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Topic: Introducing myself - it's about time! (Read 351 times) |
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merchant
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Introducing myself - it's about time!
« on: Sep 6th, 2007, 5:33am » |
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Hello,
I live in the Austin, Texas area (Pflugerville, actually). I've been married for four years, but been with my wife for about 9 years.
I was diagnosed with cluster headaches when I was 8. I'm 30 now, and it seems like it only gets tougher each year. I don't talk about the level of pain with pretty much anybody b/c I don't want to "burden" them, but I finally decided to seek out a site like this to share experiences. Hopefully I can find more hope, while also helping others with everything I've gone through.
More will come, but for now I will reveal (shocker!), that I'm extremely skilled and receive nothing but praise wherever I work, but I ultimately run into the clusters and end up missing time at work. If you're not at a job for a year, you don't qualify for help with your health... but if you suffer nearly daily and end up missing a couple days each month, you run out of time and can't even make it to the year benchmark. That, by far, is what my wife and I struggle with the most.
My dream is to find somebody in the Austin area who wants somebody that does the work of two people, but may miss time (backed up by plenty of doctor docs, of course).
Okay, I'll stop there and look forward to meeting everybody and sharing more!
- merchant 
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| « Last Edit: Sep 6th, 2007, 5:50am by merchant » |
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DennisM1045
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Re: Introducing myself - it's about time!
« Reply #1 on: Sep 6th, 2007, 7:35am » |
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Hey Merchant,
Welcome. From the sound of it it's about time you found us 
You sing an all too familiar song my friend. Trying to find that perfect job is difficult. I'm in high tech so it's easier for me. I can work from home when things get rough.
What works best for me is 100% O2 at 15lpm + Rock Star (energy drink). If I hit the beast fast enough he goes away. Imitrex injections can knock the beast out cold well into a hit for most of us.
I have all the usual questions about what you've tried and what works for. So tell us something about your med history and maybe we can suggest somethings that can help.
Anyway, I look forward to hearing more about you. Welcome to your new home on the Internet.
-Dennis-
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merchant
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Re: Introducing myself - it's about time!
« Reply #2 on: Sep 6th, 2007, 7:57am » |
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Hi Dennis
Here's a brief rundown of everything I've tried. As you say, I can tell that most people here have tried all the same things with varied success. 
preventatives:
neurontin (about 7 years ago, and just started it again one month ago), verapamil, topamax, amitriptyline, trazadone, inderal, depakote... probably more that aren't coming to mind.
other:
electrotherapy, accupuncture, magnets (pretty much everything but a chiropractor)
abortives:
all triptans (injections had bad effects and not much success), disolvents like maxalt mlt worked great but wore off, vicodin, midrin (duradrin/migrazone), cafergot, naproxin, reglan... right now it's mostly triptans/imitrex and vicodin (though I hate taking this more and more b/c the bad is beginning to outweigh the good... just too nauseating)
strange things that seem to work:
- salt (heavy salt seems to offer a surge of healthiness, but docs dismiss it)
- cold (whether it's the weather or sticking your head in a freezer, like those old-school freezer sections the grocery stores used to have... where they were flat and table like, before it moved to all standing glass freezers, and you could stick your head over the vent and breathe that cold air in your nostrils... yeah, strange... but that kind of effect helps... just anything cold)
Yes... I definitely came here too late. But I'm here now I told my wife this morning before she went to work about it and she was extremely excited.
Oh, in addition to the docs/specialists, I've also spent extensive time at the Scott & White Clinic in Temple, Tx, as well as the Texas Headache Institute and Pain Management Center in San Antonio. Pretty much everybody concludes eventually that I should wear a permanent pain patch, but for some reason I'fve turned that down repeatedly. It just doesn't feel like the answer to me  Maybe I'm wrong to think that.
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| « Last Edit: Sep 6th, 2007, 7:59am by merchant » |
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vietvet2tours
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Re: Introducing myself - it's about time!
« Reply #3 on: Sep 6th, 2007, 9:40am » |
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You get some oxygen.
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Kill em all let God sort em out
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LeLimey
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Re: Introducing myself - it's about time!
« Reply #4 on: Sep 6th, 2007, 11:45am » |
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Hi Merchant
I'm sorry you have had to find us but Im very glad that you have. Lets see what we can offer as suggestions to help you.
I see you've already mentioned cold, that is a really good tool for me too although some prefer heat (trigger for me) Sticking your head next to the vents with the air con set to stun in your car works as well as sticking your head in the fridge or an ice pack on the back of your neck and one on the affected side of your head too.
We have a standing joke here that frozen peas really ARE our best friends!
As far as preventatives go sometimes mixing them works. Several people here are on a verapamil/lithium combo for instance with great effect. Sometimes its just that you need a higher dose. People here on verap for instance range from as little as 360mg to 960mg per day for instance. Its all personal to what works for you which is why its so difficult to treat, we all have our ultimate one-of-a-kind "designer" headache.
Have you ever tried Zyprexa (Olanzapine) or even melatonin? Both have quite a following here and are worth doing searches on.
Have you ever tried O2 as Viet suggested? That is quite simply my favourite abortive of all time. I can abort a hit using high flow rate o2 at 15lpm with a clustermasx in as little as seven minutes. Wonderful stuff - but only if used correctly. We can give you all the help and advice you need on that subject though and help you iron out any wrinkles until you are an O2 adept!
Coffee and caffeine based energy drinks such as red bull or cheap equivalents are really good too. Caffeine is a vaso constrictor and so works in the same way as triptans and Oxygen. To get the best effect from any of these you need to wallop the hit at first twinge though as the longer you leave it the harder it is to abort.
I'm going to stop here rather than bombard you any more but if you need any help or have questions we will happily help and support you all we can.
Regards
Helen
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barry_sword
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Re: Introducing myself - it's about time!
« Reply #5 on: Sep 6th, 2007, 12:38pm » |
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Hi Merchant. Glad you found us. Do your best to get the o2. I use it and it is a godsend.
Barry
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merchant
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Re: Introducing myself - it's about time!
« Reply #6 on: Sep 6th, 2007, 5:19pm » |
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Thank you all so much for the ideas already. I talked about O2 only once in the past, and b/c of my history of asthma the doc said no.
http://www.ouch-us.org/medications/oxygen/O2_CH_Abortive_v2r7_Final.pdf
I was just reading through this and noticed that asthma shouldn't rule it out, so I'll talk about it with my current doc first time I see her
I've also been to the emergency room for reaching a level of pain that completely disrupted my motor skills and ability to talk. Basically convulsing, quasi-aware but unable to communicate. It lasted about 3 hours before I regained function and thinking.
This repeated itself only twice... so it's happened to that severity about 3 times in 9 years. Not too bad. It's scary though when I can feel myself headed in that direction, not knowing if I'll get there 100% or 50%... usually I can cut it off somehow.
I also have taken different sleep aids like Ambien over time... not very successful though.
I haven't tried the energy drinks, but have done the same thing with drinks like Vault (for some reason, that seemed like a compromise). My wife jokes against energy drinks, but this info will change that, I'm sure.
I have tried melatonin as well, to answer the question above I've also tried several of these in combos. The longest "success" I've ever had was maybe 3 months... then the treatment seemed useless again.
Thanks again
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Rosybabe
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Re: Introducing myself - it's about time!
« Reply #7 on: Sep 6th, 2007, 8:41pm » |
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Hi merchant!
welcome aboard!!
I am in Houston, so whenever you come by, PM me and we can meet.
Please, please get the Oxygen!!!
Have you check the clusterbusters??
They will be having a convention in Austin, this October. It will be a great opportunity for you to learn about alternative medicines.
I personally don't use them but if my conventional meds stop working it is always good to know there is something else out there that might work.
I am episodic, a spring kind of girl and right now I am pain free!
Wishing you lots and lots of pain free time!!!
Rosy.
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merchant
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Re: Introducing myself - it's about time!
« Reply #8 on: Sep 7th, 2007, 3:30pm » |
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on Sep 6th, 2007, 8:41pm, Rosybabe wrote:
I am episodic, a spring kind of girl and right now I am pain free!
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Yeah! Those are my favorite posts... I love hearing people are pain free I have friends/family who will occasionally say, "well, if it makes you feel any better, I kinda have a headache right now too." Um... NO! I don't want MORE people hurting! lol Let's all just feel great
I'll look up that Austin Convention! It sounds great! Like you said, even if you don't walk out with something, it's always great to know there are more options
I left a message for my doc about the O2... hopefully can see her sooner than later and get her thoughts on it.
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Jonny
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Re: Introducing myself - it's about time!
« Reply #9 on: Sep 8th, 2007, 2:02pm » |
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You say you have CH, but your sig at the bottom of all your posts says this:
Quote:| I started doing it after losing my job to migraines! |
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Which is it?
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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vietvet2tours
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Re: Introducing myself - it's about time!
« Reply #10 on: Sep 8th, 2007, 7:03pm » |
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on Sep 8th, 2007, 2:02pm, Jonny wrote:You say you have CH, but your sig at the bottom of all your posts says this:
Which is it?
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If you are just thinking bout gettin oxygen you might just have a bad headache.
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Kill em all let God sort em out
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