My husband is episodic, and goes through a cycle every 1-1/2 to 2 years. Thanks to this board, we are now set up with a couple of tanks of O2 in the closet and a stash of Imitrex in the cupboard so we know we are ready when it hits. He's been in cycle for a month and a half now, but this is the first time I don't feel totally helpless, sick with worry, and out of control. I am so grateful for this group, we would have never known how to deal with this, and searched for the right doctor without your help. If are the supporter of an episodic clusterhead, this is all new and you are feeling helpless, just keep reading and sharing, and know that knowledge is power and you can beat this...or at least learn to live and deal with it much better for a few months.

Ya, and dont forget to put the coffee on. You guys sound like your kicking the demon around pretty good. I like that. If you need anything though,were all here, and love to kick the demon as well.
all the best
thebb

Supporters ROCK

I do have a question though, if any of you have been through this. We started with Prednisone, which unfortunately didn't do the trick this time, but also Verapamil which knocked it down to one cluster every 2-3 nights for about 3 weeks. The last two weeks however, it decided to ramp it up to 3 times a day. I wonder if he needs to be on a higher dosage of the Verapamil. He is taking 240 mg...do you ever find that more is needed after a few weeks, even if it started out working?

Still doing good and I know we'll kick it again, but hubby is starting to look TIRED.

  240mg of Verap is low some people here dont find relief until they reach 720mg you will have to check with your doctor because there are side affect with higher doses so dont up it until your hubby asks the doc.
   Hope this helps,    Phil

Hi,

I used 400mg of Verapamil last cycle and was very successful with it.  The trick for me was to switch to the regular release formulation and take it three times a day.  I just didn't get the same results with the sustained release.

Also, ramp up and down again slowly.  It really helps with the side effects...

-Dennis-

It's that time again here also.  My husband started getting the headaches again (last time was almost three years ago) when we were on vacation in Vegas in the middle of September.  Unfortunately, I'm not feeling very optimistic.  There don't seem to be any doctors in the area who are familiar with cluster headaches, and my husband isn't finding much relief.  The oxygen (new to us) does help sometimes, but the attacks are getting more and more prevalent with each passing day.  The medicine prescribed is $35/pill and he had been taking 2 per day, but we're SO out of money!  It seems as if this disease could destroy us in a matter of weeks.  I can't watch him suffer any more.  Not only are the clusters destroying him, they are destroying me.  I feel weak - hell, I'm not even the one in pain!  What if this doesn't end?  What if it becomes chronic?  I'm SO tired, and I can't even imagine what my husband is going through.  Any advise?

Hi Squirrel.  Sorry to hear that you and hubby are having a rough go of it. 

Listen to Jackie, that lady really know her stuff.  She had helped me in so many ways. 

One thing I want to add.  Make sure that you are taking some "me" time.  Take a break.  Meet a friend for coffee, take a bubble bath, go for a walk.  Whatever you choose.  We supporters all need a break once in awhile from fighting the war.

Settle in and read, read and read some more.  You will find something that helps.

Hugs,

Jen

Cheapest route to go for abortives is welders 02. Check out the 02 information posted on the meds board. Caffeine and 02 when strapped for cash and you dont need a doc. Get the mask though.
remain calm you will get through this. trust me.
all the best
the bb

Wow - you guys are amazing!  I instantly felt better just seeing a response from a person who has actually experienced this before!  I'm not alone afterall!  Last episode was three years ago, but about two months earlier in the season.  First treatment this year was two ocipital blocks (which insurance didn't cover to a tune of $1500).  We were so disappointed that they didn't work, because the previous doc was sold on them.  Now I read that they really aren't all that successful, but for the 50% that they work for that's GREAT!  He's been on amitriptyline since September, and doc just upped the dosage to 80mg/day.  He's also found some success in Flova.  You probably all know about the troubles with insurance companies not covering these quanities of meds.  On O2 as well - I believe 12.  At first he wasn't on the non-rebreather mask and the amount of O2 was super low.  I'm sure going to have him try the mask that you suggested!  He's had a little relief the past two nights, and we're not sure what to contribute it to.  Recently he's tried the "water x 3" trick on this site, upped his amitriptyline, and is taking melatonin.  Hopefully he's reaching the end of this cycle.  Hubby has blocked himself off emotionally since these started.  It will be a long road rebuilding.  Seriously - THANK YOU for responding and sharing your tips.  I was feeling like the only one out here experiencing this.

Hi Squirrel.

Glad to hear that your doing better.  My hubby tried the Ocipital blocks too and they didn't do a whole lot for him either. 

Once the cycle breaks your hubby will come back emotionally too.  Just give him time.

Hang in there lady and like Jackie said we're always here for you.

Big Hugs 

Jen

jmc1106 wrote on Nov 11^th, 2008 at 11:34am:


I would love to know who charged you for a regulator!

I have paid for over 30 regs to be refitted and gave them to folks here.

What cheap, nickle and dime son of a bitch is trying to make a profit on this site!!!!!!!

I know you dont want to get in the middle of this, but I can express my anger with this happening here.

...............................Jonny

I didn't even catch that when I was reading it Jonny.  That just fries my ass and pisses me off beyond belief