BoscoPiko
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Posts posted by BoscoPiko
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4 hours ago, Patheticfern said:
After 2 years cluster free I am back.
I had an attack today. Still shaking.
I will take any advice or information that you guys have. Or share what has helped you
Meds?
Anyone have referrals to doctors in Utah preferably Salt Lake area?
Hi fern,
Sorry you had a bad hit. Do you have anything to help you through an attack? 02? If you have been diagnosed with CH and sometimes even migraine, seems that you should be able to talk your Dr. into a script for oxygen. A little searching around on here about o2 and the proper mask types will prove helpful as well.
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Square one.
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Well shoot,
Guess I am not resistant...
Email from Grassroots...
Dear Rachel,
Your Vitamin D serum level based on your recent test with us is 100 ng/ml or higher. We do not currently have any data to support any additional health benefit of having a level of 100 ng/ml or above. The recommended serum level range, per our Scientists' Call to Action, is 40-60 ng/ml (100-150 nmol/L) for best overall health.
It is important to note that vitamin D related toxicity has been observed at levels of 200 ng/ml (500 nmol/L) and higher per J. Hathcock, Am J. Clin Nutr. 2007;85:6-18.
You may choose to consult with your health care provider to discuss your results.
Thank you for your participation in the D*action project!
Sunnily Yours,
Carole A Baggerly, Director
GrassrootsHealth
A Public Health Promotion Organization
Moving Research into Practice
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On 7/18/2021 at 10:08 AM, Tony Only said:
Does anyone get all their vitamins and co-factors in the anti-inflammatory regimen (Batch regimen/Vitamin D protocol) from iHerb ?
I have been struggling with this for years, buying locally (in Finland) those that I can find and buying from iHerb the ones hard to find locally (vitamin K2 and such). It's been difficult since our local products are very lightweight for this use. For the first time I am down to 6 different producs (Vitamin D, vitamin K2, magnesium, fish oil, 2 multivitamins) but I think I am still getting way too much things that are not required in the regimen.
I have been thinking of buying everything from iHerb (now that finnish customs will tax every shipment anyway) and wanted to ask if you have been able to build the whole regimen easily from products available at iHerb ? Please list the products if you can. This could help others too in different countries since iHerb is shipping all around the world. I think there are other countries where some vitamins and co-factors are hard to find too.
Hi Tony,
I don't know much about what you may, or may not have access to in Finland, but I suppose I got lucky and when I was first getting struck and reached out to a friend that knew an apothecary and she allowed me to use her account to access a site called Fullscript.com they have very high quality supplements for the most part, (you do have to be a pharmacist/apothecary to order from the site). Maybe you can reach out to her as well and see if she may accommodate you? Her website can be found by Googling Two Poppies Apothecary. She also makes all kinds of teas, ointments etc. Not sure if this will do any good but maybe?
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9 hours ago, xxx said:
Hey Bejeeber, Got the Bat Signal. Thanks.
BP, Grassrootshealth has the home bloodspot test kit for 25(OH)D3 at the following link for $79: https://daction.grassrootshealth.net/product/vitamin-d-home-test-kit/
That said, you still need labs for your serum calcium and PTH. Grassrootshealth doesn't have home test kits for these two analytes. You need all three labs [25(OH)D3, calcium and PTH] now so it's best to see your PCP for them at the soonest. The rationale for these lab tests is simple. If your serum calcium is still within its normal reference range, but not against the upper limit, and your PTH is not at the low limit of its normal reference range, you've room to maneuver with more vitamin D3 loading doses.
What's likely happening with the heavy CH hits is you're experiencing an allergic reaction to something in your environment. Pollen, mold spores, dust mite poo, chemical pollutants and some food types are all possible allergens. I drove through Northern CA down to Shasta then East to Reno for the Annual Navy Tailhook Reunion and Conference last weekend. Smoke from the fires was fearsome.
When allergic reactions happen, we need significantly larger maintenance doses so it's best to go straight to a loading dose for 3 to 5 days then drop back to a maintenance dose of 50,000 IU every 5 days (Doing the math, that works out to 10,000 IU/day) or reduce the dosing interval to every 4 days, 3 days down to 50,000 IU/day until you get the needed labs if you're still getting hit.
There are a few things you can do at this point while waiting for labs of your serum 25(OH)D3, calcium an PTH.
1. A first-generation antihistamine like Benadry (Diphenhydramine HCL) at 25 mg four times a day. (You're already taking Quercetin but you can bump the dose up to a max of 3 grams/day).
2. 500 to 1000 mg/day Turmeric (Curcumin) and 500 to 1000 mg/day Resveratrol have helped some CHers. They're great anti-inflammatory agents.
3. You should have the Nutrasal Micro D3 by now so I would take 0.5 mL (40,000 IU) of it as the maintenance dose per the maintenance schedule above and skip the Bio-Tech D3-50 capsule until you get your lab results in hand.
4. Make sure you're drinking at least 2.5 liters of water a day. Staying hydrated while taking higher doses of vitamin D3 is very important.
5. Finally, there's diet. The Atkins-Ketogenic diet has proven effective in at least two RCTs for migraines. I would start it with a 24 Hour fast drinking only water and taking the protocol supplements. When you've completed the fast, avoid all sugars and fruit juices. Sugar is an inflammatory agent and fruit juices are high in fructose. I would also avoid all wheat products for at least 30 days. That includes grain oils like canola and corn oil. Wheat and grain products also tend to be high in Glyphosate (RoundUp) if they're GMO. Glyphosate is a herbicide. It plays hell on the friendly colonies of bacteria living in your gut called the microbiome. Good fats include organic butter, EVOO, avocado oil and my favorite, extra virgin coconut oil. I would also avoid calcium rich foods like all dairy products.
You can eat all the free range organic meats, poultry and eggs you want. A serving or two of wild caught salmon, halibut or Ahi tuna a week is great. You can also eat all the organic Non GMO green and colored veggies you want. Limit fruit to a handful a day of dark berries (blackberries, blueberries, raspberries and dark grapes).
I know all this seems like a hassle at this point, but the payoff is worth it. Work with your PCP in a team effort with frequent labs for 25(OH)D3, calcium and PTH so you can keep loading without going bust on serum calcium. The best indication you're getting the maximum benefit from vitamin D3 comes when your PTH reaches the low normal serum concentration and your serum calcium is still within its normal reference range.
Take care and please keep us posted.
V/R, Batch
Thank you so much Batch! I'm on it! I should have my D3 results any day now from grass roots, they emailed me and said they were sent to the lab on the 7th and that it takes 10 days from then. I am somewhat on Keto but not that hard core so I'll step it up and yes the fire has been a bad issue. I'll print this out or copy and paste it and follow the protocol. Thank you so much for all the details!!
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I know this sounds all kinds of silly, but I've been on the D3 reg for a bit now, along with all the co-factors. I messed up up the first loading schedule by accidentally cutting it 2 days short so I re-loaded for a few more. The D3 has helped in the way of lessening the severity of the pain when I get hit from a 10 to a 7 or so. I understand that the CH is constantly morphinhg and evolving and maybe that's what's happening this time just seems odd as I've only had this a few years.. I am on 480 mg of verapamil as a preventative (was at 600) but it was causing me heart palpitations so I backed down, also still taking 200 mg of the dreaded Topamax because I'm 2 scared to stop at the moment. I also take Coq10 800mg, riboflavin, vitamin C and recently started quercetin (not sure I spelled that correctly). I got hit 3 times so hard today that all I can think is that maybe my body is not absorbing the D. I even resorted to using the drops as I thought that would help with absorbing. I was unable to abort with o2 so had to use the nasty sumatriptian nasal and it only worked for 30 minutes. I'm just at a loss? On month 3 with only a week in between breaks... Just wondering if it's possible to need absurd levels of the D3?
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4 minutes ago, Bejeeber said:
Politics.
I would like to suggest a return to CH specific discussion here, while enjoying the political discourse elsewhere. I can see that so far there are some folks on similar political wavelengths offering views, but can assure that political views of members here are all over the map, and the more political it gets, the more divisive it will be, while we CH'ers need to be sticking together during these ultra hot button political issues times.
Understood..
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On 7/20/2021 at 8:36 AM, xxx said:
Tony,
The Big Pharma and Big Government Marxists and Elitists on the take from Big Pharma here in the US are trying to do the same thing. The only way to fix this problem is to vote their evil backsides out of office. 3/4 the members of the House and Senate here in the US have cashed campaign check donations from Big Pharma so this is a real problem.
Ultimately it comes down to personal choice. Do you want good health with access to USP vitamins and minerals at effective doses or Big Government politicians who want to take away your freedom of choice so they can control everything you do. Politicians and good health do not mix. This problem exists among members both political parties here in the US, so this is not an endorsement of either political party, merely a statement of fact with ample proof.
Take care,
V/R, Batch
This could not have been said any better! One little glitch... Voting needs a bit of reform all in it's self...As we have discovered recently, it is no longer how we vote that counts; but who counts the votes...
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On 9/18/2021 at 7:55 AM, Bejeeber said:
I've gone the online shopping route too, for every single thing, even groceries, not that I'm imagining having groceries delivered is feasible for everyone.
Now days it is pretty doable. With access to amazon, doordash and a plethora of other online shopping options. I do use them sometimes, however I don't like supporting amazon and I often find that produce from an online shopper is often not selected well (squishy/over ripe/under ripe etc.). So I prefer to shop for those things myself. I also like to shop for things for my home in-person as I find it hard to really get a good idea of what something really looks like from viewing online. Anyhoo here is a picture of a face shield that can be worn without messing with ones ears and or touching the mouth... Might be an option? Oh and it's just down rt sexy!!
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On 9/13/2021 at 10:19 AM, kat_92 said:
Good afternoon all!
So I’m sure many of you saw I was having trouble getting my hands on MM, which has been the only relief I had for my chronic CH in the last year. I recently got back into working out heavily, thus having to increase my water intake. I am drinking almost a gallon a day. I haven’t had a single shadow in over a week. I had ONE mild CH last night that went away after about 5 min. I highly recommend everyone upping their water intake significantly if you don’t already drink a lot. I am convinced this helps ease CH. stay hydrated!
kat
I think it's great that you are able to work out so heavily while battling CCH. Good on you! I don't think staying well hydrated can really ever be a bad thing.
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No clue other than to tell you your not alone...
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Maybe see if you can get away with a face shield? At least that way your not having your air ways blocked and breathing used up o2? I refuse both but I'm a mega jerk face ...
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15 minutes ago, jon019 said:
...ima big guy and all those ear-hook styles hurt...any reason ya can't do one of these vincent?
Uff.. I'm Sorry. I'm here in the land of enforcement and I do not ever wear one as the heat from my own breath has put me into a banger or two. I,however do not work for someone else, that being said I am able to get away with it. I've been kicked out of Best buy, Costco, Lamps Plus along with various other retailers (even if I tell them that I have a condition that requires I get max o2). Sorta silly as no one can site the effectiveness behind a cloth face covering? But then again ask a GP about CH?
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Nothing new to report here. I am writing because i feel like writing. I did not have spikes today; nothing to report at least not in the CH world. I suppose - but maybe so?
I do get tired of the typical; but never ignore a cry.
I also wonder quite often how to differentiate? Although I'm sure it matters not much; after all a cry is a cry.
I guess what I am saying is why not try?
I am a skeptic; no busting for me yet - but homework?
Are you really in true pain? The pain we speak of hear? Do you you live this way?
For me, I wake and wonder if I will make it through a shower; will I afford my husband the luxury today? Shampoo and conditioning?
No Spikes have you?
Well holly hell! Lets reset the clocks or do what we just did do????
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12 hours ago, jseivers said:
My CH are episodic, so the first round I had with them almost 4 years ago happened about every other day and at night about an hour after I fell asleep. This was before I started prednisone. The prednisone seems to, at the least, break up the headaches making them happen at different times and I do believe it helps to end the cluster cycle. This round, before I started prednisone, seemed to happen between 5 and 6pm, which was great since it was not affecting my sleep as much. i started prednisone and then eventually got the oxygen. Now, I am off of the prednisone and just doing the oxygen. I do feel like I am on the back end of this cycle as the headaches are not coming near as often as a few weeks ago. For example, the weekend before last I woke up 3 times on Friday night (1am, 3am and 5am). Went to my man cave and jumped on the oxygen. Within 5-10 mins, it was gone each time. Saturday night was two times, and Sunday was zero and a full nights sleep. Slept full night Mon-Thur of the next week. This past Friday, it was 3 times just like the previous Friday, 2 times on Saturday and zero on Sunday. Starting Sunday night I began taking two Benadryl before bed and have continued that this week and have not been woken up yet. I plan to continue that through this weekend to see if it works on the weekend as well. Trust me, getting up 3 times and aborting with oxygen still beats a headache. I surely appreciate all the feedback and other options you have provided me. My hope is that since the CH hit me at a later age, that I will age out soon. The fact that I did not get my first cycle until after 40 years old and didn't get my second until 4 years later is a win in my book after reading other folks stories. I have a good friend that dealt with them for years and he had a CH every 2 hours. I cannot even begin to imagine what that would do to a person.
Any CH is awful but boy would I be lying if I said I wasent just a tab bit jelly of your 4 year gaps.. Sorry you get them at all and hope you find a way to make them say goodbye forever as I suppose that's what we are all wanting!
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13 hours ago, xxx said:
Hey Jseivers, Celtic Cluster and BoscoPiko,
Here is another chart from the oxygen demand valve method of aborting CH study I ran in 2008 that may help explain why the frequency of your CH goes up after repeated aborts with oxygen therapy. This chart illustrates weekly CH frequency, mean weekly time to abort and mean weekly pain level at start of therapy over the 8 weeks of this study for one of the six chronic participants. The other six participants had similar charts, just not at dramatic in weekly CH frequency range.
As you can see, the weekly CH frequency increased from 12 CH/week at start of this study, up to a maximum of 38 CH/week at the four week mark then dropped to 8 CH/week by the end of week 8.
This chart helps confirm the frequency of our CH increases with continued use of oxygen therapy up to a point then decreases over time. At the same time, the mean weekly time to abort drops from 8 minutes at the start of this 8 week study down to 4 minutes by week 8. The mean weekly pain level at start of this 8 week study also dropped from Kip-7 down to Kip-4 by week 8.
Why this happens is very interesting. It involves what is called vascular toning. Essentially what is happening over repeated aborts with oxygen therapy and hyperventilation is the muscles lining the arteries, capillaries and microvasculature within the trigeminovascular complex tone up (strengthen) like doing curls with a dumbbell strengthens the bicep muscles. This means these vascular muscles become more efficient in effecting the vasoconstriction (narrowing of the lumen) that mechanically helps abort a CH.
Of course all this is nice to know, but only a foot note in your headache log if you start the anti-inflammatory regimen with vitamin D3 and the cofactors to control your CH.
82% of CHers respond to this treatment protocol within the first 30 days with a significant reduction in CH frequency from 3 CH/day down to a mean of 3 CH/week. Moreover, 54% of CHers starting this treatment protocol experience a complete cessation of CH in the first 30 days.
Over the last six months, these efficacy figures have actually started improving. This is due in large part to the use of the sublingual Micro D3 nanoemulsion taken during the initial loading schedule.
The existing loading schedule called for 600,000 IU of vitamin D3 taken at 50,000 IU/day over 12 days. It resulted in a mean increase in serum 25(OH)D3 of 60 ng/mL on top of the baseline (starting) 25(OH)D3 serum concentration.
The new loading schedule calls for 700,000 IU of vitamin D3 taken at 140,000 IU/day over 5 days. It results in a mean increase in 25(OH)D3 of 70 ng/mL on top of the baseline (starting) 25(OH)D3 serum concentration.
This new loading dose is made up of two (2) Bio-Tech D3-50 capsules/day (100,000 IU/day) and 0.5 mL/day of the Nutrasal Micro D3 nanoemulsion taken sublingual under the tongue, (40,000 IU/day) for a combined loading dose of 140,000 IU/day. Both the Bio-Tech D3-50 and Nutrasal Micro D3 shown below are available at amazon.com
As this is a more aggressive loading schedule, labs for 25(OH)D3, calcium and PTH are now required two weeks after start of this loading schedule. These labs are essential to ensure serum calcium remains within its normal reference range.
The rationale for this new loading schedule is illustrated in the following normal distribution curves for 25(OH)D3 lab results at baseline and after 30 days on this treatment protocol.
This new loading schedule will shift the green normal distribution curve to the right so that the mean 25(OH)D3 is close to 90 ng/mL after five to six days. This also results in a faster favorable and CH pain free response.
Of course there are speed bumps on the way to a CH pain free response. The most common speed bump is an immune system response to allergens that release large quantities of histamine. As histamine to a CHer is like Kryptonite to Superman, this is where a first-generation antihistamine like Benadryl (Diphenhydramine HCL) comes into play. It blocks the histamine H1 receptors and this helps prevent the neurogenic infrlammation associated with allergic reactions.
As BoscoPiko pointed out, some CHeers have a reaction to Benadryl. Fortunately, there's Quercetin. It's a plant and fruit based flavenoid that acts as a good antihistamine, but larger doses are needed to get the same response as Benadryl.
Hope this helps.
Take care and please keep us posted.
V/R, Batch
This makes alot of sense. Thank you for all the details!!
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Or benadryl if you're not allergic..
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I get the bangers back as well who knows why but a break is a break so I'll take it. I don't think I've ever been slapped back from o2 but not 100% sure as of yet still taking notes and walking around blind.. the o2 helps me abort for about 7 to 20 minutes if I'm lucky and it's a late banger I get to go to.sleep and then I think I'm getting hit or dreaming of spikes I can't differentiate sometimes I wake sometimes I don't. Lucky I don't most of the time.. got intouch with Batch today and started Quentin as I'm allergic to benadryl.. maybe try that.. ?
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1 hour ago, BoscoPiko said:
Ice pickers for sure!
So I suppose we must we must identify as as an object, sex, person, place, thing a majig, an LMNOXHAYYDII OR A P. So.. duh du duh du duh..:
Ice Pick Warriors
Lightning Lovers
Spike Enemies
Eyeball Sweller's
Eyelid Drooper’s
Hot Pick Troopers
Shock Therapy Snoopers
Pain and Hell Dwellers
Suicide Never Livers
Rainbow Brain Seekers
Between the the Cluster Sneekers
Life Lovers
Strong MFers
Don't Like that Smellers
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27 minutes ago, Ganuchi said:
Ice pick? A drill?
Ice pickers for sure!
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14 minutes ago, Ganuchi said:
They need more people who think like u in CA……Philly isn’t quite as bad but I fear we are on the way
We should figure something to identify as being cluster heads
That's a great idea I wonder what the heck we would identify as, lightning???
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On 9/14/2021 at 11:24 AM, SpidaH said:
Skittle farting unicorns Hahahaha. Nice!
It's funny, kinda, how things are so opposite here in Canada, compared to some states.
Canada-- drinking and driving pretty much equals murderer, but smoke pot as much as you want, no biggie, cops don't care as long as you don't drive high or ripped out of your face...
In some states-- smoking pot gets you slammed on the hood of a cop car, but walking down the street with a beer, or writing country songs about having an ice cold beer on the dash on the highway, is just fine and dandy....
Just an observance, since we're on the
And a very good one indeed. Not sure we will ever be a "Golden State" again well that is unless someone manages to find some magic beans, climb the stalk and bring the goose home...CA is the land of the infamous liberals where you can be anything you want ( male if your a female, female if your a male) all that neat fun junk... in hindsight I should have said that I identified as a sea lion or some other water needing creature to the tax man and the Dr. When wanting the write off for the darn pool... Cried discrimination then maybe...
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Ok... I feel like I'm on the shrooms after this LOL. Guess I suppose I'm the simpleton in the room here "Hi" I never ever want to go chronic I have never read anything about being chronic being easier to manage or the hits hurting less? However I am a new hell dweller. I suppose in telling you that I have also never heard of tapering off of the verapamil will show as much or I could blame that on my Neuro for never filling me in on that part as well as telling me every time I have an appointment "sorry these things are still bothering you" (as if they are going to magically go away) I also liked his statement that they are sometimes lunar? Funny that the verap is making your member stand at attention as I have to monitor my heart rate because it dips mighty low sometimes who knew.. Maybe I'll plug my husbands nose tonight and see what happens..JK... (Not shrooming just an odd sense of humor).. You did mention a beautiful wife!! Go get her buddy!!! Wishing you no pain!!!!!
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40 minutes ago, Celtic Cluster said:
So people, I’ve got some relief over here. Not completely clear but good/welcomed relief. I’m definitely putting it down to this newly discovered phrase “slap backs”!! They really are a thing and they’re horrible!
I'm really glad you have found some relief! I can't recall if you had said that you were taking D3? If not I think you should give it a try it can't hurt? I recently started it and it hasn't eliminated my bangers but it has cut down the intensity and that's something..
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Is it Possible to be D3 Resistant?
in General Board
Posted
I did talk to ××× and it turns out that it's not all gloom. I am taking vitamin k and all other Co factors I can't take benadryl as oddly enough I'm allergic to it... I am taking quercetin instead. My verapamil is the ER and I do often think of weenie off the toprimax as no one likes constantly double typing words etc...I need to get more labs done for calcium levels etc.. I'm going full keto and drinking tons of water to flush the extra D out for now ..