Vitamin D3 as a preventative measure
Vitamin D3 as a preventative measure
About me: Episodic Cluster Headaches, seasonal periodicity between November-January
TL;DR - I've been taking Vitamin D3 supplements of 4000 IU daily (not prescribed) during cluster periods for the last couple of years, in conjunction with normal Sumatriptan injections for acute onset. Normally I would get 2-3 headaches in every 24-hour period for 4-6 weeks, but upon starting taking the vitamin supplements (4000 IU is what doctors seem to recommend as a safe dose) my headaches reduced in frequency and stopped within a week on both occasions. This year it has been 3 weeks since my first headache, and I have had 3 cluster headaches total, all of which were in the first week.
I take the vitamins before bed each night, as this feels right to me, though I have no real basis for that!
Not claiming this will work for everyone and I know I am very lucky that it works for me, but it might be worth speaking with your healthcare provider to check if this is an option for you, if you want to give it a try
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Last year I started doing some research on Google Scholar into the potential effects of Vitamin D supplementation on Cluster Headache. Here is a really good open access review article on the links between Vitamin D and headache: https://www.mdpi.com/2077-0383/10/24/5983
It appears there are potential strong links between Vitamin D levels and headache, applicable not just to Cluster Headache but Migraine and other headache disorders as well. People with Cluster Headaches are more likely than the average populace to be deficient in Vitamin D, and there is also some limited evidence that Vitamin D can also help to prevent or reduce the frequency of cluster headache and migraine.
This paragraph in particular caught my eye from the above review:
"To our knowledge, only a poster presentation showed that vitamin D supplementation could be effective in preventing CH attacks. Batcheller, indeed, presented survey results of 110 CH sufferers using a daily anti-inflammatory regimen of vitamin and mineral supplements including 10,000 IU/d vitamin D3 and Omega-3 fish oil as a CH preventative. 80% of CH patients reported significant reductions in frequency, duration and severity of headache [78]. A clinical trial is currently underway to assess the role of high dose vitamin D plus a multivitamin in the prevention of CH [79]."
This is obviously preliminary data, but from my own experience, it has proven true for me (minus the fish oil). I started taking 4000 IU of VItamin D3 during a cluster last year which had been ongoing for a few weeks in December, in which I was getting about 2 per night. This balanced with a 1-year-old waking us up was not great! So I checked for the safe dose recommended by doctors and settled on 4000 IU. Within a week my headaches were down to 1 every 2 days, and then the next week they stopped.
I thought it might be a fluke last year, but this year I started taking tablets right from the start of November. Although my Cluster still started in mid November, I was only having 1 every couple of days, and after 3 headaches they stopped, and have not returned. I'm still taking the supplement and will until spring.
I'd note that there are potential side effects of Vitamin D3 related to calcium build-up (kidney stones are something which comes up) so I wouldn't just take my word for it, but talk to a doctor if you are considering this.
Would be interested to know if anyone else has tried high-dose Vitamin D supplementation and whether it worked for you!
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Wow this is brilliant and something I am going to explore for Hubby. HIs attack started on New Years Day. he's like a sumatriptain pin cushion and can't go out properly because he needs to be near oxygen. I spoke to the GP and asked her to give him a blood test to look at his hormone levels because I had seen some reports about this but your info makes such sense. There has to be a reason for CH and it's probably so easy, no one can see it. I'm going to send the report to her and ask if he can have his D3 looked at too. In the mean time, I've thrown a 400IU VitD3 his way tonight but I'm off to the vitamin shop tomorrow! Many thanks, I'll keep you posted.
Thanks for sharing this, Andy. I had heard of this previously but always steered away from taking anything that could cause further chemical imbalance.
I have been episodic for nearly 30 years now. Last bout of clusters was 2022 but lasted 17 weeks straight. Only mild shadows in 2023 but then end of Jan this year shadows started and were getting progressively worse so I was just waiting for the clusters to kick in but was determined to do something different and not have another 17 weeks of no sleep and no life. Saw your article and I thought I would give the vit D supplements a go. I bought vitabiotics Vitamin D 2000 IU Extra strength from my local chemist.
23rd Feb I took one tablet (2000 IU) before bed along with verapamil 80mg as per usual (I also take one verapamil in the morning). I continued to have increasingly strong shadows 4 or 5 times per day lasting from 20 to 50 min. On the 27th, they had reduced slightly. On the 28th I took a Vit D in the morning, 2000 IU. I continued to take a vitamin tablet in the morning and at night and the shadows got stronger for 2 days but then became less frequent until the 6th March when I had no shadows at all. At time of writing this on the 13th March, I have had no sign of shadows since the 5th March and have continued to take 2000 IU every morning and every night. I have absolutely no doubt that had I not started taking the vit D when I did, that I would now be in the middle of a full blown cluster bout. I intend to carry on taking them till the end of April and then reduce and stop completely. I will probably go back to them in the Autumn if the shadows start. Word of warning though, in the week I started taking them, I read an article on line about an elderly gentleman who unfortunately died through Vit D overdose. He had been taking them for 9 months straight though.
I will give an update in the Autumn if my shadows appear. Thanks again, Andy.
Thanks for sharing that Andy, and good news that it works for you! Word of warning for all high dose Verapamil takers, the ultra high dose Vit D (Hux D3 20,000 units) is contra indicated. I think its ok to take normal doses of it but I'd ask medical advice if you want to take the high dose stuff.
I'm on 720mg Verapamil a day so I avoid D3 supplements, but its working as I haven't had a headache for 7 years, plenty of 'warnings', sensations that I used to get before a full blown attack would happen, but they stop short of going nuclear. I know if I stop taking the Verapamil I'll very quickly be back in the world of pain.
Hi Andy/all,
Has anyone tried this in advance of the cluster bout. I presume others are similar in that they can sense/get symptoms that suggest a bout is around the corner. Do you wait until the first cluster kicks in to take, or has anyone tried this as soon as shadow symptoms arrive?
Thanks,
Carl.