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Topic: Newly diagnosed (finally!)... Advice? (Read 475 times) |
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sd_matt
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Newly diagnosed (finally!)... Advice?
« on: Jan 30th, 2004, 3:11am » |
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Greetings all. I'm glad to have found you. Until yesterday I'd never heard of CHs. On my umpteenth visit to the ER, a nurse (not a doctor, mind you) heard my symptoms --and actually listened beyond "headache" this time, thank God-- and remarked off-the-cuff that "it sounds like cluster headaches." Unfortunately, the doctor was clueless and prescribed Vicodin (again) and Amoxicillin for a non-existant sinus infection, but then I came home and found your website.
I had my first CH incident about 8 years ago (I'll be 30 next week, yikes) and I've been having them ever since at least twice a year for between a month and six weeks at a time. My latest bout, however, began on Thanksgiving day (lucky me) and is ongoing. The most intense I've ever had. I was up at 4:00 this morning with my face pressed against the cool bathroom floor (with my cat licking my face, bless her heart). I'm having two or three "attacks" (sorry, I haven't got the lingo down yet) each day: very early morning, mid-afternoon, and bedtime.
Anyway, that's my story-- now my question. I am uninsured and absolutely can not afford repeated trips to a doctor's office (I had just started a new job when my latest bout began, and had to let it go a couple weeks ago when I had to call out for the third time in a week). So I need to gain as much from each visit as I can.
What sort of treatment option should I seek out first? What is most likely to cause some relief? Besides the oxygen treatments (which the ER nurse actually mentioned), the plethora of medications mentioned here is somewhat overwhelming.
Actually, any advice someone could give for approaching my first visit to a neurologist for this problem would be much appreciated. I fear getting another clueless doc and having to educate him.
Many thanks. This site is a godsend.
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JohnM
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Re: Newly diagnosed (finally!)... Advice?
« Reply #1 on: Jan 30th, 2004, 3:58am » |
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Welcome Matt, glad you found us.
Painkillers are useless for this affliction as you have probably found out by now.
Many have success with O2 but it is not exactly convenient for use at work!
Avoid alcohol at all costs when in cycle. They bring on a HA rapidly for most guys here.
Many take a cocktail of drugs to try and control the CH, but I have been that route many times over the past 30 years or so with this bastard and had very little success, and the side effects are usually not very nice. You are too young to allow yourself to get fucked up with these drugs.
as regards drugs the best available for stopping a single headache in it's tracks within about 10 mins is the imitrex or imigran injection (same thing depending on what country you live in). It is NOT a painkiller, It constricts the blood vessels in the brain to reduce pressure on the nerves (or something like that) It is very expensive, but is really good to have for times when you really need it, like at work when you just HAVE to be able to perform properly.
Imitrex comes in 3 forms - pills cheapest (useless for CH in my opinion - it takes far too long to work, if at all) nasal spray medium cost - this is very hit and miss and doesn't work for me, and Injections - most expensive (don't be put off, they are easy to self inject with the auto inject kit) and works fantastic every time in about 10 mins or less. Many here swear by it.
If you can use O2 at home and Injections for real emergencies away from home then you may get through a cycle with less pain. With time you may be brave enough to try the Imitrex tip to make the injections go 2 or 3 times further to keep the cost down. Read about it on this site (see "buttons on the left"
There are other options like the magic mushroom therapy, or my own personal favourite the detox diet to break the cycle, but read, read, read here first.
John
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Moderation in everything; including moderation!
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KingOfPain
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Re: Newly diagnosed (finally!)... Advice?
« Reply #2 on: Jan 30th, 2004, 5:29am » |
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sd_matt,
Suggestions:
Take the cluster headache quiz.
http://www.clusterheadaches.com/quiz.html
Then, see the medical info.
http://www.clusterheadaches.com/about.html
Read it, print it, take it with you
when going to the Dr.
Your to do list (possibly) :
Neurologist (one who is versed in CH)
Oxygen (with a non-rebreather mask)
Abortives (triptans...imitrex, maxalt, zomig)
Preventatives (verapamil,etc...)
Welcome aboard.
Pain Free Days And Nights To You.
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| « Last Edit: Jan 30th, 2004, 7:09am by KingOfPain » |
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Arrived August, 1999.
We swallow greedily any lie that flatters us, but we sip only little by little at a truth we find bitter.
- Denis Diderot
Real friendship is shown in times of trouble; prosperity is full of friends. - Euripides
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edavid
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Re: Newly diagnosed (finally!)... Advice?
« Reply #3 on: Jan 30th, 2004, 6:01am » |
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Me too -- new that is – at least new to being diagnosed as cluster headaches.
A little over four weeks ago I experienced the return of a headache of outrageous intensity that I had experienced seven years ago. After first being examined by my primary doctor, two internists, one ophthalmologist (for the drooping eye lid and contracted pupil) I saw the first neurologist. It was amazing to me that, until the neurologists, none of doctors recognized what appear to be ‘classic’ symptoms of cluster headaches. (In the meantime, I was prescribed enough narcotics to make an addict salivate. Unfortunately, they provide no relief whatsoever.)
I just finished having an attack about an hour ago. The attack was aborted after I used Imitrex. Before I got the prescription I used to just ‘macho it out’ by walking/jogging around the house, pressing my head, drinking very strong coffee, etc. The Imitrex is a vasoconstrictor and provides me (not everyone, I understand) with relief within minutes. The pharmacy does not want to give you much of it and it is not cheap. I have ordered Oxygen – we will see how that works
I ask for a prescription both after reading this website and the other excellent source of information which is sponsored by O. U. C. H. [Organization for Understanding Cluster Headaches]. Both have an amazing amount of information concerning abortive and preventative medications, research, et cetera. You will, unfortunately, become more knowledgeable in a few hours than most of your physicians (or at least my physicians) about this affliction.
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magman
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Re: Newly diagnosed (finally!)... Advice?
« Reply #4 on: Jan 30th, 2004, 6:21am » |
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on Jan 30th, 2004, 6:01am, edavid wrote:| (In the meantime, I was prescribed enough narcotics to make an addict salivate. Unfortunately, they provide no relief whatsoever.) |
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.......MAJOR DITTO!!! Almost 20yrs of mis-diag has me very resistant to pain meds. When I DO need em for surgery or some other reason [arthritis, etc], oxycontin is the only one that does eliminate the pain AND not cause rebounds or bring on a new cycle of CH.
Welcome Matt, yo have found a new home of caring CH'ers and a resource with a wealth of information. Read, read and read some more.
Wishing you PFDAN,
-dan
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t_h_b
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Re: Newly diagnosed (finally!)... Advice?
« Reply #5 on: Jan 30th, 2004, 6:53am » |
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A big hand for that ER nurse-- saved you from years of suffering--find time to drop back by the ER and thank him or her.
You might try melatonin (regular release) at bedtime. It's almost done away with my headaches and you can get it at any drugstore or vitamin shop. You can start off with a low dose (0.5mg) and work your way up to a large one (10-12mg). It's helped a lot of people but it doesn't work for everyone.
O2 is the cheapest abortive and one of the most effective.
Verapamil is a cheap preventative, especially if you order it from drugstore.com or from Costco--definitely shop around on price and try Wal-Mart if there's no cheaper alternative. B&M pharmacies like Walgreen's will often honor their own online prices.
Any MD can write for the prescriptions--you don't absolutely need a neurologist. You have to be knowledgeable and take charge of your treatment anyway.
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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stevegeebe
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Re: Newly diagnosed (finally!)... Advice?
« Reply #6 on: Jan 30th, 2004, 7:30am » |
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Welcome Matt.
Print out information on meds and bring it with you. Discuss a plan of action that may allow you to call in to determine if what you're taking is having any results. It can't hurt to ask. Ask for samples, or beg, like I do.
Be prepared to change the mix if it's not working. What works for some, may not work for others.
Welcome to Clusterville and good luck.
Keep us posted.
Steve G
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thomas
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Re: Newly diagnosed (finally!)... Advice?
« Reply #7 on: Jan 30th, 2004, 8:23am » |
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Try to get an abortive that works for you....... That is priority number one.......... suggestions - O2, zomig, amerge, or axert...... then try the various preventives.... prednisone/verapamil, melatonin..... there are a lot of different preventive treatments...... your doc can work with you on it....... Then read this site until you eyes pop out of your head (I know it already feels like one of them is gonna any minute) Welcome aboard. 
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CJohnson
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Re: Newly diagnosed (finally!)... Advice?
« Reply #8 on: Jan 30th, 2004, 8:46am » |
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No insurance? Prednisone is another preventative which is dirt cheap. I believe a 5 day course is 5 bucks without insurance. Shouldn't experience much sides from a 5 day course and it could break your cycle, or at least give you a break.
You will need a good abortive strategy. A routine that minimizes the pain level and duration once an attack begins. Everyones routine is a little different, but everyone needs one. One routine that doesn't require insurance, and which works for some, is vigorous exercise at the onset of attack. Try doing some squats with some manageable weight as soon as the headache begins. Or go for a run - up a hill is best. You may find the duration and severity significantly reduced. Then again you might not.
The Fellowship of the Indole Ring may have answers.
*needlessly cryptic*
PFDANs
-Curtis
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Through water and fire. From the lowest dungeon to the highest peak, I fought the Beast. Until at last, I threw down my enemy and smote his ruin upon the mountainside.
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thomas
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Re: Newly diagnosed (finally!)... Advice?
« Reply #9 on: Jan 30th, 2004, 8:52am » |
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on Jan 30th, 2004, 8:46am, CJohnson wrote:
The Fellowship of the Indole Ring may have answers.
*needlessly cryptic* |
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LMAO, thanks Curtis....... 
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Giovanni
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Re: Newly diagnosed (finally!)... Advice?
« Reply #10 on: Jan 30th, 2004, 9:54am » |
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Welcome Sd_matt,
Ditto to the above. Imitrex injections work with me in less than 5 minutes if taken early enough. Verapamil at a least 360 with melatonin helps a bunch as a preventative (for me). One thing you'll really see is that one medication may work for one person and not another. Kinda hit and miss cocktail until you find the right combination. When you go to the doc, request some sample of imitrex injections and try it. The melatonin is cheap and available almost anywhere, ie GNC. Also, the alternative treatment offers much hope: www.clusterbusters.com
I hope you find relief soon.
John
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Prense
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Re: Newly diagnosed (finally!)... Advice?
« Reply #11 on: Jan 30th, 2004, 9:56am » |
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Matt,
You are getting great advice. I just wanted to welcome you.
Chris
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sd_matt
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Re: Newly diagnosed (finally!)... Advice?
« Reply #12 on: Jan 30th, 2004, 1:34pm » |
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Many thanks to you all. Your advice has been and will be (I'm sure) very helpful. What a giddy sense of relief to finally meet some people who know what the hell I'm talking about!
It just baffles me that a minute and a half on this site did more for me than 8 years of ER visits, cat-scans (and various other trips through giant humming machines that I can't even name), narcotics (I'm not a Limbaugh yet, but close), and doctor-hopping.
I missed yet another promising job interview this morning because my visitor decided to drop in at 8:30 rather than his usual 4-5:00. Bummer... but just knowing that you are all out there has helped my outlook already!
Many thanks and big hugs.
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Jackie
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Re: Newly diagnosed (finally!)... Advice?
« Reply #13 on: Jan 30th, 2004, 2:04pm » |
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Welcome to the board.
My advice.....read all you can on this site and OUCH. Knowledge is power.
You'll find help and support here....this is a great family.
Good luck,
Jacks 
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TxBasslady
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Re: Newly diagnosed (finally!)... Advice?
« Reply #14 on: Jan 30th, 2004, 11:29pm » |
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Welcome to the board, Matt
Hope you find the meds you need to rid yourself of the beast.
Usually someone here around the clock. Let us know how you're getting along.
Jean
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Edna
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Re: Newly diagnosed (finally!)... Advice?
« Reply #15 on: Jan 31st, 2004, 1:01am » |
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Welcome home Matt
From your post I can tell you're one smart cookie. You're getting loads of good advice and we're glad you're here.
Keep us posted on your progress, we care to hear about it.
Stick around with us too......there's also fun to be had around here too.
pf wishes,
EDNA
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