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Topic: Newbie here! (Read 436 times) |
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Capt_Deb
New Board Newbie
Phinns up, Parrotheads!
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Newbie here!
« on: May 30th, 2006, 2:41pm » |
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Hi everybody!
Capt Deb here. I'll tell you a little about myself. I'm 55 female, formerly very active sailor, windurfer, hiker kayaker. 3 1/2 years ago I was diagnosed with an acoustic neuroma--had brain surgery out in LA. 10 days post -op severe headache doc said I'd had a migraine. Pre-surgery I'd had a few really bad headaches, but nothing like this one. By 6 months post-op I was bedridden with these things usually waking me up in the morning, but sometimes in the middle of the night.
My neurologist persued a CSF problem for over a year and cluster headaches were never mentioned. Secondary diagnosis of chronic migraine disease. I don't think he ever asked about the extreme agitation I went through, or the tearing and nose running. I seemed to drift in and out of these things doing, oh so much better and then relapsing.
In addition to the acute attacks, I get bad exertion headaches. My last visit elicted yet another diagnosis (tenatively) of "hemicrania continua" and researching this I found out more about clusters. My last AM headache I finally used the injectible Immitrex, which actually is the only thing that has ever worked at knocking one of these suckers OUT. Hence my research into clusters. I've been on quite a few "preventatives" including Verapamil, Topamax (which made me psychotic) Inderal--hated the side-effects of all of 'em!
Anyhow 3 years and still no definite diagnosis. Anyone here ever have these triggered by brain surgery? I lost my hearing and balance nerve from the surgery on the same side as my headaches are. I'm on another support forum for Acoustic Neuroma survivors--alot of us suffer from seemingly endless headaches and our neurosurgeons are no help--they just pop 'em outta our heads and send us on our way!
Anyway, that's my story and I'm stickin' to it!
Capt Deb 
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| « Last Edit: May 30th, 2006, 2:42pm by Capt_Deb » |
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3 1/2 years post Acoustic Neuroma Surgery
Chronic Clusters? Still trying to get diagnosed!
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marlinsfan
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I love this place!
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Re: Newbie here!
« Reply #1 on: May 30th, 2006, 3:56pm » |
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Welcome, Captain! Even tho you're a Cap, grab an oar and row with the rest of us, will ya?
I'm sure you've seen this, it has good info on meds. Read all you can, there's lots to learn.
http://www.brightok.net/~mnjday/chtherapy.pdf
PF wishes.
Jose
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Jasmyn
CH.com Alumnus
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Each day will be a new trick in life's journey
 
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Re: Newbie here!
« Reply #2 on: Jun 1st, 2006, 3:19am » |
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Welcome Captain Deb 
On this site there is a wealth of information. I do hope you get a definite diagnoses soon.
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Jazz 
Madness is proclaimed by society’s inability to accept its own infallibility
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unsolved1
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Welcome Capt !
Glad to hear the Imitrex jab worked for you. Stick around a read up, ask questions
Goodluck
UNsolved
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aprilbee
CH.com Alumnus
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Ain't I a stinkah!!
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Re: Newbie here!
« Reply #4 on: Jun 1st, 2006, 5:28pm » |
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Welcome home!
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Guiseppi
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Re: Newbie here!
« Reply #5 on: Jun 1st, 2006, 6:27pm » |
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And my knees just buckled to see another parrot head pop up here! Happy to have you on board. Remember, if the phone doesn't ring, it's me.
Guiseppi
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
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Capt_Deb
New Board Newbie
Phinns up, Parrotheads!
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Re: Newbie here!
« Reply #6 on: Jun 2nd, 2006, 11:39am » |
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Hi Gang!
Guiseppi- you a PH? I've been one since forever, since I usta live in the Virgin Islands! You know a guy named Bill W?
Still on the Indomethacine trial to sort out my diagnosis --one week now. Still waking up with low grade headache and don't know if it's the Indocrap wearing off or not responding. My case scenario is to get the headache when I wake up or late evening. Had my first dose of extended release last night and woke up with a real banger. I almost hope I don't have Indo-responsive headaches cuz it's the worst med I've ever been on! Non-stop tummy ache unless I eat continuously and I've gained 8 lbs in 4 days--mostly water retention. 
Isn't it amazing that I learn more about my health from the internet than from my own docs? They think we won't understand why they put us on the meds they do. Mine never mentioned clusters, even tho he put me on Verapamil and Topomax. If this Indo doesn't work , the next step is headache specialist at UNC Chapel Hill.
Thanks for all you responses to my post!
Capt Deb
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3 1/2 years post Acoustic Neuroma Surgery
Chronic Clusters? Still trying to get diagnosed!
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