BoscoPiko
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Posts
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Posts posted by BoscoPiko
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6 hours ago, Snowflake said:
then hold the O2 for a few seconds until the bag fills again (since its on 8 liters per minute it give me time to hold the oxygen in my lung
If it works it works and that's what counts. So happy to hear you're feeling better!
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I do have to say though... When I think of the "Cluster Bunny" it looks a bit more like this....
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8 minutes ago, jon019 said:
.....ah yes, mamma don't allow no smart ass cluster bunny here....
Instant smile rt here
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36 minutes ago, Bejeeber said:
What Jon said - especially since @BoscoPiko could easily be deemed LLTELASN (least likely to ever leave a snide comment).
Thanks Jeeb.
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9 hours ago, jon019 said:
VNS works for some...worth a try
True indeed. And now that I'm thinking of it, I don't think the VNS is available here and comes with some sort of subscription? I'll check it out but may pass on it since other efforts are working for now. I would like to try growing because it looks fun and I would love an extra back up but I can't buy here in CA from most of the places that I found seemingly good kits?
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I seriously wasent trying to down play or make fun of vagus nerve stimulation. I was just being me. I've tried the cfaly and I like the distraction. It hurts a bit but nothing like an attack...then again it's been none other than a very expensive distraction. I'll purchase the vagus nerve stimulating mechanism but doubt it will do much more than my Sonicare toothbrush.
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1 hour ago, MattyChe said:
Has anyone tried humming or load gargling to stimulate the vagus nerve?
No but I sure have done a bunch of cursing along with some unspecified sounds
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1 hour ago, Bejeeber said:
Like your doc could have gotten his CH and his HC transposed.
That would at least make some sense! Good observation @CHfather
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I would be interested to know what this PCP believes is effective for CH????
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42 minutes ago, sparklegirl said:
I had COVID in June long after the initial vax (J&J) and booster (which I got in the first round last Fall). Since getting COVID I’ve had a bunch of weird immune response issues, one of which is CH. My take on it based on my experience is that it was COVID that really screwed things up because I had no issues with the vax whatsoever. Either way, here I am fighting this monster again. Thanks for the well wishes. May we all be pain free forever!
Thank you for the reply and yea I have read enough posts on here to somewhat conclude that COVID somehow (either by depleting the system or just beating the body up) seems to open the door to CH.
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19 hours ago, sparklegirl said:
I have also been in remission for 4 years and then contracted Covid in June and am now in the beginning of a cycle. It has started out mild, similar to what you describe. I had no issues with the vax or the the booster.
Hi Sparklergirl,
Did you have COVID prior to the vax or just after? I'm just curious because if you did not have it prior then it could be possible that the vax weakened your immune system making you actually more susceptible. I know it's nuts to think that a vaccine meant to prevent and protect us could backfire in such a way
Anyway I hope your cycle ends sooner than later!
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5 hours ago, Shaun brearley said:
Tried to sneak in a little friend to keep daughter company in hospital ,but hospital said NO
Lol Shaun your 2 awesome!
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On 8/20/2022 at 3:45 PM, Tony Only said:
meet a fellow CH'r "in the flesh" soon
I suppose it's odd to many "the want of meeting a fellow cluster head". I think in many ways it's like a child with a deformity meeting someone with a similar deformation for the first time. Seeing that your not the only one. In some ways, I think this gives us strength in knowing that someone else is carrying the same load that we are and that they too are navigating through rough waters. At times I have felt guilty for this want, as it would mean that someone out there was as miserable as me at times. Finding this place has given me eyes that see others like me and that has made a huge difference.
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One of my warning signs is opposite side pain. The pain varies from spike like pain that mimics my cluster pain to a burning sensation that makes my skin crawl. I've never had a full on switch of sides but definitely opposite side cluster related pain. I'm a rt sided banger but i suppose it’s my diplomatic side wanting to be fair...
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39 minutes ago, Snowflake said:
Hi
I have a question regarding the 12 day D3 50 000iu "reloading" dose.
I checked my levels on Monday and it did drop. Infact it is all over the place.
I just wanted to know whilst doing this, should I lesson the amount of water intake per day for better results instead of drinking alot of water and pissing it down the toilet. Or does 2litres of water help absorption along?
Thanks
You might try the drops so you can take them sublingual style for better absorbing. Just an idea...
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1 hour ago, Chloe Chriselle said:
daytime attacks are minimal but really getting hit with the nocturnal attacks.
I'm glad your going to check out the full Monte. I'm so sorry about the nocturnal hits and I can't speak much 2 them as I've only had 2 short lived attacks during sleep. Both were warded off with o2 and some coffee but I sure don't wish night hits on anyone (I thrive off of sleep).. and feel like it plays a huge part in health. Just don't give in or up.. carry this as long as possible because life is a gift!
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10 hours ago, Snowflake said:
All my hope on the D3 was gone
Hi Snowflake,
I know you addresses this to Batch and hopefully he will see your question soon. I just wanted to tell you not to give up on the D3 regimen just yet. I started with the original D3 reg as provided by Batch but had to start doing the "full monte" form of the reg that adds in a few extra supplements and increases dosage levels of some supplements for certain durations of time. The original D3 protocol really helped to tamper down the intensity levels of the hits but I never reached cessation unless out of cycle. I had to increase the levels of quercetin to 2,000 mg a day along with 2,000 mg of curcumin, 2,000 mg of resveratrol and 200 mcg of super selenium complex & vitamin E. I had already been on the COQ10, so I just kept doing that. What I’m saying is that you need to keep tweaking the protocol until you find what your body requires. I have had so few CH attacks in the past 8-almost 9 months now that I am still in awe of these natural supplements. I have also been doing RC seeds every 3 to 4 weeks or directly after a hit but I tend to feel like the supplements are doing the majority and just get an added boost with the RC on a maintenance level. Keep working on it and hang in there!
Quick Edit:
I forgot to mention that prior to this regimen, I had only ever gotten 3 to 4 months off ever!
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3 minutes ago, Bejeeber said:
Ooh nice find - gonna stick this at the top of my to watch/listen to pile, considering the subject and the interviewee.
It's pretty darn interesting makes me think about micro dosing just for health purposes.. And yea I'm not a huge fan of the interviewer but Paul is a pretty cool dude..
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I found this pod cast to be super interesting! I know not everyone is a Joe Rogan fan but what Paul has to say about micro dosing, macro dosing and analogs was really interesting!
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29 minutes ago, Shaun brearley said:
@BoscoPikoLet hubby drive whilst you do a busting session . That 31hours drive will become a 15hours drive for you
I wish! It's a bit hard to get away owning and operate a small business. Even our minimal trips to our Truckee home require us to take work with us. Shoot now that I'm recalling it, my hubby worked on our honey moon
I'm not complaining as we have been blessed to have so many projects even during an economic downturn.. I remember 2008-2009 when we had to lay people off and that was awful. I have never met a fellow cluster head and often wonder what it would be like to finally meet someone in person as bat shit crazy as me -
I would love to go but it's around 31 hours away from me via car
Sure would be neat to meet the ever elusive CH species...
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2 hours ago, CaptChaos said:
Thank you everyone for the advice, I appreciate it. I was able to find some non-caffeinated ginger tea and I also have a jar of powdered ginger I can tinker with. Hopefully I get lucky with a night of remission.
Sure pulling for ya. CH is no fun at all. I hope your oxygen arrives with a quickness! Stay strong!
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I'm not big on the taste of ginger but it works pretty well for shadows and to some degree I think it helps keep the cluster bunny at bay with higher doses (2,000 mg or so).
I use this product on a daily basis, two 500mg am. and two 500mg pm. I eat a keto friendly yogurt prior to the am dose as they are a bit hard on the stomach. You should be able to pick this up at a local supplement shop or at least something comparable.
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26 minutes ago, Shaun brearley said:
What more can I say !!!!!!!
You must feel so good to see her awake and alert even a little smile on her face!
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Connection between cluster, mast cell activation and Ehlers Danlos Syndrome?
in General Board
Posted
Seriously trying not to overthink this..check 5 of the 7. But then again I could just be getting old minus the hyper flexability and constipation...