BoscoPiko
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Posts
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Posts posted by BoscoPiko
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2 hours ago, Bejeeber said:
Ugh, yep that makes sense. Here's hoping this Full Monty kicks in right away!
Just as the beast will surprise us by slamming us with a cycle right when we least expect it, I like to think sometimes we can get surprised by not having one kick up when we do expect it. Seriously hoping that for you @BoscoPiko!
Thanks Jeeb I don't really know as of yet what's really going on. it's late for me and I'm up with a stomach ache..
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Well I'm gonna assume he meant exactly what was said and up everything this evening as I'm not feeling so good. So fingers crossed! No CH as of yet but have that somewhat inate "here it comes feeling" accompanied by non normal shadows if that makes any sense at all...
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Well I'm gonna assume he meant exactly what was said and up everything this evening as I'm not feeling so good. So fingers crossed! No CH as of yet but have that somewhat inate "here it comes feeling" accompanied by non normal shadows if that makes any sense at all...
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On 6/19/2022 at 12:49 PM, xxx said:
It includes 3 grams/day each of Turmeric (Curcumin), Quercetin, Resveratrol and Omega-3.
I just want to make sure that I am reading this correct.. So 3,000 milligrams (grams to milligrams) a day of the above? If so I need to make some adjustments also can these all be taken in one single evening dose or do they need to be spread out? Anyone have any insight?
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17 hours ago, jon019 said:
practiced breathing technique(slow breathe, breathe/hold, hyperventilation, combo).....
100% agree with this as I have had to change techniques multiple times to reach a successful abort. Sometime the breathing technique that worked the last time wont work the next so on and so forth.
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1 hour ago, Bejeeber said:
Deleted. I had thought maybe you just wanted to doubly emphasize your point.
Seriously though, dunno why the pesky double posts happen. 
LOL. I'm not even sure how I did it? Thank you Jeeb.
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13 hours ago, BoscoPiko said:
It's a baffling but stark reality that none of what has helped many of us thus far, has come from a doctor. That in itself speaks unnecessary vocalized volumes... I have always wished that I could get paired up with a doctor that had CH but due to it's rare nature I've had no luck. The best I've gotten has come from none other that the amazing folks on here. If your brain is real mean to you, this place is a library full of real methods and means.
Wonder why this posted twice? Maybe a mod can delete one?
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It's a baffling but stark reality that none of what has helped many of us thus far, has come from a doctor. That in itself speaks unnecessary vocalized volumes... I have always wished that I could get paired up with a doctor that had CH but due to it's rare nature I've had no luck. The best I've gotten has come from none other that the amazing folks on here. If your brain is real mean to you, this place is a library full of real methods and means.
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9 hours ago, Shaun brearley said:
ive been accused of being a drug addict
Crazy thing is that most of us cluster heads wouldn't touch half of what the common day doctor is willing to prescribe for pain as it does nothing for our sort of pain.
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13 minutes ago, CHfather said:
Is it that your doc doesn't know you have CH, or that he knows that you have CH but keeps endorsing/prescribing migraine meds? Has he prescribed oxygen? Has he prescribed Imitrex, or verapamil, or one of the new CGRP meds (such as Emgality, Aimovig, or others), all of which are also treatments for CH?
What are you doing beyond pharma meds? D3 regimen? Busting?
Most CH patients, as has been suggested, have very little need for doctors. If you can get an oxygen prescription, that's good, but you don't need it to have an O2 system. A prescription for an injected or nasal triptan can be very good to have, but those are also migraine meds. And I think everyone probably ought to try one of the CGRP meds (also essentially migraine meds, with boosted dosage for CH), but others disagree with me about that. Beyond those things (and maybe a course of prednisone to interrupt a cycle), the OTC D3 regimen is much better (more effective; fewer side effects) for most people than verapamil as a preventive; the D3-related anti-inflammatory practices (including the "Full Monty") can often stop a cycle; the best abortive, oxygen, can be set up without a prescription, as I've said; and busting is great if you are open to it.
You know I was really hoping for this rt here.. I am terrible at articulation but you @CHfather not so much. Good questions and response. I'll get better as long as I continue to educate. Thanks for piping in to this new suffering individual..
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19 minutes ago, jon019 said:
....need.new.doc...
...preferably a HA specialist, at worst a open minded pcp who will respond positively to your needs (knowledge of which you may have to supply). nearly every clusterhead knows far more re CH than most docs, including neuros, will ever know. most doctors now have neither the time nor desire to become a student of CH for you, its a rare condition. you are the advocate....
Well said.
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Uff.. That's a tough one if your doc is under the impression that you only have migraine? Has he diagnosed you with CH? I suppose you could go into a very detailed version of your attacks in an effort to get him/her to see the difference but if the doc is not familiar with CH that may be a fruitless effort. You should be able to find and bring a printout of what CH is with you on your next visit (not sure how much that would help either). You may want to look for a local headache specialist as you would most likely have better luck getting the correct diagnosis (if you have not been). I do however, believe that many of the medications that are used for CH are somewhat similar to those for migraine with a few exceptions so that may be why your doc keeps talking migraine?.. Not sure if this was all that helpful but hopefully some of the more experienced will chime in here soon.
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3 hours ago, Jimmy J said:
Trying to get lab work done for d3. My pcp says that because of supply chain issues the vials needed to perform the test are unavailable. Is this an issue for anyone else?
Maybe my response to this didn't go through for some reason but no I haven't had that issue but I'm not surprised. You can order a home finger prick test through grass roots health. You will need to sign up to be a part of the study then you can order the kit, prick a finger of your choice and send in the sample. Takes about 2 weeks but a way around the supply chain issues.. cost when I did it was around $70
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1 hour ago, spiny said:
Currently. 1:28pm, there are 75 users online. One member - ME!! Those are the Bots that troll for information and then roll off with it. Also why we try to keep some topics on the Members Only boards. We do get some times when the board goes pretty quiet for a few weeks then gets really busy again. I take the calm as people are doing better and enjoying the day.
Happy Friday Bosco!!
Back at ya Spiny!
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1 hour ago, CHfather said:
At the home page, there's a tab (upper left) called "Users Online." It says that right now there are 94 users online. I don't know how that number is arrived at, and I suspect it's not anywhere close to an actual reflection of how many people are actually making use of the site (as opposed to search engines finding it, or maybe multiple entries that reflect each time one person does a different thing), but maybe it does suggest that the information is being used, even if there are not many active discussions. (There's also an "activity" tab where you can see that there are people joining.)
Good to know. I suppose there may be a lot of folks that are just sifting looking for answers prior to asking questions which is a good thing. I sift on here a lot even on really old threads and still find interesting info.
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2 hours ago, TryingToFix11 said:
I had been cluster free for three years since being on the D3 regimen (only shadows that were easily knocked out by sumatriptan). Huge thanks to Batch and this forum for gathering the data and creating this wonderful regimen. Recently had blood work completed and my D (25) was approx 120, so my PCP wanted me to cut my D3 intake in half to 5Kiu. Shortly after dropping it down to 5k (approx 1-2 weeks) I started getting walloped again with my first cluster in years.
The initial cut to 5k was approx 1 month ago, so the last 2 weeks have been unpleasant to say the least. After doing more reading and checking my calcium (which was 9.7) I realized I never needed to cut the D in the first place. For the past week I’ve been taking 50kiu daily with the rest of the regimen to get my D back up and still getting beat up pretty bad.My plan is to continue at 50k for one more week and get blood work done at some point late next week. I was curious about the forum and/or Batch’s thoughts on this plan. Thanks in advance!
That's so awesome that you went three years on the D regimen without a CH. I never could justify in my mind why physicians with some knowledge of CH wouldn't suggest the D protocol and or why they would think so archaicley that they would back us off something that was improving our quality of life. Seems that your calcium levels should have been checked alongside the D and a few other things that seem to give cause for concern when on higher levels of D3 prior to telling you to back off. I'm not anti doctor or anything like that and see my regular PCP often as well as my neurologist. Overall my neurologist is a good guy but even after all this time an numerous emails back and forth I have yet to receive a response on my D3 questions. Idk it just makes me sad that natural approaches are not widely tought in medical schooling. I hope your levels get back to that of repreave soon!
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Odd to see this forum be so quiet. I sure hope that's a sign of happy noggins and that all you fellow cluster heads are getting a well deserved break!!!
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I hope you don't feel overwhelmed by all the responses as it can be hard to keep up with when distraught and in pain. At the same time I hope you understand that folks here understand what you are going through and it breaks hearts to see or hear of someone struggling as we all have and are where you are now and again. Chin up, left foot forward, rt hand slightly behind the left and don't forget to pivot the rt knee when throwing a rightie or visa versa if your a lefty! Knock it the heck out! Prayers for you!
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7 minutes ago, Moona said:
Can u please elobrate on the red bull part as i didnt understand it well.
Many find that if you quickly down some sort of caffeine prior to getting on the O2 it helps to abort the attack quicker. Not sure why just that it helps..
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Hi Moona,
Sorry you're down in the dumps rt now. I have never taken a steroid for my ECH but I have been on verapamil for about a year and a half. I do recall the verapamil taking a bit to start helping cut back the frequency of my attacks. It does not stop the attacks but I have far fewer than what I did prior to being on it. I try not to be down on myself for needing to take it or anything else for that matter that will help keep the beast at bay. You gotta do what ya gotta do because living with cluster is not really living at all. I have seen some posts on here about the steroid being used as a bridging of sorts to help you make it through while the other preventative takes hold so the fact that you went without the verapamil for a bit after you dropped the steroid may have got your system messed up and or set back for a few. 240 or 280 (if that's what you meant with the 40-120-120) total for the verapamil sounds low and I only started getting any results with upwards of 480mg a day. You really need to look into the D3 regimen, it has helped me out a ton and many stop the verapamil for good once the D3 gets rooted. Red bull, 5 hour energy shot or cold coffee prior to the O2 really helps give the oxygen a boost and sometimes just the caffeine can help lots. I have had bad shadows most of my CH career but have found that RC seeds and Curcumin with ginger really knocks the shadows out. Hang in there and around here as this is the place to be to find help with your CH! Feel better soon!
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Not trying to be a Debbie downer here but I somewhat doubt that a deviated septum plays much of a role in CH (I've been wrong tons of times). I can see how the lack of intake of oxygen may be the focus of this possible hypothesis, however most of what I have read tends to not correlate. I know CH can be a very highly hereditary affliction but no one in my family (that I know of ever had it). Suppose I'm the lucky one out of the bunch.. yea me! I must be all kinds of important.. anyhoo I'm happy for your uncle! Man oh man what most all of us would give for a 13 year clear spell. If you get it fixed and CH goes away please do share!
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Hi Jimmy,
Sorry you're having a rough time. I sure hope your doc gives you O2 as it's a mainstay for us CH folks. I have heard something positive and negative about nearly all medications that are typically scripted for CH. I am on verapamil (ER) I don't get any side effects unless I go up past 480mg a day. Many say that the rapid release form of verapamil is more helpful but I haven't tried it myself. Caffeine seems to help many and I've even aborted an attack once with a strong cup of coffee. Are you on the most recent version of the D3 reg? A few new items have been added and it's important to take ALL the co-factors or it won't work. There are other options (not as conventional) that can help you. Check out the little blue ribbon at the top of the forum (new users please read here first). Hope you feel better soon!
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15 minutes ago, Bejeeber said:
good vibes
It has been so cathartic to mess around in there. I love it! On a more to the topic note I did read that heat has a negative effect on vitamins in general but there were a few called out specifically like COQ10 and B12..
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This one is a new conundrum for me as I did not know that ED meds could be a trigger but now I do so thanks for that tid bit. It seems that even natural supplements do the same as far as expanding the blood vessels to allow a higher flow of blood to the um member. I have read about sex in itself being a trigger for some men so if your guy is looking for something to push through even if being hit well .. heck good on him! I guess if you don't think he needs it then maybe try convincing him of that or give some of the natural supplements a try? When I did a quick search it returned something called "him" and quite a few others that I'm sure you already read about. Not much help here but didn't want to leave you hanging..
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First Cluster in Years - Trying to Get D Levels Corrected
in General Board
Posted
No you are rt. I need to.. just long days of late .. no excuse.. I'm soaking some now. Found a rattlesnake in my greenhouse and it got me all up in arms and I suppose I forgot to put my health first