BoscoPiko

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 ..

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...

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.

Yes today is a good reminder that even with this monster in our head, there are worse things and fates indeed.

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...

I messaged you the video. Hope you are doing better...

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???

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.

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..

Sorry for all the edits been trying to type with a banger going on...

I do believe that I was being optimistic about the daily spikes throughout the month of August... I had thought that because August was always my hell month and that because I had only suffered one screamer, that the D3 was really calming the fkr down, maybe putting him to sleep. But nope.. Round three for today and nothing seems to be working for long. 10:00 am spikes started coming on hard unlike the ones you can shrug off, got on the o2 straight away and huffed and puffed until my fingers and toes tingled with the regulator set a 25. The spikes stopped so I turned the air down to 15 and stayed on for another 10 minutes, thought I aborted it but it was back in 20 minutes Proceed to the sumatriptan (nasal) that worked for one hour and gave me a lovely nose gusher. Tried the o2 one more time it worked for a another 20 minutes. I finally gave in and up the nose one more time (2 hours after the last dose). Lasted exactly one hour and now that's the max "they" say you can take in a day. So I suppose I was wrong and that the daily spikes were indeed what they always used to be, and indicator of the return of the unwanted guest. I had thought that the D3 was possibly the reason that I was only spiking and not spike, spike spiking... Maybe it takes longer to be effective for some that others? I am taking all the cofactors daily and received an email that my blood test has been sent to the lab today. (takes a little longer with the finger prick). IDK just a little bummed that I was duped yet once again... None of you said this would be easy so there is that...

I couldent get it to work either. You can type in "hello clusters my old friend" into your browser and it will bring you to the lyrics on the cluster buster site.. no video though

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

Thank you Ganuchi

Hi Celtic, I wish I could be more helpful I just wanted to hop on here and say at the very least that it sounds like Spiny gave you some good info. (Never heard of the ginger thing so I'm going to try that) There is a good video on here that goes over different breathing techniques with the 02 that maybe you could check out (if you haven't already). Just learned myself that these lovely headaches like to change things up so maybe you need to change something up too? I know that's not much help.. Just don't want you to feel alone. Feel better soon!

Jeesh.. What a dish to be served eh.. The ever morphing brain dozer.. The D3 has been helping quite a bit. This site just goes to show you how very little the doctors actually do know about CH. Even when you look online you still see references to things like CH being male predominate and that really there are no triggers etc.. whaaa..

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:)

Thank you for the response. Just seems strange that this one is not over yet..

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:)

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?

Just curious if anyone has issues with bad air quality levels and if it has ever extended the duration of a normal cycle? I recently got started or the D3 reg and thank goodness because like in many of my previous posts I mentioned that nothing has been full blast mode. However I am continuing to get daily pain, super temple pressure and rando spikes. The spikes have spread out a bit more since I extended the high dose of D3 as I tried to taper down to soon the first time. I live here in Unicorn Land (CA) and am not far from the Caldor fire which is about 40% or so contained and has been burning since 8/14/21 (216,000 acres). The smoke has been so bad that at times it smells like I have a bonfire in the living room.. I have four air purifiers running but my ding bat self forgot to click the button that purifies the air last night so I basically had a fan running last night. Several days the air quality has been at a reading of 499 and today was a 259. Just wondering if anyone has experienced a CH cycle being extended by something like this??

The writing is great and very relatable. Cannot remember where I read or heard that a good writer can make one fell an emotion. Your writings made me feel one so. I say nice work. I like to write as well. Just poetry. Not great at it but it lets me release some of the inner torment here and there. Can't think of any famous artist that released songs inspired by CH but I would tend to think that there are most likely song writers out there that have written for famous singers with songs inspired by CH or some other enormous pain? Anyhow I really liked the songs.

I have only been dealing with CH for a bit over 2-years now and am still learning all the terminology so sorry for the miss post!! Regulator Thing- a- majig!!

No I stand corrected it was not a demand valve I apologize.. It was just a regulator... Sorry!!

Wow. So glad that he pulled through and that you have one another!