BoscoPiko
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Posts posted by BoscoPiko
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2 minutes ago, jon019 said:
....oh i would love to see this but i keep getting a google 404 error (multiple pc).....is it available anywhere else @spiny?
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
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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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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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7 hours ago, Celtic Cluster said:
Guys please help. I’m 12 years into Clusters but this period has been so long and so intense and I am all out of energy, methods and will power.
I have access to everything that is recommended on here (never had any success with verapamil and prednisone). I just can’t find the right balance to get any relief. Plus I can’t manage the 5 day gap with no sumatriptan as the oxygen isn’t able to fight it alone. My period/season bizarrely jumped to summer for the first time and my current headache schedule is 2 during the night and 1 in the morning (with other less concerning sporadically triggered attacks).
I need to get some rest so if anyone has a trick for the attacks that occur in the middle of the night that would be a start please. I’m using taking one whole tank of oxygen most nights and it can’t be good for me.
I even have Emgality here that I’ve never tried along with a Sphenopalatine Ganglion Block which may have to be my next move if you guys recommend it.
Thanks a lot guys.
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!
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5 hours ago, spiny said:
Well, the thing that you will find with Clusters, they will morph over time for NO reason. Just when you think you have your triggers and such figured out, it will change. Shrug. So it goes and round and round and repeat.
Allergies seem to contribute to CH. So, allergy season is hard. Benadryl at night is a help for many. Hang in there, you will figure it out. Better than the doctors can do it for you. You alone will know what sets your head off. For me, the biggie is low pressure weather fronts.
I strongly recommend the D3 regimen to all CHers! Vitamins are great!!
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..
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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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7 hours ago, spiny said:
Many have observed that heavy pollen can bring on or extend a cycle it seems. In addition, many can't take certain odors without getting hit: gasoline, paint products, perfumes. It depends on the CHer.
So, I would say yes, there is a good chance that the environment is the a big part of the problem for you currently.
7 hours ago, spiny said:Many have observed that heavy pollen can bring on or extend a cycle it seems. In addition, many can't take certain odors without getting hit: gasoline, paint products, perfumes. It depends on the CHer.
So, I would say yes, there is a good chance that the environment is the a big part of the problem for you currently.
Thank you for the response. Just seems strange that this one is not over yet..
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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
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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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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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??
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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.
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1 minute ago, BoscoPiko said:
No I stand corrected it was not a demand valve I apologize.. It was just a regulator... Sorry!!
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!!
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18 hours ago, CHfather said:
eBay is a frequent source. Not always there, but sometimes. We got ours there. It's a very nice thing to have, but . . . I'll be darned if I can see how demand valve conserves any significant amount of O2. We've had this discussion and I've been outvoted, but I still don't see it.
I've never seen demand valves for sale at amazon. Are you sure that's what you got? Do you have a link in your "My orders" section? I have to admit, here again, that I have always understood that medical demand valve systems could not be obtained in the US without a prescription, unless at a "black market" site like eBay. Happy to be shown to be wrong about all of this.
No I stand corrected it was not a demand valve I apologize.. It was just a regulator... Sorry!!
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2 hours ago, Ganuchi said:
It was awful……we say we have seen each other at our worst……he sees me through CH and I got to sit with him for 12 hours with his face in two and then the three subsequent surgeries to fix him all up
The plastic surgeon told me all he could say was that he had never seen anyone so jacked up!
Wow. So glad that he pulled through and that you have one another!
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16 hours ago, Ganuchi said:
My husband fell at work a few years back and literally split his face in two…..they had to put needles in his nose to do the original sew up before the rhinoplasty to actually rebuild his nose/face. He was SCREAMING from the pain of needles in his nose. It was awful I don’t think I could bring myself to go for it
Oh my! Sorry he had to go through this!!
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11 hours ago, jon019 said:
.....aint no woosies in clusterville, it's an impossibility...i wasn't calling you one....just relaying what motivated me. guess ya had to be there, but coming from a tiny Russian blonde physician, with a twinkle in her eye, i was actually amused enough to be distracted. probably her design...
...my main point was to share, since clusterheads are the bravest people i know .... somehow/someway we find the strength to do what needs to be done...
I didn't take it that way. But I can be one at times:) I appreciate your share and perspective on things!
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3 hours ago, dmlonghorn said:
Yes! My journal is littered with "spike" and then I rate the pain level of each spike. I get them pretty much daily, 80% of them are level 7 and they're always on my cluster side (right). I do get spikes on my left side, but I can now firmly attribute those to barometric weather changes - they mimic the ch spikes but they're not as sharp.
There's not much I do to treat them as they come and go so quickly. The constant mind-fuckery is almost worse than the pain with these things. If I get a spike followed by pressure, that's when I know shits about to go down and I'll ready the O2.
I'm training for endurance competitions, so I run a lot - I suspect it helps to some degree, but I believe it's a combination of dosing and the D3 regimen that prevents these spikes from becoming screamers.
So I'm not the only one then.. Yes I hate the mind game and agree that at times it is almost worse as I feel like I have to stop what I am doing because I am unsure if I going to hell for real or just spiking? Still trying to figure this fkr. out . I have started the D3 and do see improvement in the intensity of the spikes. Thank you for the response
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2 hours ago, jon019 said:
I wouldn't have been able to do the the b shots on my own I commend you. I'm a woosie!!
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2 minutes ago, BoscoPiko said:
ok I suck I suck I suck soo much .. why can we go to space but no one can swap hypyos out yet ? Can I just have a new brain already please and thank you!!! They say defund the popo how bout defund the pharma!!!!!! errrr all kinds of mean!!
Sorry Jon that was not very kind of me..
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1 hour ago, jon019 said:
....and very much related....is why, besides the vulnerable feeling, i always hated being witnessed while getting hit....and why i consider our beloved supporters as having it worse than clusterheads....
.....very little to offer re needles ( i still have to keep my eyes closed). but at one point had to give myself B-12 injections. HUGE needles that have to go into muscle. the very first time took me 2 hrs sitting on the edge of the bed....for many months after it was up to one hr. eventually got it down to a couple of mins by using the admonition from a young lady doc, who told me: "don't be such a woosie!"......and the realization that sometimes there.just.aint.no.alternative.....
ok I suck I suck I suck soo much .. why can we go to space but no one can swap hypyos out yet ? Can I just have a new brain already please and thank you!!! They say defund the popo how bout defund the pharma!!!!!! errrr all kinds of mean!!
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On 8/20/2021 at 3:12 PM, adhura said:
Saw in the video how demand valve can help conserve Oxygen. Cant figure where to buy it in US. Cant find anything online. Anyone bought it ?
I don't like to use Amazon much but I was able to buy one on there for about $30.00 bucks that goes up to 25.
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Trying to post the link again... I know just talking to at the moment but sometimes I work things out that way:)
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1247229527
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Now this most likely wouldn't do much for the men out there with CH as I don't think it's possible to trick a male body into thinking its prego but...IDK. I did see a different site where a gal with CCH had started using it and had some pretty good results. I wanted to post the link here but it seems like when I try and post a link or even an emoji I get a message saying I am posing an invalid value? Anyhoo....
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43 minutes ago, Ganuchi said:
It was actually a new experimental treatment specifically for CH that I was reading about that showed promise for those willing to endure it…..
If you google “Botox for cluster headache” you should find the article from “medical daily”…..tried to put link but it wouldn’t work (probably user error….LOL)
Oh I see. And no I don't think I could do the needle up the nose.. That sounds awful!
Maybe The D3 Takes Longer To Kick In for Some?
in General Board
Posted
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...