BoscoPiko
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Posts posted by BoscoPiko
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18 minutes ago, Bejeeber said:
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.
I KNOW it's a zillion or two times stronger than when I was a kid!
I just have always been so against meds and now I feel Like every time I turn a corner I'm having to pop something. I am around a lot of people on Xanax and I guess still coming to terms... That's all (fighting the obvious) Just need time I suppose to admit that I am wanting to off myself entirely 2 often, cry at the everything... I am a cowgirl for f sakes... I just don't know where me has gone.. Ill find her and drag her back, kick her arse for playing in the mud for so long and get back to ME.
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2 minutes ago, Bejeeber said:
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.
I KNOW it's a zillion or two times stronger than when I was a kid!
I tell you my daughter in laws hair turned blue at the edges.. That's all it took and i only took one puff.. light weight I know
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4 minutes ago, Bejeeber said:
I thought I heard my name mentioned...
Silly... Indeed you did. No wonder why you gave yourself that handle
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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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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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38 minutes ago, spiny said:
I would fear that bill too. But hey, in Cali you might find a doctor that will prescribe that pool for your CH!
Then it has to be allowed, no? Not that I actually know, but it would be fun to do it!
LOL.. You crack me up.. One would indeed think that in the land of skittle farting unicorns that you could at least get a script for a pool.....
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5 hours ago, SpidaH said:
Hey folks,
I just joined, so I first want to say- sorry if this is redundant to the veterans, as I havent read through all the threads here, yet.
Second, I'm not sure the etiquette here, but I tend to swear and use harsh language, so sorry for that, in advance.
Also, would like to thank the founder of Cluster Busters. Mainly, for bringing some awareness to the world, for creating a (I don't like the term, cuz it makes me feel I've got a problem hehe) a support group, for people that go through the same thing that made me feel like a "freak", that I hid from everyone, for so long.
I'm a 47 year old man, living in Southern Manitoba, Canada (about 40 mins south of Winnipeg). I'm a smoker, a joker, but not a midnight toker....anymore. (quit that when i was in my 20's). I'm an avid fisherman, I have amazing family, friends and a supportive caring sexy woman to go through the rest of my life with, God willing. I'm not a real religious man, but I often think so much beauty, awe and wonder, simply could not have happened "by accident".
I have had episodic Cluster Headaches since about age 24. At first--I thought I had a cavity/toothache, affecting that nasty little bastard nerve we all have come to get familiar with. ...then as the next cluster of attacks (I don't call them headaches, because I feel it's misleading the public), I was convinced I was dieing of a brain tumor.
Being a stubborn male....I avoided medical help, and thought I'd just die like a man, if that was how I was gonna go. (stupid, I know). Then I snapped out of it and sought out medical attention. It was the typical set of mis-diagnosis, running about 5 yrs til I got a doc that was aware of CH.
Fast forward to shortly after proposing to my fiance, on August 3rd, 2021----the beginning of my personal torture interrogator showed up, after a 3 year hiatus from hell.
I scrambled to get some old prescriptions filled--- Verapomil and Rizotriptan.
The rizotriptan does reduce the torture, from a 10 of 10 pain, to a 4 of 10, IF I TAKE IT IMMEDIATELY at the very start.....however, like most---my torture iterrogator shows up roughly at the first onset of my deepest sleep, so by the time I wake up from pain, it's already at 3 or 4.....and the Rizotriptan has to climb a steep hill to catch up, only making it to where it's at an 8 of 10
So I was at the end of the cluster period, last Wed, when i had my last one, then went 4 nights, pain free! Hazzahhhhhh!!! I'm done!!!! .....or so I thought.. I weened myself off the verapomil, from 3 pills daily, to 1, yesterday....well hello you sick sonofabotch! Woke up last night with a 4 of 10---rizo down the hatch...you folks know the rest---wait for relief...pace.....hold my head.....shake my fist at my own brain....curse human existence.....wait...pace....stomach bloating--sign of rizo coming into to help....GI tract protesting the drug...too bad GI tract, there's a bigger fight, deal with it...pacing waiting.....annnd relief.
So-- to anyone that has used verapomil---- should I be concerned about stopping, for fear of rebound cluster period??! This scares the shit out of me--the thought that the drug that seems to have turned off the attack cluster period (usually 6 weeks for me, which is about now)...could actually mess up my clock, to spur on the beginning of a "new" 6 weeks of battling a ####ing demon?
How long after you feel verapomil has aborted an episode, do you stop taking it?
I don't want to take verapomil forever...it messes me up bit--tired, constipated, dizzy, unmotivated
Any feedback would be phenomenal
For anyone new to this condition--- stay positive. I know it's tough when you're in the thick of it and you're on a total of 40 hours of sleep deprivation over the last 5 weeks...but stay positive. Know this--- everything happens for a reason. I believe I suffer from this, so I can appreciate everything that's good in life, just that much more, once hell has passed. And we only visit hell......so don't do anything stupid that may put you there permanently. Get help, be kind (I know it's tough when you're in the shit times) but be kind. Most people don't understand what this is, so don't hold it against them. It's not an easy thing to imagine--- a hot poker searing and pushing your eye out, when it's labelled a "headache". So help them understand, be patient and know it will pass.
Cheers everyone, and thanks for listening.
Hi Spida,
Sorry you're here but glad you found this place... There really is something about knowing that you are talking with others that understand what you are going through. I myself am not at a place of experience to offer much in the way of feedback as I have only been living with CH for about 2 years and still feel like I'm walking around blind most of the time. I can say that you hit the jack pot in finding this site though:) Lots of awesome guys and gals on here with mucho experience, more than helpful info and humor to boot! Wishing you pain free days!!!
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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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7 minutes ago, xBoss said:
Yeah, I just feel like I'm living in a right handers world and just different. I guess it ties into my angry at the world bit I dunno. Anyway, yeah it's def what you make of the time between. Coping, managing etc. It's not fun. I try to use shrooms for both busting and therapy.
I totally get it. I am a Debbie downer quite often even without realizing it (everything just comes out that way). The struggle is real that's for sure.
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5 minutes ago, BoscoPiko said:
Lol Spiny !! I tried believe it or not.. I listed it as necessary medical equipment and the tax man said sorry charlie...
And yes we paid for the stupid thing in November of 2020! The only bright side to it showing up as we are finally cooling down is that it functions as both a spa and pool so when it's cold you can just heat it up. Down side is I have no idea how much that will cost to keep it hot....
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Here is a small pick hopefully that I've cropped down enough...
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5 hours ago, spiny said:
Drat! I clicked on the dots and downloaded and just got sound.
I just thought that it would be my luck to have it arrive this week when the temps are beginning to tank for fall! I suspect that where you are it will get year round use if the air is fit to breathe!!!
Some of us, pre O2, have been known to throw ourselves down in the snow to kill a hit. Or huff the air from the AC vent in the car. You now have a pool to jump into!!
You know, and kill that hit with exercise. So, the question is, can you deduct it as a necessary medical expense?? Lol Spiny !! I tried believe it or not.. I listed it as necessary medical equipment and the tax man said sorry charlie...
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25 minutes ago, Bejeeber said:
And while we're at it, I'm hoping you'll find some truly significant relief and can just kind of forget this load of CH baloney pie.
I bet that's an awe-inducing movie of some precarious pool-over-house dangling you posted, but unfortunately it's not working for me so far, so I can only let my imagination run cuckoo.
Aw poop! I just checked it and your rt.. not working for me either.. it was cool however.. big 74 ton crane and blocked off road (cool neighbors we let know ahead of time all taking picks of a pool in the sky) anyhow it was a good day on a sad day for the world..thank you for talking to me..maybe if the 2mg limit would get increased .. but then again lots of maybes eh...
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On a happy note... I had some life for 2 days between clusters f. Had a excercises pool Crain lifted over my house that I've been waiting for since November of 2020 on Friday and all went well. It was a little harry but how fun would it have been without a bit of a scare ..
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2 hours ago, BoscoPiko said:
Yes as you can see by my post I struggle with happy. I don't understand the term left hander? Anyhow appreciating what you have is a good thing.
Did you mean that you find yourself aquard? By the " left hander term" idk.. I'm all kinds strange. Maybe you did maybe you dident. All I can do is look from the outside. I guess what I do think I know is that anyone with CH is a champ for still being around. I have struggled for much less time than most on here and I'm hoping that maybe I'll get better at handling it like some of you on here. I've probably surffed the forums a bit much since finding this site and maybe not I'm still just walking around blind IMO. This it hard and I suppose I'm just doing what I can to coap, stay sane and talk to people like me.... I've asked myself a bunch of times why I couldn't have been in the 1% of folks that passed the hardest test known to human kind etc. But it really never made me feel any better. I did love and will hold onto something Spiny said "life is what happens in between the clusters " that comment hit me and as much as it stinks it makes sense for where I'm at in my life...
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3 hours ago, xBoss said:
Happy is hard. I'm a mad at the word left hander with CH for almost 23 years. I guess after a long period of time it just becomes acceptance. Especially after multiple goals and dreams get crushed by CH. I still appreciate what I have because it's all relative.
Yes as you can see by my post I struggle with happy. I don't understand the term left hander? Anyhow appreciating what you have is a good thing.
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2 hours ago, Ganuchi said:
As far as how to stay happy on days like today (September 11) I realize how fortunate I am. CH may be AWFUL but when we consider what others went through on this fateful day our own ailments seem less important.
May God Bless America
Yes today is a good reminder that even with this monster in our head, there are worse things and fates indeed.
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28 minutes ago, lp3 said:
Has anyone noticed that if you are in cycle and you accidentally hurt yourself that your clusters go away until you heal. I have had this happen to me twice. I am not advocating self harm btw.
No but I have noticed that doing nothing keeps them around longer. For instance day after yesterday I had a bad one started at 10 in the morning and I had tried everything... Around 9:00 pm my cat got out and spikes were still coming, I had already taken the max medication so I grabbed a white claw all kinds of angry! I know they say don't drink and don't smoke, don't burp or fart sideways … once I got up and got moving and heart thumping spikes went to bed as did I shortly after...
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3 hours ago, Celtic Cluster said:
They really are, Shaun. After further reading it could very well have been slapbacks that I was suffering from. I couldn’t manage the 5 days in between doses and fell back to the odd injection as the pain and amount of headaches were too much. I’m taking it day by day now but have finally managed some good sleep the last 2 nights.
I too am a huge advocate of O2 and announce that at every opportunity.
Do you have a link to this O2 video you guys speak of please? I can’t seem to find it.I messaged you the video. Hope you are doing better...
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9 minutes ago, Ganuchi said:
I agree with Fun Times that some days just suck. I was having a good day yesterday…..even got home from work at a reasonable hour for a change……decided to do an OnDemand yoga……remember about 5 minutes of it before I just started rolling around my living room punching the carpet and screaming……must have passed out because came to on my yoga mat a while later…you just never know sometimes
The Benadryl might really help you BoscoPiko……I think I was triggered by our weather beginning to change already here (opposite of you in CA with your wildfires) in the Northeast corner
Keep up your D3 and pray for some relief……
Jeesh Ganuchi! I'm sorry. That sucks butt! Seems like just when we think we have a minute to be ok or when we are on the rt track. KA POW....Maybe today will be better huh? I am going to stay on the D3 as after all what could it hurt???
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7 hours ago, FunTimes said:
You can also try adding Benadryl 3 times a day and 2 at bed time. I would also down a 5hr drink at the start of the O2 to give it a little boost.
Some days just suck, I had one the other day for no reason other then I needed to be reminded of how much fun clusters can be!
Yea cause who would ever what to forget about this stuff...LOL. I did drink some strong coffee prior to the o2 remembering Spiny's suggestion in a different post.
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10 hours ago, snugz365 said:
are you taking a loading dose and all the co-factors?
if it's not working for you (yet) maybe try upping the d3 intake.
Batch even suggests 100.000 as a loading dose for a week.
10 hours ago, snugz365 said:are you taking a loading dose and all the co-factors?
if it's not working for you (yet) maybe try upping the d3 intake.
Batch even suggests 100.000 as a loading dose for a week.
Hi Snugs,
Yes I initially started out a 150,000 IU with all co-factors but my first go round I tapered down to quickly. I restarted with a even stayed on few extra days before going to the maintenance levels. That's why I was wondering if it jut takes a bit longer to get into the system..
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Sorry for all the edits been trying to type with a banger going on...
Just an Idea
in General Board
Posted
You are very kind I have all the plans of getting back in the saddle... (pretty sure that's what you meant)