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Elliott

Gonna Get A Lot Of Flames, But I Think I Found The Cure

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Chose this board because it has the most posts.  Apologies if it needs to be removed.  I do not apologize for using the term "cure".  I love all of you guys, and I'm sharing this completely catch-free because I believe I found it.

IMMEDIATELY MANAGING "SHADOWS":

Over the 10 years or so of battling bi-annual attacks, I have come to find the best therapy during a shadow(or an attack for that matter) in thr absence of medication is massaging a small area at the base of the skull and even the trap muscle of the affected side.  I picked up a Brookstone Brand Shiatzu Heated Neck massager at the airport about 6 months ago.  It seriously works.

 

Every.  Single.  Time.

 

LONG TERM REMISSION MANAGEMENT:

I have been busting via full(not micro-doses) of psilocybin and lsd, preferring the latter.  Sometimes I have experienced rebound headaches after the bust, but I attribute this to the overuse of imitrex injections I use when the attacks start and I am scouring the drug-scene for the 2 psychedelics.

 

About a year ago I returned from Syria after serving in the war.  During that time, I had been popping antibiotics and deeply compromised my immune system.  I began to research my symptoms and came across parasites.  As I mentioned earlier:  I have been dealing with CH for about 10 years with bi-annual cycles.  Since taking Candida detox, Fluke detox, and other parasite-marketed homeopathic regimens, I have been cluster-free for 1 year.  I wanted to make sure a certain milestone of time had been achieved, because honestly people I have interacted with on this subject have been extremely rude and derail the entire thread with flames and accusations that I am somehow a shill.

 

Let me be clear:  I am not affiliated with any company.  I am a 27 year old sufferer of CH and I am motivated by seeking others who can validate my results and to relieve this nightmare from you all, an empathetic community.

 

I have attached both the things I mentioned in this thread, and I hope they help you as much as they have helped me.

 

***Note:  The initial detox i did was with something called Dr. Tobias CandidaFX, BlackWalnut/Wormwood Tincture from VitaminShop and non-GMO papaya seeds.  I have linked the PipingRock products I am currently taking just to seal the deal.  They are much less expensive and it is a much greater volume of products.  I plan on either doubling all the doses after the 1st bottles, or running 3 back-to-back.

***APPARENTLY I CANT ATTACH IMAGES***

1)  Brookstone Heated Shiatzu Neck Massager

http://www.brookstone.com/pd/shiatsu-neck-and-back-massager-with-heat-automated-programs/863806p.html

2)  PipingRock Candida and Probiotics (I bought 3 of each)

OR

CandidaFX by Dr. Tobias

Align Probiotics

BlackWalnut/Woodwood by Nature's Answer

NON-GMO Papaya Seeds

(Walmart papayas have like 10 seeds inside.  Mexican store papayas have like 400)

Edited by Elliott
Grammar and spelling

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To clear something up:

 

I have been having shadows for the past 6 months accompanied with the Right nostril becoming inflamed and closing up.  But it never progressed to a full cluster, not even close.

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Elliott, one place where people have been quite confrontational with you is here, where you posted about parasites almost a year ago.  I appreciate your coming back with an update, and I don't doubt that your only motivation is to share what you have experienced.  To avoid a repeat of what became considerable "confrontation" the last time you posted, I'll just link to that thread, with virtually the same title as this one: https://clusterbusters.org/forums/topic/4894-i-think-i-may-have-found-the-cure/#comment-51265

 

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On 18/02/2018 at 2:40 AM, Elliott said:

To clear something up:

 

I have been having shadows for the past 6 months accompanied with the Right nostril becoming inflamed and closing up.  But it never progressed to a full cluster, not even close.

I've been having shadows for 8 months now following a remission of 11 years.  I also get a blocked right nostril, which in itself is can be very painful, both while it's happening and once it's cleared because it all feels inflamed.  I haven't had a full CH attack in the whole 8 months.  I get periods where it improves for a few days and others where the shadows are dreadful for a while.  I've been through this many times since around 2000.  Prior to that, I went through 7-8 typical episodic bouts of CH.  Since I started having these shadow bouts, I've only had 5-6 full CH attacks and some extremely long remissions.  

It might be of interest to you or anybody else reading.  I'm sure these symptoms are common amongst CHers but you don't often hear them described.

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Pick up that massager man.  It's great.  My remission periods have hit the 8 month, always at least 6 and usually on the dot as the seasons change.  Never have I hit 12 months until now though.

Edited by Elliott
Clarification

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I'm glad to hear you have been getting relief from your pain.

I don't doubt that you have clusters, but with the neck massager working so well you might want to look into the whether or not you have cervicogenic headaches as well.

https://americanmigrainefoundation.org/understanding-migraine/cervicogenic-headache/

I think the problem that you are going to have here is that you were never actually diagnosed with any sort of parasite.  Maybe you did have one but it's hard to go on the assumption that you did just because you felt like that's what happened.  Complicating things is that there have been people who have gone into remission for a year or more without much rhyme or reason to it.

One thing that I am confused with is that you said you have been dealing with CH for 10 years but that the big thing you think that is the problem happened 1 year ago after a whole bunch of antibiotics.  What about the other 9 years? Am I missing something?

-Ricardo

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CH is a strange beast. Back in 96 i got devorced and for some reason I was CH and migraine free for one year. One complete year without a headache. Well they came back and have been back since.  

Edited by mit12

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3 hours ago, mit12 said:

CH is a strange beast. Back in 96 i got devorced and for some reason I was CH and migraine free for one year. One complete year without a headache. Well they came back and have been back since.  

I'm 'in' a cluster right now and hadn't googled CH for a while, landed here and your post struck me right away.

a theory I have had for some years now is that my attacks start when I relax after a period of stress

I work in IT management and in my job drink bucketfuls of stress daily (luckily I sh1t out spreadsheets so, swings and roundabouts)

My Clusters happen approx 2-3y intervals but seem to always coincide with coming off a job, pootling around for a couple of weeks and then BANG.  There are some other factors, diet, alcohol, sinus problems that actually 'trigger' me but I seem to be vulnerable when relaxing - in fact I've had notable attacks when on holiday (nice)

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Mark...that could be described as one diagnostic indicator of CH.....many here can tell stories re getting SLAMMED post stress (I could wax demented on it). One member on another site has advised something like: NEVER sleep...NEVER relax. It is, of course, clusterhead humor.....but funny can be found in truth many a time....see George Carlin.....

Best

Jon

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If  Shiatzu Heated Neck massage helps for more people, I'm sure others in our group would like to try. Difference is that all we do we convert into data. 

In our point of view, if symptoms registrations go down, the patient could be doing something that has a positive effect. We can all copy that, collect the data about it and compare. If more patients get the same results, it could say something about the effectiveness of the treatment.

If you see it with most patient, you could speak about a trend.

These trends can be used to get alternative treatments accepted.

 

Good thing is, we have it supported with our data and not only patient experience

 

 

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I now have 26 people in one group, most have clusterheadaches, others are an medical data scientist, a PhD, a neurologist, 2 mathematics. (they can analyse to, but look at data different than a medical person, so see other things)

We believe that only looking at patients in combination with medicine, is not enough. So we don't ask for nothing more than that you collect your story in data and work together with fellow patients.

Talking is nice, data talks better :)

 

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Markk,

You have a similar situation that I have. Before I retired  every time I was looking forward to going somewhere or doing something special I would get hit with clusters. I would also get clusters when the stress of work went away. The only way I was able to keep working was that 99% of my cluster attacks started with a Migraine at 3:00pm and with in 1 1/2 hour the clusters would start. This happened 3 to 5 days a week every week over 30 years. Thank god I found this site and thank god you found this site. There are a lot of great people in this Community that can and will help you. They have saved my life. Please look into the busting process and Oxygen. 

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