Click this link to read a post I like on the clusterheadaches.com message board...

Denise

CH.com Newbie

Offline

I Love CH.com!

Posts: 14

RC Update
Jul 3^rd, 2008 at 3:32pm

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 Cheesy

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!

Back to top

IP Logged

thebbz Ex Member	Re: RC Update Reply #1 - Jul 3^rd, 2008 at 3:39pm 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
Back to top	« Last Edit: Jul 3^rd, 2008 at 3:40pm by N/A » IP Logged

sandie99 CH.com Hall of Famer Offline Wish it, dream it, do it - inspite the pain! Posts: 11975 Finland Gender:	Re: RC Update Reply #2 - Jul 4^th, 2008 at 4:44am Thanks for the update. I'm glad that the red bull helped; I rely on energy drinks myself. Sanna
Back to top	Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or IP Logged

nani

CH.com Alumnus

Offline

Clusterbusters

Posts: 8356
Los Lunas NM USA
Gender: female

Re: RC Update
Reply #3 - Jul 4^th, 2008 at 11:14am

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

Back to top

Here I sit between my brother the mountain and my sister the sea. We three are one in loneliness, and the love that binds us together is deep and strong and strange.~Kahlil Gibran

IP Logged

Denise

CH.com Newbie

Offline

I Love CH.com!

Posts: 14

Re: RC Update
Reply #4 - Jul 14^th, 2008 at 7:48pm

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 Cry

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. Angry

Good luck to you all I hope we all find relief!

Back to top

IP Logged

nani

CH.com Alumnus

Offline

Clusterbusters

Posts: 8356
Los Lunas NM USA
Gender: female

Re: RC Update
Reply #5 - Jul 15^th, 2008 at 12:11am

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.

If you haven't already done so, please read this:
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Back to top

Here I sit between my brother the mountain and my sister the sea. We three are one in loneliness, and the love that binds us together is deep and strong and strange.~Kahlil Gibran

IP Logged

icedragon

Ex Member

Re: RC Update
Reply #6 - Jul 15^th, 2008 at 3:43pm

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

Back to top

IP Logged

thebbz Ex Member	Re: RC Update Reply #7 - 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
Back to top	IP Logged

Denise

CH.com Newbie

Offline

I Love CH.com!

Posts: 14

Re: RC Update
Reply #8 - Jul 15^th, 2008 at 10:33pm

Quote:

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

Back to top

IP Logged

sandie99 CH.com Hall of Famer Offline Wish it, dream it, do it - inspite the pain! Posts: 11975 Finland Gender:	Re: RC Update Reply #9 - Jul 16^th, 2008 at 8:38am Bryan, learning more and more is useful tool against the beast. Knowledge is power. I wish Denise a long, long remission. PF days, Sanna
Back to top	Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or IP Logged

CArl

Ex Member

Re: RC Update
Reply #10 - Jul 17^th, 2008 at 12:07pm

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...

Back to top

IP Logged

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!