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Topic: initial appt with neuro?? (Read 314 times) |
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Renee
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initial appt with neuro??
« on: Nov 29th, 2003, 11:07pm » |
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dear lifesavers during my time of pain,
i have my first appt. with a neuro this coming wednesday. it is with the houston headache clinic's dallas office...figure that out?
anyway...i was finally diagnosed with CH after 7 years of lots of continual ha and neckaches. The e.r. doc gave me a shot of pred with pain meds and the ha went away, for 2 whole days..yippee. I have all the symptoms now that I've researched CH...droopy eye, stuffy nostril, pain over eye and side of head...all occuring only of left side...ALWAYS!
I'm not sleeping thru the night and when I am asleep i'm having nightmares of what the initial appt might be like....you know, brain tumor, etc. etc.
what i'm asking is....what is the consensus out there for what tests are done and/or how the initial neuro appt goes, etc etc...typical first meds....etc.
please help soothe my anxiety because dealing with the ha is enough without the nightmares and unknown coming up on wednesday.
i hope your thanksgiving brought lots of full tummies, heavy eyes and pain free days.
renee (aka txcowgirl) 
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
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Callico
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Re: initial appt with neuro??
« Reply #1 on: Nov 30th, 2003, 12:12am » |
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Hi Renee,
First thing I would do is go to the meicical info button on the left of this screen and click on it. Follow it down and click on all of the topics that you think are pertinant and read, read, read. Once you have read and at least somewhat understood what you are reading you can go into the appointment knowing that you know as much as most Drs. that you will ever see. I am NOT denigrating Drs. as a whole in saying that, but it is unfortunately true. However, in seeing a Neuro from a headache clinic you should have someone who is at least somewhat knowlegeable about CH, but you will be able to discuss your case from a position of knowlege and understanding, and not feel like you are merely a guinea pig.
As far as the tests, I would expect to undergo an MRI and an MRA. Both of them are painless, just boring.
The meds prescribed will probably include the usual mix of preventatives and abortives, but much of that will be trial and error, because no two clusterheads that I know of react the same way to the meds. One thing I would insist upon is a prescription for O2. It works for many of us, and has no side effects.
Wish you the best!
Jerry
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BlueMeanie
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Re: initial appt with neuro??
« Reply #2 on: Nov 30th, 2003, 12:16am » |
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Renee,
I wouldn't worry a thing about going to the neuro. My 1st CAT scan was a closed one (makes you kinda clostraphobic). I had another a few years ago that was an open CAT scan. Modern technology. As far as anything else, I would guess you will just be put on different meds. It takes a lot of time & visits to come up with something that works. You may want to ask for O2 to start with for quick relief at night. Anything else should just be questioneers, blood tests and such just to make sure your CH are not something else.
Welcome to Headache Hell. Sending vibes for PFDAN.
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ClusterChuck
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Re: initial appt with neuro??
« Reply #3 on: Nov 30th, 2003, 12:45am » |
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Simple, just remember: MRI; MRA; CAT scan: and O2 (oxygen).
After that, talk about verapamil (preventative) and imitrex (abortive). Verapamil, Imitrex, and O2 are the most popular drugs.
Good luck, and keep us informed!
Chuck
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Roxy
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Re: initial appt with neuro??
« Reply #4 on: Nov 30th, 2003, 12:54am » |
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Renee, don't worry about the appt. I've been there and done that. They will do all kinds of tests on you...they'll even do a sonagram of your head....with all that nice gel in your hair. They did an eye test on me....my cluster side eye droops a little bit...etc. It's really not bad at all, and they do it all in-house, so you don't have to go to another lab or anywhere.
He gave me 02, imitrex and verapamil to start off with. They will do right by you, so sleep easy on that thought.
Let me know how it goes.....and if he mentions botox....say NO!!
Tracey
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jonny
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Re: initial appt with neuro??
« Reply #5 on: Nov 30th, 2003, 1:00am » |
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Chill babe.....at most you will be bored....thats it!
............................jonny
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Rick_K
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Re: initial appt with neuro??
« Reply #6 on: Nov 30th, 2003, 3:06pm » |
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I first went to Dr. Mathew in 1998 and had a cat scan right in his office. Both Mathew or his associate (I can never remember her name) will do you right. Don’t let the looks of the office bother you, kind of dumpy, they know their stuff and will give you the meds you need. He tried to get me to go to Houston for some kind of, in the hospital, drip treatment but I could not bring myself to try that. Since they are only in Dallas once a week I have had to wait a month to get in. Thankfully my regular doctor will give me oxygen and imatrex with just a phone call. I trained him right.
Good luck on your appointment just be sure you understand him, he has always taken the time to answer all my questions. One more thing, always use the Dallas phone number it transfers to Houston when they are not in town so you don’t half to pay long distance charges just to talk with his office.
Rick
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Little Deb
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Re: initial appt with neuro??
« Reply #7 on: Nov 30th, 2003, 4:19pm » |
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Hi Renee,
Like everyone said, chill. You are getting uptight for nothing. If you are lucky, you might get a doc that will listen a little, and give you some valuable info and help. If not, you will get an airhead who babbles some stuff, says take these samples and see me again in 2-3 weeks.
Anyway, go to the OUCH site and look for the forms that your doc can sign for you if you need treatment in the ER again, so you don't get treated like a narcotic seeking, hypochondriac, whiner.
Let us know how you make out.
Little Deb (still searching for a cluster smart doc) 
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don
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Re: initial appt with neuro??
« Reply #8 on: Nov 30th, 2003, 4:44pm » |
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To my knowledge there is no diagnostic test FOR CH.
Only diagnostics to discount other types and causes.
The diagnosis depends on three things.
1. The neuros familiarity with CH.
2. You teaching him if he don't.
3 His/Her's willingness to listen and learn
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LasVegas
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Re: initial appt with neuro??
« Reply #9 on: Nov 30th, 2003, 6:50pm » |
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Renee,
First of all, expect the neuro knows nothing, few do. It is your responsibility to yourself to action. Read a thread I started a couple months back in this general post section titled "Educating the neurologist." I'm confident you will find it of help. In short, I was nervous prior to my visit and after I left felt bvery pleased. The MRI, MRA, CAT Scan are all typical head tests. Some insurance companies, like mine, will not find CH's symptoms to warrant the test and they will deny you. I am appealling my denial. Most of the time, those tests do not find a thing. I would pack your ammo bag with a cluster quiz filled out (click on right side of screen) and some very basic symptoms and treatment info about CH's to educate your doctor. I would DEMAND a script or oxygen (see right side of screen for what you will require) and also Imitrex injections, nasal spray and pill form prescriptions. If one runs out, you may have an alternative. Again, insurance companies sometimes limit quantities, so at least you may have an alterntive abortive medication. As for preventatives, the most common are Prednisone and Verapamil. Narcotics and OTC medications are not as worthy and often innefective for treatment. Read as much as you can here and on the OUCH board and you will be fine. The biggest thing to remember is if you have questions or need to vent, we are here for you. Check the archives on "Educating the neurologist." Good luck and try to relax, it will go fine as long as you are educated which will bring you confidence. Good luck,
Gregg in Las Vegas
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Wishing all a Pain Free 2008!
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Renee
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Re: initial appt with neuro??
« Reply #12 on: Nov 30th, 2003, 8:38pm » |
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Gregg and all the rest,
Thanks for all the input. I will have both guns armed when i go in on wed. now. i went thru all the links gregg supplied plus the thread and will print out most and take with me.
Not sure whether it will be needed or not as I know Roxy goes to the same clinic already and they are CH treaters.
i feel a bit better but will feel best after it is over and i see how i react to any side effects of meds and get some help with this pain. if i am pf, which is not very often, i fall asleep from just taking 2 aleve..thus i have very low tolerance for side effects.
will update y'all once i see the neuro on wednesday.
thanks for your input, advice and support. i was SO lost before I found y'all.
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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TxBasslady
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Re: initial appt with neuro??
« Reply #13 on: Nov 30th, 2003, 9:50pm » |
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Renee,
You are gonna do jus fine at the doc on Wed. 
You and I talk alot.....I don't think things could get much worse
So, keep your chin up about the doc visit, sweetie. I think alot of good will come of it. 
I plan to call you before your dr visit....then I will most definitely talk to you afterwards.
Hang in there!!!!!!! Just a couple more days to go. You CAN do this.
Love and pf vibes to ya...
Jean
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Charlie
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Re: initial appt with neuro??
« Reply #14 on: Nov 30th, 2003, 10:16pm » |
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Not to worry. As a rule, neurologists are an odd bunch. They tend to think no one has anything in the gray matter they are paid to examine. They're usually quiet and the kind of guy you'd find alone in a back booth at the diner.
Jonny is right. There is nothing so painless or as boring as a neurological exam.
Good luck and fill us in on all the dope afterwards....
Charlie
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