manu08

tl;dr I have been taking D3 a while and currently experience near daily tension headaches. If I stop taking the D3, the tension headaches go away, until I take it again. I have been consistent in my other drug usage (primarily emgality) and diet. I have replicated this several times and am not sure how to approach maintaining high hydroxy 25 levels without D3 supplementation. Any ideas? Longer version: I have dealt with tension and migraine headaches most of my life. Both were episodic until 2 years ago when I went chronic. I know some folks consider them the same, but I find their patterns and profiles very distinct. By tension I mean front/center of head pressure that develops into a headache, rarely severe pain, but painful enough to be impactful. My migraines are unilateral or rear of head, and seem to cause light sensitivity, ear aches, sinus congestion, and the headaches are worse, occasionally severe. Once I went chronic for migraines I started doing standard supplementation with riboflavin, magnesium, and riboflavin and it didn't help. I then aded D3 (5k IUs per day). It didn't seem to help much, but I continued taking it because I know I'm D3 deficient if I don't supplement. In December 2024 I developed cluster headaches and quickly found and upped my D3 for a loading dose then normalized to 10k IUs per day to maintain my hydroxy 25 levels ~100ng/mL. This seems to have worked well for cluster headaches, but I'll have more confidence if I make it through this coming Dec/Jan without a cycle. In any case, I've also since gotten my migraines under control via emgality. The D3 regimen itself didn't seem to affect my migraines or tension headaches. That leaves me with the near daily tension headaches. I've been trying elimination diets without success, but I became suspicious of my supplements because I accidentally missed a couple doses and noticed I didn't have the tension headaches. I then intentionally re-tested multiple times and the pattern is consistent. I wondered if it wasn't the D3 itself but something in the pill, so I tried different brands (Now and Pure Encapsulations) which have distinct ingredients aside from the D3, but that didn't help. I have noticed the tension headache pain is somewhat linear to the dose (10k IU is clearly more painful than 5k IU dose). I plan to keep testing lower doses to see if I can get away with 1-3K IUs per day without pain, but I'm hopeful this community can provide suggestions with alternative approaches since dropping that low will of course put my hydroxy 25 levels significantly below D3 regimen targets.

I experienced my first CH cycle in late 2023 (so fairly recently) and quickly discovered and embraced the D3 regimen which helped me successfully take back control of my life before CH took over. I got very lucky I came across this resource so early in my CH journey, and my hydroxy 25 was already over 60 so I was able to load up quickly and my CHs tapered off as expected when I cleared 85. Unlike some, the D3 regimen hasn't been as helpful for my other headaches, and in fact, my tension headaches have gotten more frequent and worse since I've been on the regimen. I've been trying to figure out why, and I came across this reddit thread with multiple folks sharing data points about magnesium glycinate in particular causing tension headaches. Has anyone here experienced that? I've dealt with headaches (migraine and tension) a long time and not heard of supplementing causing headaches, but I suppose it's possible. I was considering dropping the magnesium for a few days and seeing what happens. My tension headaches are pretty much daily so I should know within a week if there's something here. That said, I'm fairly nervous about deviating from the D3 regimen. How large is the risk that deviating from the risk reintroduces CH headaches? I realize in the short-term the risk is fairly low, but in the migraine world when a treatment works it can be pretty scary to go off it, but it's a common pattern that resuming a previously working treatment doesn't work again. Is that common for the D3 regimen? Do folks often go off it for whatever reason and find that it doesn't work if they try to do it again at a later date?

Sorry for the delay, I didn't get the notifications I expected. I'll figure it out. Anywho, the 10-20 minutes is the peak of the attack, the portion of absolute misery that redefined my understanding of pain. All of my attacks have happened in the afternoon/evening, and I had the shadow on and off for several hours before things escalated into an attack. Looking back through my notes, I'd say there's shadow with more modest pain levels for a few hours, then the climax of the attack lasts 20-30 minutes. I have treated them with sumatriptan pills. Obviously that's too slow for these attacks, but I didn't really know what I was doing at that point and hoped it would at least quell additional attacks for some period of time. I have since met with my neurologist who agreed they were cluster headaches, and I got sumatriptan auto-injectors to help going forward. We also discussed the possibility of trying emgality, but haven't started that process yet. In the meantime, I also went all in on the anti-inflammatory regimen. My hydroxy 25 was already 63 ng/mL because I've been taking D3 for a while, but I added the co-factors and loaded up the D3 for a bit and quickly crossed 80 ng/mL. Since I hit that level, I haven't had a single cluster. That's only 11 days, but the prior 4 clusters were getting much closer together in timing, so that feels like a potential win. I have an appointment with Jefferson Headache Center next week (was already on the books for migraines), and I'll consider getting oxygen and see what they think about the whole situation.

I originally posted this on reddit, and someone pointed me in this direction, and I'm finding clusterbusters to be a wonderful resource and community so far. Thank you all! I'm sharing my story for reactions, I'm trying to connect some dots. tl;dr it seems very interesting that I developed what I believe to be cluster headache attacks just weeks after giving up caffeine cold turkey after fairly regular consumption for decades. Longer version: I've been dealing with migraines for my entire adult life, about 20 years. Most of the time the migraines were episodic and managed with basic treatment: rest, ice, typical OTC meds (including excedrin). I have had periods where the migraine frequency increased, but nothing like fall 2023. Suddenly I was having migraines daily, the light sensitivity really took over, started wearing FL-41 glasses nearly full-time. I quickly got my act together and got an alternative acute medicine, Sumatriptan, which works well for me. I tried to power though while paying attention to my excedrin and Sumatriptan usage. That strategy wasn't working as well as I'd like, so on December 24th I decided to quit excedrin cold turkey. I also quit caffeine more broadly, which mainly meant no more daily soda. I was hoping that caffeine addiction and/or excedrin overuse was triggering my migraine frequency. I knew quitting cold turkey would be brutal, but I had around 3 weeks off for the holidays, and I wanted to maximize my chances at normalizing before returning to work. As expected, the withdrawal headaches were brutal. The first few days were rather painful, though they matched the pain severity and location from bad migraines I'd had before. Then on the 4th day, December 28th I got a very different kind of headache. Normally my migraines are one-sided, sometimes more centered around the forward 1/3 of my head (what many would describe as a tension headache), but this new headache was very localized. It felt like a knife was slicing down my forehead and into my right eyeball. The severity on that first day wasn't horrific, it was similar to a bad migraine, just a different pain pattern. I didn't think much of it at the time, I figured it was just a weird withdrawal headache. Welp, I was wrong. Since then I've had 4 more of these headaches, but the pain severity went from modest to severe in a few minutes. Each time it lasts about 10 - 20 minutes. I thought I understood pain before, I was wrong. Holey moley these things hurt. This initiated a lot of research and has led me to believe I am experiencing cluster headaches (severity and location of pain, eye watering/sobbing, congestion, desire to move around, etc). The only thing that's off, is the frequency. I've had 3 of these thing over an 8 week period. It seems like most folks have these daily for a time period (hence the cluster name), but it's not always the case. Also, I discussed this with my mom, and she confirmed that she and my grandma have both episodic migraines and cluster headaches. She hasn't mentioned it before, but they developed them earlier in life, and they matched the common pattern of a brutal short headache every day for a while, then suddenly nothing for a year, then bam it's back. In any case, I find it peculiar that these suddenly started at age 37 after decades of migraines, just weeks after quitting caffeine. Perhaps the regular caffeine usage was mitigating them before?