I thought I would give an update !
We dosed with 15 for the first time and the outcome was interesting. Denise had no nausea and very minor color effects went to bed and slept through the night. The only negative was she complained her legs felt like she climbed mount everest the next day. The following 2 days were pain free  :D  She had one last night and was able to abort with red bull ? Taday she has had one and we will see. We plan to dose again in 5 days from first dose . I cant believe the red bull is helping !!!!!!!!!!! Last nights attack was a whopper and within 15 min was gone!  

Maybe bump it up to 20 if you feel comfortable with that.
I use 25 to 35 monthly. Or at the first sign of the shadow.No side effects.
Keep up the good work ;)
thebb

Thanks for the update. I'm glad that the red bull helped; I rely on energy drinks myself.

Sanna

It sounds like things are going well.  :)

If her legs hurt the next day, I wouldn't recommend using more than 20 very often. Should she need to dose again, it would probably be fine, but not if she has to dose every 5 days.

If it were me, I might hit it hard with the next dose (like 20 - 30) and then try to use much smaller subsequent doses. If subsequent doses are needed to break this cycle.

Dosing works well as a preventative, so maybe I'd dose a few weeks before I expect a cycle.

All the best with it, nani

Well we have treated 3 times with 5 days between doses. Treated with 30 on second and third doses. Currently it looks like no effect on cycle :'( We will try next cycle sooner to see if we have better results. Looks like Imitrex is our only relief and have to fight the insurance and doctors to prescibe and pay for more that 2 injections every 10 days.  >:( Good luck to you all I hope we all find relief!

Denise wrote on Jul 14^th, 2008 at 7:48pm:

Looks like Imitrex is our only relief and have to fight the insurance and doctors to prescibe and pay for more that 2 injections every 10 days.

Was she using Imitrex between dosing? If she was, then it has likely interfered with the efficacy of the seeds.

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Denise,
and everyone else...,
I, luckily, have a great primary doc that understands the pain of CH and how insurance companies work.  What they did for me, and hope yours may be able to do for you too, is prescribe different triptans in my time of need.  Of course, there has to be the understanding that you CAN NOT use the differing triptan drugs in the same 24 hour period.  The insurance company's put absurd limits on our drugs of choice, but only each individual drug.  We were able to work around the limits by trying different drugs.  When insurance refused to pay for Zomig NS, we switched to Imitrex NS, and when that was no longer covered we switched to Maxalt.  This also gave me an opportunity to find out which drug worked the best for me, and this may be the approach you want to discuss with your doc.  

Now lets be clear, I only use the drug when the beast is on a rampage and O2 and ice are not working for me as they should.  I am now in the process of stockpiling while in a remission so as I won't have to play any games with these jokers the next go around.  Until I am able to find a method of clusterbusting that works for me, this is what helped me fight the beast.  I hope this helps.

Many PF wishes
Thomas

For me seeds work best as a prevent. When involved in an episode I need the big hammer...shrooms. Try the seeds before the onset of an episode, when your already detoxed, and you will be amazed. Dont be discouraged, you only have taken the first step. :)
No 02?
all the best
thebb :)

wrote on Jul 15^th, 2008 at 6:39pm:

For me seeds work best as a prevent. When involved in an episode I need the big hammer...shrooms. Try the seeds before the onset of an episode, when your already detoxed, and you will be amazed. Dont be discouraged, you only have taken the first step. :) No 02? all the best thebb :)

Thanks we will try again next cycle after a detox and Im working on the 02.
Wish I had the big guns !
We really wanted to try the big guns while she was getting hit hard.
I will be prepared next time ! For now triptans is our only relief. We learn something new every cycle . We added red bull this time! Denise went 15 years misdiagnosed ........ We are going to beat the beast eventually!!!!!!!!!!!!! Thanks for all the replys we really appreciate it. Pain free days to you all  Bryan

Bryan, learning more and more is useful tool against the beast. Knowledge is power. I wish Denise a long, long remission. :)

PF days,
Sanna

Denise wrote on Jul 15^th, 2008 at 10:33pm:

Wish I had the big guns ! We really wanted to try the big guns while she was getting hit hard.

Hello Denise,

I assume your reference to the big guns as meaning Medicinal Shrooms.

It's really not that difficult to cultivate one's own Medication, but probably here is not the best place to discuss this.

Why not ask Bob W for an invite along to Cluster Busters, & lets see if we can help.

Be well.

CArl...