BoscoPiko
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Posts posted by BoscoPiko
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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!
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Just curious if anyone has had any experience with this hormone and if it has helped them or not? I seen some posts on here about how some women become CH free when prego and it made me wonder about this old fad diet hormone people used to take? If I recall correctly it tricks ones body into thinking its prego? Just wondering?
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7 hours ago, Ganuchi said:
As another chick in her 40’s I considered the Botox too, but my fear of needles outweighs the potential benefit. I did read recently about success with Botox for CH but not traditional Botox. Apparently they stick the needles up your nose to hit nerves in the head……the thought turns my stomach so I would probably have to be knocked out to even consider that……..but for those less squeamish it might be an option
Hi Ganuchi,
Are you sure about the up the nose thing? I looked it up and this is what I found: The guidelines recommend Botox is given as a series of between 31 and 39 small injections. These are given under the skin or into the muscles in and around the head of the forehead, above the ears, and into the neck. The person doing your treatment will have been trained to provide Botox for chronic migraine. (Now mind you this was a not an in depth search just a quick google). I too am super scared of needles so I don't know that I could last through the series of pokes but I do tell myself that I've made it through a 6/hr. CH so maybe I could but could I survive all that spider poison ? IDK...
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15 hours ago, jon019 said:5 hours ago, Ganuchi said:
As another chick in her 40’s I considered the Botox too, but my fear of needles outweighs the potential benefit. I did read recently about success with Botox for CH but not traditional Botox. Apparently they stick the needles up your nose to hit nerves in the head……the thought turns my stomach so I would probably have to be knocked out to even consider that……..but for those less squeamish it might be an option
Wow ok then.. I did not know that...And that's a bit of a game changer.. I think that changes things from a maybe to a hard no.....
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On 5/22/2021 at 10:34 PM, jon019 said:
....good luck! years ago i was the patient of a research neuro that did early studies on botox for migraine. she told me they were delighted with results. had asked to be included in the study....cuz why not?.....she told me "oh sorry, it doesn't work for CH". i sadly smelled money as the market for M beats CH....sigh. keep us informed, i have heard of it helping some of us.....
Uff.. I know this is old but I was just set to try this out on the 28th not the actual just a consult.. Just because.. Well because I'm a chick in her 40's and I thought well maybe??? Plus if a few diapering wrinkles resulted too.. uh ok cool.. Don't care enough about the wrinkles as I hate needles so if its a no go.. its a no go but you did mention different folks different folks? So maybe?
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1 hour ago, spiny said:
Oh, I'm a girl when it comes to coffee. Leave out the sugar if need be, but I want my cream in there!!
That's ok too! Tell me I have to go to the dentist and watch the crocodile tears flow:)
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Just now, BoscoPiko said:
Agreed!
About the coffee needing to be black to be coffee!
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3 hours ago, Ganuchi said:
I too get “spikes” which I consider shadows which will jolt me out of my seat. I will generally just close my eyes and take some deep breaths for a few and then continue on with my day. Sometimes it’s a signal of the Beast awakening other times no. I have also experienced the odd side switch too.
And I drink black coffee too…..if there’s milk or sugar in it then it isn’t coffee in my book…….LOL
Agreed!
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Dident
Just now, BoscoPiko said:That's strange... I responded to this but I don't see it here now.. Any how thank you Spiny for the response. I know I'll never get used to the pain but I am somewhat used to the side I get it on so when I get one on the other side it is scary! I love coffee and my husband thinks I'm nuts for liking a good old americano most of the time just black. I'm not sure if my computer is on the fritz or if it's me or both? Anyhow I sure am happy to have found this site. Everyone has been most helpful even when I'm full of mean. I did find out that I cut my D3 loading short after talking to XXX so I have re-started for a few days and have not had spikes for 2 days o (knock on wood). I am hopeful that I will make a little headway. I understand that I can't expect 100% but something is better than nothing rt.
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3 hours ago, spiny said:
Bosco, I just had my non-CH side spike today. I was a the dermatologists when it happened and it spooked the heck out of me!!
What causes it? I don't know. But I have had them before and my son gets them , but no CH. Hopefully that is the end of it! The Equinox is my cycle start time, so yea, I am a bit wigged out.
I took caffeine for it. Might not be the best choice for all, but worked for me.
ATB!!!
That's strange... I responded to this but I don't see it here now.. Any how Thank you Spiny for the response. I know
Just an Idea
in General Board
Posted
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?