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Cluster Headache Help and Support >> Getting to Know Ya >> Another newbie to your site. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1288990215 Message started by fid on Nov 5th, 2010 at 4:50pm |
Title: Another newbie to your site. Post by fid on Nov 5th, 2010 at 4:50pm
Wow, what a great resourse of info you all have provided!!! I've been on this site for 30 min and am amazed by the wealth of information.. I had my first CH at 20 and am now 39. From everything I've read I'm a lucky sufferer. My cycles are usually 2 weeks with 1CH/day, lasting maybe an hour. I had remissions of 3 years each between 20-26. Then a 9 year remission only to have them return at 35. I started looking for info today, because the "beast" as you guys so appropriately put it has returned. I'm on day 5 of what I hope will again be another 2 week cycle. In the past I just hung on for the ride, but now use imitrex with success. My MD has also put me on verapimil, but doesn't seem to hold them off. Because of this site, I'm going to look into O2. And no alcohol for me during cycles, definate trigger. Thanks again and I wish you all pain free days, weeks and hopefully years.
Fid |
Title: Re: Another newbie to your site. Post by Mike NZ on Nov 5th, 2010 at 5:19pm
Hi and welcome. I'm pleased you're finding stuff that is helpful.
If your CH cycles only last two weeks than you could probably just use prednisione as a preventive as your cycles are short enough to avoid issues from the longer term use of steroids. It's possible that the dose of verapamil isn't high enough as we normally need what is considered to be excessive doses for "normal" uses of verapamil. It also can take a week or so for verapamil to become effective, which with your short cycles is half a cycle. I'd certainly look at using oxygen. The ability to skip riding through a CH compared to killing it in minutes is well worth doing. Make sure you read the info on the left. And ask away. When you're reading so much you're bound to have questions. |
Title: Re: Another newbie to your site. Post by Guiseppi on Nov 5th, 2010 at 6:37pm
Welcome to the board! yeah, what he said! A cycle as short as yours might benefit from a short 2 week prednisone burst. Do ask the doc about it.
And oxygen, 32 years of CH here, nothing compares to my 02! I used to take 90 minute rides, now it's stopped in its tracks in 6-8 minutes. Damn near miraculous how fast it works. Glad you found us, hope we can help you. Joe |
Title: Re: Another newbie to your site. Post by DennisM1045 on Nov 5th, 2010 at 6:41pm
Hey Fid! Welcome home. This is YOUR site too.
Funny how reading a few posts can make a newbie feel like he's a "lucky sufferer" ;D Two week cycles are too short for preventatives but Oxygen will be a real game changer for you. While you get that lined up try an energy drink. They work for many. Keep reading. There is no more powerful weapon in this fight than an educated clusterhead ;) -Dennis- |
Title: Re: Another newbie to your site. Post by fid on Nov 13th, 2010 at 7:26am
Thanks for the warm welcome all and the quick advice. Bob, as a healthcare worker I appreciate your evidence based references and links. Gracias for the post. With that said, I'm also a firm believer in ancedotal remedies, do what works for you regardless of printed proof.
Its been about a week since first posting and thanks to this site/recommendations, I've been using O2 for the last few days. It's a CH killer for sure. 5-10 minutes and the pain is gone. My regulator will allow 15-20L/min and it seems like that flowrate is the ticket. I do find that unlike sumatriptan, I will need another dose in 2-3 hrs to keep it at bay, but its better and less costly than administering and buying shots. Plus, no neck tightening cerebral high. Not that there is anything wrong with that. Just not for me. For anyone that is suffering and hasn't tried O2, speak with your MD and get on board! Thanks again. Fid |
Title: Re: Another newbie to your site. Post by Guiseppi on Nov 13th, 2010 at 9:13am
I have found that drinking an energy drink....I prefer sugar free red bull for taste, but any containing caffiene and taurine will work....helps me to push off that "come backer" attack a few more hours.
So glad you've found 02, has certainly made my life a lot easier! ;) Joe |
Title: Re: Another newbie to your site. Post by Kate in Oz on Nov 14th, 2010 at 6:25am
Hey Fid,
So glad to hear that the 02 is working for you!! Like Joe, it has made a huge difference in my life too. Wishin you all the best, Kate |
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