Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Tricky beast???
        
(Message started by: kimmeesue on Jun 2^nd, 2005, 12:03pm)

Title: Tricky beast???
Post by kimmeesue on Jun 2^nd, 2005, 12:03pm

I have been completely off Topamax for two weeks and have not experienced so much as a shadow. This after being chronic for 2 years without more than a few totally painfree hours. Never one to look a gift horse in the mouth I have been in heaven (not to mention a little denial).
Woke up this morning with a familiar throb behind my right eye. Went back to sleep and two hours later woke with a drippy right side, but no pain.
Is it likely that going off the topamax would have changed everything? COuld I go back to episodic or did I somehow just get a reprieve...the beast was on vacation?
I am not going back on topamax no way no how and am looking into kudzu...can't find it locally so my son is looking in Kansas City. Do I have to wait for the beast to come back before starting it?
Any thoughts, advice, etc. appreciated.
Kim

Title: Re: Tricky beast???
Post by seasonalboomer on Jun 2^nd, 2005, 1:02pm

Re: kudzu

I'm not sure how to best describe how Kudzu seems to be being used. It is not an abortive, but it's really not a preventative as its use seems to be being focused on people "in-cycle" to end their cycle. Would that be a preventative (a little help?)?

Anyway Kim, Nani has the longest term "Kudzu-use" as a chronic taking Kudzu for a long period, truly as a long tem preventative. The majority of the posters on the survey that used it seem to have been describing cutting their cycle short, but not aborted a particular hit --- and then stopped after the cycle was seemingly gone.

Title: Re: Tricky beast???
Post by kimmeesue on Jun 2^nd, 2005, 3:17pm

Guess this is just a confirmation that we should never get too comfortable.
As the day progresses so does the beast. The pain/pressure are back, drippy nose, now I sit here waiting...I hate this part...ok, I hate the whole thing, but sometimes wish I would just get the hit and get it over with instead of having it just escalate a little at a time. Since none of the abortives work for me anymore I have no choice but to wait. The upside is a clean house and spoiled schnauzer....gotta stay busy

Title: Re: Tricky beast???
Post by nani on Jun 2^nd, 2005, 7:36pm

Aw, sorry kim. :( Since you're not taking any other meds, this would be the optimal situation for trying kudzu. It seems that for chronics, it will have to be a long term prevent. Read everything you can about it first. Print out this info and bring it to your dr.
http://med-owl.com/clusterheadaches/tiki-index.php?page=Kudzu

I'm not sure you have to wait for full blown CHs to start. If you think it's coming back, start as soon as you and your dr feel OK with it. Good luck and keep us posted, OK?
PF wishes, nani

Title: Re: Tricky beast???
Post by Sandy_C on Jun 3^rd, 2005, 1:50pm

Reading Nani's posts from the beginning of the Kudzu string, I took during my cycle, and it did help, not stop the Ch. My cycle has ended now, but I still have a now and then, kinda, sorta Ch. I'm still taking the kudzu, will continue taking the kudzu, just because I truly believe that it is helping me. So, in my opinion, for what it's worth, start taking it now and keep on going. :)

Title: Re: Tricky beast???
Post by kimmeesue on Jun 8^th, 2005, 3:06pm

Have now been off the topamax over three weeks. Had one major hit and nothing since. Am waiting on Kudzu and hoping this reprieve continues. See my neuro next month, can't wait to tell him the good news...I think he thought I was a hopeless case :P
Thanks for all the support, everyone.
Kim