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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Looking for next step advice!
        
(Message started by: birdman on Nov 8^th, 2007, 9:05am)

Title: Looking for next step advice!
Post by birdman on Nov 8^th, 2007, 9:05am

Okay, quick summary. Started getting shadows and took 35 rc seeds on Oct16th. Next day it was like I was at the peak of my cycle, every four hours. Used redbull and tried dosing again 5 days later and so on. Nothing helped. Finally caved and started a pred taper on Oct 26th and depakote. No relief! Started using melatonin about one week ago and have had some breaks. Seems the nights are worst for me. Pred taper is almost over and hits are starting to increase in intensity. Redbull, o2, exced mig sometimes help but have needed the trex. Also think I am battling a sinus infect.
Should I detox and hit with seeds again or continue with nuero's meds? I have appt today as a follow up and want to be prepared for what I want to do. Any suggestions welcome!
Tim [smiley=huh.gif]

Title: Re: Looking for next step advice!
Post by slacker032 on Nov 8^th, 2007, 9:43am

I've never been a fan of the meds so I would detox and try dosing with the RC seeds again. Have you thought about upping that dose? I've had pretty good success with 50-60 seeds.

Title: Re: Looking for next step advice!
Post by billyjoe on Nov 8^th, 2007, 3:30pm

For me, the HBW seeds pack more of a punch and seem to be working better. Not sure if I got a weak batch of RC seeds or not.

On the other hand, while the seeds help, they may be less effective when you are in full cycle.

Good luck!

Title: Re: Looking for next step advice!
Post by birdman on Nov 8^th, 2007, 5:29pm

Well I saw my nuero for over two hours, very thorough physical and conversational exam. Actually had two doctors there at one point and they think it may have "morphed" into PH (paroxsymal hemicrannia sp?). I am going to try indocin to see if it helps. Apparently PH responds very well to it so we shall see. They decided the depakote is not working so I am off that. Let's hope for the best! If it doesn't work I am going back to the RC seeds or giving kudzu a try.
Tim

Title: Re: Looking for next step advice!
Post by nani on Nov 8^th, 2007, 5:34pm

Hang in there, sweetie.
:-*
hugs, nani

Title: Re: Looking for next step advice!
Post by thebbz on Nov 8^th, 2007, 8:50pm

Hope the indo works for ya.
all the best
thebb

Title: Re: Looking for next step advice!
Post by birdman on Nov 10^th, 2007, 12:04pm

Well, so far so good! I have been pf during the day since starting the indomethacin. Waking at night but I think I am battling a sinus infection and laying down flairs it up. As soon as I sit up, it passes quickly. So I am hoping the indo is doing the trick. This is day 2 of regular living, not even feeling shadows! Let's hope this lasts for a while.
Tim

Title: Re: Looking for next step advice!
Post by billyjoe on Nov 10^th, 2007, 10:11pm

Great news Tim! Hope it lasts.

I had not heard of paroxsymal hemicrannia before and I needed to read the description a couple of times to notice the difference with CH. Correct me if I'm wrong but it sounds like the frequency and duration are the main differences, besides the treatment?

I guess the good news is it is very treatable. Keep an eye out for the side effects, but I'm real happy your finding relief.

Bill

Title: Re: Looking for next step advice!
Post by birdman on Nov 11^th, 2007, 12:04pm

Sounds right Billyjoe! I noticed that the pain had shifted toward the back of my head more often then the temple and eye. Always felt like my neck needed to crack or stretch. Was more frequent then my usual CH and not as time oriented. When I am CH it is same times every day. This was all different times throughout the day. I am concerned that I may have both, if that is possible. Didin't think to ask at the time I was there but will ask at my follow up. Wouldn't that be a kick in the ass!
Tim

Title: Re: Looking for next step advice!
Post by birdman on Nov 13^th, 2007, 8:35am

Well I hate to jinx myself but I am still PF since starting the indocin/indomethacin. Still battling a sinus infection but antibiotics should kick in soon. Only side effect so far is stomach related. Need to stay near a bathroom. I'll take that over a headache any day. I will keep you posted.
Tim