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NiteOwl12

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Hello!
Nov 30^th, 2011 at 12:12am

Hi. My name is Cynthia, I'm 26 and I've lurked here for a while with my past cluster episodes. This is my 3rd or 4th go round with them and finally decided to join. My first time getting these monsters was when I was 20.

Thankfully the past episodes only lasted a week. This time though things have been weirder. Had the usual daily ones that were between 1-2 AM. Yesterday though had one at 6PM when I got home, then at 12AM and 2AM. Can't even say how much that sucked! Then today I had another at around 6. Hoping tonight isn't going to be a repeat of last night.

My lifesaver for the past episodes were Imitrex. This time I finally had access to oxygen and that has been probably a bigger help I'd say.

Anyway, nice to have this site where others understand this. I hate that we have to be here, but it is cool to have a place where people really understand this.

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Hello! Reply #1 - Nov 30^th, 2011 at 8:23am Glad you stuck your head in Cynthia, welcome. Has the doc talked to you about any prevents yet? A med you take daily to cut down the number and intensity of your attacks? Joe
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Martin CH.com Veteran Offline Ready for anything this world can dish! Posts: 101 Ottawa, Ontario Gender:	Re: Hello! Reply #2 - Nov 30^th, 2011 at 11:22am Hi Cynthia, I remember when i first found this place, thinking "Finally, people UNDERSTAND". Since I've joined I keep coming back. Like Joe said, preventatives can be really effective at reducing the frequency and intesity of attacks. There are some really helpul posts and people here. Welcome!
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bejeeber

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Re: Hello!
Reply #3 - Nov 30^th, 2011 at 12:39pm

With episodes that only last a week I can see the advantage of an abortive only approach, since many prevents take a week or more to kick in, let alone acquire. Plus, although I haven't run across any scientific validation of this yet, there are those of us who suspect that prednisone can have the effect of extending an episode, and many of us know how the attacks can return with a vengeance after a prednisone taper.

On the other hand, it can be nice to have some prevents lined up and ready to go, just in case the lousy beast decides to extend his stay!

And the vitamin D3 prevent regimen appears to be good for us regardless, something everyone who isn't on it already could consider starting on today: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

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« Last Edit: Nov 30^th, 2011 at 12:59pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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markca

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Re: Hello!
Reply #4 - Nov 30^th, 2011 at 2:02pm

bejeeber wrote on Nov 30^th, 2011 at 12:39pm:

With episodes that only last a week I can see the advantage of an abortive only approach, since many prevents take a week or more to kick in, let alone acquire. Plus, although I haven't run across any scientific validation of this yet, there are those of us who suspect that prednisone can have the effect of extending an episode, and many of us know how the attacks can return with a vengeance after a prednisone taper.

So true. I totally agree about abortives if the cycle is only a week. But you may find that you react differently with 1 trex per day than with 5 (I know you're using O2 also).

The O2 and imitrex are so effective for me that I do not plan to do a preventitive next cycle. I've used prednisone the last three and I swear once the taper was done, I had more hits per day, for longer, at higher kip.

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Mark

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NiteOwl12

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Re: Hello!
Reply #5 - Nov 30^th, 2011 at 8:51pm

Haven't really wanted a preventative yet, since there seems to be pain free periods for a year or more. I had been on Topamax, for a different reason (partial seizures), and noticed that I never had migraines or headaches with it. Come to think of it, I didn't have any clusters then either. Unfortunately it worsened my gastroparesis which made me vomit very frequently. Tried Inderal before for the migraines, but that made me so sluggish.

For now I'm using the O2 at home and the imitrex when I'm away or when the pain isn't relieved with the O2. Out of the imitrex now though, won't be covered by insurance for another 5 days. Sad

I really need to get a better O2 regulator and a big tank though. The way I have access to it right now is by a family member that routinely uses it, and it only goes to 8. It is so much better than nothing though! And I've come up with a way to rig it that I'm going to try out tonight. Attach the tubing to a large bag and let it fill then start taking breaths from it. Kind of like a giant non-rebreather. If they continue for more than the usual week I'm going to go for the better options though.

That and I'm heading out for some melatonin tonight to see if that helps. I've been so exhausted from these things, especially since they like to visit in the middle of the night!

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bejeeber

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Re: Hello!
Reply #6 - Nov 30^th, 2011 at 9:06pm

That bag idea is commonly referred to as a 'reservoir bag' and it sounds like a good idea indeed to me. Cool

I know I've used a giant kitchen trash sized bag for my O2 reservoir.

What type of imitrex have you been prescribed? If it's the injections, this tip on how to stretch your doses is a really good one (if you haven't seen it yet):

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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