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        New Message Board Archives >> Medications, Treatments, Therapies 2003 >> How many here... (also posted on gen)
        
(Message started by: oringkid on May 25^th, 2003, 10:13pm)

Title: How many here... (also posted on gen)
Post by oringkid on May 25^th, 2003, 10:13pm

have gone with out meds for 1 year or longer and what is your opinion on the difference between Ch with meds and without?

Curious, Sherry (I also posted this on the general board)

Title: Re: How many here... (also posted on gen)
Post by forgetfulnot on May 26^th, 2003, 1:27am

It is Sherry, right? Anyone that can deal with cluster headache on a regular basis without any meds should be shot and removed from normal society. You are a freak and we can not allow the government to discover you while you are alive.

But if you can pull it off, more power to ya

I must say that after 19 years of this fun I just don’t get it

And that is all I have to say about this at this time.

Lee

Title: Re: How many here... (also posted on gen)
Post by Snappy on May 26^th, 2003, 4:50am

I have to agree with forgetfulnot. Clusters without meds ??? ;D ;D ;D ;D rotfwl. It brings tears to my eye just thinking about it.

Title: Re: How many here... (also posted on gen)
Post by oringkid on May 26^th, 2003, 7:00am

Gee Lee, thanks for that input man.

Sherry (the freak)

Title: Re: How many here... (also posted on gen)
Post by brain_cramps on May 26^th, 2003, 7:44am

(Copied from the General board)

Good question, Sherry

I am episodic and have been med-free for more than 5 years. Since going med-free, my cycles have gradually got shorter, going from 6-8 weeks to under 3 weeks for my last cycle.

Originally, this was because of problems with our gov't healthcare system (Alberta, Canada). When I realized that each subsequent cycle was getting shorter, I decided to keep fighting CH without meds.

I hope to have o2 before my next cycle. Other than that, I plan to continue going med-free hoping that the cycles continue to get shorter. (If they don't, I'll probably try meds again.)

It is definitely not easy, even with short cycles and I realize that this route is not for everybody.

Apparently I should be shot and removed from society, ::)
grant 8)

Title: Re: How many here... (also posted on gen)
Post by andy on May 26^th, 2003, 11:45am

The only meds i have ever taken for my CH have been prednisone 2 times and they have broken the cycle each time after the taper. I dont like the idea of being medicated for long periods of time. I have taken many OTC meds that did not seem to work very well for me. I have never taken a preventitive and the only abortives ive tried is imitrex inj. that worked very fast. I use oxygen, that almost always works within 10 minutes if i can get to it soon enough. This cycle is over now, I have been PF for over 2 weeks. I drank some alcohol in the last 2 days to test the beast and i kicked its ass!!! This cycle was a short one, it only lasted 5 weeks with less than 10 kip 10s. I am lucky i guess to have such a short cycle. I wouldnt have been able to cope without this message board. Thanks to everyone that contributes to this great place. and i hope everyone has a cycle as short as mine, or shorter!! Im not going anywhere, Ill still be around to support others. This is a good thread Sherry, thanks for asking. PFDAN .............andy

Title: Re: How many here... (also posted on gen)
Post by Margi on May 26^th, 2003, 12:17pm

Hey, Sherry - good subject.

Here's the other end of the spectrum for you. Mike has been clustering (episodically) for 25 years or so. This last cycle, which was November to May, 2002 was his FIRST medicated cycle ever. Yes, in the past he'd been given the standard anti-biotics, narcotics, sinus meds, etc. etc. but no real "cluster meds". (Imitrex pills for one cycle that worked for about 4 attacks before he built immunity.)

He tried oxygen in 1998 for the first time and did find relief from that with no real side effects (other than attack aborts!)

Now...this last cycle? It sucked BAD. At about 2 months in, we finally got in to see a cluster knowledgable neuro for the first time ever. Pred burst, imitrex inhalers to start. Major side effects, no real relief. Then 2 months later: verapmil and lithium combo. Cycle FINALLY ended around the six month mark. His longest cycle EVER - he used to average maximum 3 months!

Our take on med-free versus med-full? For Mike, we think it prolonged the duration of the cycle. Yes, made the individual attacks a little more manageable but...he just wasn't real happy about dancing that LONG.

So hard to generalize like this, I know and I should point out that, prior to this last horrific cycle, he did enjoy his longest remission ever as well - almost 3 years. Did the shrooms keep him in remission that long? Did he build immunity to them and that's why he went back into cycle in November? (yes, he dosed with shrooms completely med free) Was it the meds he started in January that prolonged his cycle or was it the aging process affecting cycle pattern? We dunno.
::)
I doubt, mind you, I'll be able to convince him to go the med route again. Probably just imitrex and O2 - our old standby aborters.