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@spp-fan For something like this I would recommend looking into occipital nerve decompression surgery. I normally wouldn't, but if your occipital nerve sheaths are now inflamed or pressing down on your occipital nerves, it could create a cluster-like headache. (Full disclosure: I've had this surgery. It solved this problem, which I also had, for me. I still have other issues and symptoms, but @xxx is helping me work through them with the Vitamin D protocol and @Jteira with the busting; they are both AMAZING.) I'm not sure where you're located but I'm in Charleston, SC, and my doctor/surgeon was Dr. Marcelo Hochman, who has a heart of gold and amazing skill.

I am currently in the middle of a CH season. A couple of weeks into it I discovered I was only taking 1/2 dose of vitamin D3. I had not read anything about the effects d3 has on cluster headaches. I doubled the dose and didn't have another CH for 5 days. On the 5th day I felt another CH coming on so I took another dose. The CH went away and I continue to take 2 doses a day. 1 in the AM and 1 before bed. That's 200mcg per day. Hope this helps

Can't even begin to thank Batch enough!! He's probably saved many lives with his d-3 regiment. I am 65 now and my clusters started in my 30's. Took forever to get diagnosed and then they gave me prednisone which after taking the headaches came back. Tried it all and when I first saw Batch with his vitamin regimen I laughed and thought he was nuts, but I was willing to try anything at that point. Lo and behold in less than a week the headaches subsided and went away. Can't thank Batch enough for what he has done for me and other sufferers. By the way I am episodic... Not chronic.

@Virrr - I started the D3 regimen early last December. After 2 weeks, I noticed a big difference: The D3 regimen had effectively aborted my cycle. I am still on the D3 regimen, and I still get cluster headaches, but they are tolerable and nowhere near as painful as they had been before I started D3. They either go away on their own, or I can treat them with 400 miligrams of ibuprofen. I no longer need to take Relpax (a triptan). For me, the D3 regimen has been a breakthrough. @Batch - Thanks for the additional instructions on the D3 regimen. I found them very helpful.

I have been on batch’s regimen for a few years now and am completely pain free. I have been reading posts on this site and just registered. Just completed survey. Thanks batch. I have passed this info on to the few others I know who suffer.

Hi Virr! I have been on the D3 Regimen for years now. Since 2011 or 2012, can't remember for sure. I have my D3 levels checked yearly. This year my number was 124 measured by US standards. This was higher than my normal 103. So, I decided to cut back on the D3 to 5,000/day instead of the 10,000/day I have been taking. Guess what? I have been slammed with O2 resistant hits. Normally I am nocturnal, but these were hitting day and night. So, upped my D3 again and took a dose pack of Prednisone. It has taken 6 days to get back on track mostly. I am not pain free yet, but I am getting there. Now, you might ask why I did this. Because the doctors stick with 100 as a top number here. Above is safe if your other tests are good. But, I listened to my old doc and sent myself straight to Hades. Never again unless something unforeseen steps up and messes with it! The medical profession needs to catch up and keep up. They do not and likely will not. You are your own best advocate. ATB

Hello. I have been googling to try to find somewhere to chat with other headache sufferers like myself, and I cam across this place. I am not sure if it is related to cluster or not. But just looking for some options, or some other ideas. Back in October I had a sex headache. At orgasm I got a thunderclap headache up my neck and throbbed in the middle back of my head. if you feel the back of your skull it is right in the middle where it is kind of pointy. It jumped up to a 9/10 out of nowhere. I was about to call an ambulance. I was really scared. Over the course of an hour it dropped down to about a 3. Over the next few days I would have headaches on and off. Well I have been left with is positional headaches. When my head is in a forward and looking up position for a few minutes, I get a throbbing headache at about a 7-8/10 in the back middle of my head. If I lay down, within 10 minutes it goes away, without meds. When I say forward and looking up. Think of sitting at the dinner table, leaning over your plate eating, but look up to talk to someone across from you. It seems most of the times I get these I am in fact sitting at a table eating dinner with my family or out at a restaurant. Happened last weekend we were at a wedding. Eating and talking with the other guests, it just popped out of nowhere. I have had a CT scan of my head and neck with contrast. I also had a MRI of my head in December. All came back clear. I had an Occipital Nerve block, and it didn't seem to do much, if anything. I have been put on different types of meds. Carbapenapine, gabapentin, baclofin, and recently Topamax. The Carba made me dizzy same with the gabapentin once I went over 1200 a day, I came off that slowly and then went on Topomax but it made me dizzy and cold and just stopped it today after a week of the side effects. The Neurologist ordered a MRI of my neck, and I am awaiting insurance approval. I am also going to call them later to get something to replace the Topamax. I feel like maybe when I had that original headache it did some kind of damage, maybe a muscle contracted and is now pinching a nerve when I put my head in that position? I don't know, but I am so cautious of the position of my head. I had to slouch in my chair at work to keep my head straight in line with my monitors. But I don't know where to go. I am 39 and have kids that are 8 and 5, I feel awful, I cannot sit at the table with them, for fear of headache. I can't be as active as I once was with them. Yesterday while my wife took them to the movies, I just laid in bed and cried all day. Just so lost. Not sure if I should seek another Dr, or stay the course with the one I have now. I did start using an app called migraine buddy. If you don't have it, I suggest it for any type of headache tracking. Not looking for answers but maybe some questions I should be asking that I am missing. Or anyone else have a similar experience.