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splitmyheadintwo
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Hello from a newcomer
« on: Jul 19th, 2005, 12:06am » |
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Dear all,
My name is Daniel. I wanted to just introduce myself, and to start off by saying I am so glad I found this site. I knew I'd probably be able to find "resources" on the Internet about my headaches, but I supposed it would be just more information that I already knew from my doctors. What a real relief it was to find a site with actual people who share the condition, with useful, personal advice. Sort of a Headache e-Pinions.
I am 31 years old. I live in New York, I am married and have my first child - a boy of 6 months now. I run my own company providing computer services.
I started getting Clusters somewhere around 5 years ago, give or take a bit. I don't believe any such thing runs in my family.
The first couple of times I got them (initially about once per year for the first two years), I figured ok, I'm under a bit more pressure than I am used to. Working hard, only married a couple of years, lots of new responsibilities in my life. I thought they'd just pass.
At this point in my life right now, however, I am getting cycles several times per year. My most recent one has basically been one long cycle a few months long. I just started seeing a headache specialist last week, who is attacking back at my headaches with actual proactive treatment. This has not been adequately done, in my opinion, by any previous doctors, so I am feeling relieved someone is doing something serious.
The first Neurologist I saw years ago put me on a two-week Indomethacin treatment, which took care of the headaches. Next cycle I got, about a year later, the same treatment did nothing. Then that doctor was not available for 3 months, so I had to find a new Neurologist. This one put me on Depakote, which worked for a few days but then stopped doing anything. Probably didn't even do anything to begin with.
Primary Care Physicians, or, General Internists, have all been basically useless. They just don't know this area of medicine nearly well enough.
The current guy seems very competent. He immediately started me on Prednisone and Verapamil. I'm also going to contact my HMO to see if they would be so kind as to cover the cost of an oxygen tank. I'm going to be getting Imitrex 'StatDose,' or whatever its called. I have a bit more confidence in my current treatment than I have had in any others.
Additionally, I am seeing a Chiropractor just for a couple of weeks basically as a form of physical therapy. I really don't take him all too seriously, but if it helps a little, it's worth a shot. He claims my vertebrae are misaligned and are pinching nerves. I think I recall that is the prognosis all Chiropractors give to everyone  But he did take xrays and he is willing to consult with my other doctor, so I don't think he is a complete joke.
I have rambled a bit, but I'm so glad I found this site, and I just wanted everyone to know I will be frequenting this site now. It looks like a really positive community with a worthwhile purpose for people with this condition. I'll post a picture of myself in the Who's Who thread I noticed.
I wish everyone a good, pain-free night, and I look forward to participating in this community from now on.
Daniel 
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RichardN
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Re: Hello from a newcomer
« Reply #1 on: Jul 19th, 2005, 12:32am » |
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Welcome Daniel
Sorry you have to be here but glad you found this site. My wife found it for me in 2/02, after a year of tests, scans, mis-diagnosis and non-working meds. This place gave me a name-for-the-pain and the means to combat the beast.
So glad you found a doc you like and trust who is knowledgeable about clusters. Do get your 02 as soon as possible . . . . is a miracle for many of us. I can't take Trex (arterie blockage and high cholesterol). so 02 is my only abortive. Make sure you get a 15 lpm regulator and a non-rebreather mask (the one with the bag).
You have much reading to do, and many questions to ask. Don't be shy about asking them.
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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splitmyheadintwo
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I love YaBB 1G - SP1!
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Re: Hello from a newcomer
« Reply #2 on: Jul 19th, 2005, 12:40am » |
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on Jul 19th, 2005, 12:32am, RichardN wrote:
So glad you found a doc you like and trust who is knowledgeable about clusters. Do get your 02 as soon as possible . . . . is a miracle for many of us. I can't take Trex (arterie blockage and high cholesterol). so 02 is my only abortive. Make sure you get a 15 lpm regulator and a non-rebreather mask (the one with the bag).
Richard |
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Indeed, that is precisely what he prescribed. 15lpm via non-rebreather. Sounds like another good sign that he knows his stuff.
Thank you for your warm welcome, and I look forward to participating a lot in the near future.
Daniel.
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| « Last Edit: Jul 19th, 2005, 12:41am by splitmyheadintwo » |
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RichardN
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Re: Hello from a newcomer
« Reply #3 on: Jul 19th, 2005, 1:05am » |
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Daniel
Don't hesitate to buy a lottery ticket tomorrow. Having a doctor prescribe the right regulator and mask on the first visit is pretty much unheard of. Frequently the prescription is hard to get and then it's usually the 8 lpm with a cannula.
A warning about the mask. DO NOT USE THE STRAP ! Hold it in your hand. If, when hit at night you grab your 02 and use the strap, it's very easy to (after the pain subsides) fall back to sleep with the mask in place. If your tank runs out, you'll wake suffocating. The usual advice is to "cut it off", but It's very convenient to hang on the cart . . . . but I NEVER use it.
Melatonin (OTC) helps reduce the frequency and intensity of night hits. Take half-hour before bed (most use 3-9mg) . . . . can make you pretty groggy.
Identify your triggers if possible. The most common trigger (but not everyone) is alchohol. Was for me (quit 2/02)
Let us know when you get your 02 . . . if you have questions . . . . and how it works for you.
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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BobG
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Re: Hello from a newcomer
« Reply #4 on: Jul 19th, 2005, 5:21am » |
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Quote:| I am seeing a Chiropractor . He claims my vertebrae are misaligned and are pinching nerves. I think I recall that is the prognosis all Chiropractors give to everyone |
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You got that right! And you have one leg longer than the other, right?
And you have exactly the number of appointments so that your "cure" will be completed on the very last appointment which also happens to be when your lifetime chiro insurance is used up, right?
Oh, and welcome to the board. Sorry you had a reason to come looking fot it.
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Stay stressed. Never relax. Never sleep. Ever.
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Topical
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Re: Hello from a newcomer
« Reply #5 on: Jul 19th, 2005, 6:13am » |
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Hiya splitmyheadintwo,
I hope things go well with the neuro. It sounds like he is working for that solution to your pain.
Regardless of what your insurance company does with the O2 get a script for it and a mask. Check out the prices w/out insurance. Rent a tank for a month. If it doesn't work then have them pick it up. Out of pocket expenses would be maybe 60-120 bucks/mo without insurance. It worked so well for me that I bought a tank outright and will have it standing by 365 days a year. That's a big comfort to me....reminds me of my blue security blanket as a kid. 
I have three cracked vertabrae/compressed discs and walked like an old man with a shuffle step. The chiro did help me out.
Have a good one and I hope you are PF. Knock that devil on it's butt!
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Bob_Johnson
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Re: Hello from a newcomer
« Reply #6 on: Jul 19th, 2005, 11:56am » |
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This is an excellent statement of the current state of art in treatment written by one of the better headache docs in the U.S.
Suggest you print it out your information and as a tool to discuss treatment options with your docs.
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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Bob Johnson
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