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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> So Wierd this time around!!
        
(Message started by: stevea on Dec 11^th, 2005, 5:17pm)

Title: So Wierd this time around!!
Post by stevea on Dec 11^th, 2005, 5:17pm

So as some know, I am back into a cycle after over a ten year reprieve. But they are so different this time. Before, they would last up to four hours. Typical sharp attack, about an hour of intense waves, and then two hours or so of lingering aftershocks. This time, it is a pretty sudden attack, a peak, and then an IMMEDIATE shut off. Like literally a switch has been thrown. I just finished one. It was amazing. It started at about 4:00pm. I took my two ergotamine tablets. And then it hit with a vengeance. Took another one. Nothing. Got worse. This time I thought for sure the med's weren't working. Jumped into a hot shower. Got out feeling even worse. Then I sat in a chair, the knee bouncing up and down the hand squeezing the head. My partner came in and asked if I needed anything...and it turned off. Nothing. No residual. I couldn't believe it. Then I started crying like a girl (sorry to the ladies, just a saying). I was so happy. Anyone else have them end like this?

Title: Hi SteveaRe: So Wierd this time around!!
Post by jon019 on Dec 11^th, 2005, 6:05pm

Hi Stevea,

Yup. 24 years of this crap and a several years ago they got real weird. Hits came with no warning(like a toggle switch) went to kip 10 in seconds and gone in 1-2 minutes. Several times a day. Scary, thought I was having a stroke. Incredible pain and fear.

That lasted 2-3 cycles and then back to "normal" and then constant for the last year. That got me to the neuro
who put me on topomax and verapamil. Pain free (with lots of shadows) since 9/14 and counting.

It's all weird, just be prepared for the consistency of inconsistency.

Regards

Jon

Title: Re: So Wierd this time around!!
Post by Kris_in_SJ on Dec 11^th, 2005, 8:35pm

Hi Steve,

First, I have to say "Way to Go!" for a 10 year reprieve.

Second, I guess I would say that nothing about this horrible syndrome surprises me anymore.

Then, I would ask if you had tried "riding one out" to see how long it really lasts without med intervention. If they're really as brief as you think, no pill is going to help - it simply takes too long for a pill to go to work - is it worth the cost?

Medical treatments for clusters have changed a whole lot from 10 years ago. I know of very few people who take Ergotomine for clusters anymore. Perhaps you've seen this link - if not it might be of interest. It truly was a lifesaver for me last cycle (5 years after the previous one). If your clusters peak fast, you need a med that peaks fast.

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

Hugs and PF Wishes,

Kris

Title: Re: So Wierd this time around!!
Post by zwibbs/Scott on Dec 12^th, 2005, 1:59am

My present cycle ( 3 years without one) has lasted going on 8 weeks now. I am 51 and while they are still bad, they were much worse when I was in my thirties. I know that they change and vary, and I have also learned that it happens that way. My neurologist said it still is a cluster and he will search until we break the cycle.Good luck to you and hopefully you'll start another 10 years of tranquility.

Title: Re: So Wierd this time around!!
Post by MJ on Dec 12^th, 2005, 2:36am

Steve

For most of my history of CH the attacks have allmost allways come to full intensity in less than 5 minutes for an hour or two then like you said they just shut off and its over. Untill the next hour comes.

There were many years that the meds I took, didnt allow a shutoff like that..let alone a smile when it was over after looking around and wondering where in the hell did it go. Its like stepping from hell to the edge of heaven. It is amazing.
And that is one of the reasons I used no meds for the last many years. Its all about recovery.

This time a new treatment a new deal.

Title: Re: So Wierd this time around!!
Post by BarbaraD on Dec 12^th, 2005, 7:03am

Have you tried the DHE-45 IV treatments? This used to stop my cycle when I was episodic. I had to go in the hospital for the IV treatments every 8 hours, but after about 3 days or so it would end the cycle. If you're already taking the ergotomines, it might help.

Hugs BD