BoscoPiko
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Posts posted by BoscoPiko
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Well in about a week I would have been CH free for 9 months. That's a huge accomplishment for me seeings that I've been pretending it's Easter with visits from the cluster bunny every 4 or so months... I did not expect all this fun to go away for good so I am not disappointed. This one must have been really itching to get out and take hold because I am now 4 hours in and can't seem to get the o2 to work (went through one tank so far today) trying all sorts of breathing techniques. Anyhow I of course had to be 20 miles from home with no o2 in the truck when it hit so I had to wait to get on it and that may be why I can't get it to work this time. I got full on broke neck within an hour of the spike festivities which is diffrent as that usually happens for me a few days prior. On a positive note I am functioning and writing this through the hits meaning that even though this sucks some ugly ass it's been worse intensity wise in the past. I am assuming I owe this more mild version to the D3 regimen. I suppose I'll make this a seed night and see if I can bust it as I've only ever used it as a shadow killer... little scared of the slapbacks I have read about on here but I've got to see if I can make it work prior to this wedding I have to go 2. Anyhow if you read all this your a champ as this was a long winded rant!
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18 hours ago, SCiMMiA said:
describing what I feel but it is more like a constant pressure behind and around the eye
This part sounds to me like a tension headache but the duration is still off.. most tension headaches last around 2 hours or so. I have had some pretty lengthy CH attacks (longest I remember was almost 6/hrs.). The other part where you say you lay down and wiggle around until you can fall asleep is also a bit different as a lot of folks with CH can't handle laying down and most can never fall asleep exhausted or not. Instead we pace, kick out at each spike, curse a lot and of course rock back and forth. If the pressure you speak of is the sort that leads you to believe that at any moment you may be holding your left eyeball in the palm of your hand then you may be suffering a CH attack. I am not saying it's not CH and am most certainly not qualified to diagnose squat, but the way you describe it sounds a little different. Sounds like some nasty relative of CH though... The previous responses have pretty much all the info you need to start trying to get this issue under control and I most definitely second the D3 regimen as it can't really hurt to pump yourself full of good vitamins. The oxygen is also something worth trying and has been scripted to some with migraine (my sister had a bad eye that caused her terrible migraine and they gave her oxygen) eventually the eye had to be removed as it was so cataract ridden it couldn't be saved but she didn't have to be diagnosed with CH to get oxygen. I sure hope you get this sorted out! Wishing you some pain free days!
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30 minutes ago, Rod H said:
Listen to your body and mind.
Great advice!
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11 hours ago, Moona said:
as long as i follow a strict sleep schedule.
I have found the sleep schedule to be very important in managing my CH as well, like you said sometimes it is not always possible to hit the sack by 9 so other prevents like the D3 regimen are supper important. I have never tapered off the verapamil even though in reality I don't believe it has ever stopped a cycle for me, but has cut back the amount of attacks when in a cycle. I would think you would want to check your D levels prior to trying to taper off the verapamil. If you did not do a loading dose for the past week you may not have reached the level needed to keep the CH under control if you were deficient to begin with. I'm not sure about the tapering down but I was on propanol prior to the verapamil and had to taper off of the propanol for about 2 weeks prior to starting the verapamil.
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9 hours ago, Bejeeber said:
A rattler in the greenhouse!!??
Now THAT is one decidedly unwelcome visitor - wow, what a way to turn those good vibes bad in a jiffy. 
They'll be all the way back to good toot sweet though.
Seriously! Took the Zen rt out of the place... But we figured the only way it could have gotten in was through the sliding barn door because there are/were gaps under it and on the sides. We sealed it up and I'll be back to playing around in there today. Snakes gotta live somewhere 2 but I would prefer them not to shack up in my greenhouse... I upped my levels of the supplements listed by Batch last night before bed and downed some battery acid snot and this morning the shadows are almost gone so that somewhat tells me that my levels were 2 low and that I need to stick to the every 2-weeks of dosing while being so close to my normal cycle.. I think that because I have had shadows pretty much daily when out of cycle in the past that I have allowed myself to dismiss the warning of them unless they are really intense... So I learned something new... Anyhow I didn't mean to hijack this thread it just sorta morphed from a question to me whining
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1 hour ago, CHfather said:
Any reason not to take some seeds right now, preventively?
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
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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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Was a Good Run
in General Board
Posted
Lol thanks Jeeb. Even though I didn't get my usual warning I was somewhat expecting it so its ok ya know.. I have more to work with now than I ever have in the past so that's a super positive thing. Sure did kill my greenhouse tinkering fun for the day. Could be worse and all of us cluster heads know that! I'll get through this just like we all do.. won't be fun but at least I know I'm not alone!