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Cluster Headache Help and Support >> Getting to Know Ya >> Newbie to CH.com not CH
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Message started by Kim Verd on Mar 5th, 2010 at 2:08pm

Title: Newbie to CH.com not CH
Post by Kim Verd on Mar 5th, 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

Title: Re: Newbie to CH.com not CH
Post by vietvet2tours on Mar 5th, 2010 at 2:21pm
Good for you. I like folks that got their shit in one sock.

             Potter

Title: Re: Newbie to CH.com not CH
Post by Skyhawk5 on Mar 5th, 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

Title: Re: Newbie to CH.com not CH
Post by Hickory on Mar 5th, 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

Title: Re: Newbie to CH.com not CH
Post by Kim Verd on Mar 6th, 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

Title: Re: Newbie to CH.com not CH
Post by Guiseppi on Mar 6th, 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

Title: Re: Newbie to CH.com not CH
Post by Kim Verd on Mar 6th, 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

Title: Re: Newbie to CH.com not CH
Post by Lefty on Mar 7th, 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

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