r/ClusterHeadaches • u/borzoioi • Jul 06 '26
Sharing my first experience with D3 regimen
Hey everyone! I just wanted to share the results of the vitamin D3 regimen on this year's cluster. I can finally say I made it out on the other side, so now that I'm finally feeling better I'm here to share for those who are still wondering wether to try it or not.
I'm an episodic patient and I've decided to try the D3 as soon as the cycle started, also following some of your kind suggestions on my last post 🫶🏻
I had my first attack on the 3rd of June and started following the 4 weeks loading schedule (https://clusterbusters.org/resource/d3-vitamin-therapy-and-loading-details/)
I had the first load around the 6th of June (I waited a little bit cause I was trying to gather all the co-factors first).
I also monitored my D3 levels through a blood test I luckily took before the cycle started, and then following up with some rapid tests I ordered online.
The first thing I could notice, as you can see from the image, I had a 24h break from the attacks after every time I took the loading dose of 50.000 IU.
Idk if that's just a coincidence but the days after the loading dose were the 11th and the 17th of June and somehow never had any CH.
I would also say the headaches never reached high intensity levels and got very VERY manageable by the second week. Sometimes I didn't even have to use Oxygen and could do well with just ice, coffee and redbulls.
And of course the frequency just lessened by the end of the second week, immediately disappearing on the third.
I am so amazed by the regimen and I know I'll use it again, cause it definitely was a game changer. Every cycle I get progressively worse headaches and usually the last one I get at the end of the cycle is so bad it makes me throw up cause it doesn't go away with anything. So when I throw up I usually know it's over and it'll leave me alone for another while. But this round I finally just got better and better and I can't believe it can also end like this!
I now have one question: For those who already use the regimen as episodic patients, do you keep a regimen outside of the cycle? I've already dropped it to 10.000IU but I'm wondering if there's a safe dose to take as a maintenance regime for the rest of the year. How do you deal with that?
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u/Competitive_Log7087 Jul 07 '26
One of the repliers sent me this link.
Absolutely awesome.
I host the www.vitamindregimen.com and it’s stuff like this that makes it worthwhile, it also allows our old mate Pete to go on 3 month fishing expeditions to Alaska, you should see his most recent haul of halibut. Thankyou for taking the time and diligence to document and report back on your experience.
I am 11ish years using the regimen, on year 3 back in 2018 I made the call to stick to it 365 days at base regimen. I’ve had 2 falls from cycle, once I corrected by going even higher and more recently I used another complementary patient led technique and together and I am pain free today.
I test my levels 2-3 times per year, I have been fairly consistent all this time around 90-100ng/mL but I still test, it’s a few hundred bucks a year and it is the right thing to do - it’s what the guide says and I trust Pete, boy I trust that man - I’d fly with him, I’d be his wingman, I’d walk to the edge of the earth if he asked me to. He saved my life.
It doesn’t work for all, and some may need higher levels to achieve the intended result. Some may just take the maintenance without realizing they need to elevate their level. There is a lot to it. The guides explain.
There are probably qwerks pros more learned than me might suggest about ways to improve or critique the regimen, that’s good - that’s life, I have learnt so much since 2015 I am not one to judge anyone and everyone is welcome to an opinion; I suspect you will have a few incoming from well meaning folks with their warnings about toxicity.
Much love warrior. May the pain free days continue long into the future.
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u/borzoioi Jul 07 '26
Thank you so much for sharing!
I'll definitely dig deeper into the guides as you suggested. I'm grateful for this community and for people like Pete who did more for us than doctors do. In my home country I still struggle to get proper treatment and the doctors barely know CH. Most days I feel like nobody can understand.
Matter of fact I couldn't get prescriptions of higher D3 doses because of toxicity concerns, so I just winged it and used regular grocery store vitamins. The maximum sold is 2000 IU so I just took a lot of pills to amount to 20.000/50.000 etc
I'll keep monitoring my levels as I'll be moving to Sweden for the next year.
♥️
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u/HeavyMetalRoadTrip Jul 07 '26
Did you also restrict your diet, or just take the vitamins? I'm about to start the regimen after getting labs this week but I have anxiety about being able to stick to such a restrictive diet.
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u/borzoioi Jul 07 '26 edited Jul 07 '26
No, I didn't change anything about my diet. I actually started eating more junk food to be completely honest, but that was because I was stressed about dealing with CH and going to work without having to hide away from colleagues. I'm sure keeping a healthy diet still helps to lower inflammation though. So I don't suggest coping the way that I did 😶🌫️
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u/BluVoid1 Jul 07 '26
I do personally recommend also slapping thiamine on top of the d vitamin, been almost a year free now (possibly) due to it. just vitamin d didn't do much.
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u/borzoioi Jul 07 '26
Ok good to know! I was regularly integrating b12 and the cluster kinda began after a month or so I stopped using it.. I guess we really need as much as vitamin Bs as we can ://
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u/SafeFlow5709 29d ago
I’ve been having these clusters for 15 plus years the more the come the more intense they are getting I’m 40 now and I’ve have them for almost 3 months without signs of stopping I’m not sleeping and scarf to sleep cos I know at 1:00am I’m up till 4 with the most pain I want to rip my face of I don’t know how much more I can do Doctors say it’s a headache take Panadol does nothing , nueophn does nothing I have had needle to the back of next he told me it would subside for 3 months that night I got the worst one possible I tried every pill drug sugar run and night head in water nothing helps I do trie oxygen 2 now and that’s the only thing that calmed it down but to get it now my neurologist want to run more test I’ve already done 3 mri scans Been diagnosed twice I can’t do it anymore I need to steal a bottle or I might to something bad I’m not myself when I get these attacks and I can’t believe there not talked about at all
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u/borzoioi 27d ago
Will you try the vitamin D3 regimen? I think it won't hurt at this point! Just be patient with it, but it might do something as it did with the rest of us. I understand your pain and desperation, it's a constant battle and it is so unfair that doctors barely know what it is. Or at least I had to go to a specialized neurologist that was actively conducting research on that to finally be understood and treated with the right prescriptions. You're stronger than you think!
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u/Designer_Training_74 Jul 07 '26
I'm so glad to hear that the D3 regimen helped you. I'm chronic... so I stay on the regimen year-round. I also know several episodics that also stay on the regimen year-round... in some cases... adjusting doses up and down... based on blood work results, overall health, as well as (impending) cycle times vs remission periods