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ClusterBusters
Jimmy Martinez

any success stories of being CH free for good?

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Hi everyone, I'm not to good with computers so maybe this already exists on the forum but are there people who have "beaten" Clusters for good?

Meaning they have been CH free for X numbers of years and counting? Have these people posted why they think their headaches stopped for good?

I feel like I just need some hope that there are other people out there in the world that have defeated this horrible condition once and for all. 

I'm 46 this month and I'm scared about the road ahead and how my life will be with these headaches. And I hate using Verapamil (makes me feel like it's stressful on my heart) but it seems to be the most effective I've tried. I haven't tried seeds or MM yet but I'm really close.

I've also never naturally ridden out an attack. Meaning an attack never stopped on it's own. I've always had to use oxygen or Maxalt or Migraine strength migraine for relief.

But I feel lucky because this all started when I was 37 and some people have been dealing with this much longer.

Please share with me or point me toward true stories of people permanently defeating CH.

Thank you!

Jimmy-

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Jimmy,

Sadly CH doesn't go away.  It can go into remission, but I've not heard of a single person that it went away forever.  CH can go into remission for several years at a time on it's own.  I myself had a two year remission for no reason at all.  Others might take one of the busting substances and get years between CH episodes, due to preventative dosing.  I know of two people that had approx 10 year remissions while taking a recreational substance (unknowingly preventative dosing).  While others may take the ultimate route out.  

I've read over and over of doctors telling patients that they'll eventually outgrow their CH.  That in most people, it goes away as we get older.  That's pretty much been proven as Horse $#%&.  People stop going to the doc because their was nothing the doc ever did to help them.  That's why the doctors think it goes away.. IT does't go away, the patients do.  (Sorry don't mean to be a downer.  There's only a handful of doctors that I like :)  Most others are useless or worse, counter productive to helping those of us with CH.

The good news is, busting really works and has saved many, many lives (mine included).

PFW,

J

 

 

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I wanted basically to say the same thing. CH does not go away but busting is by far the most effective treatment we have at the moment. Since we in Finland started on Facebook, a lot of people started busting around the same time (over 6 years ago) and those that have been doing preventative busting are still pain free today. That is great for all these people but at the same time they disappear from communities when they finally achieve pain free life, and for new patients it's still rare they hear about busting. Unless they go to certain FB group or this site or clusterheadaches.com. The information about the results does not reach (at least here in Finland) doctors who used to treat these people before they found busting.

It will save your life. It has saved mine and dozens of other people here - my estimate for efficacy is somewhere around 95% (when keeping at it not giving up, doing it pharma free)

Good luck !

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I started clusters 40+ years ago.  I am 29 days into a bad ass cycle and my last cycle was 7 years ago.  Sorry for the bad news. 

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I remember someone here on the forum who got a remission of 30 years I believe and then it came back when in his seventies. 

So, when it goes away, best to consider it as a remission and not think you are 'cured'... to avoid surprises later on

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On 11/10/2018 at 5:50 AM, Tony Only said:

I wanted basically to say the same thing. CH does not go away but busting is by far the most effective treatment we have at the moment. Since we in Finland started on Facebook, a lot of people started busting around the same time (over 6 years ago) and those that have been doing preventative busting are still pain free today. That is great for all these people but at the same time they disappear from communities when they finally achieve pain free life, and for new patients it's still rare they hear about busting. Unless they go to certain FB group or this site or clusterheadaches.com. The information about the results does not reach (at least here in Finland) doctors who used to treat these people before they found busting.

It will save your life. It has saved mine and dozens of other people here - my estimate for efficacy is somewhere around 95% (when keeping at it not giving up, doing it pharma free)

Good luck !

Man, I am such a believer in the power of psychedelics. So it's ironic that they dont seem to be working for me. Well at least for stopping my cycle. About to do my 6th bust in two days. Am I just an unlucky shmuck? I guess my larger concern is will they work as a prev even though ineffective at busting cycles?

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6 th bust in 2 days?  There is your problem. You need to do a threshold dose around 1-1.5g  while off all blocking meds. Biggest culprit is sumatriptan and wait 5 days inbetween busts for at least 3 busts. How much mm did you take. What meds are you on?

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There are two problems. The first is like everyone mentioned, the remission period can be so very long (especially if it's extended with busting), that it's hard to know for sure. But also, a lot of people stop coming to the forum and posting when things are good. Which is only natural. When you're getting hammered by the beast, you want to come and talk about it and get help from others suffering too. But when the beast goes away, you want to get out and live life. So we often don't hear from people for years at a time when things are good.

I've done it. I've drifted from the forum for long periods, then came back when the clusters or migraines got bad again. 

Life is what happens between headaches. 

MG

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Life is what happens between headaches

I had my very first dance with the beast this past November with 1-2 bad hits every morning for 9 weeks. My research led me here which led me to the D3 regimen (thanks Batch!) and to busting (thanks Freud). After 1 week of D3, the hits went away, although I still had daily shadows which were bothersome but tolerable. I then decided to bust which I did for 3 consecutive Saturdays at a low dose. After 2 weeks, the shadows disappeared. I've been pain free since then! I also get  Chiropractic, Acupuncture and Myofascial work regularly. I also added additional nutritional supplementation. I've been on strict Keto diet for 4 weeks as well. Do I think I'm cured? No, not really. But it's my professional opinion that I have the beast tamed for now! If it rears its ugly head again, I'll be ready to do battle...It's all we can do. In the meantime, like Moxie said, "life is what happens between headaches"! 

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HI JJinNJ,

Glad to hear you've been able to quiet the beast, and so quickly! Well done. It often takes people years and years to find us and try things outside of doctor's recommendations. 

I'm a trained sports massage therapist, and am a big fan of Chiropractors and Massage & Myofascial manipulation. Seriously good for all types of headaches and blood flow. No personal experience with Acupuncture, may get around to trying it one day out of interest. 

I'd also recommend you do some research into maintenance dosing, if you haven't already. It's a good way for episodics to keep the next cycle away. I'm not episodic, so have never done it quite that way. But there is plenty of information on it here.

MG

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have not had a shadow or attack since Sept 2016. Don't drink , don't smoke, make sure I stay hydrated and I microdose shrooms 3 times a week. Just dry them up and grind them into .2g gelcaps and treat as normal preventative meds. They seem to have other benefits also for depression and productivity.  Used to always get CHs around the change of the seasons or from overheating playing sports in summer but nothing since. I still get a clammy feeling around my temples at the seasons changing but just no more CHs or shadows. This site led me to using shrooms, thanks so much for that, would never have discovered that on my own.

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