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Just an Idea


BoscoPiko
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I know this might get viewed in various ways. Yes I am a new sufferer so maybe that gives me less merit in what I have heard called Cluster Ville. I feel like so little attention is being paid to the depression that accompanies having your life swiped? Maybe that's just me but I have a hard time believing it. Are we really reduced to a suicided prevention link?  I know I would like to see an extra link on the General Forum. I struggle daily with not wanting to be here anymore as all I have ever known is gone. My brain is different and try as I might to move through a day like I used too; is past tense.  As much as I want to make believe that I will get the prior me back; I have given up hope that I ever will. I suppose what I am saying is that it would be nice and reassuring to see some of you or hear of you having good days and to see what that sounds and looks like?  Not just the busting days that we are not all brave enough to do, but days after you have a breakthrough? What does that look like? What do you do? Do you fish, spend time with the the kids do you ride moto, horses, idk just wondering how your brain stays wanting to stay alive?  Can we have a tab for that?  Post pic's of loved ones, animals, beautiful walk; just a happy place to post? Maybe someone other than me would find this hopeful?

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Hope you like cats…..this is the real Ganuchi…….my best friend for the past 15 years 

She always puts a smile on my face so hopefully she can do the same for you 

Please take care and don’t let the Beast get the best of you 

600925C5-D943-4C87-B711-CC79F1A3E73D.jpeg

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5 hours ago, Ganuchi said:

Hope you like cats…..this is the real Ganuchi…….my best friend for the past 15 years 

She always puts a smile on my face so hopefully she can do the same for you 

Please take care and don’t let the Beast get the best of you 

600925C5-D943-4C87-B711-CC79F1A3E73D.jpeg

I love cats. And she is a beauty:) I don't mean to sound like such a downer it's just that sometimes when looking on this site it sure would be nice to see something other than years of pain. I have a bit of a hard time accepting the loss of the old me that's all. So funny that the real Ganuchi is your kitty as the real Bosco Piko is also my cat.

 

 

Thank you for the pick me up:)image.png.753da258b14eea2a644ef3a00af471ad.png

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How cute…..love the eyes!  Funny that we named ourselves after our cats!!  I hope things turn around for you but I do completely understand the despair….we all feel it at some time or another 
 

And yes @spiny…..Ganuchi lives the life  - she is quite regal!  I ask her all the time if we can trade places for at least a day but she has no interest in such:wub:

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OMG….so glad you gave them a home!  We have considered a “barn buddy” cat for my work but the lady at the shelter said we have to keep it locked up in a cage for two weeks so it learns where it’s home is and I thought that was kind of cruel…..maybe we will re-consider!

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Maybe this will get easier to accept as time goes by and as I get better at managing this monster. I just have found that in surfing through the forum files (please do not get me wrong as there is a plethora of valuable information) I find myself spooking a bit at the suffering and constant need to switch things up to keep our brains from trying to kill us. The thought of the rest of life being this way reminds me of a line in Drewbies (may have spelled that wrong) track that I just listened to the other day where he mentioned not taking a moments peace for granted, talk about watery eyes and slumped shoulders. I suppose we should never take anything for granted anyway, I just personally do not know of anyone that says, “high five I made it through a movie without spiking out.”

 

For me, I love to ride my horse. Something about the concentration and emotional connection needed to be in collaboration with a 1,100 lbs. animal is amazing. You have no time to think of anything other the ques you are sending between yourself and the horse so the release for the mundane is wonderful. The reward when you master something that you really had to work at a flying lead change or a roll back or super long sliding stop is more than enough.

 

It has been hard for me to have missed so much in these cycle months that I just wonder how others stay happy during them hence one of my posts on here not to long ago “How do you all Stay Happy.”

 

I just thought it would be nice to see good days, a bit of inspiration. Living proof that people with CH still from time to time get to live normal and (sometimes) fulfilling lives too!

 

Maybe just maybe, enough attention will be brought to this condition that something will be developed to give us back some of what has been ka proofed.

 

That’s all:)

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28 minutes ago, BoscoPiko said:

Maybe this will get easier to accept as time goes by and as I get better at managing this monster. I just have found that in surfing through the forum files (please do not get me wrong as there is a plethora of valuable information) I find myself spooking a bit at the suffering and constant need to switch things up to keep our brains from trying to kill us. The thought of the rest of life being this way reminds me of a line in Drewbies (may have spelled that wrong) track that I just listened to the other day where he mentioned not taking a moments peace for granted, talk about watery eyes and slumped shoulders. I suppose we should never take anything for granted anyway, I just personally do not know of anyone that says, “high five I made it through a movie without spiking out.”

 

For me, I love to ride my horse. Something about the concentration and emotional connection needed to be in collaboration with a 1,100 lbs. animal is amazing. You have no time to think of anything other the ques you are sending between yourself and the horse so the release for the mundane is wonderful. The reward when you master something that you really had to work at a flying lead change or a roll back or super long sliding stop is more than enough.

 

It has been hard for me to have missed so much in these cycle months that I just wonder how others stay happy during them hence one of my posts on here not to long ago “How do you all Stay Happy.”

 

I just thought it would be nice to see good days, a bit of inspiration. Living proof that people with CH still from time to time get to live normal and (sometimes) fulfilling lives too!

 

Maybe just maybe, enough attention will be brought to this condition that something will be developed to give us back some of what has been ka proofed.

 

That’s all:)

I agree that CH needs more attention……the majority of people (even healthcare workers) don’t know what it is…….after you explain they then assume it’s migraine 

 

It’s easier said than done but don’t let it steal your life.  There will always be awful days but all we can do is try to move past.  Your air quality issues are probably making this worse so hopefully CA can figure the fire thing out……maybe a humidifier will help (I sleep with one and it has made a difference).

 

Hang in there…..your cat and your horses need you!

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11 minutes ago, Ganuchi said:

I agree that CH needs more attention……the majority of people (even healthcare workers) don’t know what it is…….after you explain they then assume it’s migraine 

 

It’s easier said than done but don’t let it steal your life.  There will always be awful days but all we can do is try to move past.  Your air quality issues are probably making this worse so hopefully CA can figure the fire thing out……maybe a humidifier will help (I sleep with one and it has made a difference).

 

Hang in there…..your cat and your horses need you!

Thank you Ganuchi:)

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We have a member, Moxie, who says 'Life is what happens between Clusters', or it is very similar to that. Many do look at it that way. 

Also, there is the ancient Story of the old woman who carries her pig with her everyday when she goes to town. This began when the pig was a piglet and weighted less than a pound. Now he is big and strong and weights over a hundred pounds, but still she carries him everyday. The people look at her in amazement and she shrugs it off. It is just something she does daily and that is why she can carry the 100 pound pig.

I look at my head that way. Yes, it is a burden, but since I carry it with me daily, I am strong enough to do so. You are too. Take it one day at a time. Soon, you will be dealing with most of what it can throw at you from a position of knowledge, not a blank page that leaves you afraid and lonely. And when you figure out how to deal with your very own beast, you will feel like you can conquer anything. 

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7 hours ago, spiny said:

We have a member, Moxie, who says 'Life is what happens between Clusters', or it is very similar to that. Many do look at it that way. 

Also, there is the ancient Story of the old woman who carries her pig with her everyday when she goes to town. This began when the pig was a piglet and weighted less than a pound. Now he is big and strong and weights over a hundred pounds, but still she carries him everyday. The people look at her in amazement and she shrugs it off. It is just something she does daily and that is why she can carry the 100 pound pig.

I look at my head that way. Yes, it is a burden, but since I carry it with me daily, I am strong enough to do so. You are too. Take it one day at a time. Soon, you will be dealing with most of what it can throw at you from a position of knowledge, not a blank page that leaves you afraid and lonely. And when you figure out how to deal with your very own beast, you will feel like you can conquer anything. 

This was very well said. Thank you for the wisdom. I do imagine I am just not used to this new norm..

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I live between attacks. I am chronic ch with little to no breaks...ever. been this way for 10 years. My hobbies include dabbling in psychedelic drugs and I live way off the grid on our family homestead in Montana. I am a retired professional musician and I love hanging around with my odd friends who are mostly societies rejects. I am married and have six kids. I am the ultimate mountain man stoner punk rock dude blessed with the beast. The beast is my friend cause he likes me to do shrooms to make both of us happy. I am happy just to participate in this brutal life us ch folks live. We are super heroes. Best to all. Psychedelic Brian reporting from the lp3 ranch.

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On 9/7/2021 at 6:31 PM, BoscoPiko said:

Maybe just maybe, enough attention will be brought to this condition that something will be developed to give us back some of what has been ka proofed

Between CH'ers already having gotten together and figured out ways some of the luckier among us can gain some long remissions, plus likely upcoming medical advances, my money is more on probably than maybe high percentages of young whippersnappers like you will beat this thing, as in killing the beast permanently dead, and its little dog too (the sort of PTSD that can be one of the after effects of it).

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13 hours ago, Bejeeber said:

Between CH'ers already having gotten together and figured out ways some of the luckier among us can gain some long remissions, plus likely upcoming medical advances, my money is more on probably than maybe that high percentages of young whippersnappers like you will beat this thing, as in killing the beast permanently dead, and its little dog too (the sort of PTSD that can be one of the after effects of it).

This is some positive stuff rt here. I like the probably! I like hope, lord knows we all could use some! 

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There are trials going on currently, I believe, using schrooms for CH and PTSD. A co-operative union of the VA and Yale (or Harvard). Hey, if I don't think about it weekly, I lose a bit!  ;) 

It is being held in the northeastern part of the country. So, 'probably' is a very real statement. So, lock onto that and march yourself forward with a feather in your cap and a smile on your face. It is going to get better - for the first time ever!!! It has already been proven that MM is a 'best' med for CH, that is why it is in trials!

There are people on this site who dreamed of and made a reality of going to Congress to get O2 approved for Medicare patients. After some 6-7 years, guess what? It is now being approved for all old clusterheads. No, we have not 'aged out'! 

Pretty much all forward progress began here, years ago. Many thanks to those who led the way!!!! :wub:  I am forever grateful.

Go to NIH.gov and type 'cluster headache psilocybin trials' in the search bar. You will find some reading material there. This one will keep you busy for a day or two: The Therapeutic Potential of Psilocybin! Enjoy! Oh, and somewhere in there, it will tell you if it is Yale (my vote) or Harvard (cya).

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23 hours ago, lp3 said:

I live between attacks. I am chronic ch with little to no breaks...ever. been this way for 10 years. My hobbies include dabbling in psychedelic drugs and I live way off the grid on our family homestead in Montana. I am a retired professional musician and I love hanging around with my odd friends who are mostly societies rejects. I am married and have six kids. I am the ultimate mountain man stoner punk rock dude blessed with the beast. The beast is my friend cause he likes me to do shrooms to make both of us happy. I am happy just to participate in this brutal life us ch folks live. We are super heroes. Best to all. Psychedelic Brian reporting from the lp3 ranch.

I am glad that you have found a way to live! I am still struggling with that part but I'm getting better with a little help from this Cluster Custer community:) I haven't been brave enough to dabble in the MM or RC seeds yet but have recently started the D3 which has helped (hasn't made the boogie man go away entirely) but heck my life has improved and I'm not thinking of death so yea me! I love Montana though I've never really been to visit, passed through as a kid but that's it. Don't do the Mary J although I did try a few months back but I think now days everything is much stronger than when I was a kid coming home with the munchies as when I tried this time to see if it would help my daughter in-laws hair turned blue?? Yikes no bueno went to bed and said never again. Sensitive I suppose? I truly wish you lots of painless days!

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2 hours ago, AlanK said:

Also try clinicaltrials.gov and use search boxes.

I have and they kina just scare the bejeebies out of me.. So I only have a consult set for the 28th of this month I figure it cant hurt to learn? 

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6 minutes ago, BoscoPiko said:

haven't been brave enough to dabble in the MM or RC seeds yet

RC shouldn't take much bravery, since typically we sleep right through it when ingested before bed, but you could always have some valium or xanax handy just in case - those'll seriously calm down any anxiety ridden ("bad") trip.

 

8 minutes ago, BoscoPiko said:

Mary J ......I think now days everything is much stronger than when I was a kid

I KNOW it's a zillion or two times stronger than when I was a kid!

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