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Topic: just got back from a neurologist.....finaly. (Read 822 times) |
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schaan
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My Headache Blows your Migrane Away!! :(
    
 
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just got back from a neurologist.....finaly.
« on: Oct 9th, 2007, 5:31pm » |
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after my first attack 1/11/2000 i am finally on a path to managing the most debilitating experinces of my life. i never even had any kind of headache untilll i was 33 and it was like someone had put out a contract on my sanity as the first of what i now know are cluster headaches attacked me.
my primary care physician recommended a ct scan after years of somewhat correct diagnosis then sent me to a neurologist (finally) and the found an arachnoid cyst somewhere in the middle of my brain.
i thought YEAH !!! finally something can be done !!! then he says that it has been there for years and had nothing to do with my attacks.
at least i can quit eating my cocktail of cafergot/excedrin/tylenol mixture i have been washing down with mud at the onset of an attack. i got imetrex shots/ and i hope it works better than the cafergot/ergotomine and lithium ive been taking with less than stellar results.
also bought a oxy tank since i hear good things about that and i like the all natural attempt as i quit drinking and smoking a few years ago in an attempt to resolve this to no avail.
most occur right after i fall asleep and if i dont catch it i wake up full blown and physcotic , punching numerous holes in the walls with my fist and hands. ( ive become pretty accomplished at sheetrock repair and avoiding studs as they hurt alot more and are more difficult to repair) ha ha not really funny but funny.
i have to apologize for the lowercase rambling but i seem to have no time for correctness. thank goodness i found a place to learn more of my affliction and possibly help another if i can.
i read the home page and tears came to me as i read such similar recountings.
well ill see ya here and there once and awhile.
thanks for this place i cant wait to explore more.
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| « Last Edit: Oct 9th, 2007, 11:08pm by schaan » |
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this place gives me hope when i had none.
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Bob_Johnson
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Re: just got back from a neurologist.....finaly.
« Reply #1 on: Oct 9th, 2007, 7:07pm » |
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Now, the learning begins!
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
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Explore the OUCH site (left) and the other buttons.
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Bob Johnson
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schaan
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My Headache Blows your Migrane Away!! :(
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Re: just got back from a neurologist.....finaly.
« Reply #2 on: Oct 9th, 2007, 9:52pm » |
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thanks
ive been looking for the reasons why, what exactly is happening, ill check out the 2000 version since i can almost afford it.
on Oct 9th, 2007, 7:07pm, Bob_Johnson wrote:Now, the learning begins!
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
=================
http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
============
Explore the OUCH site (left) and the other buttons. |
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this place gives me hope when i had none.
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MR_FLOOR
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Re: just got back from a neurologist.....finaly.
« Reply #3 on: Oct 11th, 2007, 12:02am » |
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Hello Schaan,
It's good you found this place,you can learn much.
Have you asked your doc about Verapamil,I have had much success with it.Also try energy drinks,(Red Bull,Monster ect..)anything with taurine and caffeine in it,at the first sign of
a hit slam one down as fast as you can.I know it sounds hokey and I didn't believe it at first,but it does work,sometimes I have to drink 2 for it to work,but they almost always work and when they don't I will take an Imitrex jab.Either way energy drinks are better for you then Imirtrex. Well good luck and keep reading and never stop asking questions.
Dave
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schaan
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My Headache Blows your Migrane Away!! :(
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Re: just got back from a neurologist.....finaly.
« Reply #4 on: Oct 11th, 2007, 12:26am » |
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wow didnt expect that response. my wife thinks the N.O.S. drink i love (only one that dosent taste like pure sugar ) was causing my more intense attacks. guess not? i just got my first imitrex script and im cheap so i wont use it till i get a really bad one or two in a row. im thankful ive never had more than 2 in one day, lots of upstarts but i knocked em down with mud ( Massive UnDecaffienated ) coffee and aspirin/tylenol/ibruprofen cocktail. i didnt know what worked so i mixed it all. more caffiene seemed to help faster, course then sleep went away,
i started presidone yesterday and im gonna run its course since its paid for.
dr. swanson scripted me another drug but im waiting till i finish this other stuff.
i probably should be posting this somewhere else?
thanks guys untolerable pain free days 22!!!!!!!
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this place gives me hope when i had none.
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DennisM1045
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Re: just got back from a neurologist.....finaly.
« Reply #5 on: Oct 13th, 2007, 10:24am » |
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Hi Schaan,
Posting here is fine. Whatever works for you.
Careful with the OTC meds. Tylenol can ruin your liver just as effectively as any other medication. Don't EVER go above the perscribed dosage. It just isn't worth the long term damage.
Have you talked to your Dr about Oxygen? High flow 10-15lpm, 100% O2 is a great abortive with almost no side affects. It knocks most of my hits out leaving the rest for Imitrex injections to take care of.
Pred should buy a break in the short run but when he tapper ends you'll get slammed again hard if you haven't ramped up on a preventative med. What was the other script the Dr gave you?
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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schaan
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My Headache Blows your Migrane Away!! :(
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Re: just got back from a neurologist.....finaly.
« Reply #6 on: Oct 14th, 2007, 1:14am » |
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well my liver is probably toast for the amount of aceteminephen ive taken over the years, especialy since i drank for many years while doing the tylenol3 thing. i probably never took less than 2 or 3 times reccomennded dose of anthing i ever took.
ill look tommorow on the other script.
thanks
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| « Last Edit: Oct 14th, 2007, 1:15am by schaan » |
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this place gives me hope when i had none.
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RichardN
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Re: just got back from a neurologist.....finaly.
« Reply #7 on: Oct 15th, 2007, 1:07am » |
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Hi Schaan and Welcome to Clusterville
Another vote for 02 here. I can't take Imitrex (some arterie blockage and high cholesterol) . . . so 02 is my only abortive . . . can usually kill the beast in minutes if used early-on in the attack. Many here use the 02 first, and then if not able to abort . . . go for the Imitrex (make sure you see the "imitrex tip" (link on left).
I am a "head trauma" CHer. I nailed my noggin 1/01 and the ha's started . . . a year of CTs, MRI, mis-diagnosis, non-working meds . . . the attacks became worse and more frequent. I used to take one or two Goodies powders when I felt a hit coming on, and thought they helped because the attacks would often disipate within 20-30 min., then whoosh . . . go away and my response would be DAMN! . . . give me a beer. It wasn't til my wife found this site for me 2/02 that I learned that most attacks last 20-45 min, with the occasional 1 1/2 - 2 hr monster . . . all I was doing with the Goodies powders was eating up my stomach lining . . . and then triggering another attack with another beer or shot of brandy. When I got here, I was having 6-8 attacks per day and sometimes 3-5 at night . . . a real basket case . . . afraid to sleep . . . afraid of the next one.
These guys gave me a name-for-the-pain and the info/ammunition to fight our common beast. Verapamil and 02 finally gave me some control and the ability to stop most of the attacks before the "dance" stage.
Melatonin did work for me . . . but be prepared for some grogginess. I am also absolutely convinced that water therapy (see "water X 3" link on left) has helped me reduce the frequency/intensity of attacks.
For some reason, I've been mostly PF this spring and summer . . . don't know why . . . don't care why . . . just very grateful. Alchohol is still a major trigger and two sips of my wife's brandy will have me huffing 02 within 10 minutes . . . but I can kill him in 5 min.
You have much to read and many questions to ask . . . fire away . . . there is a wealth of info here and the answers you get come from folks who truly know your pain.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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schaan
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My Headache Blows your Migrane Away!! :(
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Re: just got back from a neurologist.....finaly.
« Reply #8 on: Oct 15th, 2007, 11:54pm » |
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thanks richard
best reply yet.
the med ive been prescribed is calan 80mg tablet
one oraly twice daily for one week
then one po? tid?
whats the last part mean?
someone have a link where i can buy the mask i need ( cheap please !!!! )
i got a bottle, working on a hose
oh and a regulator too?
may use my oxy/acetalyne requlator if it will work
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this place gives me hope when i had none.
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schaan
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My Headache Blows your Migrane Away!! :(
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Posts: 172
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Re: just got back from a neurologist.....finaly.
« Reply #9 on: Oct 15th, 2007, 11:57pm » |
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you mentioned head trauma.
this has not been discussed with my doctor as of yet.
ive had several cuncussions and put myself in a coma for 9 days after another motorcycle accident.
what should i inquire about since my doc and i are kinda learning about this together.
wish he charged me accordingly 
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this place gives me hope when i had none.
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Charlotte
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Re: just got back from a neurologist.....finaly.
« Reply #10 on: Oct 16th, 2007, 9:15am » |
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Don't wait until you finish the prednisone to start Calan. Calan is verapamil. Start it now. It sounds like an escalation direction. One twice a day for a week, then three times a day, by mouth. (I am sorry I didn't see this sooner.)
Charlotte
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| « Last Edit: Oct 16th, 2007, 9:22am by Charlotte » |
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RichardN
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Re: just got back from a neurologist.....finaly.
« Reply #11 on: Oct 16th, 2007, 3:47pm » |
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Hey Schaan
If I remember correctly, about 16-20% of us started this hell with head trauma . . . I seldom had any type of headache before. I hit my head (HARD) about 3 1/2" above my right eyebrow (and yes, I am a right-side CHer)
The Calan (Verapamil) is a taper drug, and when I came here was advised that it probably wouldn't do much good til I reached 180-240mg. Sure enough, I didn't have my first PF day til I hit 240mg (had three attacks that night, but had the 02 to kill them in about 15 min . . . but it was a WONDERFUL day . . . the first PF day in a very long time) I got as high as 480mg (many here use considerably more and in combination with other meds such as lithium), then settled on 360mg for a year or so. Be prepared for the Verapamil "buzz" which some find disconcerting til you get used to it . . .normally (for me anyway) gone within 45min of taking. Also, as the dose increases, you may experience some constipation . . . this is normal . . . and easy to alleviate with stool softeners if needed.
If you have a regular welders 02 tank, contact Jonny (his link is on the "oxygen info" link on the left) and he will help you with what you need. DO get a Clustermasx . . . MUCH more effective than the regular non-rebreather mask. Clustermasx is about $25 . . . I think I recently read that they may be in a back-order situation right now, but I'm sure someone here will send you the right link to find out (I'm sure Jonny knows).
Another note on the Verapamil (Calan). Make sure your doc is monitoring blood pressure. I stopped taking Verapamil about 5/04 prior to starting chemotherapy, as my blood pressure became uncomfortably low. . .. also stopped other meds (Altace, Lipitor, Zocor,Zetia) at the same time . . . my personal decision as I just didn't want to overwhelm my system with chemicals, PLUS the chemo "juice" . . . happy to report I'm three years out of chemo and the numbers remain good.
Most happy to hear you have a doc willing to work/learn with you . . . it's getting better (in my opinion due in large part to this site), but all too often sufferers' biggest problem is finding docs willing to listen.
One more note on the 02. Your welders tank will be fine for home use, but you'll want to get a script for med 02 and a few "E" tanks to carry with you (these are the green topped tanks (about 3ft tall) you see all over the hospitals and in any docs office. You can buy your own 15lpm regulator on ebay for about $50. I keep 10 "E" tanks and have two regulators . . . one on tank by my bed and another on tank (with spare tanks) in my van. The key to 02 is to use at the earliest onset of an attack . . . kill him early . . . don't wait til it hits Kip 4-5. I can live with the beast as long as I don't have to "dance" with the bastard.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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