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Is CH genetic?


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  • 1 month later...
I am one of 14 children, currently have about 60 nieces and nephews and even a couple great nieces and nephews...thus far, I'm the only winner of the CH lottery!

And I'm betting that you hope you stay the only winner of your family Joe.


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Paternal Uncle definite sufferer....Paternal Grandmother severe headaches (I remember watching her cry and taking amitriptalene as a preventative.  We need research dollars to continue to answer these questions!

If it is genetic, I'd sure like to know (before I croak) my descendants could readily get BOL prescribed!


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  • 1 year later...

Hi Linda,

Well your inheritance is one heckuva bum deal, but glad that you're reading everything and can see that the outlook and treatment options are much better for us now than when your dad started experiencing CH 25 years ago.

I certainly feel that with the advent of the internet and busting (not to mention the potential of BOL when it becomes available) it's much more hopeful now than when I first started in with CH 32 years ago. Hmmmm...that probably comes off as "when I was kid I had to walk 10 miles in the snow to school"  :D, but I actually feel lucky to be in this new era of CH treatments. Of course that positive outlook could very well be due to the side effect of having busted with mushrooms!  :)

I hope you and your dad can both bust the CH away.  8-)

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Linda: What Jeebs said! :)

My mother and son have migraines.

Otherwise, no headache issues from grandparents forward.

But, mine started exactly 3 months after a traumatic injury to the left side of my face that chipped my jaw among other things. The concussion knocked me out for about 20 minutes.

I am not convinced that trauma is a major cause of CH, but it seems to have had an affect in my case. Neuro's at the time said that the 3 month onset was consistent with headaches caused by trauma.

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Thanks bejeeber and Spiny.  I am so glad I found this cite. I do not fel like I am losing my mind now.  I have been having them for eight years now and can not get any medicine to work.  Prednisone was working until this cycle but after gaining 20lbs found it did not get rid of them. Found some shroms but so afraid to do them. Please let me know if either of u have done them and how your experience was please.

Thank you so much

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I was in a boating accident where I was thrown out of the back of a boat moving around 40mph. Unfortunately my face was the first thing that hit. The water went into my left eye and at the time I thought it ripped out. I was blind for a minute or two then my vision returned, all good I thought. That night not even 6 hrs later the beast made his first visit behind the same eye. Ofcourse I thought it was a aneurysm from the accident and I was dying based off of the pain I felt. That was 11 yrs ago. I have no other CH'ers in my family. My mom is 100% Italian so that side is huge and my dads is bigger than average as well. Actually most dont even know what the hell it is.

Linda - I  have always done the pred but this yr it stopped working. I also have put on some weight from it. Listen to these guys. I am very new to this site but have already started busting with seeds and shrooms and it does work. good luck

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Found some shroms but so afraid to do them. Please let me know if either of u have done them and how your experience was please.

People's experience with being under the influence of mushrooms sure seems to vary quite a bit.

From my own experience and what I've observed others report here, I believe the younger you are, the more likely you are to enjoy it.  :)

Personally, my first bust with mushrooms was actually quite enjoyable - I made sure to get my set and setting as good as I could and was diggin' the tunes I was listening to, enjoying the mild hallucnations, laughing, etc.

The second bust was more rushed, without attention to setting, and I got purty good and anxiety stricken for the couple peak hours under the influence, and the eyes closed hallucinations weren't so hot either (swarms of insects, etc.)

Then Pretty much the same unpleasantness for the 3rd bust.

Funny thing though is that even though the few hours under the influence became a negative experience, there has still been a definite, lasting mood and optimism improvement following the busts, something that is being shown to be a real, positive effect of mushrooms in clinical tests like this one:


I'm an episodic, we tend to have an easier time with busting (or any treatment) than chronics do, and true to form the busting prevented what were some oncoming CH episodes for me.

I'm really glad I did it.

So I figure you'll want to carefully consider your dose, maybe 1 to 1.5g, weigh it out carefully, and get a good set and setting. Having an understanding 'sitter' that you know well and trust and who isn't cuckoo or anything is ideal.  ;)

Of course if you're still afraid, you could try RC seeds first and save the mushrooms for your backup plan. I don't think that would be a bad idea at all. The RC is relatively cheap, legal to order online, and IMO there's nuthin' to be afraid of there. Typically you take 'em right before bed and all you feel is a better night's sleep than usual.  8-)

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You are welcome. Jeebs is best for info on busting.

Most meds suck over the long haul. Pred is a big offender. Weight, as you found out and hip and shoulder joint deterioration too.

However, O2 at 25LPM is a life saver. 8-) 8-) You didn't mention using it, so here goes. You also need a non-rebreather mask. You can use a welding set-up and use its' regulator, just open it enough to keep up with your breathing and turn it down as you need less.

Hyperventilate at first until the pain recedes considerably. By that I mean exhale WITH FORCE and inhale WITH FORCE. Repeat. Focus on your breathing, pulling your diaphragm down with each breath. I picture a beach ball for my lungs and expand and contract to that visual.

When the pain allows, breath normally. CONTINUE WITH THE O2 FOR AS LONG AS IT TOOK TO KILL THE PAIN. Don't go 'Yea!!! It's gone" and stop. If it took 5 minutes or 60 breaths to kill it, go that long again. Otherwise, you may (probably) will setting up for another hit in short order. Without O2 and family and forum support, I would have given up in December.

In short, as you will learn here, most members get by with vitamins and O2. These two things provide them with more PF time than all meds previously taken. Without the hellacious side effects.

The only thing I can add to Jeebs great post is that benadryl and I think Skullcap can help with any anxiety from taking the meds. Maybe Skullcap is for nausea?

Someone will correct my error.


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Good thing Spiny and I are teaming up here because she brings up super important stuff that I left out - I'm very much in agreement about the importance of high flow 100% O2 (not the still commonly prescribed low flow rebreather O2 which tends to be ineffective).

And yep that skullcap herb is known to help ease or prevent anxiety when busting. Hopefully you don't FORGET to take it with a mushroom bust like I did. DOH!  :D

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My brother and I were adopted when in childhood, so much of our medical predispositions are unknown. However, we both suffer from headache, but the headaches are not quite the same. Mine are definitely clusters. His treat him more like migraines and have responded to migraine treatment, but seeing him with an attack is like watching myself. I can tell they are harsh. His are also episodic, I am chronic.

After I found this community and busted the first time, I let him in on the 'secret' and it helped him as well.

So that's it fwiw. File this report under 'maybe.'

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As a Newbie on this forum Hello ya all :)

Ive suffered for 10-15 years Diagnosed in 2008.

My Daughter is also a suffer but no one else I know of (relatives)

Odd though In talking to my neighbor it turns out he is an undiagnosed suffer.

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