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medicjeff505
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Finally a Dx
« on: Aug 1st, 2007, 7:18pm » |
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so i was diagnosed with cluster headaches yesterday. it has probably been 15 years since they began and they always take breaks so it hasnt been consistently going on. i started getting them late summer mostly exercise induced. i have had my head scanned by two different drs... been treated for migraines... sinus infections... and yes allergies too. i havent had a headache in 4 years now and they decided to come hang out with me again two weeks ago. so i go see a new dr. yesterday and within minutes she throws out cluster headaches. i left her office with topamax to get going on the preventative and some samples of zomig maxalt and imitrex inhaler. i have used amerge and imitrex in the past with good success. i am pretty thrilled to hopefully be on the road to preventing these things with my new meds as well as all the info i have been soaking up today. well i just wanted to chime in real quick. as unfortunate as this situation is i was so excited to find this website. cheers....jeff
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Linda_Howell
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Re: Finally a Dx
« Reply #1 on: Aug 1st, 2007, 7:32pm » |
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Jef,
Please be aware of the likely side-effects you will be experiencing with Topomax.
That said...I wish you would have asked for Oxygen. Is there a way you can call and get a script for it? 02 is a very good abortive for more than 70% of us and has no side-effects and it's cheap compared to what we pay out in other meds.
You must have a regulator that goes to at least 12 lpm 15 is better...and a non-rebreather mask.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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medicjeff505
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Re: Finally a Dx
« Reply #2 on: Aug 1st, 2007, 8:12pm » |
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was not made aware of any potential side effects. what should i be looking for. i am a paramedic so i am pretty familiar with this med as i have picked up many patients that are on it for seizures. i also have access to O2 because of my job so i will be getting a home set up as well. thanks for the input...jeff
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Linda_Howell
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Re: Finally a Dx
« Reply #3 on: Aug 1st, 2007, 8:37pm » |
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Topomax is not for the faint of heart, or if you want to remember your parents names, where you parked your car, or some other horror stories I've heard here.
Here is just the most recent condemnation.
Quote:
Topo gave me kidney stones twice, the first time requiring immediate surgery. I stopped taking the drug after the second stone and I haven't had one since (5 yrs). BTW, stones hurt like a B&*%^ too !!
And oh yea, one other side effect, brain activity ( It'll dip to an all time low! ) |
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There are more but I don't want to scare you. Just make sure this is the right med for YOU by asking your Dr. In all the years I've been here I do not recall one person saying it helped or at the very least maybe a little.. 
We unaffectionally call it DOPE-omax here. Linda
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Redd
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Re: Finally a Dx
« Reply #4 on: Aug 1st, 2007, 9:28pm » |
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http://www.brightok.net/~mnjday/chtherapy.pdf
Read this, print it out and take to your attending Doc.
It spells out the treatment options and you can then discus it all.
Linda is right that topomax is sort of a double edged sword. It helped me with the frequency and intencity of the attacks, but the trade off was being dumb as a bag of hammers as Racer Bill would say.
O2 should be a first line accute treatment. Most people need 15 lpm. with a non-re-breather mask or clustermasx.
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Linda_Howell
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Re: Finally a Dx
« Reply #5 on: Aug 1st, 2007, 10:32pm » |
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Here is another testimonial I just found while researching Topomax...just so you can be more informed.:
. TOPOMAX IS A VERY POWERFUL DRUG. MY DR. GAVE IT TO ME FOR SEIZURES. EVERYTHING SEEMED OKAY AT FIRST. BUT, AFTER A YEAR OF TAKING THIS DRUG THE SIDE EFFECTS REALLY STARTED TO BE NOTICED BY FAMILY, FRIENDS, AND MOST IMPORTANT MY LITTLE 9 YR. OLD BOY AND MY HUSBAND.THE EFECTS WERE UNREAL I TURNED INTO A DIRRERENT PERSON VERY MEAN. MY SIDE EFFECTS WERE TINGLING SENSATIONS, CLUMSINESS,CONFUSION,VISION PROBLEMS, MEMORY PROBLEMS, NERVOUSNESS,COULD NOT PAY ATTENTION,LOSS OF APPETITE,AGGRESSION,VERY ILL,WEIHT LOSS NO SEX DRIVE, TROUBLE BREATHING. I AM NOW COMING OFF OF THIS DRUG AND PRAY FOR ANYONE WHO IS ON IT I HOPE WHAT I HAVE TO SAY WILL JUST HELP ONE PERSON. THIS IS NOT A GOOD DRUG
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Bob_Johnson
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Re: Finally a Dx
« Reply #6 on: Aug 2nd, 2007, 9:25am » |
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Jeff, you are in a position to appreciate these titles:
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.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
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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)
http://www.brightok.net/~mnjday/chtherapy.pdf
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Bob Johnson
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Guiseppi
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Re: Finally a Dx
« Reply #7 on: Aug 2nd, 2007, 10:28am » |
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A para medic! Welcome to the board, thought sorry you had to find us. When I use oxygen, I use an old modified, push button/demand regulator. To be effective you need to start the 02 as soon as you get that tingly scalp, tightening neck oh sh%# here it comes feeling. It needs to be pure 02 with no outside air and don't re breathe your own air, so re breathers and nasal canulas are worthless.
Used like that it'll completely abort a head ache for me in 6-8 minutes. I usually use 200 pounds or less off an e-tank per headache.
Never tried topomax so i can't chime in on that. Congrats on finally getting a diagnosis, that's a huge part of the battle. Stick around and let us know how this run goes!
guiseppi
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medicjeff505
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Re: Finally a Dx
« Reply #8 on: Aug 3rd, 2007, 11:25am » |
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first off thanks for all the replies....
having worked in medicine for some time now i know that prescribed medications have an expected effect on patients and sometimes that is not always the outcome, the risk of side effects always exist. i am very new to the dx of cluster headaches and am soaking up as much information as possible. i feel so much more educated on the topic now just from this website and message board than i was just three days ago. i can say that yesterday i worked a 24 hour shift on the ambulance headache free. i was pretty nervous about the shift but i also was ready to slap on some O2 if needed. today is a new day and we shall see what happens. thanks again for all the links and advice...jeff
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