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        Cluster Headache Help and Support >> Cluster Headache Specific >> am i chronic
        
(Message started by: kevmd on Feb 10^th, 2008, 9:22pm)

Title: am i chronic
Post by kevmd on Feb 10^th, 2008, 9:22pm

I don't know whats going on with me. Can you be chronic but pain free due to medication? If you are always on medication, how do you know? Does medication work for some cycles and not others. I feel like if I wasn;t takin something all the time, then I would be chronic. I am experiecing my first real cycle in about 4 years. Taking verap, lithium and just starting a prednisone taper. The pred seems to be helping. About to close out a pain free day. I've been taking verap, lithium or both eveyrday for about 8 years. It scares me that my meds are not working and I am about to enter a world of never ending pain. This sucks. We must have done somehting really bad in a previous life to deserve thsi crap.

Title: Re: am i chronic
Post by DennisM1045 on Feb 10^th, 2008, 9:38pm

Hi Kev,

I'm sorry you're getting nailed again. Four years was a good long break but it's never enough is it.

You're not chronic unless you have a whole year of attacks without more than a break of three consecuitive weeks at any one point.

Did you ever try to come off the meds after your last cycle was over? It's really the only way to know if the cycle has truly ended. If you are chronic its probably not good for your system to be on these meds long term if there is no need.

It could be that your current regime has just stopped working and you need to find the magic bullet for this cycle. It's a very unfortunate fact that the beast changes for a lot of people. What worked last cycle may not work next cycle. But what worked last cycle sure is a good place to start ;)

Don't loose heart, just get with your Doctor and find what'll put the beast to sleep this cycle. Starting with a pred taper is a good way to go.

Do you have Oxygen? It works great for me and a lot of other folks. I back up O2 therapy with Energy Drinks too.

Lastly, we didn't do anything to deserve this hell. It's just life. You've found a way to keep the beast in a bottle for the last four years. Now you need to find something else to put him back in again.

Good luck Kev. We're here for ya.

-Dennis-

Title: Re: am i chronic
Post by kevmd on Feb 10^th, 2008, 9:55pm

hey dennis...thanks for the encouragement. this is the longest I had gone without getting hit real bad, This time is tough because I now have a son,(second kid on the way). I can;t be left home alone with him and that sucks. I don't want him seeing me cry like a baby. I have never tried to o2, just imitrex injections and ice cold showers. I'm sure most of us not chronic fear becoming chronic. I tried the red bull twice. I might have waited too long cause it didn't work. I'm always thinking ahead about what options are left. I'm looking hard into the clusterbuster treament. And I will never rule out surgery. These things really test your will. Oh, I did try about 5 years ago to come off my meds, and started getting heavy shadows pretty quickly. SO I haven't tried coming off again

Title: Re: am i chronic
Post by DennisM1045 on Feb 10^th, 2008, 10:05pm

I would really encourage you to try O2. 15lpm with a non-rebreather mask. I get on it quick when I feel the pain coming and back it up with an energy drink. Otherwise he can sneak back in on me ;)

Using O2 I can abort an attack in 10-15 minutes. I carry an e-tank in my car, have one in my office and a spare out on the porch. I keep a larger m-tank in my bedroom. I never go anywhere without it.

This stuff lets me live my life between the hits.

Kids aren't stupid either. They know what the score is. I used to go nuts trying to hide things from them. Only to find out later that the only one I was fooling was myself. Now they seem to know an attack is coming before I do.

Live your life Kev. Don't let the beast win.

-Dennis-

Title: Re: am i chronic
Post by kevmd on Feb 11^th, 2008, 7:15am

Dennis
I know money isn't an object when trying to deal with this but how much does all that o2 cost you. I know I need an imitrex refill soon and with all the other med, the cost is starting to add up. How long does a tank last you?

Title: Re: am i chronic
Post by chewy on Feb 11^th, 2008, 7:40am

Quote:

You're not chronic unless you have a whole year of attacks without more than a break of three consecuitive weeks at any one point.

Its 30 days.

Title: Re: am i chronic
Post by DennisM1045 on Feb 11^th, 2008, 8:19am

Thanks for the correction Chewy!

I can get three aborts out of an e-tank. There is a link around here somewhere for a calculator that'll tell you. I get around three weeks or so out of an m-tank when I'm in cycle.

As for cost, I have insurance that picks it up. But it is much cheaper than Imitrex injections.

-Dennis-

Title: Re: am i chronic
Post by DennisM1045 on Feb 11^th, 2008, 8:24am

Here is a link to the calculator:

http://www.monroecc.edu/depts/pstc/backup/paraoxca.htm

You want to plug in 15lpm and then divide the number of minutes total by 15 to get the number of aborts you might expect to get for the tank size.

-Dennis-

Title: Re: am i chronic
Post by kevmd on Feb 11^th, 2008, 8:31am

thanks for the info. IF these things kick back up after the pred taper, then I will get an o2 script

Title: Re: am i chronic
Post by Gator on Feb 11^th, 2008, 2:52pm

on 02/11/08 at 08:31:07, kevmd wrote:

thanks for the info. IF these things kick back up after the pred taper, then I will get an o2 script

Don't wait to get the script! For a good percentage of clusterheads, the attacks ramp back up as the pred tapers down.

You can wait to pick up the O2 (I wouldn't), but have the script on hand instead of having to wait for another appointment for the doc to approve O2. A lot of ~~moronic~~ uneducated doctors take some convincing before they will prescribe o2. Get the script and then decide if you want to use it.

Title: Re: am i chronic
Post by kevmd on Feb 11^th, 2008, 5:08pm

good point gator...not to mention finding a supplier and dealing with something new while dealing with the beast. Though I am hoping this is the end. Its only 2 days pain free, but I feel freakin great. Strange effects from the pred but still great.

Title: Re: am i chronic
Post by Loric on Feb 16^th, 2008, 9:04pm

I did pred similarly for a nasty cycle - you will probably crash afterward, so be ready.

I skipped the o2 even though i had the scrip, and apparently that was a bone headed idea. It take a few days for it to be delivered, so act now. Also, with insurance getting Immitrex is usually done on an X-number per X-days routine. So, if you go and get however many they let you have now, and if the oxygen doesn't work, you'll have them.

They don't expire for a while either, so, "break in case of emergency" and with many insurance it's just $15 for 2 little vials of "panic button."

Keep buying them whenever insurance says you can (Doctor having prescribed to infinity) and you'll have a small stockpile should you need it, and not be worried come another bd cycle and paying out of pocket because insurance is fighting with you over dispensing limits.