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Newbie Hello (Read 742 times)
saltytuna1
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Tustin,CA
Gender: male
Newbie Hello
Sep 6th, 2012 at 5:32pm
 
Hi Everyone,

I'm Steve from Tustin, Ca. I'm a 55 year old male that was diagnosed with CH when I was in my mid twenties. At the time my health plan allowed me to see any Physician I preferred (80/20 plan) and I sought a Neurologist who prescribed Cafergot. The Cafergot helped to lower the pain index but did nothing for the frequency of the attacks. By the time my next cycle came around (approx. two years) I was with an HMO plan. By the time I saw my primary DR. and waited for a referral my CH were gone. Same thing happened next cycle and my Primary physician had his doubts about me really having CH as that's a "very complicated Diagnosis". Well frustration has since kept me from  seeking any medical solution to the CH. I started a cycle of CH again on 8/19 and decided to look for any web information. I just found this site and all I can say is WOW!! I'm not alone with these, and others seem to have problems with their Physicians also. A typical cycle for me occurs about every two years and generally lasts about six to eight weeks with anywhere from two to six hits a day. I always felt fortunate that my employer recognized my pain severity and would let me deal with it appropriately. I cannot imagine trying to deal with your job in a professional manner when an attack occurs. After reading posts on this site I feel blessed that mine are as infrequent as they are. During my CH cycle two years ago a friend told me about O2 for Migrains. Being that I have an Oxy/Acetylene torch in the garage I tried breathing the straight O2 out of the hose without a mask, It did seem to help if used at the very first sign of a hit, but was very impractical to try and carry with me. After some reading on the site I started this morning with the 10,000 i.u. D3 and 3000mg Omega-3 and Calcium Citrate. All I can do at this time is cross my fingers and hope that it works for me as well as it has for most others. I'll keep you informed as to the success of the treatment. Once again THANK YOU to all that have contributed to this site, it's very reassuring to know that your not alone with the demon.

Steve
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Guiseppi
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San Diego to Florida 05-16-2011


Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male
Re: Newbie Hello
Reply #1 - Sep 6th, 2012 at 6:18pm
 
Welcome to the board Steve.  I’ve had CH for 34years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work. You'll find the E-Tanks are quite portable. I used to keep one in my trunk when I was working patrol. Feel beasty knocking, pull over, suck 02 for 10 minutes, and I'm back on patrol again.

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Go to the medications section of this board and read the post " Anti-Inflammatory Regimen and Survey” It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s healthy for you even without CH!

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe
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Skyhawk5
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Ypsilanti, Mi. USA
Gender: male
Re: Newbie Hello
Reply #2 - Sep 7th, 2012 at 2:30am
 
Joe has covered it well. Take what he's said and act on it. The next best step you can take is to buy the best Cluster headahce O2 mask available at the link below. The O2PTI mask is made just for CH. You can use the facemask or the included mouthpiece.

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This is top of the line CH equipment, for the money. The best is an O2 Demand Valve for lots more money. I have 3 of the O2PTI masks and they are worth there weight in gold.

Don
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Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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ttnolan
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beats me


Posts: 247
Scotts Valley, CA
Gender: male
Re: Newbie Hello
Reply #3 - Sep 7th, 2012 at 2:59am
 
Ya... get the O2ptimask. If you think you got results suck'n outa da hose, wait till you get your hands on this!
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saltytuna1
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Tustin,CA
Gender: male
Re: Newbie Hello
Reply #4 - Sep 7th, 2012 at 3:35pm
 
Thanks for the replies and link. Mask will be ordered.

Steve
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