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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> I'm a new cluster member
        
(Message started by: STEVE-O on Aug 24^th, 2005, 6:34pm)

Title: I'm a new cluster member
Post by STEVE-O on Aug 24^th, 2005, 6:34pm

I've had clusters for about 5 years now.In the beginning they would only come once and a while at night lasting 10 maybe 20 minutes at a time.Now they come everyday at 3:00pm,6:10pm,11:35pm and 2:35am.You can almost set your clock by them.They last between 45minutes to a couple of hours.I can control them with meds but that is what concerns me. Ive taken oxygen, Imitrex,zomig,amerge,cafergot,naproxin,nurotin,verapamil,migrin,and now prednisone.The prednisone works but I know it is very bad for me.The doc is going to cut me off of it and I know the pain is going to come right back.Any suggestions.

Title: Re: I'm a new cluster member
Post by AussieBrian on Aug 24^th, 2005, 7:37pm

My only suggestion is that you've come to exactly the right place seeking suggestions, and you're welcome.

You may also be interested to know that these horrors have also been called 'alarm-clock headaches'.

Look around the board. There's tons of really good info here along with people who know exactly what you're going through. Ask all the questions you like but just remember that we're not doctors. We're sufferers, like you, or supporters of sufferers (they get the hard job).

From here it's just a matter of closing the door, putting on the old seat belt, and enjoying the ride with friends.

Welcome aboard,

Brian.

Title: Re: I'm a new cluster member
Post by marlinsfan on Aug 24^th, 2005, 7:57pm

Hey steve, you mentioned you've taken lots of meds and none worked. You're lumping in the abortives with the preventives and transitional ones together, not all of them work the same.

Read a lot. THe O2 and the triptans are the abortives, the ones you take when you get hit. The prednisone is a transitional used to get you through the time when the preventive has ramped up.

Do not mix the triptans, they can hurt you real bad if you do. Some say they can even kill you.

Did you see the O2 link on the left? Are you using a non-rebreather mask? Are you using at least 8-10 liters per minutes? All those things will play a role on how effective it its.

Since you get some at night like most of us, you may want to try melatonin. When in cycle, I take 9 mg every night 30 mins before bedtime an dit helps me get through the night without hits. Even when the hits come, they are not so bad.

PF wishes.
Jose

Title: Re: I'm a new cluster member
Post by STEVE-O on Aug 26^th, 2005, 1:53pm

Thank you for the welcome.It,s nise to know I,m not alone anymore and better yet you folks know what I,m talking about and don,t think I,m making it up or crazy.

Brian, so they call them alarm-clocks.Makes sense.As for my seatbelt I never take it off. Thanks for the thoughts.

Jose, I don,t have a mask for the O2 but I do set it bettween 8 and 10 liters.I,ll pick one up and see if if helps.What you said about the triptans has me worried.When the clusters come they are the only things that even remotely works to break them.
The only side effect I have really noticed is that if I cut my self I bleed very badly no matter how small the cut. With that tought I have to go.THanks again for the welcome. Talk to you soon.
Steve-o

Title: Re: I'm a new cluster member
Post by seasonalboomer on Aug 26^th, 2005, 2:00pm

on 08/26/05 at 13:53:25, STEVE-O wrote:

Welcome Steve-O (loved you on Jackass) With all that stuff Knoxville put you through it's no wonder you have cluster headaches ;)

Regarding the triptan mixing concern, he's talking about actually taking different triptans at the same time-- so if you've just used different ones at different times, don't sweat it.

Whoel lot of believers here in both the traditional meds and alternative options. Check them all out -- there's threads about them and links for others.

Good luck,

Scott

Title: Re: I'm a new cluster member
Post by Bob_Johnson on Aug 26^th, 2005, 3:22pm

You did not mention doses used on the preventive meds. Especially with Verapamil, most folks take too little and the effective dosage range is quite broad. I hope our doc tried more than one dose before you gave up on it.

Please use his as a tool to guide your discussion with the doc.

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: I'm a new cluster member
Post by burnt-toast on Aug 27^th, 2005, 3:48am

Med. mixes/doses are a constant maintenance routine when dealing with this nightmare. I've found a mix of Lithium Carbonate and Verapamil works best for me but nothing so far has eliminated the headaches.

I am constantly concerned with side effects of long term/higher dosage use of some of these meds. but have found higher dosages to be more effective. You should spend some time going over med. options/dosages in detail with your Doc., do some research and develop a plan/schedule for analyzing the effectiveness of each option/dosage.

There is also information on alternative treatments on the site. You should review these and determine if any are right for you.

Welcome to the Head Bangers Ball, good luck on your journey.

Tom