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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › Newbie to CH.com not CH

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Newbie to CH.com not CH (Read 804 times)

Kim Verd

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Newbie to CH.com not CH
Mar 5^th, 2010 at 2:08pm

Hi, My name is Kim and I have had CH for 20 years. I am very lucky I find, from reading the posts, that I was diagnosed after my first round with all the docs. (my doc, neuro, headache specialist, even dentist..). I found this site because my meds where NOT working anymore. I was taking Maxalt MLT (for a long time ?) I just found out about the O2 being helpful from a co-worker of my husbands this Feb.
This current cycle started 2 weeks ago yesterday. I have not suffered full effects of CH in at least 7 years as the Maxalt worked just fine, even though the med scared me with all the side effects!! So when my meds did not work I was banging my head for 2 hours 3X a night AGAIN OMG KILLER. Thank God I got into my doc after the 2nd night. She is up on CH because she has me as a patient and I am thankful for her, she reads everything!!
She gave me an imitrex shot, which actually took me through the night, and gave me a script for the imitrex nasal spray and 15 lpm of O2. Of course I did not try to get the O2 right away because the imitrex worked, Ha Ha. Well the nasal spray did not work so fast and I was looking to do a second one (and did). The next day I spent 4 hours trying to get what I needed, 15-20 lpm regulator and the tanks big enough to sustain me. I finally found a wonderful place and they brought it to me at 8:30 that night, gave the guy a tip and sent the girl that helped me so much a small gift!!! Well what this is all leading up to is the O2 WORKS!!!!!!! Still tired, but no where near as bad! I am down to 2 a night and pray they are winding away!! I wish I would have found this CH site years ago as the meds are scary.
I currently take 11mg melatonin,1 800mg tab neurontin (took 3 before the melatonin), 16Lpm of O2 for ten min, Imitrex nasal spray (now only when I am out of the house) Sorry this is so long I do not even know if I said all I wanted to. To all having trouble that have not tried the O2, used the right way, as described under Oxygen Info to the left, PLEASE TRY!!!! GREAT SITE!!!!
Quick question does anyone have shadow headaches all the time in-between clusters, 'cuz I do?
Thanks for all your help, EVERYONE, Kim

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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: Newbie to CH.com not CH Reply #1 - Mar 5^th, 2010 at 2:21pm Good for you. I like folks that got their shit in one sock. Potter
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Skyhawk5 CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1320 Ypsilanti, Mi. USA Gender:	Re: Newbie to CH.com not CH Reply #2 - Mar 5^th, 2010 at 3:56pm Just to be sure, do you have a NON-rebreather mask, these have a bag on them? Nasal canula's (nose tubes) and rebreather masks without the bag are not good for CH. I suggest the O2pti mask available on this site. It's made just for CH an is the best thing for CH. $28+. Welcome to CH.com, Don
Back to top	Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not. IP Logged

Hickory

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Re: Newbie to CH.com not CH
Reply #3 - Mar 5^th, 2010 at 10:22pm

The o2 works great as long as you get on it at the first sign of it coming. Hyperventilating helps to get it in your system. I wait to take any meds about 15-20 min. at that point you know whether meds are necessary or not. I hate meds also.

Just out of curiosity were you prescribed maxalt to take daily to prevent cycles?

It seems most people have the shadow follow them through out there cycle. What’s been working for me is, I take 1/2tsp-1tsp powdered ginger mix it in one oz. water, as best you can. Slug it down and chase with more water. It keeps the shadows away for a few hours. (during the day anyway)I hope this helps.
Peace, Hickory

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Kim Verd CH.com Newbie Offline I Love CH.com! Posts: 4	Re: Newbie to CH.com not CH Reply #4 - Mar 6^th, 2010 at 9:41am I am using a re-breather mask supplied by oxygen co. it is a disposable type. I will purchase a good one now that I know the O2 works for me. Thanks I will try the Ginger mix for shadows and I think I will definitely be chugging it! I did not use Maxalt on a daily basis, only used when I felt a CH coming. Thanks
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Guiseppi

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San Diego to Florida 05-16-2011

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Re: Newbie to CH.com not CH
Reply #5 - Mar 6^th, 2010 at 9:59am

That's such great news that oxygen therapy is finally getting main stream!!! 31 years of CH and still use oxygen as my first line abortive. Do spend a little time reading the oxygen info link as small changes in HOW you use it make dramatic differences in the speed of the abort.

The key to oxygen making your headache stop is your lungs getting 100% oxygen, no outside air, no exhaled air. The better job you do of that the faster your headache goes bye bye. That's why the NON re breather mask is critical.

People have several methods of dealing with those damned shadows. I use energy drinks, any containing the combo of caffeine and taurine, Rock Star, Red Bull etc. I'll also use oxygen, and when they get really pesky, excederin migrain. I'm sure your doc has already told you but really limit your use of over the counter pain meds as they can cause rebound attacks and other issues with over use.

So glad you found us, have your hubby check out the supporters board, it's where our spouses and significant others hang out and bitch about what pains we can be on cycle!

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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Kim Verd CH.com Newbie Offline I Love CH.com! Posts: 4	Re: Newbie to CH.com not CH Reply #6 - Mar 6^th, 2010 at 4:22pm Guiseppi, Thanks for the info on how to deal with the shadows, I will try all that you suggested. I used the oxygen info link before I ordered my O2 so I am doing everything it said. I am so thankful for finding this site it has been VERY helpful!!!! Thanks Again
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Lefty CH.com Alumnus Offline Posts: 759 Gender:	Re: Newbie to CH.com not CH Reply #7 - Mar 7^th, 2010 at 6:23pm Quote: I used the oxygen info link before I ordered my O2 so I am doing everything it said. I am so thankful for finding this site it has been VERY helpful!!!! Thanks Again Happy Daze... Lefty
Back to top	"When money's tight and is hard to get And your horse has also ran, When all you have is a heap of debt A PINT OF PLAIN IS YOUR ONLY MAN." — Flann O'Brien IP Logged

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