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Everything posted by BoscoPiko

  1. 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.
  2. 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....
  3. Here is a small pick hopefully that I've cropped down enough...
  4. Lol Spiny !! I tried believe it or not.. I listed it as necessary medical equipment and the tax man said sorry charlie...
  5. 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...
  6. 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 ..
  7. 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...
  8. 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.
  9. Yes today is a good reminder that even with this monster in our head, there are worse things and fates indeed.
  10. 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...
  11. I messaged you the video. Hope you are doing better...
  12. 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???
  13. 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.
  14. 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..
  15. Sorry for all the edits been trying to type with a banger going on...
  16. 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...
  17. 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
  18. This was very well said. Thank you for the wisdom. I do imagine I am just not used to this new norm..
  19. 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!
  20. 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..
  21. 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:)
  22. Thank you for the response. Just seems strange that this one is not over yet..
  23. 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:)
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