BoscoPiko
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Posts posted by BoscoPiko
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Hi Jimmy,
Sorry your in the thick of a banger session.. As for stopping the verap prior to attempting a bust depends on the dosage but i dont think it's 2 late to try. As for the D3 reg attempt with the D and fish oil only, I dont think thats gonna cut it. You really need to be on the full reg (all co factors). Is there a reason you can't take all the suggested vitamins? O2 is super important so I'm glad your getting that squared away!
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1 hour ago, Bejeeber said:
"Completely CH free" isn't what everyone on the D3 regimen achieves, but glad you've arrived there!
So true Jeeb. Unfortunately full and continuous cessation has yet to be achieved through the D3 regimen. Less frequent attacks, regular cycles and intensity of attacks has been greatfully experience from many on the regimen making it a very useful tool for any CH sufferes toolbox.
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Not sure why but it's definitely sad that it's not a common "go to" treatment. My first thought is that CH is pretty uncommon in itself so that could play a role. Then you have the very much so common migraine that the D3 protocol works for as well which makes my second though lean toward the fact that you generally cant patent naturally occurring vitamins or minerals so there is no reason (monetary) benefit for pharmaceutical companies to bother with it. Tens of billions of dollars are spent annually on migraine medications and unfortunately there are financial incentives for Doctors to influence medication prescribing.
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9 hours ago, Nikkk said:
@BoscoPiko yeah I know that sugar is not really recommended for inflammatory situations, though it seems to me that it's more about refined sugars that are an issue rather than fruits, fruits contain sugar indeed but so much less than a glass of coke or something. I also tend to stay away from cheese during cycles and whatever processed meat especially smoked ones.
My very late lunch today is: hard boiled egg, avocado, dried mango, green chilies and cashews:)
Yea I'm sure your rt about the refined sugars but like i mention it's likely all in my head
I make my own jerky so not worried about processed meats all that much but could most probably do better without the salimi and cheese. Gosh, when i think about all the things I've avoided for the simple happenstance of an attack after, it makes me feel silly (boy do i miss bacon)! Thank the man upstairs that I've never had one after going potty or my poor bladder would be in ruins lol!! Your lunch sounds good and makes me a bit hungry... Prayers for an early termination of this cycle of yours!!!
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Hi Nikkk,
Sort of the same as you. Nothing like a banger to zap your apatite away.. Lots of little bites in between the hits. Cheese cubes, almonds, salami, jerky sweet peppers and hummus etc. I tend to stay away from to much fruit because I somehow correlated sugar to an attack (most likely all in my head) no pun intended there
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5 minutes ago, Bejeeber said:
Whoa, Blonde BEAUTIES
, and so good for them to have been able to remain together like this!!
At least one of them is clearly snuggly as hell, they're both ultra squeezable, and judging by paw sizes they'll both be a couple of HONKERS.
If there is anything guaranteed to lift everyone's spirits, this is it. Hey the bad times have rolled enough, now let the good times rage!
CONGRATS!!!!!!!
Thank you Jeeb! Holy cow, yes they both came with clob hoppers for feet.. .....enormous! I'm pretty sure we just brought to future whales into our home
They have filled our house with all the things that have been missing (and then some)!
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It's been over a year since my husband and I lost our fur kids (broke our hearts indeed). My husband hasent been the same evwr since. The quiet house and lack of a reason to get outside and do something other then grind away working was taking a serious toll on his heart (I wasn't quite ready) but couldn't deny his need. We found a reputable lab breeder and the rest is history
Meet Neo and Aimon (brother and sister)I hope their picks bring a smile to your face. Wishing all my cluster friends are staying in the clear and excited for the holidays!
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Just an FYI that the link is bad. 404 not found error.
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Hi Mike,
Sorry to hear that the headbangers are back... It's always a serious bummer to read about this sort of situation. Attached is a PDF of the D3 Quick Start guide. There has been some good discussions on splitting your trex injections as most find that they get the same relief with a half dose and this method helps to reduce overuse.
There are other resources on here if you are open to less conventional methods to manage your bangers (Blue ribbon at the top-New users please read here first). I hope this passes soon!!
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I haven't gotten through all of this yet @Craigo but great write up so far!
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It makes me feel hopeful that more neurologist are becoming educated and familiar with CH. It's good progress for us bangers. Thanks for the share.
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4 hours ago, Tony Only said:
regular use and especially over-use of triptans rendering oxygen ineffective.
First I have read of this and very good to know!
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9 hours ago, Shaun brearley said:
Was that quite well enough @BoscoPiko
sorry took time to replay on holiday in Bulgaria hope you well and pain free at present
Yep yep, nice and informative
Cant complain pain wise. Hope all is well with you 2!
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28 minutes ago, DanP said:
thanks for the replys! Hopefully last night was an anomaly and it will work as it normally does tonight. Shaun- why do you say that triptans are a nightmare? I've heard that before, but they do work- at least for me- are the side effects really bad? I haven't noticed anything but have always been careful to not use more than once a day.
As much as I want to reply to this I'm going to wait for @Shaun brearley because he explains it quite well.
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I haven't read anything about triptan use reducing the effectiveness of O2. Are you using the same provider? My first thought tends to want to lean toward a bunk tank or possible wear and tear of your existing set up? I'm sure you know the basics of O2 usage (suggested LPM's/mask type & breathing techniques etc.) but maybe it's time to change up your intake method? I've had many discouraging and maddening experiences with O2. Some that included me being convinced it just didn't work anymore and some where I was sure it caused the attack to ramp up. In the end I discovered a few things, some of which you mentioned (the sooner the better), the breathing technique that worked last time is not guaranteed to work this time and a quick gulp of something caffeinated prior goes a long way.
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17 hours ago, Bejeeber said:
Just spotted: A quick response Avatar update, with DOUBLE BARREL KITTIES - both shoulders!
All is suddenly sooo doubly right in the avatar world, proof that AI can indeed be used for good.
Double barrel meow meows!!! All is rt with the world now
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4 hours ago, CHfather said:
Aww big sigh of instant relief! Fabio's cool but Fabio with sholder kitty.. 2 cool for school.
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3 hours ago, CHfather said:
Just as an aside to my post above, I have been using AI lately for complicated work projects with amazing results. If you haven't messed with AI yet, I'd suggest just going to ChatGPT.com and using the free version. I had pasted an image below, but it doesn't seem to show up. I asked ChatCPT to take a photo of me that I supplied and dress it up for my avatar, which you can see, This is completely trivial but an example of fun you can have. A more complex example, I asked it to give me a list of all Chicago Public Library branches located within a state legislative district (state house or state senate) where the legislator has a Hispanic surname. There are about 80 branch libraries and about that number of total state representatives, so you might imagine how long it could take to do this the old-fashioned way. With one more query, I had an answer in less than three minutes (about 90% correct). Or, if you ask about the best ways to treat CH, or the pluses and minuses of using psychedelics to treat CH, you'll get a perfectly good answer in a few seconds.
Great stuff CHF but I'm seriously missin the kitties after that Fabio, jail break, sawed off one z image
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3 hours ago, Snowflake said:
I go to the beach a lot. Whilst there I never get attacks or shadows the entire time.
I wonder if this might have anything to do with the amount of negative ions generated by the surf? I know it sounds silly and no I'm not a hippy chick or anything (nothing against them I'm just not one
). It sort of makes sense when you think about the fact that humans are primarily made of atoms and molecules, with ions having a role in the biological process of things like nerve impulse transmission, muscle contraction etc. Ions are basically atoms that have gained or lost electrons, resulting in a net electrical charge. Anyhoo just a thought. Full geek out moment over!
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You could try some ice packs for the swelling. The ice might help to numb the pain a bit as well. The PTSD/Anxiety is a beach! I struggle with it all the time even when I'm in the clear. The one thing that I have found that helps is exercise and staying busy. I know some can't exercise without worry of an attack while others will use it as an abort. Ever since I was able to get a break from a particularly looong attack by jumping on the treadmill, it's been something that I do when I have bad shadows. Sorry I've not got much to help on this one. I hope your head clears up soon!!!
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1 hour ago, CHfather said:
(The actual line between "sometimes" and "frequently" seems much blurrier to me than the line between "frequently" and "always.")
Agreed. The "Sometimes" was a bit frustrating because you are forced to go with that selection even if your response would have been "Never".. That aside, my top three were anancastic, anxious and dependant. The dependant one was a bit funny to me because my husband swears all the time "you have your mind made up and there's no talking sense to you"!!
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10 hours ago, Craigo said:
You know there is an obvious trend on the CB forum where members enlist a feline as their profile picture. Maybe I missed the memo.
I don't think it was ever meant to be a trend... Jeeb has had that profile pic since I joined the CB site and CHF changed his a while back (not sure why but assume it was in an attempt to look more cute)
My profile image for social media stuff has always been of Bosco my late Abyssinian cat (coolest cat in the world)! Sorry to hear about the loss of your pup that's always hard. I lost my Abby Doo (lab mix) and Bosco (Abby cat) not to long ago and still have a rough time with it. Any animal profiles (except reptiles) are welcome in my book:) Thanks for the link. I'll give it a go and see just how bonkers I really am
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Thanks for posting this @Craigo. Definitely something to chew on. I'm down for the Google Sheet poll. In all fairness though, I have to point out that these studies were conducted "after" the individuals were afflicted with either CH or migraine so I can't help but think that the trait outcomes being listed are skewed because who wouldn't be a bit paranoid, schizoid, depressed and anxious after dealing with a good ol fashioned brain arse kicking? I get that it would be hard to conduct the test prior (say on those with a higher likelihood of developing one or the other) but life changes after CH...
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Hey @Snowflake. Sorry to hear of the rough go at things! As for mental disorders, understand that they can manifest late in some unfortunate folks.. While late 20's is the most common, late teens are subject as well. As @Bejeeber and @Shaun brearley have expressly stated it may be time to sit with a professional. No one should have to deal with feeling like they are not in control of their own feelings or as if the feelings they are having don't belong to them. Your mention of not being in the "Driver's Seat", Folkes noticing a change in your behavior and the feeling of being watched are a bit of a red flag that something is out of balance (possibly a chemical imbalance) (Not uncommon). None of these things are incurable, but are best dealt with by professionals which we are not. We are all here, ready to help should you need.
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please help me combat my cycle. Thank you!
in General Board
Posted
O2 can really be a game changer! Do yourself a favor and check out the high flow oxygen therapy portion of this site which includes great info on the dynamics of usage, set up and techniques. Not sure if it's the same for you with using Maxalt, but for me it literally only gave me a 10 to 15 minute break before the cluster bunny was back coupled with making me feel sick and extending the duration of my attacks, same with any triptans I've ever used so just be mindful of that. I totally get the need to use them though especially when your brain seems to be attempting to off you in the most painful way imaginable...As for wins/prevents there are lots so thats the good news! You are already aware of the D3 reg but you do indeed need to take ALL the vitamines and it would be great if you did a loading dose after doing a bit of blood work to see what your baseline is. Other methods can be read about and responded to on here by posting in one of the other more private threads like theory and implementation or share your busting.. please excuse any typos as im limited to responding on my phone with very fat thumbs