

I know how you are living--headache to headache--can't plan anything-scared to go anywhere--it SUCKS!!! I seem to have gotten a little better than I was 2 years ago, but the little ones are annoying and the big ones--well I feel like I'm gonna DIE and then I'm afraid I WON'T!
Capt Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Captain Deb

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Re: Hemicrania Continua
« Reply #43 on: June 01, 2006, 12:39:02 pm »
Great, just GREAT!
Now I got tummyachia continua to go with the hemicrania continua.  Almost rather have the headache than this continuous nasuea/bellyache. Yucky-poo-poo! Welll....not really.
Haven't had a headache since I started the Indomethacine. Gotta apt with the gastoenterwatzis Monday--$50 to tell me I have an irritated stomach and take aciphex--which I'm already doing! Well--DUH! Won't represcribe me what he prescribed me last year with the Verapamil.

With all of the $ I've spent on this stupid head I coulda had:
My teeth veneered (sailing accident 30 years ago!)
A personal trainer for a year
A new kayak
A Caribbean vacation for a month on a sailboat with Dr. Love
A buncha money in my IRA

AAAAAAARRRRRRRRRRRRRRRRRRRRRRRRRRRRRRGGGGGGGGGGGGGHHHHHHHHHH!
(Argh is the frustration growl--AAAAARRR is the Wench Call!)

Capt Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Larry

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Re: Hemicrania Continua
« Reply #44 on: June 01, 2006, 04:59:06 pm »
CALLING DR FRANKENSTEIN

Oh Captain Deb,

My sympathy goes to you.


Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz