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when you are thru those constant series of CH's ?

I seem to get about 4-8 in the evenings and at night. O2 helps for most, but then I just get to where the tank isn't doing it anymore for the series of the day.

At that point, I hit the coffee (at 11pm or 1am, depending) and plan on sitting straight up for about 2 hours. Leaning back makes my neck hurt more and lying down will start everything all over again.

But, I have noticed a very odd but pleasurable feeling. It is like my brain is relaxing and expanding. I can feel it fill my cranium from side to side again. 8-) Almost a relaxation in my head. Well, actually that is what it does feel like - my brain relaxing.

BTW, I do not believe their there are pain receptors in the ole grey & white. That is what makes it rather remarkable to feel it happen.

Lately, that is the most pleasurable feeling, because it means that I will get to sleep for a few hours, not minutes.

Anyone have something that they attach to The End? Not just to the end of pain, but to the end for the evening or day.

spiny

who did not get this lovely sensation last night >:(

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I do not believe their there are pain receptors in the ole grey & white

the brain itself does not feel pain, nerves and blood vessels that weave in and out of small openings in the skull and cartilage are the culprits

i know when a bout is over when i get a popping in my head, almost like my "hard drive" gets rebooted, my mood begins to immediately improve, as when an attack is coming, i get real grouchy and irritable before the pain starts. its like a switch that gets flipped on/off also my sniuses will pop and clear up, and the swelling of my nasal cavity decreases and i can breathe again

as far as cycles ending i have no idea how i would know, moslty if i forget that i have CH the cycle is over... would probably be a good guess. all my cycles were terminated with prednisone or dexamethasone, and the ones that did end on their own way back when, it was so long ago i dont recall, i didnt even know what i had at that time

o2 does lose efficacy every now and then, coffee nrg drinks and or a dose (small .5g-1.0g) will improve o2's effectiveness. kinda like it needs a helper, or an enhancer

what i mean when i say this is not generally at the moment with a dose, but the days following it. o2 stops working, dose and for a week or so o2 works well but slowly tapers off until i dose again...

if im on the o2 for 20 mins and i feel no improvement otherr than the attack staying stable, not climbing or decreasing. i usualy have about 10 mins before it will climb again, which is enough time to make a cup of coffee. i will quickly drink the coffee while i go back on the o2....breathe for a few breaths sip some coffee and i notice improvement or termination of the attack.

sometimes its a reall battle, ill be on the o2 with a 7, get it down to a 3, o2 wont abort, i take a break and it will get back to a 5-6, go back on the o2 and knock it down to a 2-3.... back and forth like this for an hour or two. sometimes it wont kill the attack but its enough to keep chopping away. like a hatchet cutting down redwoods in the old growth forest... though o2 wont fully abort the attack, a 5-7 is better than skull scorchers in the 7-9 range

for me, kip 10 doesnt exist, because if it did, i wouldnt....

a dose is near for you spiny, isnt it?

AO

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  • 2 weeks later...

I get the relaxion sensation at the end of a hit as well.  very much like you said, my brain feels like it's relaxing, though for me, it also includes the smooth muscles on my scalp.  I get the classical CH pains along the trigeminal nerve, but I also get these "cramps" as I call them on the back and side of my head where the CH is active.  It has something to do with the small muscles on my head because I can sometimes stretch them out or massage them out.

Sometimes, though, the Beast likes to throw me a curve and I will think that the hits are over for the night, but then they return a few hours later....

Take care.

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I don't think I've really ever felt any of that. In 5 years of having them, my longest break has been almost 2 months. I think, in that gap, perhaps I relaxed a little. But I'm always on edge, always expecting the next one at any moment.

My friends say that is a bad thing to do, that I should try and forget them. But they don't understand. They don't know what shadows are like, and to have that shadow hanging over you 24/7.

But, since busting, the shadow has cleared and there isn't a demonic presence in my mind between attacks. I haven't relaxed yet, still waiting for the next one. But I can imagine a day will come where I might.

Renée

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since busting, the shadow has cleared and there isn't a demonic presence in my mind between attacks.

Not sure if this is a directly related note, but relief for PTSD is a real benefit of busting with psychedelics, which are also being used in clinical settings to effectively treat PTSD unrelated to CH.

My personal experience is that post busting I can no longer summon up the sheer terror regarding the possibility of CH attacks that used to always be there (not that I'm assuming future visits from the beast couldn't undo all that - don't wanna jinx myself too bad here! :o)

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since busting, the shadow has cleared and there isn't a demonic presence in my mind between attacks.

Not sure if this is a directly related note, but relief for PTSD is a real benefit of busting with psychedelics, which are also being used in clinical settings to effectively treat PTSD unrelated to CH.

My personal experience is that post busting I can no longer summon up the sheer terror regarding the possibility of CH attacks that used to always be there (not that I'm assuming future visits from the beast couldn't undo all that - don't wanna jinx myself too bad here! :o)

WOW! I hadn't realised that, or had forgotten that I read it somewhere. I know what you mean about the sheer terror. I once wrote a piece about how the PTSD was so bad after an attack, it was like I was a child abused by their father in an alcoholic rage. After attacks, I would shake and cry to that extent. A friend of mine had a real go at me for writing it, said I had no right to make that comparison. But she doesn't really understand. It is just the same. Absolute terror!

But, since busting, I haven't had that. Not once. I keep expecting it, waiting for it to strike, but it doesn't. I have an attack, it ends, and I get on with life. No 30 minutes of tears and the shakes racking my body.

Thank you for bringing this benefit to my attention.

Renée

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Neat!

We all seem to have some different or similar feeling.

The one that I am referring to is the one when you KNOW you are going to be able to sleep or rest or work in peace for a few hours, not minutes. Not when a cycle is over. I never know THAT either.

Sometimes I KNOW that from the feeling inside my head. The transmitters my be located in the sclera or skin or somewhere else, but I feel it inside my skull. Unlike any other sensation that I have had from some activity or inactivity. The same as I feel the swelling and pressure of the Shadow for long periods of time, but there is no swelling to be seen.

When I have the good fortune to feel that, it is one of the most pleasurable, for lack of a better word, things in my world. It means the end of 8-9 hours of being consumed.

Perhaps that clarifies a bit.

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Excellent description Spiny, but I've never had anything like that.

When my clusters started, 90% of the time they hit me at 19:00 and/or 19:20, and often on a Tuesday. If 19:30 came around and I hadn't had an attack, I knew I could rest easy. But that was only the 1st year.

Since then, I get attacked anytime of the day or night, and usually out of the blue. No warning, just WHAM! And I have no indication it is over for the day. Ever.

Renée

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