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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Cluster Busting!
        
(Message started by: cherylc on Jun 28^th, 2007, 12:51am)

Title: Cluster Busting!
Post by cherylc on Jun 28^th, 2007, 12:51am

I have followed this site on and off over the last few years. I usually come looking for advice and ideas when I am in cycle. Because of this site and the people on here I finally got a prescription for oxygen 2 years ago. I still don't know how I coped without it. I have had clusters since I was 16 (25 years ago???). I was diagnosed immediately and have tried numerous medications for prevention and aborting clusters. I gave up on meds and tried to "tough it out". Went back and tried different meds again. It seemed like everything would work for a cycle or two and then I would have to try something different. I even had some success with Kudzu but it didn't last long.

Well to get on with my story...last year I read up on the clusterbusters website and their advice for trying alternatives, so with a bit of difficulty I found some "schrooms". I tried the recipe for mushroom tea near the end of my cycle and wow, my cycle ended. I had another cycle in the fall, tried the tea but gave up because it didn't seem to work.

Well last Monday I woke with a kip 4, dug my O2 tank out of the closet and prepared to fight the beast. That afternon I made up a mild dose of mushroom tea (no "tripping" involved).

I also have my own mixture of supplements that I take as a preventative when I think that the clusters might be sneaking up on me. This was put together from reading many posts on this board:
--9 mg melatonin
--Calcium tablet with Magnesium
--2 night time cold decongestant

So I took my supplements and went to bed. I woke up twice with mild clusters (kip 3), used the O2 and ice and went back to sleep.

I just had mild night time hits all week, then on Friday I had a bad one while shopping with my daughter. I was very discouraged, but came on this site and read some advice about being patient and dosing again after 5 days. So I made up some more tea Sat. afternoon and...(drum roll please) no more clusters, not even at night. I continued with Melatonin and actually slept 8 hours on Sunday night.

It seems too good to be true and I am afraid to hope but I think that this cycle is over. My fingers are crossed!

So now I think that I will be back on the clusterbuster site for advice on growing my own. I am going to be a mushroom farmer!?!?

Well if I can help anyone with advice or encouragement and my recipe for tea let me know.

I can't say it enough...THANK YOU FOR THIS SITE!!!!

CC

Title: Re: Cluster Busting!
Post by Wayne on Jun 28^th, 2007, 4:40am

I truly hope that your cycle is past, I've been following a few threads lately about alternative treatments and yours appears to be the first serious success story.

Title: Re: Cluster Busting!
Post by Chillrmn1 on Jun 28^th, 2007, 6:27am

CC: Happy to hear the treatment is working successfully for you and you're pain free. May it continue for a long time.

Wayne: Many folks enjoy success and are pain free as a result of the ClusterBuster therapy, myself included.

I expect there will be many testimonials posted on this thread by folks experiencing success with the CB treatment.

Again CC, I'm so happy for you and your success.

Sincerely,

Bob

Title: Re: Cluster Busting!
Post by birdman on Jun 28^th, 2007, 8:35am

Been thinking strongly about trying this with my next cycle but afraid to start growing myself. Sounded rather difficult to be honest. Tried to inquire about purchasing but gt nowhere. Will have to revisit the CB site and maybe plan ahead for the fall.
More importantly, congrats on being PF. I hope you continue to get relief!

Title: Re: Cluster Busting!
Post by thebbz on Jun 28^th, 2007, 7:21pm

I don't know about testimony [smiley=huh.gif]
But success rocks! and with no tripans or other poison.
Man that rocks. Whooohooooo
Hope that PF days continue for you.
They really need to get some pharmaceutical suppliers for these.
and a shroom card.
jb
Edit: clusterbusters has a paypal thingy button. They endorse study for treatment. That rocks too.

Title: Re: Cluster Busting!
Post by Chillrmn1 on Jun 29^th, 2007, 5:10am

on 06/28/07 at 19:21:59, thebbz wrote:

I don't know about testimony [smiley=huh.gif]
.

tes·ti·mo·ni·al n.
1. A statement in support of a particular truth, fact, or claim. ;)

Title: Re: Cluster Busting!
Post by Poli on Jun 29^th, 2007, 6:32am

Hi, I'm one of those testiculmonials ;;D , the shrooms treatment is giving me the best results. In 18 months I've had 15 days of mild pain, before my cycle was 4 months every year of terrible pain and lots of medicines for nothing, just for turning me chronic. Now, a monthly dose of tea is good enough to keep the beast at bay, and I don't take anything else.
Saludos
Poli

Title: Re: Cluster Busting!
Post by cherylc on Jun 29^th, 2007, 9:19pm

Hi. Thanks for the encouragement. I am still cluster free. I am so thankful. I wish I could show you my happy dance!

So, I am guessing from the cluster buster website that I have to make sure to dose again in six months, maybe I won't wait that long because Oct. is usually a bad time.
Any advice from those that have had success?

CC

Title: Re: Cluster Busting!
Post by Chillrmn1 on Jun 30^th, 2007, 5:19am

CC,

This is my opinion: The preventative maintenance dosing recommendations on the CB website are a result of many peoples input over the years based on their successful treatment. They are anecdotal and hopefully approval for clinical studies will happen soon.

My personal preference has always been in line with Polis' as far as a monthly regiment is concerned.

My testiculmonial: Prior to trying this treatment, my cycles for the last 10 years and longer would come every 12 to 14 months. Since trying this treatment I have been in remission and pain free now for 26 months. Need I say more?

Take Care.

Title: Re: Cluster Busting!
Post by Pinkfloyd on Jun 30^th, 2007, 3:26pm

on 06/29/07 at 21:19:10, cherylc wrote:

So, I am guessing from the cluster buster website that I have to make sure to dose again in six months, maybe I won't wait that long because Oct. is usually a bad time.
Any advice from those that have had success?
CC

Congrats on your success.

The 6 month preventive dosing schedule works well for people once they get on a regular schedule. I would suggest taking a prevent dose about 30 days BEFORE your next "scheduled" cycle. (September for an anticipated Oct. cycle) After that, you could get on with a once every 6 month schedule. If you feel a cycle building in the background before that, you may consider hitting it with a dose. Many times those "scheduled" cycles begin to show themselves and quickly fade away and need no treatment, but its always good to be prepared, just in case.

The 6 month treatment plan is an "average" for people. Some are up to only needing one dose a year. Others are still building up to that point. Once a month to start and extending the period between doses. It's something that most people can tell by themselves, whether they need a booster dose or not. After years of battling clusers, we are all pretty good about being able to read the signs of what is going on in our heads. You will soon become your best advisor on when to dose.

Having this control of your health and setting your own treatment plan is one of the best things about this treatment. Taking back some control. No more doctors guessing at what to do for you. No more insurance companies turning down your claims. No more ER techs looking for needle marks on your arms. No more co-workers or relatives telling you to "relax and take a couple aspirin."

Best of luck and thanks for the report,
Bobw

Title: Re: Cluster Busting!
Post by cherylc on Jul 1^st, 2007, 11:24am

Thanks Bob. I was feeling a little unsure of what to do next. I am still headache free and feel that this cycle is truly gone!!! The best part is that I did it, by researching this site and clusterbusters (yeah it feels good to take back the control!). And the side effects are nothing ( a little bit like a mild hangover) compared to the medications that I used to take. I add some fresh ginger to my tea. It helps with the taste and the nausea.

So now I have to decide how to prepare for Sept. Instead of living in denial and fear that they are coming, I will be prepared to battle when they do come. Because after 25 years I have to admit that I am a clusterhead.

Thanks again,
CC

Title: Re: Cluster Busting!
Post by Sandy_C on Jul 1^st, 2007, 4:28pm

Hi Cheryl,

I'm a testimonial to the clusterbuster program, but I use the rc seeds instead of the shrooms. I've been an episodic CHer since 1999, with 8 to 16 week cycles every 18 to 24 months.

After my last cycle, I began a tiny monthly maintenance dose of 11 seeds. My cycle tried to start up this past January, so I immediately dosed with 30 seeds, and then another 30 seeds 5 days later. I had one K7 hit, and a couple of K2 to 3, and the cycle was gone.

I'm a believer!

Sandy

Title: Re: Cluster Busting!
Post by horsegirl on Jul 11^th, 2007, 11:20am

where do you get rc seeds?please

Title: Re: Cluster Busting!
Post by LeeS on Jul 11^th, 2007, 11:52am

I would recommend that if you haven't already done so then check out the full details at:

http://www.clusterbusters.com

If you already have, then seed sources can be found in section 11 here:

http://www.clusterbusters.com/faqlsa.htm

All the best with it and please do not hesitate to fire away with any further questions.

-Lee

Title: Re: Cluster Busting!
Post by Jonny on Jul 11^th, 2007, 7:45pm

on 06/28/07 at 00:51:21, cherylc wrote:

I have followed this site on and off over the last few years. I usually come looking for advice and ideas when I am in cycle.

It seems to me that you could help lots of folks if you didnt just come here when you need something.

But thats up to you.

Its good to hear that you are PF, I hope it continues!

Title: Re: Cluster Busting!
Post by horsegirl on Jul 11^th, 2007, 8:41pm

for your information jonny , i try to help when i feel confident in the info i have to share, well except in telling a women to pretend she has clusters, so she could get her husband at least some 02 sense he refuses to ever go to the doc. feel kinda guilty about that,what is your prblem?or did i take that the wrong way.

Title: Re: Cluster Busting!
Post by horsegirl on Jul 11^th, 2007, 8:45pm

oh crap just reread, guess you were talking to somone else, sorry i can be a parynoid b#tch , i hardly ever read the part that somebody puts in a box thats already been said. woops :-X