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.

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

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!

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: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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.

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.  :(

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!

That bag idea is commonly referred to as a 'reservoir bag' and it sounds like a good idea indeed to me.  8-)

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):

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