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Hello, I'm the new guy. (Read 2088 times)
klusterkevin
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Hello, I'm the new guy.
Jul 18th, 2008 at 1:02am
 
So it's been 2 yrs since I quit smoking and 2 yrs without clusters.
A few months ago, I began lighting up a cigarette for no good reason.
The clusters are back. And I am afraid they might have turned chronic. BECAUSE IT HAS BEEN 3 MONTHS!
I quit the smoking, the drinking and basically turned down the social scene I used to attend.
I travel for a living and had to go to an urgent care Dr. in Oxnard, CA for some imitrex and I let him know I had cluster headaches.
He told me,"No, No, No. You have Horton's Headaches."
I said,"Doc, I've been diagnosed and I've done research. They're cluster's."
He said,"I've been to med school, I know what cluster headaches are."
The whole time, I was thinking, "These are probably two different names for the same damn thing."
And when I looked it up, I called the clinic and left a very informative message for that nice young man. 
You know what, Screw close mindedness. I'm through trying to explain my situation to rocks.
I watch the letters of my streaming sentences bounce of the skulls of these imbiciles, one by one. Blink, Blink, Blink.
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Guiseppi
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SAN DIEGO, CALIFORNIA USA
Gender: male
Re: Hello, I'm the new guy.
Reply #1 - Jul 18th, 2008 at 1:35am
 
Hey welcome to the nut house! The good news is Roll Eyes we don't call you chronic until you go a whole year without a break! My longest cycle in 30 years was an 8 month doozy! Like you i started to worry about going chronic. Several people on the board reminded me you can't really worry about it, if it happens you deal with it!

Now as to treatment, do you have oxygen yet? Far cheaper then imitrex, no side effects and incredibly effective, read the lnk on the left but the basics are:
1: Pure Oxygen
2: Using a non re breather mask
3: high flow rate at least 15 LPM
4: start at the first hint of a headache.

I can abort in 6-8 minutes using oxygen, many on the board have similar experiences, certainly worth investigating.

The other thing to look into is a good preventative regimen, a medication you take while on cycle to reduce the number of times you7 get hit and the intensity. I use lithium, other popular prevents are verapamil and topomax. Lot's of reading for you to do on those to discuss with your neuro!

Glad you found us, hope we can help ya!

Guiseppi
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Bob Johnson
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Kennett Square, PA (USA)
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Re: Hello, I'm the new guy.
Reply #2 - Jul 18th, 2008 at 8:49am
 
Time to find someone with skill !

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.




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Bob Johnson
 
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BarbaraD
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Hugs to ya


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Douglasville, TX
Gender: female
Re: Hello, I'm the new guy.
Reply #3 - Jul 20th, 2008 at 9:08am
 
klusterkevin wrote on Jul 18th, 2008 at 1:02am:
He told me,"No, No, No. You have Horton's Headaches."
I said,"Doc, I've been diagnosed and I've done research. They're cluster's."
He said,"I've been to med school, I know what cluster headaches are."
The whole time, I was thinking, "These are probably two different names for the same damn thing."
And when I looked it up, I called the clinic and left a very informative message for that nice young man.  
You know what, Screw close mindedness. I'm through trying to explain my situation to rocks.
I watch the letters of my streaming sentences bounce of the skulls of these imbiciles, one by one. Blink, Blink, Blink.  


My old GP called them "Horton's syndrone" "histimine headaches" and a few other names, but he did what I told him and got me in with a great neuro (who actually knows CH) so I got over it. He said in med school they didn't get much on headaches and he was way out of his field (he was old enough to admit he didn't know anything about CH but learned a lot with me).

It doesn't do much good to get mad at these "god-like" wonders in urgent care -- but it makes you feel better to get your feelings out... they tell me it gives you gas to hold your feelings inside - I always hated gas... Cheesy  Seriously, I usually figure up exactly what they did for me and "pay" them accordingly (with a letter outlining it).

Now take a deep breath. Get some O2 and let us know how you're doing....

Hugs BD
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What don't kill ya, Makes ya stronger!
 
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GrandPotentate
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mmmmmmmmmm


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Michigan City, IN  USA
Gender: male
Re: Hello, I'm the new guy.
Reply #4 - Jul 21st, 2008 at 11:17pm
 
Get the referral to a good doc!  Many of us suffered for years (without the help from this site) before we found someone who could really help.

O2 has been very very good to me.  A few slugs of caffeine usually gets me through the workday.  Rad up on both.  Your mileage may vary.

You'll find lots of differences of opinion on smoking.  I think it reduced the frequency of my cycles, and severity of the hits.  But how does one really know for sure?   I think that the elevated CO and other chemicals dancing around in my head from smoking probably had some effect.  But maybe not.  Smoking doesn't cause CH.  But there is one certainty on the plus side: I'm several thousand bucks ahead - that is easily quantified!  And I am healthier and better able to deal with the beast.

The beast goes by many names.  Don't get overly pissed at the doctors.  You've got a rare thing, and most docs lack experience in treatments.  Keep shopping and asking for referrals until you get one with experience (best) or willing to research and learn ( a distant second best).  Stay away from the poor listeners.   The OUCH site was not useful where I have lived and suffered.  I wish you better luck.



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Jon
 
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maalstroom
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the hell I will!


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the Netherlands
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Re: Hello, I'm the new guy.
Reply #5 - Jul 21st, 2008 at 11:54pm
 
Horton's Neuralgie seems to be the official name for CH in the Netherlands, although it's generally refered to as clusterhoofdpijn .... which is clusterheadache as you could guess.
So I can understand that your doctor called them Horton´s Headache, maybe just another English term for an evil entity.
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...AND AS A FINISHING TOUCH, GOD CREATED THE DUTCH.
 
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CostaRicaKris
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AFC half Marathon


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San Diego, California
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Re: Hello, I'm the new guy.
Reply #6 - Jul 22nd, 2008 at 12:58am
 
Energy Drinks!!
If you have no other meds (you didn't mention any) try drinking an energy dring with 1000mg of Taurine and caffine (Redbull, Rockstar) Drink it at the first sign of a hit or for shadows - it can be amazingly effective and you don't need to wait to find a  Dr who knows what he's doing to get a prescription!

Welcome
~Kris
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George
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Black-Billed Magpie


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Boise, Idaho USA
Gender: male
Re: Hello, I'm the new guy.
Reply #7 - Jul 22nd, 2008 at 1:30am
 
I'm not sure when the term "cluster headaches" came into use, but when I was first diagnosed by an observant GP in 1969 or 1970, he used the term.

Best,

George
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« Last Edit: Jul 22nd, 2008 at 1:30am by George »  

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Karl
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Re: Hello, I'm the new guy.
Reply #8 - Jul 22nd, 2008 at 9:39am
 
I also believe in energy drinks an oxygen but dont rule dissolving Zomig (high dose) it can be very effective in place of imitrex. for me the combination of the three delivers a heck of a punch in that cage match of the hit we all get.
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