BoscoPiko
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Posts
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Days Won
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Posts posted by BoscoPiko
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15 minutes ago, Baby Moth said:
revolve around will this get worse?
Hi BM,
CH can be really terrifying. As for will it get worse the answer is sometimes yes and sometimes no (not much help on that one)..
17 minutes ago, Baby Moth said:Is there any way to know if it will still give me breaks? Or will it get more frequent?
Sort of the same response as above..
18 minutes ago, Baby Moth said:Can it go from episodic to chronic?
Unfortunately yes.
19 minutes ago, Baby Moth said:Is there anything I can look look into right now that is most helpful?
Yep.. That little blue banner at the top of each forum page "new users please read here first". There is a bunch of things you can try to help you prevent them from happening and abort them when they happen. I am relieved to here that you received o2 it really can be a game changer. There is a plethora of information on this site from long time sufferers as well as those with family that have CH. You can even find videos on 02 breathing techniques, proper 02 mask types and flow levels along with all kinds of tips and tricks. I would start with the blue banner, then reading up on the D3 regimen (you will want to start this reg ASAP). Cruz this site in and out, you will find help here! My last post was about being scared my clusters were coming back so I really understand the fear as do all of us. CH is hard but It's going to be ok!!
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1 hour ago, Bejeeber said:
You got that right @BoscoPiko, and it's also the real world experience of some CH'ers here, one of whom described it as something like a "reverse survival instinct" that gabapentin can spur. It is weird indeed, and can be experienced as not having any sort of "I want to kill myself because I can't take it anymore" component, but more like a calm and nonchalant "it would be very right to turn the lights off permanently right now" feeling, with no emotion.
That said, I'm one of the few and far between whose CH has benefitted from the 'ol gabby, where it cut the number of attacks per day in a raging high cycle in half for me, which in turn made it possible for me to abort every single attack that did break through, and that was a really big deal.
I'd advise anyone on the gab to watch out for the weird thoughts/feelings, be prepared to recognize them as the drug talking, and to fully ignore them.
Wow @Bejeeber great info!
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I also include 1,000iu (500 am and 500 pm) of COQ10 which was mentioned by Batch at some point but I can't find the thread at the moment
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Here is a copy and paste from a previous discussion about it on here. It includes all of the original regimen plus this:
***We have also had a number of CHers respond to a collection of supplements with antihistamine properties I call the Antihistamine Full Monty. It includes 3 grams/day each of Turmeric (Curcumin), Quercetin, Resveratrol and Omega-3. It also includes 250 mcg/day Selenium, 5 mg/day Melatonin (taken at bedtime) and 8 grams/day vitamin C. You can also add 500 mg.day NAC.
I buy the bulk powdered vitamin C in 1Kg bags and stir two level teaspoons in 8 oz of water then take sips all day until it's gone by bedtime. It tastes like unsweetened lemonade.
You can taper the first four supplements to 2 grams/day after a week to 10 days fully CH pain free. I'd stay at 2 grams/day on the first four supplements for at least a month. Dealer's choice on tapering further.*****
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4 minutes ago, Luis said:
Any other info on gabapentin?
Hi Luis,
Sorry the cluster bunny is back. I don't have much info on gabby other than to say it did not work for me. All it did was make me super sleepy while the beast raged on. You never know though, what doesn't work for one may work for another... I do recall someone on here (I think it was @Bejeeber) mentioning a study that showed an increase in suicidal tendency's not that I think you would have an issue with that especially with just trying it out. By chance have you tried the "Full Monty" D3 reg? I had to switch over from the normal regimen a while back due to allergies and it has really helped.
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Hey there CE,
The pain can certainly be isolating which can lend a helping hand to allow loneliness to creep in. Having supportive family like you do is so important (as you realize). Lot's of us on here to talk with so no need to allow yourself to feel so lonely prior to popping on here. Sometime just reading on here and talking to others that understand what your going through can really help keep the spirts lifted.
1 hour ago, CursedEyeball said:sending them to google to find an exorcist
I see by this comment that you have a wonderful sense of humor
Trust me laughing at this sh*t show can be a saving grace of sorts. I hope you get your o2 and find your way out of this cycle sooner than later.
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I would say start now on the loading dose and test later as a majority of the regimen is pretty gosh darn good for all of us and not considered harmful. (This is just me). I have a tendency to air on the side of "please give me relief " verses the clinical approach. Anyhow as funtimes suggests you should have levels checked but if it were ME I would start sooner than later.
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1 hour ago, Bejeeber said:
OK, this has also partly been about finding some way to interject the term 'ShaunPiko' into the conversation.)
LOL Jeeb.. I caught that..
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Agree with @Shaun brearleybut will add the D3 Regimen as well.
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10 hours ago, CHfather said:
The name of it is on the tip of my brain
Was it the register your journey one?
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4 hours ago, Nishant Kumar said:
Any pointers who can I talk to?
You don't really need to actually talk with anyone. All the data you could want is here on this one awsome sauce site!
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1 hour ago, Bejeeber said:
"I'M A CLUSTER BUSTING MICK JAGGER, MOTHERF**KERS!!!"
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2 hours ago, Bejeeber said:
Please everyone take this survey thang.
Took it last week. Agree that we all should take it. A nudge is a nudge
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2 hours ago, Shaun brearley said:
BLESS HER !!!!! , she looks great . Got to be fair Dad looks like he's having fun @BoscoPiko
He was! We were both just so happy that she was finally willing to try. We've taken her to the lake several times since she was healed up but she wouldn't even get out of the car unless we made her and wouldn't touch the water
We just went again today and she loved it! Our biggest goal is her remaining quality of life. She deserves a good ending as she has brought us so much happiness! I know you know what I mean @Shaun brearleybeings your a double dog dad
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It's just a "help um up" harness". She swam like back in the old days but you can see dad never left her side
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I'm excited so I figured I would give a little update on my Abby girl. It's been a long half a year since her surgery with lots of highs and lows. She's an old gal so surgery was sketchy to begin with. Options were non existent seeing the tendon was severed, so surgery it was. She pulled through and got stronger with each day, started to stand and walk about quite well albeit with an orthopedic boot. She has adjusted to the boot very well which is a good thing as we recently learned that she will be in it permanently. They fixed the area that was severed but the rest of the tendon was stretched to badly to allow her to be without the boot for support. She is the goodest of good girls! Today she trusted herself to do her favorite thing of all with the boot on.. God is good!
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Well it sounds like they gave you an oxygenator ( a machine that pulls in outside air not pure o2 ) 10lpm wont help a cluster head out much and I don't know that you can retrofit this machine).. Maybe some of the more versed on here know if it's possible. I suppose it's better than noda but not real sure how much. Maybe ask your Doc for an 02 tank script. Seems possible if they scripted you a machine? Anyhow Lloyd maybe tell us a bit more about yourself. What you take as a prevent, what you were diagnosed with what you have done in the past to skirt the beast etc. You will need pure 02 with the ability/regulator to increase 02 to a minimum of 15 to 20 LPM. Lots of resources on here for that. Sorry you are not well! Respond when you can with better detail.
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Thanks Shaun!!
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Well I think it's official. I went from no more than 4 months off to a full YEAR!!! I know things change and the body is good at becoming immune but a win is a win and I feel like a winner! I'm even making chicken for dinner!
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24 minutes ago, Bejeeber said:
Okay HERE WE ARE at July 3rd - what 's the verdict @BoscoPiko, did we make it a full year without an attack?!
I'm practically assuming so.
In light of OldArn's bad news/bad results yesterday, some good news is sorely needed, and I figure that is your jam today.
Yes, here we are and so far so good! I feel good and am void of any warning signs... I think I finally made it a full year (never achieved this in all my CH life)
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2 hours ago, BoscoPiko said:
Your rt @Bejeeber. Jinks is silly but I'm still learning to navigate..You are a good friend and I appreciate you! I'm making a pot roast (it's taking forever) and getting ready for a movie with my best friend.. no thoughts about Jinks (thanks to you and all the awsome sauce folks on here)..Beastcapade free! I'll say my prayers!
Oh and hi to my amazing friend @Shaun brearley who let's me vacation bicarously through picks of his amazing home land job. Stinker gets to tote folks around to some of the most beautiful places in the world as a job.. gets paid for it! Jelly!
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Your rt @Bejeeber. Jinks is silly but I'm still learning to navigate..You are a good friend and I appreciate you! I'm making a pot roast (it's taking forever) and getting ready for a movie with my best friend.. no thoughts about Jinks (thanks to you and all the awsome sauce folks on here)..Beastcapade free! I'll say my prayers!
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Thanks @Shaun brearleyyour 2 kind. Oddly enough after my last response to @Bejeeber I got a notice from Kaiser and Sutter (my insurance plan providers) telling me that my script would no longer be covered by my insurance and that my script was not being canceled but I would have to foot the bill as my BMI (body mass index) suddenly did not qualify for coverage. As a consolation they advised me where I could have my script filled at my own cost of $1k per 30 day supply. I'm not as upset as I thought I would be as I've learned to have a backup plan for all of these pharma/insurance provider shenanigan's. I suppose I am just bummed that I can't experiment a bit longer. I've had such great success with adhering to some of the methods and means provided to me via this site that I don't care as much about the denial of coverage. (They can go suck a cluster bunny egg, maybe.. hopefully choke on it 2)! Anyhow I am nearing the one year mark ATTACK FREE! I pray I am not jinxing myself but at the same time I am 2 grateful not to share the news! My last attack (only one mind you and not a cycle) was last year on July 3rd. I would be lying if I said I wasn't scared. At the same time my heart swells with pride over the help and much needed support that I have received no where other than here! All of you are the very best!!!! Happy 4th!
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1 hour ago, Bejeeber said:
No shadows on the days on? Sometimes it seems like the real use for most meds out there was discovered inadvertently when it was noted that they alleviated some unanticipated thing.
Thank you for discovering that Semaglitude should be investigated for off label CH prevention, trials starting immediately
. You should get credit, royalties, and they should change that ugliest of names to 'Boscofixya' or similar.
LOL.. Well my train of through is the lowering of blood sugar? Not sure if that makes a difference with CH or not. And yea I just realized after reading your response that the name is sorta gross
New cycle
in General Board
Posted
Poop..early and often.. eat first even if it's just a yogurt..